Compassion in Dying, Issue 9
The state of Oregon leads the way as the only jurisdiction in the world with legal, regulated assisted dying. And as it does so, it has its very own Compassion in Dying affiliate to assist with information, consultation and supportive personal presence for patients and families. Compassion will play a critical role in the responsible implementation and availability of the Act.
Compassion of Oregon is possible through the generous support of the Wallace Alexander Gerbode Foundation and the Oregon Death with Dignity Legal Defense and Education Center. These organizations provided the seed money grant to establish an office, bring in expert staff and develop a panel of mental health and end-of-life specialists to ensure that palliative needs are well met and decisions under the Act are voluntary, enduring and rational.
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.
Judith Fleming Leads Development
Ms. Judith Fleming heads the organization's creation and development, as Consulting Director. Ms. Fleming is no stranger to start-up endeavors. She comes to us from a career as senior executive in health care and related businesses, especially the development and credentialing of provider networks.
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.
In January, the first month of operation, Compassion of Oregon received 26 general inquiries and 10 from patients asking how to access the Death with Dignity Act. Compassion arranged referrals and assisted with the transfer of care from physicians who declined to participate in the Act to physicians who will include it in the range of options they are willing to offer. We have assisted in improving comfort care and mental health services and recommended therapies for a number of patients. Even for those who would not qualify under the Act, we have continued to be involved and help improve the quality of life.
Task Force on Life Ending Medication
The Task Force on Life Ending Medication was a joint project of Physicians for Death with Dignity and Compassion in Dying Federation. Composed of two physicians and two pharmacists, the task force prepared a report called "Life Ending Medication and the Oregon Death with Dignity Act," which includes information for physicians about medications to prescribe and instructions for patient self-administration.
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.
On January 12 Compassion in Dying Federation kept the heat on the medical community to improve end-of-life care with a well-publicized memorandum to each state medical disciplinary board and their association, the Federation of State Medical Boards.
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.
Experience at the Bedside
Compassion announced its initiative at a national phone-in press conference featuring Kathryn Tucker, Director of Legal Affairs, Barbara Coombs Lee, Executive Director, and Robert Brody, Board Member and Director of the Pain Consultation Clinic at San Francisco General Hospital. Ms. Coombs Lee told journalists that Compassion often receives calls from families who are struggling to control the pain of a loved one who is dying at home or in an institution.
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.
Outgrowth of Compassion's Supreme Court Cases
This project grew out of the ruling of the Supreme Court in Compassion's two cases, Glucksberg v. Washington and Vacco v. Quill. Although declining to recognize a right to assisted dying, the Court did recognize a right to adequate pain medication, even in quantities that may hasten death. We believe that pressing ahead to make this right a reality will relieve much end-of-life suffering. It will also heighten public awareness of the many end-of-life options available, some of which hasten death as the unavoidable consequence of relieving suffering.
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.
Building bridges to the Hospice Community is important to change society's attitudes toward relief of suffering and assisted dying. We have made strides toward that objective with Compassion in Dying's memorandum to state medical boards urging a changed attitude toward narcotic usage.
Rapid Email Responses
When word got out, hospices and their state associations were quick to see an opportunity to improve care in their states. Email messages flashed across the country exclaiming that this was "incredible information" and a real opportunity for smaller state organizations to build a relationship with the medical boards and attorneys general in their state. They exchanged ideas about how to "get the best mileage out of this" by sponsoring local symposia and approaching individual medical board members and inquire about their state's response.
Help to Find Cases
When we asked hospice organizations to help Compassion identify cases of inadequate treatment of pain at the end of life, the response was enthusiastic. Hospice News Network, an electronic news service for state hospice organizations published a front page report on our initiative. The article stressed our offer that Dr. Robert Brody, Compassion board member and Chief of the Pain Consultation Clinic at San Francisco General Hospital be available to consult with medical boards or physicians on pain management techniques.
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 firstname.lastname@example.org.
Federation of State Medical Boards and all State Medical Boards
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
Barbara Coombs Lee FNP, JD
The numbers indicate that 1997 was a busy year for Compassion. Inquiries for information about our organization and the services we provide averaged over two hundred per month, with a total of 12,378 for the year. Many people learned about Compassion at our Web site, 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.
As of January 1998 we moved our offices to Portland, Oregon and share office space with Compassion in Dying of Oregon. With the election won in Oregon, a move by the Federation to Portland seemed both possible and advantageous in order to assist in implementation there and promote growth of the new Compassion of Oregon. Compassion in Dying of Washington remains headquartered in Seattle.
By Barbara Coombs Lee
(Note: Ray Franks story appeared in the Portland Oregonian, and this commentary was published in two newspapers -- the Oregonian and the Daily Astorian)
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.
The Compassion in Dying Federation Board of Directors is a combination of Compassion in Dying founders and others based in Seattle, Washington, and those who are new participants and bring a national perspective. We'd like to take this opportunity to introduce each board member to our friends and supporters.
B. Kirk Robinson
Robert Brody, MD
Lawrence Falkowski, PhD
Hugh Gallagher, PhD
Judith Gordon, PhD
Sylvia Law, JD
William Wright, Mdiv
This article was provided by Compassion in Dying.