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The Right to Fail?

Recently, Zaldy Tan MD wrote a thoughtful article in JAMA (The “Right” to Fall, JAMA. 2010;303(23):2333-2334) regarding the autonomy of elders and the tension we often face in the geripal world between doing right for the patient and preserving the rights of the patient. I’m sure many of us have experienced this and have repeatedly discussed in team and with families whether there is “anything we can do” to help the patient who is surely a slow-motion train wreck waiting to happen. Unlike Wall Street banks, we allow patients to decide to “fail” on a regular basis: she doesn’t want more help, doesn’t want to consider moving to a higher level of care, doesn’t want to have that test/procedure/ medication/(fill in the blank), and HAS capacity, however limited, to make her own decisions even when those decisions may result in injuries or hospitalizations.

Dr. Tan writes of the impact the patient’s decisions have on her aging daughter and on the treatment teams and concludes that “I would explain again that no matter how misguided, older patients are entitled to make their own decisions. I would espouse the ethical principle of autonomy….” Most of us were likely trained within the boundaries of 20th and 21st century western biomedical cultural constructs and would presumably agree with these statements. But what if Carla, the patient’s daughter in the article, were also your patient? What if autonomy were not solely viewed as an individual’s right but as a concept that needed to be considered within the context of the person’s community, relationships, or interdependencies? The concept of “relational autonomy” is not new and I am not advocating that we move towards allowing the societal “greater good” to dictate medical decision making for individuals; history is littered with terrible examples of what can happen when we allow that to happen. But, while we can and do use individual autonomy as the principle that enables us to ethically step back and however regretfully watch the train go off the cliff, the emphasis on individual autonomy may also give us, in some sense, the right to fail families and caregivers, and perhaps even the patient herself.

by: Helen Chen, MD

Comments

Alex Smith said…
Yes, we discussed a similar situation recently on the ethics committee. There does seem to be something qualitatively different about discharging a 90 year old with capacity, knowing he will exercise bad judgement about health care, and discharging a 30 year old making poor decisions. The elder self neglect that frequently results is a serious issue and adult protective services, in my eyes, are stretched thin and often not as helpful as one would hope.
ken covinsky said…
Really interesting. This is touching on a big issue in Geriatric Medicine that is badly in need of more thought and development. The most common setting for this dilemma is the elder who is failing at home and "needs" to be placed.

There perhaps is a case that we sometimes take autonomy too far. On the other hand there are probably cases where we are too quick to label a patient's decision as irrational, because their tolerance for risk is much higher than ours.

For example, we sometimes push placement on a patient because we know there is a good possibility something bad will happen at home. However, the most important thing to the patient is living in their home as long as possible. They know there are risks, and the risks are worth it to them. While they do not make the decision we would have made, their choice is actually rational based on their values.

I suspect that for each "train wreck waiting to happen that ends up falling off the cliff, there is another "train wreck waiting to happen" that ends up managing reasonably well at home for a considerable length of time. Of course when this happens, it is often because there is a physician, nurse, or social worker involved who has expertise in Geriatrics or Palliative Medicine who helps make things work at home.

Perhaps one of the most important goals in our field is to work to have much fewer of the former and much more of the latter.
Dan Matlock said…
The other thing that makes this hard to think about is that, eventually, all trains go off a cliff - it's just a matter of when. Do people really want to die institutionalized? The literature suggests that they don't. Well that means they want to die at home.

Maybe we should think of the elders that go home as the little engines that could and the little engines that just couldn't - rather than thinking about them as going "off a cliff."
Belinda said…
Very interesting discussion. I agree that at times we do need to at least consider the larger picture and the impact our decisions to honor pure personal autonomy have on those care givers and others intimately involved in the situation.
suew said…
What about when an elder's 'poor judgement' potentially impacts others, as in the case of a 93 year old driving regularly (several times a day) on a well know route to the same places. Responce time, judgement, reflexes are all poor (to say the least), how to compassionately reason with them to consider other modes of transportation or rides from friends. Saying, oh well, if they die in an accident so be it is one thing, what happens if it involves innocent people around them? Or in the home, if there is a fire or other accident that impacts other people....none of us lives that independantly that our choices don't affect others.
Jared Porter said…
Alive Hospice's chief medical officer, Dr. David Tribble, commented on "The Right to Fail" over at the Alive Hospice Blog recently, if you'd like to check it out!

http://alivehospice.org/blog/2010/07/15/how-autonomous/

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