I have written before about Do Not Resuscitate (DNR) orders and a recent effort to reframe them as Allow Natural Death (AND) orders. Last week there was a post on the subject on a New York Times blog.
There wasn’t really anything new in the article itself. It does, however, cite a research article more recent than the two I cited in a post last year (here and here). In fact, this study was a replication of one that I cited. I think replicating studies is a good thing, and this one basically confirmed the earlier results. (The study had the limitation of being a convenience sample; but I did find it interesting that it included a detailed list of the religious preferences of participants, and that two Episcopalians participated.)
Being the wonk I can sometimes be, I also took the time to read all the comments on the article. Those comments were also interesting. While something of a convenience sample in its own right, the comments also confirmed my own experience in some ways I thought worth note.
When I reviewed the comments, there were 65. While there were some professionals (physicians, nurses, EMT’s, etc), most respondents were, at least from what was shared, were not healthcare professionals. Some, both professional and non-professional, related specific events that shaped their thoughts, but most did not. All addressed in one way or another, the medical terminology of DNR and AND, and whether or not one term was preferable. A few respondents even suggested other terms they thought might be more acceptable. Mine is not a scientific, or even a statistical analysis. However, I think some themes were visible that I think reflect the current state of affairs.
* First, folks in the lay community are confused about not only the terms DNR or AND, but the variety of ways that care at the end of life can be shaped. Folks out there have heard the various terms of DNR (and now AND), Living Will, Advance Directive, Health Care Treatment Directive, and Durable Power of Attorney (DPOA) for Health Care; but they don’t know the differences among them. This became clear from the number of folks who wrote about a patient “signing a DNR,” which does not apply to DNR or AND orders, but to Living Will and Health Care Directive documents. I can’t say I’m surprised that lay folk are confused about these distinctions. I educate nurses regularly about the differences.
One particular distinction that lay folk weren’t familiar with was that a DNR order (or an AND order) is in fact a very limited order. It applies when and if – and only when and if – there is a specific event that might call for CPR. It doesn’t affect the identified plan for care, whether the plan is to cure or to provide palliative or comfort care, unless such an event takes place. On the other hand, Living Wills and Health Care Directives offer directions that can shape care, and that apply in broader circumstances.
* A second theme is that the movement to develop Physician Orders for Life Sustaining Treatment (POLST) is spreading, and has legal standing in some states. Professionals among the respondents referred to various acronyms, but all were based on the POLST model. Like a Health Care Directive, a POLST-type document is completed by the patient before there is need. Like a DNR or AND order, a POLST-type document is completed with the assistance of a doctor or other advanced practice professional, and is a set of orders. There is some reason to think that they will be the step beyond Health Care Directives, in that the patient's preferences have the force of medical orders. On the other hand, they can be misunderstood. It was efforts to get Medicare funding for the time physicians and others spend with patients to complete POLST-type documents that triggered all the misleading "death panel" talk during the buildup to the new health care law.
* Few respondents expressed concern about their own deaths, but a number expressed concern about the death of another. That is, some were concerned that care might be withdrawn inappropriately and prematurely, primarily because of Living Wills and Health Care Treatment Directives. I have long said that few people are afraid of being dead, but many are afraid of the dying process. This is something different, although not a surprise: fewer folks are anxious about their own deaths or decisions, and more are concerned about decisions made for others and/or by others.
This is also consistent with my experience. Family members struggle when asked to make decisions that change the goals of care from cure to comfort. The various forms of Advanced Directives are supposed to help with that, and they do. It is easier on a family member to hear and support, "This is the preference your loved one has expressed," than, "What do you think?" However, there are still folks who fear that doctors will slant their information and decisions based on personal bias and/or business concerns, including some who responded to the story.
I think these are important issues that need to be addressed through education. That includes education of lay folk, but also of professionals. While the professionals responding to this blog post knew their business, I encounter professionals who don’t, and so can’t properly inform or educate patients and families. Sometimes, too, the poor information causes them unnecessary ethical questions in the course of providing care (not to say that there aren’t necessary ethical questions; but some are also unnecessary).
As a chaplain, and especially as a chaplain long involved in clinical ethics in hospitals where I have worked, these points of confusion or lack of information make it harder than necessary to make decisions consonant with the wishes of patients and/or families, and harder than necessary to communicate the decisions we make. Even as we support patients’ rights to make in advance decisions about their health care – including decisions that are different from those we might make, or even approve of – we need to have our terms straight and our information clear. It won’t eliminate our fear of the dying process; but it may well make it easier for patients to tell us about the care they want, and for those of us providing and supporting care to work together to meet those wishes.