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In the Hospital, a Degrading Shift From Person to Patient
10 years ago
| Blue Label

Correction Appended

Mary Duffy was lying in bed half-asleep on the morning after her breast cancer surgery in February when a group of white-coated strangers filed into her hospital room.

Without a word, one of them - a man - leaned over Ms. Duffy, pulled back her blanket, and stripped her nightgown from her shoulders.

Weak from the surgery, Ms. Duffy, 55, still managed to exclaim, "Well, good morning," a quiver of sarcasm in her voice.

But the doctor ignored her. He talked about carcinomas and circled her bed like a presenter at a lawnmower trade show, while his audience, a half-dozen medical students in their 20's, stared at Ms. Duffy's naked body with detached curiosity, she said.

After what seemed an eternity, the doctor abruptly turned to face her.

"Have you passed gas yet?" he asked.

"Those are his first words to me, in front of everyone," said Ms. Duffy, who runs a food service business near San Jose, Calif.

"I tell him, 'No, I don't do that until the third date,' " she said. "And he looks at me like he's offended, like I'm not holding up my end of the bargain."

Entering the medical system, whether a hospital, a nursing home or a clinic, is often degrading. At the hospital where Ms. Duffy was a patient and at many others the small courtesies that help lubricate and dignify civil society are neglected precisely when they are needed most, when people are feeling acutely cut off from others and betrayed by their own bodies.

Larger trends in medicine have made it increasingly difficult to deliver such social niceties, experts say. Many hospital budgets are tight, and nurses are spread thin: shortages are running at 15 percent to 20 percent in some areas of the country. Average hospital stays have also shortened in recent years, making it harder for patients to build any rapport with staff, or vice versa.

Some hospitals have worked to address patients' most serious grievances. But in interviews and surveys, people who have recently received medical care say that even when they benefit from the expertise of first-rate doctors, they often feel resentful, helpless and dehumanized in the process.

In a nationwide survey of more than 2,000 adults published last fall, 55 percent of those surveyed said they were dissatisfied with the quality of health care, up from 44 percent in 2000; and 40 percent said the quality of care had gotten worse in the last five years. The survey was conducted by Harvard University, the federal Agency for Healthcare Research and Quality and the Kaiser Family Foundation, an independent nonprofit health care research group.

"The point is that when they talk about quality of health care, patients mean something entirely different than experts do," said Dr. Drew Altman, president of the Kaiser Foundation. "They're not talking about numbers or outcomes but about their own human experience, which is a combination of cost, paperwork and what I'll call the hassle factor, the impersonal nature of the care."

Loss of Identity

It is practically a patient's birthright to complain about arrogant doctors, foul hospital food and the sadistic night nurse. These are real problems at some places, and since at least the early 1980's, medical schools and hospitals have worked to solve them, giving doctors classes in bedside manner and including patient representatives on staff, among other things.

Yet the deeper psychological transformation from citizen to patient that occurs in almost any medical setting can be more jarring, and anthropologists say it begins immediately at admission.

A clerk, often distracted, often sitting behind glass, hands out confusing forms that demand detailed personal information. The newly designated "patient" then strips to underwear and puts on a flimsy hospital gown, open at the back, a humiliating uniform that often bears the name of the institution.

The psychological dynamics of this identity change have evolved little since the 1950's, when the sociologist Erving Goffman detailed the depredations of life inside a mental institution in his classic book, "Asylums."

After a patient's admission, Dr. Goffman observed, a kind of psychological contamination occurs. In normal life, people can keep intimate things like ailments, thoughts and their bodies to themselves. In an institution like a hospital, "these territories of the self are violated," he wrote. "The boundary that the individual places between his being and the environment is invaded and the embodiments of the self profaned."

Sandra Ramundt, 52, felt this so deeply that she decided to break out of the hospital while recovering from brain surgery last year.

10 years ago

Ms. Ramundt's room was private - she paid extra for that, she said - but despite her expectations, staff members came and went without knocking and rarely closed the door, and the hallway noise was relentless.

Despite repeated requests, no one cleared away the scattering of French fries left by the previous occupant, she said, and sometimes, unwitting attendants would leave her bedside phone just out of reach.

On the night after surgery to remove a tumor, Ms. Ramundt said she lay in mute agony. The emergency call-button was attached to a retractable railing on her bed, which was in the down position, also out of reach. She fell to the floor reaching for the button and lay there for a long time, she said; a friend found her and helped her back into bed.

