'The fact of death should change everything'

We have been invited to participate in an advanced practitioner's workshop March 3 at the Max and Beatrice Wolfe Centre on a parent panel and we met with Stephen Jenkinson to discuss. We sat in the very same small office on the very same seats as when we first met to talk about Sasha in May 2006. Stephen holding Sasha's sister Eve while we talked about tricky communication with parents about palliative care embodied the coexistance of life and death that is the essence of the work at Max and Beatrice Wolfe Centre.

We all defer to a parent's presumed competence and experience. You know I ask audiences what business are you in? Well, I am in the business of democratizing your and your children's right to a good death. And there is a right and with that right there is a responsibility. With knowledge there are consequences. If dying is a realistic possibility, parents should know that and act accordingly; there is no opt out clause once you let that knowledge in. There are times when more life equals more death. You need someone who is an expert in dying and not just social workers or psychologists. I asked doctors in the CCCU, how many of you came into medicine to help dying children? Noone put up their hand. How many of you are trained to help dying children? There were some hands. Then I ask how many of you cared for a dying child this week. Everyone looks around and puts up their hand. Someone has to speak to parents and share disagreement over continuing. You know, when a number of people on the team feel "This cannot go on". We go by the "do no harm" principle with those in care, part of the harm is a lifelong effect on the family. And how do you deal with parents who have different perspectives, like yourselves. Staff have to learn how. And we know if parents try opt out, there can be efforts to gather them back in. We have this wrong assumption: working with dying is just a subset of our experience and what we do. I was just at a big palliative association where the presenter referred to a 'four year old who would not have a normal life'. I said 'Wait, he will have a normal 4 year old life. Plus an extended stay at hospital.' What do you need to do during a palliative care discussion? Well first off, not in the hallway! And this is not about brute speculation. You need to quiet things down and then really engage the parents. And this is not a question of knowing, you knowing or us telling you. There has to be room for some mystery. You know that statistics is just a puny lunge: if we offer several statistical scenarios, what are parents going to choose? Parents will choose to hear the best outcomes. And then we also have to agree that there are certain 'whys' I cannot and am not going to answer. The fact of dying should change everything but sometimes it doesn't.

These notes record fragments of the conversation. I tried to be accurate and faithful to Stephen's spoken style however any errors are mine alone. He is best heard in person.