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An Economic Exploration
of the Role of Mandated
Advance Health Care Directives in
Medicare's Financing Crisis
By
Beth Kljajic
Advisor: Prof. Victor Lima
A Thesis
Submitted to the University of Chicago in partial fulfillment
of the requirements for the degree of
Master of Liberal Arts
Graham School of General Studies
(June, 2009)
Abstract
The oldest of the 72 million American "Baby Boomers" - those Americans born
between 1946 and 1964 - will be eligible for Medicare in 2011. By the year 2030, the
beneficiaries enrolled in Medicare are projected to rise from 46 million to 78 million.
Without a change in our current system, Medicare + Medicaid could grow to over 1/3 of
GDP, an untenable level. The number of workers paying taxes to support beneficiaries is
projected to decline from 3.7 workers per beneficiary to just 2.4 workers per beneficiary.
As of September 30, 2007, the projected expenditures for Medicare benefits paid under
today’s standards exceed earmarked revenues (i.e., dedicated payroll taxes and
premiums) by $34 trillion.
Currently, 30 to 35 percent of Medicare expenditures are spent on just five
percent of the elderly in the last year of their lives. This breaks down to for every one
hundred dollars spent on one hundred Medicare recipients, thirty-five dollars will be
spent on just five people leaving the other ninety-five people together spending the
remaining sixty-five dollars. On average those five dying people will spend ten times
what the other ninety-five people spent. One strategy for reducing astronomical end-of-
life medical costs is to require all beneficiaries of Medicare / Medicaid to have End-of-
Life Directives. This paper will explore the political and economic implications of
advance health care directives and their potential as an effective, choice-based
intervention in the exploding cost of health care for the elderly, particularly those among
them that are in the last twelve months of their lives.
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1 The Impending Financial Crisis for the Medicare/Medicaid Programs
1.1 The Demographics, aging and changing health care needs of the American
population
1.2 Financial projections for the not very distant future
1.3 Knowledge may be powerful; give Americans the information they need to make
decisions for their own lives and to take personal accountability for those decisions
1.4 Description of Advance Health Care Directives
2 The purpose and history of the Medicare/Medicaid Program for the Elderly
2.1 A Legislative Plan for America’s Elderly
2.2 The changing field of medicine and what that means for Medicare/Medicaid
services in the 21st
Century
3 The Americans who are affected by this crisis
Page 3 0f 62
3.1 Those current Medicare/Medicaid beneficiaries and those members of the Baby
Boom generation who will begin to join in the next two years
3.2 The current members of the American workforce who are paying the taxes to
support this system
3.3 Future generations of Americans who will be requiring to continue this system and
its heavy debt load
4 The Current Method of Providing Medical Services to Medicare/Medicaid
Beneficaries
4.1 Actual case studies about Medicare/Medicaid beneficiaries that happened in the last
fifteen years
4.2 American Healthcare and our somewhat unique approach to old age
5 Other Options for Medical Services for the Elderly
5.1 How other nations treat this issue: Rationing and Death with Dignity Laws
5.2 Educating Americans on the life cycle of the species
6 Who Argues for and against What Options
6.1 Politics: usual and unusual
6.2 Religious institutions
6.3 The harm that may be caused by forcing Americans to explore, research, learn
about and make informed decisions about their own death
6.4 Economic issues such as lack of incentives, fairness issue, efficiency of
expenditures
7 Advance Health Care Directives as One Component of the Proactive Changes That
Must be Made to Medicare/Medicaid service to save some portion of it
7.1 As members, both givers and takers, in a society there are rights and
responsibilities within each system
7.2 Unless those members are willing to also assume the responsibilities for themselves
they have the ability to bring down an entire society, the people and the structure
Page 4 0f 62
1 The Impending Financial Crisis for the Medicare/Medicaid Programs
1.1 The Demographics, aging and changing health care needs of the American
population
The oldest of the 72 million American "Baby Boomers" – those people born in the
post war years of 1946 to 1964 - will be eligible for government funded health insurance
programs in 2011. Without a change in our current system, Medicare + Medicaid – the
programs for those 65 years of age and older with additional funding for the low income
elderly, could grow to over 1/3 of GDP, an untenable level. This one third of the GDP
will not be able to be invested in productive alternatives such as the education of the
people in our nation or any other, national or local infrastructure development, research
and development of new sources of energy, better agricultural methods, environmental
safety for the whole planet, new technology in dozens of fields or a multitude of other
valuable purposes. Instead much of it will be spent on prolonging the life, without regard
to its quality, of terminally ill people entering the final phases of their lives. As the
system works now, one of every three cents produced in this country will be directed
towards this endeavor.
A very wise man, Peter Peterson summed it up by saying, “Global aging is like a
massive iceberg which very well could destroy even the most powerful economic vessels
in the world.”1
1
P. Peterson, Gray dawn: How the Coming Age Wave will Transform America and
World, (New York: Random House, 2000).
Page 5 0f 62
1.2 Financial projections for the not very distant future
The Financial Threat
Economics of this issue are the root of this problem. If our nation had limitless
resources, there would be no dilemma in terms of addressing the future health care costs
of our aging population and the burden thereby placed on current and future generations
of working Americans who will be paying for it. But we do not have unlimited funds, and
in good economic times or bad, we must make conscientious and carefully planned
choices about how to allocate the funds that we do have. The demands on those funds
will be substantial, but those demands must be tempered by the seriousness and
magnitude of the implications of the choices we make regarding the way we care for our
aging and elderly members of our population.
From 2010 to 2030, the number of people on Medicare is projected to rise from
46 million to 78 million, while the number of workers paying taxes to support
beneficiaries is projected to decline from 3.7 workers per beneficiary to 2.4 workers per
beneficiary.2
The frightening financial projections continue. As of September 30, 2007, the
projected expenditures for the benefits paid under today’s standards exceed earmarked
revenues (i.e., dedicated payroll taxes and premiums) by approximately $41 trillion over
the next 75 years in present value terms. Of that $41 trillion , $34 trillion is related to
Medicare programs.3
P. 7 And the ‘earmarked revenues’ are based on dedicated payroll
2
www.kaisernetwork.org
Medicare Spending and Financing Fact Sheet
Information provided by the Medicare Policy Project
Publication Number: 7305-03
Publish Date: 2008-09-02
3
GAO-08-912T Statement of Social Insurance in the 2007 Financial Report of the
Page 6 0f 62
taxes that are also projections which do not reflect the economic downturn starting in late
2008. Thirty-four trillion is a very large number of dollars to be short for a program
which is planning to cover the health care costs for more than one hundred million people
during the same seventy-five year period.
1.3 Knowledge may be powerful; give Americans the information they need to make
decisions for their own lives and to take personal accountability for those decisions
There are many options available to America and its citizens for dealing with this
crisis. From an economic perspective, unlike the ethical, religious, moral perspectives,
there are no right or wrong answers. What won’t change is the fact that Americans are an
aging population. What’s important is that we face, discuss, research and incorporate one
or more of the components that will allow us to control this rapidly on-coming financial
threat and to benefit as a society from these changes.
In 2000, Bill Moyer produced and anchored an award winning Public Broadcasting
System television series titled, On Our Own Terms. It is the basis of a national outreach
effort to encourage discussion and community action on end-of-life issues. It is available
on-line and is a well-produced program discussing a wide range of contents. It omitted
one ‘minor’ detail: how to finance the Medicare system. Nor did it address how the dying
elderly in the final year of their life use such a large portion of available Medicare
dollars. This subject is neither politically correct, religiously correct and nor a fun one to
debate over a nice hike in the mountains of Arizona. But that does not change the fact
that we are short at least $34 trillion and that we must find a way to either finance or
change this program and must do it in the very near future.
United States Government
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There are many options open to the American people on how to deal with this
oncoming financial crisis. None will appeal to all. Some will be favored by some of the
people. Some will be favored by other members of our population. Some people will not
like any changes at all. And our elected officials, religious leaders, powerful lobby
organizations, medical communities and insurance companies all will impart their ideas
and wisdom upon the issue. What I propose is not the answer to end of all answers.
Instead, there is a very simple legal process, available at no cost to the population in all
fifty states. Advance Health Care Directives are a device to help people prepare and take
responsibility for their own future, decades before most of them will ever need to use the
decisions they’ve made.
The strategy I’m proposing for beginning the process of reducing the astronomical
government funded health insurance programs end-of-life medical costs is to require all
beneficiaries of Medicare / Medicaid to have End-of-Life Directives starting before they
receive the first cent from the program. This paper will explore the political and
economic implications of Advance Health Care Directives and their potential as an
effective, choice-based intervention in the exploding cost of health care for the elderly,
particularly those among them that are in the last twelve months of their lives.
Page 8 0f 62
1.4 Description of Advance Health Care Directives
An Advance Health Care Directive is a legal instrument, recognized and formulated
in each of the fifty states, that describes how a person wants his or her medical decisions
made ‘in the event of decisional or communicative incapacity’4
p xix. It is different than a
Living Will; you name an agent to make your medical decisions for you in the event you
are no longer able. That named agent is assigned the power of attorney to do so. Living
Wills may be limited to direct instructions about your end-of-life care which can and are
be problematic if what happens to you isn’t covered in the instruction set. These legal
instruments are written based completely on your personal preferences and may or may
not actually decrease Medicare spending on an individual basis.
4
Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook
for Professionals. Chicago: American Bar Association.
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2 The Purpose and History of the Medicare/Medicaid Program for the Elderly
2.1 A Legislative Plan for America’s Elderly
Contrary to the heated public debate over the subject, the United States of America
does actually have a federal health care coverage and insurance program. The largely
unspoken issue with this program is that it is only for those Americans who are very
poor, children, the disabled or those aged sixty-five or older, mostly this latter group. It’s
the working poor and employed-but-uninsured people who choose not to purchase their
own health insurance policies, the very people paying Medicare payroll taxes, who are
not included in our federal health care coverage programs. Both the uninsured and
insured working Americans who pay their Medicare payroll taxes to support those elderly
currently participating in the government funded health insurance programs are a part of
the 3.7 workers per Medicare beneficiary that is working itself down to just 2.4 workers
per Medicare beneficiary in the not very distant future.
The Medicare program itself just celebrated its 44th
birthday. Medicare and
Medicaid were signed in to law in 1965 under President Lyndon B. Johnson; they passed
in the House with a vote of 313-115 and in the Senate 68-21. Actuaries at the time
estimated that the monetary costs of the bill which passed was about $3 billion a year;
that is an equivalent number to about $19 billion in 2007 dollars.5
A variety of groups
opposed the original legislation for an equal variety of reasons. The American Medical
association (AMA) suggested the program would ‘endanger the relationship between
patients and doctors’ according to its then President, Donovan Ward. A B-movie actor,
originally from the State of Illinois, was emerging as a political force and starting in 1947
5
Aaron, H., Lambrew, J. (2008). Reforming Medicare: options, tradeoffs, opportunities.
Washington, D.C.: Brookings Institution Press.
Page 10 0f 62
served seven years as the Screen Actors Guild (SAG) President. At this point in his career
he was a Democrat but would later switch parties and serve as both a Governor and U.S.
President. His name was Ronald Reagan and he spoke strongly about Medicare being a
program that would invite socialism which would then ‘invade every area of freedom in
this country.” I researched the Internet in an attempt to learn the total amount of Medicare
dollars spent in his final year when he was dying from complications of Alzheimer’s
disease. I was unable to ascertain a financial cost but perhaps he was correct to worry
about lost freedom; he certainly lost his, due to his Alzheimer’s. “Today, Medicare
beneficiaries with Alzheimer’s account for 34 percent of Medicare spending, even though
they constitute only 12.8 percent of the population over the age of 65. With the nation’s
77 million baby boomers approaching old age, the number of Americans with the disease
and associated costs are projected to soar.”6
President Reagan spoke to us about this very
issue when he stated, “I have recently been told that I am one of the millions of
Americans who will be afflicted with Alzheimer's Disease... At the moment I feel just
fine. I intend to live the remainder of the years God gives me on this earth doing the
things I have always done... I now begin the journey that will lead me into the sunset of
my life. I know that for America there will always be a bright dawn ahead. Thank you,
my friends. May God always bless you.”7
The questions he left open were how long that
sunset of his life was going to last according to God, how much money it would cost the
American taxpayer to fund it and whether he still valued those “sunset” years given that
he’d lost all his freedom due to Alzheimer’s are different issues.
6
http://seniorjournal.com/NEWS/Alzheimers/4-06-24Breakthroughs.htm
7
"The Alzheimer's Letter". PBS.
http://www.pbs.org/wgbh/amex/reagan/filmmore/reference/primary/alzheimers.html.
Page 11 0f 62
2.2 The changing field of medicine and what that means for
Medicare/Medicaid services in the 21st
Century
Medical science in the past fifty years has afforded us with life saving
technologies unavailable to those who lived before our times. There are so many
enhanced treatments now and more emerging every day. From vaccines against polio to
chemotherapy for cancer patients to dialysis equipment to coronary angiography for
open-heart surgery. Add artificial heart valves, better antibiotics, ventilators and the list
keeps expanding. These new forms allow medical professionals to both treat and expand
the lives of millions of people who in earlier times would have succumbed to their
illnesses. But none of these advances, to date, has changed the fact that humans only live
a certain number of years and at some point will die of causes related to old age itself.
The elderly and frail and ill part of population may or may not benefit from all these new
forms of medical treatment. The very word ‘benefit’ itself has been one of the focal
points of disagreement between the people and organizations beginning to address this
issue. What is a benefit and how should it be defined? Quality of life versus quantity of
life begins to take a larger part of the decision making at this point. But by the time most
adults have reached ‘this point’ it’s to late to start the discussion.
Page 12 0f 62
3 The Americans who are affected by this crisis
3.1 Those current Medicare/Medicaid beneficiaries and those members of the
Baby Boom generation who will begin to join in the next two years
While Medicare is totally digitally-run the numbers are never quite as clear as they
should be. In 2007 approximately 36.9 million people of the age of sixty-five and another
7.2 million disabled people (of all ages) are covered by the Medicare insurance program.
Total benefits paid were $425 billion. Income was $462 billion and expenditures were
$432 billion. Assets held in special issue U.S. Treasury securities grew to $369 billion.8
There are multiple components to the program and more effective, usually better pieces
are being added. The first is Part A which is the Hospital Insurance (HI) covering
inpatient services, home health care, nursing homes, assisted living and hospice care. A
worker, and his/her spouse, must have paid Medicare payroll taxes for at least forty
quarters (ten years total) to be eligible for this portion of the program for free.9
8
2008 ANNUAL REPORT OF THE BOARDS OF TRUSTEES OF THE FEDERAL
HOSPITAL INSURANCE AND FEDERAL SUPPLEMENTARY MEDICAL
INSURANCE TRUST FUNDS
9
http://questions.medicare.gov/cgi-bin/medicare.cfg/php/enduser/std_adp.php?
p_faqid=2100
Page 13 0f 62
3.2 The current members of the American workforce who are paying the taxes
to support this system
The 3.7 workers per Medicare beneficiary, who today fund the Medicare program,
do so by paying a 2.9% payroll tax that is levied on all their earned income. It does not
have a maximum earnings cap as, for instance, does the Social Security/FICA payroll tax.
There is a deductible amount of $1,068 per illness (2009), for each Medicare participant
when they enter the hospital. After that time, Medicare pays the rest of the hospital costs
for sixty days; there may be more ‘cost’ sharing by the Medicare beneficiary after the
sixty-day period.
Medicare Part B, known as the Supplemental Medical Insurance (SMI), covers
costs including for Medicare eligible physician services, outpatient hospital services,
certain home health services and durable medical equipment. Even though the names are
similar/same, it is not Medicare Supplemental Insurance which have government
mandated coverage requirements and may be purchased from private insurance providers.
Participants in Part B buy their coverage, usually withdrawn from Social Security checks.
The government so heavily subsidizes this program that it would be difficult to find a
private insurance provider who could effectively compete with the prices and coverage
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provided. There are income-based determinants for the premium amounts for Medicare
Part B coverage but the 99% of Americans qualify for the lowest amount of $95.4010
. The
table below shows the premium for 2009:11
You Pay If Your Yearly Income is
Monthly Premium Single Married Couple
$96.40 $85,000 or less $170,000 or less
$134.90 $85,001-$107,000 $170,001-$214,000
$192.70 $107,001-$160,000 $214,001-$320,000
$250.50 $160,001-$213,000 $320,001-$426,000
$308.30 Above $213,000 Above $426,000
According to the paper, "Senior Century: A Legislators' Guide to Seniors' Health
Care Issues," written by Merrill Matthews, Jr., Ph.D. and Jim Frogue for the Council of
Affordable Health Insurance the federal government pays for 75% of Part B costs out of
general revenues. The premiums and a $135.00 deductible (2009) paid by the
beneficiaries don’t come close to covering the costs of the program itself. The 1970
average per beneficiary cost of $356 is to $1,902.42 in 2007 dollars. But today, as of
2007, the average per beneficiary cost is $10,460; more than five times higher than the
adjusted amount paid out in 1970 for each Medicare beneficiary.
While the system is continually changing, there are not enough changes
happening quickly enough to address the impending crisis. Medicare+Choice program, or
Part C, was enacted by the Congress in 1997. This was the first time the Medicare
program allowed seniors to leave traditional Medicare and join a private sector health
10
http://www.cms.hhs.gov/apps/media/press/factsheet.asp?
Counter=3272&intNumPerPage=10&checkDate=1&checkKey=&srchType=1&numDay
s=7&srchOpt=0&srchData=
&keywordType=All&chkNewsType=6&intPage=&showAll=1&pYear=&year=0&desc=
&cboOrder=date
11
https://questions.medicare.gov/cgi-bin/medicare.cfg/php/enduser/std_adp.php?p_
faqid=2099&p_sid=L_uk7Quj&p_lva=2100
Page 15 0f 62
plan, usually in the form of an HMO. That initial change in the program has been updated
by Medicare Advantage which itself was enacted in November of 2003.
Most Americans reading this paper will be aware of the latest legislation passed
since it was so widely covered in all types of press and media. The Medicare prescription
drug benefit was scheduled to begin in 2006. And Medicaid covers many of the costs
associated with this new prescription drug program for any low-income elderly
beneficiaries. This portion of the benefits is still new, constantly changing and far from
being a complete answer to the prescription drug problem(s).
Why Advance Health Care Directives Would Be an Effective Component of the Solution
“Health care expenditures in the United States exceeded $2 trillion in 2006 and
are expected to rise rapidly during the next decade. A disproportionate share is spent at
the end of life (EOL). Thirty percent of Medicare expenditures are attributable to 5% of
beneficiaries who die each year; about one-third of the expenditures in the last year of life
is spent in the last month. Previous investigations have found that most of these costs
result from life-sustaining care (eg, mechanical ventilator use and resuscitation), with
acute care in the final 30 days of life accounting for 78% of costs incurred in the final
year of life.
