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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. 

Decades of research have shown that end of life preferences are often not followed.  Yet, we also know that sometimes people recover well from acute medical crises, and documented preferences are challenged if recovery is likely. The standard discussions of medical facts, patient preferences, and quality of life can only take us so far if we don’t know what an acceptable outcome would look like for the individual. The discussion really needs to focus on the goals of treatment rather than what is done and what is not. After more thought, and being firmly admonished to not allow this grandparent to exist in an immobile state with her chin on her chest hugging a teddy bear, I propose a new category for consideration in clinical ethics discussions, and that is dignity.

Including dignity as a subset of respect for persons, we may be able to more clearly focus on a discussion of what actions and outcomes will support the person’s desired legacy as they reach the end of life. After all, this is most likely what our older adults seek and deserve from the healthcare system.  Let’s remember to ask the question, “What action will best maintain this patient’s dignity?” when we face dilemmas about DNR, quality of life, and goals of care.

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.

2 comments | Topics: Advance Directives, Capacity, DNR, End of Life Care

Comments

Kevin T. Keith

Kevin T. Keith wrote on 08/14/12 2:56 PM

Your comments are well-taken, but the story you relate points up one of the main problems in this area. We all know the difficulties getting DNRs executed, included in the medical record, advertised to clinical staff, and remembered and heeded at the crucial moment. But another problem arises with attempts outside the formal medical record to make patients' wishes known and followed.

Informal media such as bracelets, wallet cards, and the like are very problematic as ways of expressing DNR orders. I strongly suspect that first responders or ER personnel are going to be very hesitant to refuse to initiate treatment because of a three-word directive engraved on a bracelet. The legal concerns are obvious: it cannot be known when this "advance directive" was adopted (a serious problem in states where ADs are time-limited), whether the patient still endorses it (especially with wallet cards, which can easily be forgotten by the patient), and exactly what it covers or what limitations or exceptions the patient may have wanted - all issues explicitly addressed by standard DNR forms. In addition, simple tools like cards or bracelets will not meet legal standards for advance directives in many states.

What is needed is some agreed-on, legally authoritative means of indicating patient preferences in resuscitation situations, and the existence of a broader AD where relevant. Bracelets would be a good choice if it were understood that they carried sufficient legal authority, and if they could be worded in a way that was clear and specific enough to cover the relevant cases. But as ad-hoc expressions in a legal regime that requires specific and detailed forms, they may only serve to complicate things.
Mohammad Ali Naquvi

Mohammad Ali Naquvi wrote on 08/23/12 4:20 PM

Perhaps digital bracelets are the way to go to address Kevin's concerns above, although the more information there is to read, the less likely it will be read in an emergency. Herein lies the dilemma...

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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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