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Ethics at the End of Life and Introduction to Hospice and Palliative Care for Medical Students. Exploration of feeding tubes, code status, when to stop chemo. Discusses cases and the ethical …

Ethics at the End of Life and Introduction to Hospice and Palliative Care for Medical Students. Exploration of feeding tubes, code status, when to stop chemo. Discusses cases and the ethical principles and values that are the basis for disagreement in care and what to do when there is a conflict in ethical principles themselves. Also provides an introduction to decisions of last resort including physician aid in dying, palliative sedation and voluntary refusal of nutrition and hydration.

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  • Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses 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 together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
  • Palliative care is relief from the pain, symptoms and distress of serious illness. It's goal is two-fold: to ensure the highest function and quality of life possible; and to organize support for patients and families so they can achieve their goals. Palliative care is appropriate at any stage of an illness that may limit life, and can be offered alongside treatments intended to cure.

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  • 1. ETHICS AT THE END OF LIFE & INTRO TO HOSPICE AND PALLIATIVE CARE FOR MEDICAL STUDENTS IDIS 110 Ethics for Physicians- KCUMB Andi Chatburn, D.O., M.A. Fellow, Hospice and Palliative Medicine University of Kansas Medical Center & Kansas City Hospice and Palliative Care
  • 2. Objectives • Introduce the scope of Palliative Care and Hospice Care • • • • • and ways they intersect Discuss access to Hospice and Palliative Care as important and a basic human right & a social justice issue Discuss common reasons for Palliative Care Consult or Hospice referral and common “every day ethics” that arise Examine the end-of-life experience from patient perspectives, discussing implications for physicians Analyze cases where ethical principles and values conflict in serious illness and at the end of life. Discuss how humanities and self-reflection are important tools in educating whole-person physicians
  • 3. Ms. C • 88 year old woman • Admitted to hospital for combativeness, not eating • Advanced Dementia, <7 words • Not eating, losing weight • Maximally Cachectic, 87 lb • Ms. P is lifelong devout Catholic • 3 daughters, 2 sons • Widowed
  • 4. Ms. C • Has an advance directive • Section on Artificial Hydration and Nutrition (AHN) has 2 boxes to be checked: • I would want Artificial Hydration and Nutrition • I would not want Artificial Hydration and Nutrition • Neither box is checked • Default in fine print at bottom of form states that if neither box is checked, default is to give AHN • Children are split on what to do, and ALL are listed as joint DPOAs
  • 5. Mr. P • 62 yo gentleman with Advanced Multiple Myeloma • Admitted to Hospice House for pain out of control • Multiple pelvis, Lumbar spine, Femoral bony lesions • Pain Regimen • Intrathecal Pump • Fentanyl Patch • Delirium • Wife says “just make him sleep so he‟s comfortable, please” • Son says “don‟t give him any more pain medication, it‟s addicting”
  • 6. Principles and Values Beauchamp and Childress: • Autonomy • Beneficence • Nonmaleficence • Justice Others: • Ethic of care- Nel Noddings • Capabilities Approach- Martha Nussbaum • Religious, Spiritual, Cultural diversity • Re-framing of medical cultural attitudes toward death
  • 7. Palli-what? Palliare (Latin): to cloak, comfort
  • 8. Palliative Care • Who? • Anyone with a serious illness • What? • Pain and symptom relief • Psychosocial support • Goal? • Find out what matters most • Improve Quality of Life
  • 9. You„re sick. It‟s serious. http://www.geripal.org/2011/02/youre-sick-its-serious.html
  • 10. The Disease Spectrum http://www.med.umich.edu/geriatrics/patient/palliative-faq.htm
  • 11. Hospice v. Palliative Care
  • 12. Both: Interdisciplinary Team Approach • Nurses • Home Health Aids • Patient • Physicians • Family & Friends • Massage Therapists • Social Workers • Music & Art Therapists • Chaplains • Pharmacists
  • 13. Hospice Care: Medicare Benefit Certification: If your disease or combined comorbid serious illnesses take its [their] natural course, then your expected prognosis is likely to be 6 months or less. Not a sentence of 6 months but a comparison of the patient to other typical patients with similar disease stage
