Rocky Mountain Oncology Society Symposium: Medical Aid-in-Dying

Transcription

1 Rocky Mountain Oncology Society Symposium: Medical Aid-in-Dying November 9 th, 2017 James G Willett, MD MBE Colorado Permanente Medical Group Palliative Care Medical Director KPCO Ethics James.G.Willett@kp.org

2 Disclosures: This presentation does NOT represent Compassion & Choices. The content and opinions in this presentation are my own and do not in any way reflect those of Colorado Permanente Medical Group or Kaiser Permanente.

3 Learning Objectives: 1. To define Medical Aid-in-Dying (MAID) and review where it is Legal. 2. To review Oregon s Experience with Assisted Death ( ). 3. To review Colorado s End-of-Life Options Act, patient eligibility, and qualification steps for MAID. 4. To briefly discuss Ethical and Practical Challenges with Medical Aid-in-Dying. 5. To learn: how to respond to a patient s request for MAID, and... where to turn for help. 6. To realize most patient inquiries into assisted death are invitations to discuss what is important in how they wish to live.

4 Question Raise your hand if, in your clinical practice, you have had a patient inquire about Medical Aid-in-Dying since the CO End-of-Life Options Act (formerly Prop 106) was signed into law.

5 Definition of Medical Aid-in-Dying (MAID) Medical Aid-in-Dying (MAID), or Physician Aid-in-Dying (PAD), refers to the practice in which a physician provides a terminally ill patient, with decision-making capacity, a prescription for a lethal dose of medication, upon the patient s request, which the patient may self-administer to end his or her own life.

6 Medical Aid-in-Dying is NOT WHAT Euthanasia Palliative Sedation Death as consequence of adequate pain control Refusal / Withdrawal of lifesustaining treatment DISTINCTION Direct administration of agent Terminal sedation to address refractory suffering Double effect Decision of patient or health care surrogate Allow natural death

7 United States Where MAID is Legal: Oregon Washington (2008) California (June, 2016) Vermont (2013) Montana (court ruling only, 2009) Colorado (12/2016) Washington DC * (2017)

8 Countries Where MAID and/or Euthanasia is Legal: USA Canada Colombia Netherlands Belgium Luxembourg Switzerland Germany Japan

9 Oregon DWDA Prescription Recipients & Deaths*, by Year, Last 10 Years * As of January 23, Axis Title DWDA Deaths DWDA Prescription Recipients

10 Oregon Death with Dignity Act Data Total DWDA Prescriptions & Deaths Since DWDA Prescriptions DWDA Deaths In 2016, 102 Physicians Wrote 204 Prescriptions A Few Observations During 2016, the rate of DWDA deaths was 37.2 per 10,000 total deaths, or %. Meaning, compared to all deaths, the proportion of patients who utilize and die by MAID as an End-of-Life Option is EXTREMELY SMALL.

11 Which Patients Are Asking? Oregon Death with Dignity Act 2016 Report Underlying Illness Cancer Hospice Enrollment ALS 7% 7% 1%6% 79% Heart Disease 11% 89% Enrolled in Hospice Not Enrolled in Hospice Chronic lower Respiratory Disease

12 Question: True or False, Most Patients Pursue Medical Aid-in-Dying Because They Fear Pain or Uncontrolled Symptoms?

13 And Why? Oregon Death with Dignity Act 2016 Report 2016 DWDA Patient Stats: 80.5% Age 65 and or older, Median Age at Death = % White 88.6% Died at Home 50% Well- Educated 5 Patients (3.8%) Referred to Mental Health Loss of Autonomy Decreasing Ability to Participate in Activities that Make Life Enjoyable Loss of Dignity Burden on Family, Friend/Caregivers Losing Control of Bodily Functions Inadequate Pain Control or Concern About It Financial Implications of Treatment 0.00%10.00% 20.00% 30.00% 40.00% 50.00% 60.00% 70.00% 80.00% 90.00% % Percentage (as Decimel)

14 California s EOL Option Act 2016 Data Report, from June 9th 2016 to December 31 st, Prescriptions Written by 173 Physicians 111 Patients Died following Medication Ingestion 87.4% were > age % had health insurance 89% were White 83.8% were receiving palliative care and/or hospice 58.6% were cancer patients 18% were neuromuscular disease patients (ALS, Parkinson s) 8.1% were heart disease patients

