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The Challenge of Family


 

It’s extremely hard being in a room with a family that is angry, confrontational, and hostile,” says clinical social worker Jane B. Hawgood, MSW, who often works with the hospitalist group on the General Medicine Service at the University of California at San Francisco Medical Center. “When you read about these cases in a textbook, it seems so clean and neat.”

Hospitalists have all encountered them: family members who, because of their behavior toward providers, come to be labeled as “difficult.” What are the best ways to deal with patients’ family members who are unresponsive, overbearing, or outright hostile to physicians and the care team? And how do you proceed to a treatment plan that is best for the patient?

The first step, believes Thomas Baudendistel, MD, FACP, associate program director of the Internal Medicine Residency Program at Sutter Health’s California Pacific Medical Center in San Francisco, and chair of SHM’s Ethics Committee, is to avoid using the term “difficult.”

“I think ‘difficult’ is a loaded term and kind of pejorative,” says Dr. Baudendistel. “When their loved ones are in the hospital, families are vulnerable. They don’t really know what to expect. I don’t know that I wouldn’t want my grandmother, or mother described as a ‘difficult patient,’ or a family member described as ‘difficult.’ Rather than saying, ‘this is a difficult family member,’ I would rather phrase it, ‘This is someone who has a lot of worries.’ ”

Hawgood employs a similar approach. “I like to define the situation as ‘a family member who is having difficulty dealing with the patient’s illness,’” she says. “If I hear, during rounds, that this family is difficult, I immediately begin asking myself, ‘Why are they having difficulty? Is this an interpersonal issue? Does this family member have a psychiatric history? Is there a history of a past problem with the medical system? Is it a financial issue?’ I really try not to presume things. I always try and keep an open mind about what a patient’s and family’s goals are, and what I can do to help. You need to clearly understand your goals and have good support from your team to redirect the energy.”

“Unrealistic expectations” might describe some of the encounters for Adrienne Bennett, MD, director for the Division of Hospital Medicine and associate clinical professor of medicine at Ohio State University. In her former post as founder and director of hospitalist services at Newton Wellesley, a community teaching hospital in the western suburbs of Boston, she and colleagues dealt with a relatively affluent patient population. Some of the patients and families, she says, “can sometimes be somewhat demanding and difficult if they feel they aren’t getting what they’re entitled to. In that sense, they can become ‘the angry daughter,’ as my colleague used to say.”

The whole healthcare system is so volatile now. People feel rushed; they feel [they are being] rushed out of hospital. They don’t have adequate healthcare insurance; they don’t have adequate care in the community. We send people out with trachs, tube feeds, open wounds, and pain issues. People are dealing with limited money, trying to juggle work, children, and elderly parents. So they have reasons to be angry.

—Jane Hawgood, MSW

Building Trust

Because they do not have an ongoing history with patients, hospitalists may often be starting at a disadvantage in forming a new relationship. Dr. Baudendistel believes hospitalists can quickly learn the skill of reassuring patients and their families. One way to do that, he says, is to “link with the primary care physician.” He often calls the primary care physician and tells the family of his conversations with the family doctor, thus establishing a level of comfort for them. He makes it clear to the family that he is available to them, giving them phone and pager numbers so they can easily reach him.

Dr. Baudendistel also tries to accommodate family members’ schedules, setting up visits when working family members are able to come to the hospital or making sure to have daily telephone contact if it is not possible to synchronize in-person visits with them.

Most families, he has found, are then willing to listen and work with him. As familiarity with hospitalists increases, family concerns about a “stranger” caring for their loved one slowly diminish. “Patients and families generally accept the idea of seeing a new doctor in the hospital a little bit more easily each year that goes by,” he notes.

Another technique used at California Pacific Medical Center, Dr. Baudendistel adds, is to pair a hospitalist with the same patient if he or she is readmitted. “We really believe in the continuity of the relationship, so we try to preserve that as much as possible,” he says, “because the big obstacle for hospitalists is always handoffs.”

