End-of-Life Choice, Palliative Care and Counseling

End of Life Care Expert Barbara Coombs Lee Addressed All Party Parliamentary Group in Londonby Jay

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PORTLAND, OR – Compassion & Choices (C&C), the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, today announced that Barbara Coombs Lee, president of Compassion & Choices, addressed an all Party Parliamentary Group in London, UK, on American Choice at the End of Life.

Barbara was asked to speak to the group about the American approach to choice and control for dying patients, with special attention to the data acquired through 14 years of experience with Oregon’s Death with Dignity Act.

Barbara’s speech to the Parliamentary Group is below.

“Good afternoon. Thank you for inviting me to speak with you today. I feel honored to be before you and grateful for your dedication to the relief of suffering at life’s end.

“My organization, Compassion & Choices, has been at the forefront of the American movement for choice in dying over 30 years. We hold the vision of a society where people receive excellent care and comprehensive choices for comfort, dignity and control — in other words to live and die as free people, according to their own values and beliefs. We employ the strategies of support and consultation for individual clients throughout the nation, education of the public and healthcare professionals and advocacy in legal, legislative and policy arenas in state and national government.

“First a word on language.  I will use the term of art ‘aid in dying’ to refer to the medical practice in which a terminally ill, mentally competent obtains a prescription for life-ending medication from his or her physician. We assert, and mental and public health authorities confirm, that the word ‘suicidal’ is inaccurate to describe a rational, enduring request from a person dying of cancer, ALS or other disease of bodily disintegration. People act from a desire for insurance against unbearable suffering, not from the self-destructive impulse of mental illness. We use less emotionally charged, value-neutral and accurate terms like assisted dying or aid in dying.

“As many of you know, the Death with Dignity Act passed by citizen’s initiative in Oregon in 1994. I was an author and campaigner. Implementation was delayed three years by court challenge during which the legislature put repeal on the ballot, forcing a second statewide vote in 1997. It survived repeated legal and political challenges, in federal court, (twice at the US Supreme Court), the US Congress, the Executive Branch’s Justice Department, and the ballot box.  The right is now secure, having earned respect as a valuable addition to the liberties we enjoy in a democratic society. This year a survey by the National Journal and Regence Foundation found 77% of Oregonians hold a favorable opinion of the law.

“The basics are these:

•    Every year one in six dying Oregonians talks with their families about their options for aid in dying under the law. One in 50 begins the eligibility process by asking their physician to make it available. One in 500 ultimately dies through self-administration of medication they obtained.

•    The eligibility process involves 2 physicians — attending and consulting — who must verify the diagnosis and prognosis, attest to mental competence of the patient, absence of undue influence, coercion, or psychological impairment, order a psychiatric evaluation if impaired judgment is suspected, advise the patient of all treatment alternatives including hospice, document two oral and one signed request, enforce 2 waiting periods, confer with the dispensing pharmacist and submit written documentation of all this to Oregon Health Authority, Department of Public Health.

•    Patients making requests are usually dying of cancer, elderly, well-educated and receiving hospice services at home.

“For fourteen years the law’s provisions and its impact on medical care and the community have been the focus of intense investigation, academic research and government reporting. No other healthcare decision to advance the time of death has ever received such scrutiny.

“Investigators at Oregon Health and Science University, Department of Veterans’ Affairs Medical Centers, the Federal Centers for Disease Prevention and Control, the University of Washington, and Oregon’s own public health department have studied it from every angle. They have published an extraordinary array of data in some of the most prestigious medical journals in the world, including the New England Journal of Medicine, the Journal of the American Medical Association, Archives of Internal Medicine and British Medical Journal. Every study has of course gone through the rigorous peer review process of these publications and their editorial boards.

“Here are a few highlights from the medical literature:

•    A total of 525 individuals have died using the law. 98% were white, 68% college educated, 88% enrolled in hospice care, 81% dying of cancer, 8% of ALS, 98% had health insurance coverage.

•    In 2000 investigators at the Department of Veterans, OHSU Center for Ethics and Providence Health System, a Catholic institution, studied thousands of deaths confirmed the findings of official state reports and found no unreported aid in dying.

•    In 2001 investigators reported that Oregon physicians had responded to the new law by gaining knowledge in pain treatment, making more referrals to hospice and improving their ability to recognize depression among the terminally ill.  In 2001 51% of Oregon doctors supported the law and 17% were neutral. Most wanted the choice for themselves. Few had changed their minds, but of those who had, twice as many adopted a favorable opinion as unfavorable. Ten years later, I see that trend continue.

•    By 2002 routine tracking demonstrated the beneficial impact of choice on the quality of end of life care. Oregon’s rate of hospice use, percentage of deaths in home settings instead of hospitals and the quality of pain care all compared favorably with national averages.

