This conversation isn’t easy, but I did it anyway : Engage with Grace
Adapted from http://www.tedeytan.com/2011/11/12/9573
I wrote this blog post during the 4th year of the of ”Engage with Grace” which is about having conversations to know the values of ourselves and our loved ones when it comes to end of life care, and end of life living, really.
What was different this time what that I did more than just re-posting the text that was prepared for us (and if you want to see that, it’s here), I am reporting after 4 years that in 2011 I have had the conversations. And I’ve had them in part because of this campaign, in part because of Suze Orman, who’s told her callers this year that they get an automatic “F” on their financial grade when they don’t prepare for those who come after them.
And….it’s not easy, starting with the conversation, and all the way through to execution. This conversation is co-mingled with the financial one, I don’t think they can be separated. The bummer is that once you have the conversation there is much work to do to document it. Some financial institutions make this process easy, many do not, it generates lots of paper. Paper that is not conveniently accessible, paper that’s hard to understand, hard to put on file with your health care provider.
However I did it. And I emerged with better knowledge of what those around me want, and documentation of what I knew in my head, but hadn’t codified. And a ton of dissatisfaction with the process and motivation to make it easier for others! I think the current state of the process is simply a reflection of what people like Alex Drane (the originator of “Engage”) experienced in her own situation – when these things cannot or are not discussed during the process of care delivery, they haven’t been discussed during the design of the care delivery system, either.
A search on iTunes for app to help out with this turned up nothing useful – interesting that out of 500,000 apps, not a single one about something this important. I also know from my electronic health record experience that this function is typically not as robust as ordering medicines, for example. Online, there’s just a jumble of PDF’s and word processing docs in arcane language…
I am just one person/patient and from my experience I learned:
- “Advanced care” is NOT “Advanced health care”. It IS “Advanced health care + Advanced financial care” – the two seem siloed from each other and they shouldn’t be. Where are the financial institutions / organizations in this conversation?
- I think there’s an assumption that the challenge is having he conversation about life and it’s end. I’m not sure I agree. The challenge for me is making it easy to act on that conversation.
Fortunately, as with everything I do or have ever done, it’s easy to find out how to solve these problems – talk to patients ant their families.
As I wrote on my blog, “The right answer is to involve patients in every decision.” And we don’t mean every health care decision they make for themselves and their families. We mean every decision that is made around how the health (and financial) systems are designed to support them.