As the American population ages and dementia is on the rise, The Hastings Center is embarking on pathbreaking research to explore foundational questions associated with the dementia trajectory and the concerns of persons facing this terminal condition. This new research is made possible by a major grant to The Hastings Center from The Robert W. Wilson Charitable Trust as part of its visionary support for the Center’s research and public engagement on ethical challenges facing aging societies.
Principal investigators are Nancy Berlinger, a research scholar at The Hastings Center, and Mildred Z. Solomon, the president.
Dementia is an age-associated condition that typically spans four-to-eight years from diagnosis to death, although it may last much longer. Some brain changes associated with dementia can be identified before the onset of symptoms via biomarkers detected through neuroimaging or other tests.
During the dementia trajectory, a person experiences progressive impairment of cognitive abilities – including memory, problem-solving, and language – as well as changes in behavior and physiological functions. As cognition deteriorates, a person with dementia will need daily assistance and eventually total care, often in an institutional setting, for several years before physical deterioration progresses to death from pneumonia or another condition associated with severe dementia. There are no effective treatments to cure or halt the progression of dementia. Alzheimer’s disease, the most common form, is the sixth leading cause of death in the U.S. Vascular dementia, the second most common form, may develop following stroke.
In 2018, 5.7 million Americans were living with dementia. An estimated 12 million others will be at high risk for developing dementia over the next 30 years as the baby boom generation lives into their 80s and 90s.
In the U.S., the basic legal right to be free of unwanted treatment is long established. People with decision-making capacity have the right to forgo life-sustaining treatment they do not want. People who lack decision-making capacity have the same right through the use of an advance directive or a surrogate decision-maker. However, this longstanding legal framework and ethical consensus does not fully reflect the situation of a person facing dementia if this person has no medical treatments to refuse. Also, the timeframe in which a terminally ill person with decision-making capacity can request and use medical aid-in-dying (MAID), now legal in nine U.S. jurisdictions, does not correspond to the dementia trajectory.
“Bioethics, and The Hastings Center specifically, have articulated a lasting framework for medical decision-making in the context of serious illness and the end of life,” says Solomon. “It is time to focus on the dementia trajectory and explore unresolved questions of great significance to our aging society.”
Through literature review and workshops, a Hastings Center work group will conduct an ethical analysis of end-of-life choices in the context of dementia, identifying areas where further research or policymaking is needed. In exploring these emerging issues, the work group will also consider how the field of bioethics should contribute to research, policy solutions, and public understanding to improve the experiences of living with dementia and caring for people with the condition. Products will include a special report, to be published in 2021.
by Craig Klugman, Ph.D.
In 1983, NBC broadcast an alien invasion limited series calledV. In one episode, as the U.S. devolves into a tyranny, the military invades scientific labs and finds—inside the filing cabinets (it was pre-computer days)—cures for cancer and other diseases that were simply never released because companies made more money treating disease than curing it. From that 36 year old television image has come a modern reality—Pfizer may have a drug that improves the chances of preventing Alzheimer’s Disease, but they won’t pay for the clinical testing.
Enbrel is a $5 billion per year prescribed biologic medication approved in 1998 for rheumatoid arthritis.…
In contrast, once clinicians begin resuscitation efforts, they almost always can stop once they judge that stopping is clinically appropriate. Confirming the legality of this clinical discretion is a recent decision from the Ontario Health Professionals Appeal and Review Board.
The patient's wife and substitute decision maker complained to the medical board that the attending physician "did not request her permission to stop resuscitation during the patient’s cardiac arrest." The HPARB affirmed the board's decision to take no action given the urgency of the situation.
The protections of GINA play a key role in the decision of many of my healthy patients to decide to undergo genetic testing. My criticism is that GINA is unfair to people who might suffer discrimination in health. insurance for non-genetic reasons.
The report recommends:
- The Department of Health and Social Care, working with a range of agencies and the Royal Colleges to issue guidance for doctors that ‘learning disabilities’ should never be an acceptable rationale for a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) order . . . .
- Medical Examiners to be asked to raise and discuss with clinicians any instances of unconscious bias they or families identify e.g. in recording ‘learning disabilities’ as the rationale for DNACPR orders . . . .
- The Care Quality Commission to be asked to identify and review DNACPR orders and Treatment Escalation Personal Plans relating to people with learning disabilities at inspection visits. Any issues identified should be raised with the provider for action and resolution.
by Craig Klugman, Ph.D.
Last week, the World Health Organization (WHO) re-defined workplace burnout as a syndrome consisting of “feelings of energy depletion or exhaustion; increased mental distance from one’s job, or feelings of negativism or cynicism related to one’s job; and reduced professional efficacy.” The change still does not define burnout as a medical problem and it is not new since it appears in the International Classification of Diseases version 10 as well. What it does is provide a focus on the increasing stress that we face by jobs that demand more time, effort and productivity while giving us less in return.…