Terminally Ill and Homeless: Saving A Death
We all live in fear of that moment. You know the one - when your nice, but kind of formal, doctor rolls over on his stool to tell you the results of your biopsy. Before the words even leave his lips, you know. You know it's bad, and your brain flees, backing away into a deep, silent corner. Only the words incurable and cancer slither into the darkness where your thoughts are hiding.
The night after such an experience, you feel stalked by fears. You cannot sit still; your thoughts dart and flee, trying to avoid being taken down into sheer and utter panic. Hissing recriminations, pounding regrets, a smothering pang of longing for the world to be different - these are the monsters that come out that night.
So what happens that night if you're homeless?
If you have no home, your bed for this night of stalking horrors is layers of cardboard flattened onto rain-splattered concrete. You toss and turn near puddles that shimmer with gasoline. There is no special place for you to go.
Dr. Barry Zevin had to break this kind of bad news to Carlo Sanchez late last year and watch him head off to his "home'' - a sidewalk in San Francisco's Hayes Valley. Weeks later, not knowing any of this, I met Carlo while doing research for my USC Annenberg/California Endowment Health Journalism Fellowship. I gave Carlo a cellphone and asked him to take pictures of his life. Almost in passing, I asked about his health, and he told me he had incurable liver cancer. You can meet him, and see the moment, three minutes into this video.
Carlo's story has haunted me since. He was a man of considerable dignity. I had been wondering how he was managing the slow process of dying in full view.
I didn't expect to find out. So I was surprised when Zevin sent me this email out of the blue, three months after I met Carlo. It had a single ominous word in the subject area: Death.
Getting a cellphone had the unexpected effect of getting Carlo re-engaged with his family. He died at his sister's house with numerous family members on hand. This was a good thing.
You may be thinking, hey, what's the big a deal? Carlo wouldn't actually have been left to die on a sidewalk. Not at the very end. Would he?
Homeless people do often die outside, in plain sight, of a diagnosed terminal illness. There are many reasons why.
Sometimes it's because beds for longer-term care are full, with long waiting lists.
Sometimes it's because of the difficulty of staying in touch with a sick homeless person.
Sometimes it's because the habits and social connections and behaviors that trapped someone into homelessness make a stay in a shelter unworkable. (Shelters can be difficult places to live, even without a terminal illness.)
Even if a hospice bed becomes available, some people choose to die on the street because they can't adapt to a strictly structured nursing facility. Still others don't want to leave a companion or a support system of friends. It is a modern Sophie's choice. Would you rather die surrounded by strangers in a medical facility or in an encampment surrounded by friends?
But can't a doctor just admit a dying person to a hospital? Under our current reimbursement model, doctors cannot admit someone just because they're dying and homeless.
A homeless person with a terminal illness knows that the outlook is grim. Studies have shown that homeless people have unique fears about death -- specifically that they might die alone and anonymously. Given the high mortality rate for the homeless, and the disproportionate numbers of homeless among the unclaimed dead, these fears are valid.
When I found out that Carlo did not die on his sidewalk, but instead in a home, with hospice care, surrounded by family, I felt that a great weight on my subconscious had been lifted. I did my residency in San Francisco during the holocaust years of the AIDS epidemic, before retroviral therapy. My training during those years made me believe passionately that a good death is worth fighting for.
Zevin was gracious to credit my cellphone project to helping save Carlo's death, but I know that it was, at most, a minor tool. Typically, it takes a team of persistent, passionate provider advocates to assure an outcome like Carlo's. Yet the time-intensive tasks required to save a death are not generally viewed as a valid use of resources, either under our existing reimbursement system, within proposed accountable-care models, or under an evidence-based practice approach. (Watch this video for Zevin's and Carlo's family's perspectives on his last days.)
Dying on a street with a diagnosed terminal illness isn't considered a medical error. But I believe it should be. A predictable death, with physical and emotional suffering drawn out over months as a person lies in plain view, is a failure of our healthcare system. Like other medical errors, it typifies a system failure that could be fixed if resources were devoted to it. I believe it should be a "Never Event," similar to wrong-site surgery.
But to label it that would require a fundamental philosophical shift. We would need to recognize that all deaths are not equal, and that a good death is a measurable success. We, as a society, would need to prioritize a resource allocation that is, by definition, never going to be cost effective.
It's not impossible. As a society, we often devote resources to things that are not cost-effective. Prisons are just one example.
In the end, the question is, what is saving a death worth? What do you think? Is saving a death a worthwhile use of scarce resources? Should dying on the street with a terminal diagnosis be listed as a Never Event? Sound off in the comments section.
Photo credit: Franco Folini via Flickr