  • 14. ePrognosis
  • 15. That‟s great, but where? Palliative Care • Hospital Consult Team • Outpatient Clinic • Palliative Home Health • Home • Nursing Facility Hospice • Home • Nursing Home • Hospice House • Hospital Room/Wing • Outpatient Clinic
  • 16. Primary Palliative Care Communication about treatment options & pain and symptom management that happens between a patient and their regular doctor Conversation should be built in to regular visits for any patient with serious illness
  • 17. Changing medical attitudes about death • Death is NOT a failure of the physician • Death as a natural part of life • Saving living vs. saving life • Responsible medical spending and social justice • Bankruptcy is not infrequent in families of patients that have extended hospital stays in the last 3 months of life ChoosingWisely.org
  • 18. Choosing Wisely Campaign- AAHPM
  • 19. Support for Palliative Care via Choosing Wisely: Social Justice • American College of Emergency Physicians • Don‟t delay engaging available hospice and palliative care services in the emergency department for patients likely to benefit • Society of Gynecologic Oncology • Don‟t delay basic level palliative care for women with advanced or relapsed gynecologic cancer, and when appropriate, refer to specialty level palliative medicine • American Society of Clinical Oncology • Don‟t use cancer-directed therapy for solid tumor patients with … low performance status, no benefit from prior evidence-based interventions… and no strong evidence supporting the clinical value of further anti-cancer treatment. • AMDA & American Geriatrics Society • Don‟t insert PEG tubes in individuals with Advanced Dementia
  • 20. Common Reasons for Specialty Palliative Care Consult Symptoms Goals of Care • Uncontrolled pain • Family communication • Nausea • Guidance with complex • Constipation • Dyspnea • Fatigue • Loss of appetite • Depression • Agitation/Delirium treatment choices • Feeding Tube? • Code Status? • Surgical Intervention? • When to stop dialysis? • Emotional and Spiritual Support
  • 21. WHICH ETHICAL PRINCIPLES AND VALUES APPLY? Break out into discussion groups of 4-6
  • 22. Common Reasons for Specialty Palliative Care Consult Symptoms Goals of Care • Uncontrolled pain • Family communication • Nausea • Guidance with complex • Constipation • Dyspnea • Fatigue • Loss of appetite • Depression • Agitation/Delirium treatment choices • Feeding Tube? • Code Status? • Surgical Intervention? • When to stop dialysis? • Emotional and Spiritual Support
  • 23. Ethics of Pain Control • Stigma of addiction v. pseudo addiction • Side effect of somnolence • Potential for high dose opiates at end of life • High risk • Potential for diversion of medications • Doctrine of Double Effect • Shortens life span? Does it matter?
  • 24. Most Common Ethical Dilemmas • Withholding and Withdrawing medical interventions • Code Status and Unilateral DNAR • Artificial Hydration & Nutrition • Turning off ICD or much less commonly, pacemaker • When to stop chemo/XRT? • Mechanical Ventilation • What about when patient or family and medical teams disagree? • Religious preferences at end of life • Non-Beneficial or Futile medical interventions
  • 25. Who decides? • Surrogate decision making • What about the “unbefriended/unrepresented” patient? • When ought a guardian be appointed? • Medical Paternalism v. Autonomy in unilateral decisions
  • 26. CASE 1
  • 27. Ms. C • 88 year old woman • Admitted for combativeness, not eating • Advanced Dementia, <7 words • Not eating, losing weight • Maximally Cachectic, 87 lb • Ms. P is lifelong devout Catholic • 3 daughters, 2 sons • Widowed
  • 28. Ms. C • Has an advance directive • Section on Artificial Hydration and Nutrition (AHN) has 2 boxes to be checked: • I would want Artificial Hydration and Nutrition • I would not want Artificial Hydration and Nutrition • Neither box is checked • Default in fine print at bottom of form states that if neither box is checked, default is to give AHN • Children are split on what to do, and ALL are listed as joint DPOAs
  • 29. Should a Feeding Tube be Placed? • Would this be Ms. P‟s most likely desire? • Withholding vs. Withdrawing • Who decides? • Advance Directive and Durable Power of Attorney • Would Tube Feeds be in Ms. P‟s best interest? • Non-maleficence vs. Beneficence • What would the family hope to gain?
