“I get no respect.”
Rodney Dangerfield wasn't talking about being an inpatient, but he might as well have been. From gaping gowns to endless personal questions, hospitalization poses numerous threats to a patient's respect and dignity. In a 2005 Commonwealth Fund survey, 43% of patients reported a loss of dignity and respect from interactions with the health care system.
Such effects may be so common that they pass below the notice of many hospital clinicians. But a few experts are working to preserve dignity and respect for hospitalized patients.
Protecting the dignity of older patients was a top priority of 2012 for the United Kingdom's National Health Service. And here in the U.S., the Gordon and Betty Moore Foundation's new Patient Care Program, launched in August, specifically lists ensuring dignity and respect for patients and families as one of its goals.
It's a challenging task, experts said, since there's little firm agreement on what a dignified, respectful patient experience would entail. “Sometimes people aren't very precise about what it means,” said Rebecca Dresser, JD, a professor of law and ethics in medicine at Washington University in St. Louis. “Individual patients probably have different senses of what's dignified treatment.”
How not to do it
There is some agreement around what constitutes undignified treatment, however. “Dismissive treatment of patients—ignoring their requests, or not being willing to answer their questions or call them back,” described Lucian Leape, MD, adjunct professor of health policy at Harvard University.
In interviews with elderly patients, Cynthia S. Jacelon, PhD, RN, has found similar issues. “One person told me about being in the hospital, ‘They treat you like nothing. They just throw your stuff around. They treat you like what you have to say doesn't matter,’” said Dr. Jacelon, who is an associate professor at the University of Massachusetts Amherst School of Nursing.
Both experts noted that most clinicians don't treat their patients with such blatant disregard. “A small fraction behaves this way. They have a disproportionate influence,” said Dr. Leape.
But even well-meaning hospitalists can inadvertently harm a patient's dignity in the face of competing concerns. “The patient's priority and the caregiver's priority are not necessarily the same,” said Dr. Jacelon.
For most physicians, the top priority is, of course, treating illness. If they accomplish that, they view the case as a success. But patients may not see the situation the same way, according to George Bo-Linn, MD, FACP, chief program officer of the Gordon and Betty Moore Foundation's Patient Care Program.
Dr. Bo-Linn has talked to patients about their negative experiences of hospitalization. “They healed from the medical experience but they carried with them the memory of how unpleasant it was, how disrespected they felt and how they felt their dignity had been removed during the time they were receiving extraordinarily good medical care,” he said.
Loss of dignity can result from something as simple as the way a patient is addressed. “When you have a small older woman who's in the hospital because of a drug interaction, and you call her ‘dear,’ you might not recognize she's a Supreme Court justice who does not expect to be called that,” said Dr. Jacelon.
Whether patients are national leaders or not, their dignity can be impacted by what they are called both in and out of their presence, others agreed. Some patients, especially younger ones, may not mind use of their first names, but regardless, using a name rather than a condition is definitely in order. “A patient should be called ‘Mrs. Jones' rather than ‘the patient in room 14 with an infected gallbladder,’” said Dr. Bo-Linn.
“Just like when parents are talking about children and children overhear, sometimes patients overhear,” noted Ms. Dresser.
However, in general, that comparison to children can be problematic, said Dr. Leape. “We treat an awful lot of patients like little children and that's pretty disrespectful and totally unnecessary,” he said. “When you say lack of respect or dignity, most people think insults…but a much broader and more serious type of disrespectful behavior is lack of [opportunity for] informed decision making.”
Patients who aren't given full explanations of all the medications they're taking, of adverse events that have occurred, or of alternative treatment choices are losing dignity, the experts said. “A surgeon may believe the best way to proceed would be immediately to surgery,” said Dr. Bo-Linn. “The patient, if not given respect and dignity, may be presumed to be in agreement and hurriedly asked to give consent without being fully informed, when the patient may say, ‘If I knew more about my options, I would have chosen not to have surgery.’”
Surgeries entail a number of other risks to dignity. “The gowns you have to wear, your ordinary sense of modesty is out the window,” said Ms. Dresser. “When I was hospitalized, I was taken to a room on a gurney. Going through the halls, people visiting their relatives—or anyway non-clinicians—stared at me and I found that very undignified. You're at a lower level and you feel not a full person.”
Add to that the repeated prodding and questioning intrinsic to hospitalization and the result is a likely loss of dignity. “Your ordinary status as a person, when you become ill and especially in the hospital environment, is just gone,” said Ms. Dresser.
It may never be possible to make inpatients feel as comfortable as they do outside the hospital, but hospitalists can help cushion the blow, the experts said.
