Graduating FM residentMember of SJHMC Ethics and Board Quality at Pt Safety CommitteesMember of ArMA Board of Directors2012 Fellow at the Institute for Palliative Medicine @ SDH[Objectives…]
Before we dive into the details of end-of-life, let’s spend a moment trying to understand the goals of our patients and their families and how they interact without our goals…Image credit: http://blogs.spjnetwork.org/freelance/wp-content/uploads/2011/10/goals.jpg
How do our patients measure satisfaction with EOL care… ?
AHRQ evidence report.Definition of “quality” at EOL:Consistent & reliable medication informationExpert symptom managementAvoiding inappropriate prolongation of dying processRelieving burden of loved onesBeing prepared for death (Dunn & Letrivis, 2011)We must always bear in mind that these goals & beliefs are moving targets over time…Image credit: http://theworkingcaregiver.files.wordpress.com/2010/11/balance.jpg
There are also areas where providers and patients may have different perspectives…
Points of departures between HC providers and patients.As an exercise in the unexpected, I thought that we would ask all of you the same question…[POLL]
JAMA: Cross-sectional, stratified, random national survey done March-Aug 1999 of seriously ill pts, recently bereaved family, physicians and other HC providers. Likert scale of 44 attributes.Attributes ranked by more than 70% of patients but not physicians.“When forced to choose between attributes (Table 5), patients ranked pain control higher than mental awareness; however, the mean rank difference was only 1.51. In contrast, the average difference between the same items among physicians was 3.76, suggesting physicians may be more willing than patients to sacrifice lucidity for analgesia.”Image credit: http://www.islandcrisis.net/wp-content/uploads/2011/05/difference.jpg
Order of patient’s rank.Note: The vast majority of these 9 highest-ranked attributes cannot be directly impacted during the course of medical treatment. The only thing that we as PCPs have to offer these patients is the time to make these things happen.[CLICK] We can see here that having finances in order is very important to patients…
Another study indicated that 63% of terminally ill patients wished to discuss cost of care with their physicians. (Donley & Dannon, 2011). Patients want to know this information, not only because the answer impacts their adherence, but it also impacts directly the order of their finances (which, as we saw above, was ranked 6/44 in their EOL wish list). So we, as providers, must ask ourselves whether we are willing to take on this fiduciary responsibility…[POLL]
Rosow’s decision matrix at the top of the chart.Let’s start with the requisite stats…
By 2050 there will be 72.2 million >65yo with 240% in those >85yo.2009: average cancer patient cost = 300K/YOL gained.Image credit: http://taxvox.taxpolicycenter.org/2009/09/29/why-are-republicans-opposing-medicare-cost-controls/
Technology-driven HC cost escalation is estimated to make up 50% of cost trends. (Callahan 2011.)
Essentially 40% of the years past 65 are marred by disability.75% of those in the US live past 65yo and 83% die with Medicare.…and if we look at what makes it more likely that our patients will have increased costs…Image credit: http://www.newyorker.com/images/2010/08/02/p465/100802_r19854_p465.jpg
In a UK Palliative Medicine Unit.Each of these patient costs directly impacts those of the hospital…Image credit: http://www.belfasttelegraph.co.uk/multimedia/dynamic/00611/UK_News_6-1_jpg_611547t.jpg
Based on 2007 data.Of 2,423,995 US deaths 765,651 in hospital. 31% of elderly deaths. 34% of non-elderly deaths. 74% of infant deaths. EOL accounts for 5 of all inpatient costs in 2007 across all payors but 7% of all Medicare costs with an Avg cost/stay ending in death=$23,017 (2.7x more than stay ending in d/c).Hospice care decreases average Medicare cost by $2300/decedent with maximum monies saved with a 7 week stay (average stay less than 7 days).
Sepsis: 15% of diagnosesResp failure: 8.7% of diagnosesMech Vent: 25% death rate (25% proceeded by)Non cardiac vasccath: 7% death rate (5% proceeded by)Cardioversion: 21% death rateTrach: 17% death rateImage credit: http://www.metrolic.com/wp-content/uploads/2010/07/The-Only-Death2.jpg
Opportunity CostPatient Lost ProductivityCaregiver CostsDirect costLost productivity[Transition to personal finances..]
