Dealing with hospital patients' families isn't always easy. “As practitioners, we've all experienced family members who try to obstruct what you want to do,” said Margaret Beliveau, MD, FACP, a geriatrician and associate residency program director for Indiana University in Evansville, Ind. “Families can have their own agenda [or] family members might have different agendas.”
However, she and other experts are increasingly finding reasons that hospitalists should try to overcome the challenges and work more closely with patients' families during hospitalization.
“Generally, the patient is better off when family is involved,” Dr. Beliveau said. “That should be part of what we do as clinicians, particularly in the hospital, which is a tremendously stressful situation for most patients. It's really important to have an advocate for the patient who is sitting there at the bedside with them.”
As the population continues to age, the involvement of family members and caregivers becomes ever more valuable in the hospital setting, agreed David Oliver, MD, a geriatrician and internist with the Royal Berkshire NHS Foundation Trust in the United Kingdom. Inpatient family members and caregivers can often provide the missing links, he said, aiding in clinical decisions, enhancing treatment, and generating improved outcomes.
“Interventions to better include patients and families in care, whether by including families on rounds, teaching CPR to family members, or engaging families in hospital safety reporting, are critical,” said Alisa Kahn, MD, a pediatric hospitalist at Boston Children's Hospital who has researched family involvement in hospital care. “Engaging patients and families isn't just a ‘feel-good’ solution.”
Dr. Khan led a study focused on improving communication among physicians and family members during rounds. Although the study was conducted in pediatric hospitals, it included interventions that could be applicable with adult patients, including families speaking first during rounds, clinicians speaking to families in a manner they could understand by minimizing medical jargon and adhering to principles of health literacy, families reading back their understanding of the plan at the end of rounds, and finally, a real-time written summary of rounds.
The results, presented at the 2017 Pediatric Academic Societies Conference, showed that after the intervention, adverse events decreased by 36% across the hospitals, while family assessment of overall quality of communication improved, as did other communication measures such as family and nurse engagement.
The study shows how changes during rounds can make positive differences for families and overall care quality, Dr. Khan said. “We believe that engaging families doesn't just feel like the right thing to do, it can actually make hospital care safer, as our study suggests,” she said.
A recent study in adult ICUs also looked at the effects of engaging families more in rounds. The analysis, published in the August 2018 Critical Care Medicine, examined whether family involvement in rounds impacted length of rounds, trainee teaching, or round quality. Among 302 rounds observed in seven Canadian hospitals, results showed that length of rounds increased by a median of four minutes when family was present. There was no significant difference in the proportion of rounds that included bedside teaching or the nature of teaching. The quality of rounds did not significantly differ when family attended.
According to the study authors, patient and family participation during rounds allowed for timely clinical decisions tailored to the patient's psychosocial background. In addition, consent for investigations and treatments was facilitated by family attendance. The study also found that ICU team dialogue was more focused on issues related to patient care when family were present and there was less tangential conversation, cynicism, judgmental language, and critiquing of ICU team members and other care teams.
Other research in this area has offered focused interventions to support families in the ICU. A study led by Douglas White, MD, MAS, at the University of Pittsburgh Medical Center (UPMC) sought to improve the quality of decisions made by surrogates of incapacitated, critically ill patients while also lowering their psychological stress. The intervention, implemented in ICUs at five UPMC hospitals, included advanced training for nurses on supporting surrogates of seriously ill patients and the development of a family-support pathway, in which nurses met with families on a daily basis and arranged clinician–family meetings within 48 hours after enrollment and every five to seven days thereafter.
After six months, the family-support intervention had not significantly affected the surrogates' burden of psychological symptoms, according to results published in the June 21, 2018, New England Journal of Medicine. However, the surrogates' ratings of and the patient- and family-centeredness of care improved, and length of stay in the ICU was shorter with the intervention than with usual care (6.7 days vs. 7.4 days).
That the initiative did not decrease psychological distress in surrogates may mean that outside factors, such as high caregiving needs after discharge, financial difficulties, or the death of a patient after discharge, play a larger role in caregivers' distress, said Dr. White, vice chair and UPMC endowed professor for ethics in critical care medicine.
The simultaneous improvement in families' perceptions of patient-centered care and length of stay was important, though, according to Dr. White. “That to me suggests that the intervention decreased overtreatment at the end of life judged by what patients would choose for themselves,” he said.
In addition, the intervention highlighted the benefits of hospital teamwork in addressing the emotional needs of inpatient families. “This study shows that interventions can be developed that really leverage the expertise of the interprofessional team, including not only the physician, but also the nurses, social workers, and spiritual care providers,” Dr. White said.
Ways to involve families, big and small
Applying a large-scale family-support intervention to hospital care may seem daunting, but there are smaller ways to involve families during daily care of patients, experts said.
“They can be involved in aspects of care on the ward, such as helping their loved one eat, giving them company and reassurance, helping us plan their transition from the hospital, “ said Dr. Oliver. “The other side of the coin is that if caregivers are around, we, as doctors, nurses, and other health care workers, can keep them updated and in the loop, even when the news isn't good—ultimately a win/win because they will be happier, [the] hospital stay smoother, and complaints about care and communication less likely.”
