The Power of Video Wishes and Updated ACP

Talking about illness, injury and death is hard. It’s human nature to resist acknowledging mortality. We think we have time, until we don’t. As someone who works in health care, sits on an ethics committee and supports seriously ill and dying humans as a death doula, I repeatedly see death denialism in action.

When my niece was diagnosed with terminal cancer at 28 years old, she knew she needed to make some decisions. But filling out advanced directives was too hard, because there were too many “what ifs.” What she did know was WHO she wanted to make decisions for her if she couldn’t speak for herself. She wanted to name her husband as her primary Medical/Health Care Power of Attorney (MPOA/HCPOA) and her mother as secondary. The form was quick and easy to complete. And then no one felt they needed to talk about the “what ifs.” When she experienced an unexpected seizure a few weeks later and for a brief time that she was not conscious, it became clear that the family did not really know what she wanted. Gratefully, she recovered, and I was able to facilitate conversation over the weeks and months to come regarding what she would and would not want done as her disease progressed. While she never completed her advanced directives, she recorded a video about what she thought and what she wanted done for her and what she did not want done for her.

In conversation with many of the physicians I work with, they tell me that if they could have one thing it would be for every patient to have a current Medical/Health Care Power of Attorney (MPOA/HCPOA). I often play devil’s advocate and ask “so you have someone to speak for the patient but what if your patient has never talked with this person about what they would or would not want for medical care? What about advanced directives/living wills?” Generally, I hear “there are too many scenarios, we just need someone to talk with about what the person would want in a given situation.” I believe in the patient having a voice in what they want and if the advanced directive conversation is too hard to complete, what about a video? A video that gives voice to the person who otherwise is unable to speak in this exact situation. When I have shown my video to physicians they tell me, “now that’s valuable.”

I use Thanacare to complete MPOA/HCPOA, establish Video Wishes, and complete advance directives. Then, I share this all with the person’s family, friends, and health care providers to build alignment and understanding of a person’s wishes. I am grateful that the Thanacare app offers the option for the MPOA/HCPOA and the video as a starting point for my clients to begin to make decisions and have discussions which can lead to a more robust document with advanced directives when they are ready.

When you converse, “You can’t always get what you want…But if you try some time, you might just find you get what you need.”

To learn more about Keri and her work, visit Living and Leaving

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