Volume 5, Issue 01 - March 2002

The Elusiveness of Ethics Expertise

Spending last year as the inaugural resident in the new training program for clinical ethicists at the Royal Alexandra hospital in Edmonton was a more educational experience than I could have hoped for. In this article, I will share some of this experience and point to a few of the particular ethical tensions that I have come across.

Virtually every week featured an encounter or case that was not quite like any other that I had seen or read about. I quickly realized that ethical issues are never quite the same from one situation to another. Despite trying, I could never find a single formula or approach that could guarantee success in resolving clinical ethical dilemmas. So what was I to make of the education that I had received? For several years I had been trained to break down interesting cases into their relevant issues and concepts, deconstructing and reconstructing and analyzing them, ultimately with the goal of finding the best resolution to whatever the problem was. But I have learned that a hundred cases from a textbook, while helpful for enabling one to think critically and deeply about finding solutions to difficult problems, are not as valuable as one clinical encounter that involves real human beings in real situations. In the clinic - on the "front lines" - is where the life-long lessons are lived and learned.

“Experts” & Expectations

It is funny that when you get to the hospital and have the word ethicist on your badge, some people think that your education has already been completed. They think that the completion of academic ethics training means one is now an “expert” who can skillfully solve all problems. On one occasion, a nurse who had listened to my interaction with a physician cornered me and yelled at me for being too non-committal. It seemed to really upset her that I had first outlined for the physician several reasons why it would be a good idea to offer a PEG feeding tube to this particular patient, and then gave a few other reasons why it may not be such a good idea. The nurse was angry: “What good are you if you can't give the poor doctor the right answer? Can't you make the decision - you're supposed to be the expert!” I tried to explain that there are not always “right” answers in these situations. She was unsatisfied. I tried to explain that the physician-patient relationship involves a sacred trust and that medical decisions ultimately have to made between doctor and patient/family. My role was that of a helper, a facilitator. “Not good enough.” I then said, “Look, I've been doing this for 3 months now, while Dr. A has been seeing patients like this for the past 20 years! And you want to call me the expert?” Yet she did want to call me the expert in making tough decisions. And she certainly wanted me to accept that label. I think that expertise is, in fact, something that an ethicist fresh out of university works towards over many years. For now, I am an educator, a facilitator of difficult conversations, an applier of ethical theory to medical practice, an advisor to clinicians and patients. Maybe in 10 or 20 years I'll become more comfortable with the label “expert.” For now, I'll leave that designation to those who have been working with complex medical situations for more than a few months.

End of Life Issues

Ethical issues come from all over the hospital and arise in many patient groups. Not surprisingly, however, there is a tendency for ethical issues to become ethical problems in situations where a patient is potentially approaching the end of his or her life. And while there is often a perception that a part of these end of life conversations is about rationing resources, in fact this is rarely the case. The overwhelming priority in making decisions in end of life cases is the patient's well-being, as expressed by the patient him- or herself.

Competent patients can tell you what treatments they do and do not want. Patients who can no longer express themselves may have left written or oral advance directives, or may have informed family members or caregivers about how far they would like to go in fighting to stay alive. These are very personal decisions. We have the technology to keep bodies breathing and hearts beating for prolonged periods, but most people have realized that there comes a point when using such equipment becomes absurd. A majority of us will likely expire after ceasing to utilize some life-preserving therapy, so it is wise to think about such things beforehand. Sharing these thoughts with loved ones and your family physician will potentially save all of them a great deal of additional grief when your time comes.

