End of Life: Ethics, Dilemmas, and Decisions Ezekiel J. Emanuel, M.D., Ph.D

End of Life: Ethics, Dilemmas, and

Decisions

Ezekiel J. Emanuel, M.D., Ph.D.

End-of-Life Care: USA

• Most people are very dissatisfied with end-of-life care in the USA.

• Too impersonal and undignified• Too often in the hospital not at home• Too often attached to machines• Too expensive

End-of-Life Care: USA

“[End of life care in America] is all about extracting the last dime first from private wealth …until all excuses run out and the patient is finally and mercifully allowed to die.Not only has the system gradually turned into a gigantic financial racket that plays on people’s normal sense of wanting to prolong life as much as possible; it is the cause of wrecked families, massive heartache and terrible suffering spread far and wide, not to mention pillaged family estates.”

-Jeffrey A. Tucker, Fellow of the Foundation for Economic Education

End-of-Life Care: USA

"…The health care system is poorly designed to meet the needs of patients near the end of life...The current system is geared towards doing more, more, more, and that system, by definition, is not necessarily consistent with what patients want and is also more costly.”

-David Walker, Co-Chair of the IOM Committee on “Dying in America”

End-of-Life Care: USA

• 80% of patients with chronic diseases want less aggressive end-of-life care.

• 70% of Americans would prefer to die at home.

End-of-Life Care: USA

Hospitalization in the last 90 days

ICU in the last 30 days Mean ICU days in the last 90 days of life

Mean hospice days in the last 90 days of life

0

10

20

30

40

50

60

70

80

200020052009

End-of-Life Care: USA

• Roughly 25% of Medicaire spending for health care is for the 5-6% of beneficiaries who are in their last year of life.

• This totals to almost $150 billion.

End-of-Life Care: USA

• Is this picture of end-of-life care in the USA true?

End-of-Life Care: USA

• Some areas of improvement: Significantly fewer deaths in hospital. Significantly greater use of hospice

for longer.

End-of-Life Care: USA

2000 2005 20090

5

10

15

20

25

30

35

Percent of Deaths in an Acute Care Hospital

Four Questions About End-of-Life Care

• Is this picture limited to the USA?• What is the right picture about current

end-of-life care practices?• Can euthanasia and PAS improve end-

of-life care?• What can be done to improve end-of-

life care?

End-of-Life Care Worldwide

“As a Scottish-Canadian-Californian, I have always said that I have a unique perspective on health care and all things to do with health care, including death and dying: The Scots see death as imminent. Canadians see death as inevitable. And Californians see death as optional... Americans and the American health care system are uncomfortable with the inevitability of mortality.”

-Ian Morrison, President Emeritus of the Institute for the Future

End-of-Life Care Worldwide• When it comes to

death the USA is often viewed as “peculiar”. Death optional.

• Is this picture of end-of-life care limited to the USA?

• Is this picture true of Australia? Europe?

End-of-Life Care

• Limited comparative data on end-of-life care.

• But what we have suggests the USA is not “peculiar” or unique when it comes to end-of-life care.

End-of-Life Care: Australia

• In last year of Percent with ER visit: 70.0% Mean number of ER visits: 1.9 Mean number of hospitalizations: 7.6 Mean number of days per

hospital stay: 5.6 Deaths in hospital: 61.5%

(Limited to Perth)

Change Points for Hospitalization in the Last Year of Life in

Australia

Medical Journal of Australia

End-of-Life Care: Worldwide

• There is a disconnect between preferences and site of death.

• Many patients with cancer die in the hospital in other developed countries.

End-of-Life Care: Worldwide

Annals of Oncology

England Flanders Germany Italy Netherlands Portugal Spain0

10

20

30

40

50

60

70

80

90

Percent Preferring to Die at Home

What is the Truth About End-of-Life Care?

Place of Deaths in Noncancer and Cancer Occurrences

*In the Norwegian death certifications, institution was used a category, without a distinction between care home and hospital Journal of Clinical Oncology

Belgium Netherlands Norway* England Wales0

10

20

30

40

50

60

70

80

90

100

NoncancerCancer

Comparison of End-of-Life Resources

Countries:1. Belgium2. Canada3. England4. Germany5. Netherlands6. Norway7. United States

