There is much talk in health care, especially in the fields of palliative and end-of-life care about “Advance Care Planning”. And rightly so. For those with advanced illness, this process is critical to patients receiving the treatment they want and only the treatment they want. The process done well clearly improves patient’s perceived quality of life, reduces the burden of suffering, raises patient satisfaction, and also seems to reduce overall health care costs.
For a medical treatment team, whether palliative care or other, the process often needs to be focused on decisions about health care choices. Those are our immediate concern and often those concerns truly need to be addressed in the very short term such as making decisions about resuscitation with an elderly patient suffering from heart failure and pneumonia.
However, there is also a class of “patients” emerging who, while they have a diagnosis of HIV/AIDS or “terminal” cancer are not necessarily near death and, because of maintenance therapies that can often have very controllable side effects, look and feel fairly healthy. They can therefore do lots of “normal” things and lead a “normal” life. The other day I saw Magic Johnson on TV announcing he has purchased yet another sports team in LA. These people may not be so different from someone like me. I’m healthy for my age but will soon be at the age where I will be forced to begin accepting Social Security payments whether I like it or not. I clearly have a lot less of my life ahead of me than I have behind me.
In this situation, certainly the decisions we generally associate with advance care planning are critical. Under what circumstances do I want to be kept alive if I can no longer make decisions for myself and by what methods? But as I begin to seriously engage this phase of my life, I increasingly realize that there are questions that go far beyond this which, if I engage them seriously, will make all of the life I have left more complete and fulfilled. The first issue for me seems to be that if there are things I want to do or a way I want to be sometime in my life, I need to be about creating that reality for my life now. And I can create much of that reality if I plan for it. However, this planning also means re-examining some assumptions about how I have lived my life. Do I really need the “security” of a steady job and is that security coming at a price that I no longer need to or want to pay because it is keeping me from other things I want to do? How many of my possessions would I really miss if I didn’t have them anymore? Do I continue to need to own a house with the responsibility that brings or can we be free of it?
These are not simple or easy questions. I have no intention to ever retire in the normal sense. I don’t even play golf and I don’t like either Florida or Arizona. I want to cook more and maybe learn Spanish. And I want to continue my professional journey down a road I still have intense passion for.
My point in all this is that, while advance care planning in the medical context is important, it is really only a part of a larger conversation. And this is not just about a bucket list either although that can be part of it. Ideally, it should be the end product of a much longer and intricate process of deciding how you want your life to be whether you have some idea of how much longer that life will be or not.
Certainly, for us as chaplains, I think we need to be much more intentional than we have been about engaging our patients and their caregivers in these larger issues for themselves. To the extent we can help patients explore whatever these kinds of questions are for them, we will help, not only make the decisions about Advance Care Planning, but create the lives that they want for themselves and those they love.
George Handzo, BCC, CSSBB
President, Handzo Consulting
Senior Consultant, HealthCare Chaplaincy