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