Cancer deaths are projected to increase 45% between 2010 and 2015.Bevacizumab for NSCLC average increase life expectancy 2 weeks $1.2million/QALYErlotinib for pancreatic cancer average increase life expectancy 2 weeks $660,000/QALYIn order to be most true to our status as providers, we must now ask ourselves whether these costs are worth it; whether they are adding to the quality of our patients’ EOL experience…[POLL]Image credit: http://santamariahomesinfo.com/image_store/uploads/3/8/0/6/6/ar126154248366083.jpg
Per patient family report.The more money spent in the final week of life, the more caregivers report physical distress and a subjective sense of a “worse death.”Turning that around: if less money is spent on a patient in their final week of life, their bereaved family perceives more quality in their care.[Discussion?]
With so many studies and so much understanding, why is that we have yet been unable to frustrate this rise in EOL cost?Clinical example: J Amer Geri Society in December 2011: When doctors and daughters disagree: Twenty-two days and two blinks of an eye. “For the daughters, the enormity of seeing their mother die abruptly was overwhelming, and prompt application of life-sustaining treatment during this sudden illness seemed natural, expected, mandatory.”Public example: San Jose Mercury News February 2012: The cost of dying: It’s hard to reject care even as costs soar. “This was the lesson of my father's passing: It is easy to get quick access to world-class treatment. It's much harder to reject it.” ($323,000)…and the loss of this clear line is a key factor in the determination of treatment intensity during this period of life…
Rosow’s triad at the bottom once again.Let’s begin by examining some of the organizational determinants…
124 hospitals in PA based upon surveys completed by administrators. All with p<0.001.Interestingly, when looking at hospital policies, programs and practices, the only variable associated with EOL treatment intensity was the presence of an ICU long length of stay review committee which was associated with greater treatment intensity.Ultimate conclusion of the article was that hospital practices/programs/policies seemed to explain little of the treatment variation in EOL care. It is interesting to note – and there was just another large study in Health Affairs this month confirming this – that we have not yet found hard and fast predictive factors for when a hospital is going to aggressively treat patients at EOL. Making it even more important that we work to understand our patients before they take that ambulance ride…Not attributable independently with teaching institutions or tertiary care centers. Another study, however, demonstrated that patients at teaching hospitals were more likely to receive curative therapy in the terminal phase of life (Prigerson 1992).**Did not look at any other “special populations.”So what makes it more likely that a patient wound end up in one of these hospitals receiving more intense EOL care…?Image credit: http://www.eugenicsarchive.org/images/eugenics/normal/1501-1550/1511-Hospital-ward-at-Ellis-Island.jpg
Note supply-sensitive care finding under environmental factors (we’ll come back to that).Pall med patients 70% die at home (vs. ~35% of patients on other services).Thinking about our patients further, what is it that makes them miss their passage over this line…?
“Death, Time & The Theory of Relativity.” J Pain & SymptMgmtThe changing value patients place on time as they realize that the end is immediately upon them.Failure of us to prepare them earlier!Because they haven’t been given a defined window of time for remaining life:“High value of life despite compromised quality,Others’ benefit from patient survival,Shifting reference points that increase life’s subjective value.” (Menzel, 2011.)Helps explain why one study shows that 20% of cancer patients receive chemo within 2 weeks of death! (Median interval between chemo and death is 57 days.) (Behl & Jatoi 2010.)[Discussion?]If we don’t give these patients the gift of time, these shifting references translate into an exponential valuation of quantity of time, which, if we graphed it, would probably look something like this…
This is a graph of cost to patients, families & the system compared to months remaining in life.Note the difference in cost between sudden death and those with less clear trajectories of dying. It is not, we must remember, just all about our patient, however…
“Correlation.”Before we move on, let’s remind ourselves about why this is important…Image credit: http://static.disaboom.com/content/images/articles/thumbnail/family-caregiver-suzanne-min_thumbnail1.jpg
JAMA.Family subjective QOL and no. of aggressive interventions.So what can we do to help our patients and their families define this time…?
