4 ms·
That's not how I read the article. I read the article as stating that, even though you have final control, there are so many players and agenda's and sudden dec
by wjnc 14y ago
That's not how I read the article. I read the article as stating that, even though you have final control, there are so many players and agenda's and sudden decisive moments, that you still only have a weak grasp on events.
In my opinion, awareness is key. Talk to your spouse and/or parents, primary physician and write stuff down. Make sure (like the mother in the story) that you Know you have a choice and that you and your supporters are able to voice that choice.
- jtheory 14y agoThis was my take, too -- there are lots of players, many of them have strong incentives that are misaligned with many patients' priorities, and for a patient and their caregivers to even understand what decisions will help them have the end-of-life care they want is quite difficult. Even when the patient has really good advocates who have the expertise required (like their primary care physician in the article), the system is so fragmented that very few of the professionals involved in these decisions talk with each other... so the advocate may not be able to help at all at the critical moment. These are hard problems to solve; I'm proud to be working on part of the solution (the fragmented patient record and broken communication), but there's a lot more needed before this kind of experience will be a thing of the past.