•    In 2002 the NEJM published a remarkable study of how hospice nurses and social workers who cared for at least one aid in dying patient compared them to other patients. They reported that requesting patients dread the loss of control, independence and mental function more than their other patients do. Requesting patients are less likely to be depressed, anxious or in pain than their other patients. Family caregivers are more likely to find meaning in caring for their loved one, more prepared for the patient’s death and less burdened by their care than families of other patients.

•    Two studies have reported no disproportionate use by vulnerable populations. Oregon Advocacy Center, an agency that protects the rights of people with disabilities, has received no complaint in 14 years of attempted influence, coercion or misuse of the law.

“I could go on, because the stack of published papers on every aspect of Oregon’s aid in dying practice is very high.

“When journalists or others ask about opponents’ challenge to the validity this voluminous data set, I usually recommend they not take my word for the integrity of the data. I’m an advocate and one can always claim bias clouds my reading of these studies. Instead, look to the dispassionate and neutral observers, scientists who have examined the record from Oregon and the conclusions they reach.

•    One such is Professor Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania School of Medicine. Dr. Caplan holds the distinction of ‘most quoted’ bioethicist in America and for 8 years he carefully reserved his judgment about Oregon’s law. In 2005 he said, ‘I worried about people being pressured to do this…But [the] data confirms…that the policy in Oregon is working. There is no evidence of abuse or coercion, or misuse of the policy.’

•    Lawmakers in the state of Vermont told their Office of Legislative Counsel to conduct a thorough investigation of assisted dying in Oregon and the Netherlands. Delivered in 2004, the 46 page report concludes, ‘It is quite apparent from credible sources in and out of Oregon that the Dignity Act has not had an adverse impact on end-of-life care and in all probability has enhanced the other options.’

•    In 2007 the US Government Accountability Office, a research and watchdog arm of the federal Congress, prepared a report for the Senate on end-of-life care in 4 states. GAO’s only specific comment on aid in dying was a positive one, ‘Physicians are more comfortable discussing end-of-life issues with their patients since enactment of the Dignity Act, which focused attention in the state on end-of-life care and the options available to individuals: Passage of the Act helped create an environment where end-of-life issues are discussed more openly.’

•    Founded in 1872, the American Public Health Association, is the oldest and most diverse organization of public health professionals in the world. Its 50,000 members are epidemiologists, state health department officials, physicians, psychologists and other professionals. They are the people who guard our nation’s health. They take their charge seriously. In 2008 APHA completed a two year review of Oregon’s data set and its House of Delegates adopted official policy in support of similar laws. ‘The American Public Association supports allowing a mentally competent, terminally ill adult to obtain a prescription for medication that the person could self-administer to control the time, place and manner of his or her impending death…’

•    Perhaps most persuasive is an assessment from one who opposes aid in dying on moral grounds. In 2003 Professor Daniel E. Lee wrote in the Hastings Center Report, a prominent journal of bioethics, ‘I’m opposed to it, strongly opposed to it. I agree with Karl Barth that ‘it is for God and God alone to make an end of human life.’ Nevertheless, ‘…the arguments in favor of continued prohibition of physician-assisted suicide are not particularly compelling…we should not stand in the way of thoughtful individuals…who favor legalization.’

“I have the greatest respect for Dr. Lee and for the profound meaning and integrity of his personal beliefs. I respect him all the more for separating religious beliefs from the scientific record and refraining from imposing his religious doctrines on those who do not share them. I do not respect those who oppose aid in dying on religious grounds and distort the record from Oregon to enforce their religious tenets as the law of the land.

“Here are a few lessons we take from Oregon’s experience and data:

1.    Aid in dying is a safe medical practice. Professional standards of best practice have emerged. They are tested and validated in Oregon, then replicated in Washington. Further ‘laboratories of the states,’ are not needed.

2.    The purpose of an aid in dying prescription is to provide comfort and peace of mind, not to cause death. Every year a proportion of patients who go through the elaborate eligibility process die without ingesting their medication. This proportion varies, but has been as high as 53%, in 2001. Although it remains unused, medication has fulfilled its purpose. The patient has been empowered and relieved of the most dreadful of his fears. The purpose, then, is to lend substance to the fondest, final hope of us all — to die in peace, at home in the arms of those we love. The purpose is to improve the quality of life for a dying person. The purpose is not to cause death, for cancer or other fatal disease is already producing that end. Physicians may apply the doctrine of double effect, intending to comfort and treat the anxiety of their dying patients, knowing the medication may, or may not ever, precipitate the patient’s death.

3.    Doctors embrace practice guidelines, and as we have seen in Montana, normal procedures of professional peer review and medical regulatory mechanisms can govern the practice.

“Modern victories over disease have made dying more difficult, prolonged, agonized. For many, protection against the tortures of aggressive treatments at life’s end means that law and medicine shall honor their personal choice, control and free will.

“When we’ve built a set of values and beliefs over a lifetime it can feel like torture to have them wrest from us as our death approaches. Ronald Dworkin, the great constitutional scholar, said it best.