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The American health care system is undergoing a change in the way it cares for critically ill and dying patients. Palliative care is now more widely understood and practiced than ever before, according to the Last Acts coalition on end-of-life care.
"I graduated from medical school 14 years ago, and the word palliative’ wasn’t even on the radar screen, but it is now recognized as cutting-edge care. I think that’s quite encouraging," said Joseph Fins, MD, director of medical ethics and associate professor of Medicine at New York Weill Cornell Medical Center of New York Presbyterian Hospital during a Nov. 13 conference call with journalists, which was sponsored by Last Acts.
Legions of physicians are receiving training in palliative care, and expectations for better palliative care are also rising because of new exam questions for licensing of internists, new pain management standards required in hospitals, and new state laws allowing physicians to prescribe effective pain medication, Fins said.
There is even hope that restrictive Medicare and Medicaid regulations may be changed to improve access to palliative care. Joel Cantor, MD, professor of public policy and director of the Center for State Health Policy at Rutgers University, said the Medicare hospice benefit has come under recent scrutiny by the General Accounting Office (GAO) and the Senate Special Committee on Aging.
"Medicare’s focus on acute medical needs and curative care is becoming more widely acknowledged as a barrier to palliative care for the chronically ill and dying," Cantor said.
Religion, communication, and control take precedence over physical symptoms and functioning at the end of life for some terminally ill patients, Yale researchers suggest in a new book, which examines the complex issues surrounding death and dying.
"Our review proposes that quality of life is dynamic at the end of life and the components that make up quality of life may shift, making some more important than others, depending
on how close one is to death," says Elizabeth Bradley, assistant professor in the department of epidemiology and public health at Yale School of Medicine in New Haven, CT.
The research results are published as a chapter in Focus on the End of Life: Scientific and Social Issues by M. Powell Lawton. The book is part of a series by the Annual Review of Gerontology and Geriatrics, which examines and appraises current progress in research, clinical practice, and program development across disciplines from psychology, biology, and medicine to social issues and public policy.
The volume brings together the latest research on issues around death and dying, life’s attributes as it nears death, planning and preparation for death, and care and intervention-related issues.
"By focusing on quality of life at the end of life, the book re-orients us to the life, rather than the death, of terminally ill individuals," says Bradley. "Our chapter highlights some of the components of quality of life, such as religiosity, communication, and control, that have been less studied than physical symptoms and functioning, but may be particularly important as death becomes imminent."
In the chapter, Bradley and her colleagues note that much of the literature concerning religiousness and spirituality in the end of life implies that religious beliefs provide comfort, meaning, a sense of continuity, and a better quality of life for terminally ill individuals. In fact, recent efforts in the United States to improve the care of the dying invariably call for increased attention to the spiritual needs of patients.
"Efforts to provide answers to fundamental questions surrounding quality of life can help further shape clinical practice and research to benefit terminally ill patients and their families in the future," said Bradley.
Most physicians and nurses believe a recent jump in family reports of pain was due in part to increased family expectations for pain management, according to a study published in the December issue of the Journal of Palliative Medicine.
Researchers at Oregon Health Sciences University (OHSU) believe they have explained why family reports of pain increased in dying hospitalized patients in late 1997. The OHSU Center for Ethics in Health Care surveyed physicians and nurses about their opinions regarding the observed increase. Most respondents (79%) thought that more than one factor was at work in explaining this worrisome change.
According to the research, the vast majority (96%) of physicians and nurses believe the jump
in family reports of pain was partly the result of higher family expectations for pain management. Respondents reported that other significant factors included decreased physician prescribing of pain medications (66%) and reduced nurse administration of pain medication (59%). In addition, those respondents who thought physicians were more conservative in prescribing pain medications suggested the two main reasons were fear of investigation by the Board of Medical Examiners and the Drug Enforcement Administration.
"While this study does provide important information, it can only be considered one piece of an incomplete puzzle," says Susan Hickman, PhD, a senior research associate with the Center for Ethics in Health Care and lead author of the study. "We must continue to investigate the increase in family reports of pain and explore the reasons behind it. We also must make efforts to ensure that dying patients are receiving the pain medication they need."