When, weeks later, Ms. Ramundt had the strength to move, she disconnected her I.V., dressed, stole off the hospital premises and bought herself lunch. She ate it at a neighboring park, before returning to the hospital.

The outside lunches became a routine.

"I did it because I could, and because, to be honest, I was concerned about losing my mind," said Ms. Ramundt, who lives in Los Angeles and is a nurse. "There's this overwhelming sense being a patient of having no boundaries, no privacy, no control over anything, and you feel so awful you can't do anything about it."

At least Ms. Ramundt had some idea how hospitals work, and she could eventually advocate for herself without feeling that she was being unreasonable. Others have found that even minimal objections win them a reputation for being difficult.

Michael Sieverts, a cooking instructor in Santa Monica, Calif., who had brain surgery in 2001, said that one of the most awkward moments during his care was when a nurse tried to insert an intravenous line in preparation for radiation treatment.

At the time, Mr. Sieverts had not yet decided he wanted radiation, he said, and he needed time to research the treatment. Yet in refusing to allow the insertion of the intravenous line, "it was clear that I was putting the nurse into a terrible predicament," he said in an e-mail message.

"She had been sent in to do a job, and she was going to come out of the room having failed," he added. "At that moment, I became a 'bad patient.' "

The Psychology of Illness

Even when doctors, nurses and nurses' aides take care to treat people more graciously, as they often do, the patient may have a vastly different perception of the service.

In the winter of 1998, Jeanne Kennedy, then the chief patient representative at the Stanford Hospital and Clinics, in Palo Alto, Calif., broke her knee cap rushing to a meeting. A member of her staff wheeled her to the employee health department, where a nurse practitioner she had worked with for years began arranging for her care. But the nurse spoke to the woman pushing the wheelchair and ignored Ms. Kennedy.

"It was crazy," she said. "Here I was in my own hospital, hurt but perfectly capable, and she's being very professional but she's talking over my head as if I were a child. And we worked together. She knew me!"

Ms. Kennedy, who retired from Stanford University hospitals in December after more than 25 years and now speaks to health care groups, said injury and illness make people more likely to perceive slights than when they are healthy. "Even if the nurse says, 'Sure, I'll go get that,' and does so promptly, it can sound rude to the patient in this vulnerable condition," she said.

This vulnerability, many patients say, makes noises seem louder, time seem to slow down and anything that is less than indulgent compassion feel like coldness.

People who have had chronic pain know this dynamic intimately. For a nurse responding to a request for pain medication, appearing five minutes later may seem a prompt response. For the patient, the same minutes may seem a purgatory, or even a kind of punishment, into which a desperate mind can project its worst fears.

"When you are in rip-roaring pain," Ms. Duffy said, "you're asking for drugs all the time, and you're thinking: O.K., am I an addict? Am I asking too much? Am I offending the nurses? Are they taking so long on purpose to get back at me?"

So it is that hostility grows between conscientious, reasonable nurses or doctors and conscientious, reasonable patients. And once the feeling is there, some patients begin to fear the very people who are caring for them, they say, and are very reluctant to call a patient representative or file a formal complaint.

10 years ago

The Importance of Names

After spending almost a year in an oncology ward being treated for leukemia, where she said she was spoiled by the nurses, Shawna Needham, 31, of Thomasville, N.C., had what she called a nightmare experience in a rehab unit.

"The nursing staff was inconsiderate and lazy; it would take them 15 to 30 minutes to answer, just to get help going to the bathroom," Ms. Needham said in an interview.

But she was afraid to complain to the hospital. "If I did that, that's the big time," she said, "and if they got into trouble and found out I complained, well, I didn't want anyone coming at night to slit my throat, put it that way."

Besides, she said, "I really had no idea who my nurses were; I knew none of their names."

Names matter enormously, patients say.

In Dr. Goffman's account of life in a mental institution in the 1950's, he describes the admission process as a stripping away of possessions, "perhaps the most significant of which is not physical at all, one's full name."

In modern medicine, patients more commonly become exasperated because they do not know the names of the doctors or other medical staff. At many clinics and hospitals, staff members come and go without introductions, patients say. Name tags are in lettering too small to read easily; the names embroidered in script on doctors' coats can get lost in folds.

