4. Our Own Ending
What would a good death mean for U?
That’s the BIG question… because we all have our own individual ideas of what we
would like our ending to be like.
Whether it be Dr. Zeke Emanuel who voiced his preference and plans to stop
getting active medical care by age 75 or Pope Benedict who chose to accept the
medical aid of a pace maker… we should each get to make our own individual choices
on how we choose to live, what care we want, and ultimately how we choose to die.
As the authors of our own lives don’t we want the opportunity, when possible, to
have a say in our own final chapters and ending?
photo: Jake Chessum & AFP
5. On November 1, 2014 Brittany Maynard died peacefully
at home surrounded by her loved ones. Her death
caught headlines because this recently married young
woman was forced to uproot her husband and her
parents’ lives in the midst of her devastating news of a
rare terminal brain cancer and move to Oregon in order
to be able to carry out her last wishes of dying with
dignity on her own terms.
Brittany went out of her way to make the distinction between exercising her
personal freedom to choose the time and manor she died and being suicidal. She was
a lover of life and would have done anything to continue to live a healthy life but she
was terminal and she wanted to end her life on her own terms and not endure the
suffering that had already brought her great pain and taken control over her body.
No matter how we feel about her decision, we have to ask ourselves:
Would we want others making the decision for us?
Few would. We want to be free to follow our own moral, religious, and personal
beliefs and preferences.
Where’s The Dignity?
6. Recently in a New York Times article, Complexities of
Choosing an End Game for Dementia, Jerome Medalie
an 88-year-old former lawyer stated, in addition to
expressing basic health care directives, he wanted it
“If I’m not me, I don’t want to be.”
He was referring to the instructions he spelled out for his wife to ensure that he is
not kept alive through nutrition and hydration if he develops dementia that robs him
of knowing who his loved ones are or not being able to articulate coherent thoughts.
VSED, or voluntary stopping eating and drinking, is not his preferred choice- he’d
rather have the option that Brittany was afforded but he wouldn’t qualify.
Currently in the states that allow death with dignity the patient needs to be of
sound mind at the time they decide to utilize the medications involved.
But what if we want to outline our wishes for when we are not of sound mind?
Should we be able to make plans for our future selves? And if we do, sound mind or
not, should starvation at the hands of our care-takers or moving be our only options?
If Not Me…
photo: Kayana Szymczak for NYT
7. Boomers will soon be approaching their twilight years and
will doubtfully just let themselves be “put in a home”
and fade away quietly.
One difference between them and their parents
is that not only do we live longer today we also die longer.
And forget the fact that Medicare spends 28% of
its budget caring for people in their last year of life,
$50+ billion of that in the last two months alone,
because when the Boomer boom happens we’ll be
forced to do deal with a healthcare crisis either way.
Let’s instead focus on the fact that they’ll want their own choices,
their own generation’s solutions and revolution.
Alzheimer's itself currently affects 5 million Americans and is expected to more
than triple by 2050. The Boomers have already seen the toll this disease is taking on
their parents and some friends and many have clearly stated they don’t want to live
So we need to have the conversation now. We need to decide as a nation if we
will be making our own self-determined end-of-life plans or are we going to let
doctors, hospitals, politicians, religious leaders and chance make it for us?
The BIG Boom
8. We’re Mortal!
Atul Gawande is a surgeon, Harvard professor, well respected
health care advocate, and the author of the best seller
Being Mortal. In his book he explores how little doctors are
taught about end-of-life care and how as a society we’ve
created a multi-trillion-dollar institutional structure that does little to allow people to
live out their last days, let alone end their lives, on their own terms.
It’s not doctors and medical professionals faults though, it’s ours. We give over
our power to doctors and hospitals who are taught to keep people alive at all costs
(literally and figuratively) and that is what they are brilliant at doing.
He brings up the uncomfortable question of whether our well being or the length
of our life is more important to us at the end? And what are we willing to trade for it?
Longer life and more medical care, forget the cost, often doesn’t contribute to our
well being. And relying on medical professionals to direct our care is rarely if ever
going to mean doing less.
He has expressed his views that a good death shouldn’t be our goal, a good life
until the end should. But can’t avoiding a painful suffering end not be part of the goal
“I learned about a lot of things in medical school,
but mortality wasn’t one of them.”
9. Against Our Will
Against their will!
