Volume 7, No. 1 SPRING 1998 ISSN 1079-2953

Choice In Dying Goes to Washington
CID Cosponsors Congressional Briefing

By Avram Zysman, JD, Program Associate

The debate on physician-assisted suicide has galvanized public concern about how people in America die. As we examine the treatment of people at the end of their life, we see that medical care at this crucial period of life is deplorably inadequate. The Institute of Medicine Report published last year [Approaching Death: Improving Care at the End of Life; National Academy Press, 1997] details how Americans suffer from inadequate comfort care and insufficient acknowledgment of their requests and needs. Although there are no easy solutions, it is clear that a problem exists and more national attention to how Americans die is seriously needed.

On December 9, 1997, Choice In Dying, joined by the Alliance for Health Reform and the Hospice Organization of America, hosted a briefing to highlight recent developments in end-of-life care and continuing concerns. The briefing also addressed the newly-introduced legislation called "The Advance Planning and Compassionate Care Act of 1997." Senators Jay Rockefeller (D-WV) and Susan Collins (R-ME) introduced the legislation, which is designed to strengthen the existing Patient Self-Determination Act and enhance the likelihood that patients’ end-of-life decisions will be honored. Senator Rockefeller moderated the briefing, and Senator Collins was the key speaker. In addition, the briefing featured several prominent activists.

The Advance Planning and Compassionate Care Act of 1997 is intended to amend titles XXVIII and XIX of the Social Security Act to expand requirements for health care facilities in regard to advance directives. In addition to requiring that advance directives be made a prominent part of patients' medical records, the bill mandates that individuals have an opportunity to discuss their treatment preferences with someone who has expertise in end-of-life decision-making. Further, the bill increases the portability of advance directives by assuring that any advance directive valid in one state be accepted in another state to the extent that the directive complies with the second state’s law.

The Advance Planning and Compassionate Care Act also requires the creation of a national information service about end-of-life care and specifies that the Secretary of Health and Human Services conduct a study and report to Congress about the feasibility of using a uniform advance directive throughout the country. Finally, the bill calls for demonstrations of new approaches to end-of-life care and measurements of the quality of that care.

Choice In Dying played a major role in educating congressional staff about the issues underlying this bill and, in the near future, will provide additional educational briefings for congressional staff. To assist with this education, the Project on Death in America (Open Society Institute of the Soros Foundations) generously contributed copies of the Institute of Medicine Report Approaching Death: Improving Care at the End of Life for everyone attending the briefing.

The briefing was introduced by Senator Rockefeller who spoke about the importance of this bill, stating that, when end-of-life issues are discussed, "too often it's Kevorkian-related. Most people in this country don't want to commit suicide whether they are healthy or not healthy, whether they have a terminal disease [or not]." He noted that it appears that people want palliative care, something that allows them to die in comfort.

Senator Rockefeller shared a moving description of the circumstances surrounding his own mother's death from Alzheimer's disease. His mother's physicians, he said, seemed to lack the skills and will to keep his mother comfortable, and they seemed uneasy about honoring her completed advance directives. The Senator said he and his three sisters had to force the hospital to release her "to her place where she had lived for 50 years, where she could be absolutely comfortable, listening to the Mozart, Bach and Handel that she'd loved all of her life." The doctor, he said, appeared unsure of what New York State law required for treating her in the hospital and at home, and that uncertainty marred the doctor-patient relationship. Senator Rockefeller remarked, "although it wasn't very likely that the Rockefellers were going to sue, clearly this had to be part of the doctor's mindset."

Senator Collins offered some statistical details about the terrible state of end-of-life care in our country. She reported that "while four out of five Americans state that they would like to die at home, studies show that almost 80 per cent die in situations where they may be in pain and may be subjected to high-tech treatments that merely prolong suffering." She noted that the desire for physician-assisted suicide is spurred by "concerns about the quality of care of the terminally ill, the fear of prolonged pain, the loss of dignity, and the emotional strain on family members." Such worries would recede and support for assisted suicide evaporate, if better palliative care and more effective pain management were widely available, Collins asserted.

Ira Byock, MD, immediate past president of the American Academy of Hospice and Palliative Medicine and one of the foremost experts on the use of palliative medicine at the end of life spoke about the need for palliative care. He agreed with Senator Collins that people's desire for physician-assisted suicide is driven by a lack of good care. "When a person's options have been reduced to suffering or suicide, the choice of suicide may be entirely rational, but it is all the more tragic." Pain management, Dr. Byock said, is relatively straightforward when compared to other routine procedures, and relative comfort can always be accomplished. "Twenty years of hospice practice has proven to me that dying does not have to be horrible. . .that pain and suffering can always be alleviated, not necessarily eliminated, but always lessened and made more tolerable." He observed that, when people are allowed to die in comfort around those they love, dying can be an important stage of life, offering "opportunities to complete relationships, to review one's life, to tell one's stories, and through the transmission of one's stories, have a sense of connection, leaving something of value to those that they love. There is a chance to heal with one's own past, a chance, finally, to explore the deeper meaning of life, which is an inherent part of the human condition."