  • 30. CASE 2
  • 31. Mr. P • 62 yo gentleman with Advanced Multiple Myeloma • Admitted to Hospice House for pain out of control • Multiple pelvis, Lumbar spine, Femoral bony lesions • Pain Regimen • Intrathecal Pump • Fentanyl Patch • Delirium • Wife says “just make him sleep so he‟s comfortable, please” • Son says “don‟t give him any more pain medication, it‟s addicting”
  • 32. Doctrine of Double Effect • Mr. P • Increasing Pain • Increasing doses of opiates, benzodiazepines • Delirium complicating clinical picture • Doctrine of Double Effect • Opiates may shorten life span • If using appropriately to treat pain, this is an acceptable side effect • Proportionality • Pain medication doses should be proportional to the pain present
  • 33. Mr. P Continued… • Palliative Sedation • Indication: pain and symptoms not able to be controlled even with quality palliative care (aggressive pain and symptom management) • Sedation for pain and symptoms seen by most physicians as different from elective sedation to death • Methods • Intermittent sedation with daily sedation vacations vs. • Continuous sedation until death • Doctrine of Double Effect • Unable to eat if sedated
  • 34. Responding to Intractable Terminal Suffering Quill and Byock Letter to the editor, Sulmasy et al. • Terminal (Palliative) Sedation and • Mistaken and dangerous voluntary refusal of hydration and nutrition ought to be more commonly considered options • Ought to be considered for all types of suffering, not only physical pain and symptoms • Physicians should make sure the request is not coming from pt having undiagnosed depression or symptoms that can be treated with palliative measures. impression that there is consensus among experts • Agree that could be appropriate therapy when performed in carefully selected cases by palliative care specialist • Disagree that there is a wider range of indications for terminal sedation. • Unclear what sorts of suffering might be an indication for terminal sedation. Sulmasy, Ury ,Ahronheim, Siegler, Kass, Lantos, Burt, Foley, Quill TE, Byock IR. Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. Ann Intern Med. 2000; 132: 408-414. Payne, Gomez, Krizek, Pellegrino, Portenoy. Letters to the editor responding to Quill and Byock. Ann Intern Med. 2000; 133(7): 560562
  • 35. Personhood, Suffering and Meaning “In terminally ill persons, requests for physicianassisted death are infrequently triggered by unrelieved pain alone but more commonly result from a combination of physical symptoms and debility, weakness, lack of meaning, and weariness of dying… [s]uffering can arise from a sense of impending disintegration of one’s person or a loss of meaning that may have little to do with uncontrolled physical symptoms” – Quill & Byock
  • 36. Quill and Byock “Medicine cannot sanitize dying or provide perfect solutions for all clinical dilemmas. When unacceptable suffering persists despite standard palliative measures, terminal sedation and voluntary refusal of food and fluids are imperfect but useful last-resort options that can be openly pursued.”
  • 37. Controversy at End of Life • Palliative Sedation • Voluntary cessation of food/water intake • Physician Aid in Dying • Oregon 1998 • Washington 2008 • Vermont May 2013 • Montana- 2009. (Baxter v. Montana) • Physician right to challenge charge if prosecuted for prescribing a medication intended for physician aid in dying • Euthanasia • Netherlands, Switzerland
  • 38. SELF CARE
  • 39. Self Care When you do the physically and emotionally hard work of doctoring, no matter which specialty, it is important to find something that nourishes your soul