15 Example of A Medical Aid-in-Dying (MAID) Regimen Anti-Emetic Pre-Medication: Metoclopramide 20 mg + Ondansetron ODT 8 mg Administer 60 min PRIOR to ingestion of lethal drug May have addition of benzodiazepine if taken chronically Lethal Drug: Secobarbital (Seconal) # mg capsules (9000 mg) Barbiturate / CNS depressant Mixed into slurry with 120 ml of ETOH or water, PO or G/J Other regimens have been used but have less data

16 Example of A Medical Aid-in-Dying (MAID) Regimen Minutes Between Ingestion and Death (Oregon s DWDA 2016 Data): Median 27 minutes Range 7 min 9 hours (* However up to 104 hours in prior years) % Patients who regained consciousness after MAID ingestion (Oregon s DWDA 2016 Data) was ZERO (though total of 6 cases in prior years); 3 of 133 patients had difficulty with ingestion/regurgitation Cash Price is ~ $ $4000 for all drugs including Secobarbital NOT covered by Medicare, Medicaid, (federally funded dollars), and some self-funded plans

17 Colorado End-of-Life Options Act: CRS Article 48 Proposition 106 passed as Ballot Initiative in Nov by nearly 2:1 margin, 65% Y, 35% N ELO Immediately Active Dec. 16 th, 2016 when signed into law by Governor Hickenlooper, with Emergency Rules Adopted by CDPHE Jan Ethical Question Should CO health systems support Patients ELO Requests or Opt Out? KPCO Policy and ELO Program Active Feb thanks to help from KP NW, NCAL, SCAL Provider Participation is VOLUNTARY

18 Colorado End-of-Life Options Act: Eligibility Law permits a decisional, terminally ill adult to self-administer physician-prescribed lethal medication if certain conditions are met Must be 18 years of age or older Legal resident of Colorado Thought medically capable to make an informed decision on aid-in-dying (according to 2 physicians +/- Mental Health Professional if either in doubt) Diagnosis of terminal illness with prognosis thought less than 6 months (according to 2 physicians) Voluntary request Ability to self-administer aid-in-dying medication

19 Colorado End-of-Life Options Act: Law requires multiple Qualification process steps: Patient must make 2 oral requests separated by at least 15 days to the attending/prescribing (AP) physician. Patient must make 1 written request, signed and witnessed, and received by the attending/prescribing physician. Attending/Prescribing physician must examine patient and document terminal illness / prognosis < 6 months, patient s mental capacity, and that aid-in-dying request is a voluntary, informed decision. Discussion of alternative options with recommendation of palliative care +/- hospice referral, and option to rescind MAID request, as well as option to obtain MAID prescription but choose not to use it. A Consulting physician must then see and examine the patient and document corroboration with terminal illness / prognosis, decisional capacity re: voluntary, informed decision. Referral to Mental Health Profession if/when Attending/Prescribing and/or Consulting physicians doubt patient s capacity for decision-making. Attending/Prescribing Physician Reporting Form and Pharmacy Dispensing Record must be completed and submitted to CDPHE within 30 days of writing the prescription.

20 Helpful Link to Attending/Prescribing Form:

21 A Few Legal Points WAIVER OF PROVIDER LIABILITY FOR GOOD FAITH COMPLIANCE. ATTENDING PHYSICIAN MEANS A PHYSICIAN WHO HAS PRIMARY RESPONSIBILITY FOR THE CARE OF A TERMINALLY ILL INDIVIDUAL AND THE TREATMENT Of THE INDIVIDUAL S TERMINAL ILLNESS. ATTENDING PHYSICIAN IS BY DEFINITION THE PRESCRIBING PHYSICIAN.

22 A Few Legal Points ATTENDING PHYSICIAN COMPLETES DEATH CERTIFICATE WITH CAUSE OF DEATH LISTED AS THE TERMINAL ILLNESS. MAID IS NOT DEFINED AS SUICIDE UNDER THE CO ELO LAW, AND AS SUCH IT DOES NOT AFFECT LIFE INSURANCE CLAIMS. (1)A HEALTH CARE FACILITY MAY PROHIBIT A PHYSICIAN EMPLOYED OR UNDER CONTRACT FROM WRITING A PRESCRIPTION FOR MEDICAL AID-IN-DYING MEDICATION FOR A QUALIFIED INDIVIDUAL WHO INTENDS TO USE THE MEDICAL AID-IN-DYING MEDICATION ON THE FACILITY S PREMISES.