Now sure it’s a political and social hotbed which few want to venture into
but that is until it is their family member involved. The majority of doctors, including
The American Medical Association, are against “physician-assisted-suicide” as a legal
matter but privately do not want to die in their own hospitals and want to be able to
direct their own endings.
It makes sense that they feel this way. They take an oath to do no harm and they
are trained to keep folks alive; yet, they also see how horrible the suffering can be
when under the current hospital and health care institutions’ rules.
Even when receiving the compassionate care of a good hospice, patients are not
allowed to die when they feel it is their time. Only, hopefully, manage their pain. This
is currently still the best option for most but not completely self-directed because of
imposed laws and taboos.
Even if we had endless resources, which we
surely don’t, to keep every person alive as long
as medically possible… should we? Today we
are letting some non-terminal patients who
are begging for medical care die, while at the
same exact time keeping terminal people from
dying against their will.
10. All Options Open
death date but instead died a “gentle” death receiving comfort care.
The quandary: many well meaning doctors (including Dr. Gawande and Emanuel)
do not want to see so called “doctor-assisted-suicide” legalized but they also all agree
our system is failing the terminally ill and dying.
And the reason many of these doctors oppose death with dignity laws is they are
concerned that there will be less reform and effort put into middle stage options like
palliative and hospice care and that terminal patients will be lead to believe if they are
not going to get further medical care their only option would be to suffer and die.
This is a valid concern and why we need to utilize doctors for medical care while
also supporting new and innovative advances in offerings along the continuum of care
for the terminally ill.
Dying patients are not a doctor’s failure; not being honest with them about their
circumstances and prognosis, not providing them with clear information on the
available options, and not ensuring their partner professions are championed is.
Dr. Ira Byock is a palliative care physician and author
Dying Well and The Best Care Possible and strongly
opposed Brittany Maynard’s plans. He has worked for
most of his career trying to champion better end-of-life
care and wished she would have not picked a
11. If we are all going to die, the conversation is who do we want making the final
decisions for us? Doctors, hospitals, religious institutions? Or U?
So if only a few states have death with dignity laws and folks are not allowed to
utilize the option if they are not of sound mind at the time- what can we do to ensure
our final wishes are followed, especially if we are struck with a form of dementia?
Beyond a living will or medical directive we need to create U Wills:
What will U want?
Who will U trust to carry out your wishes?
We need to state clearly what medical care we want, who we want making
decisions for us, and, if like Jerome we become affected by dementia or some other
condition that would be personally unacceptable to us, what we want done.
There are people who consider preemptive suicide dying desperate and alone
because they know their conditions are going to bring great suffering into their lives
and they don’t want to involve their loved ones. Let’s let people state what they want
early enough in their lives that their wishes are clearly understood and honored.
If doctors don’t want to be involved, let’s make this a pharmaceutical issue and all
the doctors need to do is sign off that we have a terminal condition. Or at least let’s
de-criminalize when loved ones are present when someone clearly chooses to take
their lives by whatever means.
12. Years ago some pithy politicians came up with and
popularized the catchy yet misleading term
Death Panels. It stuck and stopped its intended
purpose: to allow doctors to be reimbursed for
in-office conversations about their patient’s
end-of-life wishes. Some doctors were even dissuaded from then having these
conversations because it became such a touchy topic.
Let’s put aside insurance companies’, government, and outside interests and put
together our own panels. If we as a society are concerned that giving one person in
our lives the Power of Attorney over our health and death care decisions lets allow
people to name any structure they would like to ensure they feel comfortable caring
out their wishes. Power Panel instead of a simple Power of Attorney.
Who would U like to decide? Your family members, lawyer, doctors all together?
Great! U outline the circumstances of agreement desired.
Or how about a standard Power Panel that consists of two independent doctors
who agree someone is terminal, a clerk or lawyer that states their legal affairs and
paperwork are in order, two witnesses who state their wishes were declared while
competent, and a chosen proxy who all sign off? Is that enough safeguards in place?
13. The argument for allowing people
aid in dying raises two main issues:
-People are rightly concerned that our
elderly and ill might be guilted into ending the
burden of their care and costs to their families.
-The other is that government or insurers will lean towards
denying care to those that might want life-prolonging measures.
Of course our first concern should be to protect the frail among
us and the point of death with dignity is not to push others into hastening
their death for convenience or financial reasons- there is no dignity or care in
So let’s make the default: FULL CARE.
