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Natural Death: Is it Even Possible Anymore?

Sean Marks MDAssociate ProfessorPalliative Medicine

Medical College of Wisconsin

Conflicts of Interest Slide

• No financial interests influenced this talk

• But…as you listen, it may be worth noting that

– As a PC consultant at a tertiary care hospital it can be easy to view one’s role as conflict manager

– And these experiences, likely did bias this talk!

Objectives• Practice Based Learning and Improvement– Examine how natural death is conceptualized in the

published medical literature.• Medical Knowledge– Identify 5 chronic illnesses for which advances in

life-prolonging therapies have significantly influenced the end-of-life decision-making process.

• Patient Care– Outline care strategies which will help our patients

navigate the exhausting end-of-life decision-making process in the era of unnatural deaths.

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Seymour JE. Soc Sci & Med 1999;49:691-704; Callahan D. Hastings Report 1977; 32-7; Singer PA, et al. JAMA 1999; 281:163-8.

Do clinicians want their patients to have a “natural death”?

Do clinicians want their patients to have a “natural death?”

• I believe we do!– We are increasingly utilizing hospice in the hopes of

fostering more natural deaths for our patients.– We aim to avoid “bad deaths”

• We even measure chemo use; ER visits; CPR in last month of life utilized to assess the quality of EOL care.

– Overuse of “aggressive” or “futile” care is the #1 cause of clinician moral distress especially in the ICU.

– You hear it in our language: e.g. “Allow Natural Death” instead of DNR/DNI

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Do cerebral bioethicists want to preserve the concept of a natural

death?• YES!– Without a definition of ‘natural death’ we will not be

able to specify some rational limits to the aspirations of…research and the medical care that ought to be invested to keep people alive.

– A concept of natural death is imperative for us to know what is reasonable to hope for; the alternative is both spiritual and psychological chaos.

• Callahan D. Hastings Report 1977; 32-37.

So, what does end of life care look like today in the US?

First: We’re Getting Sicker

• Baby Boomers: – sicker than their predecessors, but also living long

enough to develop multiple chronic and progressive illnesses.

“Neither the medical system nor most seniors are prepared for the financial and emotional

crisis ahead.”

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Second: there’s tremendous variability in our health care systems

• Dartmouth Atlas Report:– Where you live is a bigger determinant on the

aggressiveness of the end-of-life (EOL) care plan than the patient’s preference.

– Geographic areas of increased aggressiveness à• More time seeing specialists during EOL• More days in the hospital• More likely to die in the ICU

2014 IOM: Dying in America

• EOL care has greatly intensified.• Most Americans die in the hospital even

though 80% of Americans wish to die at home.• Even though the # of people receiving hospice

care has increased since 1982, referrals for hospice happen later in the dying process.– Significant trend of referrals <3 days before death

2014 IOM Dying In America Report

• Why?

2014 IOM Dying In America Report

• Why?– For most common chronic illnesses there are

more targeted/less toxic life prolonging therapies available to patients.

– Patients want access to these therapies

– Clinicians/patients/family members have more of and more complex care decisions to make.

– Hospice requirements that patients renounce curative care are increasingly seen as barriers.

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Americans: You want EOL care options?

YOU GOT IT!

EOL Care Options

• At the very least, our patients now need to make more active decisions to decline standard of care therapies to attain a more natural death.

• When active decisions are made to forgo medical therapies is that really a “natural death”?

• What are the emotional consequences of these decisions?– Guilt? – Exhaustion? – Patient/family discord?

The emotional impact of making health care decisions can lead to post traumatic stress reactions lasting months if not years. - Wendler D. 2011

How many times in the last year has a seriously ill patient said to you,

“I wish I would just die in my sleep?”

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Let’s Take a Tour of Some Common Medical Illnesses Today Advanced Heart Failure

• Wider utilization of Ventricular Assist Devices,

ECMO, Total Artificial Hearts, Intra-aortic balloon

pumps, Heart Transplantation…

• Not only do patients who receive these therapies

often live longer, but better.

• Consequently more AHF patients are being

evaluated as candidates for these therapies

VAD Survival Yet…

• Narrow window of opportunity for these advanced therapies

• Requires a degree of medical sophistication from the patient to be a good VAD candidate– Adequate social support, history of adherence

with medical therapies, ability to learn new tasks• Harsh realities remain– Only 1 in 12 referred patients are VAD candidates– If you don’t receive a VAD, 80% 1-year mortality

on optimal med therapy for AHF

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Furthermore…

• It’s not just the VAD, there’s other options to consider– Bi-V Pacemakers– Milrinone infusions– Implantable defibrillators– Beta blockers/Ace inhibitors/Statins• Firmly entrenched into cardiac definition of quality care

• Leads to more discussions about when to stop/deactivate cardiac therapies

• What’s the psychological effect of this on our patients and families?

