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A new study led by a researcher at the San Francisco Veterans Affairs Medical Center (SFVAMC) has found that most physicians whose patients request help in ending their life deal with these requests alone, absent any advice from or discussion with their colleagues.
Researchers interviewed 20 physicians in Seattle and San Francisco who had received at least one request from a terminally ill patient for help in committing suicide. The results, which were published in the March issue of the Archives of Internal Medicine, showed that half of the physicians had helped a patient end his or her life.
The most surprising finding is that doctors rarely discuss these often heart-wrenching suicide consultations with other physicians. "Most physicians who received these requests really dealt with them alone," says lead author Jeffrey Kohlwes, MD, MPH, assistant clinical professor at the University of California of San Francisco and physician in general internal medicine at SFVAMC. "They perceived an unspoken code of silence on the topic amongst their colleagues," Kohlwes says.
The doctors reported the most difficulty in coping with requests from patients who wanted to die because they felt their lives had lost meaning, not for reasons related to physical pain and suffering.
The researchers recommended that physicians who care for terminally ill patients take the following steps:
• Improve their skills in managing pain and suffering.
• Learn to watch for and treat depression.
• Strive to communicate openly and clearly.
Researchers also pointed to the need for the medical profession to support doctors by encouraging discussion of requests for help with suicide.
Although physician-assisted suicide is illegal in every U.S. state except Oregon, doctors who care for terminally ill patients receive suicide requests with some regularity. Some guidelines have been written to assist doctors in dealing with these requests, but there has not been much documentation of the different ways in which doctors handle suicide requests from their patients.
Aside from its illegality, the topic of physician-assisted suicide is considered taboo among physicians, a perspective that dates back to a passage of the Hippocratic oath that admonishes physicians to "give no deadly medicine to anyone if asked." A few of the doctors also said they were worried about becoming known publicly as the "local Kevorkian," Kohlwes says.
The isolation experienced by these doctors creates a heavy emotional burden, Kohlwes says. Four of the physicians cried during the interviews, a response that Kohlwes says "seemed more related to a lack of processing their actions rather than any regrets over their actions.
"Somehow, the medical community needs to create an environment where these physicians can discuss their decision-making process," he says, suggesting that physicians should try to avoid the moral debate over physician-assisted suicide and instead discuss the processes they use to handle these requests.
"Improving the professional dialogue will improve care, and hopefully obviate the need for many assisted deaths," Kohlwes says.
Although physical and psychological suffering were reasons many patients gave for wanting to end their lives, some doctors said patients frequently cite more existential reasons.
"Many terminally ill patients feel that their meaningful lives are over because they are no longer able to do the things they love, such as interacting with loved ones, being active, and generally being in control of their lives," he says. "Physicians reported that these existential cases were the most difficult for them to intervene in."
The doctors in the study who felt most comfortable managing this existential suffering favored open discussions with the patient and tended to view their discussions with the patient as a therapeutic tool rather than an avenue to some other intervention, he said.
The good news, says Kohlwes, is that most requests for physician-assisted suicide can be successfully handled by treating either physical pain or depression. "Most physicians we interviewed used these requests as a warning flag to aggressively treat a patient’s physical discomfort, and in many cases they felt this was effective," he adds.
Most doctors in the study reported treating their patients with antidepressants, which another study has shown to reduce terminal patient requests for suicide.
Physicians can involve additional people in the care of terminally ill patients to ensure their quality of life doesn’t deteriorate in their final days, according to a study by Mayo Clinic researchers. The study authors note physicians as a group may prolong end-of-life suffering with aggressive approaches to "cure" the patients’ underlying disease rather than acknowledging the time has come to provide the patient with palliative care services.
However, strategies can be implemented to reduce the suffering of a patient by orchestrating a multidimensional approach to helping ensure the quality of life at the end. The special article, done for the Mayo Clinic Cancer Center Quality of Life Working Group, appears in Mayo Clinic Proceedings.1
Before the 1900s, most Americans died at home, surrounded by their loved ones. Currently, as many as 60% will die in hospitals, and up to an additional 25% will die in health care-related facilities such as nursing homes. Physicians have had an ever-expanding role in the manner in which people die, with so many Americans dying in hospitals and other health care facilities.
"With modern medicine emphasizing genetic manipulations, high technology, and cure at all costs, we often neglect what was once the most sacred aspect of being a physician: alleviating suffering," the authors write. "Therefore, we contend that the approach to a person dying in the hospital must change from simply postponing death to focusing medical interventions on maintaining quality of life to the end."
The authors defined the term "quality of life" as the physical, psychological, social, and spiritual domains of health that are influenced by a person’s experiences, beliefs, expectations, and perceptions.
The Mayo Clinic authors conclude their article: "We believe that the principles that have been so successful in improving the quality of life for hospice patients must be adopted in hospitals and related facilities such as nursing homes so that suffering can be relieved where the vast majority of Americans continue to die."
1. Rummans TA, et al. Maintaining quality of life at the end of life. Mayo Clinic Proc 2000; 75:1,305-1,310. t
Despite feeling overwhelmed by demands on their time, Americans caring for sick or aging family members have a "tremendous thirst" for training and education, a new survey indicates.
"What we’re finding — and this is news for most medical companies — is that caregivers are really the people who make the decisions and buy the products, and they want help," says Paul Alper of Alper Associates in Charlestown, RI. Alper conducted a survey of 1,254 caregivers, which was released in March during the annual American Society on Aging conference in New Orleans.