One of the technological breakthroughs that drove the growth of the field of ethics was the introduction of dialysis over 30 years ago. When it became available, it was in a very limited way; thus, there had to be some criteria developed to determine who would receive the treatment. The committees that were set up to make these decisions became the precursors of present-day ethics committees. Their criteria were developed mainly from a principle of efficacy - who stood to benefit most from the treatment? The elderly were excluded. It was clear to those pioneers that young and middle-aged people were likely to derive more benefit, and through the 1970s it would have been very rare to see anyone over 70 receiving the therapy. Not so today. While the principle of efficacy still applies, there is widespread recognition that some may well benefit from dialysis very late in life, provided they don't have a long list of other serious health problems. Today, rationing resources is talked about only generally - with respect to groups and categories of patients. It almost never enters the decision-making process for individuals, except when caregivers who feel that treatment withdrawal is warranted are accused by family members of trying to ration at their loved one's expense.

Long-Term Tube Feeding

Another ethical issue that seems to recur with some frequency concerns the appropriateness of long-term artificial feeding in patients who are unable to swallow and who may be suffering in a variety of ways. This problem is often one of interpretation. Should losing the ability to swallow be seen as a physical malfunction that should be vigorously treated in these individuals, or should it be seen as evidence that dementia has progressed through to its final stages? One of the ethicist's tasks is to figure out how we might go about answering this question in a definitive way. Often the route to such answers is through health ethics research. One of the endeavors I am currently involved with aims to answer these types of questions, mainly through speaking with a large number of families whose loved one’s have received feeding tubes, and asking them about how the tube has impacted the quality of patients' lives and deaths.

Code Status

One other issue that regularly causes ethical problems is what has become known as “code status.” This refers to whether there will be an attempt to resuscitate a patient whose heart stops beating. Our current law demands that everyone be resuscitated with artificial respiration and CPR, unless they have specified beforehand that this is not their wish. There is often a need, then, to talk to patients and their families about putting a “do not resuscitate” (DNR) order on the medical record. On several occasions, I encountered family members who were very reluctant to agree to this, despite evidence that performing CPR on frail, elderly people almost never works and just ends up looking like an undignified assault on a dying person. I think many of the problems with DNR come from misunderstandings about it by family members who sometimes fail to see the conditional nature of the request. Family sometimes don’t hear the “if” when asked, “if your Mom's heart stops beating, then should we consider letting nature take its course?”. Conversely, sometimes care providers fail to appreciate just how significant a moment it can be for a person to accept responsibility for saying “no” to potentially life-saving treatment for a loved one. Code status, like much discussion about end of life care, is a delicate issue that requires careful and thoughtful communication.

In Summary

These few issues scratch the surface of what an ethics resident may encounter in the hospital setting. My graduate training in ethics gave me some tools to help think about these issues in a systematic way, but ethics expertise is not like more technical skills that can solve problems definitively. Ethical tools, like the commonly heard principles of respect for autonomy, beneficence, and justice, are surely good aids to decision making, but it is not enough to merely read about these. Full training in clinical ethics requires time in the clinical setting, honing one's skills, applying theory to practice, and learning how to navigate though the complexity that now characterizes our health system. Graduate school is a good start, but ethics education continues long after one has begun professional practice, and moves steadily along until that ultimate quality is achieved: ethics expertise.

Announcements

• Bioethics Week 2002
  Congratulations to all those who helped to celebrate Bioethics Week by hosting events in the province! In order to help PHEN continue to assist you with Bioethics Week events, it would be very helpful if you could take a moment to complete the online evaluation form on PHEN’s website (www.phen.ab.ca). Also to assist with evaluating the success of Bioethics Week, please ensure your activity appears on the list of 2002 events on the PHEN website. Thanks for your assistance with this!

• PHEN Membership Renewal
  A little reminder that PHEN memberships expired at the end of December, 2001. In order to renew memberships, please mail or fax your completed renewal form (available at PHEN’s website) to our Northern Alberta office (address and fax number below). Your membership renewal will be processed when we receive your application form and payment of annual dues.

• PHEN Annual Conference and General Meeting
  

  Registrations are now being accepted for the PHEN Annual Conference and General Meeting scheduled to take place in Edmonton on May 24, 2002. For more details and a registration form, click here.

Views offered in this article are those of the author and do not necessarily reflect the position of the Provincial Health Ethics Network.