A recent study using data from a longitudinal multi-institutional cohort study,
Coping With Cancer (CWC), showed that End Of Life conversations between patients
and physicians are associated with fewer life-sustaining procedures and lower rates of
intensive care unit (ICU) admission. These findings suggest that EOL discussions might
reduce health care expenditures by reducing the use of ICU care by patients with cancer.
Singer and Lowy have suggested that policies asking patients about their wishes
Page 16 0f 62
regarding life-sustaining treatment and incorporating them into Advance Health Care
Directives might result in cost savings by reducing undesired care at the EOL. However,
other researchers have not found an association between Advance Health Care Directives
and cost reduction. To our knowledge, the association between patient-reported
discussions of EOL care preferences with their physicians and health care expenditures
has not been well studied.”12
12
Health Care Costs in the Last Week of Life
Associations With End-of-Life Conversations
Baohui Zhang, MS; Alexi A. Wright, MD; Haiden A. Huskamp, PhD; Matthew E.
Nilsson, BS; Matthew L. Maciejewski, PhD; Craig C. Earle, MD; Susan D. Block, MD;
Paul K. Maciejewski, PhD; Holly G. Prigerson, PhD
Arch Intern Med. 2009;169(5):480-488.
Page 17 0f 62
5 Other Options for Medical Services for the Elderly
1.4 How other nations treat this issue: Rationing and Death with Dignity Laws
America is not alone in facing this issue. Many countries including Japan, Italy,
Germany, among others have populations more aged than the United States and are
reproducing even fewer babies, who will at some point enter the workforce and pay their
taxes, to compensate for the increasing number of elderly. Thousands and thousands of
pages could be written about the different methodologies for addressing this societal
dilemma. Almost all countries with nationalized health care programs, such as the United
Kingdom, Canada and France, have chosen rationing as a significant component of their
methodology. They simply don’t treat specific illnesses in people older than a pre-
determined age. And they make if very difficult for medical professionals to offer pay-
for-services to patients who can afford to go outside of the national healthcare system.
Some states, including Oregon and Washington, as well as countries such as the
Netherlands, Belgium, Albania and Luxembourg, allow for either active euthanasia or
physician-assisted suicide. Other countries such as Switzerland, where it is not legal,
choose not to take any legal or punitive actions against doctors who perform euthanasia.
While it appears that these forms of euthanasia are gaining increasing support in many
countries, the number of people actually using the legal forms of self-determination is
still very small. Most of the people who do appear to be using this form of life ending
medicine are not elderly; they are terminally ill and suffering because of their illness and
its treatments.
Many nations do not now, nor will they in the future, have the economic resources
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to provide these life-sustaining services to the terminally ill elderly or even to their young
people. The real question is does any nation, rich or poor, have the financial wherewithal
to provide curative medical services to their aging populations in the final year or years
of their lives. The Greek and Roman ‘phases’ of life were multiples of seven and were
“understood to be a part of the natural order.”
Due to the lack of studies related to Advance Health Care Directives, their ability
to positively impact the end-of-life medical care costs for the elderly has not been proved
or disproved. I suggest, based on the simple fact that nearly 35% of Medicare+Medicaid
dollars are now currently spent on the final months of life for terminally ill patients, that
the evidence for profound cost savings were Advance Health Care Directives to become
mandated will manifest itself quickly. And given the above referenced limited number of
studies that were performed regarding advanced health care directives for use as a tool
reducing the Medicare costs for the elderly recipients in the last year of their life, they
have the ability to make significant differences in the types of care we choose to receive
for ourselves in the future.
Advance Health Care Directives place the decision-making for the end of each
person's life in his or her own hands – not in the hands of the State, not in the hands of
their adult children and grandchildren, not in the hands of their religious leaders, not in
the hands of the legal system or even their own doctors – at a time when they are willing
and able to make such decisions. They may be influenced by others, but during a time in
their life cycle when they are healthy and can inform themselves about options and make
educated plans, not at a time when they are already terminally ill. This concept is about
personal responsibility, accountability and self-determinization. If we are given the facts
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including the monetary costs, the effects of curative treatments and the statistical odds of
success, when we are healthy adults we may choose to make decisions that will have
dramatic cost containment results on our medical care in the final days of our lives.
Based on the statistics cited in this section, many or even most Americans could
and may select end of life health care options that will reduce the costs of their medical
care in the last months of their lives and even provide them with significant palliative
care that will make them more comfortable and to allow them to die with dignity instead
of hooked up to endless and futile machines and treatments. Dignity is not engraved in
stone; different people, different religions, different cultures, different socio-economic
stratus all have views of what dignity is. Yet by allowing, even mandating, American
adults to make these type of decisions prior to their terminal illness they can then
demonstrate their personal understanding of dignity. Through an advance directive, they
will be able to ensure that they are treated in a way, or in what they currently believe is a
way, which will afford them the highest level of dignity in the final throes of death. There
are no right or wrong answers and each person may choose for his or herself their own
answer.
Up until the 1950’s most American’s died in their own homes lacking the types of
medical services, machinery and medications that are available in the 21st
century. Data
from the National Vital Statistics System (NVSS), which collects death certificate records
from all fifty states, shows that more than seventy percent of our population currently
dies in hospitals, nursing homes and assisted living centers. Due to this huge proportion
of the dying elderly spending their final days in medical care facilities, 30 to 35 percent
of Medicare expenditures are now spent on just five percent of the elderly in the last year
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of their lives. This breaks down to for every one hundred dollars spent on one hundred
Medicare recipients, thirty-five dollars will be spent on just five people. The other ninety-
five people together spend the remaining sixty-five dollars. On average those five dying
people will spend ten times what the other ninety-five people spent. To discuss these
Medicare+Medicaid tax dollars as a national resource and to imply that there are better
allocations for our tax spending is an unpopular position to broach. Politicians and
government bureaucrats who must take these kinds of stands and make these types of
decisions are faced with some unpleasant realities. Perhaps we, the people, can help them
begin to address these difficult types of issues by taking care of our own spending and
ourselves.
If those five dying elderly Medicare recipients were aware, long before they
reached the time of age and terminal illness in their lives, of what the financial costs
would be to extend their life another thirty or sixty days, they might not choose to do so.
Each person entering the Medicare program should be told in a brief and concise way that
their own health care treatment costs will be paid for by 2.4 American workers being
taxed 2.9% of their income. Given that information, some of these Medicare+Medicaid
beneficiaries-to-be might have serious thoughts about how they will use those dollars. I
argue that given these facts, many Americans would, through the use of advance
directives, make different choices for themselves than are currently being made by family
members, medical professionals and courts. And, through this method of mandated
Advance Health Care Directives, Americans would begin to decide on and sign their own
at much earlier ages and during better periods of health.
Medicare+Medicaid may have been designed correctly for the medical science
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available at the time it began, 1965, and is still able to provide beneficial coverage to
healthy people who have a disease that may be treated and cured. It may never have been
intended to take care of those dying, terminally ill elderly passing away in hospitals and
nursing homes. In the Denial of Aging book, Dr. Gillick cites another of her publications
and describes Medicare as “favoring institutional care over home care, it supports
technology-intensive treatment rather than labor-intensive care, and it fails to provide
adequately for chronic diseases.13
She identifies countless ways to recreate Medicare for our aging population.
Rationing, Death-with-Dignity laws like those in the states of Oregon and Washington,
higher co-pays and gaps in coverage are all discussed. This paper is not about those
concepts but about a simple way of encouraging and requiring adults to make their own
end-of-life health care decisions well in advance of that time.
What Should the End-Result Goal be In Providing Medical Care to the Elderly
First, I should define what the term elderly means in this paper. As defined by
http://www.merriam-webster.com/dictionary/elderly it means basically nothing.
1 a: rather old; especially : being past middle age b: old-fashioned
2: of, relating to, or characteristic of later life or elderly persons.
As the Baby Boomer generation is so fond of saying, “Fifty is the new thirty.” We
consider ourselves to be just starting middle age at fifty. This generation continues to be
strong, healthy, independent members of our society. But at some point in our life spans,
we will begin to reach the end of the cycle itself. It may be at sixty-five years of age, the
current number for entry in to the Medicare system. It may be at eighty-nine years of age,
13
Gillick, M., Mitchell, S. (2004), A Framework for Meaningful Medicare Reform,
Journal of Aging and Social Policy, 16:1-12.
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the time when we are no longer able to walk eighteen holes of golf. It may be at the grand
age of one hundred, when we still walk to work, enjoy our wine with dinner and tell
stories of Asian travel in the 1920’s, while we can’t remember what happened yesterday.
So it’s not an age carved in stone anywhere but it is a definite phase of life that we, as all
living creatures do, will experience. This does not have to be a bad process. If we are
provided with care to help us be more comfortable, experience less pain and fear, we may
be able to pass through the dying stages with dignity and grace.
Dr. Muriel Gillick sums it up so clearly when she states, “The goal of screening
tests and physical examinations in old age is not to stave off death, a hopeless and
counterproductive aim. “14
p. 36 One of the components of this difficult subject matter is
the issue of what kind of care should actually be provided to the elderly and terminally ill
aged-patient. There is curative care, that we provide and finance for our elderly today,
whose goal is to cure the disease or illness from which the patient is suffering. A seventy-
eight year old woman, with a past history of heart disease and surgeries for both her heart
and her lung cancer, is not going to be ‘cured’ of her current valve blockage and cancer in
her remaining lung. She is going to die; the question is at what financial cost to the
Medicare system, suffering how many types of side effects from her treatments and with
a quality of life that she may not have selected if given the option, either currently or at
an earlier point of time in her life.
14
Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press
Page 23 0f 62
4 The Current Method of Providing Medical Services to Medicare/Medicaid
Beneficaries
4.1 Actual case studies about Medicare/Medicaid beneficiaries that happened
in the last fifteen years
Dr. Gillick describes four factors as affecting the decision making process in the
care of an elderly person. First the low effectiveness ratio of possible treatments, next the
high burden related to medical care imposed on the patient, financial costs and imminent,
impending death. She describes the actual experiences of one of her patients in great
detail and speaks to the issue of burden of her treatments that, while unable to increase
her life for much longer, did cause her to “feel pain – her moans, her grimaces, and her
expressive eye movements in response to painful stimuli…”15
p. 74. The woman whose
case was written about had two daughters managing her health care and treatments.
Given that this woman was at the time of her death ninety years old, her daughters must
both have been at least sixty years old each. They even admitted that their mother had
never spoken about wanting her life prolonged in this type of torturous way and that she
did not practice a religion that forced it upon her. The daughters themselves felt bound to
subject her to these treatments as a result of their own religious convictions. The type of
religion itself wasn’t mentioned but at most other times of a persons life, if they were
being treated in such a painful way it would usually be considered abusive and not
allowed even under the separation of church and state laws. And, of course, it wasn’t the
daughter’s money that was being spent on subjecting their dying mother to these types of
invasive and unsuccessful, in terms of saving her life, treatments. It was the American
taxpayers money.
15
Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press
Page 24 0f 62
The following law case serves as an example of the serious nature of these
types of decisions especially when left undecided until a patient is dying or family
members, suffering from their own anguish, have to make them. Dr. Ronald E.
Cranford, working in his role at Hennepin County Medical Center asked the Fourth
Judicial District Court, Hennepin County, Minnesota to help decide who makes the
final decision regarding the ongoing treatments for an 88-year-old woman, Helga
Wanglie, who was a patient at the hospital and was currently being kept alive by a
Ventilator system, although she was in a coma. Her hospital treatments began on
December 14, 1989 when Mrs. Wanglie slipped on a rug in her Minneapolis home
and broke her hip. The hip fracture itself was successfully treated and she was
discharged to a nursing home. She was re-admitted to HCMC on January 1, 1990,
seventeen days after the first accident happened, when she developed respiratory
failure and was placed on a respirator. Due to continuing respiratory problems, the
hospital was unable to wean Mrs. Wanglie from the respirator, and on May 7, 1990
she was transferred to another facility that specializes in the care of respirator-
dependent patients. She experienced a cardiopulmonary arrest on May 23. She was
resuscitated and then transferred to another acute care hospital in St. Paul. All the
medical professionals involved in her care now felt that she had extremely severe
and irreversible brain damage. Because of this prognosis, and the seemingly futile
chances of her improving, a hospital ethics committee reviewed her case and the
doctors discussed with her family limiting or stopping further life-sustaining
treatment. Her family refused to accept this limitation of services and requested that
Mrs. Wanglie be transferred back to HCMC, where they felt she had received
Page 25 0f 62
excellent care. Keep in mind that what they described as excellent care did nothing
at all to improve the quality of Mrs. Wanglie’s life; it just kept her alive longer.
Since May 31, 1990 and the patient was readmitted to HCMC, she has been
vigorously treated with continued respirator support, antibiotics for recurrent
pneumonia, artificial feeding, and treatment for electrolyte and fluid imbalance. In
complete agreement with the medical professionals at St. Paul’s acute care hospital,
the initial diagnosis upon readmission to HCMC was persistent vegetative state
secondary to severe hypoxic-ischemic encephalopathy. Repeated evaluations by the
neurology and pulmonary medicine services confirmed the diagnosis of permanent
unconsciousness (persistent vegetative state), and permanent respirator dependency
because of chronic lung disease.
All the same issues referred to in this paper previously were part of Mrs.
Wanglie’s experience. Her advanced age, previous lengthy hospital stays at
HCMC in early 1990, multiple medical complications, unsuccessful weaning from
the respirator, and neurologic condition, the medical staff caring for Mrs. Wanglie
on a daily basis viewed her prognosis as extraordinarily poor. They did not believe
that the respirator could benefit her. But this leads back to the question of what is a
benefit and who is receiving it? Her immediate family--her husband, daughter, and
son--insisted that all forms of treatment be continued. Her family members did
agree to a Do Not Resuscitate (“DNR”) order if she sustained another heart attack
given that recovery, in her persistent vegetative state, from any cardiac arrest would
be extraordinarily unlikely.
Oliver Wanglie claimed to understand that due to her current status his wife
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is unaware of herself, her surroundings and his visits. When asked, repeatedly and
by multiple professionals, if he understood the medical diagnosis itself and that his
wife would not recover consciousness or improve in any significant way, he
replied, "That may be true, but we hope for the best." A major component of the
current legal dilemma is the definition of ‘the best’ and who decides what that is.
Yet neither this law case nor this paper is attempting to address that definition. We,
as healthy adults, may attempt to define this by our own Advance Health Care
Directive; then it will not be in the hands of a court to decide for us.
The family's continued refusal to discontinue treatment is based on their
religious and personal belief system. Mr. Wanglie has stated that only God can take
life and that doctors should not play God. Prior to December he told hospital staff
that his wife had not discussed these issues, and that her views were a "black box."
What Mr. Wanglie did not address was why he believed that life sustaining medical
treatments in the form of high levels of technology, machinery, prescription
medications, endless hospitals and expensive labor costs were part of God’s plan,
not that of man. Let’s for a moment agree to support his belief system and agree
that only God could take life; the good Lord seemed to be doing his/her best to take
his wife from this world. Man/woman, in the form of medical professionals, were
being asked by him, Mr. Wanglie, to prevent this from happening.
To return to the 1991 Minnesota case, Oliver Wanglie wrote, "My wife
always stated to me that if anything happened to her so that she could not take care
of herself, she did not want anything done to shorten or prematurely take her life."
Unfortunately, Mrs. Wanglie never wrote anything like this when she was capable
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and still healthy. And, to date, since the inception of her fall and hip surgery, Mrs.
Wanglie’s care had now cost Medicare and Physicians' Health Plan, a private
supplementary insurance plan that the Wanglie’s purchased, $800,000; in 1991
dollars. The amount in 1991 dollars has the same buying power as $1,246,361.23 in
2009. And that doesn’t take in to account the larger sized increases in medical
inflation; it’s an ‘average’ number.16
The hospital asked the court to appointment a conservator, not her family
member(s), to represent the patient to decide whether continued treatment is appropriate.
It did not directly request the court to discontinue treatment immediately over the
objections of the family. They asked for the court’s assistance in this issue so that her
family cannot make the demand that physicians continue to give treatment that is not in
the patient's best personal medical interest. $800,000 is a lot of money to spend on a
person in a vegetative state, who is in the natural process of dying and who will never
even know it was spent. This is not in anyone’s medical interest, expensive or not, and
should never be undertaken in this country for any of the seventy seven million baby
boomers whose lives are just beginning to enter their own final stages. The court ruled in
Mr. Wanglie’s favor and appointed him guardian of his wife in the final days of her life.
She died three days after the court ruling.
4.2 American Healthcare and our somewhat unique approach to old age
There may be several ways to provide care to the elderly, particularly the
terminally ill elderly. The first is to seek to extend their lives without regard to what the
type of life we may be able to extend for them will be like. Confined to a bed, hooked up
16
http://www.bls.gov/data/inflation_calculator.htm
Page 28 0f 62
to one or more life-sustaining machines, medicated to a level to prevent pain, suffering
and human discourse, completely dependent on others, some known and maybe related to
and some not known, for their care. This care may be provided in their own home, in a
hospital setting, a nursing home or in a center for assisted living. This curative approach
may in fact work for some number of the elderly population. Their lives may be extended
by years and they may be healthy and productive. This form of “maximally aggressive”17
p. 42 may be due to fact that in America patients appear to be offered only two forms of
treatment: the curative form and comfort care such as hospice. The SUPPORT study, that
is the main source of information used regarding American preferences for the care of
seriously ill hospitalized adults, only offered those two options to the people responding.
The one they left out is defined as intermediate care; care that may not extend their lives
the same number of days but will give them options as to the side effects, quality and
methods for living out their last days. And the costs they, as the future recipients of
Medicare benefits, feel should be expended by the American people on those last ninety,
one hundred and eighty or three hundred days.
Today, the second most often provided care, after curative, is called palliative
(comfort) care or hospice care. It’s became a part of the Medicare system in 1983 and
provides care for patients with less than six months to live. “Palliative treatment: To
palliate a disease is to treat it partially and insofar as possible, but not cure it completely.
Palliation cloaks a disease. Also sometimes called symptomatic treatment.” 18
The root of
the English word palliative is derived from the Latin "pallium"; a type of cloak in ancient
Greece and Rome. The use of the word pallium later emerged as a white woolen band
17
Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press.
18
http://www.medterms.com/script/main/art.asp?articlekey=10703
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with pendants in front and back worn by leaders of the Roman Catholic church including
the pope or an archbishop as a symbol of full Episcopal, or universal, authority. As that
old Latin word continued it’s forward motion to contemporary meaning it began to be
either an adjective such as "cloaked" or "concealed" or a verb meaning "to cloak," "to
cloth," or "to shelter."
The reason for bringing up this palliative or symptomatic form of medical
treatment is that the purpose of these treatments is not curative or to cure the disease
itself. These types of treatments are intended to clock or conceal the symptoms of the
disease and by doing so perhaps shelter the person from its negative effects. Treating the
symptoms is a markedly different approach than treating the disease itself.
