Allowing a Natural Death
March 16, 2007 - Today the weekly radio show "Healthstyles" on WBAI (New York) featured a typically enlightening discussion of key health issues from a nursing perspective. The show is hosted by American Journal of Nursing editor-in-chief Diana Mason, RN, PhD, FAAN (right) and Barbara Glickstein, RN, MS, MPH. Today's topic was end-of-life care, specifically the importance of advance directives and Do Not Resuscitate (DNR) orders--or, as one of the guests noted, what some have started calling "Allow a Natural Death" (AND) orders. In addition to Mason herself, who hosted today's show, two of the three guests were nurses, and the show provided an excellent forum for all to educate the lay audience about these health ideas. Mason and her guests proposed taking a more holistic, patient-focused approach to dying, which will often mean no aggressive treatment for terminal patients. This alternate approach runs counter to what even many health workers still assume patients want. Of course, in giving nursing leaders the chance to make this case, "Healthstyles" also shows its audience that nurses are articulate, knowledgeable health professionals. We salute Diana Mason and WBAI for the show.
In her introduction, Mason describes the "debacle" two years ago surrounding the death of Terry Schiavo. Schiavo was the Florida woman who had no advance directive and who ultimately was permitted to die some 13 years after suffering irreversible brain damage, following lengthy judicial and political battles. Mason notes that this case was a "wake up call" about the right to die, resulting in an increase in advance directives. These are the legal documents in which people can specify who will act as their health care agent if they lose the capacity to make their own decisions, and what health measures they would and would not want in that situation. Mason suggests that the well-known reluctance of those in the U.S. to discuss issues related to death can easily result in many of us having a "horrible death instead of a good death."
Mason's first two guests both work with Compassion and Choices ("CAC"), a national, non-profit "choice-in-dying" organization that provides support services and related advocacy to the terminally ill. Mason introduces her first guest as "Dr. Judith Schwarz," a "registered nurse and clinical coordinator" for CAC in the northeast and Washington, DC, and the "patient support coordinator" for CAC of New York. The second guest is David Levin, the executive director of CAC of New York. Mason identifies Schwarz as a nurse and by her titles more than once. Mason does not say explicitly that Schwarz's "Dr." title refers to a PhD in nursing (not an MD), though it seems likely that at least some listeners would benefit from the clarification. Mason might also have noted that Schwarz is a nationally recognized expert in end-of-life care and nursing ethics.
Mason gives Schwarz plenty of room to explain what she does for CAC. Her work includes fielding calls from the terminally ill and their loved ones, providing information on choices and how to navigate the health care system, and providing support to patients and families, including doing house calls and assigning volunteers to help.
Levin explains CAC's work in broader terms and underlines the importance of advance directives, again using the Schiavo case to provide context. He notes that people should make sure to discuss end-of-life issues with loved ones, and to give copies of their final advance directives to those loved ones and to "physicians."
At the first opportunity, Mason adds that people should also give copies of such directives to nurses, such as nurse practitioners and home care nurses, because they will often be the ones to hold up the directive and say--presumably to those eager to provide aggressive treatment--that the patient has said he or she does not want this. Mason has of course reminded Levin and her listeners that nurses too are important health professionals in this context. Although Levin certainly knows this, the exchange is a great illustration that no one can fully escape a social bias as deeply embedded as physician-centrism is. But Mason doesn't just bring that out. As part of the same quick interjection, she makes the additional point that nurses are the ones who often act as a patient advocates in such situations, trying to protect the patient and her larger interests from a system that remains largely pointed toward aggressive treatment that may serve only narrow, short-term patient interests, if it serves the patient's interests at all. Levin immediately agrees with Mason's comment. This is nursing advocacy at a high level. Listen to the audio clip in Quicktime.
For the rest of the first half hour, Mason and her guests continue to discuss the legislative and practical issues surrounding advance directives, with a focus on the situation in New York state. Schwarz provides helpful information about some practical difficulties in enforcing directives in acute care settings, and about the negative effects on loved ones when there are no clear directives to guide their choices. Indeed, even when there is a directive, an agent may need support to stand up to the lingering systemic bias in favor of treatment and against hospice and other choices. Schwarz notes that CAC can help with these issues.
