Last week HealthAffairs.Org featured a series of articles on Alzheimer’s disease including this powerful first person account by The Conversation Project’s co-founder, Ellen Goodman, about discussing end of life wishes with her sister. In the April issue, Ellen recounts the terrible choices and harsh reality of the illness at the end of her sister’s life.
Below is the complete article, or view the entire Alzheimer’s Disease issue of Health Affairs.
This post is published in conjunction with the April issue of Health Affairs, which features a series of articles on Alzheimer’s disease.
I cannot write about Alzheimer’s disease without writing about my sister. For that matter, it is probably best to begin with the building where the word was first said to her. After all, my sister Jane was an architecture critic and buildings mattered to her, as did the urbanscape, and her whole vision of a people-centered city.
The building where she’d been diagnosed with “mild cognitive impairment” was a former military base now recycled into a labyrinth of medical offices, including the department where the people who clocked and studied—but could not curtail—the decline of her memory were lodged with their pencils and papers.
To get to the office, we had to drive into the imposing parking garage, take an elevator to the only floor where there was a bridge to the medical building, cross that bridge, then take a second elevator downstairs to register, get anelectronic key, then ride upstairs again and find our way through a mysterious series of halls to the right door and unlock it.
This elaborate rite of passage never failed to strike me as a bizarre test in itself. Who designed this? What memory-impaired patient could remotely navigate this journey? Was this some sort of black humor, a way to triage those with or without the “executive function” to get there? Those with or without a caregiver who could lead her?
We had made this trip repeatedly. My sister, who had gotten 700s and 800s on her SATs and graduated from Radcliffe magna cum laude, would sit in a room, subtracting by seven, judging spatial relations, and repeating dates. The slow decline on those tests didn’t begin to show the behavior we saw in real life. They didn’t mark the deteriorating house, the bills unpaid, and the struggle to find her way to my home. Nevertheless, she would say pridefully, defensively that there was nothing to worry about. Everyone her age (70) had trouble remembering stuff. Her biggest worry was finishing the book she was writing on the environment, already named “Last Chance Landscape.”
The Day The Doctor Used The “A” Word
On this day, though, a new doctor finally used the “A” word. I felt a lurch in my stomach—a mixture of relief and electric shock—to hear the word that had been hanging in the air for well over a year. At last a third person, a doctor, named it. The doctor didn’t ask her what she had heard, what she thought or felt. There was no “conversation.”
Jane didn’t react until we made the reverse trip, down the hall, returning the key, up to the elevator across the walkway, and into the car.
At that point, she said flatly, “I guess a lot of people have Alzheimer’s.”
“Yes, I guess so,” I said.
“Well, I don’t feel any different.” She wouldn’t say any more.
When I got home, I told my husband that finally Jane had been told and finally she’d understand. Surely we could talk about it. Surely we could make some plans for her care. But of course the next day, she didn’t remember. After all, she had Alzheimer’s.
The Conversation Project
I tell this story of my witty, stylish, and lively sister because it strikes at the heart of one motto that we have at The Conversation Project. When people tell us—and tell themselves—that it’s too early to have a conversation about their wishes for end-of-life care, we tell them another truth: “It’s always too soon until it’s too late.”
We started The Conversation Project as a public engagement campaign to have everyone’s wishes for end-of-life care expressed and respected. We hope to change the cultural norm from not talking about our wishes to talking about them. We also believe that we need to engage people in these conversations at the kitchen table, with the people they love, before there is a diagnosis.
These days, overwhelming majorities of us know that it’s important to have the conversation. The survey we did last fall showed that over 90 percent of Americans agree. That’s huge. Ninety percent of Americans don’t agree about anything, even the national anthem. Yet only 30 percent have had this conversation. Is it too soon?
End-Of-Life Care For Dementia Patients
Lauren Nicholas and her teams have done a huge service in the research published in the April issue of Health Affairs that shows how important advance directives are in making decisions about health care for patients with advanced dementia who live in the community. Having a living will was associated with significantly less aggressive treatment at the end of their life. Treatment that, as the authors note, may be unlikely to either improve their quality of life or the course of this terminal disease.
Yet what struck my eye forcefully was the concluding sentence, suggesting the need for “timely advance care planning after [italics mine] a diagnosis of cognitive impairment…” As the authors say again, “Efforts to engage family members in advance care planning when cognitive impairment is first diagnosed [my italics] …might help ensure that a surrogate decision maker is identified and informed about the patient’s preferences while these conversations are still possible.”
