A peer review committee will screen each member of the panel for qualifications, level of experience and ability to promote a careful and thorough decision making process. Panel members have volunteered to provide their services at no cost or at reduced fees in recognition of the importance of the work and Compassion's nonprofit status.
With energy, enthusiasm and keen know-how, Judith has in a short time brought together an active, dedicated board, built ties with the community to promote patient referrals and assembled a core group of professionals to serve clients in the greater Portland area. Her goal is to have Compassion counselors available throughout the state.
The document is distributed exclusively to physicians and pharmacists who are responding to a patient request under the Act and will not be published or distributed generally. It appears that this protocol will be the only set of recommendations available to physicians in the state.
Operating from our firm belief that no one should have to consider assisted dying because of inadequate pain medication, Compassion launched a national project to prompt professional consequences for physicians who fail to adequately treat pain and suffering in terminally ill patients.
Families tell Compassion how hard it is to get adequate narcotics to relieve pain completely. They are told such things as "Everyone must suffer some," or "We need to hold the line on narcotics because they are addictive." Ms. Lee told reporters that "The truth is that the 'proper dose' is the dose that is effective, not a lower one. Experts agree but doctors in practice haven't gotten the message."
The memorandum called for actions to "help our country move beyond discussing improved end-of-life medical care and toward real and immediate changes that will be apparent at the bedside." The mission of Compassion in Dying is to improve care and expand options, including that of assisted dying. Recent research and our experience confirms that effective pain medication, delivered in the quantity and frequency to relieve pain in terminal illness is frequently lacking.
Physicians perceive risk in prescribing narcotics, but rarely perceive risk in under treating pain and allowing their patients to suffer. The memorandum calls upon medical boards to change this balance of perceived risk and suggests seven specific strategies.
Since death frequently occurs as a result of treatment decisions, we believe that the patient himself or herself is the safest and most ethically defensible decision maker about whether suffering is tolerable and whether knowingly hastening death is acceptable.
The entire text of the memorandum is reprinted in this newsletter.
Hospices workers were asked to assist in the next step in Compassion's pain management strategy and identify cases where a dying person suffered unnecessarily. Compassion will advise and assist in the presentation of these cases to the medical board or other appropriate reviewing authority. The Medical Boards tell us they never hear of cases of inadequate pain treatment. Let's change that.
Anyone knowing of such cases should contact Kathryn Tucker at 206/323-1952, or email@example.com.
The purpose of this memo is to ask the Federation and its individual state members to help our country move beyond discussing improved end-of-life medical care and toward real and immediate changes that will be apparent at the bedside.
As you may be aware, Compassion in Dying is a national non-profit organization dedicated to improved care of the dying. As the organization that sponsored the recent U.S. Supreme Court cases Washington v. Glucksberg and Vacco v. Quill, we are particularly interested in protecting and expanding the available treatment options used by our nation's physicians.
We recognize that state medical boards are in a unique position to prompt improvements in the deplorable state of pain management for the terminally ill, and we know you are working to encourage adequate management of pain and suffering. We write, therefore, to urge you to take concrete steps to correct some faulty perceptions of many practicing physicians.
As was recently well documented, a disturbingly large percentage of hospitalized dying patients suffer unrelieved pain toward the end of their lives. Medical experts are virtually unanimous in their agreement that this percentage is far higher than it should be, given today's availability of appropriate pain medication and the knowledge of how to use it.
Yet many physicians believe that they risk disciplinary action if they employ high doses of opiates or other controlled substances in managing pain and other symptoms at the end of life. They also believe that if they under-treat pain, they risk no professional consequences.
This situation must be corrected, and your organizations are key.
Dying patients clearly have the right to adequate pain medication; this much was recognized by a majority of the Justices of the United States Supreme Court in the two cases decided in June 1997. In Justice O'Connor's words, "a patient who is suffering from a terminal illness and who is experiencing great pain has no legal barriers to obtaining medication, from qualified physicians, to alleviate that suffering, even to the point of causing unconsciousness and hastening death." A noted legal scholar has recently reiterated and discussed this very important point in a leading medical journal. And the American Medical Association advises that "physicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care. This includes providing effective palliative treatment even though it may forseeably hasten death."
We suggest that the following steps, if taken by each state's medical board, would address the imbalance of perceived risk and would prompt physicians to improve pain management for dying patients:
We strongly urge you to adopt some or all of these strategies as part of a concerted effort to improve the care of the dying. Compassion would be pleased to participate in any seminars that include education of board members or physicians about the responsibility to ensure adequate pain control for the terminally ill. Please feel free to contact Dr. Robert Brody or Ms. Kathryn Tucker, with your questions or concerns. We know you will agree that it is crucial to continue and broaden our dialogue on this enormously important matter.