Alper conducted the survey in partnership with three major caregiver organizations on behalf of clients who make or market health care products.
The median age of caregivers in the survey was 55, most of them women. More than half help with bathing and dressing, and 40% help family members with eating and going to the bathroom. Half are spouses.
Nearly two-thirds of those surveyed said they want training in use of products that help with incontinence, care of fragile skin, and bathing. And among those who have had some training, 65% said they want more.
The survey also found that 87% of caregivers are the primary decision-makers and buyers of health care products. "Too many medical-product companies think that the drugstore is their customer," Alper says. "In fact, caregivers — the people who buy and apply those products — are the real customers."
With a database of about 3,000 caregivers, Alper also will provide a report to the state of Florida to help planners learn more about caregivers and their needs. California is the only state with a comprehensive profile of its caregivers, he notes.
A new study conducted by researchers at Oregon Health Sciences University (OHSU) in Portland reveals that family decisions to remove life support that result in the death of a hospitalized loved one can cause high stress levels for as long as six months.
Specifically, researchers observed families in which dying patients were unable to voice their own decisions near the very end of life. Investigators affiliated with OHSU’s Center for Ethics in Health Care and the School of Nursing conducted the research, funded by the National Institute of Nursing Research, a component of the National Institutes of Health. Results of the study were published in the March/April issue of Nursing Research.
The researchers studied 74 family members who had recently experienced the death of a relative in one of four large hospitals in Portland. The doctors and nurses involved in the cases also took part in the study. Researchers focused on hospital deaths because decisions to start and stop life support more often occur in hospitals. In addition to family and caregiver interviews, family stress was measured through standardized questionnaires used to gauge emotional impact following a traumatic event. Stress levels were measured during two time periods. The first period was one to two months following death of a loved one; the second period was six to nine months after the death.
Stress levels of all families in this study were extraordinarily high, the study showed. Family stress was similar to reports from people who had survived ferry and construction disasters, and was twice as high as the stress reported by people who had lost their home to fire. In addition, while study families’ stress levels began to taper off, they remained high for as long as six months following the death.
While all study families reported high stress, for families of a loved one who had not provided a verbal or written advance directive, the stress levels following the death were far higher. In families that had verbal advance directives, stress levels were moderate after death. For families whose loved one had completed a written advance directive, stress was markedly lower.
Advance directives are instructions for care near the end of life previously given by a patient in the event that they are unable to communicate their own wishes in their final days. Currently in the United States, approximately 20% of adults have completed a written advance directive. In Oregon, the statistics are much higher. In another study of recently deceased Oregonians, 68% were reported to have a written directive.
For many family members who chose to remove life support from a loved one without a verbal or written advance directive, caregiver interviews revealed the decision often haunted them for weeks and months.
In contrast, many family members whose loved one had previously completed an advance directive reported a sense of peacefulness in doing the right thing. "It was all clear because we talked about it and it was all on paper," another study participant explained.
"This study shows that a lot can be done to not only improve care of a patient, but also to improve difficult end-of-life experiences for their family," says Virginia Tilden, RN, DNSc, FAAN, lead author in the study. She is professor of nursing at OHSU and is associate director of the school’s Center for Ethics in Health Care. "This research shows that advance directives can lift a tremendous burden from families at the time decisions must be made. Writing down your wishes so that your family members have a clear guide to follow near the end of life will reduce the stress on those you love."
In addition to the need for important family discussions, OHSU researchers note the role nurses and physicians play near the end of life. "While better communication within families can do a lot to relieve stress, the study showed that communication and support by doctors and nurses profoundly impacts the experience of families," says Susan Tolle, MD, one of the authors of the study and director of OHSU’s Center for Ethics in Health Care.
"Families emphasized the need for caregivers to be truthful about the possible benefits of life-sustaining treatments and not to offer false hope," she says. "Following family decisions to remove life support, it’s important for caregivers to support family decisions to reduce the long-term feelings of guilt."
Father Angelo D’Agostino, MD, is a Jesuit physician from Boston whose Nyumbani hospice in Kenya cares for 70 AIDS orphans but can only afford AIDS therapy for 12 of them. "I am sick and tired of funerals," he says.
D’Agostino has announced he will accept a recent offer of cheap antiretroviral drugs from the Cipla pharmaceutical company in Bombay, India, in spite of the threat of a confrontation with Kenyan patent law. His move comes amid growing pressure from organizations like Oxfam and Médecins sans Frontières on the drug industry, which they claim is keeping prices too high while many regions of Africa are being decimated socially and economically by AIDS and other diseases. It also comes as a controversial court battle brews between pharmaceutical companies and the South African government over generic drug importations.
The drugs nevirapine from Boehringer Ingelheim in Germany and lamivudine from GlaxoSmithKline (GSK) in London are two of the three drugs in the Cipla cocktail. They are covered by patent law in Kenya until 2010, but Boehringer-Ingelheim has already reduced the price of nevirapine by 80%, and GSK has announced price reductions of up to 90% in specific circumstances. These reductions will bring the price of the triple-combination AIDS therapy close to the $350 yearly cost per patient quoted by Cipla.
Jean-Pierre Garnier, CEO of GlaxoSmithKline, says he agrees with campaigners that more has to be done to make life-saving drugs available in the developing world.