I have some terrible news: each and every one of us is going to die one day. I know, I know, but the research is clear and the stories seem legitimate.
Not that you would necessarily know it. We spend a lot of time and money avoiding death. We construct images of pain and severe suffering at the end of life: from cancer, from old age, from apocalyptic zombie takeovers.
But we also don’t really talk about death much, probably even less about the process of dying.
In my years researching, writing, thinking, and talking about death, one thing is abundantly clear: many people are experiencing very bad deaths.
So what do I mean by a bad death? For me, a bad death is one totally devoid of choice. Being in pain; being hooked to machines when you don’t want a breathing tube down your throat; having another surgery to deal with an infected feeding tube even though you don’t feel hungry; being without the people you love beside you; feeling like a burden to your family; wanting to try another round of chemotherapy even if others think it’s a waste of time.
Let’s pretend for a moment that you could decide every detail of your own death: the exact moment it would happen, where precisely, the people who would surround you, your favorite pet who would be there, even the song that would be playing. And perhaps most importantly, by what means. Unfortunately, we’re a long way off from this idea. As is, we offer people only three choices in how to die: 1. All available measures taken to sustain life as long as possible. 2. Limited interventions. 3. Comfort care. Three choices.
Dr. BJ Miller gave a great TED Talk called “What Really Matters at the End of Life.” He invites “design thinking” into the conversation about death; intentional, creative thought about this universal aspect of life. I’m RSVPing to that invitation. I’ll bring the guac.
The idea at the heart of my TEDx Talk is that we can make death much better simply by giving people choice Or at least more choice. And it really just starts with a conversation. The trick here is that anyone can do it.
Ninety percent of people in a 2013 study said they thought it was important to talk to their loved ones about their end-of-life wishes. Ninety percent! You know how many actually did it? 27% The value of talking about these things is well researched and firmly proven, but we don’t do it.
So I’m offering a model to help. It’s called The Choice Model, but it’s really just a conversation; “The Choice Conversation” seemed too much like a Pepsi ad, though. The Choice Model is intended for people facing a terminal illness and outlines three steps for a conversation with a provider. But in my TEDx talk, I try to train others in the second step.
The three components to the model are:
They’re all rooted in the theory of self-determination (and borrow from feminist rhetorical theory). Doesn’t matter.
What does matter is that this model has the possibility of helping every person who might ever die one day. And that includes serving populations who are marginalized, who are constantly at the mercy of the social determinants of health.
So let’s describe the three steps of The Choice Model. Remember, this is really just a conversation, and it should only happen after a patient has had some time to process a recent diagnosis and prognosis for a life-limiting illness.
Step 1: The Invitation
In this step, you’re just making space to talk. Or maybe more importantly, listen. This is actually easier for providers because they can now get reimbursed for having these conversations.
During this step, you’re there to ask questions:
- What matters most to you in life?
- What’s something you can’t live without?
- What are some of your fears about dying?
It’s not an easy step. And it may take a few conversations. As long as the emphasis is on listening rather than telling, this can be a really rich moment between you and the people you love and want to support during the dying process.
Step 2: The Options
I explain the nine options in the TEDx talk and in this flyer available on our The Choice Model website, including their pros and cons.
Choice 1: All Available Measures
Choice 2: Limited Interventions
Choice 3: Comfort Measures Only
Choice 4: No Care
Choice 5: Stop Eating And Drinking
Choice 6: Palliative Sedation
Choice 7: Physician Aid In Dying
Choice 8: Euthanasia
Choice 9: Suicide
My parents and partner were in the audience; they were so proud.
Step 3: A Shared Decision
In this step, patients and providers (or family members) decide which option feels best for the patient and make a plan for how to pursue that choice. That might mean a physician has to refer the patient to another state or country where the patients’ choice is legal (or decriminalized).
But that’s not a hard task to accomplish. The real question is how can we make both the information and the choices accessible to under-resourced populations.
So what can you do to help in this process? Start the conversation before you get sick; continue it and see what’s changed if you do get sick; and then choose the death you want. Because, let’s face it, you’re the important one here.
Know your options, share your choice!
Authored by Jeremy Make, JSI Consultant, Denver, CO