- When patients are admitted to the hospital or diagnosed with a potentially life-changing illness, they are hardly ever alone.
More often than not, patients have a network of family and friends behind them, and providers need to practice strong family engagement to incorporate that support system into patient-centered care.
Family engagement — or the incorporation of family members and caregivers in patient-centered care — is an integral part of patient engagement, Jill Harrison, PhD, recently told PatientEngagementHIT.com.
Family members not only provide emotional support for patients, but they can also serve as secondary caregivers for patients and mitigate many of the logistical issues associated with treatment and hospital stays.
As healthcare organizations work toward improving patient-centered care, they would benefit from understanding how to incorporate family members into treatment. Planetree is an organization specializing in patient-centered care strategies where Harrison serves Director of Research. Based on the lessons learned there, Harrison contends that healthcare organizations can offer family engagement both inside and outside the facility.
By creating a web of family engagement and outreach, healthcare organizations can ensure family members are prepared to support patient health needs and goals.
Family engagement drives hospital safety, patient comfort
According to Harrison, family engagement is vital in the hospital setting because it allows the family member to support patient understanding and serve as a second line of defense against hospital harms.
“When a patient is in the hospital, they need an extra set of eyes and ears to understand things,” Harrison explained. “Having a family member by their bedside after surgery is one of the greatest things a family member can do in terms of safety.”
For example, having a family member present and aware of treatment plans is an important method for ensuring that medications aren’t mismanaged or that the patient remains comfortable and receives logistical support that can prevent adverse safety events. In some cases, Harrison said, empowering family caregivers can prevent death or other irreparable damage.
Family members are also irreplaceable sources of patient comfort, Harrison added. This realization is important for all patients who might be scared or uncomfortable in the hospital, but especially for patients who might have dementia or another form of cognitive impairment. Having a family member involved in treatment not only brings comfort to the patient, but might make it easier for the clinician to deliver treatment.
For example, healthcare organizations should make sure there is room for a knowledgeable family member to support the patient during chemotherapy or blood draws.
“Sometimes patients have dementia or cognitive impairment and they are isolated from their family members,” Harrison said. “This can lead to all sorts of refusals to give blood, or distress, or challenges. Family engaged care makes sure there is room for that other person if the patient wants that.”
Family members offer support in outpatient care
Typically, healthcare organizations discharge patients into the care of family members. Thus, it is critical that family caregivers are knowledgeable about a patient’s care and can help her on the road to recovery.
“By and large, we are discharging patients into the care of family members,” Harrison explained. “If they are not trained, aware, and educated, patients are likely to end up back in the hospital.”
Harrison recommends that more healthcare organizations create protocols for supporting family caregivers. Whether it be ensuring the family member is comfortable during her stay at the hospital or empowering these individuals with knowledge to provide care outside the hospital, these steps need to be methodical and patient-centric.
“Planetree has a program that allows people to say that they want help with wound changes, or help ambulate their loved one, or help check a tracheotomy if the patient has one,” Harrison said. “Caregivers go through a training program with the nursing staff and learn how to provide that care so that when patients get out of the hospital setting their family members are ready to take that all on.”
Healthcare researchers can also do more to support family caregivers, Harrison said. A plethora of resources and research are available to help a family member improve her loved one’s care, but too often barriers keep laypeople from accessing these materials.
“A lot of patients and families are kept on the periphery on research in patient-centered care,” Harrison maintained. At Planetree, Harrison and her team are trying to improve this issue, working with the Patient-Centered Outcomes Research Institute (PCORI) to determine how research can better support patients and their family members.
“What is it that’s most important to you, the patient or the family member living with diabetes, for example? What questions do you need researched? We make sure that that gets funneled into research agendas and priority setting and funding,” Harrison observed.
Overcoming challenges to family engagement
There may be no such thing as too much family engagement, but according to Harrison it is critical for hospitals to know how to manage concerned family members. While healthcare organizations need to make sure they have the right support in place for family engagement, they also must understand how to mitigate family requests.
For example, when a patient has experienced an extreme trauma and is receiving treatment in the ICU, clinicians often face an onslaught of family concerns that can interfere with their work to save the patient.
“I spoke with a nurse in critical care and she said that she spends almost three hours per day on the phone with family members because they want to get updates, which I understand,” Harrison said. “But without it being organized, then family engagement can eat away at staff time.”
Harrison suggests ICUs employ a family care partner, a point person whose sole responsibility is interacting with and engaging family members. Care partners can take these family calls and requests, handle them with compassion, while allowing clinicians to deliver the care needed to save the patient.
Providers may also face challenges when patients and family members have divergent care goals, especially in end-of-life care preferences. For example, a senior patient who has COPD may want to have a cigarette on his porch for his remaining days. His children may want him to quit smoking to prolong his life.
Harrison says the first step to mitigating divergent goals is to understand that most parties have the same end goal in sight. At Planetree, Harrison employs a vacation metaphor.
“If we’re going to France, you might want to go see the Eiffel Tower but all I want to do is eat different restaurants,” Harrison explained. “It’s the same destination, the same trip, but we have different desires. This is important when you think about moving into a nursing home or end-of-life preferences.”
In a nursing home, an adult child may want her mother to regularly attend Bingo to make sure she is socializing and engaging in the community. However, the mother may have different priorities that Harrison says must be respected.
“While there are good intentions, there must be a balance between honoring what the patient wants and what the family wants,” Harrison remarked. “We have to make sure, especially in long-term care, that we don’t disempower the patient from making her own decisions and charting her own life and rhythm. It needs to be a partnership.”
Ultimately, it will be important that healthcare organizations understand the entirety of what patient-centered care entails. In many cases, patient-centered care does not start and end with the patient.
Instead, it centers on the patient alongside her support system, Harrison said. By putting the role of the family member in the context of patient needs and preferences, clinicians can ensure they equip family members with the knowledge and support necessary to improve patient care.