Besides doctors have no incentive to encourage patients to stop care, quite the
opposite, but if that is a concern lets allow a non-partisan, non-profit entity to come
up with their own paperwork or system for medication disbursement.
Along with encouraging people to make declarations earlier in their lives when
they are healthy and of sound mind, we should simplify paperwork that loved ones
can fill out together. And checking in to inquire about folks preferences should be
common place, consistent, and considered part of a wellness plan so when something
serious comes up no one feels panicked about having the conversation under duress.
14. The beauty of people deciding for themselves is that there will be more
resources, less rationing, better care, and more options for the people who will want
If someone’s preference is to stay on dialysis or have heart surgery at 85 then
let’s work to ensure them the best care possible. If people want to be at home with
their loved ones, or at a caring hospice center, lets make those choices happen and
invest in making them the best experience possible.
Keeping people alive but in pain and suffering is cruel. Keeping people
uninformed of their real chances of well being by suggesting we’re providing medical
care is too.
We can’t say we’re for freedom and not allow citizens the most personal of
choices; and we can’t proclaim the sanctity of a life if we don’t also at same time make
end-of-life care improved for those who want to utilize the best of that as well.
Each individual having the freedom to make their own decision is really the
More For All
The more people who get to make their own life and
death decisions leads to more options and resources
for all of society!
15. Finally… it might be base, but we need to ask ourselves what kind of society do we
want to live in? One where we dictate what we force folks to endure or forsake or one
where we let each citizen decide for themselves and we support their choices?
The humane thing to do would be provide whatever they need to live out their
final days in comfort and well being and allow them to make whatever end-of-life
decisions ring true to their values.
A Humane Society
If someone wants to end their life today
they surely could find an available means but
why would we want them to be hurried and
hiding and without their loved ones around?
Or… put any who helped or stood by them in
jeopardy of serious life-altering legal
consequences. Very risky.
We don’t let our beloved pets suffer;
should we really force our human loved ones
to endure days, weeks, months, sometimes
years of pain and suffering either?
16. On a personal note: My Mother named me well…
I am a JOYfully optimistic person by nature and so
people sometimes wonder why I wrote my first book
My Last Wishes… A Journal Of Life, Love, Laughs &
A Few Final Notes and why I feel so passionate about
Putting out into the conversation about end-of-life planning.
Isn’t death a depressing subject?
No. There is no more important topic then the fact we die because it gives our
lives the urgency and preciousness. I’ve lost people I have loved dearly and seeing
them suffer and having not had the end that they wanted is what’s really tragic.
When we keep death on the table we see we have no time to waste with petty
grudges, lingering arguments, or putting off what’s important to us. And more urgency
in cherishing our loved ones and achieving our dreams. When we embrace the
conversation and planning for ourselves, and then our loved ones, we can have some
of the most profound and intimate conversations of our lives.
Is death depressing? Not when we lived a life of accomplishment, service, love,
and gratitude. Because we all know someday our story will lead to death, but knowing
that can sweeten the middle and give us some power to create, as best we can,
a good ending.
Me: A Lover of Life
17. Do U support Uthanasia? YAY! Please capture your thoughts and share them in
conversations with your loved ones, then your healthcare team, then your elected
representatives so we can transform end-of-life care and death with dignity.
Do U hate the idea of Uthanasia and have strong opinions on how U want
this topic handled? YAY! Please capture everything that is wrong with it,
how U would want things done on your behalf, and how our system is failing
our elderly and ill. And then please tell everyone U know what U would do
differently and what U want done when your final chapter and end comes.
See what I did there?! ;)
My goal is to get people talking and deciding for themselves and then hopefully
advocate for everyones’ freedom to have their own choices respected.
That’s what I’m here for… and U?
What’s Next For ?
18. If U care about your loved ones, please have the conversation; if U care about your
community, please volunteer and make a difference locally; if U care about the
country, please help come together to improve the current failing system for us all.
When we each make our own decisions there is no right of wrong, or left vs.
right, its all about what works for U.
And if U have any ideas please contribute them because I believe we all want to
have the best medical, palliative, assisted living, hospice, and end-of-life care worthy
of our great country and its citizens.
I want this for me, the ones I love, and for U.
If U are a publisher, organization, or institution interested in working with me on U.
What Can Do:
19. I wish U an amazing life…
and when it’s your end
a very peaceful and