The American culture is not one that easily accepts losing; the medical
professional in our country are far from alone in their belief. So many of our beliefs are
based on the premise that if you give it one hundred percent effort, put your best faith
efforts forward, you will eventually find success. Unfortunately, for the dying and frail
elderly person, this is not so. No amount of effort, no amount of financial expense, no
amount of medical treatment will bring success in terms of a prolonged life filled with
quality and comfort. John D. Rockefeller summed the American thought process up so
well when he said, “I do not think there is any other quality so essential to success of any
kind as the quality of perseverance. It overcomes almost everything, even nature. ”19
But
that belief, which has contributed so much to making Americans themselves so
successful, simply is not self-evident when it comes to efforts to stave off death as a
result of old age. Nature and the cycle of life win one hundred percent of the time.
19
http://www.finestquotes.com/author_quotes-author-John%20D.%20Rockefeller-page-
0.htm
Page 30 0f 62
Woody Allen adds his perspective to the basic problem that we 21st
Century Americans
are facing when he stated, “I don't want to achieve immortality through my work... I want
to achieve it through not dying.”20
The concept of hospice care itself is not new. But the business model of hospice
care in the United States wasn’t included in the Medicare program until 1983. In 1967 a
woman named Cicely Saunders founded St. Christopher’s Hospice in London. The goal
of this hospice was to provide dying patients with treatments that would make them more
comfortable as they passed through the end of their lives. These patients, today
numbering in the millions, may not be receiving curative treatments for their diseases or
illnesses but are still faced with so many issues including but far from limited to pain,
hunger, fear, anxiety, depression, confusion, lack of memory, embarrassment, shame,
inability to verbally communicate, loneliness, despair, unable even to control their own
body parts. Hospice serves not to prevent the oncoming death but to make it feel less
horrible to the patient. Perhaps even to allow the dying person to feel comfort, love and a
gentle form of support. By the time a person or their family members choose hospice
care, they have forsaken further attempts at curative care. It’s that intermediate range of
care between the two that may enable our aging population to face their life cycle in a
new and better way.
Dame Cicely Saunders was a highly educated woman; a nurse, social worker,
physician and pharmacology researcher. The program she originally established to
support the terminally ill has been duplicated and even enhanced in America today by
countless others. While the issues of staffing, funding, educating the caregivers and so
many more are far from answered in nursing home, assisted living and rehabilitation
20
http://www.quotationspage.com/quotes/Woody_Allen
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centers, hospice is one of the answers to this impending medical crisis. One of the goals
of using advance directives is to provide information to family members and medical
staff about the care each of us would like to receive in our final days/months on Earth. If
hospice care is the choice that a person would like to make when the time presents itself,
it is critical that that information is available to those who will need it to make the
arrangements for that care.
Another way of addressing terminal illnesses in the elderly is often referred to as
intermediate care but this type of service is rarely offered or studied. “The medical
profession tends not to consider intermediate care because physicians assume that
patients are interested either in life-prolongation or in comfort care,”21
p. 43 according to
Dr. Gillick, Associate Director of the Geriatrics Fellowship Program at Harvard Medical
School and in clinical practice at the Hebrew Rehabilitation Center for Aged in Boston.
There are actually other choices, which an advance directive may provide for a patient
decades after drafting it. There are statistical odds associated with medical treatments; at
one level it is a gambling game. Intermediate care is best described as a treatment
methodology somewhere in between aggressive and statistically doomed-to-fail care for
the terminally ill elderly and the comfort/hospice type care for those in the final throes of
dying. This type of treatment protocol considers the multitude of side effects including
but far from limited to the development of new diseases, treatment and hospital related
infections, acute pain, mental disorientation, lengthy recuperation periods, lower levels of
ability to function physically, the withdrawal from many types of post-operative drugs
and abject fear and provides information to the patient and family members about the
21
Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press.
Page 32 0f 62
alternatives available.
Medicare, in its current modus operandi, does not support intermediate
care very well. Medicare supports, through the various ways it pays for services provided,
the use of high-tech rather than low-tech care, institutional care versus home care, and
treating illnesses as if they were all acute rather than simply chronic and not ever going to
be ‘cured.’
One reason for this lack of offering of immediate care options has been attributed
to the training American physicians receive beginning in medical school. Death is the
enemy and is to be fought off at all costs. The costs in capital, i.e. Medicare spending,
and human suffering terms are not really considered. “But the potential to cause needless
pain and suffering while simultaneously breaking the bank is at its greatest as we get
closer to the very end of life. The temptation to keep on the fight, to summon the heavy
artillery, is enormous when death is the alternative. The truth is that at the very end of
life, death is no longer an ‘alternative’ --- a locution that suggests there is another
possibility. Death is the only possible outcome. What we can control is not whether or
not we die, but the style in which we do it.”22
P 63 And that ‘bank’ that Dr. Gillick refers
to is not the patients piggy bank. It is the Medicare tax dollars being collected from the
working Americans at the time the patient is using his/her medical benefits.
SUPPORT, a widely publicized research study funded by the Robert Wood
Johnson Foundation (RWJF) between 1989 and 1994, found that in excess of 80% of
hospitalized dying patients in America experienced the three following conditions:
* Still died in uncontrolled pain
* Were hooked up to machines until just a few hours before they died
22
Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press.
Page 33 0f 62
* Did not, for the most part, have Advance Health Care Directives such as a
living will; even if a patient had an advance directive, it was often not followed23
.
Having an Advance Health Care Directive and ensuring that it was followed
might have prevented the first two conditions. Advance Health Care Directives or living
wills are not meant replace new and helpful components and methods of delivery of
health care for the elderly. Medicare is now funding chronic care improvement programs
and teaching about disease management so that patients and their caregivers can make
changes that may to lead longer and healthier lives lived by the aging population. But
these good programs do not change the fact that at some point in time, we are dying and
that has become the most expensive time in our lives.
2 Who Argues for and against What Options
2.1 Politics: usual and unusual
The following quote, often cited not in it’s correct version, was in a speech made
by Richard D. Lamm, former Colorado governor and now director of the Center for
Public Policy and Contemporary Issues at the University of Denver, "We've got a duty to
die and get out of the way with all of our machines and artificial hearts and everything
else like that and let the other society, our kids, build a reasonable life." This speaks
directly to the issue that our lives are not permanent here on Earth and that the expense of
prolonging and attempting to extend them beyond a time that allows us to actually live
them is not in the best interest of our society and it’s members.
2.2 Religious institutions
As a part of the opposition against the proposed 2000 Death with Dignity
23
http://www.rwjf.org/pr/topic.jsp?topicid=1194&p=os
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legislation in the State of Maine, the Christian Civic League added to the fight, in total
disagreement with Governor Lamm that, “passage of this legislation might make Maine a
state in which our elderly may feel an obligation to die” (Health 2000). And when it
comes right down to it, the obligation may not be to die but not to charge the America
people a very large amount of money and resources to try to live longer for a short period
of time.
Not all Americans, of any age, are going to agree with this position regardless of
the costs associated with it. A 90 year old woman ‘suffering’ from advanced Alzheimer’s
disease was being kept alive because her daughters had religious convictions that
supported their belief that suffering was of little consequence compared to the
immeasurable value of life itself. So she was treated for pneumonia by oxygen, Tylenol
and a morphine drip. From there she was transferred to an acute care hospital where she
was hooked up to a respirator. She then had a heart attack and stress ulcer. Add to this the
intravenous catheters inserted in her veins, the extensive blood transfusions and the
details that all the while the elderly patient herself was attempting, and sometimes able, to
remove them. At this point, she hadn’t been able to eat for over a year so just providing
nutrition to her was a challenge. If I wanted to punish my parent(s) or spouse, I can’t
think of a better system for succeeding in my aims.
The National Conference of Catholic Bishops issued a directive on health
care by asserting that ‘a person has a moral obligation to use ordinary or
proportionate means of preserving life. But even these conservation stalwarts of
religious morality explain that “proportionate means are those that in the judgment
of the patient offer a reasonable hope of benefit and do not entail an excessive
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burden or impose excessive expense on the family or the community.” 24
The
woman, whose Alzheimer’s and other illnesses were described above, wasn’t
making any such judgments at this point in her life and her daughters, in their
expressed love, did not incorporate either ‘reasonable hope’ or ‘excessive burden’
in to their decision making process. I do not care to receive any of the ‘benefits’
that she was being subjected to in my future phases of life.
These issues are not new and they are not in anyway unique to the
American experience of the 21st
century. As the esteemed philosopher Sir Thomas
More wrote about in 1515 in his book Utopia, “Let’s face it, you’ll never be able to
live a normal ife. You’re a nuisance to other people and a burden to yourself – in
fact you’re really leading a sort of posthumous existence. So why go on feeding
germs? Since your life’s a misery to you, why hesitate to die? You’re imprisoned in
a torture-chamber – why don’t you break out and escape to a better world? Or say
the word, and we’ll arrange for your release. It’s only common sense to cut your
losses. It’s also an act of piety to take the advice of a priest, because he speaks for
God.”
It wasn’t about cash then but actual resources in the community. Sir
Thomas More even had the audacity to incorporate the Catholic Church’s alleged
approval of the decision that a person could/should make to end their life in its final
stages. Almost five hundred years ago and the same discussions were going on for
the same reasons. Medical treatments have improved in a geometric progression but
there still is an end to human life and we are still going to die when we have
24
Ethical and Religious Directives for Catholic Health Care Services, Fourth Edition
NCCB/USCC, June 15, 2001, United States Conference of Catholic Bishops, Inc.
Page 36 0f 62
reached that time.
In the Helga Wanglie law case, the court decided the case strictly as a
guardianship matter and did not address the appropriateness of treatment issue. Nor
was it asked to do so by either party. No new or more cost effective rulings were a
result of this women’s long drawn out end-of-life story. Yet, “Perhaps there will be
fewer Helga Wanglie if facilities ensure that patients upon admission learn about
"advance directives" - as well as about the mess that can occur when they fail to
make their wishes clear.”25
2.3 The harm that may be caused by forcing Americans to explore, research, learn
about and make informed decisions about their own death
Daniel Hillyard summed it up so well when he stated, “we chronicle the
growing awareness of the shortcomings of medicalized dying the concomitant
perception that there exists a “right way” – meaning a desirable way – to die.”26
Dying is not a task that is high on my list of things I want to do anytime in the near
future. Nor do I want my close family members or friends to be a part of this
process. But neither of those emotional feelings change the fact that one day, in the
far future I hope, the time will come. When I am eighty-three years old, spending
$800,000 or more on keeping me alive a few more months does not make a lot of
financial sense to me. Name the hospital room for me, send a kid to medical school,
pay for research on some non-fossil fuel energy source, do a lot of things that my
life stood for but don’t charge the working Americans and their children to
25
Capron, Alexander Morgan. Publication: The Hastings Center Report. September 1
1991
26
http://www.articlearchives.com/law-legal-system/trial-procedure-judges/989493-1.html
Page 37 0f 62
accomplish this goal of extending my life beyond the time I was meant to die.
“Might ever there come a point when hundreds of thousands of dollars spent on life
support for one person in an irreversible coma should be redirected to, say,
immunizations or prenatal care for scores of others?”27
p. 50 As a part of this thesis
process, I, proud owner for many years of an outdated living will, have also
completed the attached advance healthcare directives. I didn’t know about them,
their purpose or why it was important to our great nation that we fill them out
before I researched this Medicare crisis.
7 Advance Health Care Directives as One Component of the Proactive Changes That
Must be Made to Medicare/Medicaid service to save some portion of it
2.4 As members, both givers and takers, in a society there are rights and
responsibilities within each system
Perhaps what this topic is really about is rights and responsibilities. No one wants
to loudly proclaim, “take all those dying old people out of the hospital beds and send
them home and let them die!” It wouldn’t be popular with the voters, the politicians
would have to speak out for the elderly, the church ladies would be forced to spend extra
prayer time on all the ill old folks, and the senior citizens themselves would feel fear and
not loved. None of this changes the fact that terminally ill and dying elderly Americans
were once not terminally ill and dying. We have the responsibility to act in the best
interest of our nation and our children when we accept our right to take the vast amount
of Medicare dollars from those Americans working to pay our health care bills.
27
Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook
for Professionals. Chicago: American Bar Association.
Page 38 0f 62
2.5 Unless those members are willing to also assume the responsibilities for themselves
they have the ability to bring down an entire society, the people and the structure
Most terminally ill and dying elderly people created their own future footprint on
planet Earth when they reproduced offspring. They must be willing, when they are still
able, to plan for their own future and the future of their offspring. There are monetary
efficiencies inherent in this framework for the future and they must be considered by each
adult when making their own advance directive decisions. Is it the intent of a working
mother named Shellie, aged thirty-nine, that her seven-year old son spend almost three
cents of every dollar that he and his wife earn starting in about twenty-six years on her
health care and if so, is Shellie willing to put that in writing. Or if Shellie is faced with
immanent death as a result of a terminal illness, would she prefer that her son and
daughter-in-law save their hard-earned income for the college expenses for their own
children or spend it on extending her life. These are not easy questions to face yet face
them we must. The costs continue to rise, the percentage of Americans working to pay
them continues to decline and we’re all getting older.
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Conclusion
2.6 Economic issues such as lack of incentives, fairness issue, efficiency of
expenditures
The use of advance planning and living wills has the ability to greatly alter the
way we in America deal with death and dying in our elderly population. Reducing the
costs associated with this final stage of our life is just one of the benefits, and one that
may allow our existing system to operate without huge infusions of new cash. Without
this and other changes, we simply won't have the financial resources in place to support
our existing Medicare + Medicaid systems as they incorporate the large numbers of Baby
Boomers.
While I may choose to limit the number and types of aggressive medical treatments
that I receive during my end-of-life care, my spouse may feel differently and request the
most aggressive types of care regardless of whether they’ll have a positive impact on the
quantity or quality of his life. In my case, there will probably be a positive result on the
cost of my end-of-life care to the American workers. In my husband’s case, it could still
result in the million dollar, in 2009 dollars, expenditures described in Helga Wanglie’s
treatments.
In the Pew research survey, fewer than 44% of Americans say they would ask to
end care if they had an illness that made them totally dependent on another person for all
of their care. Another 38% responded that they would want the most ‘aggressive’ care
provided and everything done to save them. The numbers are a close: 42%, please halt
treatment. 43%, don’t halt treatment. There’s actually been a small increase reported,
since 1991, in the percentage who say they want everything done medically under these
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scenarios which doesn’t bode at all well for the oncoming Medicare challenges.28
p. 6
The U.S. federal Patient Self Determination Act (PSDA) includes in part (A)(i)
“an individual’s rights under State law (whether statutory or as recognized by the courts
of the State) to make decisions concerning such medical care, including the right to
accept or refuse medical or surgical treatment and right to formulate advance directives
(as defined in paragraph (3)), and (ii) the written policies of the provider or organization
respecting the implementation of such rights.” The existing problem with this very good
statute is that it is presented to adults when admitted to a hospital, skilled nursing facility
or hospice program or when under the care of a home health agency. Once again; too
little, too late. By this time in an adult’s life-cycle-ending point they may not be able,
willing or even conscious to make such types of decisions. The second major problem is
that it is completely voluntary so no one is currently required to have made such
provisions for themselves should they become faced with the need. My thesis advocates
requiring all American’s who accept Medicare benefits to have a legal Advance Health
Care Directive in place. The transaction itself must occur by the time they turn sixty-five
years of age and become eligible for the program and not when they are elderly, ill, frail,
incapacitated in a multitude of ways and reliant on others to make their decisions for
them.
Using Advance Health Care Directives can prevent a person’s final health care
decisions from being made by a court appointed guardian. Instead, they will be based on
your values, spiritual beliefs, wishes for a lasting contribution to the future of your
28
Pew Research Center for The People & The Press. (2006). More Americans Discussing
– and Planning – End-of-Life Treatment STRONG PUBLIC SUPPORT FOR RIGHT TO
DIE. http://www.pewtrusts.org/news_room_detail.aspx?id=23572
Page 41 0f 62
society and country. They are not permanent and can be removed completely or changed
with just the words being spoken from your mouth. “If near death and struggling to
breath, the patient suddenly was to gasp, “Save me! Save me! Don’t let me go!” the
directive would have to be disregarded and heroic life-sustaining measure (e.g., a
ventilator) started.” P. 629
Due to the lack of a federal Advance Health Care Directive,
and relying totally on the fifty state-issued or attorney drafted versions, we are not using
the Advance Health Care Directives to full advantage. Yet if we are able to reduce the
proportion of the people currently using the thirty to thirty five percent of all Medicare
expenditures in that last year of their life by half to just 2.5%, then they will only be
spending five times the amount the other 97.5% of the Medicare population claims. The
ethics of advance health directives are a whole other paper but a small component that
bears referencing here is the question of whether a level of care either so remarkably
extraordinary or so patently future as to compromise scarce societal resources, thereby
diminishing the just level of care that might be afforded to others.” Scarcity versus
abundance, unlimited amounts of capital versus finite amounts of money continue to be
the basis of the oncoming crisis.
Each of the fifty states has some form of the Advance Health Care Directive. I
have included the Illinois version of both the directive and a living will, signed and sealed
by me, in this paper. They are legal and binding across state lines but not in other
countries. And the directives, if not enforced, don’t provide much remedy to the dying
patient. There is some irony in the fact that, to date, Advance Health Care Directives are
not viewed as a constitutional issue at the federal level in spite of the small detail that it is
29
Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook
for Professionals. Chicago: American Bar Association.
Page 42 0f 62
a federal program, Medicare, that pays for all the health care services provided to the
dying people.
The Pew Research Center conducted a survey in 2005 among 1,500 adults, and
found that while overall attitudes among Americans are largely stable, people are more
actively thinking about and planning for their own medical treatment in the event of a
terminal illness or incapacitating medical condition. The aging of the population could be
the cause of this increased planning process. Public awareness of living wills, already
widespread in 1990, is now virtually universal. The good news is the number saying they
have a living will has more than doubled – from just 12% in 1990 to 29% today.30
p. 1
The bad news is that means approximately 71% of Americans do not have living wills
today.
The process of drafting an Advance Health Care Directive, a living will or any
other legal instrument is not intended to be fun. It probably will not be anticipated with
glee by many Americans faced with doing it, for mandatory or elective reasons. Some
people may experience the pain that reliving past experiences with deceased relatives
may bring up for them. Others may fear illness and death and this process forces them to
face this fear head on and still finish their legal document. Still others hold the process of
death itself to be a part of their religious faith and do not believe it either their
responsibility or option to address. There are those of us who sometimes believe that if
we ignore something, it will not come to pass, but death is yet another one of those things
that ignoring doesn’t seem to have any affect on. Whether we want to do this or not, it
30
Pew Research Center for The People & The Press. (2006). More Americans Discussing
– and Planning – End-of-Life Treatment STRONG PUBLIC SUPPORT FOR RIGHT TO
DIE. http://www.pewtrusts.org/news_room_detail.aspx?id=23572
Page 43 0f 62
doesn’t change the economic crisis rapidly approaching us.