On the Same Page

Intrinsic to forming a relationship with the patient and family is to discuss their goals of care, says Hawgood. Shana Weber, DO, FAAP, a pediatric hospitalist at Alaska Native Medical Center in Anchorage, agrees.

“You need to be on the same page,” she says. “Without knowing what the parents are hoping to get from their child’s stay before discharge, you really cannot help them.”

For instance, says Dr. Weber, some parents may be surprised to learn that their child is going to be sent home with a feeding tube or other nursing care needs.

“It is important to find out what their agenda is and what yours is. Parents’ expectations can be very different from ours,” she explains. “Letting parents know you’re listening—whether or not you agree with what they’re saying—is half the battle. You need to verify their feelings, let them know you’re listening to them, and that you understand their concerns.”

Use Team Resources

Accessing the expertise of other providers may be necessary to complete discharge plans for complicated cases. Dr. Baudendistel recalls a 30-year-old woman with a progressive neurological condition who had previously been living in the community. Her condition had deteriorated to the extent that she would no longer be able to eat safely, and, thus, she would not be able to return home. The team brought in a speech therapist, physical therapist, social worker, and discharge planner to meet with the family and present options.

Hospitalists interviewed for this article agreed that clinical social workers bring a much-needed perspective to dealing with families. One recent case at UCSF Medical Center involved a woman in her late 50s whose cancer, after multiple treatments and treatment complications, had come back very aggressively. One of her daughters, a young woman in her 20s, “had developed a very deep religious faith that she could cure her mother through prayers and faith,” recalls Hawgood. “As her mother deteriorated, the daughter became more angry and hostile to the hospitalists.”

Hawgood approached the daughter and asked if she would sit down and talk with her, and tell her what had gone wrong in the past, and “how we could improve things in the future.” As she listened to the daughter, she realized how much the daughter loved her mother and how desperately frightened she was.

“If I could help you in one way, what would that be?” Hawgood asked the daughter.

After a silence, the daughter replied, “We need a refrigerator.”

It turned out that the family was financially unable to replace a broken refrigerator. To take her mother home, the daughter needed a way to refrigerate enteral feeding supplies. And Hawgood was able to secure a refrigerator for the family, and says that the incident underscored for her the importance of keeping an open mind.

Later, when the mother was dying, Hawgood was again asked by the team to provide support for the daughter so that hospitalists could care for their patient. “She was so angry, and it was directed at the hospitalists,” recalls Hawgood. “It was just her absolute inability to accept that her mother, who was the center in her life, was going to die. You have to give people credit and respect. You have to understand where they’re coming from and what’s going to work for them.”

Training Adequate?

According to a 2003-2004 survey conducted by the American Association of Medical Colleges, 124 out of 125 medical schools included communication skills as required courses for their medical students.1 However, Dr. Baudendistel points out that there are currently no national standards for proficiency in communications skills and that the field is in relative infancy at this time. Inclusion of interpersonal and communication skills as one of the Accreditation Council for Graduate Medical Education’s (ACGME) core competencies will help focus more attention on how to teach communication skills, he believes.2

“Communication is now one of the six core competencies,” he says. “It’s no longer secondary to being a smart doctor: It’s equally important in the view of the ACGME. So I think that will help.”

Beyond standardization of communication skills curricula, it is also necessary, he emphasizes, to verify providers’ proficiency in those skills. In the California Pacific Medical Center’s residency program residents receive 360-degree evaluations. These go beyond the typical evaluations in the past, wherein residents would be evaluated by supervising attending physicians and interns working under them. Now, evaluations of residents are sought from nurses—and from the patients themselves. Obtaining 360-degree feedback from all those who have interacted with the resident functions as a valuable teaching tool.

Experience: the Best Teacher

While most agree that training and required communications courses should be increased, Dr. Bennett points out that some of the hospitalist’s expertise with family communications will simply evolve with time and experience.

