Ethics and Palliative Care at the End of Life

Alan Sanders, PhD

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Persons at the “End of Life”

Joanne Lynn, “Living Long in Fragile Health: The New DemographicsShape End of Life Care,” Improving End of Life Care: Why Has It Been SoDifficult? Hastings Center Report Special Report 35, no. 6 (2005): S14-S18.

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Ethics and Palliative Care at the End of Life

?

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• Family will not agree to a DNR for an actively dying, and terminally ill, patient

• A wife of a 50-year-old father with advanced ALS is concerned about his increasing admissions to the hospital, wondering if she should sign a do-not-hospitalize (DNH) order

• A family of an elderly woman with advanced dementia, frailty, and COPD are holding out hopes (against prevailing medical opinion) that her current hospitalization and ventilation will get her back to her SNF

• A family of an elderly woman with moderate dementia, COPD, and heart issues wonder how much longer she can live alone

Ethics or Palliative Care?

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• “Palliative care is the embodiment of ethics at the end of life.” – Mission executive

• “Palliative care handles end-of-life and goals of care, ethics assists when there is unresolved conflict.” – Palliative care practitioner

• “Ethics concerns goals of care, palliative care matches treatment plans to those goals.” – Ethicist

• “Western medicine tends to turn care modalities into a clinical specialty when they find a way to bill for services.” – Alternative medicine specialist

I - Anecdotal

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• Dowdy, Robertson, Bander. “A Study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stay.” – Critical Care Medicine 26(2): 1998

• Schneiderman, Gilmar, Teetzel. “Impact of ethics consultations in the intensive care setting: A randomized, controlled trial”– Critical Care Medicine,28(12): 2000.

• Schneiderman et al. “Effect of Ethics consultations on Nonbeneficial Life-Sustaining Treatments in the Intensive Care Setting.” – JAMA, 290 (9): 2003.

II – Literature – Not exhaustive

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• Campbell and Guzman, "Impact of a Proactive Approach to Improve End-of-Life Care in a Medical ICU," – CHEST, 123: 2003.

• M Aulisio, E Chaitin, and R. Arnold, "Ethics and Palliative Care Consultation in the Intensive Care Unit.," – Critical Care Clinics 20 (2004): 502-23.

• Norton, et al. “Proactive palliative care in the medical intensive care unit: effects on length of stay for selected high-risk patients.” – Critical Care Medicine, 35(6): 2007.

II – Literature – Not exhaustive

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III – Description Palliative Care

Life Prolonging CareLife Prolonging CareMedicare Medicare Hospice Hospice BenefitBenefit

PalliativeCare

Hospice

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III – What is Palliative CarePalliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment. - Diane Meier (public survey and analysis)

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III – What Does Palliative Care Do?

• Decision-making, Goals of Care• Pain and Symptom Management• Psychosocial and Spiritual Support• Coordination of Care

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III – What is Ethics consultation?

• Health care ethics consultation is a service provided by an individual or a group to help patients, families, surrogates, health care providers, or other involved parties address uncertainty or conflict regarding value-laden issues that emerge in health care.

- American Society for Bioethics & HumanitiesCore Competencies for Health Care Ethics Consultation, 1st Ed.

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• Gather relevant data (e.g. through discussions with involved parties, examinations of medical records or other relevant documents)

• Clarify relevant concepts (e.g. best interest, patient autonomy, informed consent)

• Clarify related normative issues (e.g. personal and societal values, policy, norms)

• Help identify a range of morally acceptable options within the context.– ASBH core competencies

III – What does Ethics process accomplish?

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IV – Palliative Care Screening

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• Patients for whom the goals of treatment are unstated, unclear or unrealistic.

• Patients for whom there is conflict over the goals of treatment or treatment options.

• Request for withdraw of life-sustaining treatment absent end-stage disease and/or reasonable expectation of recovery

• A resource utilization outlier- Heyl, “Early Indicators for Ethics Reviews.” HCAUSA, 2008.

• Example

IV – Ethics Screening

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- Draft EMR ethics consultation tool

V – Ethics Consultation

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V – Palliative Care Consultation

• Strand, Kamdar, and Carey. “Top 10 Things Palliative Care Clinicians Wished Everyone Knew About Palliative Care.” Mayo Clinic Proceedings, 88 (8), 2013.

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Related - ERD 57

• “A person may forgo extraordinary or disproportionate means of preserving life. Disproportionate means are those that in the patient's judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community.”

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End of Life, Palliative Care, and Ethics

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• Ethics– Committee– Team– Consultant(s)– FTE dedication

• 0.1 FTE – 1.0 FTE

• Palliative Care– In-house program

• Primary palliative care only• No FTE dedication

– Contract• Hospice agency• Hospice & Palliative care

agency

– Employed model• FTE dedication

Moving Forward – Services & Resources

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• Palliative care– Goals of care (Whose goals?)

• Bias towards Hospice?• Conflict of interest for contracted – primarily hospice

services

– All things “end-of-life” (burnout)

• Ethics committee–services– Bias towards conflict and/or conflicting

principles?– The “end-of-life” committee?

Awareness of Risks

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• Identifying vulnerabilities– Inappropriate/unnecessary LOS– Uncertainty and/or conflict– Overlooked pain and symptoms– Uncoordinated care– Moral distress– Lack of understanding condition/prognosis

What can be accomplished? How?

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• Palliative care services is not enough, even if in-house, fully dedicated FTE’s

• Screening Committees/Rounds• Multidisciplinary Rounds• Education• Policy• Family meetings and Goals of care discussions

What can be accomplished? How?

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The Family Meeting

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The Family Meeting

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Questions? Suggestions?