This is all find and well, you’re saying, but I have to see a lot of patients in a day, it’s not clear to me when to start taking to people about this and, more than that, these conversations take time…
It is true that these discussions take time and can be a Pandora’s box. And I start this section by admitting fully that there are no studies that look at how much time they take nor is there any literature on ways to expedite them. Additional routine indications for discussions may include…
“Discussing overall prognosis with the very elderly.” NEJM
AHRQ recommends also asking patients for their preference in where they would like to die.Image credit: http://evolvedid.com/wp-content/uploads/2010/09/Values.jpg
Most importantly, clarify where this particular patient would draw “the line” that, for him or her, would mean an end to life prolongation. [Transition to outcomes of this conversation…]
The power of talking!JAMA: Multisite, prospective, longitudinal cohort study of pts with advanced cancer.More likely to prefer palliative care. More likely to be in outpt hospice for >1 week. Much less likely to undergo resuscitation. 1.6% vs. 11% likely to have mechanical ventilationPoint out cost savings with ICU non-admission.Remember that these costs savings were also accompanied by increased QOL scores!Now that we know our patient’s values history, let’s work to operationalize it…Image credit: http://img.wikinut.com/img/1.y4jp1yaxp_f9_v/jpeg/0/family-meeting.jpeg
“Need to refocus advance care planning efforts to help surrogates and clinicians make good decisions rather than simply enact patient’s prior decisions.” (White & Arnold, 2011.)ADs include MPOA and Living Will documentation as well as Provider Orders for Life Sustaining Treatment and AND orders. Living Will is a specific form of AD that takes effect when patient is terminally ill. Image credit: http://www.thehealthjournals.com/wp-content/uploads/2010/06/AdvanceDirective.jpg
Even though less than 1/3 have living wills, 70% indicate that they would not want “futile” care. (Hamlet et al., 2010.)Likelihood of having ADs related to income, net worth, location of residence (geographical variance). (Kelley et al., 2010.)Image: the more people who have ADs, and the more limiting they are, the less likely the region is to have high EOL spending. (October JAMA)Let’s look at the Living Will in a little more detail…Image Credit: Nicholas et al., 2011.
**Note that providers should be familiar with their institutional definitions/policies.“Different approaches have been proposed to define the ‘‘terminal’’ status: 1) by the patient ‘‘readiness,’’ that is, the patient is ready to address terminal issues when he or she is aware of his or her prognosis; 2) by the severity of illness: ‘‘Is this patient sick enough that it would not be a surprise if he or she would die within 6 months (or 3 or 12 months)?’’; and 3) by the prognosis expressed by the physician as the risk of dying at a time in the future.” (Simoenset al., 2010.)Pearls: -None of these documents meet health literacy standards.-A living will is almost never useful without a knowledge of the patient’s goals and values. Encourage them to author an addendum (the “Values Statement” document).WE also must help the patient choose their MPOA wisely…Image credit: http://livingwills.uslegal.com/files/2009/10/Living-Will_SubDomain.jpg
J Med Ethics March 2012: How family caregivers’ medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study. Tremendous burden that is being placed on surrogate decision-makers. Need to choose wisely. Need to facilitate an informed conversation. “…when there was a lack of knowledge about the patient’s expressed wishes, the family caregivers interpreted the patient’s non-verbal behaviour as purposeful expressions of a will to live.”“There was a discrepancy between the patients’ wishes against prolongation of treatment and the surrogates’ decisions to continue ANH [artificial nutrition and hydration] and other forms of life-sustaining treatment. The caregivers considered ANH as a form of basic care that could not be rejected.”We must ensure that our patients and their families can answer a few basic questions…
Alternatives: Project Grace, 5 WishesNow that we’ve operationalized their values history, let’s look at a few more things that we can do in the office…