Another important, non-economic result of this change may be to teach Americans
that dying is a natural part of our life cycle and that it may not always be bad. Death with
comfort, palliative care and dignity may be the way some of us choose to end our lives,
not as recipients of lengthy, painful, frightening and non-curative medical care at
unsustainable expense to our national healthcare system for the elderly.
Page 44 0f 62
Bibliography
Aaron, H., Lambrew, J. (2008). Reforming Medicare: options, tradeoffs, opportunities.
Washington, D.C.: Brookings Institution Press.
Aaron, H., Schwartz, W., Cox, M. (2005). Can We Say No? The Challenge of Rationing
Health Care. Washington, D.C.: Brookings Institution Press.
Battin, M., Francis, L., Landesman, B., (2007). Death, Dying and the Ending of Life,
Volume II.
Hampshire, England: Ashgate Publishing Company.
Barnes, J. (2008). Nothing To Be Frightened Of. New York: Alfred A. Knopf.
Sandra Beckwith. Journal of Palliative Medicine. Winter 1999, 2(4): 377-381.
doi:10.1089/jpm.1999.2.377.
Blank, R., Merrick, J. (2005), End-of-life decision making: a cross-national study.
Massachusets: MIT Press.
Drane, J., (2003), More Humane Medicine: A Liberal Catholic Bioethics. Pennsylvania:
Edinboro University Press.
Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press.
Gillick, M. (1994). Choosing Medical Care in Old Age: What Kind, How Much, When to
Stop. Cambridge: Harvard University Press.
Hillyard, D. (2001). Dying right: the death with dignity movement. New York:
Routledge
Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook for
Professionals. Chicago: American Bar Association.
2008 ANNUAL REPORT OF THE BOARDS OF TRUSTEES OF THE FEDERAL HOSPITAL
INSURANCE AND FEDERAL SUPPLEMENTARY MEDICAL INSURANCE TRUST FUNDS
www.cms.hhs.gov/reportstrustfunds/downloads/tr2008.pdf
STATEMENT OF ILLINOIS LAW ON ADVANCE HEALTH CARE DIRECTIVES
AND DNR ORDERS http://www.idph.state.il.us/public/books/advin.htm
Compassion & Choices Launches Nation's Only Patient-Centered Care Web Site
Main Category: Palliative Care / Hospice Care
The Medicare Modernization Act of 2003 Centers for Medicare and Medicaid Services
funding demonstration programs for chronically ill patients. Disease management
Page 45 0f 62
programs for Medicare beneficiaries with congestive heart failure, diabetes and chronic
obstructive pulmonary disease.
LONG-TERM FISCAL OUTLOOK
Long-Term Federal Fiscal Challenge Driven Primarily by Health Care
Statement of Gene L. Dodaro, Acting Comptroller General of the United States,
Testimony Before the Committee on Finance, U.S. Senate
United States Government Accountability Office, June 17, 2008
The Patient Self Determination Act 42 USCA Section 1395cc
Pew Research Center for The People & The Press. (2006). More Americans Discussing –
and Planning – End-of-Life Treatment STRONG PUBLIC SUPPORT FOR RIGHT TO
DIE. http://www.pewtrusts.org/news_room_detail.aspx?id=23572
Page 46 0f 62
STATEMENT OF ILLINOIS LAW
ON ADVANCE HEALTH CARE DIRECTIVES AND DNR ORDERS
You have the right to make decisions about the health care you get now and in the future.
An advance directive is a written statement you prepare about how you want your
medical decisions to be made in the future, if you are no longer able to make them for
yourself. A do not resuscitate order (DNR order) is a medical treatment order that says
cardiopulmonary resuscitation (CPR) will not be used if your heart and/or breathing
stops.
Federal law requires that you be told of your right to make an advance directive when
you are admitted to a health-care facility. Illinois law allows for the following three types
of advance directives: (1) health care power of attorney; (2) living will; and (3) mental
health treatment preference declaration. In addition, you can ask your physician to work
with you to prepare a DNR order. You may choose to discuss with your health-care
professional and/or attorney these different types of Advance Health Care Directives as
well as a DNR order. After reviewing information regarding Advance Health Care
Directives and a DNR order, you may decide to make more than one. For example, you
could make a health care power of attorney and a living will.
If you have one or more Advance Health Care Directives and/or a DNR order, tell your
health-care professional and provide them with a copy. You may also want to provide a
copy to family members, and you should provide a copy to those you appoint to make
these decisions for you.
State law provides copies of sample Advance Health Care Directives forms. In addition,
this webpage provides a copy of these forms and a copy of the Illinois Department of
Public Health (IDPH) Uniform Do Not Resuscitate (DNR) Advance Directive.
Health Care Power of Attorney
The health care power of attorney lets you choose someone to make health-care decisions
for you in the future, if you are no longer able to make these decisions for yourself. You
are called the "principal" in the power of attorney form and the person you choose to
make decisions is called your "agent." Your agent would make health-care decisions for
you if you were no longer able to makes these decisions for yourself. So long as you are
able to make these decisions, you will have the power to do so. You may use a standard
health care power of attorney form or write your own. You may give your agent specific
directions about the health care you do or do not want.
The agent you choose cannot be your health-care professional or other health-care
provider. You should have someone who is not your agent witness your signing of the
power of attorney.
The power of your agent to make health-care decisions on your behalf is broad. Your
Page 47 0f 62
agent would be required to follow any specific instructions you give regarding care you
want provided or withheld. For example, you can say whether you want all life-sustaining
treatments provided in all events; whether and when you want life-sustaining treatment
ended; instructions regarding refusal of certain types of treatments on religious or other
personal grounds; and instructions regarding anatomical gifts and disposal of remains.
Unless you include time limits, the health care power of attorney will continue in effect
from the time it is signed until your death. You can cancel your power of attorney at any
time, either by telling someone or by canceling it in writing. You can name a backup
agent to act if the first one cannot or will not take action. If you want to change your
power of attorney, you must do so in writing.
Living Will
A living will tells your health-care professional whether you want death-delaying
procedures used if you have a terminal condition and are unable to state your wishes. A
living will, unlike a health care power of attorney, only applies if you have a terminal
condition. A terminal condition means an incurable and irreversible condition such that
death is imminent and the application of any death delaying procedures serves only to
prolong the dying process.
Even if you sign a living will, food and water cannot be withdrawn if it would be the only
cause of death. Also, if you are pregnant and your health-care professional thinks you
could have a live birth, your living will cannot go into effect.
You can use a standard living will form or write your own. You may write specific
directions about the death-delaying procedures you do or do not want.
Two people must witness your signing of the living will. Your health-care professional
cannot be a witness. It is your responsibility to tell your health-care professional if you
have a living will if you are able to do so. You can cancel your living will at any time,
either by telling someone or by canceling it in writing.
If you have both a health care power of attorney and a living will, the agent you name in
your power of attorney will make your health-care decisions unless he or she is
unavailable.
Mental Health Treatment Preference Declaration
A mental health treatment preference declaration lets you say if you want to receive
electroconvulsive treatment (ECT) or psychotropic medicine when you have a mental
illness and are unable to make these decisions for yourself. It also allows you to say
whether you wish to be admitted to a mental health facility for up to 17 days of treatment.
You can write your wishes and/or choose someone to make your mental health decisions
Page 48 0f 62
for you. In the declaration, you are called the "principal" and the person you choose is
called an "attorney-in-fact." Neither your health-care professional nor any employee of a
health-care facility in which you reside may be your attorney-in-fact. Your attorney-in-
fact must accept the appointment in writing before he or she can start making decisions
regarding your mental health treatment. The attorney-in-fact must make decisions
consistent with any desires you express in your declaration unless a court orders
differently or an emergency threatens your life or health.
Your mental health treatment preference declaration expires three years from the date you
sign it. Two people must witness you signing the declaration. The following people may
not witness your signing of the declaration: your health-care professional; an employee of
a health-care facility in which you reside; or a family member related by blood, marriage
or adoption. You may cancel your declaration in writing prior to its expiration as long as
you are not receiving mental health treatment at the time of cancellation. If you are
receiving mental health treatment, your declaration will not expire and you may not
cancel it until the treatment is successfully completed.
Do-Not-Resuscitate Order
You may also ask your health-care professional about a do-not-resuscitate order (DNR
order). A DNR order is a medical treatment order stating that cardiopulmonary
resuscitation (CPR) will not be attempted if your heart and/or breathing stops. The law
authorizing the development of the form specifies that an individual (or his or her
authorized legal representative) may execute the IDPH Uniform DNR Advance Directive
directing that resuscitation efforts shall not be attempted. Therefore, a DNR order
completed on the IDPH Uniform DNR Advance Directive contains an advance directive
made by an individual (or legal representative), and also contains a physician’s order that
requires a physician’s signature.
Before a DNR order may be entered into your medical record, either you or another
person (your legal guardian, health care power of attorney or surrogate decision maker)
must consent to the DNR order. This consent must be witnessed by two people who are
18 years or older. If a DNR order is entered into your medical record, appropriate
medical treatment other than CPR will be given to you. This webpage provides a copy of
the Illinois Department of Public Health (IDPH) Uniform Do Not Resuscitate (DNR)
Advance Directive that may be used by you and your physician. This webpage also
provides a link to guidance for individuals, health-care professionals and health-care
providers concerning the IDPH Uniform DNR Advance Directive.
What happens if you don't have an advance directive?
Under Illinois law, a health care "surrogate" may be chosen for you if you cannot make
health-care decisions for yourself and do not have an advance directive. A health care
surrogate will be one of the following persons (in order of priority): guardian of the
Page 49 0f 62
person, spouse, any adult child(ren), either parent, any adult brother or sister, any adult
grandchild(ren), a close friend, or guardian of the estate.
The surrogate can make all health-care decisions for you, with certain exceptions. A
health care surrogate cannot tell your health-care professional to withdraw or withhold
life-sustaining treatment unless you have a "qualifying condition," which is a terminal
condition, permanent unconsciousness, or an incurable or irreversible condition. A
"terminal condition" is an incurable or irreversible injury for which there is no reasonable
prospect of cure or recovery, death is imminent and life-sustaining treatment will only
prolong the dying process. "Permanent unconsciousness" means a condition that, to a
high degree of medical certainty, will last permanently, without improvement; there is no
thought, purposeful social interaction or sensory awareness present; and providing life-
sustaining treatment will only have minimal medical benefit. An "incurable or
irreversible condition" means an illness or injury for which there is no reasonable
prospect for cure or recovery, that ultimately will cause the patient's death, that imposes
severe pain or an inhumane burden on the patient, and for which life-sustaining treatment
will have minimal medical benefit.
Two doctors must certify that you cannot make decisions and have a qualifying condition
in order to withdraw or withhold life-sustaining treatment. If your health care surrogate
decision maker decides to withdraw or withhold life-sustaining treatment, this decision
must be witnessed by a person who is 18 years or older. A health care surrogate may
consent to a DNR order, however, this consent must be witnessed by two individuals 18
years or older.
A health care surrogate, other than a court-appointed guardian, cannot consent to certain
mental health treatments, including treatment by electroconvulsive therapy (ECT),
psychotropic medication or admission to a mental health facility. A health care surrogate
can petition a court to allow these mental health services.
Final Notes
You should talk with your family, your health-care professional, your attorney, and any
agent or attorney-in-fact that you appoint about your decision to make one or more
Advance Health Care Directives or a DNR order. If they know what health care you
want, they will find it easier to follow your wishes. If you cancel or change an advance
directive or a DNR order in the future, remember to tell these same people about the
change or cancellation.
No health-care facility, health-care professional or insurer can make you execute an
advance directive or DNR Order as a condition of providing treatment or insurance. It is
entirely your decision. If a health-care facility, health-care professional or insurer objects
to following your advance directive or DNR order then they must tell you or the
individual responsible for making your health-care decisions. They must continue to
provide care until you or your decision maker can transfer you to another health-care
provider who will follow your advance directive or DNR order.
Page 50 0f 62
Last updated June 27, 2006
Page 51 0f 62
Living Will�
DECLARATION
This declaration is made this __________ day of_____________________________(month,
year).
I, ___________________________________________________, being of sound mind, willfully
and voluntarily make known my desires that my moment of death shall not be artificially
postponed.
If at any time I should have an incurable and irreversible injury, disease, or illness judged to be a
terminal condition by my attending physician who has personally examined me and has
determined that my death is imminent except for death delaying procedures, I direct that such
procedures which would only prolong the dying process be withheld or withdrawn, and that I be
permitted to die naturally with only the administration of medication, sustenance, or the
performance of any medical procedure deemed necessary by my attending physician to provide
me with comfort care.
In the absence of my ability to give directions regarding the use of such death delaying
procedures, it is my intention that this declaration shall be honored by my family and physician as
the final expression of my legal right to refuse medical or surgical treatment and accept the
consequences from such refusal.
Signed________________________________________________________________________
City, County and State of Residence
___________________________________________________________________
The declarant is personally known to me and I believe him or her to be of sound mind. I saw the
declarant sign the declaration in my presence (or the declarant acknowledged in my presence that
he or she had signed the declaration) and I signed the declaration as a witness in the presence of
the declarant. I did not sign the declarant’s signature above for or at the direction of the declarant.
At the date of this instrument, I am not entitled to any portion of the estate of the declarant
according to the laws of intestate succession or, to the best of my knowledge and belief, under
any will of declarant or other instrument taking effect at declarant’s death, or directly financially
responsible for declarant’s medical care.
Witness________________________________________________________________________
Witness________________________________________________________________________
Page 52 0f 62
Power of Attorney
for Health Care�
Illinois Statutory Short Form
(NOTICE: the purpose of this power of attorney is to give the person you designate (your
“agent”) broad powers to make health care decisions for you, including power to require,
consent to or withdraw any type of personal care or medical treatment for any physical or mental
condition and to admit you to or discharge you from any hospital, home or other institution. This
form does not impose a duty on your agent to exercise granted powers; but when powers are
exercised, your agent will have to use due care to act for your benefit and in accordance with this
form and keep a record of receipts, disbursements and significant actions taken as agent. A court
can take away powers of your agent if it finds the agent is not acting properly. You may name
successor agents under this form but not co-agents, and no health care provider may be named.
Unless you expressly limit the uration of this power in the manner provided below, until you
revoke this power or a court acting on your behalf terminates it, your agent may exercise the
powers given here throughout your lifetime, even after you become disabled. The powers you
give your agent, your right to revoke those powers and the penalties for violating the law are
explained more fully in sections 4-5, 4-6, 4-9 and 4-10(b) of the Illinois “Powers of Attorney for
Health Care Law” of which this form is a part. That law expressly permits the use of any
different form of power of attorney you may desire. If there is anything about this form that you
do not understand, you should ask a lawyer to explain it to you.)
POWER OF ATTORNEY made this __________ day
of___________________________(month, year).
1. I,__________________________________________________________________________
(insert name and address of principal)
hereby appoint:_________________________________________________________________
(insert name and address of agent)
as my attorney-in-fact (my “agent”) to act for me and in my name (in any way I could act in
person) to make any and all decisions for me concerning my personal care, medical treatment,
hospitalization and health care and to require, withhold or withdraw any type of medical
treatment or procedure, even though my death may ensue. My agent shall have the same access to
my medical records that I have, including the right to disclose the contents to others. My agent
shall also have full power to authorize an autopsy and direct the disposition of my remains.
Effective upon my death, my agent has the full power to make an anatomical gift of the following
(initial one):
Any organ:
Specific organs:
(The above grant of power is intended to be as broad as possible so that your agent will have
authority to make any decision you could make to obtain or terminate any type of health care,
Page 53 0f 62
including withdrawal of food and water and other life-sustaining measures, if your agent believes
such action would be consistent with your intent and desires. If you wish to limit the scope of
your agent’s powers or prescribe special rules or limit the power to make an anatomical gift,
authorize autopsy or dispose of remains, you may do so in the following paragraphs.)
2. The powers granted above shall not include the following powers or shall be subject to the
following rules or limitations (here you may include any specific limitations you deem
appropriate, such as: your own definition of when life-sustaining measures should be withheld; a
direction to continue food and fluids or life-sustaining treatment in all events; or instructions to
refuse any Illinois Statutory Short Form Power of Attorney for Health Care
Page 2
specific types of treatment that are inconsistent with your religious beliefs or unacceptable to
you for any other reason, such as blood transfusion, electro-convulsive therapy, amputation,
psychosurgery, voluntary admission to a mental institution, etc.):
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
(The subject of life-sustaining treatment is of particular importance. For your convenience in dealing
with that subject, some general statements concerning the withholding or removal of life-sustaining
treatment are set forth below. If you agree with one of these statements, you may initial that statement;
but do not initial more than one):
_____ I do not want my life to be prolonged nor do I want life-sustaining treatment to be provided or
continued if my agent believes the burdens of the treatment outweigh the expected benefits. I want
my agent to consider the relief of suffering, the expense involved and the quality as well as the
possible extension of my life in making decisions concerning life-sustaining treatment.
_____ I want my life to be prolonged and I want life-sustaining treatment to be provided or continued
unless I am in a coma which my attending physician believes to be irreversible, in accordance with
reasonable medical standards at the time of reference. If and when I have suffered irreversible
coma,
_____ I want life-sustaining treatment to be withheld or discontinued. I want my life to be prolonged to
the greatest extent possible without regard to my condition, the chances I have for recovery or the
cost of the procedures.
(This power of attorney may be amended or revoked by you in the manner provided in section 4-6 of the
Illinois “powers of attorney for health care law” (see the back of this form). Absent amendment or
revocation, the authority granted in this power of attorney will become effective at the time this power is
signed and will continue until your death, and beyond if anatomical gift, autopsy or disposition of
remains is authorized, unless a limitation on the beginning date or duration is made by initialing and
completing either or both of the following:)
Page 54 0f 62
Initialed
Initialed
Initialed
3.( ) This power of attorney shall become effective on____________________________________ (insert
a future date or event during your lifetime, such as court determination of your disability, when you want this power to first take
effect)
4.( ) This power of attorney shall terminate on__________________________________________
______________________________________________________________________________
(insert a future date or event, such as court determination of your disability, when you want this power to terminate prior to your
death)
(If you wish to name successor agents, insert the names and addresses of such successors in the following
paragraph.)
5. If any agent named by me shall die, become incompetent, resign, refuse to accept the office of agent or
be unavailable, I name the following (each to act alone and successively, in the order named) as
successors to such agent:
______________________________________________________________________________
______________________________________________________________________________
(continued)
Illinois Statutory Short Form Power of Attorney for Health Care Page 3
For purposes of this paragraph 5, a person shall be considered to be incompetent if and while the person is
a minor or an adjudicated incompetent or disabled person or the person is unable to give prompt and
intelligent consideration to health care matters, as certified by a licensed physician.
(If you wish to name your agent as guardian of your person, in the event a court decides that one should
be appointed, you may, but are not required to, do so by retaining the following paragraph. The court
will appoint your agent if the court finds that such appointment will serve your best interests and welfare.
Strike out paragraph 6 if you do not want your agent to act as guardian.)
6. If a guardian of my person is to be appointed, I nominate the agent acting under this power of attorney
as such guardian, to serve without bond or security.