– Guilt or even embarrassment for those who decline or are declined for such therapies

– More MD visits to be evaluated for such therapies– For rural patients, the option of a tertiary referral

becomes standardized.– More reminders and regret of past behaviors or

decisions?

What if they get a VAD?• The case of Mr. C• If a patient eventually decides to stop the VAD due to

QOL concerns or medical complications, the transition point of care often occurs in the hospital.

• Why? Extensive informed consent discussions needed.• Anticoagulation?• Milrinone gtt?• Use of vasopressors?• When to turn off the VAD (home vs hospital)?• Pharmacologic care plan when VAD discontinued?• Code status?• Cardiac meds – diuretics?• Then once all that was settled…

VAD Care• The case of Mr. C• If a patient decides to stop the VAD either due to QOL concerns or complications, the transition point often occurs in the

hospital.• Why? Requires extensive informed consent discussions.

• Anticoagulation?• Milrinone gtt?• Use of vasopressors?• When to turn off the VAD (home vs hospital)?• Pharmacologic care plan when VAD discontinued?• Code status?• Cardiac meds – diuretics?• Then once all that was settled…

–Donate the VAD equipment after death: yes or no?

• Once that was settled…

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Mr. C woke up!

And we had the same discussions all over again.

What happened to Mr. C?

• After 4 goals of care meetings involving the patient, family, PC, AHF, cardiology, RN, SW, nephrologist, neurologists, hospice team…– Discharged home.– VAD and milrinone gtt turned off that night – Died 1 day later with his family at bedside– Bereavement call 3 days post death: • Wife found solace that her husband died at home the

way he said he wanted but…

Wife of Mr. C

“Everyone said this would be a way to help him die more naturally, but nothing about

this felt natural.”

What about the home hospice team?

• They provided

– Near round the clock specialized nursing care on a

weekend for the patient

– A hospital bed, Foley, oxygen, etc

– Chaplain support

– Milrinone gtt, IV tubing and poles

– IV opioids and benzodiazepines

• And were reimbursed about $300.

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Other Illness Trajectories: Respiratory

• Wider adoption and utilization of NIPPV and high flow oxygen systems– E.g. Bilevel support, Optiflow, Vapotherm

• More palliative options to conside.• But also, can result in agonizing decisions of

when to stop and disposition challenges of transitioning to home or hospice settings

Renal Disease

• From the 1990’s to mid 2000’s:– more Renal Replacement Therapy initiation in

ages 80-85

• Why? – More reported cases of renal transplant

successfully improving the lives of elderly patients.

Neurologic Illness

• Anoxic brain injury: hypothermia protocols• Parkinson Disease: deep brain stimulators• CVA: tPA, early interventional approaches• Dementia: …an example where the standard

of care has shifted away from the standard use of “aggressive” therapies like artificial feeding tubes, nutrition, and hydration and more toward comfort care with illness-related dysphagia?

Dementia (cont’d)

• Yet, since 2003…

– growing trend for NH residents to die in the

hospital• Temkin-Greener H, et al. J Am Med Dir Assoc 2013;14(10):741-8.

– Growing trend for NH residents to suffer from a

multitude of chronic, progressive illnesses in the

last year of life and have less functional

independence in the last 3 months of life.• Davies EA, Higginson IJ. WHO, 2004)

• Kasper PJ, et al. Pall Med 2012; 27: 544-52.

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What about Cancer?

“This ain’t your grandpa’s chemo anymore”• Targeted systemic therapies, immunotherapies,

CAR T Cell Therapies• 20% reduction in mortality risk between 1991

and 2010. 2020?• Siegel R, et al. Cancer Statistics 2014. Ca Cancer J Clin 2014;64:9-29

• Systemic therapies are often much better tolerated and some can even be available as pills.

• This has led to a shifting role of chemotherapeutics as maintenance therapy.

Rising Survival & Cost in Cancer Care

1975-77 49%

1987-89 55%

2003-09 68%

2006 $104 billion

2010 $138 billion

2020 $158-173billion*

5-Year Survival Rates (%)All Cancer Types in US

Annual Direct Costs for Cancer Care

Siegel R, et al. Ca Cancer J Clin 2014; 64: 9-29Mariotto AB, et al. JNCI 2011;103:1-12

But also..

• Significant increase in EOL health-care utilization:

– ED visits/hospitalizations/ICU stays/systemic cancer

therapy in the last weeks of life

– Initiation of hospice services < 3 days before death

• Earle CC, et al. Journal of Clin Onc 2004; 22: 315-21.

• By the time the transition to comfort care occurs,

– Patients are more adapted to a cancer treatment

milieu

– Comfort care is a big change in normalcy

– Sense of abandonment from oncology providers?

• There is prospective data, that as patients’ disease progresses and their care gets more complex,

– They may be MORE likely to change their mind about dying at home.• Gerrard R, etal Pall Med 2011; 25:333-6.

• Why?

