A recent article by Jessica Nutik Zitter in the New York Times discusses the begining of what could become a trend to engage students with issues of death and dying during high school.
I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. . . .
Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish. . . .
Last week, my colleague Dawn Gross and I taught our first death ed program in my daughter’s ninth-grade class at the Head-Royce School, a private, progressive (and brave) school in Oakland. In the classroom, we had some uncomfortable terms to get out of the way early on, just as I did in sex ed — death, cancer, dementia. We showed the teenagers clips of unrealistic rescues on the TV show “Grey’s Anatomy,” and then we debunked them. We described the realities of life in the I.C.U. without mincing words — the effects of a life prolonged on machines, the arm restraints, the isolation. Everyone was with us, a little tentative, but rapt.
After teaching the kids how to play ” Go Wish” a card game designed to help bring out the students own preferences:
Dawn and I walked out with huge smiles on our faces. No one had fainted. No one had run out of the class screaming. The health teacher told us she was amazed by their level of engagement. It is my hope that this is only the first step toward generating wide public literacy about this phase of life, which will eventually affect us all. The sooner we start talking about it, the better.
Let me suggest that this is perhaps the very best way to encourage patient partnering, not just at the end of life, but throughout it. Those who take “death ed,” will have had experience talking about the realities and about choices from an early age. They will have considered values and the different roles of health professionals, the family and the patient. They will be more willing to ask questions (at any age), to empower others to ask questions, and to object when those questions are not appropriately responded to. I suspect that in many families the students will end up as the facilitators of these difficult conversations because others do not yet have the skills to start them.
I would love to see some follow up studies of those who take these classes and whether they become better at communicating with their own medical professionals, even in the short term.
I would also like to see hospitals and clinics seeing it as part of their mission to expand these kind of discussions into a wide variety of institutions. I would only also emphasize that it would be a massive lost opportunity if the discussion was limited to the death process. The truth is that all the same issues lurk in many health processes. It is just that the issues are much starker when death is on the table.