TESTIMONY BEFORE HOUSE HUMAN SERVICES COMMITTEE – 23 Feb 2007

Opposition to H-44 (Legalization of Physician-Assisted Suicide)

Vermont Alliance for Ethical Healthcare

www.vaeh.org

Robert Orr, MD, president of VAEH; credentials:

• FP in Brattleboro for 18 years; volunteer medical director of VT’s first hospice

• VT Family Doctor of the Year, 1989

• postdoctoral training in ethics; ethics consultant for 18 years, in IL, CA, VT

• teacher of palliative care techniques at 2 medical schools

• served on 7 hospital ethics committees, chair of 3, and on several statewide and national ethics committees or commissions

• AMA Award for Leadership in Medical Ethics and Professionalism (1999)

• speaking out against PAS/E for over 30 years, in VT, round US, on 6 continents

• Scholar in Residence, Oxford, UK, 2006

VAEH is a coalition, primarily of health care professionals

What is the PAS issue about?:

• It’s not about pain

• currently available methods make dying in pain unnecessary
• ~20% of Oregonians who use PAS say it is because of fear of future pain

• It’s not about preventing protracted dying in the ICU

• already accepted practice to stop life-extending treatment

• It’s not about a covenant between a dying patient and his/her physician

• >70% of lethal prescriptions are written by Compassion & Choice MD’s

• It’s not about patient choice

• MD must agree with patient’s choice; only 1 request in 6 is filled in OR
• thus any “peace of mind” is a false sense of security

• It’s about depression

• 84% who use PAS in OR made the request because of “lost enjoyment”

• It’s about physician liability

• one MD supporter of legalizing PAS in VT said in a TV interview on WCAX in November 2005 that he has written lethal prescriptions for patients, even when it was not legal; his firm belief in the supremacy of patient choice led him to accept some potential criminal liability
• H-44 would remove MD’s concern about liability
• If MD’s are willing to break the rules before legalization, why would they follow the rules afterward?

PAS is not needed:

• patient already has choice to stop any unwanted treatment

• CPR, ventilator, ICU care, chemotherapy, transfusions, IV fluids, feeding tubes

• important to understand the difference between
  • negative autonomy rights (refusal of treatment), which are nearly unassailable
  • positive autonomy rights (demand for treatment), which are frequently over-ridden; e.g., antibiotics for viral infection, narcotics for moderate headache, appendectomy for kidney stone

• adequately trained primary physicians can address most needs of dying patients
  • when they cannot, these can be handled by specialists in hospice and palliative care 97-98% of the time
  • in the rare patients (2-3%) whose end-of-life symptoms cannot be controlled adequately by the palliative care specialist, the option of palliative sedation is ethically and legally available [this can be abused and needs cautious oversight]

• if patient wants to hasten death, he or she can stop eating and drinking
  • leads to death in 5-12 days, shorter than the time needed to meet the requirements of H-44 (17 days, plus time for 2nd medical opinion and mental health evaluation “if indicated”)
  • no discomfort from dehydration as long as mouth is kept moist

The Oregon “safeguards” are not safe enough:

• no requirement for suffering; only competence, adulthood, prognosis of less than 6 months, and desire to hasten death
• the “six months or less” prognosis is a guess at best
  • prediction of death is notoriously inaccurate prior to 2 weeks before death
  • 13% of hospice patients are discharged each year because they don’t die
  • Art Buchwald – referred to hospice with “only a few weeks to live” a year ago; later discharged; wrote “Too Soon to Say Goodbye”; died recently
  • Joan Welch (late wife of Senator Peter Welch) – prognosis of less than 6 months, thankfully lived 9 years
  • Cal Blessing (Vermont veterinarian) – prognosis of less than 6 months 8 years ago, now cancer free
  • SO WE DON’T REALLY KNOW

