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Ethics and Palliative Care at the End of Life Alan Sanders, PhD.

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Presentation on theme: "Ethics and Palliative Care at the End of Life Alan Sanders, PhD."— Presentation transcript:

1 Ethics and Palliative Care at the End of Life Alan Sanders, PhD

2 2 Persons at the “End of Life” Joanne Lynn, “Living Long in Fragile Health: The New Demographics Shape End of Life Care,” Improving End of Life Care: Why Has It Been So Difficult? Hastings Center Report Special Report 35, no. 6 (2005): S14- S18.

3 3 Ethics and Palliative Care at the End of Life Ethics Palliative Care ?

4 4 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?

5 5 “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

6 6 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

7 7 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

8 8 III – Description Palliative Care Life Prolonging Care Medicare Hospice Benefit Palliative Care Hospice

9 9 III – What is Palliative Care Palliative 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)

10 10 III – What Does Palliative Care Do? Decision-making, Goals of Care Pain and Symptom Management Psychosocial and Spiritual Support Coordination of Care

11 11 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 & Humanities Core Competencies for Health Care Ethics Consultation, 1 st Ed.

12 12 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?

13 13 IV – Palliative Care Screening

14 14 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

15 15 - Draft EMR ethics consultation tool V – Ethics Consultation

16 16 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.

17 17 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.”

18 18 End of Life, Palliative Care, and Ethics End of Life Ethics Palliative Care

19 19 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

20 20 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

21 21 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?

22 22 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?

23 23 The Family Meeting

24 24 The Family Meeting

25 25 Questions? Suggestions?

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