Remarks delivered at the April 24, 2013 conference "Finding Humanity in Advanced Dementia," sponsored by the PNP Program at Washington University in St. Louis
This and the other talks from the conference can be listened to on YouTube.
In one of my first substantive memories of a person with advanced dementia, I’m standing at the threshold to the room in the nursing home where my great grandmother lay. I don’t want to say she lived there because in the weeks and months after she fell from the step that led up to the altar at Saint Mary’s Church, they moved her all around, from one to another of all kinds of hospitals and old folks homes and this one, the place I sort of remember as the first nursing home I’d ever been to, it wasn’t the last one she lived in before she died. She had many years to live before she finally died.
It was a Saturday afternoon in Connecticut. I was eight years old. I was standing at the threshold, looking down the hallway. It was long like the hallways at Dater School, my grammar school, but unlike Dater which had wooden floors polished to a rich caramel, this floor was dull gray and white squares of linoleum. It led to another hall and all along these halls were regularly spaced doors that led to old people’s rooms. The ceiling was low.
An old man was moving away from me. He wore a white, collared, short sleeved shirt and dark trousers and these clothes hung from him in the loose and baggy way that the old men who visited my grandparent’s house wore their shirts and pants. He didn’t so much walk as shuffle and the grit beneath his shoes made a sound. I can still feel that sound. Still can. His arms dangled stiffly at his sides.
Something falls out of the leg of his pants where the cuff meets the shoe, and that thing rolls a few inches from his feet. And then again. And yet again. Like when pennies or candy slips from a hole in your pant’s pocket. But these aren’t pennies or candy. And he just keeps walking. He just doesn’t care. He doesn’t stop until a nurse comes out of one of the rooms. She calls his name and makes the sort of noises a mother says to her little kid who’s in distress. She has a towel of some sort and she bends down and uses that to clean up the mess he’s made. He says nothing.
I stepped back into the room. Disgusted.
This April, the New England Journal of Medicine published a research report, “Death with dignity at a Seattle cancer center.” A few weeks ago, I read that report at my office desk at the Alzheimers Disease Center at the University of Pennsylvania and I’ve been turning it over in my head ever since.
It reports the Fred Hutchinson Cancer Center’s three year experience with patients exercising the Washington State death with dignity act. That act allows a terminally ill patient to end his or her life by taking a lethal dose of seconal. Key components of the act include a patient has a terminal disease, the patient is competent to request a lethal prescription and the request is voluntary.
The researchers report on the demographic characteristics of the 36 patients who requested a prescription and they surveyed them to learn the reasons for requesting a prescription. 55% were male, and nearly ¾ white. Most had at least a college education.
The authors report “the most common reasons for participation were loss of autonomy (97%), inability to engage in enjoyable activities (88%) and loss of dignity (75%).” Notably, loss of control over bodily functions was cited by a little more than one-quarter of the participants.
“Loss of dignity.” This phrase makes dignity seem like something we own, a possession, like our keys or wallet or eyeglasses, something we can loose, and if we search hard enough and remember the steps right up until when we last saw it, we might recover it and get on with our dignified lives. And if we can’t find it—and we’re terminally ill and competent—we’ll end our lives.
Or is it something else….
Some 16 or 17 years after that Saturday afternoon in the nursing home in Connecticut, I was a third year medical student at Northwestern University in Chicago doing my internal medicine clerkship. One of our assignments was to present a case. A case meant a patient who had a good story and a good story meant an exciting beginning with a rapidly unfolding plot, leading up to a diagnosis, and perhaps as well with a dénouement of the response to a course of therapy. The best cases started with a “previously healthy” adult. That simple phrase – “previously healthy” – consistently kindles a frisson of foreboding. Something bad, something really bad, is about to happen. And we composed these cases to swiftly stir up the drama. By the close of the first sentence we wanted our audience of fellow students and an attending eager to hear more. And if you were really good you could foreshadow the whole story – the ending in just one sentence right at the very beginning.
“A previously healthy 52 year old woman presents with 7 days of intermittent hematuria, 2 weeks of low back pain and a 10 pound unintentional weight loss.”
We worked hard to tell the story with just the right amount of detail –the pertinent points on history. The hematuria is painless. Denies flank pain. No recent history of dehydration or exercise. We had to present a thorough physical exam, but we knew to highlight essential facts relevant to the drama. No inquinal or supraclavicular adenopathy. We were trained to be skeptical of labs, not to dump the data but instead to compose it like notes of music. Sometimes the attending would even signal us to stop before the labs and ask the assembled listeners to guess the lab results.
Because if we really were good historians, the labs should be evident.
Urinalysis shows no bacteria, many red blood cells, few white blood cells. No crystals. Culture was negative.
“Why,” the attending interrupts, “did you obtain a culture if the urine showed no bacteria?”
He’s right of course. The culture is an unnecessary fact.
I bow my head and evoke the passive actors who govern our lives. “It was ordered.”
By the last chapters of the story, the suspects were lined up in a differentia diagnosis and picked off one by one so that the conclusion was palpable. If this were a book you’d be reading so fast to get to the end that you’d be scanning the paragraphs, flipping ahead to see how many pages remained because that was itself a clue to whether this is in fact the ending, or, seeing that several chapters remained, just another twist in the plot.
