Compassion in Dying, Issue 5
Compassion in Dying is a nonprofit organization created to support the right of terminally ill patients to choose to die without pain, without suffering, and with personal assistance, if necessary, to intentionally hasten death.
Oral Arguments in the case of Quill et al. vs. New York were held in the Second Circuit Court of Appeals in New York City on September 1. Representing the three terminally ill patients and the three physician plaintiffs were attorneys Kathryn Tucker of the Seattle-based firm of Perkins Coie and Carla Kerr of the New York firm of Hughes Hubbard and Reed.
This is the federal case through which Compassion is testing the constitutionality of the New York laws which prevent physicians from prescribing lethal medications for mentally competent terminally ill patients who voluntarily wish to hasten impending death. The New York laws prohibiting such assistance are virtually identical to those in Washington State.
When this case was first heard at the District Court level, Judge Thomas Griesa rendered a decision close to the views of the U.S. Catholic Conference and the National Right to Life Committee, a decision which we appealed to the Second Circuit Court of Appeals. Most importantly, it appears from their records that the three judges chosen to hear this case are judges of excellent reputation. Judge Guido Calabresi, appointed last year by President Clinton, is the former Dean of Yale Law School and is considered a brilliant constitutional scholar. Judge Roger J. Miner is considered a thoughtful conservative and was appointed in 1985 by President Reagan. Judge Milton Pollack is one of the senior judges in the Circuit, having been appointed in 1967 by President Johnson. None of the three are known to be Roman Catholic or have a personal moral or religious bias on this issue.
If a majority of these judges upholds a constitutionally protected right of terminally ill patients to seek help in hastening death in order to avoid intractable suffering, it will open access to a humane death to terminally ill patients in the three states covered by the Second Circuit. Such a decision will also have a significant impact on other federal courts and the future of the death with dignity movement in America.
The Ninth Circuit Court of Appeals has voted to reconsider en banc the previous decision by two of their number in the case of Compassion in Dying et al. vs. Washington State. This is one of two cases through which Compassion is testing the constitutionality of state laws which prohibit physicians from assisting dying patients to voluntarily hasten impending death in a humane manner.
The rehearing has been scheduled for 1:30 pm on October 26, 1995, at the United States Courthouse in San Francisco. Eleven Ninth Circuit judges will participate in the reconsideration. This will be the largest panel of judges ever to hear any case on the rights of terminally ill patients to control the manner and timing of their death.
A majority of the 25 Ninth Circuit judges who voted in favor of a rehearing obviously believe that the question of whether terminally ill patients have this option is an important constitutional issue. The en banc rehearing is an important advance in the plan of our National Litigation Project to bring a case on the constitutional rights of terminally ill patients to the U.S. Supreme Court.
An en banc review is very rare, granted in less than two percent of the cases in which it is requested. We believe this action is a silent rebuke of the decision by Judges John Noonan and Diarmuid O'Scannlain last March, in which the personal moral and theological bias of Judge Noonan was so apparent. It may be only a coincidence, but the four federal judges who have thus far refused to recognize the right of terminal patients for medical help in hastening death are members of the Roman Catholic faith. The federal judges who have supported that right are either Protestant or Jewish.
The en banc rehearing may also signal that the landmark decision of first impression by District Court Judge Barbara Rothstein, recognizing that terminal patients have a protected right to choose physician assistance in dying, was based on sound constitutional principles.
The ringing dissent of Ninth Circuit Judge Eugene Wright against the views of Noonan and O'Scannlain probably carried considerable weight in gaining reconsideration. Judge Wright is the most senior judge on the Circuit. He has said, "I dissent rarely, seldom more than once a yearand then only for good reason." The majority of his dissents have later been upheld by the U.S. Supreme Court.
A decision by the Ninth Circuit upholding the original result in the Compassion case will, in essence, invalidate the laws prohibiting physician assistance with the voluntarily hastened death of terminally ill patients in all states in the Circuit: Alaska, Washington, Oregon, Montana, Idaho, California, Nevada, Arizona, and Hawaii. It will then be up to the state legislatures to pass new laws setting guidelines and safeguards for how patients exercise this right, but the legislatures may not deter patients who wish to make this choice.
By Michael Rothenburg, MD
I've been a doctor for over 40 years, and I've always been struck by the hypocrisy with which most of my profession deals with the subject of death. When I was a medical student, death was presented by most of my teachers as the "enemy" whom we must learn to defeat. I never heard about death as an integral part of life. I was taught, explicitly and by example, that doctors never talked about death to dying patients or to their families. But at the same time, I observed my teachers writing orders for "morphine around the clock," in increasing doses, for dying patients in the hospital. These orders followed brief talks with the patients' spouses and/or children, the talks dominated by phrases such as "We've done all we can." and "He's suffered enough, don't you agree?" I never heard an open discussion about hastening the inevitable death of a terminally ill patient who was suffering greatly, but I knew that "morphine around the clock" was doing just that. I quickly learned that a conspiracy of silence surrounded the common practice of physician aid-in-dying for terminally ill patients.