• depression is often subtle, difficult to diagnose;
  • underdiagnosed a wish for death has always been “a cry for help”; when did this change?
  • in a review of 35 peer-reviewed studies in past 5 years of the psychological distress in EOL care, an overwhelming conclusion is that a desire for hastened death is tantamount to a diagnosis of depression o no requirement for mental health evaluation; only if MD feels necessary
  • 94% of OR psychiatrists say they can’t be confident of diagnosis of depression after just 1 visit
  • frequency of psych consult has dropped steadily from 35% to 5%
  • SO WE DON’T REALLY KNOW

• official reports are merely a compilation of reports from MD’s who have written lethal prescriptions; MD’s unlikely to report cases done outside the law or where serious complications occurred
  • in Belgium, estimated by medical society only ¼ are reported
  • Netherlands, after 6 years of rumors that PAS/E was done much more often than reported, the government did a study, found that only 10% of actual cases were being reported; now up to 40%; OR government has not done such studies
  • SO WE DON’T REALLY KNOW

• multiple reports in OR newspapers of use outside the law
  • patients with depression (Joan Lucas, Michael Freeland, Dr. Bentz’s anonymous patient)
  • patients with dementia (Kate Cheney)
  • patients unable to take pills alone (Patrick Matheny, Barbara Houck, Wanda McAllister)
  • patients pressured by family (Kate Cheney)
  • instances of lethal injection (James Gallant, MD; Michael Coons, RN)
  • instances of MD suggesting PAS (Mrs. Stevens)
  • THIS GIVES US AN INKLING OF WHAT IS REALLY HAPPENING, BUT WE DON’T REALLY KNOW

• Oregon Health Division, charged with collecting and publishing annual data, says, “The Oregon Health Division is charged with collecting information under the Death With Dignity Act but also obligated to report any cases of noncompliance with the law to the OR Board of Medical Examiners. Our responsibility to report noncompliance makes it difficult, if not impossible, to detect accurately and comment on underreporting. Furthermore, the reporting requirements can only ensure that the process of obtaining lethal medications complies with the law. We cannot determine whether physician-assisted suicide is being practiced outside the framework of the Death With Dignity Act”; OHD has no authority or resources to do any surveillance or investigations. SO WE DON’T REALLY KNOW.

• OHD reports only 1 serious complication in 208 deaths (Michael Pruitt didn’t die, but awoke 65 hours after taking “lethal” dose); Oregon MD’s use the same dose of the same drug for PAS as is used in the Netherlands. In the Netherlands, there are reports of 18%, 20%, and 25% of individuals who do not die (3 different studies); those patients are subsequently given a lethal injection which is legal there.
  • some say the OR MD’s have switched to a liquid form of pentobarbital; however there is no oral liquid form manufactured; only liquid form is for intravenous injection, and if used by mouth it would require 7 ounces of horribly bitter liquid that almost always induces vomiting
  • SO WE DON’T REALLY KNOW

• the time from ingestion to death is reported to be as short as 4-5 minutes in some, an average of 25 minutes
  • oral barbiturates do not kill that fast; they may induce sleep that fast
  • rapid death comes from injection or from concomitant use of a plastic bag
  • SO WE DON’T REALLY KNOW What is the ultimate goal of PAS proponents?:

• UNFORTUNATELY, THIS IS ONE PLACE WHERE WE DO KNOW
• World Federation of Right to Die Societies (1998) – “We believe that we have a major responsibility for ensuring that it becomes legally possible for all competent adults, suffering severe and enduring distress, to receive medical help to die, if that is their persistent, voluntary and rational request.”
• Derek Humphrey – ultimate goal is legalized euthanasia, but “it is not politically prudent to begin with that”
• Dr. Diana Barnard, on VT DWD board, said at a DWD meeting in Barre that the proposal is “merely a first step” and may not meet the needs of everyone
• Ludwig Minelli (founder of Dignitas, in Switzerland) – Dignitas plans to expand, opening a chain of death centers “to end the lives of people with illnesses and mental conditions such as chronic depression.”
• Philip Nitschke (PAS leader in Australia) – “My personal opinion is that if we believe that there is a right to life, then we must accept that people have a right to dispose of that life whenever they want…. So all people qualify, not just those with the training, knowledge or resources to find out how to ‘give away’ their life. And someone needs to provide this knowledge, training or resource necessary to 5 anyone who wants it, including the depressed, the elderly bereaved [and] the troubled teen.”
• Derek Humphrey – in Freedom to Die (1998) he predicted that PAS will become an accepted method of cost containment, “economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable behavior”
• passage of minimalist bill with subsequent effort to expand is not without political precedent, even here in VT — witness medical marijuana, civil unions

