Friday, February 9, 2007
Family complaints about hospital deaths; NGOs and PAS; Religion & terminal sedation & decision-making capacity
It should be noted that with Christan's flurry of posts the last couple of weeks Pallimed has now exceeded the 300 post mark.
Several things in brief:
BMJ reports that over half of complaints against Britain's NHS regarding hospital care were to do with deaths:
"In many cases, families complained that they had received contradictory or confusing information from different staff caring for a relative. In other cases, relatives felt that they were unprepared for the death or had no time to arrange for family members to be present."
BMJ also has an interesting look at the role of NGOs in physician assisted suicide. It examines two organizations in detail (Exit in Switzerland and Compassionate Choices in the US). Both function as patient advocacy groups, assisting people seeking PAS--Exit volunteers will even physically help people fill and administer the lethal prescription. The authors'--whose tone is neutral--take is that these organizations help people overcome the physician obstacles to PAS (the fact that many physicians want nothing to do with it). Oregon aside, the article is most relevant to the UK where there is a very active national debate about 'assisted death.' If you're interested Compassionate Choices website is quite interesting, especially in how it uses a lot of palliative-care type language (although my sense is that most palliative care clinicians in the US are neutral about PAS at best--many, myself included, feel quite negative about it--there are notable exceptions of course). The other interesting thing about CC is its use of consumerist language..."choice" etc. As if one can pick from a buffet of choices about end of life care (leather or vinyl seats?)--something that doesn't reflect the reality of dying at all.
NEJM this week has an article about religion, conscience, and controversial clinical practices (full-text available for free). The article is base on a survey of American physicians and their attitudes towards religion and controversial practices. Most of the context for this is reproductive issues (abortion, contraception) but terminal sedation is also specifically included. Basically they found that most physicians feel it is appropriate to disclose their moral objections to a medical therapy, but that they should still inform their patients of all available medical options, and refer a patient to a physician willing to help the patient (86% and 71% for the last two obligations). The more religious the physician was, however, the less likely they were to endorse an obligation to informing/referring their patient. And those physicians who morally objected to a specific practice were much more likely to say that they had no obligation to inform or refer. (Only 15% of physicians personally objected to terminal sedation compared to ~half for reproductive issues.) It should be noted that only 63% of physicians responded to the survey. The lesson, I guess, is caveat emptor, and particularly regarding reproductive issues one cannot assume that your physician has your best interests in mind/agrees with you about your best interests/or will even engage with you about this.
I wish the authors had asked the physicians if they believed they should promote their own religious beliefs to their patients--my guess is that only a tiny minority of physicians, even the most religious ones, would endorse this. This, to me, raises the question of whether there is an active/passive element at play here--that it is ok for your religious beliefs to "passively" effect your patients (not mentioning to them legal and effective medical therapies based on your religious beliefs) but actively proselytizing is not ok. Of course active/passive distinctions are frequently invoked in palliative care as being morally valid....
In a laterally related article The Hastings Center has just published a report on patient religious belief and medical-decision making capacity (free .pdf here). It is a long argument (that I can't really summarize) that religious beliefs may lead to patients lacking medical decision-making capacity, but that this does not necessarily mean that those patients are incompetent to make decisions. Incompetent in the sense of patients having their (legal and ethical) right to autonomy and to decide what is done to their body taken away from them. Are certain patients due to strongly held religious beliefs incapable of rationally understanding medical information and making decisions on that? Yes. Does this mean their right to make decisions should be forfeited? No (not necessarily). This is the crux of the author's argument. A problem, which is addressed in the article, is that one person's religious beliefs may be another's psychosis, and does cultural sanctioning of religious beliefs ( i.e. there are a lot of believers in X therefore it's ok versus a small fringe-cult's beliefs) make a difference in what is, well, crazy (my words, not the authors) and what is faith?