Photo credit: gowish.org

When your life work is focused on projects that one presumably assumes will help make the world a better place, it is nevertheless rare and therefore most precious to actually see or hear directly the positive results of your work. So it was on a project that my partner Craig and I were working on with Coda Alliance while creating an online version of a wonderful game that they had developed exploring end of life issues. In the process of moving the game “Go Wish” to an online environment, we had more than a few opportunities to work with groups of people to facilitate the use of this game.

By way of explanation, Go Wish presents a deck of cards with very specific concerns listed on each card like: “To be free from pain”, “Not being short of breath”, “To have my financial affairs in order”, “To die at home”, etc. In playing Go Wish, each player sorts their cards into categories of “most important”, “somewhat important”, and “not important”. The goal is for each player to come up with their ten most important cards. In this way, the player is able to discern their own end of life, or perhaps more accurately, “quality of life” concerns, decisions, and priorities. Such an exercise becomes an important first step in creating an advance care directive, which gives a person the ability to help doctors, family members, advocates, and other caregivers make decisions that best represent the person’s own desires even when that person is no longer able to verbally communicate. For example, a living will is certainly a necessary but not fully sufficient component of an advance care directive. This is all tough stuff for individuals and families to address and hopefully, tools like Go Wish make this conversation a more comfortable and productive process.

My story continues a month after we had done one of our game facilitation sessions where we invited a group of people to sit together, create sorted stacks of cards for themselves, and then discuss their “most important” stacks with others at the table. As always, it was a powerful experience and everyone who attended insisted on taking their decks of cards home with them, to keep, or to share with someone else.

A woman came up to us a month later in tears saying, “Thank you, thank you, thank you”. It so happened that after attending our session, she showed Go Wish to her mother and left her with one of the decks of cards. A week later, the unspeakable happened. Her mother got seriously ill and fell into a coma. Unable to communicate her own needs and wants, her children were faced with making tough health decisions for her. As one would expect, it was easier to project one’s own desires into the decision process than it was to imagine what the now non-communicative patient wanted. It caused much frustration and argument among the family. It was in the midst of this that they found the Go Wish card deck along with sheets of paper in their mother’s own handwriting where she had carefully listed the concerns that she wished to be part of her advance care directive. The calm and methodical voice of their mother, through her own writing, communicated what her children now desperately needed to know.

A little closer to home, my mother-in-law, Muriel, had made it very clear that she did not want to spend the rest of her life connected to machines. When she was terribly ill and falling into a coma, doctors at the hospital said that her kidneys were failing and she needed dialysis. We asked if dialysis was a temporary emergency measure or if she would have to have dialysis for the rest of her life. The doctors told us it was probably just a one-time treatment to restart her kidneys. Because the entire family clearly knew her wishes, we were able to agree to let them do the dialysis.

It is stories like these that made me glad that a section called “Advance Care Planning Consultation” was included in America’s Affordable Health Choices Act of 2009. It is with frustration that I now look at the very real possibility that this may be removed simply because either in ignorance or in a deliberately convenient misrepresentation of facts, end-of-life consultation has been misinterpreted to be seen as “death panels” in the cause of killing the creation of a workable national health care system. This is a major disservice in two ways. First, it is distracting and derailing any real opportunity for honest dialog that should be occurring with respect to our national health care challenges. Second, it is causing national health care advocates to feel that advance care planning consultation is now a hot potato that can no longer be funded or even rationally discussed. This is undoing the ongoing good work of organizations like the Kaiser Family Foundation, Coda Alliance, and others. But more importantly, it is making it less likely that more families will be adequately equipped to know their loved ones’ wishes for medical treatment when they are no longer able to speak for themselves.