Because abstinence isn’t an option.
With hours to go before OpenIDEO’s End of Life Challenge’s Ideas phase finished, palliative care physicians and long-time friends Dawn Gross and Jessica Zitter dreamed up a class that would be taught in high schools: “Like sex ed, but for death.” I chatted with them one morning in Oakland to hear more about their approach to death—and life.
JZ: As one of the only doctor parents in my children’s school, I was asked to teach sex ed. I had no idea how to do it, and I worried that the kids would be uncomfortable and difficult to teach. But I was wrong. Aside from a few uncomfortable moments in the beginning, they were fascinated by the topic and eager to learn more. Once we melted away the taboo, the discomfort, we could settle down and get to the work that needed to be done.
I believe this is also true for the taboo of death. We shy away from it, consider it impolite conversation, upsetting for children, for all of us — and so we don’t learn how to manage ourselves during this critical phase of our lives.
DG: During my first year of medical school, a project was just being developed to support prenatal education for a local high school with a very high population of pregnant teens. I began teaching some of the courses and then volunteered to further develop the curriculum with three other classmates. Later, during my training as a hematologist (a physician whose specialty is diseases of the blood), I began to encounter death on a near daily basis. Yet none of my colleagues were talking about this.
I found myself drawn to having conversations around end-of-life. I wanted to understand why people wanted to live and what really mattered to them instead of assuming I knew. And it is an honor to get to be present for these conversations.
What can Sex Ed teach us about how Death Ed might work?
JZ: Looking at the history of sex ed, it has tremendously changed behavior. As soon as we started to bring this into the public education system and really explain to people about pregnancy, sexually transmitted diseases, intimacy and decision-making about intimacy, people became empowered from that conversation. Behavior has changed.
Death, like sex, is shrouded in taboo and myth. And, similar to sex: knowledge exists.
While we can’t provide a crystal ball, we most certainly can provide a roadmap complete with sign-posts, rest stops, and detours — as well as potential carpool lanes and junctures for alternate modes of transportations — as one thinks about and approaches death.
How might the iconoclastic nature of teens help with this?
DG: Teenagers love the opportunity to rebel against what’s taboo. They also really appreciate being spoken to straight. They have the questions, whether it’s about sex, dying or drugs — you name it. The questions are there. So the possibility of harnessing the energy that already exists, and really using it to their advantage…we get to say, “Yeah, we’re going to talk about some uncomfortable stuff here. Show us how. Cause you do it all the time!”They’ll lead us.
What’s next for Death-Ed?
JZ: We’re in the process of creating pilot courses that will launch in January 2017. We have one high school secured, and another two interested. We hope the pilot data will show that students are not only receptive to this material, but want to learn more. We hope that they will come out of the pilot inspired to be in conversation with their peers and their family.
Ultimately, we hope that when we really begin to implement this as a full curriculum, the data will incontrovertibly demonstrate that this type of learning is as powerful and essential as general health and sex education, and it will become the norm for all public education.
How can media help normalize these conversations?
JZ: Dawn does this amazing radio show which we love, called Dying to Talk, on KALW. And I do a lot of writing [Jessica has written for The New York Times Well Blog; her forthcoming book, Extreme Measures, comes out in February 2017]. I felt that adding the medium of film into the picture, to have people see and witness what is actually happening, was important. Not ER and Doctor McDreamy and Grey’s Anatomy, but what’s really happening in an ICU.
What are the limitations of medical care? Especially in the space of certain death, of everybody. I think people can fall into a fantasy of perpetual life, by pegging healthcare as the save-all. So I found a wonderful documentary filmmaker, Dan Krauss, and he came in and made Extremis, this unbelievable film which we are incorporating into the Death-Ed curriculum.
Is it possible to die a “good death?”
DG: I avoid that term. I prefer to think about death being on someone’s terms. People make birth plans, they make wedding plans: we want these things to go a certain way. And then life happens. So how do we support people in aspiring to ideal — and then allowing life to happen and being okay with that? Being even better than okay.
Something I say a lot is actually that death is for the living. I have cared for thousands of people at the end of their life. And have yet to hear any one of them come back to me and tell me how it went. I have NO idea. It looks like they were comfortable, to the best of my ability, but I really don’t know. What I do know is how it went for everyone else watching. For the moments, the hours, the months, the years: watching. And that’s the legacy that we have the opportunity to influence. “Good” is relative. Did it go the way you wished it could? That’s what matters to me.
JZ: Coming from the ICU: we get in the way of death. Good or bad, we just get in the way — and we can make it worse. So my bar isn’t necessarily to get to a good death — although if we could all get to that place, that would be the ideal goal. But I don’t want us to interrupt and add so much burden and suffering to death. We don’t have to do that. Let’s stop interrupting.
What are your hopes for the future of death and dying?
JZ: There is so much low hanging fruit. There’s so little knowledge about death and dying in our society: just a little bit of education, I think, is going to go a huge way. And I think people are going to start having much more beautiful deaths. I’ve seen many, many terrible deaths. I’ve also seen many wonderful deaths. I believe that we can bring more and more people into a place where they can experience the death that they would want. And live the way they want right up until the end.
DG: The real key for me is people living fully — until they don’t. And for medicine to get out of the way of that. We spend a lot of time interrupting people’s lives: getting in the way, of precious time. The real key for me is that death falls into the natural circle of life: Of birth, and growing up, and honoring all of our wisdom and experience — and reclaiming what we know how to do.
We know how to give birth. we know how to feed ourselves. And we know how to die.
There are plenty of cultures outside the US, and some that are coming back into the US, that really know how to honor this, and to continue the legacy of the lives that we’ve known, that have touched us. Medicine has diminished the relevance of some of that ritual and the beauty of it. And I think it’s time to reclaim our humanity.
Read more stories about the people, ideas, and moments behind OpenIDEO’s End of Life Challenge.