I’ve been privileged to work with one Boston hospital to better understand what patients and families need to know about advance directives, a record of a person’s wishes for care in the event of an accident or at the end of life.

One of the challenges of doing advance care planning is that no one—medical professionals, patients, or families—wants to talk about death. Through being involved in this work, I discovered that there are quite a few parallels between working in the realm of advance care planning and working in suicide prevention:

  • Both are stigmatized issues,
  • Effective work in either of these areas involves motivating people to talk about something that makes most of us very uncomfortable, and
  • It’s important to maintain a focus on talking about something that, though hard to talk about, is better to talk about before there is a crisis.

If we do advance care planning well, individuals who are in crisis and the loved ones involved in managing care have a map for what to do—which is incredibly reassuring when everything feels uncertain.

When I read Mark Lukach’s beautifully-written and heart-wrending story of he and his wife Giulia’s experience with mental health care, I was moved by the idea that we could create the equivalent of an advance directive for mental health care.

Called “Mad Maps,” these documents allow people experiencing extreme emotional distress to map out answers to questions that can help them and their loved ones make decisions about treatment that are grounded in a personal definition of help. Mad Maps originate from the knowledge that rights to make decisions about care and treatment are often taken away from people experiencing mental health crises. Having something in writing, composed before a crisis occurs, allows for people to truly take part in decision-making about their care and for others to trust that the actions taken are those that their loved one would have wanted.

Some of the questions for consideration on a Mad Map:

  • What are our triggers?
  • How do we cope with them so that we don't get lost?
  • What has been helpful in the past and what has not been helpful?
  • What medications have worked, which haven't and how can we come off if we don't need them anymore?
  • How can we build the life we want to live?

I imagine for some people an answer to the last question could be hospitalization, while for others that outcome would not be on the path to building a new life. I can see how powerful it would be for someone who’s been on medications for years to be able to say, “These are the ones that didn’t work and I don’t want to try them again.” And, in a time of clarity, it seems like it would be very helpful to identify triggers and positive ways of coping.

What’s most compelling for me about the idea of Mad Maps is that they put the person first. Underlying Mad Maps is the premise that a person struggling with mental health should have more of a say in the treatment in which they engage and that they receive.

With this kind of foundation, the doctor/healer/therapist’s job is to listen to people and help them do what they want to do. This approach has historically been challenging for mental health practitioners, not to mention medical practitioners in general. But, imagine the impact on people who have had their own voices stifled as they’ve worked to articulate their needs.

Would you use a Mad Map for yourself or a loved one?

Copyright 2015 Elana Premack Sandler. All Rights Reserved.
 

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