Legalized PAS and euthanasia have been expanded from original restrictions in every jurisdiction except Australia and Oregon:

• Netherlands – from competent, suffering, terminally ill adult, to now include chronic mental health, terminally ill adolescents, handicapped newborns
• Belgium – from unrelieveable suffering in competent adult, to now include infants; proposal to expand to include teens, degenerative diseases (e.g., Alzheimer)
• Switzerland – from AS for terminally ill Swiss adults, to now include tourists from other countries, people with chronic diseases (e.g., Alzheimer, epilepsy, arthritis, cerebellar ataxia); proposal to include mental illness and to expand to euthanasia
• Australia – terminally ill adult with unacceptable suffering; law repealed after being in place less than a year, primarily because of inadequate access to palliative care options
• Oregon – no expansions on the books
  • law requires self-administration, but numerous reports of “assistance” to debilitated patients
    • Deputy Attorney General believes law violates ADA and may need to be expanded to include those unable to swallow pills without assistance
  • law prohibits lethal injection, but
    • Barbara Coombs Lee, 1 of the authors, believes wording allows delivery of lethal drug by inhalation or intravenous infusion
  • Kathryn Tucker, legal council of Compassion & Choices, referring to the “safeguard” that requires a 15 day waiting period, explained that, after failing in several states, their strategy evolved: “…that a 15-day waiting period would be struck down immediately as unduly burdensome…But in the legislative forum, to pass, you need to have measures that convince people that it’s suitably protective so you see a fifteen day waiting period.”

What about other states?:

• In spite of spending huge sums by national “Death With Dignity” organizations since the OR law went into effect, attempts to legalize PAS has failed (by referendum or legislative failure) in Arizona, California, Hawaii, Maine, Michigan, Vermont (so far), Washington, and perhaps others.
• At the same time, 14 or more states have added or strengthened laws against PAS.

Who is funding this movement to legalize physician-assisted suicide?

• Hard to know because state and national organizations keeps changing their names: Euthanasia Education Council, Right to Die Society, Hemlock Society, Caring Friends, Death With Dignity, Compassion in Dying, End-of-Life Choices, Compassion and Choice
• VT End-of-Life Choices said in a fund-raising letter 2 years ago that they had received “principal financial support from the national organization of Compassion and Choice.” They also said C&C was giving serious consideration to their 3-year budget proposal of $325,000.

What about public opinion on PAS?

• It depends on who asks and what they ask:
• CBS News Poll “If a person has a disease that will ultimately destroy their mind or body and they want to take their own life, should a doctor be allowed to assist the person in taking his or her own life or not?”

• Charlton Research Co. (1997) – “Do you think a person has the moral right to end his/her life when they are experiencing

• WCAX Channel 3 (2003 poll by “Research 2000”) – “Do you favor a law that would allow doctors to help terminally ill patients die?”
• YES 44% / NO 45%

• Death With Dignity Poll (2004 poll by Zogby International)

Q1: “Which of the following 2 options most closely represents your belief.

A. If I am terminally ill, within 6 months of dying with no hope of recovery, the decision about when I should be able to bring a peaceful end to my suffering is mine to make in accordance with my wishes and in consultation with my family and loved ones.

B. Given the sacredness of human life, only God should decide when my life ends.”

Option A 72.0% / Option B 23.8%

Q2: “Would you support or oppose legislation to allow a mentally competent adult, dying of a terminal disease, the choice to request and receive medication from a physician to peacefully end suffering and hasten death?”

