Outline of Talk Defining terms associated with Physician Aid - PDF document

5/23/16 Outline of Talk • Defining terms associated with Physician Aid Physician Assisted Dying in in Dying (PAD) California • Ethics and debates surrounding PAD • Overview of the End of Life Options Act • How to respond to PAD requests • How PAD is administered Elizabeth Dzeng, MD, PhD, MPH • Questions to consider when responding to the Division of Hospital Medicine, UCSF law Advances in Internal Medicine May 23, 2016 What is physician aid-in-dying? PAD vs Euthanasia Physician Aid in Dying (PAD) • physician provides a competent, terminally ill • Patient must self-administer drug patient with a prescription for a lethal dose of • Physician provides the medications, but the medication, upon the patient's request, which patient decides whether and when to ingest the patient intends to use to end his or her • legal in Oregon, Washington, Vermont, Montana, and soon California own life. Euthanasia • Physician Aid in Dying (PAD) versus Physician • Physician administers the medication or acts Assisted Suicide (PAS) directly to end the patient’s life • Illegal in every state in the US 1

5/23/16 Other practices distinct from PAD Withholding/withdrawing life-sustaining treatments: • A competent adult patient or their surrogate makes an informed decision to refuse life-sustaining treatment Pain medication that may hasten death: A terminally ill, suffering patient may require doses of pain • Ethics and debates surrounding PAD medications that cause side effect that may hasten death, such as impairing respiration Principle of double effect: Primary goal is relief of suffering, • secondary outcome is recognizing that death may be potentially hastened. Palliative sedation: Sedating a terminally ill patient to the point of unconsciousness • Intractable pain and suffering refractory to medical management • Imminently dying (hours to days) • Other life-sustaining interventions held, “comfort care” • 2

5/23/16 Why have people advocated for PAD? PAD and Patient Autonomy • Brittany Maynard, 29 year old with terminal • Societal trends that support individual brain cancer who ended her life in Oregon and autonomy and self-determination advocated for PAD • Societal backlash against overly aggressive • Views that death is an process that is care at the end of life invariably painful and full of suffering. • Is PAD a societal attempt to regain control • Inadequate access to palliative care over death? • Is more choice, rather than guidance and support or a more humanistic profession that fosters a “good death” the best? Physician as Healer or Harmer? Concerns about PAD • Ethical concerns included the physicians’ oath • Vulnerable populations (disability, minority of non-maleficence communities, elders, unbefriended, etc.) • “First do no harm” – overly aggressive – fear of coercion and secondary gain treatments at the end of life, treatments that – fear of being a burden as a motivation do more harm than good • Legalizing PAD without having adequate • What is the role of physician as healer? What about the role to relieve suffering palliative care resources can be seen as morally Commitment to holistic and spiritual healing? problematic Guiding patients through death? 3

5/23/16 Changing norms Long-term normative effects of PAD on social norms • Perpetuates assumptions that death is an unbearably painful process • Creates an ethical norm that death can be a easy solution to problems • Influences perceptions of self-worth and the value of life, especially amongst disability community (i.e. ableism) “Slippery Slope” Argument • End of Life clinic in the Netherlands (second opinion clinic). In 2012, of 645 applications, California’s End of Life 25% (162) approved Options Act • Belgium has legalized PAD in children • Depression qualifies for PAD in Netherlands 4

5/23/16 Timeline of the EOL Options Act 1/5 of the US population now able to request PAD • ABx2 15 was signed into law by Governor Jerry Brown on Oct 5, 2015 Population (in millions) • Law to go into effect 90 days after the close of UnitedStates 318.9 the special legislative session California 38.8 Washington 7.06 • This session ended on March 10, 2016 Oregon 3.97 • The law will go into effect June 9, 2016 Montana 1.02 Vermont 0.63 California as a Watershed End of Life Options Act Allows terminally ill patients to request a drug that will end the patient’s life Who considers PAD in • Must be 18 or older and a resident of California OR? (T olle, 2014; OHA, 2015) • Must have a terminal disease with a prognosis of less • 98% white than 6 months to live • 78% over 65 years old • Must have the capacity to make decisions 43% had at least a • • Not have impaired judgment due to a mental disorder college degree • Have the ability, mentally and physically, to take the drug independently • Cannot be requested in advance directive, nor by surrogates 5

5/23/16 How often do patients think about Moving Forward aid in dying? • Law has passed, how can both sides come together to provide ethical care? 10% of dying patients consider PAD • Regardless of whether you support it, need to respond (not necessarily implement) 1% of those patients request PAD • This will mostly be an outpatient and hospice issue (90% of Oregon ingestions at home, 92% enrolled in hospice) 1 in 10 of those who request ingest How often do patients think about Why do patients ask for aid in dying? aid in dying? • Oregon 2015 data 10% of dying patients consider PAD 1% of those patients request PAD 1 in 10 of those who request ingest http://public.health.oregon.gov/ProviderPartnerResources/Evaluation Research/DeathwithDignityAct/Documents/year18.pdf Slide courtesy of Laura Petrillo 6

5/23/16 What the patient says: What the patient is thinking: I’m thinking about aid in ? dying What to do if you get a request? ? ? Slide courtesy of Laura Petrillo Exploring the Request Supporting the patient • Clarify what is being asked before responding • Support the patient, reinforce commitment to • Explore reasons for the request finding an acceptable solution, regardless of • Assess whether palliative care needs (i.e. pain and your personal views symptom control) are being adequately addressed • Reflect on your personal views on PAD and • Explore other reasons that may be contributing to death and how that might influence the way unbearable suffering including family, spiritual or you communicate existential crisis. T ake into account patient’s • Respond empathetically to emotion support system • Evaluate for capacity and screen for depression or other mental health issues 7

5/23/16 Exploring the Request What Patients Value • Assess understanding of diagnosis, prognosis and • Openness to discussing PAD, death, and dying goals of care • They understand PAD is controversial so • Assess whether palliative care needs (i.e. pain appreciate a physician who can transcend and symptom control) are being adequately taboo and discuss it maturely and addressed and intensify symptom management professionally and treatable causes of suffering • Discuss alternatives - Hospice referrals, social • Important to maintain therapeutic alliance work referrals, etc. and support patient regardless of whether • Help patient complete POLST , DNR or other clinician supports PAD appropriate advanced directive forms Physician Discomfort Biomedical Focus PAD often provokes a strong emotional response that makes conversation palpably awkward: “I know that happens, but—what about let’s do “I learned that he’ s a baseball fan and much the chemotherapy (Back, 2002).” more comfortable if I change the topic to baseball…it’ s awful when you have to try to make them feel comfortable, but that’ s the way it is (Back, 2002).” 8

5/23/16 PAD as a Gateway to Talking About Death “The most important events in your life are your transitions, your birth and your death . . . the beginning and the end of this physical existence. How is PAD Administered? But you can’t talk to your doctor about it without them getting all weird, [thinking] that you’re suicidal or something.” “Y ou’re trying to get a doctor to sit down and listen to you . . . but they never, ever get the overall picture (Back, 2002).” The Process The Process • Attending physician must determine prognosis and capacity • The patient must then see a second physician (consulting physician) who can confirm • Patient must make two oral requests at least diagnosis, prognosis, and capacity 15 days apart directly to the same physician, as well as one written request • If either physician thinks the patient may have • Written request on a special form that is a mental disorder, they must also see a mental witnessed and signed by patient health specialist to ensure unimpaired • Must be done without anyone else present judgment (except interpreter) to insure voluntariness 9