Today, that conspiracy of silence still lies behind the position of organized American medicine, which officially opposes physician aid-in-dying, while many individual doctors of good conscience and great courage allow themselves to respond to the pleas of their patients for release from unendurable end-of-life suffering.
I think the roots of these hypocritical practices lie both within and outside of the medical profession. The pressures and competitiveness of medical training deliver an unspoken but persistent message that the doctor should be omniscient and omnipotent. And this gives rise to an unconscious but powerful need to be in control at all times, whatever the emotional and physical cost to the doctor or the patients. Most doctors have been trained to believe that they have failed to control and defeat their enemy, death, when a patient dies. This accounts for many doctors' unwillingness to allow patients and their families to make their own final decisions in end-of-life issues. And this same urgent need to be in control, expressed as, "Don't tell me how to practice medicine!", accounts for doctors' automatic resistance to any organized attempt to codify the treatment of terminally-ill patients, through either legislative rules or patient rights.
Outside the medical profession, major changes in our society since the turn of the century have altered many perceptions about death and dying, and about the role of doctors. Only our oldest generation remembers death as a natural part of the life cycle, occurring in one's own home, with one's family--and family doctor--close at hand. Seriously ill people went to a hospital only as a last resort, fearful of its reputation as a death house. The burst of economic prosperity and medical advances generated by World War II gave rise to huge, complex medical centers, built around university schools of medicine. The hospital became a house of hope, and doctors seemed capable of dispensing medical miracles. Society also came to see death as defeatable, and patients looked to doctors to make the right medical decisions on their behalf from the welter of promising choices. This, in turn, reinforced the unrealistic expectations fostered during medical training that physicians be omnipotent and omniscient.
How can end-of-life decisions be brought out into open discussion, with a cooperative effort to focus on the values and needs of the individual patient? How can physician aid-in-dying emerge from the cover of silence, secrecy, and hypocrisy? Our society and our doctors both need to regain an understanding of death as the natural end of the life cycle, instead of treating death as the enemy to be conquered at all costs. Each one of us can contribute to this effort by letting our own doctors and family members know how we feel and what we expect during our end-of-life care, and by participating in educational, legal, and political efforts to help our society adopt a humane and rational attitude towards death and dying.
Over the two years of Compassion's functional operation many of our members have had considerable experience with dying patients. From this experience we can generalize somewhat about those who seek and are eligible for our help. Medically, they are, and must be, terminally ill. By definition, this means less than six months to live, based on best medical judgment. The great majority of patients have had cancer or AIDS, but some have had terminal pulmonary or neurological illnesses.
These patients suffer physically in one or more ways. Fortunately, medical care has been effective in controlling pain in all but a relatively few cases, and many of our patients have received excellent care from home Hospice workers. However, comfort care cannot eliminate nausea, vomiting, loss of bladder or bowel function, shortness of breath, or the extreme weakness that most of these patients have.
All patients have suffered severe functional limitation, such as inability to walk, go to the bathroom without assistance, or even to eat by themselves. All these patients have accepted the help of others for months or even years, but inability to care for themselves or to engage in normal activities has become for them a form of indignity and burden that they no longer wish to endure or share with their loved ones. They do not accept the ideology that says that a dying person should stay alive and endure suffering as long as is possible, but view such suffering as an indignity to themselves and surrounding loved ones. They also reject the option of being drugged sufficiently to be unaware of bodily suffering.
These patients do not fear death, but the indignity of prolonged dying. They prefer to die at home, peacefully, with their loved ones, and want to avoid institutionalization, even in a Hospice. They often express a desire and determination to avoid progression to such a debilitated state that they can no longer control the time and mode of dying. They do not want to leave the burden of their dying to others. Above all, they do not want to linger in a semi-comatose state, or unconsciousness, as a painful burden to those they love. These are compassionate patients who love life, but not undignified life or prolonged dying. Those of us who have worked with them are constantly impressed with their regard for those around them and their desire to minimize the suffering of others.
By Barbara Coombs-Lee, RN, JD
Oregon's Death with Dignity Act (Measure 16) brings the option of physician aided dying to terminally ill people who are alert and capable and who make a rational, repeated request. The campaign debate focused on safeguards, slippery slopes, and the role of government in its citizens' intimate choices. The subject of money arose only infrequently, so it came as a surprise when I was interviewed for 60 Minutes recently, and Morely Safer asked me, "Isn't this all about money?" I didn't think so at the time, but since then I have thought about larger implications of the question.
In our culture there's a deep understanding that money is the currency of not only our material lives, but also our values and beliefs. "Put your money where your mouth is," is an oft cited admonition to get serious. But to say a political and moral debate is "all about money" is to imply that desire for money motivates only one side, and money puts the weight of its influence behind only ulterior, evil purpose. The truth is money inhabits much more territory than that.
