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Loss of self, dignity cited
More than six out of 10 people who are HIV-positive say they would seek euthanasia or physician-assisted suicide if their disease led to dependency on others or loss of dignity, according to a new study published in the Aug. 3 issue of The Lancet.
Researchers from the Joint Center for Bioethics at the University of Toronto interviewed 32 HIV patients who participated in the HIV Ontario Observational Database from November 1996 to June 1998 about their feelings on euthanasia and assisted suicide. The researchers asked the patients under what circumstances they might consider either practice.
Sixty-three percent of participants said they would pursue euthanasia or assisted suicide as a means of ending their lives, while 9% said they had rejected the idea, and 28% remained undecided.
Many of those interviewed said physical deterioration led to dependency on others, a condition most found "intolerable." Respondents told researchers that they wanted maintain a sense of dignity, which would be undermined by a loss of community resulting from reduced mobility, exclusion and alienation by others, the patient’s own isolating actions, and a fear of rejection.
These factors combined to give patients a feeling that "their fundamental nature or essence had been irrevocably eroded, or that this was at risk of occurring," the study authors state. Participants determined that euthanasia and assisted suicide were a means of limiting the feeling of loss of self.
Physical disintegration and loss of community — the progressive diminishment of opportunities to initiate and maintain close personal relationships — combine to give HIV patients a feeling of "loss of self" that contributes to their desires for euthanasia or assisted suicide, researchers said.
Factors that lead to a feeling of loss of community, such as "disownment" by family, stigmatization, and histories of drug and/or sexual abuse, suggest that the decision to pursue euthanasia or assisted suicide could be altered if "meaningful changes in individuals’ social circumstances" were made, "independently from disease progression," the authors note.
Because guidelines governing euthanasia or assisted suicide policy are created mainly within the doctor-patient relationship, they might "obscure the role" of these "broader social influences," researchers concluded.
In an accompanying commentary, Anthony Back and Robert Pearlman from the University of Washington in Seattle point out that these findings have important implications for clinicians and policy-makers.
"For clinicians, this work is a kind of road map into the world of a person with a life-threatening illness who is considering physician-assisted suicide," Back said. "The complexity of loss of self suggests why simpler explanations, such as pain, depression, or high-control personality, each fail as individual explanations for the desire for assisted suicide. This complexity underscores the need for clinicians to consider the evaluation of
a request for physician-assisted suicide as an important clinical skill."
Researchers note that policies asking clinicians to make judgments about whether a patient has intolerable suffering do not address the loss of community described in this study.
"What they do not point out is that policies requiring clinicians to decide whether a patient has suffered enough, or has lost enough, or is isolated enough, are judgments that cannot be captured neatly in policy guidelines," the commenters wrote.
"What policy-makers could do in responding to physician-assisted suicide would be to require that availability of reasonable palliative care be taken into account in any patient’s decision-making process about assisted suicide. Such a requirement could set a benchmark standard for palliative care that would be useful in the USA, where expert palliative care is not reliably available. However, even discussing policies that presume that physician-assisted suicide is allowable in some circumstances is enough to push more than a few hot buttons."
Health system the publisher
For many people, dying and death are uncomfortable — even frightening — subjects. But a new book aims to help ease the fears of those who are dying as well as their caregivers and loved ones by simply educating them about the process of death.
The Guide to End of Life Issues discusses all aspects of the dying process. The book explains the terms that accompany a person’s final stages of health care, such as "life-enhancing care" and "life-supporting treatment." It also includes guidance on the creation of a living will and durable power of attorney for health care.
The book was published by Alexian Brothers Health System in St. Louis using a grant from The Incarnate Word Foundation, also in St. Louis.
The book deals directly with the difficult issue of withdrawing life support from a loved one. Other topics covered in the book include pain management and the use of alternative medicines, such as aromatherapy and acupuncture.
A "Patient Bill of Rights" emphasizes the dying person’s rights to respect, dignity, compassion, and honesty.
The publishers of the book say they hope the book will help individuals and their families identify and achieve their own end-of-life goals in harmony with their personal, cultural, and spiritual understandings.
"Now that medical technology offers us so many ways of prolonging life, making decisions at the end of your life has become even more difficult. What’s more, the process of dying runs into complications when people carry expectations with them of how they will die and what meaning there is in their death," says Mike Roth, chief executive officer of Alexian Brothers Sherbrooke Village and Alexian Brothers Lansdowne Village, which are long-term care facilities operated in St. Louis by Alexian Brothers Health System.