Know, document and share the prognosis. On this graph from J Pain & SymptMgmt (2011), blue represents an accurate clinician estimated survival time.Obviously a whole talk unto itself!Pay close attention to ADLs before and after discharge. Hospital-associated disability: 41% die by one year, 29% remain disabled at one year, 30% returned to prior functioning. (Covinskyet al., 2011.)Great Clinician’s Corner on this topic in October 26 JAMA!Selby et al. 2011 in J Pain and SymptMgmt: clinician (palliative care at first evaluation) estimated survival correct 34% of the time and overestimated 54% of the time. More accurate if <24hrs, 1-7days or >1 year.Least accurate if 1-3mos, 3-6mos and 6-12mos (in this range, survival<prognosis). Christakis has demonstrated in the past that CES tends to be overestimated in CA and underestimated in non-CA Dx.Walter Prognostic IndexKarnofsky Performance IndexPalliative Performance ScaleFAST Scale in DementiaSeattle Heart Failure ModelEPERC Fast Facts & ConceptsCES more likely to be accurate if male or 30>PPS>70. They found that females were consistently more likely to outlive their estimate.(NEJM 12/2011: @85yo avg life expectancy is 6 years, 75% chance of living 3+ years, 25% of living 10+ years; 65% of elderly, mean age 78, wanted to know if they had less than 5 years to live)
NEJM.Transition to ACO opinion starting from this research…Image credit: http://www.shtfsurvival.com/wp-content/uploads/survival-seeds-1.jpg
American Society of Clinical Oncology Provisional Clinical Opinion:Therefore, it is the Panel’s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.”Transition to hospice…
“Of note, patients who received less than a week of hospice care had the same quality of life scores as patients who did not receive hospice at all, suggesting that patients benefit more from early hospice referrals.” (Wright et al., 2008.)Between 2003 & 2007, those in the last six months of life experienced:Increased hospice daysDecreased hospital daysIncreased ICU daysIncreased chance of being cared for by greater than 10 doctorsDecreased deaths in hospitalImage credit: Kyle Edmonds
From knowing our patients’ perspectives on EOL…to knowing their values and where they draw their “bright line”…it’s about ensuring that their voice is heard—either directly or through another. Because…
One prominent Australian CCM physician has likened it to a conveyor belt. IllnessambulanceED/Active resuscitationICUMechanical ventilation.Specialization & sub-specialization means that boundaries are blurred.Whether you’re in the office or the hospital or both, you will need to be vigilant and ever-aware of the importance of the values history.Image credit: upayacenter.org (accessed 2011).
That is my presentation, but first I want to direct your attention to:Ken Murray “How Doctors Die” on Zocalo Public Square.I want to thank Dr. Charles Daschbach for recommending this presentation and Dr. Carol Lockhart for accepting it, I have had lot of fun putting it together?Now I am happy to stand open for your questions and points of clarification…
‘Death Panel’ Discussions in a Primary Care Setting
• Identify two patient goals for end-oflife care and how these goals are
impacted by the prognostic window.
• Discuss the interaction between cost
and perceived quality in EOL care.
• List one patient factor and one
system factor that impacts location
• Identify one benefit of hospice care
“And if I got turned loose among a bunch of doctors, who knows what
• Measures of satisfaction at EOL:
• Pain control & symptom
• Practical support
• Enhanced caregiving
• Spiritual support
• Coordination of care
Lorenz et al., 2004.
• Permanent coma “worse than death”:
Kass-Bartelmes et al., 2010.
• Dementia “worse than death”:
Kass-Bartelmes et al., 2010.
Attributes on which patients and
Be mentally aware
Be at peace with God
Not a burden to family
Be able to help others
Have funeral arrangements
7. Not be a burden to society
8. Feel one’s life is complete
Steinhauser et al., 2000.
The prevailing tendency to avoid discussing the financial ramifications
of illness and medical care is not necessarily the preferable approach;
it diminishes the patient’s chances of shaping the end of life in a way
that is most compatible with their values and life plans.
Donley & Danis, 2011.
• $26,000/Medicare Beneficiary in
last year of life1
• Costs in last 6 months
• 27% of the Medicare budget2
• 70% of costs spent for
• 1/3 of expenditures during
last month of life4
1. Raphael et al., 2001. 2. Lubitz, 1993.
3. Fassbender, 2009. 4. Zhang et al., 2009.
Acute life-sustaining care during the final 30 days of life account for
70% of costs in the final year of life.
Zhang et al., 2009.
• Of those greater than 65 years
• Men live 6 of last 15 years
• Women live 8 of last 19 years
Raphael et al., 2001.
• Predictive of increased costs
• Degree of patient anxiety
• Degree of family anxiety
• Proximity of death
• Extreme dependence
• Younger age
Tibi-Levy et al., 2006.
• Diagnoses ending in death
1. Sepsis (17% death rate)
2. Respiratory failure (17% death rate)
3. Aspiration Pneumonia (13% death
Zhao & Encinosa, 2009.
