Voluntarily Stopping Eating and Drinking (VSED): A Peaceful Option for Hastening Death

1. Medical Aid in Dying Should be a Last Resort Option for the Dying Global Bioethics International International Bioethics Summer School July 16, 2019 David C. Leven, JD Executive Director Emeritus and Senior Consultant, End of Life Choices New York

2. World Mortality Rate 100% 100% 100% 100%

4. How People Die Today About 90% of Americans now die from chronic, progressive, incurable diseases. People live longer now but not necessarily better. • Many chronically ill, seriously ill and terminally ill patients have, among other things:

5. How People Die Today • Poorly controlled symptoms, particularly pain. • Psychiatric disorders and psychosocial and spiritual distress. • Concrete needs in the home. • Challenges in care coordination, communication, decision making, goal setting.

6. Voluntarily Stopping Eating and Drinking (VSED) What is VSED? • VSED is a decision made by a competent adult to stop further intake of food and fluids with the goal of hastening her/his death. It is an intentional and voluntary (non-coerced) choice to hasten death by a decisionally capable person who suffers intolerably from an incurable and progressive, or terminal illness.

7. VSED • VSED is distinguished from the usual diminished appetite often experienced by persons close to death in that it is a conscious decision to speed the dying process. It has been a traditional means of dying in the home for generations and is often thought of as a ‘natural’ way of dying. • While it is rarely a suffering person’s ‘first choice’ to hasten death, it often is the only legal means available to patient-controlled dying.

8. VSED What is the definition of a successful VSED death? • A successful VSED ‘outcome’ is understood as a peaceful death that occurs with a minimum of discomfort and occurs within a predictable period of days or weeks following the start of the fast. • The cause of death is dehydration, not starvation. • VSED appears to be legally available in all states.

9. VSED • Necessary ‘ingredients’ for a successful VSED death • 1. A decisionally capable, suffering person who is VERY determined to hasten death by fasting. The person must understand the process, know what to expect, and have concluded that the burdens of living consistently out-weigh all benefits.

10. VSED • 2. The person must have both social and care-giving support. Social support means having a caring presence provided by family members or close friends who will journey along with the person through-out the fast. • They should understand the person’s reasons for making this decision, be able to provide support for the choice, and remain present to the person as they slowly slip away.

11. VSED • Care-giving support will become necessary as the person weakens and is unable to safely get out of bed or ambulate. They will need to be kept clean, dry and comfortable in bed. VSED cannot be successfully accomplished by a person who is ‘alone’. • 3. The person must have access to home hospice or palliative medical oversight. If the person is terminally ill, arranging for hospice support for this choice is not difficult.

12. VSED • Access to palliative medical oversight is necessary because the person may need access to small doses of pain medications or anti-anxiety meds to facilitate a ‘sleepy’ state. • In addition, as death nears, some persons become agitated or suffer from hallucinations; sedating medication must be available and provided promptly. The hospice physician will sign the death certificate.

13. VSED • 4. The fourth ‘ingredient’ is the need for patience. It can be difficult to predict exactly the duration of the fast before death occurs. This can be a difficult time for families and patients who must endure the wait. And yet, because each death is unique, death will occur as it was meant to.

14. VSED Clinical challenges to a peaceful VSED death • For persons who are terminally ill, forgoing food is usually not difficult as often their appetite has significantly diminished due to their disease. However, forgoing fluids CAN be very challenging. With good oral care that includes rinsing the mouth with cool water and then spitting it out, the mucus membranes in the mouth can be kept moist.

15. VSED • Other simple measures like regularly brushing the teeth, using mouth swabs, spraying a fine mist on the back of the throat, and other interventions can keep most people feeling comfortable. • If small sips of water are consumed, the process of dying may be somewhat lengthened – but the goal is always to achieve a peaceful dying process. • In addition, small doses of opiates and/or anti-anxiety medications can facilitate a ‘sleepy’ state and lessen the focus on drinking.

16. VSED • The average length of the fast for those who are terminally ill is about 10 days, sometimes less and sometimes up to 14 days, depending upon the extent of the under-lying disease and their physical condition. • In order to achieve that time goal, consumption of fluids must be stopped. • Often the patient will lose consciousness several days before death occurs.

17. VSED • Often their days are taken up by physician or other clinical appointments and they are unable to do things that previously brought them joy. • And for some, their ability to plan and make thoughtful decisions may be slipping as well. The issue of cognitive impairment or an early stage of dementia raises significant additional challenges.