The book will be distributed through Alexian Brothers Health System facilities and programs, other hospitals and health care facilities, the State of Missouri Department of Social Services, churches, hospice programs, and bereavement support groups.
For more information about the book or to obtain copies, contact Alexian Brothers Community Services at (877) 4-ALEXIAN.
Better end-of-life care needed
The American College of Physicians (ACP), the nation’s second-largest medical organization after the American Medical Association, has joined the AMA in officially opposing physician-assisted suicide.
In a paper published in the Aug. 7 issue of the Annals of Internal Medicine, the 90,000-member organization said it believes doctors should always look for ways to improve care for the dying.
"We must solve the problems of inadequate care at the end of life, not avoid them through practices such as assisted suicide," said Daniel Sulmasy, MD, an author of the paper.
Providing more and better care for pain and suffering, treating depression more aggressively, and increasing access to hospice care are essential to help terminally ill patients die more comfortably, the paper said.
Assisted suicide would damage the patient-physician relationship, jeopardize the medical profession’s role of healing, and lessen the value placed on life, the paper said. But it also emphasized the group’s strong support for a patient’s right to refuse or halt treatment.
Besides the AMA, the paper also puts the ACP in consensus with the American Nurses Association, the American Geriatrics Society, and a host of other medical and religious groups. The AMA expressed its opposition to physician-assisted suicide in 1993.
It is only necessary for one to "take a look at Dr. Kevorkian’s victims" to see that physician-assistant suicide should not be an option, said Richard Corlin, MD, AMA president. "You see not just people in the last stages of a terminal illness; you see people who are suffering from chronic depression, people with arthritis, multiple sclerosis," Corlin said. "They’re in pain [but] would clearly benefit from the better use of pain medications, the better use of psychological support, and the involvement of family in their care."
In a right-to-die case expected to have national repercussions, the California Supreme Court has ruled that family members cannot withdraw life-sustaining medical treatment from a conscious but severely brain-damaged loved one unless they provide "clear and convincing" evidence that they are acting on the patient’s wishes.
The 6-0 ruling in August stems from the case of Robert Wendland, a Stockton, CA, man who was severely brain-damaged in an auto accident in 1993 that left him severely disabled. As a result of the accident, Wendland was unable to talk, walk, eat, or express his wishes. Saying that he would not have to wanted to be kept alive under such circumstances, Wendland’s wife wanted to remove his feeding tube, while his mother wanted to keep him alive. Wendland died of pneumonia before the court heard his case.
The decision still allows life support to be removed in cases where the patient is unconscious, even if the patient has not clearly stated his or her wishes. Wendland did not fall into that category because he was considered "minimally conscious, capable of responding to simple commands but unable to communicate."
The ruling, issued by Justice Kathryn Werdegar, stated that unless patients in cases similar to Wendland’s have left "specific written instructions or designated a surrogate decision maker, their legal conservators may not remove life-sustaining tubes without clear and convincing’ evidence that they would have wanted to die or that death would be in their best interest."
Werdegar cited a new California law that, she said, "gives competent adults extremely broad power to direct all aspects of their health care in the event they become incapacitated.
"Only the decision to withdraw life sustaining treatment, because of its effect on a conscious conservatee’s fundamental rights, justifies imposing a high standard of proof. The decision to treat is reversible. The decision to withdraw treatment is not," Werdegar wrote.
There are concerns that the decision will have a profound effect on thousands of Alzheimer’s and stroke patients who are conscious but unable to express their wishes. Susan Penney, a lawyer for the California Medical Association, told the Los Angeles Times that the decision "will result in a lot of futile medical treatment that in all probability the patient would not have wanted."
Jon Eisenberg, an Oakland attorney who filed an amicus brief on behalf of 40 medical ethicists supporting Wendland’s wife’s position, said the ruling meant that "if you want to have a say in your end-of-life decision making, you’d better put it in an advance, written directive. The problem here is, I don’t know how you do that in a manner that covers all of the possibilities."
A study conducted and sponsored by the Rochester (NY) Individual Practice Association and BlueCross BlueShield of the Rochester area found that less than 10% of home care patients with chronic diseases such as heart failure have advance directives and that, in general, people are not being referred to hospice care early enough.
Results showed that 40% of referred patients died within one week of admission. The survey also found that the majority of institutions ask patients at the onset of care about advance directives.
The Rochester Community End-of-Life survey sampled 72 area hospitals, home care agencies, hospices, disease management programs, and skilled nursing facilities on such matters as advance directives, hospital referrals, and pain management.