This is one of the questions that will be addressed in the Dying2Learn MOOC. As a palliative care doctor, it has been wonderful to have the opportunity to start this conversation, and I am looking forward to the interactions with real anticipation.
In developing this section of the MOOC I have tried hard not to assume too much about what participants should think or believe, or to push any particular perspective. Obviously that is a bit difficult for me, as my work for over a decade has been in the smoke and dust of the clinical battlefields where dying patients often end up i.e. acute hospitals. As palliative medicine clinicians we often feel like we are galloping in to rescue people from the hospital system, and (speaking for myself, anyhow) we can sometimes be a bit black and white about things. What I have learned though, over and over again, is that it is not simple for people. Many are unprepared for the decisions they will need to make, and - like BREXIT perhaps! - may not fully understand what they have let themselves in for until it is too late. The implied consent that comes with agreeing to a course of treatment may lead to a conveyor belt of care with no obvious jumping-off point. In my experience, default clinical treatment is actually not a good way to look after people who are dying. It may not offer choices that allow people to get out of hospital, it may not help people to understand what is happening to them, it may not do enough to ensure people are comfortable, and it simply may not allow them to do what is most important to them when their time is getting short. Often, it is just not kind. That’s my point of view. But in this week of conversations we will be really keen for people to explore what they know, what they fear, or what they have witnessed themselves, and to figure out their own approach to this death and dying thing.
The complexly human business of dying runs smack up against a medical system which is fundamentally about something very different: making the body last just a bit longer. And we are pretty good at it, too. Life-saving medical treatments do an incredible job of prolonging life - to the point where some kinds of death are seen as a “reversible problem.” When you hear cardiologists talking about people who have survived a sudden cardiac death, you begin to realise that we are in a very different place as a society from any previous generation. The question of whether we are prolonging life or prolonging death has to be asked. What we do with our knowledge, what are the impacts (positive and negative) of this expertise, and how we decide what is important to us as individuals and as a community: all of these questions are raised by the incredible achievements of modern medicine. But it is not just academic - we have to face them directly, as individuals, when we are sick, or when someone we care about becomes sick. As one of my patients said to me once - she was a very very elderly lady who had agreed to have a pacemaker implanted - “What will I die of now?” What an excellent and perceptive question!
This week of the MOOC will also include an online chat with myself and Dr Peter Saul, who is an intensive care physician in Newcastle. Every day he sees the high-tech version of death that scares people so much. His wonderful TED talk seems to have got the MOOC participants thinking - the link is below. It will give a bit of a taste of the conversations we can expect to have. The resources for this also week include a number of first person accounts of the experiences and responses of people facing death (their own or others’). I have chosen them because they are all so different in their approach. Some are written by doctors, so they incorporate a double reflection - not just about the phenomenon of death, but about an insider perspective on medicine that may shift dramatically when the experience “jumps the fence” and becomes personal. Those are very rich conversations indeed. They also, to me, remind us that whilst we think about “decision-making” in very abstract and rational terms, when you are actually in that zone it is not really such a rational process - it is in fact profoundly visceral. It can challenge us in so many ways.
So while I very much hope the MOOC will help participants take charge of their own decision-making, and have a bit of a headstart on knowing what they may want in future, I truly expect that these conversations will be real, profound, and illuminating for all of us. And that is a good thing!
Let’s talk about dying. TED talk by Dr Peter Saul
Nine things to know about reviving the recently dead http://www.wired.com/2014/07/revive-the-dead/
Geripal – this blog deals with issues and research to do with end of life care of older people – it’s full of wonderful resources – highly recommended http://www.geripal.org
Associate Professor Christine Sanderson, Clinical Research Fellow, University of Notre Dame Australia / Calvary Health Care Kogarah / CareSearch