In hundreds of focus groups conducted by Planetree, a nonprofit group based in Connecticut that helps hospitals become more responsive to patients needs, one of the most common complaints that patients had was that they could not tell who was on the care team or who was doing what, said Susan Frampton, president of Planetree.

"What we encourage hospital staff to do is introduce themselves, always, and patients should demand it," Dr. Frampton said.

James Edwards of Kinston, N.C., devised an especially effective technique. After being blinded and suffering severe injuries in a chemical plant explosion, Mr. Edwards spent about six months in a burn unit, where he got to know the medical staff by the sound of their voices.

Mr. Edwards was pleased with his care over all, but he became upset when hospital staff members entered his room without speaking to him.

After one doctor slipped into the room unannounced and tried to give him an injection, Mr. Edwards decided that he had had enough, said his father, James (Red) Edwards Sr., in an interview. His son posted a sign on the outside of his door. It read:

"ATTENTION:

1) Please announce yourself when you come into my room (let me know your name and why you are here).

2) Please let me know what you're going to do and how it will feel before you touch me for any reason.

Thanks - Jim and Red"

The hospital where he was treated, at the University of North Carolina in Chapel Hill, has included Mr. Edwards's sign in a training video for its staff.

Grim, drab, soulless, disorienting - these are the kinds of words patients often use to describe medical buildings, and the words evoke both the buildings' designs and their effect on guests, experts say.

Even the humble doctor's office, if laden with medical tomes and framed medical degrees, can make a patient feel like an intruder in an exclusive space; unwelcome or even unworthy, say environmental psychologists.

Larger facilities can pose more practical, mundane complications: many people have trouble navigating the parking garage, much less finding the front door or the admissions office. And once patients check in, they may get nothing more than a wave of a hand pointing them to an assigned room.

"And then off you go, into this dreary, unattractive maze" that is often entirely cut off from the natural comforts of the outside world, said Dr. Roger Ulrich, director of the Center for Health Systems and Design at Texas A&M University.

The Discomfort of Noise

Noise levels may be more integral to effective care than hospitals realize. Television sets blare, moans issue from the room next door, nurses gossip in the corridor.

In a recent study, Dr. Ulrich and researchers at the Karolinska Institute in Sweden monitored the health of 94 heart disease patients. About a third of the patients received care in a unit with commonly used plaster ceiling tiles, which bounced sound waves back into the room. The other two-thirds were treated in rooms with sound-absorbing ceiling tiles, which muted echoes and reduced overall noise noticeably.

After three months, the study found, the patients in the quieter rooms were less likely to be readmitted for further health problems than the others, and on questionnaires they rated the staff higher. They also had significantly lower pulse amplitude at night, a marker of better circulatory health.

10 years ago

"Not to mention that when it's quieter, you can actually hear and understand what staff members are saying to you," Dr. Ulrich said. "These are the kinds of environmental factors that do not show up in a hospital's brochure but we're finding are very important not only to outcomes - how fast people get better - but to their overall experience as patients."

Experts say that many hospitals have already incorporated design improvements, including clearer hallway signs, courtyards, fountains, even flat-screen television sets in some rooms. In May, Dr. Ulrich was in England to advise the government on patient-friendly design for some $40 billion in new hospital projects, he said.

But if the social and psychological culture of patient care is to improve, experts say, it is likely to depend on patients and families knowing their rights and acting on them.

Ms. Duffy now works as a hospital volunteer, giving other breast cancer patients advice on how to avoid situations like her post-operative humiliation: Stop being a good girl, she says; you've got a mouth; you should use it. Have someone with you at all meetings with doctors, if possible. And take notes.

"Otherwise," she said, "you cease being a person and become 'the carcinoma in Room B-2,' like I was."