Now maybe, maybe, some few people are able to have these conversations after a diagnosis of “cognitive impairment.” No health care provider asked my sister if she had an advance directive. No provider started a conversation about her wishes or described the trajectory of her fearful disease. Jane, for her part, was in full flight from the fearful possibility.
Experience tells me that after a diagnosis it is far more painful, difficult, and frightening to have a conversation. “After” a diagnosis? It’s too late.
If there is one reason to have these conversations early, one reason that looms over the worried well, it is the realization that when the time comes, we may not be able to decide for ourselves. That worry is well placed. Studies suggest that roughly 70 percent of us will be unable to make decisions for ourselves at some time in life.
This fate happens to young soldiers at war and to young civilians like Karen Ann Quinlan or Terri Schiavo. It can happen to a healthy person lacing up sneakers for the Boston Marathon.
But it happens mostly with age and the onset and advance of dementia. Dementia in its Alzheimer’s form or any form robs us of control, of being able to understand and therefore make decisions for ourselves. Indeed it often robs us of ourselves so that the person who says, “I don’t want to live like that” becomes a person living “like that.” Moreover, it may well leave our survivors guilty, depressed, and uncertain in making decisions toward the end of life, wondering if they did the right thing.
The Conversation Starter Kit
When we bring The Conversation Project to health care providers and to communities, we bring along red-and-white-checked tablecloths as symbols of the need to have those conversations around the kitchen table, not in the doctor’s office, or the ICU. We spread the tablecloths and talk through our most important tool, the Conversation Starter Kit, designed to make the conversation easy, or at least, easier. We want to make doctors as well as patients think about their own wishes.
We ask about values, about “what matters to you,” not “what’s the matter with you.” We know that people cannot make every medical decision in advance but they can guide this journey, sharing how they hope to live as they come toward the end.
The truth is that dementia presents us with so many dilemmas. One of the great ethical—or maybe existential—questions is how do we elicit or respect the wishes of someone who has disappeared into another person. I used to wonder this about my sister as time went on and she seemed contentedly reduced to cutting and pasting colors into deteriorating collages. And also when, angry and confused, she began to attack her caregivers.
Alzheimer’s is an awful disease, but there are often years when by many measures there is a quality of life. While my sister would have fought against it when her mind was intact, we had good times. We painted pottery, shared ice cream, and turned the pages of magazines. She had kind relationships with caregivers as well. She was not “herself” but she was among us. But Alzheimer’s is a terminal disease.
In my sister’s obit in the New York Times, I am quoted as saying she died from “complications” due to Alzheimer’s. That’s like saying she died of complications due to cancer.
My family was “lucky.” Jane had chosen a health care decision maker, her smart, protective, and caring daughter. We both knew Jane intimately and knew exactly what the woman who valued her intelligence over almost any other quality would want when Alzheimer’s, having taken away so much that mattered, would take away the rest.
Yet the final months were a painful tug of war with health care providers who didn’t always acknowledge the terminal in the disease. It was only when we called a hospice team that again someone stated the obvious: “Yes, she’s dying.” And ten days later, peacefully and compassionately, her life ended.
Studies don’t tell the details of family caregiving. They don’t tell the pain or the dismay of watching someone decline and being unable to protect someone you love.
If there’s one thing I’ve learned working with The Conversation Project, it’s that everyone—everyone! —has a story of a good death and a hard death. A story that often hinges on whether we had expressed our wishes while we could. And on whether those wishes were respected.
The Importance Of Advanced Care Planning
The thoughtful researchers of this piece repeatedly suggest the importance of advance care planning in curtailing the possibility of burdensome treatment. I think we are at a tipping point in recognizing that. I’m not surprised that doctors peg the conversation to the moment of “diagnosis.” It’s the moment they arrive on the scene.
But we all have the same final prognosis. As my favorite headline from the satirical magazine The Onion reads: “Death Rate Holds Steady at 100 Percent.” These are our conversations to have and to share.
Having lived through my sister’s last years, I have told my family my wishes. Listen up to plain old sentient, reasonably competent me: If I no longer know the people I love, do nothing to prolong my life.
Maybe that’s your wish. Or maybe you choose to live in any condition. Whatever your wish, pick your decision maker. Have the conversation. You see, it’s always too soon until it’s too late. Say it now. And hope that it will be respected.