7. I am fully informed as to all the contents of this form and understand the full import of this grant of
powers to my agent.
Signed________________________________________________________________________
(principal)
The principal has had an opportunity to read the above form and has signed the form or acknowledged his
or her signature or mark on the form in my presence.
____________________________Residing at_________________________________________
(witness)
Page 55 0f 62
(You may, but are not required to, request your agent and successor agents to provide specimen
signatures below. If you include specimen signatures in this power of attorney, you must complete the
certification opposite the signatures of the agents.)
Specimen signatures of agent (and successors) I certify that the signatures of my agent (and
successors) are correct.
________________________________ ________________________________________
(agent) (principal)
________________________________ ________________________________________
(successor agent) (principal)
________________________________ ________________________________________
(successor agent) (principal)
Page 56 0f 62
Beth Kljajic Thesis 5-19-09
Beth Kljajic Thesis 5-19-09
Beth Kljajic Thesis 5-19-09
Beth Kljajic Thesis 5-19-09
Beth Kljajic Thesis 5-19-09
Beth Kljajic Thesis 5-19-09

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Beth Kljajic Thesis 5-19-09

  • 1. An Economic Exploration of the Role of Mandated Advance Health Care Directives in Medicare's Financing Crisis By Beth Kljajic Advisor: Prof. Victor Lima A Thesis Submitted to the University of Chicago in partial fulfillment of the requirements for the degree of Master of Liberal Arts Graham School of General Studies
  • 2. (June, 2009) Abstract The oldest of the 72 million American "Baby Boomers" - those Americans born between 1946 and 1964 - will be eligible for Medicare in 2011. By the year 2030, the beneficiaries enrolled in Medicare are projected to rise from 46 million to 78 million. Without a change in our current system, Medicare + Medicaid could grow to over 1/3 of GDP, an untenable level. The number of workers paying taxes to support beneficiaries is projected to decline from 3.7 workers per beneficiary to just 2.4 workers per beneficiary. As of September 30, 2007, the projected expenditures for Medicare benefits paid under today’s standards exceed earmarked revenues (i.e., dedicated payroll taxes and premiums) by $34 trillion. Currently, 30 to 35 percent of Medicare expenditures are spent on just five percent of the elderly in the last year of their lives. This breaks down to for every one hundred dollars spent on one hundred Medicare recipients, thirty-five dollars will be spent on just five people leaving the other ninety-five people together spending the remaining sixty-five dollars. On average those five dying people will spend ten times what the other ninety-five people spent. One strategy for reducing astronomical end-of- life medical costs is to require all beneficiaries of Medicare / Medicaid to have End-of- Life Directives. This paper will explore the political and economic implications of advance health care directives and their potential as an effective, choice-based intervention in the exploding cost of health care for the elderly, particularly those among them that are in the last twelve months of their lives. Page 2 0f 62
  • 3. 1 The Impending Financial Crisis for the Medicare/Medicaid Programs 1.1 The Demographics, aging and changing health care needs of the American population 1.2 Financial projections for the not very distant future 1.3 Knowledge may be powerful; give Americans the information they need to make decisions for their own lives and to take personal accountability for those decisions 1.4 Description of Advance Health Care Directives 2 The purpose and history of the Medicare/Medicaid Program for the Elderly 2.1 A Legislative Plan for America’s Elderly 2.2 The changing field of medicine and what that means for Medicare/Medicaid services in the 21st Century 3 The Americans who are affected by this crisis Page 3 0f 62
  • 4. 3.1 Those current Medicare/Medicaid beneficiaries and those members of the Baby Boom generation who will begin to join in the next two years 3.2 The current members of the American workforce who are paying the taxes to support this system 3.3 Future generations of Americans who will be requiring to continue this system and its heavy debt load 4 The Current Method of Providing Medical Services to Medicare/Medicaid Beneficaries 4.1 Actual case studies about Medicare/Medicaid beneficiaries that happened in the last fifteen years 4.2 American Healthcare and our somewhat unique approach to old age 5 Other Options for Medical Services for the Elderly 5.1 How other nations treat this issue: Rationing and Death with Dignity Laws 5.2 Educating Americans on the life cycle of the species 6 Who Argues for and against What Options 6.1 Politics: usual and unusual 6.2 Religious institutions 6.3 The harm that may be caused by forcing Americans to explore, research, learn about and make informed decisions about their own death 6.4 Economic issues such as lack of incentives, fairness issue, efficiency of expenditures 7 Advance Health Care Directives as One Component of the Proactive Changes That Must be Made to Medicare/Medicaid service to save some portion of it 7.1 As members, both givers and takers, in a society there are rights and responsibilities within each system 7.2 Unless those members are willing to also assume the responsibilities for themselves they have the ability to bring down an entire society, the people and the structure Page 4 0f 62
  • 5. 1 The Impending Financial Crisis for the Medicare/Medicaid Programs 1.1 The Demographics, aging and changing health care needs of the American population The oldest of the 72 million American "Baby Boomers" – those people born in the post war years of 1946 to 1964 - will be eligible for government funded health insurance programs in 2011. Without a change in our current system, Medicare + Medicaid – the programs for those 65 years of age and older with additional funding for the low income elderly, could grow to over 1/3 of GDP, an untenable level. This one third of the GDP will not be able to be invested in productive alternatives such as the education of the people in our nation or any other, national or local infrastructure development, research and development of new sources of energy, better agricultural methods, environmental safety for the whole planet, new technology in dozens of fields or a multitude of other valuable purposes. Instead much of it will be spent on prolonging the life, without regard to its quality, of terminally ill people entering the final phases of their lives. As the system works now, one of every three cents produced in this country will be directed towards this endeavor. A very wise man, Peter Peterson summed it up by saying, “Global aging is like a massive iceberg which very well could destroy even the most powerful economic vessels in the world.”1 1 P. Peterson, Gray dawn: How the Coming Age Wave will Transform America and World, (New York: Random House, 2000). Page 5 0f 62
  • 6. 1.2 Financial projections for the not very distant future The Financial Threat Economics of this issue are the root of this problem. If our nation had limitless resources, there would be no dilemma in terms of addressing the future health care costs of our aging population and the burden thereby placed on current and future generations of working Americans who will be paying for it. But we do not have unlimited funds, and in good economic times or bad, we must make conscientious and carefully planned choices about how to allocate the funds that we do have. The demands on those funds will be substantial, but those demands must be tempered by the seriousness and magnitude of the implications of the choices we make regarding the way we care for our aging and elderly members of our population. From 2010 to 2030, the number of people on Medicare is projected to rise from 46 million to 78 million, while the number of workers paying taxes to support beneficiaries is projected to decline from 3.7 workers per beneficiary to 2.4 workers per beneficiary.2 The frightening financial projections continue. As of September 30, 2007, the projected expenditures for the benefits paid under today’s standards exceed earmarked revenues (i.e., dedicated payroll taxes and premiums) by approximately $41 trillion over the next 75 years in present value terms. Of that $41 trillion , $34 trillion is related to Medicare programs.3 P. 7 And the ‘earmarked revenues’ are based on dedicated payroll 2 www.kaisernetwork.org Medicare Spending and Financing Fact Sheet Information provided by the Medicare Policy Project Publication Number: 7305-03 Publish Date: 2008-09-02 3 GAO-08-912T Statement of Social Insurance in the 2007 Financial Report of the Page 6 0f 62
  • 7. taxes that are also projections which do not reflect the economic downturn starting in late 2008. Thirty-four trillion is a very large number of dollars to be short for a program which is planning to cover the health care costs for more than one hundred million people during the same seventy-five year period. 1.3 Knowledge may be powerful; give Americans the information they need to make decisions for their own lives and to take personal accountability for those decisions There are many options available to America and its citizens for dealing with this crisis. From an economic perspective, unlike the ethical, religious, moral perspectives, there are no right or wrong answers. What won’t change is the fact that Americans are an aging population. What’s important is that we face, discuss, research and incorporate one or more of the components that will allow us to control this rapidly on-coming financial threat and to benefit as a society from these changes. In 2000, Bill Moyer produced and anchored an award winning Public Broadcasting System television series titled, On Our Own Terms. It is the basis of a national outreach effort to encourage discussion and community action on end-of-life issues. It is available on-line and is a well-produced program discussing a wide range of contents. It omitted one ‘minor’ detail: how to finance the Medicare system. Nor did it address how the dying elderly in the final year of their life use such a large portion of available Medicare dollars. This subject is neither politically correct, religiously correct and nor a fun one to debate over a nice hike in the mountains of Arizona. But that does not change the fact that we are short at least $34 trillion and that we must find a way to either finance or change this program and must do it in the very near future. United States Government Page 7 0f 62
  • 8. There are many options open to the American people on how to deal with this oncoming financial crisis. None will appeal to all. Some will be favored by some of the people. Some will be favored by other members of our population. Some people will not like any changes at all. And our elected officials, religious leaders, powerful lobby organizations, medical communities and insurance companies all will impart their ideas and wisdom upon the issue. What I propose is not the answer to end of all answers. Instead, there is a very simple legal process, available at no cost to the population in all fifty states. Advance Health Care Directives are a device to help people prepare and take responsibility for their own future, decades before most of them will ever need to use the decisions they’ve made. The strategy I’m proposing for beginning the process of reducing the astronomical government funded health insurance programs end-of-life medical costs is to require all beneficiaries of Medicare / Medicaid to have End-of-Life Directives starting before they receive the first cent from the program. This paper will explore the political and economic implications of Advance Health Care Directives and their potential as an effective, choice-based intervention in the exploding cost of health care for the elderly, particularly those among them that are in the last twelve months of their lives. Page 8 0f 62
  • 9. 1.4 Description of Advance Health Care Directives An Advance Health Care Directive is a legal instrument, recognized and formulated in each of the fifty states, that describes how a person wants his or her medical decisions made ‘in the event of decisional or communicative incapacity’4 p xix. It is different than a Living Will; you name an agent to make your medical decisions for you in the event you are no longer able. That named agent is assigned the power of attorney to do so. Living Wills may be limited to direct instructions about your end-of-life care which can and are be problematic if what happens to you isn’t covered in the instruction set. These legal instruments are written based completely on your personal preferences and may or may not actually decrease Medicare spending on an individual basis. 4 Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook for Professionals. Chicago: American Bar Association. Page 9 0f 62
  • 10. 2 The Purpose and History of the Medicare/Medicaid Program for the Elderly 2.1 A Legislative Plan for America’s Elderly Contrary to the heated public debate over the subject, the United States of America does actually have a federal health care coverage and insurance program. The largely unspoken issue with this program is that it is only for those Americans who are very poor, children, the disabled or those aged sixty-five or older, mostly this latter group. It’s the working poor and employed-but-uninsured people who choose not to purchase their own health insurance policies, the very people paying Medicare payroll taxes, who are not included in our federal health care coverage programs. Both the uninsured and insured working Americans who pay their Medicare payroll taxes to support those elderly currently participating in the government funded health insurance programs are a part of the 3.7 workers per Medicare beneficiary that is working itself down to just 2.4 workers per Medicare beneficiary in the not very distant future. The Medicare program itself just celebrated its 44th birthday. Medicare and Medicaid were signed in to law in 1965 under President Lyndon B. Johnson; they passed in the House with a vote of 313-115 and in the Senate 68-21. Actuaries at the time estimated that the monetary costs of the bill which passed was about $3 billion a year; that is an equivalent number to about $19 billion in 2007 dollars.5 A variety of groups opposed the original legislation for an equal variety of reasons. The American Medical association (AMA) suggested the program would ‘endanger the relationship between patients and doctors’ according to its then President, Donovan Ward. A B-movie actor, originally from the State of Illinois, was emerging as a political force and starting in 1947 5 Aaron, H., Lambrew, J. (2008). Reforming Medicare: options, tradeoffs, opportunities. Washington, D.C.: Brookings Institution Press. Page 10 0f 62
  • 11. served seven years as the Screen Actors Guild (SAG) President. At this point in his career he was a Democrat but would later switch parties and serve as both a Governor and U.S. President. His name was Ronald Reagan and he spoke strongly about Medicare being a program that would invite socialism which would then ‘invade every area of freedom in this country.” I researched the Internet in an attempt to learn the total amount of Medicare dollars spent in his final year when he was dying from complications of Alzheimer’s disease. I was unable to ascertain a financial cost but perhaps he was correct to worry about lost freedom; he certainly lost his, due to his Alzheimer’s. “Today, Medicare beneficiaries with Alzheimer’s account for 34 percent of Medicare spending, even though they constitute only 12.8 percent of the population over the age of 65. With the nation’s 77 million baby boomers approaching old age, the number of Americans with the disease and associated costs are projected to soar.”6 President Reagan spoke to us about this very issue when he stated, “I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer's Disease... At the moment I feel just fine. I intend to live the remainder of the years God gives me on this earth doing the things I have always done... I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead. Thank you, my friends. May God always bless you.”7 The questions he left open were how long that sunset of his life was going to last according to God, how much money it would cost the American taxpayer to fund it and whether he still valued those “sunset” years given that he’d lost all his freedom due to Alzheimer’s are different issues. 6 http://seniorjournal.com/NEWS/Alzheimers/4-06-24Breakthroughs.htm 7 "The Alzheimer's Letter". PBS. http://www.pbs.org/wgbh/amex/reagan/filmmore/reference/primary/alzheimers.html. Page 11 0f 62
  • 12. 2.2 The changing field of medicine and what that means for Medicare/Medicaid services in the 21st Century Medical science in the past fifty years has afforded us with life saving technologies unavailable to those who lived before our times. There are so many enhanced treatments now and more emerging every day. From vaccines against polio to chemotherapy for cancer patients to dialysis equipment to coronary angiography for open-heart surgery. Add artificial heart valves, better antibiotics, ventilators and the list keeps expanding. These new forms allow medical professionals to both treat and expand the lives of millions of people who in earlier times would have succumbed to their illnesses. But none of these advances, to date, has changed the fact that humans only live a certain number of years and at some point will die of causes related to old age itself. The elderly and frail and ill part of population may or may not benefit from all these new forms of medical treatment. The very word ‘benefit’ itself has been one of the focal points of disagreement between the people and organizations beginning to address this issue. What is a benefit and how should it be defined? Quality of life versus quantity of life begins to take a larger part of the decision making at this point. But by the time most adults have reached ‘this point’ it’s to late to start the discussion. Page 12 0f 62
  • 13. 3 The Americans who are affected by this crisis 3.1 Those current Medicare/Medicaid beneficiaries and those members of the Baby Boom generation who will begin to join in the next two years While Medicare is totally digitally-run the numbers are never quite as clear as they should be. In 2007 approximately 36.9 million people of the age of sixty-five and another 7.2 million disabled people (of all ages) are covered by the Medicare insurance program. Total benefits paid were $425 billion. Income was $462 billion and expenditures were $432 billion. Assets held in special issue U.S. Treasury securities grew to $369 billion.8 There are multiple components to the program and more effective, usually better pieces are being added. The first is Part A which is the Hospital Insurance (HI) covering inpatient services, home health care, nursing homes, assisted living and hospice care. A worker, and his/her spouse, must have paid Medicare payroll taxes for at least forty quarters (ten years total) to be eligible for this portion of the program for free.9 8 2008 ANNUAL REPORT OF THE BOARDS OF TRUSTEES OF THE FEDERAL HOSPITAL INSURANCE AND FEDERAL SUPPLEMENTARY MEDICAL INSURANCE TRUST FUNDS 9 http://questions.medicare.gov/cgi-bin/medicare.cfg/php/enduser/std_adp.php? p_faqid=2100 Page 13 0f 62
  • 14. 3.2 The current members of the American workforce who are paying the taxes to support this system The 3.7 workers per Medicare beneficiary, who today fund the Medicare program, do so by paying a 2.9% payroll tax that is levied on all their earned income. It does not have a maximum earnings cap as, for instance, does the Social Security/FICA payroll tax. There is a deductible amount of $1,068 per illness (2009), for each Medicare participant when they enter the hospital. After that time, Medicare pays the rest of the hospital costs for sixty days; there may be more ‘cost’ sharing by the Medicare beneficiary after the sixty-day period. Medicare Part B, known as the Supplemental Medical Insurance (SMI), covers costs including for Medicare eligible physician services, outpatient hospital services, certain home health services and durable medical equipment. Even though the names are similar/same, it is not Medicare Supplemental Insurance which have government mandated coverage requirements and may be purchased from private insurance providers. Participants in Part B buy their coverage, usually withdrawn from Social Security checks. The government so heavily subsidizes this program that it would be difficult to find a private insurance provider who could effectively compete with the prices and coverage Page 14 0f 62
  • 15. provided. There are income-based determinants for the premium amounts for Medicare Part B coverage but the 99% of Americans qualify for the lowest amount of $95.4010 . The table below shows the premium for 2009:11 You Pay If Your Yearly Income is Monthly Premium Single Married Couple $96.40 $85,000 or less $170,000 or less $134.90 $85,001-$107,000 $170,001-$214,000 $192.70 $107,001-$160,000 $214,001-$320,000 $250.50 $160,001-$213,000 $320,001-$426,000 $308.30 Above $213,000 Above $426,000 According to the paper, "Senior Century: A Legislators' Guide to Seniors' Health Care Issues," written by Merrill Matthews, Jr., Ph.D. and Jim Frogue for the Council of Affordable Health Insurance the federal government pays for 75% of Part B costs out of general revenues. The premiums and a $135.00 deductible (2009) paid by the beneficiaries don’t come close to covering the costs of the program itself. The 1970 average per beneficiary cost of $356 is to $1,902.42 in 2007 dollars. But today, as of 2007, the average per beneficiary cost is $10,460; more than five times higher than the adjusted amount paid out in 1970 for each Medicare beneficiary. While the system is continually changing, there are not enough changes happening quickly enough to address the impending crisis. Medicare+Choice program, or Part C, was enacted by the Congress in 1997. This was the first time the Medicare program allowed seniors to leave traditional Medicare and join a private sector health 10 http://www.cms.hhs.gov/apps/media/press/factsheet.asp? Counter=3272&intNumPerPage=10&checkDate=1&checkKey=&srchType=1&numDay s=7&srchOpt=0&srchData= &keywordType=All&chkNewsType=6&intPage=&showAll=1&pYear=&year=0&desc= &cboOrder=date 11 https://questions.medicare.gov/cgi-bin/medicare.cfg/php/enduser/std_adp.php?p_ faqid=2099&p_sid=L_uk7Quj&p_lva=2100 Page 15 0f 62
  • 16. plan, usually in the form of an HMO. That initial change in the program has been updated by Medicare Advantage which itself was enacted in November of 2003. Most Americans reading this paper will be aware of the latest legislation passed since it was so widely covered in all types of press and media. The Medicare prescription drug benefit was scheduled to begin in 2006. And Medicaid covers many of the costs associated with this new prescription drug program for any low-income elderly beneficiaries. This portion of the benefits is still new, constantly changing and far from being a complete answer to the prescription drug problem(s). Why Advance Health Care Directives Would Be an Effective Component of the Solution “Health care expenditures in the United States exceeded $2 trillion in 2006 and are expected to rise rapidly during the next decade. A disproportionate share is spent at the end of life (EOL). Thirty percent of Medicare expenditures are attributable to 5% of beneficiaries who die each year; about one-third of the expenditures in the last year of life is spent in the last month. Previous investigations have found that most of these costs result from life-sustaining care (eg, mechanical ventilator use and resuscitation), with acute care in the final 30 days of life accounting for 78% of costs incurred in the final year of life. A recent study using data from a longitudinal multi-institutional cohort study, Coping With Cancer (CWC), showed that End Of Life conversations between patients and physicians are associated with fewer life-sustaining procedures and lower rates of intensive care unit (ICU) admission. These findings suggest that EOL discussions might reduce health care expenditures by reducing the use of ICU care by patients with cancer. Singer and Lowy have suggested that policies asking patients about their wishes Page 16 0f 62
