You see an example of someone who kind of takes control. He has this great moment when he says to the doctor, “I know you’ll tell me when I reach the point that I can’t do what I want, which is to be able to still be at home and not in the hospital. I know you’ll tell me that, won’t you?” He was signaling in a very gentle way, “This isn’t the place I want to be, and at a certain point, I want you to have this conversation with me.”
The patient opened the door. He was very clear about what he did not want to sacrifice. You know, if things got bad, he wanted to be home. He wanted to be out of pain. He wanted to be with his family. He wanted to have that time on hospice.
You got to see how different that was from the woman who didn’t have that conversation until towards the very end. Finally, someone asks enough questions to find out that what she really wished for was that she could go to Disney World with her grandchildren. You’re watching, and you’re realizing that they could have given that to her. They could have made that possible for her, but now it’s too late, and it’s not going to happen, and it’s heartbreaking. To see that contrast is a lesson for me and my colleagues — it’s a lesson for all of us.
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One of the critical things to understand is that it’s virtually all of us who end up wanting to be sure that the goal we’re trying to achieve is not necessarily a good death but a good life all the way to the very end. The vast majority of people have concerns about the care they receive not being in alignment with what matters to them most. When that care is out of alignment with their priorities and goals, the result is suffering.