Combating those rare, egregious incidents—when another clinician mocks or ignores a patient, for example—just takes the courage to speak up. “Instead of being silent and [thinking], ‘Oh, isn't that a shame,’ they have to say to the [perpetrator], ‘That's not appropriate conduct,’” said Dr. Leape. (This is also true when the victim of disrespect is hospital staff rather than a patient, he noted, because any mistreatment contributes to a negative hospital culture.)
“Sometimes just making a person aware of the fact that what they're doing is disrespectful is all it takes for them to change,” he said. “Other times they need counseling or help. If they are totally recalcitrant, they need to be shown the door.”
The many dignity violations that are unintentional can be resolved without such drastic measures. Ms. Dresser recommends “jacking up ordinary etiquette” during any awkward encounters. “Be especially polite and deferential: ‘Do you mind if I lift up your gown?’ ‘I'm sorry to come in just as you've gotten out of the shower.’”
Also, when you have a number of trainees in tow, ask the patient if it's OK to bring the whole crowd into the room for the exam. “Ask permission for crossing the ordinary boundaries that we have in terms of our physical modesty as well as our personal space,” said Ms. Dresser.
Questioning patients about preferences is a big part of maintaining their dignity and respect. The queries should start at admission, according to Dr. Bo-Linn. “‘Shall we call you Mrs. Jones?’ ‘How would you like us to communicate with you and your family?’ ‘What do you want us to be sure that we remember about you as we take care of you?’” he said. “Simple things like that would go a long way to ensuring not only respect, but also having the patient and families feel comfortable speaking and noting when they feel that dignity and respect has not been maintained.”
Speaking up about dignity violations can be difficult for patients. “Most patients are not going to say anything because they are intimidated. This is a person who is supposed to be taking care of them, so they don't want them to be irritated,” said Ms. Dresser.
To get a better idea of patients' views on the subject, Dr. Jacelon has developed a tool to measure dignity in the relationships between individuals, known as attributed dignity. “Hospitals could use the attributed dignity scale in the same way they use patient satisfaction surveys, as an outcome measure,” she said. “You could use it as a pre- and post-[hospitalization] measure.”
Beyond asking questions, having the patience to listen to a patient's entire answer also helps maintain dignity, advised Dr. Jacelon. “Older adults often can't tell a story from the middle. They have to start the story at the beginning….You have to let them tell the story, because in the story is the kernel of what's important to them,” she said.
Gaining an understanding
It's time-consuming, but in addition to making the patient feel good, you might even learn something from all that listening. “Part of dignity is respect for what the patient knows, not just about her own body and her own life, but about the serious questions of illness that clinicians are dealing with. I think clinicians could learn a lot about their work from patients,” said Ms. Dresser.
Both physicians and patients currently have knowledge about dignity in the hospital that could be helpful to those working on this issue, she added. “We need more information from patients as well as from clinicians, based on their observations and experience about what they think a dignity violation is, and how it could be avoided.”
Aging will provide some baby-boomer clinicians with new perspectives on this issue, noted Dr. Bo-Linn. “They are encountering the health care system as patients themselves. They are also beginning to see the contrast with how they may be treating patients as a busy health care professional as compared with how they desire to be treated,” he said.
To bring this understanding to more clinicians, the Patient Care Program that Dr. Bo-Linn leads is providing grants to hospitals that develop projects on engaging patients and reducing preventable harms, including the loss of dignity and respect.
“Just as certain infections are considered to be events that should never happen, we also believe that loss of dignity and respect should be seen equally as preventable,” he said. “Even though it may be more difficult to identify and measure such things, it should not dissuade us from seeking as best we can to eliminate instances where patients and families feel disrespected.”
Efforts toward this goal will include gathering information from patients about dignity and respect and then training clinicians to implement changes in response.
Role models for appropriate behavior will be important to this process. “We're going to insist that everyone who teaches medical students is the kind of physician we want them to become,” said Dr. Leape. “They see how other doctors treat people and they copy them.”
Innovators may also look farther afield for demonstrations of how to treat a person with greater respect and dignity. “We believe that there are some models that would be helpful, among them being the service industry,” said Dr. Bo-Linn. “They try to understand the person in front of them as being a unique individual.”
Seeing patients as individuals with lives outside of their hospitalization is key to maintaining dignity, the experts said. “The staff in the VA hospital makes a point of calling patients ‘Sir’ and saying, ‘Thank you.’ They immediately enhance that person's status and recognize the service they've paid for their country. In public hospitals, there's no equivalent. There's no recognition that you're someone other than a patient,” said Dr. Jacelon.
Not even the experts are certain how to provide that recognition to every hospital patient, but they do agree that focusing more on patient dignity and respect could improve both patient satisfaction and safety.
“Treating individuals with respect and dignity not only ensures that [clinicians] are treating patients appropriately within the context of our professional ethics, but also will likely result in better outcomes for the patient, as well as greater levels of satisfaction with the experience,” said Dr. Bo-Linn.