At one point, Mason notes that the focus of physicians is often to prolong life, and that even many nurses (who might be expected to take a broader view) seem to have difficulty with the idea of ceasing to feed terminal patients. Mason notes that she was distressed to see some of Terry Schiavo's nurses suggesting that Schiavo was not in a vegetative state, though that had been well-established for some time. It's not clear to us how many of those the media presented as being Schiavo's "nurses" really were registered nurses, but to the extent they were, it would seem to be troubling not just as an expression of an apparent desire to preserve life at any cost, but as an example of allowing personal views to overwhelm professional judgment. Near the end of the show, Mason returns to the need to educate health workers themselves about end-of-life issues. Listen to the clip in Quicktime.
After a break half way through, Mason adds a third guest, Jo Stecher, RN, MA, whom she introduces as a "certified clinical transplant coordinator and a registered nurse." Mason notes that Stecher teaches nursing at Florida Gulf Coast University and is also a doctoral student. This is a great statement about nursing education, though again we suspect some listeners might need to be hit over the head, such as with a phrase like "studying for her doctorate in nursing."
Mason asks about a movement in which Stecher is involved to shift the name and overall focus of DNR orders to "AND"--"Allow a Natural Death"--orders. Stecher explains that this represents a linguistic shift to emphasize the positive, compassionate nature which actually underlies DNR. Apparently, research suggests that the traditional name has contributed to some distress on the part of loved ones, who may worry that the main thing going on is the withholding of treatment from the patient. Stecher also stresses the need to move, for terminal patients, from the current "cure mentality" to more of a "caring mentality." Listen to the audio clip. Later, Stecher mentions an article about changing attitudes toward end of life care that was published in the Journal of Emergency Nursing --another helpful reference to nursing scholarship.
Mason and her guests provide practical patient education by addressing how a lay person might apply the AND principles even in clinical settings that are resistant. Stecher explains that even a "DNR order" can be framed in terms of "natural death," and can address the humane management of symptoms as part of a natural dying experience. Mason encourages listeners to educate health workers about AND. Listen to the audio clip.
This part of the show also demonstrates that the lay media can inform the public and health workers about important nursing issues and serve as a vehicle for patient advocacy. AND could be a more comprehensive, proactive, and sensitive approach to end of life care--not just barring certain acts, and possibly leaving confusion about others, but making it a positive goal to achieve a natural, dignified, more comfortable death. "Allow a Natural Death" may help us see better what we can do for the dying while they are alive.
Mason closes the show with a short discussion of "assisted dying." Schwarz and Levin are quick to point out that CAC and some other groups, including the American Public Health Association, have come to view the term "assisted suicide" as an inappropriate one for the decision of a terminal, competent person to hasten his own inevitable death. They prefer terms such as "aid in dying" or "patient-directed dying."
Mason notes that some people now voluntarily stop eating and drinking. Schwarz explains that some patients who are terminal but not yet in the final stages of life may choose this option so as not to experience the deterioration, dependency, and painful symptoms that may lie ahead. She notes that CAC will tell people they may want to consider this option, and that they should talk to their physician or nurse practitioner about whether they would support it. Listen to the clip.
Mason and Levin discuss a model bill supported by the National Right to Life Committee and other groups that would establish a presumption that everyone who has not expressed a preference must be kept alive by artificial nutrition and hydration, with limited exceptions. Levin strong opposes this, referring to it as "paternalistic" and "intrusive," something that most people would not want.
On the whole, this an excellent discussion of a key health issue with extensive input from highly qualified nurses, which of course also shows listeners that nurses are health experts. Mason makes a point to communicate the level of education her nurse guests have, and she is alert to outdated assumptions about the role of nurses in health care. The show might have done a bit more to tell listeners just what the end of life can mean without the measures the show discusses--what is it like to experience aggressive resuscitation, or to be a terminal patient kept alive through heroic support measures well past the point of natural death? Mason and Schwarz touch on this in passing, for example in Schwarz's comment about avoiding deterioration and painful symptoms, but this might be another area in which listeners would benefit from more explicit description. The show might also have brought the issues into sharper relief by having a guest who disagreed with the ideas being espoused by Mason and her guests.
We thank Diana Mason, co-host Barbara Glickstein who did not appear in this show, and WBAI for providing such an important vehicle for nurses to give the public vital information about health care--and about nurses' own key roles in that care.