Aid in Dying: Background for physician testifiers INTRODUCTIONS AND WELCOME. David Grube, M.D., Medical Director Rebecca Thoman, M.D. Doctors for Dignity

Why testify? Doctors are respected authorities and technical medical experts Doctors are trusted by patients, the public and lawmakers Doctors have personal experience with death and dying Lawmakers don’t have medical experience and NEED OUR INPUT

What to expect Chaotic environment Short notice Long wait times 2 – 3 minutes to speak

Get your doctor on Lawmakers will defer to you as an expert when you speak authoritatively about what you know. Plus, you should wear a white coat or scrubs.

What to say Your qualifications Factual information Personal story Title, roles, years of experience Factual information Basic talking points Personal story Patient story Personal passion You can read your testimony.

Your testimony How aid in dying works – it is an accepted medical practice Data from Oregon show it’s working well More than 200 physicians participating in aid in dying demonstrate the utmost integrity

What not to say You are not expected to be an expert on the political process Don’t be afraid to say “I don’t know” or defer to other experts Don’t let opponents control the narrative Don’t give your own opinion Finally – STAY ON MESSAGE Great example from smoke-free debate. Example for aid in dying – slipper slope

States Where Aid in Dying is Authorized Oregon, 1997, by ballot initiative Washington, 2008, by ballot initiative Montana, 2009, by court ruling Vermont, 2013, through legislation California, 2015, through legislation Since the Death with Dignity Act was passed by voter referendum in 1994, later appealed, and dismissed, there have been numerous challenges, including two state supreme court appeals, and all of them have been dismissed, upholding the medical aid-in-dying law. 16% if the US population has access to aid in dying.

ORS 127 Death With Dignity Act (DWD) An adult who is capable, is a resident of Oregon, and has been determined by the attending physician and consulting physician to be suffering from a terminal disease, and who has voluntarily expressed his or her wish to die, may make a written request for medication for the purpose of ending his or her life in a humane and dignified manner in accordance with ORS 127.800 - 127.897.

ORS 127 Physician Components Two oral requests from patient (not necessarily in person) At least 15 days apart Written request (after both doctor’s eval.) Signed by two witnesses Prescription may not be written until 48 hours after second oral request. Washington state, Vermont, and California laws mirror this process.

ORS 127 Physician Responsibilities Inform patient of feasible alternatives: Hospice Care / Palliative Care / Pain Control Must request (but may not require) patient notify next of kin of Rx request

Medication Step One – antiemetic Taking metoclopramide (Reglan, 20 mg) and ondansetron (Zofran, 8 mg) is recommended about one hour prior to taking the barbiturate. Step Two – short-acting barbiturate Prescribe Secobarbital (Seconal, 10 g) in powder form, to be mixed with liquid and ingested within 120 seconds The time to death from ingestion ranges from five minutes to several hours. There is no one aid-in-dying medication, there are several different prescriptions that doctors can write for a terminally ill, mentally capable adult with a prognosis of 6 months or less to live. The specific aid-in-dying medication chosen is between the patient and the doctor. Prescriptions for aid in dying involve three separate medications: normally a short-acting barbiturate and drugs to speed absorption and prevent nausea. Secobarbital is available as 100 mg powder-containing capsules. Many pharmacies will open the capsules and make them available in powder form if asked to do so by the physician. If the capsules are not opened, patients should use a bowl to collect the powder, extracting it by rolling the halves between thumb and index finger. Mix the powder immediately before use in four ounces of room temperature water. Only clear or nonfatty liquids should be consumed for approximately four to six hours prior to ingestion of the barbiturate. In 2014, the time of death from ingestion varied from 5 minutes to 5.6 hours, and there were no cases of ‘awakening.’ Although the average time of death is one hour, there have been a very few instances when it has taken up to days for the dying process to complete. Unconsciousness happens on average within 5-10 minutes. There have been a very few instances of awakenings. Ask your patients what they want to do if they do not die from the medicine, and have them make their wishes clear to their caretakers and decision makers.

