1. Stanley Hall, N.P. Peter Kozisek, M.D. St. Luke’s Palliative Medicine

2. What is Palliative Sedation? The use of sedating medications, with the intention of reducing a patient’s level of consciousness, titrated to relieve intolerable or refractory symptoms at the end of life

3. What is the Legal Foundation for Palliative Sedation? Vacco v. Quill, et. al., 117 S. Ct. 2293 (1997) Washington v. Glucksberg, 702 S. Ct. 521 (1997) “intent” is the guiding principle for a medical intervention at the end of life “sedation, even to the level of unconsciousness” is legally permissible if needed for intractable suffering

4. Does Palliative Sedation Shorten Life Expectancy? Barathi B, Chandra PS. Palliative Sedation in Advanced Cancer Patients: Does it Shorten Survival Time? A Systematic Review. Indian J Palliat Care 2013; 19: 40-47. No difference in mean survival times between sedated and non-sedated patients across eleven studies

5. Does Palliative Sedation Shorten Life Expectancy? Schur, et. al. BMC Palliative Care (2016) 15:50 A retrospective review (n=2414) of patients admitted to Austrian Palliative Care units. Median time to death for sedated and non-sedated patients did not differ significantly (10 vs. 9 days; p=0.491).

6. Is There A Duty To Provide Palliative Sedation? American Medical Association, Opinion 2.201, Sedation to Unconsciousness in End of Life Care The duty to relieve pain and suffering is central to the physician’s role as healer and is an obligation physicians have to their patients. It is the ethical obligation of a physician to offer palliative sedation to unconsciousness as an option for the relief of intractable symptoms.

7. Types of Palliative Sedation Proportional Palliative Sedation Respite Palliative Sedation Palliative Sedation to Unconsciousness

8. Making The Decision Communication with Patient and Family Informed Consent Communication with the Team Documentation

9. Case Study 51 year old male at the VA with history of progressive refractory thyroid cancer Tumor involvement: Right ICA/ECA, left ICA, mediastinum, lungs Likely EOL scenario was a catastrophic bleed Social: Recently married to second wife; 3 month old child. Children from first family all over 19 Despite tensions, all ultimately gathered to support patient.

10. Case Study Patient had continued to work during his treatment and disease progression. Presenting symptoms on admission were: Weight loss Pain Inflammatory Neuritic visceral Fatigue due to disease burden Exertional dyspnea

11. Case Study Patient confessed he was ‘close to losing it.’ Asked to be sedated to unconsciousness prior to ‘losing it.’ Estimated he would not be able to maintain his composure for another day.

12. Case Study Increasing doses of dilaudid Steroids for inflammatory component Scheduled ondansetron and Phenergan for nausea Patient felt that his physical symptoms, and his progressive debility, were the major contributors to his ‘wearing down.’

13. Case Study Presented case in IDT Attendings performed Chart review Physical exam, patient interview Medication review Policy review Discussion with district counsel Decision was: No. Reason: In addition to documenting the patient’s physical symptoms, I had documented ‘existential distress’

14. VA Policy There had been recent publication of “The Ethics of Palliative Sedation”, A Report by the National Ethics Committee of the Veterans Health Administration. The section of this publication pertaining to existential distress informed the decision- making process.

15. Issues surrounding existential distress and palliative sedation Distinguishing existential suffering from psychological distress “Proportionality” and relief of existential suffering. Slippery slope argument Relief of existential suffering and the goals of medicine http://www.ethics.va.gov/docs/necrpts/NEC_Report_200 60301_The_Ethics_of_Palliative_Sedation.pdf

16. After prolonged discussion, The committee agreed with and encorsed the ACP/ASIM position statement (taken from that body’s position paper on physician assisted suicide): When the patient’s suffering is interpersonal, existential, or spiritual, the tasks of the physician are to remain present, to “suffer with” the patient in compassion, and to enlist the support of clergy, social workers, family, and friends in healing the aspects of suffering that are beyond the legitimate scope of medical care.

17. So… “The Committee concludes that palliative sedation should not be used to treat existential suffering in the absence of severe, refractory clinical symptoms.”

18. Other aspects affecting decision It was felt that the patient had not received expert level palliative care to manage his symptoms prior to coming to the conclusion that palliative sedation was an acceptable alternative; There was some concern that there were insufficient staff who could manage the procedure in the CLC; There were concerns regarding whether the patient, in his current distressed state, was really making an informed decision.

19. Well, ok, but: Existential suffering is a component of most physical suffering; Its presence shouldn’t eliminate the possibility of palliative sedation for conditions which otherwise meet criteria.

20. If you meet resistance, Re-frame: Met with family, explained result. Discussed starting a benzo drip, titrating to relief of anxiety, but not necessarily to unconsciousness, while continuing pain management. Patient agreed. Lorazepam 0.5mg/hr IV was started. Patient slept for 36 hours. Downtitrated on day 2, patient stated he felt better, able to ‘persevere’

21. Points to Ponder It is a big deal to relieve someone of their consciousness at the end of their life. In order to consider palliative sedation, expert- level palliative care must have been provided at every previous step, and must have been unsatisfactory to the patient. There needs to be an institutional policy for palliative sedation; There needs to be a nursing policy and procedure for palliative sedation; There must be adequate staffing for 24/7 attendance: This is a time and labor-intensive procedure.

22. Points to Ponder Ideally, the possible need for considering palliative sedation should be considered early on, and be discussed as a care option with the patient and family.

23. The Rest of the Story: Family bonding during the unconscious interim Patient capitalized on his rested state to connect with each of his children We discussed the 5 tasks, which the family embraced and used to facilitate their bonding.

24. The Rest of the Story: The patient’s eldest daughter was at the bedside, holding his hand and talking to him when he looked surprised, and began to extravasate through his mouth. The daughter pulled him to her, and held and soothed him as he died.

25. The Rest of the Story: Later, the daughter said: “I’m so grateful for the time we had together, and that I was there when it happened. The Social worker was all worried that I would be traumatized…” “But I got to be there with him, there for him, to love him and keep him from being scared. I would not have been able to forgive myself if I hadn’t been there.”

26. Post Hoc Despite differences over how to provide terminal care, staff kept these discussions patient focused; collegial relationships were maintained and strengthened. The family felt supported, and felt that they were heard. Formal palliative sedation policy was established. Nursing policy/procedure and training was done

27. A palliative care/hospice program was initiated, using a grant; A palliative-certified physician was hired to direct the palliative care program.

28. Palliative sedation is a specialized, nuanced and fortunately rarely needed response to an overwhelming, intolerable symptom burden which has been unresponsive to previous interventions; When it is needed, it is likely the only thing which will relieve the symptom burden; It is best delivered via a well-developed protocol, by well trained staff, in the context of informed consent.

29. Questions? Comments?