This latest study follows a string of studies that showed disturbing increases in reported pain among dying patients. The increase in reports of pain was identified in a prior study conducted by OHSU’s center for ethics. Families of hospitalized patients in Oregon reported a jump in moderate and severe pain levels for their dying loved ones in late 1997. In late 1996 and early 1997, 33% of families reported that their loved one had experienced moderate or severe pain in the last week of life. In late 1997, this rate increased to 57%. This increase occurred in dying hospitalized patients only, not in those dying at home or in long-term care facilities.
"While Oregon is considered a national leader in pain management, the information obtained in this study reveals that there is more work to be done," says Susan Tolle, MD, director of OHSU’s Center for Ethics in Health Care and co-author of the study. "Our earlier findings indicated more pain in dying hospitalized patients. In this study, we learned that less pain medication administration was a partial contributor. We need to work on understanding the reasons behind reduced physician prescribing and decreased nurse administration to assure quality care for all dying patients."
Most of the people who asked Jack Kevorkian, MD, to assist them in suicide were not dying of terminal illness, but instead lacked family support and suffered from depression, says a new study. It suggests that the retired pathologist acted callously by facilitating the suicides of patients who were not able to make rational decisions.
For the past two years, Kevorkian has spent his time in a small prison cell in Jackson, MI, where he is serving a 10- to 15-year sentence for a second-degree murder conviction that resulted from an assisted suicide that was broadcast on the TV show 60 Minutes.
The image of Kevorkian as a strange but good-hearted crusader differs from his practices, say the study’s authors, which include the Oakland County, MI, medical examiner, L.J. Dragovic, MD. The results of the study were published in the New England Journal of Medicine.
"There has been a major discrepancy between what the public saw and what he actually did," Dragovic says. "They never really got to see who this man was."
Dragovic and his co-authors studied the autopsies and medical examiners’ files in all 69 suicides in which Kevorkian assisted in Oakland County. Kevorkian is thought to have assisted in 21 more suicides in other counties, but the authors felt data from those areas might be inconsistent.
The study found the following:
• Seventy-five percent of those assisted by Kevorkian otherwise would have lived for at least six more months.
• Seventy-two percent of them had recent declines in health, such as a new symptom or slightly more pain, that may have clouded their judgement.
• Sixty-seven percent were divorced, widowed, or had never been married, a strong indication they had no social or family support.
• Only 35% of them were in pain.
• Five people had no evidence of disease, suggesting mental distress drove them to Kevorkian.
• Seventy-one percent were women.
The authors then compared Kevorkian’s assisted suicides with those in Oregon and Washington state, where assisted suicide has been permitted. In those states, most patients who committed assisted suicides had been expected to die within six months, and most were male. The two states prohibited assisted suicide in patients with depression or recent declines in health, saying both factors impaired the ability to make a rational decision about death.
One of the authors, Donna Cohen, PhD, professor of aging and mental health at the University of South Florida in Tampa, says the contrast between Kevorkian’s patients and those in Oregon and Washington demonstrates the importance of having a comprehensive system in place to deal with assisted suicide.
"He became a model for what might happen without guidelines and practice," she says. "This confirms what many had suspected, which is that a single man who was a messenger for the right to die wasn’t employing clinical safeguards. He wasn’t protecting vulnerable patients, many of whom were women."
The Oakbrook Terrace, IL-based Joint Commission on Accreditation of Healthcare Organizations (JCAHO) created the Ernest A. Codman Award in 1996 to recognize health care organizations for achievements in the use of process and outcome measures to improve performance and care. Codman has been regarded as the father of outcomes measurement in health care.
Awards are given in a number of organization categories, including home care, a category that includes hospice and home medical equipment. In order to be eligible, an organization must hold a status of Accreditation with Recommendations for Improvement or better.
A home health agency also must have been surveyed under the home care standards in its most recent JCAHO survey.
An application form for the award will be available on the JCAHO Web site beginning in early 2001. The entry fee is $295. An evaluation committee of national experts in performance measurement will judge entries. Finalists are subject to an on-site visit conducted by a JCAHO surveyor and office staff member who review the organization's work and validate the information in the application.
Based on the application and the on-site review, the evaluation committee makes recommendations for awards to the executive committee of JCAHO's board of commissioners. Winners are notified in August and honored in October at an awards program in Chicago.
For more information on the Ernest A. Codman Award, call JCAHO at (630) 792-5000 or visit the organization's Web site at www.jcaho.org.