Robert Brody MD
Kathryn Tucker JD
Director of Legal Affairs
Barbara Coombs Lee FNP, JD
www.compassionindying.org, which came on line in June 1997.
In addition to these electronic inquiries our staff responded personally to over thirty requests every week from patients, journalists, students and health care professionals. Each response includes a personal letter and a packet of information selected to meet the callers specific information needs.
November was the busiest month with 2,238 requests pouring into the Compassion office. With the clear trend being one of increased demand each month, it seems that our role in educating the public on the need for humane and peaceful alternatives at the end of life will continue to grow.
The first person known to have made use of Oregon's new death with dignity law (often mislabeled "assisted suicide") has died -- without any assistance and without committing suicide.
The man was a 56-year-old engineer and computer programmer named Ray Frank. He died peacefully Nov. 27 in a major Portland hospital, a textbook case of the law working the way it was intended. His story illustrates why Oregonians insisted -- twice -- on approving the state's historic Death With Dignity Act. It also illustrates two other important truths:
Ray was diagnosed in late October with a rampaging renal (kidney) cell cancer that had spread to his lungs. Even then he was having trouble breathing, and asked his doctor that very day about getting help in dying before his struggle for air became unbearable. His doctor talked instead about possible experimental therapy -- neither surgery nor radiation would do any good.
Oregon voters gave the Death With Dignity Act their second endorsement Nov. 4, by a 60 percent to 40 percent margin. By then, Ray had applied for the experimental treatment -- he didnt want to die. But he was ruled ineligible -- his cancer was too far advanced. He was not in pain, but he needed to know how bad his struggle for air would get. The panic of continual air hunger was already nearly intolerable.
Rays doctors acknowledged they could only do their best to keep him comfortable. He asked whether he was eligible for assistance in dying under the new Oregon law, and his doctor confirmed that he probably was: he was alert, mentally competent, not clinically depressed, under no outside pressure, close to death, and undergoing enormous suffering that challenged normal comfort care techniques.
However, when Ray asked his doctor whether he would help hasten Rays death, the doctor declined. Oregon's law allows but does not require physician participation. Under conditions similar to Ray's, and when numerous safeguards are met, an Oregon doctor is now authorized -- but not required -- to prescribe life-ending medication that the patient may then self-administer at a time and place of the patient's own choosing.
Ray enlisted a friend, Noranne Clayton, to help him commit suicide. He felt he was too weak and his need too urgent to find another, more responsive doctor with whom he would have to start his care all over again; he was not comfortable despite his doctors' efforts; and he could not bear the thought of what the struggle to breathe might be like in his final days. In this urgency and desperation he was typical of a small percentage of terminally ill patients nationwide -- those for whom comfort care is inadequate.
Shortly before Thanksgiving, Ray asked Noranne to buy him a shotgun. He said that when he was released from the hospital he planned to go home and kill himself. He said he wanted to take action while he still could.
"He didn't want to shoot himself. It might be painful, he knew it would be messy. He didn't want to do it, but he felt he was forced to," Noranne said. She called for help and was put in touch with Compassion in Dying, which is working in Oregon to provides counseling and advice for terminally ill, patients who seek the legal option of a hastened death under the states new law.
I called Ray on Nov. 22 with the goal of reassuring him about his options and dissuading him from a violent suicide. "Tell me why I shouldn't just blow my head off," he said. I told him that shooting was unreliable: maybe he would wind up in worse shape than he already was. But more importantly, his daughter and his friend Noranne wanted to be there with him at the end and hold him in their arms. They couldnt do that if he shot himself.
And thirdly, I told him that I would help him change doctors. I would find one who would take over his care immediately and treat all aspects of his condition, including helping with a hastened death if all else failed. He agreed to let me try, and later that day I referred him to Dr. Nancy Crumpacker, a well-respected oncologist who agreed to see him on an urgent basis.
Referral is not necessarily easy, even here in Oregon. The Drug Enforcement Administration has threatened to discipline any physician writing prescriptions under the Death with Dignity Act, and opponents of the new law have engaged in intimidation and harassment of the kind that can dissuade all but the most committed and courageous. Noranne had earlier called several doctors who refused her plea for help on those grounds.
Noranne called me on Sunday the 23rd. "You won't believe the change in Ray, how relieved he is," she said. "His mind is at ease, now that he knows there's an option. He's not talking about shooting himself any more."
Ray saw his new doctor on Tuesday the 25th and received both assurances and aggressive comfort care. Now with morphine to replace the drugs that had failed to ease Ray's desperate breathing, he experienced enough relief to plan Thanksgiving with his family.
However, on Wednesday the 26th Ray was readmitted to the hospital with further difficulty in breathing. In the presence of his family, he died peacefully on Thanksgiving evening.