Disease: Cancer

Year: 2010

Death in an Acute Hospital

Belgium

Canad

a

Englan

d

German

y

Netherl

ands

Norway

United

Stat

es0%

10%

20%

30%

40%

50%

60%

Hospitalization in theLast 180-Days of Life

Belgium Canada England Germany Netherlands Norway United States0

10

20

30

40

50

60

70

80

90

100

ICU Admissions in the Last 180-Days of Life

Belgium Canada England* Germany Netherlands Norway* United States0

5

10

15

20

25

30

35

40

45

*Data is not available for England and Norway

Chemotherapy in the Last 180-Days of Life

Belgium Canada England* Germany Netherlands Norway United States0

5

10

15

20

25

30

35

40

45

*Data is not available for England

Costs in the Last 180 DaysMean Per Capita Hospital Expenditures

Belgium Canada England* Germany Netherlands Norway United States0

5000

10000

15000

20000

25000

Hospitalization in theLast 30-Days of Life

Belgium Canada England Germany Netherlands Norway United States0

10

20

30

40

50

60

70

ICU Admissions in the Last 30-Days of Life

Belgium Canada England* Germany Netherlands Norway United States0

2

4

6

8

10

12

Chemotherapy in the Last 30-Days of Life

Belgium Canada England* Germany Netherlands Norway United States0

2

4

6

8

10

12

14

*Data is not available for England

Costs in the Last 30 DaysMean Per Capita Hospital Expenditures

Belgium Canada England Germany Netherlands Norway United States0

1000

2000

3000

4000

5000

6000

7000

8000

9000

10000

Cost and Deaths at End-of-Life

End of Life Care Isn’t Great Anywhere

End-of-Life Care: Worldwide

• The USA is not the worst and is not peculiar.

• All developed countries are not providing optimal care.

• But there have been improvements. A reason for hope.

Can Euthanasia and Physician Assisted Suicide Improve

End-of-Life Care?

Euthanasia and PAS

• Many people believe the solution to bad end-of-life care is euthanasia and PAS.

• These interventions are Painless Flawless Quick

Definitions

• Euthanasia:

When a physician or someone else administers a medication, such as sedative and neuro-muscular relaxant, or other intervention, to intentionally end a patient’s.

• PAS:

Definitions

• PAS:

When the physician—or someone else—provides medication, a prescription, or other intervention to a patient at his or her request with the understanding that the patient intends to use the medications or other intervention to end his or her life.

Legal Status: Worldwide

Public Opinion

• Framing effects on the polling. • Wording of the question makes a big

difference.

Public Opinion

20

30

40

50

60

70

80

U.S. public support for VAE/PAS/PAD

A

1945 1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000 2005 2010 2014

VAE (Gallup)

PAS/PAD (Gallup)

VAE (General Social Survey)

VAE (Gallup): “When a person has a disease that cannot be cured, do you think doctors should be allowed by law to end the patient's life by some painless means if the patient and his family request it?”

VAE (General Social Survey): “When a person has a disease that cannot be cured, do you think doctors should be allowed by law to end the patient's life by some painless means if the patient and his or her family request it?”

PAS/PAD (Gallup): “When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should not be allowed by law to assist the patient to commit suicide if the patient requests it?”

Note: Margin of sampling error = +/-4% for Gallup; +/-3% (roughly) for General Social Survey

US Public Support for Physician Assisted Death (PAD)

Public Support: USA

• Stronger support among

Men Non-religious Better educated

Public Support: Australia

• “Terminally ill patients should be able to legally end their own lives with medical assistance”

74% of Australians agree

Public Support: Europe

Question: Please tell me whether you think euthanasia (terminating the life of the incurably sick) can always be justified, never be justified, or something in between. Rated on a scale from 1 (never justified) to 10 (always justified).

Differences

• Plateau in USA support since early 1990s. No plateau in Europe.

• USA Catholics tend to be more opposed, but, in Europe, no apparent religious difference.

Paradox in USA

• Unclear why in the USA public support increase from 1990s took to 2010s to change laws.

• Unclear why laws in USA permit PAS but not euthanasia, yet public support is stronger for euthanasia.

Physician Support

• Typically fewer than half of physicians support legalizing euthanasia and PAS.

• Physician support for euthanasia and PAS is consistently lower than public support.

• Physicians tend to support PAS more than euthanasia.

Physician Support for PAD

Physician Support: Netherlands

Have performed

euthanasia or PAS

Would perform euthanasia or

PAS

Never would perform

euthanasia or PAS

Overall 60% 86% 14%

Cancer 56% 85% 15%

Psychiatric condition

2% 34% 66%

Advanced dementia with ACD for euthanasia

0.5% 29% 71%

Tired of living without medical suffering

2% 18% 82%

Physician Support: USA

Metastatic cancer with excruciating pain

Medical Oncologists

Surgical Oncologists

Radiation Oncologists

Pediatric Oncologists

Euthanasia 5.3% 12.7% 6.8% 13.7%

Physician-Assisted Suicide

20.5% 32.2% 26.5% 30.9%

Physician Support

• In all countries, surgeons and nurses tend to be more supportive than medical oncologists and palliative care physicians.

Patient Motivations• What motivates

patients to want euthanasia or PAS?

PAIN

Excruciating and unremitting pain.

Patient Motivations

• Pain is the wrong answer.

Patient Motivations

Patient Motivations

• If the main motivation for euthanasia and PAS are mental health issues not pain, what is due care?

• Is it ethical to end a patient’s life who is depressed or “tired of life”?

What is Due Care?

• Marc van Hoey is a Belgian physician and President of the Flemish Death with Dignity Association.

• Conducts 15-20 euthanasia cases per year.

What is Due Care?

• Simona de Moor—85 year old patient in excellent health.