To add to the scientific drama of these stories, we would stand around the patient’s bedside as the student read the story, sometimes pausing to examine for ourselves the key findings.
We hunted for good cases. To find these crystals, we had to sort through a census of ordinary rocks. A straight forward pneumonia, yet another chest pain rule out MI, a lunger with a cough and shortness of breath.
You knew you’d told a best seller when, at the end, a colleague remarked “great case.”
There came a week when one medical student, I’ll call her Sarah, but I don’t remember her name, was to present her case to the attending. She was a bright young women from a prestigious college in Boston. She worked hard on her assignments. But it was known that she wanted to go into ophthalmology. This meant of course, that she needed the best of grades and an honors in the internal medicine clerkship would be essential.
Her case, she explained, was up on the hospital’s top floor, in the remodeled ward that featured not semi-private rooms, but truly private rooms, large rooms, with teevees, dark wooden furniture and cabinets, beds with rose colored quilts, and art work that evoked European estates and country scenes. They served the food on china plates with metal utensils, not real silver, but good enough to call silverware. The views from this tower were citywide and, in some premium rooms, captured the vast waters of Lake Michigan.
We entered the room. An elderly white woman lay awake in the bed. The quilt was smoothed out and tucked up to just below her chin so that her head was almost disembodied. Her hair was as white and stiff as marble. Her lips were painted red. If she smiled, it was hardly noticeable. She did not speak. She never spoke.
I do not recall how Sarah opened the case. I do not recall what exactly the story was about. She told us the old woman lived in a nearby apartment and for the last few years had needed help to live there. Someone had to dress her. In the past few days she had been more and more confused and disruptive. She had hit at people. Sarah said the patient her self had no complaints. Sarah then recited the litany of pertinent negatives on a review of symptoms. Her physical was also unremarkable. So too her labs.
And so today, the old woman who could not remain calm in her lakeshore apartment now lay calm in her bed high in the hospital tower. It was like we’d walked into her bedroom at home.
Beside her bed, a black woman sat in a chair. She was dressed in a kind of nursing costume. Sarah gestured to her and explained how she lived with the old woman. The woman smiled as Sarah explained how the woman helped the old woman get dressed and made her meals.
Once, the old woman spoke words that made no sense and Sarah paused her story to ask her what she wanted but the old woman could not tell us what she wanted and Sarah tilted her head and smiled and patted the woman’s hand beneath the rose colored quilt and called her sweetie or something like that and said to her that everything was ok. She sounded like she was talking to a child.
Honestly, the case sucked. There was no drama, no mystery, no physical exam findings. There was no diagnosis. We didn’t touch her. We didn’t talk to her. We just looked at each other and at an ancient old woman whose idle gaze looked to no one and nothing in particular as well.
We couldn’t wait to leave. The attending made a few remarks about how we see this kind of patient and the problems she had were difficult to manage and a few other things that filled the time long enough that leaving was not rude
Why did Sarah do this? What was to be gained from this?
We were bored, uninterested. We were disgusted.
The incontinent man shuffling down the hallway of his nursing home, the mute woman who struck out at the hired woman who bathed and dressed and fed her…
If someone is disgusting, we will not grant them dignity.
If we’re going to find humanity in advanced dementia, I believe we’re going to have to confront our feelings of disgust and our failure to bestow dignity to our patients.
I picked the word “bestow” because it evokes the idea of presenting a gift, of providing safe quarters.
Those men in Seattle dying of cancer who checked the survey question that among their reasons for taking a lethal dose of seconal was a loss of dignity, were in a sense, telling us about feeling a loss of humanity.
Fifteen years ago, when I was a fellow in geriatric medicine, I read the philosopher George Agich’s book Autonomy in Long Term Care. It’s a well written and thoughtful effort to make sense of autonomy among people who by definition are dependent on others for their day to day life. The book includes careful philosophic work that clarifies the meanings of terms and distinguishes among kinds and concepts.
He also gathered data using interviews with and observations of nursing home residents and staff.
And there is a line in that book that has never left me. It is a piece of data he reports, a quote from a nurse’s aid, which is an hourly paid worker who has the hourly charge of the physical care of a resident.
“Not all poop smells the same,” she said.
I think anyone who has been a parent to an infant or been with a parent as he or she does the work of parenting knows what I am saying.
I’m always struck at how a parent will hoist their infant aloft by the shoulders and swing the child’s diapered bottom close to their nose to determine whether a change is needed. They do this deliberately, casually and without shame. Without disgust.
When the nurse stooped to help the old man in the hallway in the nursing home, I wonder if she felt disgust.
The bond between a parent and their child, the bond between some nurses and some nurse’s aids and some of their – patients, clients, charges – I’m not sure of the word but whatever the word, it matters a lot – this is the kind of bond that makes not all poop smell the same.
When I was a fellow in geriatric medicine, I had charge of the care of a group of nursing home residents. The nursing home was part of a continuing care high rise building. Above the lobby level, were two floors, one a nursing unit for patients on either “short stay” or long term residence. The other was the Special Care Unit – a locked ward – for residents with advanced dementia.