18. Palliative Sedation • Palliative sedation (PS), as defined in this statement, is the intentional lowering of awareness towards, and including, unconsciousness for patients with severe and refractory symptoms. • American Academy of Hospice and Palliative Medicine Statement 2014

19. Palliative Sedation Basic criteria for choosing palliative sedation: • Presence of a terminal illness with a refractory symptom(s) • A do-not-resuscitate (DNR) order • Exhaustion of all palliative treatments, including treatment for depression, anxiety, delirium, and familial discord • Consideration of ethical and psychiatric consultations

20. Palliative Sedation • Consideration of assessment for spiritual issues by a skilled clinician or clergy member • Discussion regarding the continuance of nutritional support or intravenous or subcutaneous hydration in patients receiving such treatments • Obtaining informed consent • Consideration of a trial of respite sedation in selected cases Stanford School of Medicine

21. Palliative Sedation Position Statements Addressing PST • American Academy of Hospice and Palliative Medicine • Hospice/Palliative Nurses Association • American Medical Association • National Hospice and Palliative Care Organization

22. Medical Aid in Dying • Life is precious, but it ends eventually for all of us, including about 2.5 million Americans and 150,000 New Yorkers each year. • No dying person should have to endure more suffering than he or she is willing to endure. • Every dying person who is mentally competent should have the right to die, if possible, in a way that she or he decides and controls, consistent with his or her values and beliefs.

23. Medical Aid in Dying • For those who are dying the issue is not whether they will die, but how they are going to die and who makes the decision. Medical aid in dying should be an available option • It occurs when a terminally ill, mentally competent adult patient, who is likely to die within six months, takes prescribed medicines, which must be self-administered, to end suffering and achieve a peaceful death.

24. Medical Aid in Dying • Medical aid in dying is not just a reasonable end-of-life option, but a better choice for some terminally ill patients than other ways in which death may be hastened. • Most importantly it has been proven to be a safe, ethical medical practice which benefits patients and families and causes no harm.

25. Medical Aid in Dying • Medical aid in dying occurs throughout the country, but in states other than those where it is now authorized, it is done underground, is unregulated and may not be legal. • The practice should be legal, above ground and reasonably regulated. Physicians and family members should not be at risk of punishment.

26. Medical Aid in Dying Medical aid in dying which may be termed euthanasia or assisted suicide, and which may also apply to people who are not terminally ill, has been approved in various countries. Each law has its own limits, rules and guidelines. All but Switzerland forbid foreigners this type of help to die.

27. Medical Aid in Dying The following countries permit some form of medical aid in dying: • Switzerland - 1940 • Oregon (U.S.) - 1994 • Colombia - 1997 • The Netherlands - 2002 • Belgium - 2002 • Luxembourg - 2009 • England & Wales - 2010 (prosecution policy statement) • Canada – 2016 • Victoria, Austrailia - 2017

28. Medical Aid in Dying • California (End of Life Option Act; approved in 2015, in effect from 2016) • Colorado (End of Life Options Act; 2016) • District of Columbia (D.C. Death with Dignity Act; 2016/2017) • Hawai‘i (Our Care, Our Choice Act; 2018/2019) • Maine (Maine Death with Dignity Act; 2019) • Montana (by court decision; 2009) • New Jersey (Aid in Dying for the Terminally Ill Act; 2019) • North Carolina (Possibly permissible as no prohibition) • Oregon (Oregon Death with Dignity Act; 1994/1997) • Vermont (Patient Choice and Control at the End of Life Act; 2013) • Washington (Washington Death with Dignity Act; 2008)

29. Medical Aid in Dying

30. Medical Aid in Dying Medical aid in dying is not assisted suicide • Terminally ill patients who consume life ending medicines are not suicidal. Stark differences exist. Suicides are committed by those who can continue to live, but choose not to; are done in isolation, often impulsively and violently; and they are tragic.

31. Medical Aid in Dying • To the contrary, medical aid in dying is available only to terminally ill patients who will soon die; the process usually takes at least several weeks; it occurs after consultation with two physicians and almost always with family support; and it is empowering.

32. Medical Aid in Dying • The term “assisted suicide” is rejected by the American Public Health Association, American Academy of Hospice and Palliative Medicine, American Medical Women’s Association, the American Psychological Association, American Academy of Family Physicians, among others, and in the state laws which permit medical aid in dying.

33. Medical Aid in Dying • In 2017 the American Association of Suicidology issued this statement: “Suicide is not the same as physician aid in dying”. http://www.suicidology.org/Portals/14/docs/Press%20Release/AAS%20PAD%20Statement%20Approved%2010.30.17%20ed%2010-30-17.pdf

34. Medical Aid in Dying Provisions in medical aid in dying (MAID) laws, generally include: • Patient must be at least 18 years of age, have a prognosis of 6 months or less to live, diagnosed with an illness that is incurable and irreversible, confirmed by an attending and a consulting physician. • A patient requesting medical aid in dying (MAID) shall not be considered suicidal, and patients self-administering medical aid in dying medication shall not be deemed to have committed suicide.