• 57 year old daughter died suddenly after a routine surgery.

• Ms. De Moor was grief stricken.• Treated with anti-depressants.

What is Due Care?

• Ms. De Moor wanted to die.

• Dr. van Hoey determined her psychological suffering to be unbearable “which would never, never heal.”

What is Due Care?

• In front of an Australian documentary film crew, Dr. van Hoey gave Ms. De Moor liquid barbiturate which she swallowed and died.

• Did he provide “due care”?

What is Due Care?

• All Belgian euthanasia and PAS cases should be reported to 16 member Federal Euthanasia Review and Evaluation Commission.

• If more than 1/3 of the Commission does not think the law is complied with they refer it to the prosecutor.

• Dr. van Hoey first case in about 10,000 since 2002 referred to the prosecutor.

Practices

• Surveys of physicians. Older data.

• Best data from reports to offical bodies and death certificate studies.

• But reports are not comprehensive. In Belgium and Netherlands reports cover about 70-80% of cases.

Practices: USA

• American physicians Ever received a request for

PAS 18%

Ever received a request for euthanasia 11%

Ever complied with a request for PAS 3%

Ever complied with a request for euthanasia 5%

Practices: USA

Oncologists Euthanasia Physician-Assisted Suicide

Requests during a career 38.2% 56.2%

Performed during a career 3.7% 10.8%

Practices: USA

• Oregon and Washington state• No data on the number of physicians

who have received requests for PAS.

Number of prescriptions

Number of physicians

Percent of all

physiciansOregon 155 83 0.6%

Washington 176 109 0.4%

Practices: Netherlands

• 60% of Dutch physicians have ever performed euthanasia or PAS

Practices: Europe

• Dutch Pediatricians Ever received request for

euthanasia or PAS 6% Ever performed euthanasia

or PAS 5% Performed euthanasia or PAS

in the last 2 years 2%

PracticesOregon Washington

stateNetherlands Belgium France

Euthanasia 0 0 2.8% 4.6% 0.8%

Physician-Assisted Suicide

0.3% 0.2% 0.1% 0.05% 0

Lethal drugs without consent

-- -- 0.2% 1.7% 0/6%

PracticesOregon Washington

stateNetherlands Belgium

Cancer 78% 76% 76% 73%

Neuro-degenerative diseases

8% 12% 6% 6%

Mental -- -- 2% 4%

PracticesOregon Washington

stateNetherlands Belgium

Age, over 65 69% 71% -- 72%

B.A. degree 46% 49% -- 25%

White 97% 95% 81% (Dutch)

Problems and Complications

• Oregon: Regurgitation 2.6% Regained consciousness 0.7%

Median time between swallowing barbiturates and death was 25 minutes but outer limits of time was 104 hours—4 days.

Problems and ComplicationsNetherlands

PAS Problems—eg difficulty swallowing 9.6% Regained consciousness 1.8% Long time to death 12.3%Euthanasia Problems—no vein 4.5% Complications—siezures, vomiting 3.7% Regained consciousness 0.9%

Slippery Slope

• Children are now permitted euthanasia in Netherlands and Belgium

• 15-20 infants with spina bifida receive euthanasia.

Slippery Slope

1990 1995 2001 2005 2010 1998 2001 2007 20130%

1%

2%

3%

4%

0.8%0.7% 0.7%

0.4%0.2%

3.2%

1.5%

1.8%1.7%

Belgium

Overall Assessment

• Euthanasia and PAS are used by a small minority of patients. They will never “solve” the end-of-life care issue for the vast majority—over 95%-- of dying patients.

• Euthanasia and PAS are not necessarily flawless or quick.

Overall Assessment

• Most patients who want euthanasia and PAS are not in pain and not suffering intolerable physical symptoms.

• Euthanasia and PAS are about mental health issues—depression, tired of life—and control issues—autonomy.

How can we Improve End of Life Care for the Vast Majority

of Dying Patients?

Improving End-of-Life Care

• Focus on the physician who makes decisions.

• Require physicians and nurses complete an advance care directive with their spouse.

Improving End-of-Life Care

• Train physicians in end-of-life communication skills.

• Provide physicians real time data on their dying patients and dead patients.

Improving End-of-Life Care

• Provide palliative care at home to all dying patients as a default.

• NO CHOICE by physicians. • Patients get unless they refuse it.• Create an alternative number for

patients and families to call in an emergency. So they do not get the ambulance-to-hospital-to-ICU suffle.

Improving End-of-Life Care

• Might provide a financial incentive for providing optimal care.

Conclusions

• End-of-life care is not optimal anywhere among developed countries.

• The USA is not peculiar. All countries face problems. They differ but they fail to achieve high quality care at home.

Conclusions

• Euthanasia and PAS are not solutions to the problems associated with suboptimal end-of-life care.

For a small minority of patients Not necessarily quick, flawless, painless Mainly about mental health and autonomy

issues

Conclusions

• Improving end-of-life care requires making proper care the default not discretionary.