Correction:

Picture captions on Tuesday with a front-page article about patients' loss of dignity misstated the name of an institution that is taking steps to make them feel less dehumanized. It is the University of North Carolina Hospitals, not the University of North Carolina Medical Center.
Cancer care in Palm Springs
5 years ago

My cancer appeared overnight. I was extremely ill from 30 years of undiagnosed Lyme disease. My mobile home was surrounded with sewage for a yr. I got sewer gas poisoning, then breast cancer. Instead of making repairs, evil rumors went around town ensuring no help or friends. I couldn't get food. The only meal program here refused me meals because I called the health dept. (who waited a yr). I was in the wood shed so the health dept. took sides based on the rumors! 4 others were made sick here. They worked 2 hours a day for 2 years. I dropped from 116 to 82 pounds.
I had 4 months to live if I didn't get food. I found the strength to run. In Palm Springs, my engine blew and I discovered a large "bullet" sticking out of my breast. It had grown overnight and was full of what felt like green peas.
My van was towed to a mechanic who stole it. Despite how aggressive my cancer was, I had to wait 2 months to see the surgeon. I had to walk to all appts including 6 weeks of radiation treatments in 120 degree heat.
When the anesthesiologist told me there were steroids in my shot, I said I could not have it. It is the worst thing you can do to a Lyme patient or anyone with infection, and I had many. Steroids suppress the immune system. Even without Lyme disease, is it wise to give to a cancer patient who NEEDS immune support? Both my primary care doctor and my oncologist would have backed me up (we skipped chemo because it contains steroids). When I later complained to the hospital, they told me I only thought I had received steroids. The anesthesiologist said they were new & safe.His look said "you foolish child, I know better."
With no van, I had a backpack. Clearly, this meant that I was homeless, not human. (That is not my opinion of the homeless). A nurse promised to watch my pack. It contained $200.00 (my secret). After surgery, the pack was gone. A woman was screaming at me, hysterically enough to be incoherent. I heard one word: clothes. (?) I then saw my bloody exposed breast, & covered up. I was freezing. I hadn't spoken. I was safely between the bars in fetal position trying to get warm with one flannel sheet. No blanket was offered. Instead, she ordered me tied to the bed. It was done.
At some point, my backpack reappeared minus my medicines and supplements for the Lyme disease.
When I was taken to my room, 2 nurses showed me the bathroom and with great anger warned me not to use it without calling them. I did so twice, but was ignored. Since the hospital was completely quiet, I knew they weren't busy. I went. I wasn't given my sleep medicine. I finally fell asleep at 1 am. At 2, the nurses woke me, made me sit up & empty my backpack twice to inventory the contents. They took my money while I slept. The inventory was a coverup. I was suffering too much to notice.
I was given only 20 mild pain pills. This caused a 10-day blackout. I remember only the fish hooks. The surgeon had inserted them under my skin for fluids to drain, but he had a vacation to get to, so did not have time to secure them. When I rolled over in bed, they tried to pull out. OW!
My support system: my mother & son first planned a vacation to celebrate. My mother told me I deserved the cancer.She came when she thought I could take her sightseeing & help her find a home. She told my assigned social worker that I had no other medical problems:after 30 years of Lyme disease, I had a full page of diagnoses. My social worker, with no access to my medical records told me I didn't have sinusitis.I stopped her. She was awful. I was promised, then denied another. My only "friend" sent a long letter saying she had no time for me. A get well card would have taken much less time.
Thanks to the steroids, the Lyme disease is worse than ever.I had to return to the same sewage-soaked home that caused the cancer.Here I lay for 2 years, and counting.I couldn't sit up long enough to drive had I had transportation.I got one meal a week. During cancer treatment, I gained 20 pounds.I was now back to 82. I was refused homebound meals by the only resource in town, because after a year, the health department finally came out. The meal center was friends with mgmnt. & wouldn't betray them by feeding me. 3 others were sickened from just a few minutes here: one didn't even enter the house. Social Services & the AMA refused help so I couldn't get followup care. Doctors said that if I did not get out of this house within a year, I would die. I don't know how I've lasted this long, but I know I only have a couple of years left (details too lengthy to discuss here).
I had a small trust fund which I hoped would get me to civilization so I could get cancer and other specialty care, organic food, and so much more that's not here. It was a chance to save my life. But my trustee and "friend" of 30 years freely spent my money without my knowledge.The fund was not about competency. It was to protect my disability pittance. I was to decide how to spend it. I knew I would be living my last days in a van.I can't afford rent, food, and gas here, and am still suffering sewer gas symptoms and hunger. I am back in the situation that caused the cancer, unable to get out.
I've been told that I will live forever because everyone who says that they will die after cancer lives forever. These crazy comments and rumors assure that I get no help.They are also an invitation to rob me. I called a cancer nonprofit in Indio who did offer to help me pack. I was so weak that I shook all day trying to do my part. Sitting up was agony.They brought a crew of 5. When they were gone, so were most of my keepsakes, gardening tools, computer, and much more.It amounted to $1,000.00.The police said it was my fault because I didn't keep an eye on 5 people who were in 5 different places while using all my strength to sit up.
My sutures haven't healed.
When the cancer ret

correction to above post
5 years ago

I referred to a woodshed. That is where I lived during repairs. The 2 years, 2 hours refers to the contractors who did the work. Shortly after my sewer was repaired, another one sprung a leak, and ran for another year, like a small river, down 2 blocks.