35. Medical Aid in Dying A patient must make an oral and a written request (on a form provided in law) for MAID.  The written request must be witnessed by 2 adults who attest that the patient: 1) has capacity; 2) is acting voluntarily, of their own volition; and 3) is not being coerced.

36. Medical Aid in Dying • If the attending or consulting physician has any doubt about the patient’s capacity, or feels the patient has impaired judgement due to a psychiatric or psychological disorder, the physician must refer the patient for evaluation by a mental health professional.  • Only patients subsequently found to have capacity may proceed.

37. Medical Aid in Dying • A patient may rescind his or her request for medication at any time without regard to capacity. • The patient must wait 15 days to obtain the medication after the first request. • Patients must self-administer the medication. • An attending physician must have primary responsibility for the care of the patient requesting MAID and the treatment of the patient’s terminal illness.

38. Medical Aid in Dying • Physicians, other health care providers and health care facilities acting within the law are protected from civil, criminal, and professional liability. • Physicians, nurses, pharmacists and other health care providers are under no obligation to participate in MAID. • The sale or issuance of physician malpractice insurance or rate charged cannot be conditioned on or affected by whether the insured participates in MAID.

39. Medical Aid in Dying • Health care providers are not subject to civil or criminal liability or professional disciplinary action for being present when medication is taken, or for failing to prevent the medication from being taken. • Private health care facilities may refuse to participate in MAID if they find it morally objectionable or if it is against their religion and they have informed the patient of the policy. 

40. Medical Aid in Dying • Insurance benefits cannot be denied based on any MAID actions, and insurers can’t condition the sale or issuance of life or health insurance policies or set rates on the making or rescinding of a request for MAID, nor can insurers provide information on MAID medication unless requested by the patient or physician, or communicate both the denial of coverage for treatment and information as to the availability of MAID medication.

41. Medical Aid in Dying • The sale or issuance of physician malpractice insurance or rate charged cannot be conditioned on or affected by whether the insured participates in MAID. • Actions in accordance with the law shall not be considered suicide, assisted suicide, attempted suicide, promoting a suicide attempt, mercy killing, or homicide • A MAID patient’s death certificate shall specify the underlying terminal illness as the cause of death.

42. Medical Aid in Dying The laws allowing medical aid in dying have worked as intended • There is evidence that deaths by medical aid in dying are at least as good, and in some cases better deaths than others. (See “Quality of Death and Dying in Patients who Request Physician-Assisted Death”, Journal of Palliative Medicine, Volume 14, Number 4 (2011);445-450).

43. Medical Aid in Dying • There is evidence that family members of those who request medical aid in dying feel better prepared and accepting of the death, and that there are no negative effects. (See “Mental Health Outcomes of Family Members of Oregonians Who Request Physician Aid in Dying”, Journal of Pain and Symptom Management, Volume 38, Issue 6 (2009);807-815.)

44. Medical Aid in Dying • About 90% of those in Oregon who end their lives by medical using aid in dying are receiving hospice care (which means that even hospice can’t meet all the needs of all dying patients); almost all have health insurance, and most are college educated. (See https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year19.pdf).

45. Medical Aid in Dying • A comprehensive cancer center in Seattle which implemented a program for patients to access medical aid in dying found that “Overall, our Death with Dignity program has been well accepted by patients and clinicians”. See N Engl J Med 2013; 368:1417-1424

46. Medical Aid in Dying None of the problems expected or anticipated by opponents or skeptic have materialized. • There is no evidence of disproportionate impact on vulnerable populations. (See “Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in ‘‘vulnerable groups”, Journal of Medical Ethics 2007; 33;591–597.)

47. Medical Aid in Dying • Nor is there any evidence of any coercion or abuse. • With regard to those with disabilities, consider, particularly a letter from the Executive Director of Disabilities Rights Oregon in 2016 where he categorically states that “DRO has not received a complaint of exploitation or coercion of an individual with disabilities in the use of Oregon’s Death with Dignity Act” (letter dated Feb. 10, 2016)

48. Medical Aid in Dying There is widespread support for medical aid in dying. “When a person has a disease that cannot be cured...doctors should be allowed by law to end the patient’s life by some painless means if the patient and his or her family request it.” (Gallup Poll, June 2017) Yes, 73%, No, 24% No opinion, 3%

49. Medical Aid in Dying Support exists among different demographics regardless of: Race and Ethnicity; Age Groups; Political Affiliations; Religious Affiliations

50. Medical Aid in Dying • Physicians support aid in dying by an almost 2 to 1 margin, 57% to 29% per a 2016 Medscape poll. • In New York physicians support the Medical Aid in Dying Act by more than a 3 to 1 margin, 67% to 19%, per a 2018 Medscape poll.