‘Death Panel’ Discussions in a Primary Care Setting

Kyle P. Edmonds, MD

St. Joseph’s Hospital & Medical CenterPGY-3, Department of Family Medicine

∞2012 Fellow, Institute for Palliative Medicine

San Diego Hospice

‘Death Panel’ Discussions in a Primary Care Setting:

Office-based practices that impact care at the end of life

An Arizona Bioethics Network Webinar

• Identify two patient goals for end-of-life 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 of death

• Identify one benefit of hospice care for patients.

Objectives

“And if I got turned loose among a bunch of doctors, who knows what would happen?”

Quill, 2000.

• Measures of satisfaction at EOL:• Communication• Pain control & symptom management• Practical support• Enhanced caregiving• Spiritual support• Continuity• Coordination of care

Patient Goals: Metrics

Lorenz et al., 2004.

• Permanent coma “worse than death”:

Patient Goals: Shifting Reference Points

Kass-Bartelmes et al., 2010.

• Dementia “worse than death”:

Patient Goals: Expect the Unexpected

Kass-Bartelmes et al., 2010.

Attributes on which patients and physicians differ:

1. Be mentally aware

2. Be at peace with God

3. Not a burden to family

4. Be able to help others

5. Pray

6. Have funeral arrangements planned

7. Not be a burden to society

8. Feel one’s life is complete

Patient Goals: Points of Departure

Steinhauser et al., 2000.

Patient Goals: Require Time

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.

End-of-Life Cost Determinants

Cost

Patient/LOA Preference

Physician Counselin

g

Family Preference

Availability of Legal

Documents

Organizational Determinants

Private/Public Payment Models

Life Expectanc

y

Opportunity Cost

Caregiver Direct & Indirect Costs

Patient Expenditures

& Lost Productivity

• $26,000/Medicare Beneficiary in last year of life1

• Costs in last 6 months• 27% of the Medicare

budget2

• 70% of costs spent for inpatient care3

• 1/3 of expenditures during last month of life4

EOL Cost Determinants: Overall

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 old:•Men live 6 of last 15 years with disability•Women live 8 of last 19 years with disability

EOL Cost Determinants: Patient

Raphael et al., 2001.

• Predictive of increased costs• Degree of patient anxiety• Degree of family anxiety• Proximity of death• Extreme dependence• Younger age

EOL Cost Determinants: Patient

Tibi-Levy et al., 2006.

• Hospital Cost Sources• 62% staff• 23% logistical• 5% overhead• 5% medications• 1% disposable

devices• 1% diagnostic tests

Hospital Death: $17.6B

Medicare: $10B

Private: $3.6B

Medicaid: $2.2B

Uninsured:

$0.59B

EOL Cost Determinants: Hospital

Simoens et al., 2010.

• Diagnoses ending in death

1. Sepsis (17% death rate)

2. Respiratory failure (17% death rate)

3. Aspiration Pneumonia (13% death rate)

EOL Cost Determinants: Hospital

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

$196 billio

n

1999

$450 billio

n

2009

More than total 2009 Medicaid

payouts!

EOL Cost Determinants: Opportunity

1. Feinberg et al. 2011; 2. Fassbender, 2009.

• Patients with cancer• 19% depleted savings• 21% unable to pay for basic necessities• 9% had declared bankruptcy

• Families of patients with serious illness • 31% spent all or most of personal savings

EOL Cost and Personal Finances

Donley & Danis, 2011.

EOL Cost and Patient Satisfaction

Zhang et al., 2009.

…the improvements in medical technologies increase the difficulty of finding a bright line between living and

dying.

Callahan, 2011.

The Line Between Living and Dying

Kelley et al., 2010.

• Organizational determinants of intensity of EOL care• High bed capacity• Increased market competition• Increased percentage of African American patients**


Lin et al., 2009.


Gomes & Higginson, 2006.

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.

Chochinov, 2011.


Fassbender, 2009.

• 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

The Line Between Living & Dying

Wright et al.,2008.

The Line Between Living & Dying

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.

Taking Action in the Office: Timing

Quill, 2000.

Taking Action in the Office: Timing

Smith et al., 2011.

•What makes life most worth living for you?•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?

Taking Action in the Office: History

Quill, 2000.


Quill, 2000.

• Following EOL discussion with physician:• 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 Sustaining Treatment)• (Portable DNR/AND Orders)

Taking Action in the Office: Documents

See: SJHMC Policy #27053.

• 90% have heard of a living will

• 71% have thought about their EOL preferences

• 29% have a living will (up from 12% in 1990)


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 the patient.

Kuehlmeyer et al.., 2012.

engagewithgrace.org The One Slide Project

1. On a scale of 1 to 5, where do you fall on this continuum?

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?

Can You and Your Loved Ones Answer These Questions?

1 2 3 4 5

Don't give up on me no matter what, try any proven and unproven intervention

possible

Let me die without medical intervention

Taking Action in the Office: Prognosis

Selby et al. 2011

• 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)

Taking Action in the Office: Palliative Care

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 hospital• Greater feelings of closure

Taking Action in the Office: Hospice

Taylor, 2009.

…the individual, however sick, remained a person whose voice deserved to be heard.

Millenson, 2011.

• 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 history.

• The most important aspect of end-of-life care is anticipation.

• The greatest gift we can give patient’s is the gift of time.

Conclusion

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.

Callahan, 2011.

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Health & Medicine

‘Death Panel’ Discussions in a Primary Care Setting