One day I was seeing patients in the Special Care Unit. There was one patient, a Mr. Edwards. I asked my self, why does Mr. Edwards have a beard? He is one of the residents of the special care unit, and one of the more active residents there too. He passes his days shuffling from one end to the other of the long hallway, stands at the nurse’s station and stares at the front page of the newspaper or a flower or a clipboard. He is tall, so thin that his belted pants gather about his waist like a curtain along a rod. His chin and cheeks are covered by a well groomed, snow white beard. Of all the men on that floor, he is the only one with a beard. Why, I wonder, does he wear one?
The beard is not a sign of neglect. It’s thick and full, not tangled or dirty. I wonder, did he grow it after he arrived at the special care unit? Or before? Whether before or after, someone, not he, has chosen to maintain it. His dementia has advanced to stage that he is dependent or need “maximal assistance” in all basic activities of daily living, save for transferring. Someone must dress, bathe and cloth him. When he needs to toilet, he often chooses a spot on the floor proximate to where, at that moment, he stands. Although once upon a time he may have gown that beard by his own agency, now someone else has charge of it.
Who and why?
Dr. C. cares for him, but she is on maternity leave. In her absence, I’m his physician. Several days ago, another resident pushed him to the ground. He hit the floor and yelled and for several minutes he appeared to be in great pain at his right hip. Then he started walking again. The same slow shuffle as before the fall. I ordered x-rays and they demonstrated no fracture.
I telephone Mr. Edward’s wife on the pretext of reporting the results of the x-rays. The news is old. She visits every day. She already knows about the fall and the x-ray results.
I talk a bit about his health until I feel the courage to ask her question I really want to ask. “I was wondering why he has the beard. There’s no problem with it. It’s just that he’s the only resident with one.”
She repeats the question. “‘Why does he have a beard?’ I guess because he does. Because I take care of it. He’s had a beard since about, well let’s see, we married in 1973 and so I’d say he grew the beard in 1975 or so. He’s had it since then.”
“So since before he came to Montgomery Place.”
“Right. He’s been there for about two years now. I cared for him at home for about five, and then well, it got to be too much.” She laughs. “You can imagine. So I moved him there.”
“But I take care of the beard. You know, I’ll tell you a story. When he first got to there, they sent him down to the barber for a haircut and to groom his beard and I got a call from the barber saying that the next time he came I would absolutely have to accompany him, and do you know why?”
“Because he started to take his clothes off.” She laughs. “Right there in the chair, he started undressing. Well, I said none of that, so I went out and brought a set of proper shears and scissors and such and started taking care of it my self. Every few days, I tend to it. He rather likes it when I do. He lets me do it and seems to enjoy it.
“You know, he doesn’t know my name but he does recognize me as some one who is good. When I show up he smiles and we sit in his room. I take care of his beard there. I think he looks rather handsome with it. He always did. Besides, he’s gotten so thin, even though he eats, he’s gotten so very thin and I think the beard helps to cover how thin his cheeks are.”
“I agree. He does look handsome with it. Distinguished.”
“Well you know why he grew it? He used to do real estate in Hyde Park there and a lot of his clients were professors at the university and back in the seventies beards were quite popular, so he grew one. Sometimes, he wears a tweed coat with patches at the elbows and I’ll tease him ‘oh you’re dressed up like a professor today.’”
I laugh. “It’s the look.”
“It is.” She agrees.
I thank her for telling me this story. Since I met him, I explain, I’ve been wondering where the beard came from. “I knew someone was behind it, so to speak, and it’s you and what a marvelous story. You’re taking such good care of him and his beard.”
She thanks me.
And then we hang up.
This past Wednesday, while seeing patients at the Penn Memory Center, I told the wife of one patient about this weekend’s conference, Finding Humanity in Advanced Dementia. Her husband has had Alzheimers disease dementia for about 8 years. He lives at home with her. Every morning, someone comes to bathe and dress him and help him to the toilet. He needs a diaper but wont wear it. If he’s outdoors, he’ll relieve himself there. She has to cut his food. He can speak a sentence or two, but he can’t converse. At night, they watch Gunsmoke on teevee.
This summer, she will sell the house they’ve lived in for decades, move by her self to a smaller one and he will move to a special care unit.
I told her about my talk, about how I was going to talk about disgust and dignity and how they might be the ways we negotiate our way to finding humanity in advanced dementia.
She disagreed with me. She doesn’t feel disgust for her husband. She told me how she feels a sadness and mourns his loss, their loss, the loss of this part of her.
Of course she doesn’t feel disgust for him. That’s why she bestows him dignity, and that I think is why she is open to feeling sadness for him and to mourn him and to care for him, even after he does not live with her, like the wife who groomed her husband’s beard.
I am not a religious man. It has been years since I attended a church service so I hope you appreciate the conviction I have when I tell you that I think it is out of our suffering that we find humanity in advanced dementia.
Finding Humanity in Advanced Dementia was sponsored by the PNP Program at Washington University in St. Louis. Many thanks to Jeff Dauer, Richard Rubin and Carl Craver.