It so happens that in classic fee-for-service medical plans the incentive of money and the professional imperative to intervene in nature's processes are perfectly aligned. This alignment of motive and imperative built a health care system that reliably promotes invasive care over conservative management, heroic measures over compassionate ones, and pursuit of futile intervention over peaceful and painless death. Enlisting technology to keep terminally ill people alive serves an ethical mandate, and it also pays.
One thing I've learned from many of the elderly people, especially women, who stop by our Right to Die office, is that they fear their failing bodies will soon be treated as mere commodities, traded and nourished to satisfy the system's appetite for technologic intervention and its accompanying charges. This they resent. And as if to prove the point, Drs. Gary Lee and William Perry, plaintiffs in the suit to block implementation of Measure 16, achieved standing in federal district court by virtue of the fact that if one of their terminally ill patients accelerated death, the doctors will no longer receive payment for services. Federal Court Judge Michael Hogan ruled that these physician plaintiffs may seek an injunction against the new law, because they would lose money if one of their suffering patients were allowed to hasten death.
Then there is the outrage expressed by other citizens, mostly middle-aged men. They regard as something akin to theft, a hospital's claim on their life's savings in exchange for services rendered in the prolongation of their dying. At numerous town meetings I have seen these men aroused to righteous indignation at the thought of the legacy they intend for their children's security, or their grandchildren's education, being appropriated by health care institutions, while they linger in an agonizing death.
And it appears that for some individuals, the way in which their money is spent is of crucial importance to the story and meaning, even the sanctity, of their lives. It was that important to Richard and Helen Brown, the ailing Fort Lauderdale couple who willed their $10 million fortune to the United Church of Christ and calmly chose a peaceful death together. In a letter to friends, they wrote, "We have the means to afford the best doctors, hospitals and around-the-clock home care to the end of our lives, but neither of us wants that kind of life. It would also consume a substantial part of our money, which through our will and through the mission work of our church is destined to help many young people throughout the world who may one day be able to help many more." The legacy, they wrote, "represents the final purpose of our lives."
Well, Mr. Safer, I guess for the Browns, at least, it really was all about money.
But where does that bring us with managed care and the implication that the right-to-die movement is in service to the managed care industry, encouraging death to replace care and save money? Any coercion or influence or contracting for a request for aid-in-dying is a felony under the Act, so I assume we're talking about some persuasion much more subtle than that. Under capitation, the most aggressive form of managed care, physicians are paid a set fee per patient per month, regardless of how much care they deliver. So the accusation is that physicians will recommend less care and spend less money on costly procedures so there will be more left over at the end of the year for themselves.
If this is a real problem, it is a problem for all of health care, and the added impact of aid-in-dying is not even a blip on the screen. End of life care, hospice, and comfort management, are not big money items, and there is practically no financial incentive to avoid them. Patients who ask for physician assisted dying have already exhausted all attempts at cure. And it's things like long term therapy with genetically engineered drugs, multiple organ transplants, and high dose chemotherapy with rescue bone marrow procedures that are the really pricey items. If people want to worry about under-utilization of medical interventions, let them worry about the one's that are potential cures, and the ones physicians might actually notice in their take-home pay.
I'm not worried that physicians will stop recommending aggressive care, because I understand the power of the "code of the profession" which Sherwin Nuland so vividly describes and warns of in his book How We Die. The "rescue credo" is deeply entrenched and often reinforced by both the mandate of professional standards and the force of peer pressure. An interventional imperative continues unabated because to treat is the nature, the very raison d'etre of countless institutions and almost every health care occupation. If the coming of capitation payment means that financial incentives are no longer in perfect alignment with medicine's cultural imperative, it should be viewed with relief, as the injection of some modicum of balance in the determination of rational treatment plans.
Perhaps I should have told Mr. Safer that although medical care for the terminally ill can be all about money for some, passage of the Death with Dignity Act means that for others, it can be all about Compassion.
In slightly over two years, Compassion has changed the legal and medical environment in which some dying patients may make their final choices. The organization has helped several thousand patients with information and counseling with which to thoughtfully consider their end-of-life decisions, and we have been personally present on a number of occasions when the patient self-administered medications to hasten inevitable death.
Our two constitutional challenges have stimulated countless professional and newspaper articles on decriminalizing medical assistance with hastened death. When one of these cases is upheld by the U.S. Supreme Court, thousands of dying patients will have an option very different from either medical abandonment or an undignified end.
However, even grassroots, volunteer-led organizations have inescapable expenses, and these are magnified by the costs of advocacy litigation. Our attorneys have donated countless hours of pro bono or uncompensated time, but still the costs of our cases will be well over $200,000. A few pioneering foundations have helped subsidize this work, but the vast majority of our income is in the form of small checks from about 3,000 dedicated contributors.
We must ask all our readers to join in this opportunity to improve the fate of thousands of terminally ill patients who seek to have life end in the same dignified manner in which it was lived. Thanks for your generous support for this important cause.
This article was provided by Compassion in Dying.