  • 17. regarding life-sustaining treatment and incorporating them into Advance Health Care Directives might result in cost savings by reducing undesired care at the EOL. However, other researchers have not found an association between Advance Health Care Directives and cost reduction. To our knowledge, the association between patient-reported discussions of EOL care preferences with their physicians and health care expenditures has not been well studied.”12 12 Health Care Costs in the Last Week of Life Associations With End-of-Life Conversations Baohui Zhang, MS; Alexi A. Wright, MD; Haiden A. Huskamp, PhD; Matthew E. Nilsson, BS; Matthew L. Maciejewski, PhD; Craig C. Earle, MD; Susan D. Block, MD; Paul K. Maciejewski, PhD; Holly G. Prigerson, PhD Arch Intern Med. 2009;169(5):480-488. Page 17 0f 62
  • 18. 5 Other Options for Medical Services for the Elderly 1.4 How other nations treat this issue: Rationing and Death with Dignity Laws America is not alone in facing this issue. Many countries including Japan, Italy, Germany, among others have populations more aged than the United States and are reproducing even fewer babies, who will at some point enter the workforce and pay their taxes, to compensate for the increasing number of elderly. Thousands and thousands of pages could be written about the different methodologies for addressing this societal dilemma. Almost all countries with nationalized health care programs, such as the United Kingdom, Canada and France, have chosen rationing as a significant component of their methodology. They simply don’t treat specific illnesses in people older than a pre- determined age. And they make if very difficult for medical professionals to offer pay- for-services to patients who can afford to go outside of the national healthcare system. Some states, including Oregon and Washington, as well as countries such as the Netherlands, Belgium, Albania and Luxembourg, allow for either active euthanasia or physician-assisted suicide. Other countries such as Switzerland, where it is not legal, choose not to take any legal or punitive actions against doctors who perform euthanasia. While it appears that these forms of euthanasia are gaining increasing support in many countries, the number of people actually using the legal forms of self-determination is still very small. Most of the people who do appear to be using this form of life ending medicine are not elderly; they are terminally ill and suffering because of their illness and its treatments. Many nations do not now, nor will they in the future, have the economic resources Page 18 0f 62
  • 19. to provide these life-sustaining services to the terminally ill elderly or even to their young people. The real question is does any nation, rich or poor, have the financial wherewithal to provide curative medical services to their aging populations in the final year or years of their lives. The Greek and Roman ‘phases’ of life were multiples of seven and were “understood to be a part of the natural order.” Due to the lack of studies related to Advance Health Care Directives, their ability to positively impact the end-of-life medical care costs for the elderly has not been proved or disproved. I suggest, based on the simple fact that nearly 35% of Medicare+Medicaid dollars are now currently spent on the final months of life for terminally ill patients, that the evidence for profound cost savings were Advance Health Care Directives to become mandated will manifest itself quickly. And given the above referenced limited number of studies that were performed regarding advanced health care directives for use as a tool reducing the Medicare costs for the elderly recipients in the last year of their life, they have the ability to make significant differences in the types of care we choose to receive for ourselves in the future. Advance Health Care Directives place the decision-making for the end of each person's life in his or her own hands – not in the hands of the State, not in the hands of their adult children and grandchildren, not in the hands of their religious leaders, not in the hands of the legal system or even their own doctors – at a time when they are willing and able to make such decisions. They may be influenced by others, but during a time in their life cycle when they are healthy and can inform themselves about options and make educated plans, not at a time when they are already terminally ill. This concept is about personal responsibility, accountability and self-determinization. If we are given the facts Page 19 0f 62
  • 20. including the monetary costs, the effects of curative treatments and the statistical odds of success, when we are healthy adults we may choose to make decisions that will have dramatic cost containment results on our medical care in the final days of our lives. Based on the statistics cited in this section, many or even most Americans could and may select end of life health care options that will reduce the costs of their medical care in the last months of their lives and even provide them with significant palliative care that will make them more comfortable and to allow them to die with dignity instead of hooked up to endless and futile machines and treatments. Dignity is not engraved in stone; different people, different religions, different cultures, different socio-economic stratus all have views of what dignity is. Yet by allowing, even mandating, American adults to make these type of decisions prior to their terminal illness they can then demonstrate their personal understanding of dignity. Through an advance directive, they will be able to ensure that they are treated in a way, or in what they currently believe is a way, which will afford them the highest level of dignity in the final throes of death. There are no right or wrong answers and each person may choose for his or herself their own answer. Up until the 1950’s most American’s died in their own homes lacking the types of medical services, machinery and medications that are available in the 21st century. Data from the National Vital Statistics System (NVSS), which collects death certificate records from all fifty states, shows that more than seventy percent of our population currently dies in hospitals, nursing homes and assisted living centers. Due to this huge proportion of the dying elderly spending their final days in medical care facilities, 30 to 35 percent of Medicare expenditures are now spent on just five percent of the elderly in the last year Page 20 0f 62
  • 21. of their lives. This breaks down to for every one hundred dollars spent on one hundred Medicare recipients, thirty-five dollars will be spent on just five people. The other ninety- five people together spend the remaining sixty-five dollars. On average those five dying people will spend ten times what the other ninety-five people spent. To discuss these Medicare+Medicaid tax dollars as a national resource and to imply that there are better allocations for our tax spending is an unpopular position to broach. Politicians and government bureaucrats who must take these kinds of stands and make these types of decisions are faced with some unpleasant realities. Perhaps we, the people, can help them begin to address these difficult types of issues by taking care of our own spending and ourselves. If those five dying elderly Medicare recipients were aware, long before they reached the time of age and terminal illness in their lives, of what the financial costs would be to extend their life another thirty or sixty days, they might not choose to do so. Each person entering the Medicare program should be told in a brief and concise way that their own health care treatment costs will be paid for by 2.4 American workers being taxed 2.9% of their income. Given that information, some of these Medicare+Medicaid beneficiaries-to-be might have serious thoughts about how they will use those dollars. I argue that given these facts, many Americans would, through the use of advance directives, make different choices for themselves than are currently being made by family members, medical professionals and courts. And, through this method of mandated Advance Health Care Directives, Americans would begin to decide on and sign their own at much earlier ages and during better periods of health. Medicare+Medicaid may have been designed correctly for the medical science Page 21 0f 62
  • 22. available at the time it began, 1965, and is still able to provide beneficial coverage to healthy people who have a disease that may be treated and cured. It may never have been intended to take care of those dying, terminally ill elderly passing away in hospitals and nursing homes. In the Denial of Aging book, Dr. Gillick cites another of her publications and describes Medicare as “favoring institutional care over home care, it supports technology-intensive treatment rather than labor-intensive care, and it fails to provide adequately for chronic diseases.13 She identifies countless ways to recreate Medicare for our aging population. Rationing, Death-with-Dignity laws like those in the states of Oregon and Washington, higher co-pays and gaps in coverage are all discussed. This paper is not about those concepts but about a simple way of encouraging and requiring adults to make their own end-of-life health care decisions well in advance of that time. What Should the End-Result Goal be In Providing Medical Care to the Elderly First, I should define what the term elderly means in this paper. As defined by http://www.merriam-webster.com/dictionary/elderly it means basically nothing. 1 a: rather old; especially : being past middle age b: old-fashioned 2: of, relating to, or characteristic of later life or elderly persons. As the Baby Boomer generation is so fond of saying, “Fifty is the new thirty.” We consider ourselves to be just starting middle age at fifty. This generation continues to be strong, healthy, independent members of our society. But at some point in our life spans, we will begin to reach the end of the cycle itself. It may be at sixty-five years of age, the current number for entry in to the Medicare system. It may be at eighty-nine years of age, 13 Gillick, M., Mitchell, S. (2004), A Framework for Meaningful Medicare Reform, Journal of Aging and Social Policy, 16:1-12. Page 22 0f 62
  • 23. the time when we are no longer able to walk eighteen holes of golf. It may be at the grand age of one hundred, when we still walk to work, enjoy our wine with dinner and tell stories of Asian travel in the 1920’s, while we can’t remember what happened yesterday. So it’s not an age carved in stone anywhere but it is a definite phase of life that we, as all living creatures do, will experience. This does not have to be a bad process. If we are provided with care to help us be more comfortable, experience less pain and fear, we may be able to pass through the dying stages with dignity and grace. Dr. Muriel Gillick sums it up so clearly when she states, “The goal of screening tests and physical examinations in old age is not to stave off death, a hopeless and counterproductive aim. “14 p. 36 One of the components of this difficult subject matter is the issue of what kind of care should actually be provided to the elderly and terminally ill aged-patient. There is curative care, that we provide and finance for our elderly today, whose goal is to cure the disease or illness from which the patient is suffering. A seventy- eight year old woman, with a past history of heart disease and surgeries for both her heart and her lung cancer, is not going to be ‘cured’ of her current valve blockage and cancer in her remaining lung. She is going to die; the question is at what financial cost to the Medicare system, suffering how many types of side effects from her treatments and with a quality of life that she may not have selected if given the option, either currently or at an earlier point of time in her life. 14 Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press Page 23 0f 62
  • 24. 4 The Current Method of Providing Medical Services to Medicare/Medicaid Beneficaries 4.1 Actual case studies about Medicare/Medicaid beneficiaries that happened in the last fifteen years Dr. Gillick describes four factors as affecting the decision making process in the care of an elderly person. First the low effectiveness ratio of possible treatments, next the high burden related to medical care imposed on the patient, financial costs and imminent, impending death. She describes the actual experiences of one of her patients in great detail and speaks to the issue of burden of her treatments that, while unable to increase her life for much longer, did cause her to “feel pain – her moans, her grimaces, and her expressive eye movements in response to painful stimuli…”15 p. 74. The woman whose case was written about had two daughters managing her health care and treatments. Given that this woman was at the time of her death ninety years old, her daughters must both have been at least sixty years old each. They even admitted that their mother had never spoken about wanting her life prolonged in this type of torturous way and that she did not practice a religion that forced it upon her. The daughters themselves felt bound to subject her to these treatments as a result of their own religious convictions. The type of religion itself wasn’t mentioned but at most other times of a persons life, if they were being treated in such a painful way it would usually be considered abusive and not allowed even under the separation of church and state laws. And, of course, it wasn’t the daughter’s money that was being spent on subjecting their dying mother to these types of invasive and unsuccessful, in terms of saving her life, treatments. It was the American taxpayers money. 15 Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press Page 24 0f 62
  • 25. The following law case serves as an example of the serious nature of these types of decisions especially when left undecided until a patient is dying or family members, suffering from their own anguish, have to make them. Dr. Ronald E. Cranford, working in his role at Hennepin County Medical Center asked the Fourth Judicial District Court, Hennepin County, Minnesota to help decide who makes the final decision regarding the ongoing treatments for an 88-year-old woman, Helga Wanglie, who was a patient at the hospital and was currently being kept alive by a Ventilator system, although she was in a coma. Her hospital treatments began on December 14, 1989 when Mrs. Wanglie slipped on a rug in her Minneapolis home and broke her hip. The hip fracture itself was successfully treated and she was discharged to a nursing home. She was re-admitted to HCMC on January 1, 1990, seventeen days after the first accident happened, when she developed respiratory failure and was placed on a respirator. Due to continuing respiratory problems, the hospital was unable to wean Mrs. Wanglie from the respirator, and on May 7, 1990 she was transferred to another facility that specializes in the care of respirator- dependent patients. She experienced a cardiopulmonary arrest on May 23. She was resuscitated and then transferred to another acute care hospital in St. Paul. All the medical professionals involved in her care now felt that she had extremely severe and irreversible brain damage. Because of this prognosis, and the seemingly futile chances of her improving, a hospital ethics committee reviewed her case and the doctors discussed with her family limiting or stopping further life-sustaining treatment. Her family refused to accept this limitation of services and requested that Mrs. Wanglie be transferred back to HCMC, where they felt she had received Page 25 0f 62
  • 26. excellent care. Keep in mind that what they described as excellent care did nothing at all to improve the quality of Mrs. Wanglie’s life; it just kept her alive longer. Since May 31, 1990 and the patient was readmitted to HCMC, she has been vigorously treated with continued respirator support, antibiotics for recurrent pneumonia, artificial feeding, and treatment for electrolyte and fluid imbalance. In complete agreement with the medical professionals at St. Paul’s acute care hospital, the initial diagnosis upon readmission to HCMC was persistent vegetative state secondary to severe hypoxic-ischemic encephalopathy. Repeated evaluations by the neurology and pulmonary medicine services confirmed the diagnosis of permanent unconsciousness (persistent vegetative state), and permanent respirator dependency because of chronic lung disease. All the same issues referred to in this paper previously were part of Mrs. Wanglie’s experience. Her advanced age, previous lengthy hospital stays at HCMC in early 1990, multiple medical complications, unsuccessful weaning from the respirator, and neurologic condition, the medical staff caring for Mrs. Wanglie on a daily basis viewed her prognosis as extraordinarily poor. They did not believe that the respirator could benefit her. But this leads back to the question of what is a benefit and who is receiving it? Her immediate family--her husband, daughter, and son--insisted that all forms of treatment be continued. Her family members did agree to a Do Not Resuscitate (“DNR”) order if she sustained another heart attack given that recovery, in her persistent vegetative state, from any cardiac arrest would be extraordinarily unlikely. Oliver Wanglie claimed to understand that due to her current status his wife Page 26 0f 62
  • 27. is unaware of herself, her surroundings and his visits. When asked, repeatedly and by multiple professionals, if he understood the medical diagnosis itself and that his wife would not recover consciousness or improve in any significant way, he replied, "That may be true, but we hope for the best." A major component of the current legal dilemma is the definition of ‘the best’ and who decides what that is. Yet neither this law case nor this paper is attempting to address that definition. We, as healthy adults, may attempt to define this by our own Advance Health Care Directive; then it will not be in the hands of a court to decide for us. The family's continued refusal to discontinue treatment is based on their religious and personal belief system. Mr. Wanglie has stated that only God can take life and that doctors should not play God. Prior to December he told hospital staff that his wife had not discussed these issues, and that her views were a "black box." What Mr. Wanglie did not address was why he believed that life sustaining medical treatments in the form of high levels of technology, machinery, prescription medications, endless hospitals and expensive labor costs were part of God’s plan, not that of man. Let’s for a moment agree to support his belief system and agree that only God could take life; the good Lord seemed to be doing his/her best to take his wife from this world. Man/woman, in the form of medical professionals, were being asked by him, Mr. Wanglie, to prevent this from happening. To return to the 1991 Minnesota case, Oliver Wanglie wrote, "My wife always stated to me that if anything happened to her so that she could not take care of herself, she did not want anything done to shorten or prematurely take her life." Unfortunately, Mrs. Wanglie never wrote anything like this when she was capable Page 27 0f 62
  • 28. and still healthy. And, to date, since the inception of her fall and hip surgery, Mrs. Wanglie’s care had now cost Medicare and Physicians' Health Plan, a private supplementary insurance plan that the Wanglie’s purchased, $800,000; in 1991 dollars. The amount in 1991 dollars has the same buying power as $1,246,361.23 in 2009. And that doesn’t take in to account the larger sized increases in medical inflation; it’s an ‘average’ number.16 The hospital asked the court to appointment a conservator, not her family member(s), to represent the patient to decide whether continued treatment is appropriate. It did not directly request the court to discontinue treatment immediately over the objections of the family. They asked for the court’s assistance in this issue so that her family cannot make the demand that physicians continue to give treatment that is not in the patient's best personal medical interest. $800,000 is a lot of money to spend on a person in a vegetative state, who is in the natural process of dying and who will never even know it was spent. This is not in anyone’s medical interest, expensive or not, and should never be undertaken in this country for any of the seventy seven million baby boomers whose lives are just beginning to enter their own final stages. The court ruled in Mr. Wanglie’s favor and appointed him guardian of his wife in the final days of her life. She died three days after the court ruling. 4.2 American Healthcare and our somewhat unique approach to old age There may be several ways to provide care to the elderly, particularly the terminally ill elderly. The first is to seek to extend their lives without regard to what the type of life we may be able to extend for them will be like. Confined to a bed, hooked up 16 http://www.bls.gov/data/inflation_calculator.htm Page 28 0f 62
  • 29. to one or more life-sustaining machines, medicated to a level to prevent pain, suffering and human discourse, completely dependent on others, some known and maybe related to and some not known, for their care. This care may be provided in their own home, in a hospital setting, a nursing home or in a center for assisted living. This curative approach may in fact work for some number of the elderly population. Their lives may be extended by years and they may be healthy and productive. This form of “maximally aggressive”17 p. 42 may be due to fact that in America patients appear to be offered only two forms of treatment: the curative form and comfort care such as hospice. The SUPPORT study, that is the main source of information used regarding American preferences for the care of seriously ill hospitalized adults, only offered those two options to the people responding. The one they left out is defined as intermediate care; care that may not extend their lives the same number of days but will give them options as to the side effects, quality and methods for living out their last days. And the costs they, as the future recipients of Medicare benefits, feel should be expended by the American people on those last ninety, one hundred and eighty or three hundred days. Today, the second most often provided care, after curative, is called palliative (comfort) care or hospice care. It’s became a part of the Medicare system in 1983 and provides care for patients with less than six months to live. “Palliative treatment: To palliate a disease is to treat it partially and insofar as possible, but not cure it completely. Palliation cloaks a disease. Also sometimes called symptomatic treatment.” 18 The root of the English word palliative is derived from the Latin "pallium"; a type of cloak in ancient Greece and Rome. The use of the word pallium later emerged as a white woolen band 17 Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press. 18 http://www.medterms.com/script/main/art.asp?articlekey=10703 Page 29 0f 62
  • 30. with pendants in front and back worn by leaders of the Roman Catholic church including the pope or an archbishop as a symbol of full Episcopal, or universal, authority. As that old Latin word continued it’s forward motion to contemporary meaning it began to be either an adjective such as "cloaked" or "concealed" or a verb meaning "to cloak," "to cloth," or "to shelter." The reason for bringing up this palliative or symptomatic form of medical treatment is that the purpose of these treatments is not curative or to cure the disease itself. These types of treatments are intended to clock or conceal the symptoms of the disease and by doing so perhaps shelter the person from its negative effects. Treating the symptoms is a markedly different approach than treating the disease itself. The American culture is not one that easily accepts losing; the medical professional in our country are far from alone in their belief. So many of our beliefs are based on the premise that if you give it one hundred percent effort, put your best faith efforts forward, you will eventually find success. Unfortunately, for the dying and frail elderly person, this is not so. No amount of effort, no amount of financial expense, no amount of medical treatment will bring success in terms of a prolonged life filled with quality and comfort. John D. Rockefeller summed the American thought process up so well when he said, “I do not think there is any other quality so essential to success of any kind as the quality of perseverance. It overcomes almost everything, even nature. ”19 But that belief, which has contributed so much to making Americans themselves so successful, simply is not self-evident when it comes to efforts to stave off death as a result of old age. Nature and the cycle of life win one hundred percent of the time. 19 http://www.finestquotes.com/author_quotes-author-John%20D.%20Rockefeller-page- 0.htm Page 30 0f 62