ORS 127 Patient’s Rights The choice of DWD cannot affect status of health or life insurance Death certificate will list terminal diagnosis (e.g., lung cancer) DWD does not constitute suicide, mercy killing, or homicide under the law

Aid in Dying is not Suicide Medical Aid in Dying Terminal diagnosis Mental capacity Patient wants to live Planned; w/ family Death is ‘gentle’ Normal grieving after loved one’s death (guilt is rare) Suicide No terminal diagnosis Incapable (psychiatric diagnosis) Patient wants to die Impulsive; alone Death may be violent Abnormal grief (family members wonder “what if?”) The word suicide doesn’t describe the experience of the patient and people around them in aid in dying … to the contrary, there is love, inclusion, leave taking, completion, openness. Aid in Dying differs from euthanasia in that the medicine is self-administered in aid in dying, and it is administered by a third party in euthanasia. This is an important distinction because it ensures that the person using the law is able to change their mind at any moment in the process.

OR 127 Death Certificate Two purposes: Legal (to determine an estate) Medical (to determine the manner of death) Regulations provide incentive for physicians to comply with ORS 127 in order to be protected Epidemiology A death certificate serves two purposes: 1) Record the fact of death for legal purposes 2) Record the cause of death for public health statistical purposes Manner of Death is considered “natural” unless injury, homicide or suicide Epidemiology: For public health statistics (frequency of infectious disease, occupational hazard, etc.)

Death Certificate Manner of death is the disease itself Example: patient in car accident; closed head trauma; in coma in ICU; AD; family decides to remove ventilator. Manner of death is not withdrawal of ventilator; that is not entered into the death certificate Privacy concerns HIPPA Physician privacy We don’t say the the medical staff team “killed” the patient when we remove life support. The death certificate is a public record. If AID is put on the DC, then the privacy of the patient's choice is betrayed, as is the name of the prescribing physician.

Insurance Federal Medicare Medicaid VA Private insurance Private insurance may or may not cover aid-in-dying medication and the appointment necessary to get through the process. VA and Medicare do not cover AID medication or appointments because there is a federal prohibition on funds being used for AID. Medicaid in Oregon does cover AID medication and appointments using state funds, but no federal dollars.

Liability No liability for physicians if protocol is followed No disciplinary action taken against a licensed physician by any state medical boards No increase in liability insurance rates

Data from Oregon: Allaying Fears and Dispelling Myths Simply having a prescription for aid in dying medication on hand is a comfort. People who use the law have terminal illnesses, not conditions associated with disabilities. People use the law to minimize pain and suffering, not to save money. Communities of color have not been disproportionately targeted; in fact they represent a tiny minority of people who have used the law. Source: Oregon Public Health Division February 2, 2015

Simply a prescription for aid in dying medication on hand is a comfort. 64% of the 1327 prescriptions written between 1998 and 2014 were actually used. Aid in dying represents one third of one percent of deaths. Totals (1998 – 2014) # of prescriptions used: 859 31 out of 10,000 total deaths in OR

Diagnosis of People who Used the Death with Dignity Law in OR

Hospice and Palliative Care Are Improved and Better Utilized 93% enrolled in hospice 89% died at home “There is evidence that the quality of palliative care has improved in Oregon since the implementation of the Oregon Death With Dignity Act… The reality is that in a state where assistance in dying is legal, physicians, and other healthcare workers are motivated to spend more time with patient in discussions about end-of-life choices, carefully exploring options and arranging for palliative care as an alternative to hastening death.” Lindsey, Ronald. “Oregon’s Experience: Evaluating the Record” In Oregon, 93 percent of people who used the law were enrolled in hospice and 89 percent died at home. The Center to Advance Palliative Care continues to rank Oregon as a leader in the field of Palliative Care. Oregon, Washington, and Vermont; where AID is authorized, are among only seven states plus the District of Columbia which receive a grade of A, with more than 80 percent of hospitals reporting palliative care services.

