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Topic: Capacity
July 13, 2015 | Posted By Wayne Shelton, PhD

There has been a lot of talk recently about end of life care and how people die in America as well as important recommendations made on how effective end of life care should be provided. But there is still much work to be done. Because the nature of this work cannot be resolved by more laboratory experimentation or investment in and mastery of technology, the kind of challenge presented to our healthcare system is actually more daunting, since it relates to how physicians’ communicate with their patients. The precise question I am raising with respect to the kind of end of life care patients receive at the end of their lives is this: Do physicians follow the golden rule? Do they give their patients the chance to have the same kind death they would want for themselves and for their families? Sadly, the answer is too often, no, they often do not follow the golden rule.

A recent study from Stanford University “found most physicians surveyed would choose a do-not-resuscitate or “no code” status for themselves if they were terminally ill even though they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis.” At the same time, at 2013 JAMA study found that most seniors want to die at home or in the home of someone they know and avoid burdensome end of life treatments, yet only about 1 in 3, or less, actually do. In fact, about 1 in 3 people over 65 die still die in hospitals or ICU’s after having receiving aggressive, often burdensome, medical interventions. Of those that are moved to hospice care, 1 in 3 are there for less than three days before dying. So it’s safe to say that, though end of life care has improved for the past three decades, there are still many elderly people receiving overly aggressive, sometimes unwanted treatments, at the end of life. What are the barriers to elderly patients receiving the kind of end of life care they say they want? Let me go over two obvious ones.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

March 10, 2015 | Posted By Jane Jankowski, DPS, LMSW

One of the challenges clinicians must learn to manage is the patient who does not adhere to medical recommendations while expressing the desire to be well. It is widely accepted that patients with the capacity to make informed decisions retain the right to make choices that are good for them and choices that are not, there are instances where capacity to make a choice becomes less relevant than the practical considerations related to achieving the patient’s goals. When patients state they wish to recover from illness but refused to comply with the necessary treatments this disconnect poses a different kind of dilemma. Morally, it is simpler to digest that that some patients will refuse treatment, and there is robust support for respecting refusals. But what do we do when a patient asks for one thing but does another? Such cases pose intractable impasses for providers who arrange care plans based on the patient’s stated goals of recovery, yet encounter what seem to be enigmatic refusals to adhere to recommendations and interventions. There is a clear obligation to attempt to understand the patient’s perspective and thoroughly as possible. What may appear to be inconsistencies in preference may very well have a logical explanation. Once efforts to unpack dissonant expressions have been exhausted, a different approach may be needed to figure out what may be possible for such a patient. The first question is often about capacity – does a patient who asks for one thing but does another possess the ability to make an informed decision? In some cases, the resolution ends here if the patient is found to be unable to make an informed decision – or does it? If the objection is strong, and the intervention requires a high degree of cooperation from the patient, capacity may be moot because there is no practical way to proceed without cooperation. For example, a patient who insists she does not want to die, but simultaneously resists life sustaining dialysis leaves providers with very few options. A patient receiving a temporary intervention to buy time for recovery may in fact, not achieve the desired healing – how long must a bridge therapy continue? In such cases, capacity may be part of the picture, but I would argue it sometimes becomes a red herring we chase instead of taking a hard look at the medical facts and practical considerations in such cases. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website. 
August 14, 2012 | Posted By Jane Jankowski, LMSW, MS

Tis the season for family vacations, and like others, our clan tries to incorporate visits with extended family into our routes or final destination. This year, I was able to spend some time with an almost 95 year old grandparent who had some strong views on what she wanted for end of life care. Now, keep in mind, this lady puts most of us to shame with her daily swims, daily reading of the Wall Street Journal, efficient home economics, and speed at calculating Cribbage points. I was struck by the progressive stances held by this wise woman, and was forced to recognize the real risk that her preferences could easily be overlooked in an emergent medical situation.

Sitting in the yoga studio at the assisted living center where she resides, I notice a rather substantial silver bracelet dangling from her left wrist. Unusual for a jewelry minimalist, I asked about it. It is a DNR bracelet. My bioethicist ears perk. Upon closer examination, I see the engraved words, “DO NOT RESCUSITATE” marking the surface.  “Many of us have them,” I am told. Explaining the pervasive concerns shared by her peer group that EMTs will perform CPR no matter what, the message is clear that in this cohort of older adults there is a fear that no matter how well documented and verbalized their preferences may be, these wishes may be overlooked. And this fear is not without merit. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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