“I’ve learned a lot from situations in group meetings with a social worker or a patient ombudsperson, just watching how they manage the situation,” she says. At Newton Wellesley Hospital, social workers and chaplains were sometimes better able to find the right way to phrase something so it came across in a way the family could accept, recalls Dr. Bennett. She raises the a case of a 50-year-old man who came in with cardiac arrest and whom they needed to withdraw from life support. He had been born and raised Catholic, but had converted to Judaism, which was his ex-wife’s religion as well as that of his children. He had an extensive family (he was one of 10 children), who were concerned about his ability to receive Catholic last rites. The chaplain understood the implications for both religions and was able to negotiate a compromise that satisfied both sides and allowed life support to be withdrawn.

Dr. Weber, who completed her residency at DeVos Children’s Hospital in Grand Rapids, Mich., praised the training she received in doctor-patient communications while in medical school. However, once she arrived in Anchorage, she discovered that the cultural norms of Alaska native people required some on-the-job learning.

She once asked an adolescent girl with Crohn’s disease whether she had any belly pain. “She wasn’t answering me, and I thought, ‘Oh great—just another typical teenage girl’” remembers Dr. Weber. “Well, I thought she wasn’t answering me, but she was lifting her eyebrows, which means ‘yes.’ But I didn’t know that.”

Dr. Weber has found nurses and other long-time hospital staff to be very helpful in learning how to communicate with her patient population.

Context and History

Hawgood reminds hospitalists that families often come into hospitals with past histories of things gone wrong.

“The whole healthcare system is so volatile now,” she observes. “People feel rushed, they feel [they are being] rushed out of hospital. They don’t have adequate healthcare insurance; they don’t have adequate care in the community. We send people out with trachs, tube feeds, open wounds, and pain issues. People are dealing with limited money, trying to juggle work, children, and elderly parents. So they have reasons to be angry.”

Families feel frustrated when their loved one is sick, agrees Dr. Baudendistel. “It may be that your role is to just let them vent their frustration.”

Says Hawgood, “I tell the people I train that I have nothing to lose. The patients and their families have everything to lose. So, even if I get off on the wrong foot, I’ll go back and ask, ‘could I start again?’ And usually, people will say, ‘yes.’ It’s up to me to make it work.”

Dr. Weber recalls one family at ANMC with a special needs child who had been in a Seattle hospital, and was readmitted to their facility with kidney stones. He was not getting better and the physicians recommended that the family travel back to Seattle, where a pediatric urologist could remove the stones. The parents were uncomfortable with the recommendation that their son return to Seattle.

“We did need to bring in a mediator, and have several family care conferences with the parents, with social workers and discharge planners, and all involved providers,” says Dr. Weber.

In the course of the conferences, the family revealed that their child’s disabilities were due to a missed diagnosis of meningitis when he was a baby. “They harbored a lot of resentment toward the medical profession in general,” says Dr. Weber. “It was hard to work through that. They couldn’t let it go—and I don’t blame them—and it caused them to always question our motives and our intentions.”

During the care conferences, the team let the family tell their story of the meningitis case again. Just by listening to the family’s history with that event, the team was able to validate the family’s concerns. The parents agreed to take their son to Seattle for the procedure, and later sent a thank you card to the pediatric team at ANMC that had treated him.

Don’t Make Assumptions

Hawgood always cautions physicians to enter the patient’s room with an open mind and to be open to cues and clues about the family’s situation. She praises the UCSF hospitalists’ training of young residents.

“They let them take the lead in patient interviews, then we all discuss how that interview went, and how things could have been done better,” says Hawgood. For instance, she recommends that hospitalists “allow for some silence in the room. You don’t have to fill up every minute with conversation. Look for the non-verbal cues, the things that weren’t said.”

In Dr. Weber’s hospital, pediatric patients come from all over state. It is not unusual for a baby to be in the neonatal intensive care unit for a while before the parents come back to visit. It would be easy to question, she says, whether these people are going to be good parents. “But until you know their social situation, you really have no place saying that,” says Dr. Weber. “You may find that they have six other children at home and cannot be here because they have no other caregivers for their children, and their village is 200 miles away.”