Average caregiver: 49-year-old
woman working full-time and
dedicating 20hrs/week to care
for her mother for >5 years.1
1. Feinberg et al. 2011;
2. Fassbender, 2009.
• Patients with cancer
• 19% depleted savings
• 21% unable to pay for basic
• 9% had declared bankruptcy
• Families of patients with serious
• 31% spent all or most of personal
Donley & Danis, 2011.
People caught in the gravity of approaching death encounter a
profound distortion of how time is experienced and valued. Each
moment becomes increasingly precious as death draws near…time
offers the possibility for final words, a last embrace, finding spiritual
peace and, occasionally, even reconciliation.
• Caregivers of those who received
any aggressive care at EOL:
• More Major Depressive Disorder
• More feelings of regret
• Greater feelings of
unpreparedness (for the death)
• Worse Quality of Life scores
Wright et al.,2008.
Barriers to more widespread end-of-life support in primary and
specialty care settings include limited time and resources, discomfort
with the topic and reluctance to give up hope of recovery.
Hamlet et al., 2010.
• What makes life most worth living for
• Would there be any circumstances under
which you would find life not worth living?
• What do you consider your quality of life
to be like now?
• Have you seen or been with someone who
had a particularly good death or
particularly difficult death?
• Following EOL discussion with
• No increase in mood disorders!
• More likely to accept terminal
status (53% vs. 29%)
• More likely to have completed
Do Not Resuscitate (63% vs. 29%)
• Less likely to be admitted to
ICU (4.1% vs. 12.4%)
Wright et al., 2008.
• Advance directives
• Medical Power of Attorney
• Living will
• (Provider Orders for Life
• (Portable DNR/AND Orders)
See: SJHMC Policy #27053.
• 90% have heard of a living will
• 71% have thought about their EOL
• 29% have a living will (up from 12%
Pew Research Center, 2006.
Morse et al., 2011.
“Use this Living Will form to
make decisions now about your
medical care if you are ever in a
terminal condition, a
persistent vegetative state or
an irreversible coma. You
should talk to your doctor about
what these terms mean.”
State of Az Living Will Form, Accessed 2011.
The majority of family caregivers said that they were aware of
aforementioned wishes of the patient that could be applied to the
[vegetative state] condition, but did not base their decisions
primarily on these wishes. They gave three reasons for this: (a) the
expectation of clinical improvement, (b) the caregivers’ definition of
life-sustaining treatments and (c) the moral obligation not to harm
Kuehlmeyer et al.., 2012.
1. On a scale of 1 to 5, where do you fall on this continuum?
Let me die without
Don't give up on me no matter what, try any
proven and unproven intervention possible
2. If there were a choice, would you prefer to die at home, or in a hospital?
3. Could a loved one correctly describe how you’d like to be treated in the
case of a terminal illness?
4. Is there someone you trust whom you’ve appointed to advocate on your
behalf when the time is near?
5. Have you completed any of the following: written a living will, appointed a
healthcare power of attorney, or completed an advanced directive?
The One Slide Project
• Early Pall Med involvement
with NSCLC patients:
• Better quality of life
• Fewer depressive symptoms
• Less aggressive care
• Longer survival (11.6 months
vs. 8.9 months)
Temel et al., 2010.
…patients with metastatic non–small-cell lung cancer should be
offered concurrent palliative care and standard oncologic care at
initial diagnosis…substantial evidence demonstrates that palliative
care—when combined with standard cancer care or as the main
focus of care—leads to better patient and caregiver outcomes.
Smith et.al., 2012.
• Enrolled patients:
• Increased quality of life
• Decreased symptom burden
• Decreased odds of dying in
• Greater feelings of closure
…the individual, however sick, remained a person whose voice
deserved to be heard.
• Patients want to die comfortably at
home, without conflict, with dignity.
• EOL is costly to patients, families and
the system; patients want to know.
• Providers need to be taking a values
• The most important aspect of end-oflife care is anticipation.
• The greatest gift we can give patient’s is
the gift of time.
For a full solution, good care for the dying now needs to be seen as
a problem that needs a parallel public and professional discussion
at what I will loosely call the philosophical level. Two basic
questions need to be put on the table. One of them is what we take
to be the place of death in human life, and the other, that of the
place of death in medicine and health care.
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