Ask the ethicist: Patient-centred bioethics begins with patient education

Due to the illness of a family member, I have spent the vast majority of the past two years visiting many different hospitals. From Swift Current General in Saskatchewan to London Ontario’s Health Sciences Centres and St. Joseph’s, I’ve been there to attend to a loved one.  While my experiences as a “family member” at all of these facilities were overwhelmingly good, I did learn a number of things about the ethics of healthcare from the view of the most affected parties – patients and their families.

One day as I passed the nurses’ station I was called back to the desk to answer a question: did I know if my loved one was an organ donor? I must admit that the question shook me up pretty badly, as I hadn’t seen the patient yet that day, and you always wonder how the person is doing. I feared this was a warning about what I was about to see. I had no clear notion of the person’s wishes, but lied and said that I did, with the new-found conviction that I would ask that very day. I broached the subject with my loved one, while never letting on about what provoked such a discussion. It turned out that I had a pretty good idea of what the person would want, with some small differences. All in all, I knew the person pretty well.

The health scare passed and I went on with my teaching and consulting work in the same hospitals that I had visited. During a class filled with surgical residents, we talked repeatedly about families and patients not being remotely close in their understandings of what should happen in the event of death or incapacitation. This, I learned, was an enormous source of stress to the surgical residents as it was to their more-experienced supervisors.

While much bioethical literature is focused on “Doctor do this, doctor don’t do that” (probably one of the reasons physicians can be unpleasant to “ethics people”), I have come to realize that improving the relationship is certainly a two-way street. So far, much of the ink spilled has justifiably been focused on changing the perception of physician supremacy over the patient. The rights of patients have enjoyed an enormous growth in the past 40 years, and for good reasons.

The downside is that not all patients are equipped to handle such freedom. Every class I teach to doctors and nurses is filled with endless anecdotes of wasted resources and workplace stress created by the lack of a few uncomfortable but necessary conversations. As the class progressed I blurted out “why don’t they ask patients if they have had the ‘end-of-life’ discussion before admitting them?” Sometimes, my blurts invoke wincing from my students. On this occasion, the supervising physicians and residents were overwhelmingly in favour of such an idea.

But how would such a thing happen? Would it be effective? Anyone who has been admitted to hospital knows the long checklist of things to answer. What would be prohibitive about adding a question such as “I have discussed my wishes (about organ donation, resuscitation, etc) with my alternate decision-maker in the event that I pass away or become unable to answer for myself – yes or no.” I’ll admit the statement isn’t Hemingway-esque, but with some additional revision, it could be a conversation starter.  What if it only started conversations in 1 per cent of those who read it? I would contend that this would be a noticeable improvement for the patients and health care workers when these dilemmas emerge.