Margaret Ackerman—Where Do the Homeless Go to Die?
There was a time in Boston when police rounded up homeless individuals and brought them to shelters when the temperature dropped below 5 degrees Fahrenheit. Back in the 1970’s, when I was a new nurse at Boston City Hospital, they were admitted to the hospital when the shelters were full. The old city hospital was composed of twenty bed wards, so the men and women were kept separately. I worked on the men’s ward, which was fine by me because the men used urinals and I didn’t have to do “bedpan duty”, taking women on and off the bedpan. One particularly cold, quiet night, I was happy to get a call about such an admission. Mr. Brody arrived via stretcher, yelling and cursing, not happy to be there, even if meant keeping me busy for a couple of hours. Having time on a busy ward was a precious gift and allowed me to deal with his anger in a calm, soothing manner. Trust me, if this had been the day shift, we would have left him in the hall, cursing, and spent our time attending to the busy demands of the ward. But this cold February night, I had all the time in the world, and I really wanted him to stay and keep me awake until the end of my shift.
“Hello, Mr. Brody. What can I get you to help you feel more comfortable?”
“I just want out. You can’t keep me here!”
“Well, it will only be for a few hours; why not just get you out of the cold for a good night’s sleep? How does that sound?”
I encouraged him to take a bath, and drew a warm tub for him. Our homeless patrons often hadn’t bathed in months and were at risk for fleas, scabies or body lice, and the bath was a good way to do a full assessment. Plus, I thought it would warm his bones. Brody calmed down during the bath and became more pleasant. I took him to his bed. The ward was only partially full, so I was able to give him his own quadrant. I got him tucked in and brought him a glass of juice.
“A bath, a warm bed and a glass of juice,” he said, “what more could a man ask for?”
“Not much, but if you think of anything just ring”, I told him, handing him his all light.
“You know, I wasn’t always like this, I used to have a wife and kids, a job and a home. I used to be somebody.”
“Mr. Brody, you are somebody.”
Several years have passed since I had that first lesson in engaging with a homeless person, and yet it continues to be a major social problem in the US. We have more homeless per capita than any other developed nation, with an annual rate of 3.5 million and a nightly number of 842,000.
So, where do the homeless go to die? Often labeled as non- compliant by the health care system, the homeless are left to fend for themselves, and they face multiple challenges for end of life care. Over 70% of the homeless population is mentally ill or has substance use disorders, or, in many cases, both. Homeless people don’t engage in the health care system until disease is well advanced and treatment options are limited, typically seeking care in hospital emergency rooms and often hospitalizations. Many are quickly discharged if unable to follow the treatment plan. A more compassionate approach is to meet the patient on his/her terms, recognizing that the person is a somebody. I was fortunate to connect with two such patients while working as a nurse practitioner at the state hospital. These men coached me on refining my approach to care of the homeless.
One was Kevin, who was admitted from an acute care hospital with end stage liver disease.
His leathery, pocked skin, the color of dark mustard, matched his jaundiced eyes. He looked ready for childbirth, with a fluid-filled abdomen, known as ascites, the fabric of his cheap coat stretched across his belly. His feet were too swollen for shoes; instead he wore flimsy blue Styrofoam slippers hospitals issued to protect patients from germs, and white socks cut down the sides to avoid constricting his already-compromised circulation. A faint, sweet odor permeated the space in which he stood, the scent of accumulated ammonia indicative of the advanced state of his disease
He carried an old, cardboard suitcase adorned with travel stickers of days gone by: Las Vegas, Route 66, and Death Valley…. Places he had never seen.
He had been living in a tent in a childhood friend’s backyard.
At 43, Kevin had been alcoholic for close to 30 years. He’d had stretches of sobriety, long enough to marry and have children, but he had been unable to stay off the bottle. His wife divorced him, took the kids and moved to Florida. Now after years of drinking, he was dying of end stage liver disease, a nasty way to go. The liver is the body’s filter; sorting out and eliminating toxins, and when it fails, the toxins accumulate, rendering the body toxic–a painful manifestation of the alcohol ingested by the body’s owner.