23 Media Statement from Kaiser Permanente Updated 2/28/17 Kaiser Permanente has successfully implemented similar laws in Oregon, Washington, and California, and we are confident we will be able to do so in Colorado as well. We are guided by our commitment to support the physical, emotional, and spiritual health of each patient at the end of life as well as our commitment to complying with the law s requirements. We realize there are strong emotions and opinions around medical aid-in-dying. Provider participation is optional and we will support all physicians and providers whether they decide to opt in or opt out of medical aid-in-dying."

24 Questions: Can a patient incapacitated by dementia or brain metastases, qualify for MAID? If a patient surprises you in clinic with a request for MAID, does that request count as the first oral request? Can an attending/prescribing physician back-date the patient s first oral request for Medical Aid-in-Dying (referencing the request was received previously by another provider not willing to participate)? How do we determine prognosis of 6 months or less? Does this depend on whether or not patient is still receiving cancer-directed therapy?

25 Pause for Questions? Next is ETHICS

26 Question TRUE OR FALSE: If every patient were able to receive optimal palliative medicine and/or hospice support at the end of their lives, there would no longer be requests for Medical-Aid-in-Dying (MAID)?

27 Reflections on Ethical Arguments re: MAID PRO: Respect for patient autonomy and the primacy of patient s values Non-Abandonment Mercy / Beneficence Relief of Suffering not always met by alternatives of palliative sedation, VSED, optimal hospice care, etc. Unjustified Paternalism (to oppose) The concept of injustice of fate in terminal illness. Not all able to refuse / withhold a life-sustaining intervention CON: Do-No-Harm Harm to Professional Integrity? De-valuation of Life and the Disabled? Mistrust Incentivizing a duty to die? Universal Access to Specialty Palliative Care and Hospice = A larger problem? Slippery Slope Concerns Concerns for Error and Abuse, Safety, Compliance, and Tracking Psychiatric Concerns in assessing capacity or untreated mood disorders

28 Public and Provider Attitudes on MAID Public Support FOR Physician-Assisted Death in the USA is ~ 69%¹ Physician Support for Physician-Assisted Suicide in the USA appears somewhat lower, ~ 54%¹ American Palliative and Hospice Health Care Provider support for MAID appears close to evenly split. 1 Emanuel E, et al. Attitudes and Practices of Euthanasia and Physician Assisted Suicide in the United States, Canada, and Europe. JAMA. 2016: 316(1):

29 Greatest Practical Challenge? Coloradans Limited Access to MAID Presently Opting In? KPCO University of Colorado Private Practices Denver Health MC? * Presently Opting Out? Most Hospice Agencies > 30 Colorado Hospitals + Catholic Health Systems Sisters of Charity of Leavenworth (SCL) * OK to respond to requests by discussing MAID and refer to outside providers to explore requests. No onsite participation in ELO qualification steps. Centura Health Banner Health

30 How Has Coloradans Limited Access to Medical Aid-in-Dying Shaped the Moral Terrain? Heightened Moral URGENCY for Patients AND Providers Patient + Organizational Challenges in Identifying Physicians Willing to Participate Highlights Need for Ongoing Education, Tracking, and Resourcing Greater Emphasis on Patient Non-Abandonment, and The Perceived Rule of Rescue for Providers Willing to Participate Colorado healthcare organizations and individual physicians willing to participate may naturally receive disproportionate # of ELO Referrals Professional Integrity Concerns for Specialty Palliative Care and Hospice As External Hospice Partners have mostly opted out of participating, Palliative Care Physicians may receive more referrals to BOTH explore aid-in-dying requests AND serve as Prescribing or Consulting Physicians

31 De Lima, L, et al. International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide. Journal of Palliative Medicine, 2017; Vol 20 (1). ELO s Relationship to Palliative Care + Hospice? Separate & distinct. HPM aims to relieve suffering without hastening death. American Academy of Hospice and Palliative Medicine (AAHPM) takes the position of studied neutrality on the subject of whether PAD should be legally permitted or prohibited. However, as a matter of social policy, the Academy has concerns about a shift to include physician-assisted dying in routine medical practice, including palliative care. June, 2016 International Association for Hospice and Palliative Care believes that no country or state should consider the legalization of euthanasia or physicianassisted suicide until it ensures universal access to palliative care services and to appropriate medications, including opioids for pain and dyspnea. 2016