  • 31. Woody Allen adds his perspective to the basic problem that we 21st Century Americans are facing when he stated, “I don't want to achieve immortality through my work... I want to achieve it through not dying.”20 The concept of hospice care itself is not new. But the business model of hospice care in the United States wasn’t included in the Medicare program until 1983. In 1967 a woman named Cicely Saunders founded St. Christopher’s Hospice in London. The goal of this hospice was to provide dying patients with treatments that would make them more comfortable as they passed through the end of their lives. These patients, today numbering in the millions, may not be receiving curative treatments for their diseases or illnesses but are still faced with so many issues including but far from limited to pain, hunger, fear, anxiety, depression, confusion, lack of memory, embarrassment, shame, inability to verbally communicate, loneliness, despair, unable even to control their own body parts. Hospice serves not to prevent the oncoming death but to make it feel less horrible to the patient. Perhaps even to allow the dying person to feel comfort, love and a gentle form of support. By the time a person or their family members choose hospice care, they have forsaken further attempts at curative care. It’s that intermediate range of care between the two that may enable our aging population to face their life cycle in a new and better way. Dame Cicely Saunders was a highly educated woman; a nurse, social worker, physician and pharmacology researcher. The program she originally established to support the terminally ill has been duplicated and even enhanced in America today by countless others. While the issues of staffing, funding, educating the caregivers and so many more are far from answered in nursing home, assisted living and rehabilitation 20 http://www.quotationspage.com/quotes/Woody_Allen Page 31 0f 62
  • 32. centers, hospice is one of the answers to this impending medical crisis. One of the goals of using advance directives is to provide information to family members and medical staff about the care each of us would like to receive in our final days/months on Earth. If hospice care is the choice that a person would like to make when the time presents itself, it is critical that that information is available to those who will need it to make the arrangements for that care. Another way of addressing terminal illnesses in the elderly is often referred to as intermediate care but this type of service is rarely offered or studied. “The medical profession tends not to consider intermediate care because physicians assume that patients are interested either in life-prolongation or in comfort care,”21 p. 43 according to Dr. Gillick, Associate Director of the Geriatrics Fellowship Program at Harvard Medical School and in clinical practice at the Hebrew Rehabilitation Center for Aged in Boston. There are actually other choices, which an advance directive may provide for a patient decades after drafting it. There are statistical odds associated with medical treatments; at one level it is a gambling game. Intermediate care is best described as a treatment methodology somewhere in between aggressive and statistically doomed-to-fail care for the terminally ill elderly and the comfort/hospice type care for those in the final throes of dying. This type of treatment protocol considers the multitude of side effects including but far from limited to the development of new diseases, treatment and hospital related infections, acute pain, mental disorientation, lengthy recuperation periods, lower levels of ability to function physically, the withdrawal from many types of post-operative drugs and abject fear and provides information to the patient and family members about the 21 Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press. Page 32 0f 62
  • 33. alternatives available. Medicare, in its current modus operandi, does not support intermediate care very well. Medicare supports, through the various ways it pays for services provided, the use of high-tech rather than low-tech care, institutional care versus home care, and treating illnesses as if they were all acute rather than simply chronic and not ever going to be ‘cured.’ One reason for this lack of offering of immediate care options has been attributed to the training American physicians receive beginning in medical school. Death is the enemy and is to be fought off at all costs. The costs in capital, i.e. Medicare spending, and human suffering terms are not really considered. “But the potential to cause needless pain and suffering while simultaneously breaking the bank is at its greatest as we get closer to the very end of life. The temptation to keep on the fight, to summon the heavy artillery, is enormous when death is the alternative. The truth is that at the very end of life, death is no longer an ‘alternative’ --- a locution that suggests there is another possibility. Death is the only possible outcome. What we can control is not whether or not we die, but the style in which we do it.”22 P 63 And that ‘bank’ that Dr. Gillick refers to is not the patients piggy bank. It is the Medicare tax dollars being collected from the working Americans at the time the patient is using his/her medical benefits. SUPPORT, a widely publicized research study funded by the Robert Wood Johnson Foundation (RWJF) between 1989 and 1994, found that in excess of 80% of hospitalized dying patients in America experienced the three following conditions: * Still died in uncontrolled pain * Were hooked up to machines until just a few hours before they died 22 Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press. Page 33 0f 62
  • 34. * Did not, for the most part, have Advance Health Care Directives such as a living will; even if a patient had an advance directive, it was often not followed23 . Having an Advance Health Care Directive and ensuring that it was followed might have prevented the first two conditions. Advance Health Care Directives or living wills are not meant replace new and helpful components and methods of delivery of health care for the elderly. Medicare is now funding chronic care improvement programs and teaching about disease management so that patients and their caregivers can make changes that may to lead longer and healthier lives lived by the aging population. But these good programs do not change the fact that at some point in time, we are dying and that has become the most expensive time in our lives. 2 Who Argues for and against What Options 2.1 Politics: usual and unusual The following quote, often cited not in it’s correct version, was in a speech made by Richard D. Lamm, former Colorado governor and now director of the Center for Public Policy and Contemporary Issues at the University of Denver, "We've got a duty to die and get out of the way with all of our machines and artificial hearts and everything else like that and let the other society, our kids, build a reasonable life." This speaks directly to the issue that our lives are not permanent here on Earth and that the expense of prolonging and attempting to extend them beyond a time that allows us to actually live them is not in the best interest of our society and it’s members. 2.2 Religious institutions As a part of the opposition against the proposed 2000 Death with Dignity 23 http://www.rwjf.org/pr/topic.jsp?topicid=1194&p=os Page 34 0f 62
  • 35. legislation in the State of Maine, the Christian Civic League added to the fight, in total disagreement with Governor Lamm that, “passage of this legislation might make Maine a state in which our elderly may feel an obligation to die” (Health 2000). And when it comes right down to it, the obligation may not be to die but not to charge the America people a very large amount of money and resources to try to live longer for a short period of time. Not all Americans, of any age, are going to agree with this position regardless of the costs associated with it. A 90 year old woman ‘suffering’ from advanced Alzheimer’s disease was being kept alive because her daughters had religious convictions that supported their belief that suffering was of little consequence compared to the immeasurable value of life itself. So she was treated for pneumonia by oxygen, Tylenol and a morphine drip. From there she was transferred to an acute care hospital where she was hooked up to a respirator. She then had a heart attack and stress ulcer. Add to this the intravenous catheters inserted in her veins, the extensive blood transfusions and the details that all the while the elderly patient herself was attempting, and sometimes able, to remove them. At this point, she hadn’t been able to eat for over a year so just providing nutrition to her was a challenge. If I wanted to punish my parent(s) or spouse, I can’t think of a better system for succeeding in my aims. The National Conference of Catholic Bishops issued a directive on health care by asserting that ‘a person has a moral obligation to use ordinary or proportionate means of preserving life. But even these conservation stalwarts of religious morality explain that “proportionate means are those that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive Page 35 0f 62
  • 36. burden or impose excessive expense on the family or the community.” 24 The woman, whose Alzheimer’s and other illnesses were described above, wasn’t making any such judgments at this point in her life and her daughters, in their expressed love, did not incorporate either ‘reasonable hope’ or ‘excessive burden’ in to their decision making process. I do not care to receive any of the ‘benefits’ that she was being subjected to in my future phases of life. These issues are not new and they are not in anyway unique to the American experience of the 21st century. As the esteemed philosopher Sir Thomas More wrote about in 1515 in his book Utopia, “Let’s face it, you’ll never be able to live a normal ife. You’re a nuisance to other people and a burden to yourself – in fact you’re really leading a sort of posthumous existence. So why go on feeding germs? Since your life’s a misery to you, why hesitate to die? You’re imprisoned in a torture-chamber – why don’t you break out and escape to a better world? Or say the word, and we’ll arrange for your release. It’s only common sense to cut your losses. It’s also an act of piety to take the advice of a priest, because he speaks for God.” It wasn’t about cash then but actual resources in the community. Sir Thomas More even had the audacity to incorporate the Catholic Church’s alleged approval of the decision that a person could/should make to end their life in its final stages. Almost five hundred years ago and the same discussions were going on for the same reasons. Medical treatments have improved in a geometric progression but there still is an end to human life and we are still going to die when we have 24 Ethical and Religious Directives for Catholic Health Care Services, Fourth Edition NCCB/USCC, June 15, 2001, United States Conference of Catholic Bishops, Inc. Page 36 0f 62
  • 37. reached that time. In the Helga Wanglie law case, the court decided the case strictly as a guardianship matter and did not address the appropriateness of treatment issue. Nor was it asked to do so by either party. No new or more cost effective rulings were a result of this women’s long drawn out end-of-life story. Yet, “Perhaps there will be fewer Helga Wanglie if facilities ensure that patients upon admission learn about "advance directives" - as well as about the mess that can occur when they fail to make their wishes clear.”25 2.3 The harm that may be caused by forcing Americans to explore, research, learn about and make informed decisions about their own death Daniel Hillyard summed it up so well when he stated, “we chronicle the growing awareness of the shortcomings of medicalized dying the concomitant perception that there exists a “right way” – meaning a desirable way – to die.”26 Dying is not a task that is high on my list of things I want to do anytime in the near future. Nor do I want my close family members or friends to be a part of this process. But neither of those emotional feelings change the fact that one day, in the far future I hope, the time will come. When I am eighty-three years old, spending $800,000 or more on keeping me alive a few more months does not make a lot of financial sense to me. Name the hospital room for me, send a kid to medical school, pay for research on some non-fossil fuel energy source, do a lot of things that my life stood for but don’t charge the working Americans and their children to 25 Capron, Alexander Morgan. Publication: The Hastings Center Report. September 1 1991 26 http://www.articlearchives.com/law-legal-system/trial-procedure-judges/989493-1.html Page 37 0f 62
  • 38. accomplish this goal of extending my life beyond the time I was meant to die. “Might ever there come a point when hundreds of thousands of dollars spent on life support for one person in an irreversible coma should be redirected to, say, immunizations or prenatal care for scores of others?”27 p. 50 As a part of this thesis process, I, proud owner for many years of an outdated living will, have also completed the attached advance healthcare directives. I didn’t know about them, their purpose or why it was important to our great nation that we fill them out before I researched this Medicare crisis. 7 Advance Health Care Directives as One Component of the Proactive Changes That Must be Made to Medicare/Medicaid service to save some portion of it 2.4 As members, both givers and takers, in a society there are rights and responsibilities within each system Perhaps what this topic is really about is rights and responsibilities. No one wants to loudly proclaim, “take all those dying old people out of the hospital beds and send them home and let them die!” It wouldn’t be popular with the voters, the politicians would have to speak out for the elderly, the church ladies would be forced to spend extra prayer time on all the ill old folks, and the senior citizens themselves would feel fear and not loved. None of this changes the fact that terminally ill and dying elderly Americans were once not terminally ill and dying. We have the responsibility to act in the best interest of our nation and our children when we accept our right to take the vast amount of Medicare dollars from those Americans working to pay our health care bills. 27 Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook for Professionals. Chicago: American Bar Association. Page 38 0f 62
  • 39. 2.5 Unless those members are willing to also assume the responsibilities for themselves they have the ability to bring down an entire society, the people and the structure Most terminally ill and dying elderly people created their own future footprint on planet Earth when they reproduced offspring. They must be willing, when they are still able, to plan for their own future and the future of their offspring. There are monetary efficiencies inherent in this framework for the future and they must be considered by each adult when making their own advance directive decisions. Is it the intent of a working mother named Shellie, aged thirty-nine, that her seven-year old son spend almost three cents of every dollar that he and his wife earn starting in about twenty-six years on her health care and if so, is Shellie willing to put that in writing. Or if Shellie is faced with immanent death as a result of a terminal illness, would she prefer that her son and daughter-in-law save their hard-earned income for the college expenses for their own children or spend it on extending her life. These are not easy questions to face yet face them we must. The costs continue to rise, the percentage of Americans working to pay them continues to decline and we’re all getting older. Page 39 0f 62
  • 40. Conclusion 2.6 Economic issues such as lack of incentives, fairness issue, efficiency of expenditures The use of advance planning and living wills has the ability to greatly alter the way we in America deal with death and dying in our elderly population. Reducing the costs associated with this final stage of our life is just one of the benefits, and one that may allow our existing system to operate without huge infusions of new cash. Without this and other changes, we simply won't have the financial resources in place to support our existing Medicare + Medicaid systems as they incorporate the large numbers of Baby Boomers. While I may choose to limit the number and types of aggressive medical treatments that I receive during my end-of-life care, my spouse may feel differently and request the most aggressive types of care regardless of whether they’ll have a positive impact on the quantity or quality of his life. In my case, there will probably be a positive result on the cost of my end-of-life care to the American workers. In my husband’s case, it could still result in the million dollar, in 2009 dollars, expenditures described in Helga Wanglie’s treatments. In the Pew research survey, fewer than 44% of Americans say they would ask to end care if they had an illness that made them totally dependent on another person for all of their care. Another 38% responded that they would want the most ‘aggressive’ care provided and everything done to save them. The numbers are a close: 42%, please halt treatment. 43%, don’t halt treatment. There’s actually been a small increase reported, since 1991, in the percentage who say they want everything done medically under these Page 40 0f 62
  • 41. scenarios which doesn’t bode at all well for the oncoming Medicare challenges.28 p. 6 The U.S. federal Patient Self Determination Act (PSDA) includes in part (A)(i) “an individual’s rights under State law (whether statutory or as recognized by the courts of the State) to make decisions concerning such medical care, including the right to accept or refuse medical or surgical treatment and right to formulate advance directives (as defined in paragraph (3)), and (ii) the written policies of the provider or organization respecting the implementation of such rights.” The existing problem with this very good statute is that it is presented to adults when admitted to a hospital, skilled nursing facility or hospice program or when under the care of a home health agency. Once again; too little, too late. By this time in an adult’s life-cycle-ending point they may not be able, willing or even conscious to make such types of decisions. The second major problem is that it is completely voluntary so no one is currently required to have made such provisions for themselves should they become faced with the need. My thesis advocates requiring all American’s who accept Medicare benefits to have a legal Advance Health Care Directive in place. The transaction itself must occur by the time they turn sixty-five years of age and become eligible for the program and not when they are elderly, ill, frail, incapacitated in a multitude of ways and reliant on others to make their decisions for them. Using Advance Health Care Directives can prevent a person’s final health care decisions from being made by a court appointed guardian. Instead, they will be based on your values, spiritual beliefs, wishes for a lasting contribution to the future of your 28 Pew Research Center for The People & The Press. (2006). More Americans Discussing – and Planning – End-of-Life Treatment STRONG PUBLIC SUPPORT FOR RIGHT TO DIE. http://www.pewtrusts.org/news_room_detail.aspx?id=23572 Page 41 0f 62
  • 42. society and country. They are not permanent and can be removed completely or changed with just the words being spoken from your mouth. “If near death and struggling to breath, the patient suddenly was to gasp, “Save me! Save me! Don’t let me go!” the directive would have to be disregarded and heroic life-sustaining measure (e.g., a ventilator) started.” P. 629 Due to the lack of a federal Advance Health Care Directive, and relying totally on the fifty state-issued or attorney drafted versions, we are not using the Advance Health Care Directives to full advantage. Yet if we are able to reduce the proportion of the people currently using the thirty to thirty five percent of all Medicare expenditures in that last year of their life by half to just 2.5%, then they will only be spending five times the amount the other 97.5% of the Medicare population claims. The ethics of advance health directives are a whole other paper but a small component that bears referencing here is the question of whether a level of care either so remarkably extraordinary or so patently future as to compromise scarce societal resources, thereby diminishing the just level of care that might be afforded to others.” Scarcity versus abundance, unlimited amounts of capital versus finite amounts of money continue to be the basis of the oncoming crisis. Each of the fifty states has some form of the Advance Health Care Directive. I have included the Illinois version of both the directive and a living will, signed and sealed by me, in this paper. They are legal and binding across state lines but not in other countries. And the directives, if not enforced, don’t provide much remedy to the dying patient. There is some irony in the fact that, to date, Advance Health Care Directives are not viewed as a constitutional issue at the federal level in spite of the small detail that it is 29 Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook for Professionals. Chicago: American Bar Association. Page 42 0f 62
  • 43. a federal program, Medicare, that pays for all the health care services provided to the dying people. The Pew Research Center conducted a survey in 2005 among 1,500 adults, and found that while overall attitudes among Americans are largely stable, people are more actively thinking about and planning for their own medical treatment in the event of a terminal illness or incapacitating medical condition. The aging of the population could be the cause of this increased planning process. Public awareness of living wills, already widespread in 1990, is now virtually universal. The good news is the number saying they have a living will has more than doubled – from just 12% in 1990 to 29% today.30 p. 1 The bad news is that means approximately 71% of Americans do not have living wills today. The process of drafting an Advance Health Care Directive, a living will or any other legal instrument is not intended to be fun. It probably will not be anticipated with glee by many Americans faced with doing it, for mandatory or elective reasons. Some people may experience the pain that reliving past experiences with deceased relatives may bring up for them. Others may fear illness and death and this process forces them to face this fear head on and still finish their legal document. Still others hold the process of death itself to be a part of their religious faith and do not believe it either their responsibility or option to address. There are those of us who sometimes believe that if we ignore something, it will not come to pass, but death is yet another one of those things that ignoring doesn’t seem to have any affect on. Whether we want to do this or not, it 30 Pew Research Center for The People & The Press. (2006). More Americans Discussing – and Planning – End-of-Life Treatment STRONG PUBLIC SUPPORT FOR RIGHT TO DIE. http://www.pewtrusts.org/news_room_detail.aspx?id=23572 Page 43 0f 62
  • 44. doesn’t change the economic crisis rapidly approaching us. Another important, non-economic result of this change may be to teach Americans that dying is a natural part of our life cycle and that it may not always be bad. Death with comfort, palliative care and dignity may be the way some of us choose to end our lives, not as recipients of lengthy, painful, frightening and non-curative medical care at unsustainable expense to our national healthcare system for the elderly. Page 44 0f 62