SUPPORT 77.7% / OPPOSE 17.0% 8

• Last Acts 1999 poll (US) – “In your opinion, how should we deal with the problem of end-of-life pain and suffering?”

Improve care for the dying: 65%

Make physician-assisted suicide legal: 23%

• use of the word “suicide” decreases support for allowing physicians to write lethal prescriptions by 10-17% (explains why supporters insist physician-assisted suicide is not “suicide”, but “death with dignity” or “choosing the moment” or “physician aid-in-dying” or “an end-of-life choice”)
• role of the state legislature is not to merely do what the people want o but to do what is best for the people o 78% would probably opt for lower property taxes

Is physician-assisted suicide really suicide?:

• Purpose of H-44: “This bill proposes, subject to appropriate safeguards, to allow a mentally competent person diagnosed with less than six months to live to request a prescription which, if taken, would hasten the dying process.”
• Webster’s Dictionary “the act or an instance of taking one’s own life voluntarily and intentionally especially by a person of years of discretion and of sound mind”
• Statutory construction: “…Action taken in accordance with this chapter shall not be construed for any purpose to constitute suicide, assisted suicide, mercy killing or homicide under the law.”
• last sentence: “A person who violates this section and thereby causes the death of the patient shall be guilty of first-degree murder and subject to the penalties…”
• Dr. Babbott’s favorite analogy here is persons jumping from the WTC when flames licked at their heels; he says this is not suicide, but a matter of choice; philosophers can argue about whether it is suicide, but what is clear is that they chose the mechanism of death, not the time of death; far different with a person pursuing PAS 6 months before predicted death.

Does legalization of PAS improve end-of-life treatment?

• No. The several improvements in hospice and palliative care in OR began in 1990, 7 years before the law went into effect
• a study in the Journal of Palliative Medicine in 2004 found that the incidence of intolerable pain at the end of life in Oregonians increased by 50% from 1996 to 2002

What effects might legalization of PAS have on our society?

• unknown
• it sends a sad message
  • “I wouldn’t want to live like that”
  • “Your life is not worth living”
• how will this be heard or interpreted by:
  • elderly?
  • disabled?
  • troubled teens?
  • the uninsured?
• suicide is a major problem, especially among elderly and among teens
  • Oregon has recently begun a campaign to reduce suicide among elderly citizens
  • “The Vermont Suicide Prevention Platform” (2005) developed by a multidisciplinary group aimed at reducing suicides in VT. Among the specific recommendations,
    development and implementation of effective suicide prevention programs
    promotion of efforts to reduce access to lethal means and methods of self-harm
  • Are we going to do this by
    saying suicide is OK in certain circumstances?
    allowing lethal prescriptions to be available for up to 6 months?

Read part of a letter from Dr. Bentz, a colleague in Oregon:

• the oncologist (1) failed to address the needs of a patient with documented depression and (2) he falsified a public record
• death certification:
  • a detailed process with strict rules
  • “immediate cause” (with time interval to death) due to “underlying causes” (with time interval to death)
  • from the US Standard death certificate: “The cause of death means the disease, abnormality, injury, or poisoning that caused the death”
• WE JUST DON’T KNOW WHAT IS HAPPENING

What should we say to a person who is suffering at the end of life?

• “I’m sorry things are so difficult. What can I do to help?”
• “I’m sorry things are so difficult. Let me help you end your life more quickly.” We need to come alongside that person, and the family, and help address their physical, emotional, social and spiritual needs. What is needed is more and better palliative care and hospice services.
• Human Services Committee and legislature made a small start last year
  • authorizing pre-hospital DNR orders
  • establishing an Advance Directive Registry
• you are naïve if you think this fixed the problem
• It is unacceptable, unconscionable and a dereliction of your duty to try to “fix the problem” by allowing VT physicians to prescribe lethal poisons intended to allow terminally ill patients to take their own lives, especially when there are so many unanswered questions.

Testimony given 23 February 2007 to the Vermont House Human Services Committee, orally in part and wholly in print, by Robert D. Orr, MD, CM, president, Vermont Alliance for Ethical Healthcare.