Reasons Patients Have Used the DwD Law 92% Loss of autonomy 89% Less able to engage in activities that make life enjoyable 79% Loss of dignity 50% Loss of control of bodily functions 25% Inadequate pain control 3% Financial implications of treatment

Breakdown of DwD Prescription Recipients by Race General Public Users of DWDA White 87% 97% African American 1.6% 0.1% American Indian/Native Alaskan 1.3% 0.2% Asian 3% 1.1% Hispanic/Latino 8% 0.7% No evidence of being used against minorities. In fact, concern has become equal access by poor

Positive Impact on Palliative Care According to a 2015 article in the Journal of Palliative Medicine, the Oregon Death with Dignity Act may have resulted in “more open conversation and careful evaluation of end-of-life options, more appropriate palliative care training of physicians, and more efforts to reduce barriers to access to hospice care and has thus increased hospice referrals and reduced potentially concerning patterns of hospice use in the state.” The article, Geographic Variation in Hospice Use Patterns at the End of Life, also found that Oregon had the highest quartile hospice use and the lowest quartile inappropriate hospice use Vol. 34 No. 3 September 2007 Journal of Pain and Symptom Management 277 Geographic Variation in Hospice Use in the United States in 2002 Stephen R. Connor, PhD, Felix Elwert, PhD, Carol Spence, RN, MSN, and Nicholas A. Christakis, MD, PhD National Hospice and Palliative Care Organization (S.R.C., C.S.), Alexandria, Virginia; and Department of Health Care Policy (F.E., N.A.C.), Harvard Medical School, Boston, Massachusetts, Inappropriate hospice use defined as very short enrollment, very long enrollment, or disenrollment

Positive Impact on Doctor-Patient Relationship Medical aid in dying is an ethical extension of the role of the compassionate healer and ally of the patient. It enhances trust within the doctor-patient relationship.

Journal of Palliative Medicine Clinical Criteria for Physician Aid in Dying An accepted medical practice. More than 200 physicians have participated in 5 states. How to respond to requests for AID How to ensure informed consent Medication protocol 83 practicing physicians in OR David Orentlicher, MD, JD,1 Thaddeus Mason Pope, JD, PhD,2 and Ben A. Rich, JD, PhD3; Physician Aid-in-Dying Clinical Criteria Committee JOURNAL OF PALLIATIVE MEDICINE Volume 18, Number X, 2015 DOI: 10.1089/jpm.2015.0092 http://www.ncbi.nlm.nih.gov/pubmed/26539979

Myths and concerns This is dangerous for the elderly, disabled and minorities It’s a slippery slope to euthanasia Greedy families will pressure the elderly If we only had hospice and palliative care this wouldn’t be necessary We just need better pain control Responses: Oregon data results dispute these myths. Criteria for aid in dying (terminally ill, adult, sound mind, self-administer) applies equally to all. No legal guardian or health care agent can act on behalf of another. Aid in dying is patient-centered and patient-driven, unlike European countries. We do need better access to and investment in palliative care and hospice. Oregon has best palliative rating in the country. Some suffering even palliative medicine cannot relieve. Physical pain is not the chief reason for using the law. Coercion is punishable by law.

Myths and concerns This is really just “assisted suicide” Won’t this be used by insurance companies to save money? It’s falsifying a death certificate to list the cause of death as “natural” Hippocratic oath says “do no harm” The AMA opposes assisted suicide Suicide is tragic result of untreated, reversible diseases like depression or addiction. Suicidal individuals want to die. Individuals using aid in dying don’t want to die, but in fact are dying with no hope of recovery. Depression is not the same as grieving. In suicide, rational control is interrupted by deficiencies of impulse control. With aid in dying, rational control prevails. There are accepted established guidelines for assessing decisional capacity. Hippocratic oath was written in 400 BC and begins by swearing to Apollo, Asclepius, Hygieia, Panacea and all the gods and goddesses. Doesn’t speak to contemporary issues – taken literally it bans surgery. AMA has not reviewed its position since 1992. With 20+ years of data and experience of hundreds of physicians, California Med. Association withdrew its opposition. Other leading health professional organizations support: AMWA, MPHA, NASW, CAFP, others

Next steps Prepare your testimony – we can help Practice reading it Review answers to questions Be ready to come to the Capitol

Doctors for Dignity Compassion & Choices P.O. box 101810 Denver CO 80250 1-800-247-7421 www.CompassionAndChoices.org/D4D