  • 45. Bibliography Aaron, H., Lambrew, J. (2008). Reforming Medicare: options, tradeoffs, opportunities. Washington, D.C.: Brookings Institution Press. Aaron, H., Schwartz, W., Cox, M. (2005). Can We Say No? The Challenge of Rationing Health Care. Washington, D.C.: Brookings Institution Press. Battin, M., Francis, L., Landesman, B., (2007). Death, Dying and the Ending of Life, Volume II. Hampshire, England: Ashgate Publishing Company. Barnes, J. (2008). Nothing To Be Frightened Of. New York: Alfred A. Knopf. Sandra Beckwith. Journal of Palliative Medicine. Winter 1999, 2(4): 377-381. doi:10.1089/jpm.1999.2.377. Blank, R., Merrick, J. (2005), End-of-life decision making: a cross-national study. Massachusets: MIT Press. Drane, J., (2003), More Humane Medicine: A Liberal Catholic Bioethics. Pennsylvania: Edinboro University Press. Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press. Gillick, M. (1994). Choosing Medical Care in Old Age: What Kind, How Much, When to Stop. Cambridge: Harvard University Press. Hillyard, D. (2001). Dying right: the death with dignity movement. New York: Routledge Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook for Professionals. Chicago: American Bar Association. 2008 ANNUAL REPORT OF THE BOARDS OF TRUSTEES OF THE FEDERAL HOSPITAL INSURANCE AND FEDERAL SUPPLEMENTARY MEDICAL INSURANCE TRUST FUNDS www.cms.hhs.gov/reportstrustfunds/downloads/tr2008.pdf STATEMENT OF ILLINOIS LAW ON ADVANCE HEALTH CARE DIRECTIVES AND DNR ORDERS http://www.idph.state.il.us/public/books/advin.htm Compassion & Choices Launches Nation's Only Patient-Centered Care Web Site Main Category: Palliative Care / Hospice Care The Medicare Modernization Act of 2003 Centers for Medicare and Medicaid Services funding demonstration programs for chronically ill patients. Disease management Page 45 0f 62
  • 46. programs for Medicare beneficiaries with congestive heart failure, diabetes and chronic obstructive pulmonary disease. LONG-TERM FISCAL OUTLOOK Long-Term Federal Fiscal Challenge Driven Primarily by Health Care Statement of Gene L. Dodaro, Acting Comptroller General of the United States, Testimony Before the Committee on Finance, U.S. Senate United States Government Accountability Office, June 17, 2008 The Patient Self Determination Act 42 USCA Section 1395cc Pew Research Center for The People & The Press. (2006). More Americans Discussing – and Planning – End-of-Life Treatment STRONG PUBLIC SUPPORT FOR RIGHT TO DIE. http://www.pewtrusts.org/news_room_detail.aspx?id=23572 Page 46 0f 62
  • 47. STATEMENT OF ILLINOIS LAW ON ADVANCE HEALTH CARE DIRECTIVES AND DNR ORDERS You have the right to make decisions about the health care you get now and in the future. An advance directive is a written statement you prepare about how you want your medical decisions to be made in the future, if you are no longer able to make them for yourself. A do not resuscitate order (DNR order) is a medical treatment order that says cardiopulmonary resuscitation (CPR) will not be used if your heart and/or breathing stops. Federal law requires that you be told of your right to make an advance directive when you are admitted to a health-care facility. Illinois law allows for the following three types of advance directives: (1) health care power of attorney; (2) living will; and (3) mental health treatment preference declaration. In addition, you can ask your physician to work with you to prepare a DNR order. You may choose to discuss with your health-care professional and/or attorney these different types of Advance Health Care Directives as well as a DNR order. After reviewing information regarding Advance Health Care Directives and a DNR order, you may decide to make more than one. For example, you could make a health care power of attorney and a living will. If you have one or more Advance Health Care Directives and/or a DNR order, tell your health-care professional and provide them with a copy. You may also want to provide a copy to family members, and you should provide a copy to those you appoint to make these decisions for you. State law provides copies of sample Advance Health Care Directives forms. In addition, this webpage provides a copy of these forms and a copy of the Illinois Department of Public Health (IDPH) Uniform Do Not Resuscitate (DNR) Advance Directive. Health Care Power of Attorney The health care power of attorney lets you choose someone to make health-care decisions for you in the future, if you are no longer able to make these decisions for yourself. You are called the "principal" in the power of attorney form and the person you choose to make decisions is called your "agent." Your agent would make health-care decisions for you if you were no longer able to makes these decisions for yourself. So long as you are able to make these decisions, you will have the power to do so. You may use a standard health care power of attorney form or write your own. You may give your agent specific directions about the health care you do or do not want. The agent you choose cannot be your health-care professional or other health-care provider. You should have someone who is not your agent witness your signing of the power of attorney. The power of your agent to make health-care decisions on your behalf is broad. Your Page 47 0f 62
  • 48. agent would be required to follow any specific instructions you give regarding care you want provided or withheld. For example, you can say whether you want all life-sustaining treatments provided in all events; whether and when you want life-sustaining treatment ended; instructions regarding refusal of certain types of treatments on religious or other personal grounds; and instructions regarding anatomical gifts and disposal of remains. Unless you include time limits, the health care power of attorney will continue in effect from the time it is signed until your death. You can cancel your power of attorney at any time, either by telling someone or by canceling it in writing. You can name a backup agent to act if the first one cannot or will not take action. If you want to change your power of attorney, you must do so in writing. Living Will A living will tells your health-care professional whether you want death-delaying procedures used if you have a terminal condition and are unable to state your wishes. A living will, unlike a health care power of attorney, only applies if you have a terminal condition. A terminal condition means an incurable and irreversible condition such that death is imminent and the application of any death delaying procedures serves only to prolong the dying process. Even if you sign a living will, food and water cannot be withdrawn if it would be the only cause of death. Also, if you are pregnant and your health-care professional thinks you could have a live birth, your living will cannot go into effect. You can use a standard living will form or write your own. You may write specific directions about the death-delaying procedures you do or do not want. Two people must witness your signing of the living will. Your health-care professional cannot be a witness. It is your responsibility to tell your health-care professional if you have a living will if you are able to do so. You can cancel your living will at any time, either by telling someone or by canceling it in writing. If you have both a health care power of attorney and a living will, the agent you name in your power of attorney will make your health-care decisions unless he or she is unavailable. Mental Health Treatment Preference Declaration A mental health treatment preference declaration lets you say if you want to receive electroconvulsive treatment (ECT) or psychotropic medicine when you have a mental illness and are unable to make these decisions for yourself. It also allows you to say whether you wish to be admitted to a mental health facility for up to 17 days of treatment. You can write your wishes and/or choose someone to make your mental health decisions Page 48 0f 62
  • 49. for you. In the declaration, you are called the "principal" and the person you choose is called an "attorney-in-fact." Neither your health-care professional nor any employee of a health-care facility in which you reside may be your attorney-in-fact. Your attorney-in- fact must accept the appointment in writing before he or she can start making decisions regarding your mental health treatment. The attorney-in-fact must make decisions consistent with any desires you express in your declaration unless a court orders differently or an emergency threatens your life or health. Your mental health treatment preference declaration expires three years from the date you sign it. Two people must witness you signing the declaration. The following people may not witness your signing of the declaration: your health-care professional; an employee of a health-care facility in which you reside; or a family member related by blood, marriage or adoption. You may cancel your declaration in writing prior to its expiration as long as you are not receiving mental health treatment at the time of cancellation. If you are receiving mental health treatment, your declaration will not expire and you may not cancel it until the treatment is successfully completed. Do-Not-Resuscitate Order You may also ask your health-care professional about a do-not-resuscitate order (DNR order). A DNR order is a medical treatment order stating that cardiopulmonary resuscitation (CPR) will not be attempted if your heart and/or breathing stops. The law authorizing the development of the form specifies that an individual (or his or her authorized legal representative) may execute the IDPH Uniform DNR Advance Directive directing that resuscitation efforts shall not be attempted. Therefore, a DNR order completed on the IDPH Uniform DNR Advance Directive contains an advance directive made by an individual (or legal representative), and also contains a physician’s order that requires a physician’s signature. Before a DNR order may be entered into your medical record, either you or another person (your legal guardian, health care power of attorney or surrogate decision maker) must consent to the DNR order. This consent must be witnessed by two people who are 18 years or older. If a DNR order is entered into your medical record, appropriate medical treatment other than CPR will be given to you. This webpage provides a copy of the Illinois Department of Public Health (IDPH) Uniform Do Not Resuscitate (DNR) Advance Directive that may be used by you and your physician. This webpage also provides a link to guidance for individuals, health-care professionals and health-care providers concerning the IDPH Uniform DNR Advance Directive. What happens if you don't have an advance directive? Under Illinois law, a health care "surrogate" may be chosen for you if you cannot make health-care decisions for yourself and do not have an advance directive. A health care surrogate will be one of the following persons (in order of priority): guardian of the Page 49 0f 62
  • 50. person, spouse, any adult child(ren), either parent, any adult brother or sister, any adult grandchild(ren), a close friend, or guardian of the estate. The surrogate can make all health-care decisions for you, with certain exceptions. A health care surrogate cannot tell your health-care professional to withdraw or withhold life-sustaining treatment unless you have a "qualifying condition," which is a terminal condition, permanent unconsciousness, or an incurable or irreversible condition. A "terminal condition" is an incurable or irreversible injury for which there is no reasonable prospect of cure or recovery, death is imminent and life-sustaining treatment will only prolong the dying process. "Permanent unconsciousness" means a condition that, to a high degree of medical certainty, will last permanently, without improvement; there is no thought, purposeful social interaction or sensory awareness present; and providing life- sustaining treatment will only have minimal medical benefit. An "incurable or irreversible condition" means an illness or injury for which there is no reasonable prospect for cure or recovery, that ultimately will cause the patient's death, that imposes severe pain or an inhumane burden on the patient, and for which life-sustaining treatment will have minimal medical benefit. Two doctors must certify that you cannot make decisions and have a qualifying condition in order to withdraw or withhold life-sustaining treatment. If your health care surrogate decision maker decides to withdraw or withhold life-sustaining treatment, this decision must be witnessed by a person who is 18 years or older. A health care surrogate may consent to a DNR order, however, this consent must be witnessed by two individuals 18 years or older. A health care surrogate, other than a court-appointed guardian, cannot consent to certain mental health treatments, including treatment by electroconvulsive therapy (ECT), psychotropic medication or admission to a mental health facility. A health care surrogate can petition a court to allow these mental health services. Final Notes You should talk with your family, your health-care professional, your attorney, and any agent or attorney-in-fact that you appoint about your decision to make one or more Advance Health Care Directives or a DNR order. If they know what health care you want, they will find it easier to follow your wishes. If you cancel or change an advance directive or a DNR order in the future, remember to tell these same people about the change or cancellation. No health-care facility, health-care professional or insurer can make you execute an advance directive or DNR Order as a condition of providing treatment or insurance. It is entirely your decision. If a health-care facility, health-care professional or insurer objects to following your advance directive or DNR order then they must tell you or the individual responsible for making your health-care decisions. They must continue to provide care until you or your decision maker can transfer you to another health-care provider who will follow your advance directive or DNR order. Page 50 0f 62
  • 51. Last updated June 27, 2006 Page 51 0f 62
  • 52. Living Will� DECLARATION This declaration is made this __________ day of_____________________________(month, year). I, ___________________________________________________, being of sound mind, willfully and voluntarily make known my desires that my moment of death shall not be artificially postponed. If at any time I should have an incurable and irreversible injury, disease, or illness judged to be a terminal condition by my attending physician who has personally examined me and has determined that my death is imminent except for death delaying procedures, I direct that such procedures which would only prolong the dying process be withheld or withdrawn, and that I be permitted to die naturally with only the administration of medication, sustenance, or the performance of any medical procedure deemed necessary by my attending physician to provide me with comfort care. In the absence of my ability to give directions regarding the use of such death delaying procedures, it is my intention that this declaration shall be honored by my family and physician as the final expression of my legal right to refuse medical or surgical treatment and accept the consequences from such refusal. Signed________________________________________________________________________ City, County and State of Residence ___________________________________________________________________ The declarant is personally known to me and I believe him or her to be of sound mind. I saw the declarant sign the declaration in my presence (or the declarant acknowledged in my presence that he or she had signed the declaration) and I signed the declaration as a witness in the presence of the declarant. I did not sign the declarant’s signature above for or at the direction of the declarant. At the date of this instrument, I am not entitled to any portion of the estate of the declarant according to the laws of intestate succession or, to the best of my knowledge and belief, under any will of declarant or other instrument taking effect at declarant’s death, or directly financially responsible for declarant’s medical care. Witness________________________________________________________________________ Witness________________________________________________________________________ Page 52 0f 62
  • 53. Power of Attorney for Health Care� Illinois Statutory Short Form (NOTICE: the purpose of this power of attorney is to give the person you designate (your “agent”) broad powers to make health care decisions for you, including power to require, consent to or withdraw any type of personal care or medical treatment for any physical or mental condition and to admit you to or discharge you from any hospital, home or other institution. This form does not impose a duty on your agent to exercise granted powers; but when powers are exercised, your agent will have to use due care to act for your benefit and in accordance with this form and keep a record of receipts, disbursements and significant actions taken as agent. A court can take away powers of your agent if it finds the agent is not acting properly. You may name successor agents under this form but not co-agents, and no health care provider may be named. Unless you expressly limit the uration of this power in the manner provided below, until you revoke this power or a court acting on your behalf terminates it, your agent may exercise the powers given here throughout your lifetime, even after you become disabled. The powers you give your agent, your right to revoke those powers and the penalties for violating the law are explained more fully in sections 4-5, 4-6, 4-9 and 4-10(b) of the Illinois “Powers of Attorney for Health Care Law” of which this form is a part. That law expressly permits the use of any different form of power of attorney you may desire. If there is anything about this form that you do not understand, you should ask a lawyer to explain it to you.) POWER OF ATTORNEY made this __________ day of___________________________(month, year). 1. I,__________________________________________________________________________ (insert name and address of principal) hereby appoint:_________________________________________________________________ (insert name and address of agent) as my attorney-in-fact (my “agent”) to act for me and in my name (in any way I could act in person) to make any and all decisions for me concerning my personal care, medical treatment, hospitalization and health care and to require, withhold or withdraw any type of medical treatment or procedure, even though my death may ensue. My agent shall have the same access to my medical records that I have, including the right to disclose the contents to others. My agent shall also have full power to authorize an autopsy and direct the disposition of my remains. Effective upon my death, my agent has the full power to make an anatomical gift of the following (initial one): Any organ: Specific organs: (The above grant of power is intended to be as broad as possible so that your agent will have authority to make any decision you could make to obtain or terminate any type of health care, Page 53 0f 62
  • 54. including withdrawal of food and water and other life-sustaining measures, if your agent believes such action would be consistent with your intent and desires. If you wish to limit the scope of your agent’s powers or prescribe special rules or limit the power to make an anatomical gift, authorize autopsy or dispose of remains, you may do so in the following paragraphs.) 2. The powers granted above shall not include the following powers or shall be subject to the following rules or limitations (here you may include any specific limitations you deem appropriate, such as: your own definition of when life-sustaining measures should be withheld; a direction to continue food and fluids or life-sustaining treatment in all events; or instructions to refuse any Illinois Statutory Short Form Power of Attorney for Health Care Page 2 specific types of treatment that are inconsistent with your religious beliefs or unacceptable to you for any other reason, such as blood transfusion, electro-convulsive therapy, amputation, psychosurgery, voluntary admission to a mental institution, etc.): ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ (The subject of life-sustaining treatment is of particular importance. For your convenience in dealing with that subject, some general statements concerning the withholding or removal of life-sustaining treatment are set forth below. If you agree with one of these statements, you may initial that statement; but do not initial more than one): _____ I do not want my life to be prolonged nor do I want life-sustaining treatment to be provided or continued if my agent believes the burdens of the treatment outweigh the expected benefits. I want my agent to consider the relief of suffering, the expense involved and the quality as well as the possible extension of my life in making decisions concerning life-sustaining treatment. _____ I want my life to be prolonged and I want life-sustaining treatment to be provided or continued unless I am in a coma which my attending physician believes to be irreversible, in accordance with reasonable medical standards at the time of reference. If and when I have suffered irreversible coma, _____ I want life-sustaining treatment to be withheld or discontinued. I want my life to be prolonged to the greatest extent possible without regard to my condition, the chances I have for recovery or the cost of the procedures. (This power of attorney may be amended or revoked by you in the manner provided in section 4-6 of the Illinois “powers of attorney for health care law” (see the back of this form). Absent amendment or revocation, the authority granted in this power of attorney will become effective at the time this power is signed and will continue until your death, and beyond if anatomical gift, autopsy or disposition of remains is authorized, unless a limitation on the beginning date or duration is made by initialing and completing either or both of the following:) Page 54 0f 62 Initialed Initialed Initialed
  • 55. 3.( ) This power of attorney shall become effective on____________________________________ (insert a future date or event during your lifetime, such as court determination of your disability, when you want this power to first take effect) 4.( ) This power of attorney shall terminate on__________________________________________ ______________________________________________________________________________ (insert a future date or event, such as court determination of your disability, when you want this power to terminate prior to your death) (If you wish to name successor agents, insert the names and addresses of such successors in the following paragraph.) 5. If any agent named by me shall die, become incompetent, resign, refuse to accept the office of agent or be unavailable, I name the following (each to act alone and successively, in the order named) as successors to such agent: ______________________________________________________________________________ ______________________________________________________________________________ (continued) Illinois Statutory Short Form Power of Attorney for Health Care Page 3 For purposes of this paragraph 5, a person shall be considered to be incompetent if and while the person is a minor or an adjudicated incompetent or disabled person or the person is unable to give prompt and intelligent consideration to health care matters, as certified by a licensed physician. (If you wish to name your agent as guardian of your person, in the event a court decides that one should be appointed, you may, but are not required to, do so by retaining the following paragraph. The court will appoint your agent if the court finds that such appointment will serve your best interests and welfare. Strike out paragraph 6 if you do not want your agent to act as guardian.) 6. If a guardian of my person is to be appointed, I nominate the agent acting under this power of attorney as such guardian, to serve without bond or security. 7. I am fully informed as to all the contents of this form and understand the full import of this grant of powers to my agent. Signed________________________________________________________________________ (principal) The principal has had an opportunity to read the above form and has signed the form or acknowledged his or her signature or mark on the form in my presence. ____________________________Residing at_________________________________________ (witness) Page 55 0f 62
  • 56. (You may, but are not required to, request your agent and successor agents to provide specimen signatures below. If you include specimen signatures in this power of attorney, you must complete the certification opposite the signatures of the agents.) Specimen signatures of agent (and successors) I certify that the signatures of my agent (and successors) are correct. ________________________________ ________________________________________ (agent) (principal) ________________________________ ________________________________________ (successor agent) (principal) ________________________________ ________________________________________ (successor agent) (principal) Page 56 0f 62