I looked at this man who was the same age as me and wondered how our lives were so different. I felt a surge of compassion as I introduced myself and said:
“Come in, sit down and tell me what brings you here.”
“You fucking bitch, can’t you read?’ He asked loudly, referring to the sheaths of paper given to me by the admitting clerk.
Compassion quickly ignited into a surge of anger–just for a moment.
I hit the reset button and said:
“Once we get to know each other a little better you’ll probably have many reasons to be angry with me, but since we just met I’m assuming you’re not really angry with me. So tell me, Kevin, what is it that has you so pissed off?”
Big sigh, shoulders dropped as Kevin put his head down and slumped into the chair:
“Everyone knows this is the place you come to do die. This is the last stop.”
I had heard this before from people in the community. Indeed the public health hospital was known among the homeless of the city who frequented the health care system, loosely and spontaneously developed around needs, as the last stop.
I looked into his eyes.
“Do you think that’s why you are here, to die?”
I expected more spewing, but instead he began to sob, shoulders heaving under the cheap wool of his coat.
“I know it is.”
“Let me help you,” I replied. “This is the last stop, and we will take very good care of you.”
Later that day, I completed his history. Kevin had been sick for a long time with chronic hepatitis. He was the youngest of six children of alcoholic parents. He had managed to put some clean time together from his mid 20’s to early 30’s and became a carpenter, but work became scarce and when money got tight, he divorced, which gave him a reason to drink. He did odd jobs, lived in single room occupancies (SRO’s), shelters, with friends and families. His isolation increased as his disease progressed and he became homeless, holding a sign for money on street corners.
Telling me his story, he welled up, wiping tears away with his swollen paw. Letting his children down was his biggest regret in life.
“Would you like to speak with them?” I asked.
“They hate me.”
We discussed his advanced directives: he wanted comfort measures only, meaning no resuscitation, intubation or antibiotics.
“Let me die in peace of natural causes.”
As if there was anything natural about his condition.
He met with our social worker and agreed to allow her to contact his family. Yes, they wanted to speak with him. His kids, now adults, flew up to see him. Although the Social worker prepared them for his condition, they must have been shocked to see him after 20 years, fantasies and memories different from reality, now jaundiced and swollen beyond recognition.
The ninth step of Alcoholics Anonymous reads: Made direct amends to such people we had harmed.
They wept at his bedside and said their goodbyes–goodbye to a life they would never know. A peace descended on him: the yellows of his eyes becoming a hazy golden glow, his skin incandescent.
Two days later he died, but not before teaching me the importance of meeting him on his turf.
I learned another lesson from a gentleman named Joe Mulligan.
He was an irascible 58- year old man who, although worn down physically by the drinking life, had retained handsome good looks in a tough-guy sort of way. He was well over 6 feet tall, slim built with thick white hair and bright blue eyes. His presence commanded deference. He was very clear on what he wanted: he was in charge of all things immediate in his environment, and damn you if you didn’t acquiesce. Everything about him boomed.
He had collapsed on the streets and been taken to the city hospital by the police. He was diagnosed with throat cancer, stage IV, and was told there was no hope for recovery. He was sent to the public health hospital because there was nowhere else for him to go.
Mulligan quickly instated himself as “ward boss” of the eighteen-bed unit. The nursing staff was frazzled by his manner, resulting in their being apprehensive to administer his care, much less establish any rules for behavior. Mulligan would pull out his IV and leave the floor with his posse, going outside for hours at a time, holding court and smoking cigarettes. Any other institution might well have discharged him, unable to follow their plan for his care (their plan for his care….hmmm).
The head nurse, Regina, came to me exasperated by Mulligan. Regina was an excellent nurse, compassionate, non-judgmental, and not easily frazzled.
“Peggy, you have got to do something about Mulligan. He’s driving everyone crazy.”
Regina described his behavior. “He’s been disconnecting his intravenous lines (through which he received replacement fluids and medications to manage his symptoms), leaving a trail of blood from his room to the elevator.”
