Yesterday in class, during a discussion about full code/no code in the ICU, I found myself saying that Death Cafe can’t change the world. Then everyone added, “Alone.” Death Cafe alone can’t change the world. It provides a forum for people outside of the hospital, outside of a crisis situation, who are thinking ahead, idealistically and perhaps unrealistically, about what they would want in an ICU scene. But in the ICU scene, they probably wouldn’t be the ones making the decision. They would have to trust that their support person/persons would speak for them. That would require that they would have had some prior conversation(s) with that support person about medical decision-making and what they desired. How many of us have had those heart-to-heart conversations with our loved ones? And how to you do that, exactly, when you are healthy? Or just diagnosed with a life-limiting illness? Or doing everything you can to stay alive?
If you have figured out how to have those conversations, good for you. Don’t think you’re done, though. Now go talk to your extended support network and family, those who might show up at the end and have a right to voice an opinion or concern. (More commonly, no one shows up, but lets not imagine that:) Hopefully, we are talking way into the future here, and several people care about us. What about talking to your health care provider? Or insurance company? Do they reimburse for having these conversations? Last time I went to the doctor I took my written “Advance Directives.” It got copied and put in my chart, but zero conversation took place. My PCP doesn’t know what I want and didn’t ask. To him, it’s just a piece of paper. If I called to make an appointment to discuss “advance care planning” or “palliative care,” in the absence of a life-limiting illness, I bet I would be told that’s not possible; there is no billing code for that for a healthy person who just wants to plan ahead. Fortunately, I fit that category now. When my health changes (notice I said “when”), will I have a health care provider to then talk to? Or will I have seven, all from different specialties, who don’t really know me, and are concerned with one, fragmented portion of my current health care crisis. I’m not complaining; when I get sick and need specialists, I’m glad I have access to them. But who will be my primary healthcare provider who can advocate for what I want? I doubt my PCP will be around much. But we didn’t talk about what I want anyway, back when I was healthy.
You see the problem. You see why we get to the ICU scene where family is saying do everything because they are emotional and can’t let go and it’s a crisis and the’ve had no sleep. Meanwhile, the care providers don’t want to crack someone’s ribs, give injections and electric stimulation, make someone’s heart beat again, and basically feel like they are hurting someone. I skipped a few steps in-between, but it’s not hard to fill them in. Suddenly, (yes, it seems sudden) I’m in the ICU, a health crisis has occurred, and I’m trying to decide if I should go on dialysis, or my offspring is trying to decide if I should get put on a vent. Or worse yet, all those things have been done because at some point we made those choices, but now, things have reached a new level of crisis. Even if I have talked with my kids, or whoever is helping me make decisions, we didn’t talk about this particular crisis. How could we? How could we have known it would come to this? The medical care decisions never stop, and they are not clear-cut. Somehow we got to this point because we wanted a little more time together. It’s never enough. But now, I have an infection, or arrhythmia, or some other new challenge. I was at home playing with my great-grandkids a few days ago (notice how long I have lived:), and today we all just want to get back home and continue doing that. But maybe this time, it won’t be able to happen. How do we decide when the staff asks, “If her heart stops beating, what do you want us to do?”
What can we do personally, culturally, socially, medically, spiritually, to help us all prepare for this situation? Help me, folks. This is a relatively new (decades old) phenomena of being able to keep choosing more treatments, including more and more finely-tuned techniques to revive someone in the ICU or ER when a major bodily system or two has finally quit working, as it inevitably will do. Yes, we might get hit by a Mack truck, but the reality is that most of us die in the hospital, and there is the strong potential that some kind of decision to stop more and more treatments and let death happen will have to be made. Most of us say we would like to die at home. I know this, because I hear it all the time in Death Cafe conversations. Death Cafe is doing a great job providing an opportunity to talk about things like this. It normalizes conversations about death… with strangers. It’s not enough. We have to normalize conversations about death in our families, in our doctor’s offices, in the hospital, in our spiritual communities, in our schools, with our friends. Strangers are easier. Death Cafe is good practice. But Death Cafe alone can’t change our culture. We can, through the hard work of talking about death with our familiars. When I get to the ICU scene myself, or with someone I love, God help me; God help us all.
Many thanks to Atul Gawande, who’s book Being Mortal I have recently finished reading. I have a feeling I will be reading it many times again. Catch him on PBS’s Frontline, Tuesday, February 10, 10 pm EST.