The sewage-soaked sand from my lot was piled high in the back of the park. Every day, at least 10 children jumped and played in it. Later, they rode their bikes through the sewage river. I fear for their health as they grow up. They will never know what hit them.


The cancer center's social worker's comment about sinusitis was the beginning of negating all of my diagnoses. She also told me that my van had not been stolen. She took her information from my mother who knew nothing. I thought my medical information was confidential. Since I was conscious, I believed I had to authorize any discussion about my case. My mother is not fully sane. She had been so consistently cruel that I had limited contact to once a year. So part of my cancer treatment was based on information from my mother, without my knowledge, and without a chance to redeem myself. I didn't know until the sinusitis remark that they had been discussing me freely.

At the hospital, my medicines and supplements were taken with no questions as to how important they were.

The nurses refusal to let me use the toilet was to ensure that I would be so distracted by my full bladder, that I would not notice what they had done while I slept. The 2 incisions and the fish hooks in my back were apparently not enough. But in reality they were, because I did not realize they had stolen my $200.00. (I was also feeling horribly demoralized from the experience in the OR, especially being tied to the bed). I had had to put something else in the safe, and was not allowed to use another for the money.

Regarding the nonprofit who robbed me, I tried to find an agency that oversaw nonprofits. I was told repeatedly that there was no such agency, and I had no recourse. Beware.

I am so grateful for your post, Dirty F. I truly thought that it was just me. Everything I've read by cancer patients expresses gratitude for the wonderful support they got from family, friends, and their medical team. Thank you so much for doing the research. It matters.

The AMA promises transportation to patients. They don't mention that you must live near a cancer center, and that followup care is not included.

To be fair, I must say that there were a few kind people at the cancer center. Most of them did not hold positions of authority so they were limited to comforting words, and offering food when they could. They kept me sane. I had begun to feel like trash.

I wonder how many others undergo the kinds of treatment described here.

Why is it assumed that after surgery, all is well, you don't need help, and despite that people still die of cancer, everyone is sure I won't (except 3 doctors and me--I know my health history). I know cancer patients who do nothing based on these misconceptions. Some get lucky, some die. Some who do everything right die.

Being unable to get followup care, organic food, support, exercise, or help, I realized that all I could do was try to remain calm, meditate, visualize my goals, maintain my self-respect, rest, laugh, and do what I can to get back to civilization. I also had to eliminate from my life all negative nonsupportive people. I told my brother that my life depended on staying calm and feeling good about myself, so please stop the character assassination. I got email after email with large bolded statements like YOU NEED SERIOUS PSYCHIATRIC CARE!!!! I had told him I needed positive support so that all my fight could be used inward against my health problems, especially the cancer. He called this an accusation that he was killing me and said goodbye forever.


My last sentence was cut off (I ran out of space). It said that if/when the cancer returns, I will let it run it's course. Some things are more important than life. I won't be abused like that again. If I could get away from here in time, I would seriously research alternatives.

I spoke up at the cancer center when I repeatedly told the anesthesiologist not to give me steroids. He knocked me out while I was still protesting. I requested a social worker with whom I felt safe. I was assured I would get one. The next day, I was told that it was not possible. I kept trying, to no avail.

Apparently I do not need help. No one asks what I do for myself: my illness is proof that I do nothing, and as long as I am alive, that is proof that the cancer isn't a serious concern. I have no problems like most people do. I never even had permission to cry. Positive people die too. If that were the solution to all medical problems, there would be no disability. I knew one man who was paralyzed from the neck down. His millionaire father refuses to help him because if he would just think positively, he could get up and walk.

As much as we need a cure, we need public education to stop these kinds of nightmares no matter what the illness. That alone, I am sure, would save many lives. Low self-esteem and the constant need to defend yourself take away from the healing work.



This post was modified from its original form on 30 Nov, 14:28