Nearly one out of four older Americans say that either they or a family member have experienced excessive or unwanted medical treatment, according to the latest issue of The Gerontological Society of America’s Public Policy & Aging Report (PP&AR), which goes on to show that Americans strongly support holding doctors accountable when they fail to honor patients’ end-of-life health care wishes.
This PP&AR, titled “Advanced Illness Care: Issues and Options,” features 12 articles that present new ways of understanding the complexity of securing appropriate advanced illness care and the decision-making dilemmas it presents. It also provides a valuable benefit by reviewing specific programs, demonstrations, and tools that family members and providers can use in providing care to persons with advanced illness. These models are person- and family-centered, and preliminary evaluations find that they may be cost-effective as well. Support for the publication was provided by Compassion & Choices.
“It is important to ensure that patients and their wishes are what drive the health care system, particularly at the end of life,” said Daniel R. Wilson, the national and federal programs director for Compassion & Choices. “We were pleased to partner with The Gerontological Society of America to publish this issue of the PP&AR, which includes cutting edge writers and thinkers in the advanced illness and end-of-life field.”
Advanced illness is defined as the period of illness when functioning and quality of life decline and where the efficacy of continued treatment is open to both medical and ethical question. Yet, as illness becomes more debilitating, clinical interventions often become more frequent. Studies show that the average Medicare beneficiary with one or more chronic conditions sees eight different physicians each year. It is at this stage when the medicalization of health care tends to overtake and overwhelm the needs and wishes of patients themselves. Advanced illness, due to disease, chronic conditions, or disability, can happen to anyone at any age. However, the vast majority of people with advanced illness are older than 65.
“Recent experience and studies make clear that well-informed individuals and their families often choose less care, in less institutional settings, often resulting in improved quality of life,” state Robert B. Hudson, PhD, and Brian W. Lindberg, MMHS, in their introduction to the issue. “It has become clear that palliative care and hospice care are often not provided soon enough, and that in-depth conversations with persons with advanced illness can help articulate treatment and life-style preferences that the health care system has often ignored or missed.”
Among the discussion of new models and tools that have been developed in recent years to better address advanced illness dilemmas and decisions, Charles Sabatino, JD, the director of the American Bar Association’s Commission on Law and Aging, highlights more than a dozen resources for updating and codifying preferences. He lists these under four headings: getting the conversation going, comprehensive advance planning tools, guides focusing on certain illnesses or decisions, and advance directive registries.
The new PP&AR comes on the heels of a major report released by the Institute of Medicine this fall, which was titled “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.” Its findings demonstrated that improving the quality and availability of medical and social services for patients and their families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system.