July 12th, 2020
Two things to look at here. One, how do we enable a conversation between family and a dying person and healthcare providers that is truly transparent and open and honest with all the facts and details? A lot of times you hear that the family wanted an extreme measure taken when actually that wasn't the case if they had had all the information.
How do we enable people to get the information that they should have need and then engage in a dialogue?
And also, it seems at end of life that the person whose life is ending is getting their desires ignored. I went to visit a friend who was in a beautiful hospice facility, where they did a great job, and by the time I got there he couldn't really communicate much. You couldn't really understand what he was saying. When I was in the room with him, his wife had left, and for a few minutes we were alone. He said something about my shoes that I couldn't understand, and he was pointing at my shoes. I said, "you like my shoes?" He kept trying to say something, and I said, "do you want my shoes?"
He said, "yes."
I said, "why do you want my shoes?"
And he said, "I want to get out."
Here was a guy who in this moment was speaking what he wanted but he wasn't getting what he wanted. It's not where he wanted to be. So how do we enable a process where there's a genuine and direct conversation about what will work.
Transparency and an honest attempt to hear the individual who is at end of life, how do we actually and truly enable them, regardless of their situation to say, "let me decide". Because I don't think we do that, and when I say we, it's not even the healthcare system. Sometimes it is the family or friends. But we often ignore the part that matters the most.
July 14th, 2020
Speaking as a physician, a lot of responsibilty falls on the medical profession. We have largely failed the public in this regard. We're making slow improvements, but we need to remember the ancient medieval goals of medicine are to cure sometimes, to relieve often and to comfort always.
Medicine has been so successful that we now think we can cure frequently, relieve usually, but when we can no longer cure nor relieve, we forget about the comfort part. That's a major part of care for patients facing end of life. We have to be humble about the limits of medicine and not try to over-treat patients with treatments that are not going to help them, and we need to stay focused on their specific needs, many of which are physical symptoms like pain, nausea or shortness of breath.
We also need to address the needs patients have in the interpersonal and even spiritual ways. Physicians themselves don't do that care, but they need to be part of a team where there are others who help to address the existential needs that patients have.
August 14th, 2020
By taking a proactive stance, thinking of it as a service that we all need and deserve the best of. In a sense, we're inhibited by our inability to imagine care and experience through the very end of life. On the one hand, we can't imagine how bad dying can be. Those of us in clinical professional roles get to see up close and personal way too often people dying really badly in places they would not want to be and in being cared for in circumstances that that they would have declined had anybody had a conversation with them. But in general, we just avoid it and don't have those conversations.
On the other hand, it's hard because people have a difficult time imagining what dying well looks like, imagining that one can be well cared for honored and celebrated, symptoms well managed, and have a chance to complete a life, not just have it come to an end. The human potential for well-being, subjective sense of being well within oneself, and being right with the world and with the people you love, really is achievable more often than people imagine. So by taking a proactive stance and knowing what to ask for and what to do when you're not getting it. We can all have and accomplish much higher expectations.