Byock also set forth a three-step program to remedy America's crisis in end-of-life care. First, he said, we need high standards for end-of-life care based on the most effective and efficient practices used by hospice programs around the country. Second, we need to establish a system of measurement to show whether standards are being met for individual patients. Finally, we must create an oversight system to monitor end-of-life care. Byock argued that these steps will eliminate the restraints that the insurance industry has placed on hospice programs because of the industry’s concern about fraud and waste. Furthermore, such a quality assessment system will empower consumers to demand better treatment when care is inadequate, drive community leaders and legislators to improve care among people who are terminally ill, and form a basis for implementing new models of palliative care.

Charles Sabatino, JD, assistant director of the Commission on Legal Problems of the Elderly at the American Bar Association, summarized the current state laws pertaining to end-of-life issues. As CID members are aware, advance directive legislation is now a reality in every state. Sabatino highlighted new legislative initiatives to improve decision making for patients who have lost the capacity to make decisions. For example, 26 states and the District of Columbia now have surrogate legislation that provides for decision making for patients without advance directives.Twenty-nine states have new laws that prevent unwanted resuscitation by Emergency Medical Services. He also noted that several states are passing intractable pain statutes that protect physicians who use opiods to treat severe pain (see Choices newsletter, Winter 1997). Jack Gordon, president of the Hospice Foundation of America and former state senator from Florida, spoke about Medicare benefits. A member of the International Workgroup on Death, Dying, and Bereavement, Senator Gordon was extremely critical of the restrictions contained in the Medicare Hospice Benefit, and he advocated abolishing the six-month limitation placed on hospice care. He noted that this limitation is an arbitrary constraint, imposed not by hospice organizations but by federal legislation. Furthermore, he noted that life expectancy for people who are terminally ill is largely unpredictable. Finally, he condemned the limitation as immoral. He said, "It is an interesting policy for a government of the people to be concerned that something that they are paying for [is] making people live too long. When you look at the moral dimension[s]. . . , you find it odd that there would be anyone in the government who would even think of that." Gordon also emphasized the irrationality of the age restrictions, which are inherent to the hospice benefit. He pointed out that terminal illness is not solely a problem of people who are aged. For example, breast cancer is the biggest killer of women ages 35 to 55.

Lawrence J. O'Connell, PhD, president of The Park Ridge Center for the Study of Health, Faith, and Ethics in Chicago, spoke passionately about the basic human need for meaning at the end of one's life, and he talked about how modern medical treatments have deprived individuals of this meaning. "Spiritual inattentiveness, that is the neglect of human meaning-making in the face of dying and death, can and often does lead to the sad spectacle of medical technology run amok. The technology literally smothers the person and snuffs out every attempt to construct meaning near the very end of life. Tethered to machines and often in pain, persons in the United States are routinely denied the meaningful death that human dignity requires and that we, as a nation of caring citizens, should foster." The fundamental question about end-of-life care, he declared, is how to avoid this inattentiveness, while enjoying the benefits modern medicine offers. He expressed hope that legislation such as the Rockefeller and Collins proposal will help increase sensitivity to pain management, create standards of care that consider the importance of spirituality, spawn public discussion and increased information about spiritual care of people who are dying, and encourage an emphasis on palliative care for those at the end of their life.

Choice In Dying's executive director, Karen Kaplan, ScD, delivered closing remarks. Dr. Kaplan told the story of a man who called CID's counseling hotline at 2:00 a.m. frantic about a decision he was asked to make for his mother. Should he permit the insertion of a feeding tube? His mother had had a stroke and had made it clear that she would not want her life prolonged by such treatment. After Kaplan spoke with the caller for awhile, she realized that he did not actually know why the doctor wanted to insert the feeding tube, what his mother's prognosis was, or whether she was expected to make a good recovery. She advised the caller to return to the doctor with these questions. He later called back, greatly relieved, to tell Kaplan that his mother was expected to make an excellent recovery. The feeding tube would merely provide her nourishment during recovery and could be removed.

Dr. Kaplan noted that this story exemplifies one of the most significant problems in caring for people who are infirm and terminally ill: "a disastrous lack of communication among patients, families, and caregivers." She said that comprehensive legislation, such as "The Advance Planning and Compassionate Care Act," which requires that skilled professionals be available to talk with individuals about their end-of-life choices, would facilitate communication. She also remarked on the failure of consumers and caregivers to act together to improve end-of-life care. Public initiatives, such as Choice In Dying's "Break the Silence Campaign" and its program to provide congressional staff with comprehensive information to use when responding to constituent calls, will underpin the public's demand for improved care and foster improved communication.

The briefing concluded with a spirited question and answer session. Several speakers indicated that it was one of the most useful briefings that they had ever attended. The audience, who more than filled the briefing room, stayed until the very end - a fairly unusual occurrence for congressional briefings.

Choice In Dying members can take great pride in CID’s educational contribution to the development and introduction of The Advance Planning and Compassionate Care Act of 1997. Now the next step is to assure its passage in the Senate and in the House of Representatives. Contact Choice In Dying for more information that will help you contact your senators and representatives to urge their support for The Advance Planning and Compassionate Care Act of 1997.

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