What if I don’t know who could be my advocate?

The Death Positive Movement is zooming! I am being asked to speak in all kinds of venues: Senior Groups, Libraries, Cemetery Boards, congregations. The recent Advance Care Planning  presentation was jam-packed and vibrant. Everyone wanted to know about End-of-Life Doulas. Curiosity leads to wonder and respect and recognition of the importance of this role in helping individuals who are facing death and the families who are caring for them. Learn more here.

We had 29 people at Death Cafe last week! Our biggest ever, with 14 new people. The conversation really opened my heart in new ways as people shared candidly and honestly. We all remarked about how “real” it was. One of the biggest challenges I have faced recently is how to advise folks who don’t know who to choose to be their healthcare advocate. An advocate is someone who will speak for you if you become incapacitated. They need to know what you would want, what gives you quality of life, what you would be willing to sacrifice and what you would not. This requires conversation, not just once but multiple times, and each time your healthcare situation changes. There are a large number of people over 65 who do not have a life partner nor children and for whom it seems there is no obvious choice of advocate.

These are precisely the people for whom it is most important to have an advocate! It’s a difficult situation. Is there a co-worker, neighbor or friend who you could talk to? It doesn’t have to be permanent; you can revoke your advocate and choose another if your situation changes and someone else can step into the role. The most important thing is to choose someone and to discuss with them the following:

  • Are they willing to speak up for you, even if they don’t agree with your choices?
  • Will they be available?
  • Can you talk to them about
  • What quality of life means to you?
  • What you are willing to sacrifice and what you are not?

There are professionals out there who will be your advocate for a fee. But first consider if there is someone you know who is willing to take on this responsibility. Write it all down. Write them a letter in a narrative format so that they can hear your voice if they are ever in the position to have to speak for you. An Advance Directive form, with it’s standard check boxes that are not personalized, isn’t enough when life and death situations arise. Include in your letter what a good day would look like and give them permission to forego further treatment if that good day is unlikely to ever be able to be achieved again. The consequences are too high to NOT do this. Tell them you know they will do the best they can and then say you forgive them. Thank them. This is a big job. But if you can’t speak for yourself, do you really want a doctor who doesn’t know you to make these decisions? Or worse yet, an ethics committee? Better someone who knows you and has talked these things over with you.

And then hopefully it won’t be needed. But hope is not a good plan.


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