Discussing patients’ end-of-life wishes ‘key’ in Huntington’s

Jan 9 2013

By Nikki Withers, medwireNews Reporter

Discussing end-of-life issues with patients suffering from Huntington's disease (HD) is a key responsibility for physicians, say Dutch researchers.

Indeed, Suzanne Booij (Leiden University Medical Center) and co-authors suggest that there should be a "legal, professional and moral obligation for a physician to talk about the subject, especially in the case of neurodegenerative diseases such as HD."

Euthanasia and physician-assisted suicide (PAS) by request, or based on an advance directive, are legal under certain conditions in the Netherlands. In the present study, Booij and team investigated the role of the physician when talking about end-of-life wishes with their patients.

A total of 15 physicians experienced in treating HD were interviewed for the study. The physicians (four general practitioners, two psychiatrists, two neurologists, and seven nursing home physicians) were asked various questions: for example, how did they communicate with their patients about euthanasia or PAS; what were their experiences with, and moral considerations about, euthanasia or PAS in patients with HD; and what was their experience with advance directives.

The physicians were also asked why they thought patients may want to talk to them about the subject, and possible limitations of executing an advance directive.

Writing in the Journal of Medical Ethics, the researchers report that physicians appear to recognize the fact that HD patients think about the end of their lives and have end-of-life wishes, but they do not tend to initiate a conversation about the subject.

The researchers also found that, although advance directives are used, physicians do not act solely on the basis of an advance directive.

In recommending a legal obligation for end-of-life discussions, they write: "The physician should be aware of the fact that although euthanasia is not a normal medical treatment, it is part of the physician's obligation to educate the patient about the disease and the prospects and it may be the physician's responsibility to educate the patient about the possibilities of choosing the end of life."

They add that "this obligation can be seen as a commitment of best intents, laid down in a letter of intent by the physician."

The investigators suggest that further research should be carried out into the wishes of patients. This is not only to improve treatment, they say, but also to explore the expectations that patients have of their physicians.

"We also suggest physicians be better educated about end-of-life wishes and the possibilities provided for in the law, thus assisting them in improving the way they help their patients to deal and cope with a devastating disease such as HD as well as other neurodegenerative diseases."

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