32 Access Remains a Shared Challenge in CA Harman S, Magnus D. Early Experience with The California End of Life Option Act: Balancing Institutional Participation and Physician Conscientious Objection. JAMA. May 22, Our early experiences with California s End of Life Option Act have uncovered multiple challenges with formal implementation, particularly the challenge of reconciling an institutional commitment to participate with the legal and ethical requirement that participation by individual physicians is voluntary. Although Stanford committed to the referral of established patients to a physician willing to prescribe, the details of finding an alternate prescribing physician remain complicated owing to the perceived stigma of that role and the challenge of establishing care and prescribing for a patient of a colleague

33 Other Ongoing Challenges for MAID Partnership with Palliative Medicine & Hospice Uncertainties in Prognostication / Eligibility Collaboration with Out-of-Network, or Outside Providers Collaboration with Consulting and Dispensing Pharmacists $$$ MAID Medication Costs, Requests for Alternative Regimens, Safe Disposal Mental Health Consultation Process (when needed) Resourcing/Staffing, Metrics/Tracking, & Role of CDPHE Ongoing Education Properly Reporting a Death / Visibility of Advance Directives Need for Provider AND Family/Caregiver Debriefing & Moral Support

34 How Can Those Who Live in the Light of Day Possibly Comprehend the Depths of Night? - Friedrich Nietzsche Hear the Wind Sing by novelist, Haruki Murakami

35 Case: Lenore Lenore is a 78 yo retired RN known to you for past several years. Dx > 2 yrs ago with Stage IV Ovarian Cancer, now progressed s/p multiple lines of chemotherapy with peritoneal carcinomatosis + ascites contributing to progressive weakness/fatigue and decreased PO intake a/w malignant ileus. Now WC-bound and incontinent. She tells you in clinic that her qualify of life is no longer acceptable to her. She s no longer able to enjoy spending time with her daughter & grandchildren. I don t want to go on another few months like this, and I ve seen what can happen. I m afraid.

36 Case: Lenore She then says I voted for the Colorado End-of-Life Option. I ve talked things over with my family and they support my decision. Would you please give me the medication to help me die? How would YOU respond?

37 How to Respond to MAID Inquiries Resist the Impulse of Making Defensive Statements, or of Knee-Jerk Referral to begin ELO Patient Qualification Process EXPLORE the Request Tell me more I would be glad to discuss this with you. It would help me to know, why do you ask? What are hoping for? What are you most worried about? How do the patient s concerns relate to her understanding of terminal illness? Past experiences with death and dying? What physical, psychological, spiritual, or social issues may be influencing the request?

38 Examples of Medical Aid-in-Dying Request Statements that Should Trigger Further Exploration and Education I m worried that without MAID I will die a horrible death. I don t want to die in pain. What other choice is there!? I want to be at home; I don t want to die in some care center. I just don t want to be a burden. I m afraid to talk to my family about all this. I can t afford hospice Ain t nobody got time for that!

39 How to Respond to MAID Inquiries Provide Education to correct any misunderstandings/misperceptions Invite Discussion of Alternative End-of-Life Options Strongly Recommend Palliative Care +/- Hospice Referral. This step is recommended regardless of whether Palliative/Hospice physicians are participating in MAID Qualification Process as the Attending/Prescribing or Consultant Physician. Individual Moral Reflection on participating in MAID. It s OK to share with patients your thoughts including uncertainties. You do not have to decide in-the-moment on serving in an ELO attending/prescribing or consulting physician role.

40 Where to Turn for Help with MAID Inquiries Find Care Tool, Doc2Doc and Pharmacy Help Lines For Kaiser Patients, it s OK to call the KPCO ELO Patient Coordinator directly for assistance

41 An Aid-in-Dying Inquiry Is Often A Request for a Conversation Of Those Who Inquire: Of Those Who Receive a Prescription: ~50% want information only ~50% will enter the process to obtain a prescription ~ 60% Ingest the Medication ~ 40% Will NOT Ingest the Medication

42 Another Visual Representation # of Patient Inquiries re: MAID # of 1 st Apts w Attending/Prescribing Physician # of Consultant Apts Potentially as many patients die before obtaining MAID as # of Ingestion-related deaths # 2 nd Apt w AP # Mental Health Assessments # Rx Written # Ingestions

43 MAID Pearls: A patient s Aid-in-Dying Inquiry is NOT always a request to start the ELO / MAID Qualification Process. A patient s Aid-in-Dying Inquiry has Its Own Differential Diagnosis. - A Palliative Care Physician Colleague Only a fraction (<20%) of patients who Inquire about Medical Aid-in- Dying Obtain Receive a Prescription AND Ingest the Medication. And simply having the medication but not using it may be a comfort.