I was having my own struggles with Mulligan, unable to engage him in conversation about his treatment and condition. I wasn’t quite sure what Mulligan knew about his illness, what he expected or what he wanted. He had blown me off when I made my daily rounds, marching by me hurriedly on his way to hold court. I could not think of a way to reach across that barrier and connect with him, until I remembered a song I had learned at the Catholic predominantly Irish grammar school I attended. It was a lively Irish ballad called Mulligan, M-U-double L- I-G-A-N spells Mulligan, Mulligan, Mulligan…proud of all the Irish blood that’s in me, Man. Devil a word a man can say agin me…M-U-double LL-I-G-A-N spells Mulligan, Mulligan, Mulligan”… at least that’s how I remembered the verse. The last line was “that’s me” or “that’s you”…we would sing the song loudly and shout “that’s you”-pointing to our classmate, Leo Mulligan. Mulligan’s parents were from Ireland and he had grown up in the Irish section of Boston, one of ten children. I’d never met an Irishman who wasn’t bursting with pride over being Irish, so I figured I’d give the serenade a try. I went into his room and sang to him. He stayed put, beaming at this recognition and laughed, pointing to himself and rasping, “that’s me” at the last line. Finally a connection!
When my concert was over I put it to him: “Mulligan, what is with you? Why are you driving the nurses and yourself crazy?”
“They can’t tell me what to do!”
“What is it you want to do”?
“I want to go outside and smoke, God damn it!”
He, Regina and I sat together and devised a plan whereby he could go out for scheduled smoke breaks that did not interfere with treatments. Shared decision making is a much-touted approach used in health care, whereby patient and staff engage in mutual decision-making about plans of care. This had been missing from Mulligan’s plan, mostly because he had been unwilling to discuss treatment, possibly frightened over his diagnosis, or of being “cooped up” and losing independence; after all, he had been living on the streets for many years and was fiercely independent, exhibiting all of the characteristics of a true survivor. Because he was surly and not easily engaged, his wishes, wants, desires and most importantly, an understanding of his view on his illness, was overlooked in the planning of his care. He had opened this window of opportunity for me to discuss with him his recent cancer diagnosis, though, and I took it.
“Mulligan, what did those doctors at the hospital tell you about your health.”
“They told me I have cancer in my throat that isn’t curable and they can’t do anything for it. So I guess this is it–I’m going to die.”
He was matter of fact, and spoke in a manner that dared me to challenge him. I sensed he was one of those guys who talked in bullet points, and the interactions couldn’t be longer than five minutes, so I quickly formulated my approach.
“Mulligan, how do you want to die?”
“What about here?” I asked, “would this place be OK”?
He agreed that the public health hospital would be an OK place to die and agreed to a plan whereby he would leave the floor every four hours for thirty minutes off the unit. He went outside to smoke and visit with the other men and women gathered out there. They clustered in groups, smoking and talking, supporting each other. It was important to Mulligan’s overall treatment plan that he met with his group, outside. Meetings with social work or cancer support groups were not going to help him. I don’t know what he talked about down there or if he shared his diagnosis, but he did receive support from his community; sometimes someone would walk him back to the ward, pat him on the back and say “catch you later” or “hang in there”. That small gesture and the somewhat calmed affect of Mulligan reinforced a therapeutic, supportive connection.
He deteriorated quickly, dropping weight and becoming fragile. He still went outside for his breaks, but smoked less and less.
He was accepting of his imminent death, in fact it was as though he had been waiting for death. There wasn’t any emotion, tears, expression of regrets or last wishes for him. No one he wanted to see one last time; he just wanted to go in peace. Mulligan stopped going out and began taking pain medication, and although I know his pain must have been high, he never grimaced or complained. His voice left first, rendering him speechless. He communicated with his eyes, gesturing and using pencil and paper. He was a very intelligent guy, so adaptable and quick. I wondered what else he might have done with his life, but he never wanted to talk about himself and I knew not to push it with him, or I would have pushed myself right out of his care.
Mulligan slipped right past denial, anger and bargaining into the acceptance stage. He died the way he wanted-quietly and peacefully in his bed at the public health hospital.
Developing mobile end-of-life units for the homeless may not be possible, but creating the space for them to receive the care they need to allow them to die on their own terms, is. It requires stepping outside of the box and allowing active participation in care planning. It also requires active listening and true compassion on the part of the caretaker.