Consider the Conversation: a documentary on a taboo subject presents an insightful look at the American struggle with communication about and preparation for end-of-life issues. This film provides a warm way to open the door to those conversations, with interviews featuring leaders in hospice care, religious leaders, medical professionals, and people who faced the ends of their lives on their own terms.
The documentary opens with “man on the street” comments by a wide range of men and women, young and old. The question must have been, “Where would you rather die, at home or in a hospital?” Every single person said they’d want to die in comfortable surroundings, preferably at home with loved ones. They don’t want to die in a hospital or nursing home surrounded by strangers.
And yet, how many of us have a conversation about what we would want at the end-of-life? It’s a hard conversation to start. Consider the Conversation provides a gentle, intriguing way to enter that conversation. This is not a film about death, but about living life to its fullest up to the very end.
It opens with a short history of death – a high infant mortality rate and adults died young — an average age of 48. Most died at home surrounded by family. Now families are scattered, people live into their 80s or 90s with increasing medical issues, and the hospital has become the place to die. Yet kids, and even patients, are protected from the reality of death.
Talking about death and dying doesn’t cause death. “There’s this thought that if we do talk about it, we’re going to somehow jinx the powers in the heavens and we’re going to bring it about sooner,” said Rev. Dale Susan Edmonds with Talk-Early-Talk-Often.com.
Throughout Consider the Conversation, old home movies are interspersed between the interviews, adding a beautiful shade of nostalgia to the visual aspect of the documentary. Besides all the great commentary by experts, the stories told by those facing end-of-life provide deeply compelling reasons to start talking.
Pete Kaldhusdal, a computer programmer with stage 4 pancreatic cancer, spoke about how throughout our whole life, we always know what’s next and look forward to it – going through grammar school, junior high, high school, college, and on into adulthood.
“But you always know what’s next because you can see everyone else that’s ahead of you. You can see the people that have done this before you,” Kaldhusdal said. “So then suddenly someone tells you have terminal cancer… There is a what’s next, but it’s not a guaranteed what’s next.”
“Suddenly none of those things are working and then you’re sitting by yourself in the what’s next chair, and you’re saying, well, I don’t know what’s next now. I have no idea what’s going to happen to me. If what’s next ends tomorrow, where am I going to be?”
Ira Byock, MD, a leading proponent of hospice and palliative care commented, “On the one hand, we have people who want to die with their boots and their lipstick on, and on the other hand, we have people who accuse those of us who work in ICUs and in hospitals and in hospice and palliative care of somehow promoting a culture of death, because we allow people to die gently, not forcing them to have CPR or feeding tubes or undergo dialysis before they die.”
“And I would submit that the only thing that connects those two very opposite, if you will, poles of passionately held belief is a distrust of the healthcare system and the doctors and nurses who work in it. People are worried about having their lives under-valued or being somehow caught up in a medical-industrial complex that isn’t attentive to their personal needs. ”
Martin Welsh, MD, a 55-year old retired doctor who had ALS, spoke about working with his patients on end-of-life issues and preparing for what he himself will face. He has made it very clear that he wants no therapy that will prolong his life and suffering when he can no longer eat, drink or breathe for himself.
“As much as I have stayed focused on what I am still able to do, it has become harder to ignore the things I am losing,” the narrator spoke Welsh’s written words. “Today I find myself facing the kinds of quality of life issues I discussed innumerable times with my patients.”
“The fundamental question is always this: At what point is the quality of life no longer worth the emotional and physical costs of maintaining it? I am not afraid of dying or death – that is a wonderfully comforting thing for me right now. I have seen so many good deaths in my time as a physician that I know that this passage can be peaceful, spiritual, and even comforting for those left behind. I hope for such a death.”
Welsh suggested a way of knowing when one is ready. He suggests the List of 100 Things – a listing of every day activities that one does, from getting out of bed and walking to the bathroom, answering the phone, playing golf, brushing teeth, writing and mailing a letter, hugging a child, and so many more. Taking away one, or two or seven or 23, life is still worth living.
When you’ve got to the point you’ve lost 90 things and bad things are added, life is still worth living, but you’re getting tired. When it gets to the point that the burdens of living outweighs the joys of being alive, this would be the stage when he as a doctor would assure his patients and their families that they had fought the good fight and it was okay to accept moving to the next phase.
He worries about keeping people alive with feeding tubes and medical technology beyond any quality of life. “I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don’t want to go,” Welsh said.
“I am determined not to start down that path, even if others think I am being premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that as I face my diminishing list of 100 things that make life worth living, the choice of quality over quantity has to be mine to make.”
Consider the Conversation was produced by Mike Bernhagen, a long-time educator on hospice care, and Terry Kalhusdal, a State Teacher of the Year and filmmaker. Motivated by their personal experiences with loss, they joined forces to create this inspirational documentary on a difficult subject. For links to resources, a discussion guide, and other articles regarding end-of-life care, visit www.ConsidertheConversation.org.
Watch this very moving documentary and have a conversation today.