Ray did not, in the end, hasten his dying. But if the Death With Dignity Act had not been there to reassure him that a way out of his suffering was available if he needed it, he very likely would have committed suicide.
Let's make these distinctions clear. Suicide is a violent, desperate act the dying might resort to when they feel trapped and locked in the torture chamber of their illness. It isolates the patient and leaves survivors shattered by guilt and anguish. Physician assistance in dying is the direct opposite, a key to the door of that locked room and a way to keep family and loved ones close during a most intimate time. Providing the key can prevent suicide, because it gives the suffering patient what Ray received: peace of mind about the final moments and the courage to go on living for awhile longer. As with Ray, most people will never actually need to use the key the law provides.
This is exactly how we intended the Oregon Death With Dignity Act to work. It permits not "assisted suicide," but assistance in dying. It is fitting that the first known use of the act illustrates how very different those two things are.
Barbara Coombs Lee is a co-author of Oregons Death with Dignity Act, and director of Compassion in Dying Federation.
B. Kirk Robinson
Mr. Robinson is President of Compassion in Dying Federation. He comes to this post with a long-standing interest in the issue of death with dignity. He served as President of Washington Citizens for Death with Dignity during the 1991 Initiative 119 campaign in Washington State and was the chief spokesperson during that political campaign. He is owner and CEO of The Robinson Company, a construction management firm.
Robert Brody, MD
Dr. Brody is Clinical Professor of Medicine and Family and Community Medicine at the University of California at San Francisco. He serves as Chief of the Pain Consultation Clinic, Chair of the Ethics Committee and Director of the Ethics Service at San Francisco General Hospital. A former hospice director, Dr. Brody teaches end-of-life care to students and medical residents. Recent professional articles include, "You Promised Me I wouldn't Die Like This!" with Dr. Timothy Quill, in the Archives of Internal Medicine, and a chapter on "Care at the End of Life," in Current Medical Diagnosis and Treatment.
Mr. Cook is a systems specialist, retired from The Boeing Company. He served as full-time volunteer for the Initiative 119 campaign and in 1993 was a founder of Compassion in Dying. He has served as Treasurer and Chair of the Governance Committee and has devoted untold hours to building the organization integrity of Compassion.
Ms. Cook is also a founding member and one who volunteered full time in the Initiative 119 campaign. She owns a home-based secretarial service. At Compassion Ms. Cook coordinates the case management team and represents the team on the board. She has been responsible for bringing many compelling patients stories to public attention, and assisted patients and families in becoming effective spokespeople for the cause of dignified death.
Ms. Dunshee is a Compassion founder, and has served as Executive Director of the Seattle AIDS Support Group (SASG) for over nine years. This organization is one of the foremost AIDS support organizations in the country, providing emotional support to persons with HIV and AIDS and to their families and friends. She served as President of Compassion during the pivotal years of growth and maturity from 1993 to 1997.
Lawrence Falkowski, PhD
Reverend Falkowski is an Episcopal priest and Rector of Holy Trinity Church in West Orange, New Jersey. He chaired the "Task Force on Assisted Suicide" convened by the Episcopal Diocese of Newark, which includes 123 congregations. The task force concluded that hastened death may be a morally appropriate choice for a Christian in compelling circumstances and assisting another in dying may be an equally oral choice. The 122nd Convention of the Diocese subsequently accepted the report and its resolution.
Hugh Gallagher, PhD
Dr. Gallagher is a well known scholar, writer and disability rights activist. A person with polio quadriplegia since 1952, Dr. Gallagher has fought for the civil rights of disabled people for almost 40 years. Dr. Gallagher is also one the world's foremost experts on the Nazi extermination program for people with disabilities. He is the author of By Trust Betrayed: Patients, Physicians and the License to Kill in the Third Reich. A prolific writer and commentator on a variety of topics, Dr. Gallagher most recently has concentrated on issues of medical ethics as they relate to disability.
Judith Gordon, PhD
Dr. Gordon is a licensed psychologist with a practice in individual, marital, and group psychotherapy with adults. She is also Clinical Professor of Psychology at the University of Washington, where she does clinical research and supervises graduate students. For many years she has conducted research, written, and trained mental health professionals in developing strategies for helping people change health risk behaviors.
Sylvia Law, JD
Ms. Law is Elizabeth K. Dollard Professor of Law, Medicine and Psychiatry at the New York University School of Law and Co-Director of the Arthur Garfield Hays Civil Liberties Program. Ms. Law's publications include a multitude of books, articles and chapters focussing on patients' rights and reproductive law and policy. Her latest book is Law and the American Health Care System. Ms. Law has written briefs and been instrumental in many of the landmark Supreme Court cases of our time.
William Wright, Mdiv
Reverend Wright is retired as minister in the United Church of Christ. He is active in Compassion's educational activities and has a continuing interest in tending to the spiritual needs associated with death and dying.