But I have promises to keep, And miles to go before I sleep
– Robert Frost, “Stopping by Woods on a Snowy Evening”
Adesperate 30-year-old man with end-stage cancer decides to pursue aggressive treatment even against expert medical advice. As a result, his last days become a succession of dashed hopes, angry frustration, and increasing suffering. A 78-year-old woman with Alzheimer's disease lies in a contracted bundle, unaware of place and time. Her disease has absolved her of making end-of-life decisions, and her care now depends on the judgment of others. Both cases reflect the need to move beyond mere awareness of the need for improved care at the end of life to active implementation.
In 2004, the National Institutes of Health (NIH) sponsored a State-of-the-Science Conference on Improving End-of-Life Care.1 The purpose of these conferences is to identify areas that need more research, and past state-of-the-science conferences have generated discussion and served as catalysts for change. The panel of experts who examined end-of-life care at the 2004 conference concluded, not surprisingly, that improvements were needed. Their final statement focused on nine key points.2
CURRENT PROBLEMS, RECOMMENDED CHANGES
1. Circumstances surrounding the end of life are poorly understood, leaving many Americans to struggle through this life event. Most Americans are familiar with high-profile legal cases involving end-of-life issues. But many are still unprepared for making similar decisions regarding the end of their own lives, and, for a large number, events during this time do not go as expected or desired. A study cited at the conference showed that “most patients [with cancer] were willing to accept intensive chemotherapy for a very small chance of benefit … [and] much more likely to opt for radical treatment with minimal benefit than people who do not have cancer, including medical and nursing professionals.”3 A Gallup poll done for the Partnership for Caring showed that contrary to their wishes to die at home, most people die in hospitals.4
When faced with end-of-life decisions, even clinicians find benefit versus burden a difficult concept to judge. The many terms for palliative care—including comfort care, supportive care, and hospice care—are used interchangeably, further confusing the issue for patients and erecting barriers to care.
Though more research is needed, one speaker at the conference, Dr. David Casarett, said ethical considerations of the terminally ill patient's vulnerability and difficulties in obtaining consent have in the past limited research in this area.2 But Casarett, of the Center for Health Equity Research and Promotion at the Philadelphia Veterans Affairs Medical Center, has said such research would help define patient perception of risk versus benefit and capacity for decision-making.2
The NIH panel regards the work of educating practitioners and the public regarding end-of-life care as still unfinished. Medical professionals and the public alike can benefit from increased awareness of various issues. Research with this population is necessary to demonstrate and quantify that education goals are being practically applied and met.
2. The dramatic increase in the number of older adults facing the need for end-of-life care warrants development of a research infrastructure and resources to enhance that care for patients and their families.
By the year 2020, 35% of Americans will be older than 50 years.5 A major problem for many older terminally ill patients is that established dementia complicates end-of-life decision-making. One NIH panelist spoke of research involved with such patients.
Dr. Gregory Sachs, Chief of Geriatrics at the University of Chicago, praised the Palliative Excellence in Alzheimer Care Efforts, or PEACE, Program.6 Sponsored by the Robert Wood Johnson Foundation, the program enrolled 150 patients with various dementias and their caregivers in an attempt to integrate palliative care and multidisciplinary geriatrics care. The study outlined the stress placed on caregivers; those feeling strain at enrollment remained stressed despite referral to educational and support groups. The study also showed that 97% of patients and 93% of caregivers in the PEACE project rated the program care as the best possible. Further study is needed to determine which caregivers are at greatest risk for distress and what interventions may be appropriate.
A recent study by Aminoff and Adunsky confirms the conference panel's suggestion that research involving patients with dementia at the end of life is valuable.7 This study points out the paucity of clinical evidence regarding suffering in dementia patients, who cannot communicate their needs, understand treatment options, or express suffering. This may account for inappropriate evaluation or lack of palliative treatment.
Aminoff was also an author in a study presenting a tool for assessing suffering in dementia patients, the Mini Suffering-State Exam (MSSE).8 This test evaluates 10 items relative to a patient's condition as observed by caregiver staff or family, including pain, decubitus ulcers, agitation, and malnutrition.8 The MSSE score is then supplemented by clinical data such as laboratory test results, presence of a feeding tube, fever, or the use of antibiotics.8
The NIH panel concluded that financial cost and burden to the patient, family, and health care system should be assessed and provisions made, as the cost-effectiveness of interventions will be an important factor in determining whether they can be implemented now or in the future.2 This information will be critical as America's ging population reaches the end of life.