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“No Place Like the Hospital”

• Round the clock nursing care from some of the most

talented/knowledgeable/compassionate EOL RNs in the US

• At your fingertip access to PC and other specialists

• Access to palliative interventions

– XRT, palliative surgeries, infusions, optiflow, celiac plexus blocks

• Access to IV pharmacotherapies

• Access to SWs, chaplains

• Access to familiar specialists and clinicians.

• Private room

• No room and board fee

• High class chefs, massage therapists, music thanotologists!» Gillick MR, Sabin JE. Journal of Pain and Sympt Manage 2011(42): 643-648.

Summary Points

• The concept of natural death…– Meaning you comfortably succumb to an

underlying illness beyond one’s control at home• is becoming a thing of the past.

If you want that “George Washington” death, then you must make strategic decisions to

achieve it.

Speaking of George Washington What do we do about this?

• Let’s reframe our concept of natural death.– Considering what’s involved, isn’t it now natural

for human agency to be heavily intertwined with the dying process?

• Let’s accept our clinical role in complex shared decision-making regarding as part of the modern dying process.

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Let’s reframe our concept of “natural death” to mean that:

• Medical care was accessible to our patients

• The medical care “fit” with the wider context of the person’s values, life, and illness.

What do we do about this?

• Acknowledge that our concept of a natural death may be different from the values of our patients.

• Advocate for more collaborative and novel care models for dying patients– Open-access hospice models or other unique care

models that entwine comfort and life prolonging care.– As opposed to all or nothing care models

The evolving role of hospice

• Let’s recognize the wonderful care and support our patients families receive from hospice through grueling care transitions

• Hospice is uniquely designed to help patients get off the path of constant decision-making

• But– The current financial model of reimbursement is likely

untenable for them considering the future growing complexities in EOL care.

• Growing trend of hospice care coming to the hospital?

Evolving Role of the PC Clinicians

• Fortunately now, in many hospitals, we’re hear to help!

• But we also need your help.

• We’re no substitute for a good primary team.

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The Evolving Role of Internists

• Hospitalists likely will be intertwined with EOL decision-making: – When to withdraw life sustaining treatments, Leading

goals of care meetings, etc.

• PCPs, less involved?

• Growing need for hospitalists to attain core palliative care skills – communication during a medical crisis, hospice awareness, prognostication, etc.

• Growing need for hospitalists to “go out on a limb” – Offering guidance and recommendations even when we

may not be 100% certain what’s the right thing to do.

Subway Sandwich Model For EOL Care

“I DON’T KNOW. YOU’RE THE SANDWICH GUY.

YOU TELL ME WHAT I SHOULD HAVE.”

References• Callahan D. On defining a natural death. Hastings Center Report 1977; 32-37• Seymour JE. Revisiting medicalization and “natural” death. Social Science & Medicine 1999; 49: 691-704.• Dartmouth Atlas• IOM Dying in America Report 2014• Pollan, Michael (2006). The Omnivore's Dilemma : A Natural History of Four Meals. Penguin Books.• Matlock DD, Stevenson LW. Life-saving devices reach the end of life with heart failure. Prog Cardiovasc Dis 2012;55:274-81• Slaughter MS, et al. Advanced heart failure treated with continuous flow left ventricular assist device. N Engl J Med 2009;361(23):

2241-51• Fang JC. Rise of the machines – left ventricular assist devices as permanent therapy for advanced heart failure. N Eng J Med 2009;

361:2282-5.• Allen LA. Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation

2012;125:1928-52.• Back AL, et al. Reframing the goals of care conversation: “we’re in a different place.” Jour of Pall Med 2014; 17(9): 1019-24.• Mariotto AB, et al. Projections of the cost of cancer care in the United States: 2010-2020. JNCI 2011:103:1-12. National Cancer

Institute. Cancer trends progress report 2009/2010 update.• Smith TJ, Hillner BE. Bending the cost curve in cancer care. NEJM 2011; 364: 2060-65.• Earle CC, et al. Trends in the aggressiveness of cancer care near the end of life. Journal of Clin Onc 2004; 22: 315-21• Harmon A. Target Cancer: After Long Fight, Drug Gives Sudden Reprieve. New York Times February 22, 2010.• Gerrard R, et al. Pall Med 2011; 25:333-6; Townsend JFA, et al. BMJ 1990; 301:415-7• Temkin-Greener H, et al. Site of death among nursing home residents: changing patterns 2003-2007. J Am Med Dir Assoc. 2013

Oct;14(10):741-8• Davies EA, Higginson IJ. Better palliative care for older people. Copenhagen: World Health Organization, 2004• Kaspers PJ, et al. Changes over a decade in end of life care and transfers during the last 3 months of life: a repeated survey among

proxies of deceased older people. Pall Med 2012;27: 544-552• Fried T, et al. Older persons preferences for site of terminal care. Ann Intern Med 1999;131:109-112.