Hospitalists can facilitate families' ability to be more involved in care by inviting them to participate early and often and framing conversations around their responses, Dr. Khan said. Ask them about goals, concerns, and questions, and use clear and concise communication that minimizes medical jargon.
Communication barriers may keep medical staff from involving family members in care more often, said Wendy Nickel, MPH, Director of ACP's Center for Patient Partnership in Healthcare and Quality. Patients and families and clinicians often have differing ways of conversing, she said. Physicians frequently use clinical language and abbreviations that may confuse patients and their families. Using simple sentences and providing information in digestible chunks is a better approach, Ms. Nickel said.
The cultural background of patients and their families could influence how they communicate with health care staff and how they make decisions, Ms. Nickel added. Having knowledge of cultural norms within a family can help physicians better communicate and understand how the family operates, she said. For instance, some families may prefer to discuss information with all family members or to get approval from an established family leader before making a medical decision.
In addition, pay attention to nonverbal communication from families; indirect cues may convey how family members are feeling, Ms. Nickel recommended. “Read body language and facial gestures,” she said. “If you see that a person has their arms folded [for example], it can mean they are not feeling like they want to communicate at that time.”
Clinicians should also ensure that certified interpreters are used with families from background with limited English proficiency to make sure all families have an equal opportunity to participate in care, Dr. Khan noted.
Involve families in discussions about the limits of treatment, CPR, and patient preferences, Dr. Oliver said. Make it clear to families how they can be involved more closely, how they can help, how they can get information, what they can expect, and what medical staff can expect from them, he added.
Acting on family members' wishes for care and also providing care that's in the best interest of the patient can be challenging, because some family members may want more or less care than the patient wishes, cautioned Dr. Beliveau. “When there are family members disagreeing, that can be very challenging for the nurses and doctors taking care of the patient,” she said. “You have to be very careful about letting the patient speak for themselves.”
When disagreements among family members arise and the patient is incapacitated, Dr. Beliveau recommends organizing a meeting with the family to discuss the patient's prognosis, quality of life, and survival rate. The conversation should focus on the patient's wishes and what the patient would decide in the circumstances.
“Frame it as, ‘What would the patient want to have happen to them?’” she said. “I think a lot of times when you frame it like that, families come around.”
In the case of a disagreement between a doctor and family member, it may be necessary to ask for help from a third party, such as a chaplain or a hospital spiritual advisor, Dr. Beliveau said. Such third parties may also be able to help if conflict arises between a patient and his or her family. Another option is reaching out to a hospital ethics committee.
Open visitation is another method of involving families that carries both benefits and downsides. “In my personal experience, open visiting may lengthen your ward round by 20%, but you get it back in spades with happier patients/families, fewer complaints, better care planning, [and] better transition from hospital,” said Dr. Oliver.
There are various considerations in relaxing the restrictions on visiting patients, such as a hospital's layout, the severity of conditions, and overall influx of visitors. Clearly, in the case of a dying or critically ill patient, it makes sense to allow families open access to the patient, Dr. Oliver said, but there are also benefits to open visiting even when patients are not as ill.
“Especially when they have dementia or are frail and vulnerable, the family can help with hands-on care with an understanding of what that person wants and helping navigate and explain their care,” he said.
He also suggested that hospitals have a day room for families that is separate from the main waiting room and includes beverages, reading material, food, and sleeping furniture for families that want to stay overnight.
Clinicians frequently believe that increasing family involvement will take up significant time and disrupt workflow, according to Ms. Nickel.
“There's a perception that it's going to take a lot more time to engage a family member,” she said. “Actually the data has borne out that it doesn't take more time to ask a few more questions or engage [families] in a conversation, it actually makes the care more efficient because the [patient and family] may be more open and up front.”
Clinicians should also look for ways to turn negative experiences into positive ones for patients and their family members, Ms. Nickel said. Reaching out to a disgruntled family member and asking them to contribute to a constructive remedy can make all the difference in their experience, she said.
“I've experienced personally where I've worked with patient and family where they felt they had a bad interaction and we worked together to see if we could identify a solution,” she said. “In some cases, it was really a process or systems issue and had nothing to do with the care team.”
A key step for physicians is modifying how they typically view families and their needs, Dr. White stressed.
“Reframe in their mind what families need, away from an idea that they just need information to make good decisions, toward an idea that they need to have clinicians who are supporting them through the emotional and psychological complexity of having a really sick loved one,” he said.
This shift in thinking may be easier for some physicians and more challenging for others. Dr. White recommends communication skills training programs for clinicians who need help changing their mindset or who need ideas on how to modify their approach with families. For example, a nonprofit called Vital Talk provides online, interactive clinician and faculty development courses to improve communication among physicians, patients, and family members.
Hospital leaders should consider creating hospital policies that addresses family communication and shared decision making, the experts said. To this end, ACP offered ethical guidance for managing caregiver relationships in a 2009 position paper, “Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships.”
“Part of the clinicians' job is to move families from an overwhelmed, emotional state to a place where their emotions and rationality can work together,” Dr. White said.