As I mentioned in my last blog entry, over the past two weeks (and a little more due to unexpected developments that may be a subject of a future blog) I was on call covering the neurology service at my hospital. Inpatient neurology can be somewhat depressing and one of the more common cases I see are patients in the intensive care unit in comas for whatever reason (cardiac arrest, massive stroke etc.) and asked to give a prognosis on recovery (almost always grim) and to convey this to the patient's family. The cold reality is that every hospital bed is a precious resource and a comatose patient with no prospect of meaningful recovery means there is one less bed available to care for another sick but potentially curable patient. Thus having "The Talk" with the family to have them understand the situation and "make the right decision" is an important, though thankless task that often gets delegated to those in my specialty. I've been a part of many such conversations during my training and my early career and I still never feel comfortable doing it and perhaps that's a good thing. While it's a relatively routine part of my job, I am always cognizant of the fact that for the patient's family, it is a singular event and a conversation that they may never forget and have to live with for the rest of their lives. After observing and partaking in many awkward experiences in my training, I found that in such a conversation you have to say the same thing but in two different ways.
In the role as a medical professional, I think you have to be blunt and unequivocal about the prognosis. The family naturally will hang on to any hope possible that may be expressed directly or indirectly by the medical staff. While it sounds cold-hearted, I find that it's more compassionate to "dash" these hopes early to remove their main source of doubt in their decision-making process (of course in as delicate a manner as possible). During my residency, I was involved in a case, in which we were asked to speak to a family of 12 year-old kid who suffered severe head trauma after being hit by a car while riding his bicycle and had no chance of any meaningful recovery. However, the attending pediatric neurologist at the time (a pretty well-known specialist in his field), in each meeting with the family, when asked about if there was any chance of recovery, kept shying away from stating the explicit truth and always replied with "there's always a small chance." Yet behind closed doors when discussing the case among other medical staff, he would express puzzlement as to why the family "can't just let him go" as they continually deferred on withdrawing care until weeks after the accident. I could tell they were ready to take that step much earlier but by leaving the door open, even slightly, just prolonged the agony of the decision. My take home lesson from that experience is that leaving any kernel of hope where there is none causes far more emotional pain in the long run.
The second is to preemptively deal with the guilt that families invariably feel when confronted by such a situation. If the patient has ever made his/her wishes known to the family either in conversations or better yet in a living will, having the patient's voice in the discussion definitely makes it easier. However, as it is often the case, the patient's wishes are often never directly known and the family is left to make that decision. The idea of contemplating "killing" their loved one understandably paralyzes the process and the family dynamics can also complicate the issue. There is nothing more heart wrenching than seeing two siblings arguing over "what would mom/dad want" as whatever the outcome, it never ends well. I still view my role in this regard to simply lay the facts and not express my opinion unless I'm explicitly asked by both sides. I've found that expressing an unsolicited opinion can often be unwelcome. However, I suspect that when the family does finally ask for my opinion, they know what my answer is, but want to hear it more from the perspective of another human being as to what would I do if I were faced in such a situation. While I am truly fortunate that I have yet to ever be in such a position, for me, the answer is an easy one. Probably because as a medical professional, I have intimate knowledge of what goes on and can safely say I would never want myself or a loved one to "live" like that indefinitely. Finally being able to articulate that (which in the beginning was harder than I thought) and hearing that perspective from another person, I think helps assuage the guilt that any family would feel, even if they knew it was what their loved one would have wanted.
I can't say these conversations ever really go "well" and perhaps there are better ways to handle it, but from my experience, I've found this approach seems to be best for everyone involved. I had this conversation five times over the past two weeks and unfortunately, I'm starting to feel that I am getting better at it.