44 Case: Lenore I m just having more bad days then good ones, it s not worth it anymore. I don t want to linger. I ve seen my cancer patients suffer from terrible complications like bowel obstructions and perforations. I know that hospice can help manage those symptoms, and I ve decided I do want hospice help at home. All the same, I would like to have the option of taking medications to end my life sooner, even if I choose not to use them. Would you please help me?

45 For Physicians in the room, please simply reflect on which of the following responses best aligns with your personal and professional attitude toward Medical Aid-in-Dying (MAID): 1) I am willing to evaluate my patients for aid-in-dying and will prescribe lethal medication when permitted by law and consistent with my professional judgment. 2) I am willing to act as a consulting physician, providing a second opinion for patients initially found to qualify for medical aid-indying, but I am not willing to prescribe lethal medication. 3) I prefer to refer my patients to other physicians for evaluation of medical aid-in-dying; I am not willing to prescribe lethal medication, nor act as a consulting physician. 4) I do not wish to participate in this process at all.

46 Final Question: If So Few Patients Die from Medical Aid-in-Dying Compared to, Say, All Patients Who Die of Cancer, Why Is Being Knowledgeable about MAID Important? Because How We Respond to ELO Requests = How We Value Patient-Centered End-of-Life Care An ELO Request = A Patient/Family in Need For human beings, life is meaningful because it is a story And in stories, endings matter. - Atul Gawande, Being Mortal

47 Learning Objectives: 1. To define Medical Aid-in-Dying (MAID) and review where it is Legal. 2. To review Oregon s Experience with Assisted Death ( ). 3. To review Colorado s End-of-Life Options Act, patient eligibility, and qualification steps for MAID. 4. To briefly discuss Ethical and Practical Challenges with Medical Aid-in-Dying. 5. To learn: how to respond to a patient s request for MAID, and... where to turn for help. 6. To realize most patient inquiries into assisted death are invitations to discuss what is important in how they wish to live.

48 Your Questions & Feedback?

49 Acknowledgements: Dr Scott Kono, RMOS President-Elect, CPMG Medical Oncology Dr Andrew Robinson, CPMG Palliative Care Dr Alex Menter, CPMG Oncology Dr Daniel Johnson, CPMG Palliative Care & Med Dir Supportive Care Solutions Lea Price, KPCO Pharm D Jennifer Stamps, RN & Marge Strawn RN, KPCO End of Life Option Patient Coordinators, and the Entire KPCO End of Life Option Task Force & Clinical Operations Team KPCO Bioethics Committee KPNW, Megan Murray, MPH, ELO Program Patient Advocate KPNCAL ELO Program, Dr Ruma Kumar, Christine Chu, Melissa B Stern, Ann Gordon KPSCAL ELO Program, Stephen G Lee Jennifer Ballentine, The Iris Project

50 References: Block SD, Billings JA. Patient requests to hasten death: evaluation and management in terminal care. Arch Intern Med. 1994;154: De Lima, L, et al. International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide. Journal of Palliative Medicine, Vol 20 (1). Emanuel E et al. Attitudes and Practices of Euthanasia and Physician Assisted Suicide in the United States, Canada, and Europe. JAMA. 2016: 316(1): Frye, J, & Younger, SJ, A Call for a Patient-Centered Response to Legalized Assisted Dying. Annals of Internal Med. 2016; Vol 165 (10): Gawande, Atul. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books, Henry Holt and Company Harman S, Magnus D. Early Experience with The California End of Life Option Act: Balancing Institutional Participation and Physician Conscientious Objection. JAMA. May 22, Quill, TE, & Battin, MP (Eds) Physician-assisted dying: The case for palliative care and patient choice Baltimore: Johns Hopkins University Press. Quill TE, Cassel CK. Professional organizations position statements on physician-assisted suicide: a case for studied neutrality. Ann Internal Med. 2003; 138: