NAAG Issues and Research
On November 10, the Hastings Center issued its report, ?Improving End of Life Care: Why Has It Been So Difficult?? The report is a collection of 10 essays by some of the nation?s leading experts on end-of-life care. The report notes that, although much progress has been made, there remains a gap between the legal and ethical framework of end-of-life care and the real world of decision-making by oftentimes anguished and conflicted family members. The report notes that only a minority (from 20 to 30 percent) of Americans has advance directives and that these have limited effects on treatment decisions. Among the recommendations are that there be a recognition of the collective responsibility of deciding the course of end of life care, approaching end-of-life care as a more collective and family-oriented manner; a re-evaluation of advance directives and surrogate decision-making to factor in information with which physicians are comfortable; and an improvement in the approach to managing conflict and disagreement. Attorneys general staff dealing with end-of-life issues may wish to download the report and make it available to others in state government tackling the policy considerations of end-of-life care.
NEWS FROM ATTORNEYS GENERAL OFFICES
Idaho Attorney General Lawrence Wasden recently announced the addition of information concerning living wills to his website so that Idahoans can use the form to assist them in ensuring their wishes concerning health care at the end of life are respected. As a result of changes made during the 2005 Idaho legislative session, there is a new form that acts both as a living will and as a durable power of attorney for health care. The website also contains a question and answer section that provides an explanation of the form and why it is important to execute such a document.
The U.S. Court of Appeals for the First Circuit affirmed the decision of a district court (Pharmaceutical Care Management Association v. Rowe, No. 05-1606 (Nov. 8, 2005)), which dismissed the lawsuit that had been brought against Maine Attorney General G. Steven Rowe. The lawsuit challenged the provisions of Maine?s Unfair Prescription Drug Practices Act and sought an order enjoining the Attorney General from enforcing the act.
Maryland Attorney General J. Joseph Curran, Jr.?s office prosecuted a nursing assistant at a nursing home in Westernport, Maryland, on one count of neglect of a vulnerable adult. The defendant pled guilty to removing a 72-hour pain patch from a nursing home resident and sucking out the medication. General Curran?s office has also charged a former certified nursing assistant for a nursing home in Cambridge, Maryland, with mistreatment of a resident in her care.
In a controversial decision, a Texas state district court judge has returned a young cancer patient to her parents? custody. Judge Jack Hunter determined that 15-year old Katie Wernecke would be better off with her family in Corpus Christi than in the custody of the foster parents she was assigned by Child Protective Services last June. She was removed from her parents? custody when they decided not to have her undergo radiation treatments.
The November 5th issue of the Washington Post reported that a House-Senate conference committee eliminated a provision from HR 2862 that would have given the Drug Enforcement Administration authority to review the sale of all new prescription narcotics. That provision was included in one of the appropriations bill last year.
The Subcommittee on Health, House Committee on Energy and Commerce, will likely take up consideration of HR 1020, establishing a National Pain Care Policy, early in 2006.
The New Hampshire House will be considering legislation that seeks to clarify state law covering living wills. It its current form, the proposed legislation, which was passed out of the House Judiciary Committee on a 15-5 vote, would provide rules and forms for people to designate someone to make health care decisions for them if they no longer can communicate. It also sets out requirements for advance directives to allow people to place conditions on their treatment if they become incapacitated.
The Vermont legislature is considering H.168, An Act Relating to Death with Dignity. Its stated purpose is to allow a mentally competent patient who is expected to die within six months to end his or her life in a humane and dignified manner by prescription medication.
AARP has posted an on-line guide to the Wyoming Health Care Decisions Act of 2005. This new legislation provides a simple and comprehensive form for residents to record their personal wishes.
OTHER DEVELOPMENTS OF INTEREST
President Bush signed a proclamation that recognized November as National Hospice Month. To kick off events, the National Hospice Foundation announced the receipt of a $100,000 grant from the Public Welfare Foundation. The funds will be used to improve resources and outreach to Hispanic populations in need of information on care at the end of life.
In response to a report from the Institute of Medicine highlighting the need for more and better data about care at the end of life, The Carolinas Center for Hospice and End of Life Care and The National Hospice and Palliative Care Organization have launched a web site offering easy access to data about decedents, care of the dying, and community factors affecting end-of-life care. Visitors to the EDELE Web site can search for data by topic then by state by using a set of pre-written questions that reflect common data needs or by an advanced search that allows combinations of criteria. The search returns a list of web pages, a picture of each page, and information about the data source, type and display (e.g., table, map, graph.) The Web site is the centerpiece of The EDELE (Epidemiology of Dying and End-of-Life Experience) Project and was designed by a National Advisory Board of experts in end-of-life care policy and practice, healthcare ethics, and health services research.
According to a Pittsburgh Post-Gazette article, a Pennsylvania state task force working on issues of decision-making and care for dying patients recently heard from people with disabilities who became alarmed at a June symposium of the Task Force for Quality at the End of Life in Pennsylvania that their concerns were not being met. The concerns of the disabled and those who advocate for them include access to equitable care, perceptions by others that disabled people?s lives are less valuable, and a lack of self-determination in planning their treatment. Underlying these concerns is a sense that physicians, relatives, and others would decide to end medical treatment of a disabled person more hastily than that person truly would want due to a judgment that their life is lacking in quality. The task force report is due in January.
The Royal Australasian College of Physicians recently released two sets of pain management guidelines- one for neonates and one for children and adolescents ? recommending a combination of pharmacological measures and behavioral techniques.
In Georgia, the week of November 7 to 14th was designated Georgia Health Care Decisions Week. The Georgia Department of Human Resources Division of Aging Services (DAS) encouraged Georgians to document their end-of-life decisions during that week. End-of-life forms are located at the DAS website. Georgia has established ?one-stop shopping? resource centers in Atlanta and Augusta which provide comprehensive help by connecting consumers to information about long-term care options both to those with developmental disabilities and to seniors.
A report issued in June 2005 by Canadian Senator Sharon Carstairs, titled ?Still Not There ? Quality End-of-Life Care: A Progress Report? highlights key areas that still need to be addressed in Canada regarding end-of-life care. The report includes recommendations in areas such as national strategy, patient and caregiver support, and training and education for formal and informal health care providers.
The October 2005 issue of the Journal of Palliative Medicine includes several articles on educating medical students on end-of-life issues. One article reports that researchers discovered that, out of 275 residency programs surveyed in Michigan, only 46 percent of them offered formal end-of-life care training and only 31 percent of the programs offered formal training in hospice care.
The current issue of the Journal of the Royal Society of Medicine has an article titled, ?Palliative Care in Non-Malignant Diseases.?
The National Institute for Health and Clinical Excellence, an arm of Great Britain?s government health-care system, has preliminarily determined that doctors should stop prescribing drugs taken to delay the worsening of Alzheimer?s. The determination was based on economists? finding that the drugs? benefit is not worth the costs.
The UC Davis Center for Health Services Research in Primary Care is using a $1.5 million grant from the American Cancer Society to find more effective pain management techniques. The new research effort aims to foster improved communication and a partnership between patients and their health-care providers.
A study recently published on PubMed, a service of the National Library of Medicine and the National Institutes of Health, found that there is both moderate/high- and low-quality evidence suggesting that long-term treatment with opioids can lead to significant improvements in functional outcomes, including quality of life, in patients with chronic, non-malignant pain. Titled ?Impact of Long-Term use of Opioids on Quality of Life in Patients with Chronic, Non-Malignant Pain,? the article?s authors concluded that further research is needed to confirm the long-term quality of life benefit of opioid treatment in these patients and to elucidate the effect of physical tolerance, withdrawal, and addiction on patients? functional status.
The Poynter Ethics Journal posted an article urging that every newsroom have a journalist versed in the language of life and death and dying. The article especially notes that journalists need expertise to keep up with changes in state laws and technology and the particular issues involving various terminal diseases and those involving special populations.
A commentary, published in the Brussels Journal, suggests that Europeans, which have a form of health care rationing already in place to keep public health programs afloat, may turn to euthanasia as a form of controlling costs.
The Initiative for Pediatric Palliative Care recently held an educational retreat for those interested in a faith-based approach to palliative care. The retreat was sponsored by Supportive Care of the Dying and the Footprints program at SSM Cardinal Glennon Children?s Hospital. The participants included medical professionals and parents whose children have faced life-threatening illnesses.
Ohio lawyers and health care providers sponsored a ?Plan Ahead Health Care Decisions Week ?05? the end of October and beginning of November. The program, held at various libraries throughout the state, was designed to help Ohioans better understand advance directives. Attorneys were on hand to help complete documents. A special focus was on college-age students who might not have thought about executing such documents.
Dr. Joseph J. Fins of New York Presbyterian Hospital/Will Cornell Medical Center is the author of a new book titled, ?A Palliative Ethic of Care: Clinical Wisdom at Life?s End.? The book offers practical advice on issues such as formulating goals of care in transitioning from curative to palliative care. It also offers an historic overview of end-of-life care in the United States.
In order to provide veterans in Wisconsin and northern Michigan with the best in end-of-life care, a hospice/veterans partnership was recently formed between Veteran Administration (VA) facilities and organizations in that area and state and local hospice agencies, according to an an article in the Phillips, Wisconsin, Bee. Hospice services can now be provided at VA facilities or at a veteran?s home.
ECRI (formerly the Emergency Care Research Institute) held a conference in early November discussing how evidence could inform policy and practice in treating chronic pain. A one-day pre-conference workshop addressed the challenges in examining the evidence for treatments of chronic pain and factors affecting access to treatments. It is anticipated that a CD-Rom will be made available covering the conference highlights.
A Danish study found that dying cancer patients may get better end-of-life care if their doctors give them a formal diagnosis of terminal illness. The key finding was that making the transition from curative to palliative phase explicit provides the primary health care sector, such as a community nurse, general practitioner, and other caretakers, with a possibility to plan the last weeks of life as well as providing the environment to discuss end-of-life issues with the patient and family members.
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