The Best You Can Do

Despite the care team’s best efforts, there will be a few cases, admits Dr. Bennett, where “you just can’t make much headway.” She recalls the case of an elderly man who had had a massive stroke, lived in a nursing home, and had not communicated for years. The man’s daughter was convinced, however, that he communicated with her and was “adamant that everything had to be done. We tried and tried,” explains Dr. Bennett, calling several group meetings and using hospital chaplains as allies, “but she just couldn’t hear it, and couldn’t see it [that her father would not get better]. She was too vested in believing that he did, in fact, communicate with her and that he would get better.”

In such cases the team may have to do the best they can to honor the patient’s and the family member’s value system and help them abide by that.

“There’s one other thing about difficult families and difficult patients: You have such an intense relationship with them that you don’t have with other people,” notes Hawgood. “If you can hang in there, they’re the best relationships you can have. You are so emotionally engaged in trying to make it work. I have chosen to work with hospitalists because of the approach they take. I think it’s the most efficient model you can use in a hospital. We really talk about the goals of care, and what we understand about the patient’s and family’s goals of care. We approach this from the point of view that they deserve care. What can we do to make a difference, so that it works for the patient and the families?” TH

Writer Gretchen Henkel lives in California.

References

Improving Communication with Families

“When the family member appears unresponsive, consider the context of the situation,” says Dr. Weber of the Alaska Native Medical Center in Anchorage. She works with many Alaska native grandparents who have become the parents of their grandchildren. Many elders are reserved people and have a tradition of not challenging an authority figure such as a physician.

“Sometimes they don’t ask tough questions that maybe you initially forgot to answer,” she says.

Dr. Weber finds it helpful in these cases to query the parents (or grandparents): Does that make sense to you? Can you repeat that regimen back to me so that I know we understand each other?

When she encounters an unresponsive family member, clinical social worker Hawgood of the University of California, San Francisco Medical Center invites the person to call her or meet with her privately, at their convenience. She recalls visiting the room of an aging father whose daughters were not talking and appeared angry.

“We thought it was strange,” she recalls, “because the treatment we were offering would have given him a good outcome and a good quality of life. We were perplexed about why he and the family were refusing treatment.”

Acting on a hunch that there might be an underlying family secret, Hawgood gave her card to one of the daughters. In a telephone call, the daughter revealed that the father had committed incest with all four daughters. This particular daughter was afraid she would be held responsible if the father died. Hawgood was able to reassure the daughter that the illness was not her fault, and that the father was refusing to be treated of his own volition.

If the family appears angry or demanding, it is important to define the difficulty, notes Dr. Baudendistel of California Pacific Medical Center in San Francisco.

“If the family is difficult because they are demanding of your time, that’s very different from the family who has unrealistic expectations—who want the MRI of the left foot done, for instance,” he says.

Whenever possible, Dr. Baudendistel partners with the patient’s primary care physician. “I think bringing in the primary care doctor or keeping that person in the loop is really important,” he continues. “That is the person with whom they had the continuity and the relationship, and it is who they trust.”

Sometimes the family member’s anger stems from a belief that the hospital is trying to discharge their loved one too soon. Often families don’t realize all that has actually been done during the hospital stay and what the plans of care are after discharge, and resolving any miscommunication satisfies them that the discharge isn’t premature, says Dr. Bennett, director of the Division of Hospital Medicine at Ohio State University. Such situations can arise when the hospitalist talks to one family member who didn’t communicate accurately with another, who then is angry and thinks the physician is ignoring their concerns.

“Often just sitting down with the family, reviewing everything, and making sure everybody understands and is on the same page with what is going on, can help a lot,” she says. “You likely have already considered or evaluated the issues. Families just need to feel they have been heard and know you have addressed all the issues. Unfortunately, there are some instances where that won’t help. I often found [at Newton Wellesley Hospital] that if we were at an impasse and had done our best with help from social work, that involving the patient ombudsperson could be very helpful.”

Some of her colleagues, especially those new to the hospital, were sometimes leery of involving the ombudsperson. Despite a perception that ombudspersons are adversarial, they can actually be a physician’s ally in negotiating with the family, she says, to help resolve conflicts about treatment decisions and discharge plans.—GH

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