Terminally Ill and Homeless: Saving A Death
April 04, 2011
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
Comments
Thank you so much for this
Thank you so much for this article. It is important that we see homeless as human beings and treat them with the inherent dignity of being human, even when doing so is incredibly hard.
any human being should be
any human being should be treated with respect especially at the end of life no matter what there station in life is i was a RN nurse for 37 years all in hospitals in florida/saved little money/spent a lot have 2 friends/a sistersomeplace but to late anyhow will become homeless but thru out my career i saw all kinds of people rich and poor they all looked the same at time of care you never know when your luck may turn everybody is dependent upon society believe it or not i tried thru out my career sometimes not hard enough but i tried one thing i made sure of would be my patient when the left my care they would be clean and have a clean bed so matter who you are someone even the homeless and alone may help you in a time of crisis for even the most happy/well to do people may are still dependent on society and especially when they are sick or injured and especially on their death bed if they are also dependent upon there fellow man/woman for care you reap what you sow just be kind/respectful to your fellow man and you will be rewarded with kindness and love believe me i have seen a lot as a nurse and what the Lord Jesus has taught me hope i will be forgiven i tried my best the Lord does not care what you do as a person but how you do it seen a lot of miracles be kind to the homeless/people alone or else
resources ??
Hello..
I am writing concerned for a guy named "One Eyed Clyde" , a homeless man I met through a friend who hooks him up with med marijuana. He has had already one tumor behind his eye burst, and there is another tumor where his eyeball should be. The doctors told him to live evry day like it's his last and he's homeless. We let him come over and charge his phone sometimes he will shower and shave but he never asks for anything!! EVER. He is kind and alone. He's not safe, and he would never hurt anyone. He sleeps in bushes until he gets cought, then its off on his bike again. He gets excited when his foodstamp card gets food money because he will not go through trash. Hes not the typical homeless guy and I wouldn't just say that. I actually kind of trust him. Please help mehel him. I live in Long Beach... 90815 if you could point me in the right direction that would be amazing. I just need the fastest housing possible at this point. God forbid, God forbid this man dies alone?, outside?, in pain? If only he had a safe place?? Even a room with a bathroom for privacy.
If I could buy his way the rest of his short life ... I totally would, and when I'm able, I will. #lifegoals
Thank you very much for your time!!
XO
Jaymie Boggs
Community editor here- that
homeless and critically ukk
You can't stay in a homeless shelter when you are in a wheelchair and need breathing assistance at night. If you take numerous meds. they will be stolen. You have no way to get clean or change clothes to go to a dr. I f you are Catholic such as myself, you are forced to listen to fundamentalist preachers and sit through services to get a meal against your religious beliefs. There are crazy dangerous people around you. If you are a woman you are at risk for being raped, especially if you are disabled. If you are on immune-suppressive drugs, you will contract hep A or some other deadly disease. I have googled for help in this situation, and all they talk about is mentally ill people, who don't get me wrong, need a lot of help, much more than they are getting. But you people have to realize that "transitional housing" and "homeless shelters" are a DEATH SENTENCE for the physically ill and disabled. That is reality, and there is no help.
Evicting seniors back into homeless (termialy ill )
I'm 69 years old and and I was homeless in the swamp , and the Step Up program that Hud Funds got my son and i a apartment, we are both.disabled, I can't walk, they said my son has too many friends coming over and were being evicted for it, we pay $ 750. They pay $500 , they no im dying, and we have no place to go, I'm hoping someone out there can help us, I don't want to be in the swamp ill die this time if u no where I can get some help to stop them from doing this, or where I can write get my story heard I believe this would stop this cuz when I said I'm going to the newspaper before we go of this place they got worried Ithey think I'm crying wolf, now, they don't want the public knowing they're not taking care of their seniors any suggestions please call or email me thank you and bless u all. Linda Parker, 9512698022, lindalate@gmail.com. ty☺
This article is important!!!!!! IM DYING
I'm homeless and dying.. I live on the streets and I never know when my time will come I'm hungry and exhausted. I tried hard to get help and get a home but on 709$ a month it's impossible to get the help in need. No transportation to doctors it's at the bottom of the list. It's hard trying to find food and a good spot to lay down at night. I had all the hope in the future but sadly it's not coming in time. PLEASE LOVE AND HELP OTHERS AND NOT JUST YOURSELF!! LOVE TO EVERYONE WHO HAS HELLPED ME. GOD BLESS YOU ALL
I'm dying
If you want to verify my story you are welcome to call me, and I have lots more to tell what these government employees have said and done, 9512698022, thank you for caring. Bless you all Linda,
I am 65 year old disabled woman living on front seat of my car
When you cant lie down at night (oh sure, I could lie down on the ground but it is 13 degrees outside tonite and it is not safe for a 65 year old woman to lie down on the street) your brain can't get the proper cleaning of neurotoxic waste products (I can provide scientific proof of this, plus I am losing brain capability after more than two and a half years of having to sleep sitting up on the front seat of my car due to landlords refuse to rent to me even though I can pay as much as $600/mo rent on my 1,000/ mo Soc Sec Disability check, because they have a STUPID RULE that "rent must be no more than a third of your income"). I cannot get my leg healed properly sleeping sitting up (broke it 6 mnths ago and the soft tissue damage is not healing properly because I cannot get horissontal at night and prop up the leg). I have a serious problem with my left breast that I can't get taken care of properly because I do not have a lockable room to be in and sleep/recover, from any necessary surgery. And all the government housing waiting lists are closed! and I can't be around smoke AT ALL so I cant go to any congregate care facility where people smoke/come back in after smoking outside with their clothes and hair full of smoke. Living in this body without a clean air place to llive and sleep and cook nutritious foods is KILLING ME and is TORTURE, literal physical TORTURE