Recognizing Family Engagement as a Necessary Extension of Patient Care in Cardiovascular Medicine

Enforced isolation from family members and caregivers amidst the COVID-19 pandemic, particularly for hospitalized patients, has highlighted the tremendous importance of family engagement in patient care. Due to inherent challenges the extent of family engagement is not uniformly assessed, and standard definitions as to what constitutes family versus caregiver for example are lacking. Therefore in the absence of sufficient data to demonstrate quantifiable benefit, alerting patients and providers as to the importance of family engagement may prove elusive. In the timely American Heart Association (AHA) Scientific Statement “Engaging Families in Adult Cardiovascular Care,” Goldfarb et al provide astute insights as to the various clinical contexts wherein family engagement must be considered as a part of cardiovascular patient care. The overarching goal is to increase awareness as to the importance of family engagement in cardiovascular care and subsequently provide health care professionals and stakeholders practical guidance for its incorporation into routine practice. Beyond delineating its value and suggestions for implementation, challenges, opportunities, and gaps in knowledge also warrant attention. Prior documents have predominantly addressed the role of family engagement in acute and critical care settings as well as in noncardiac care. The incremental value of this first-of-its-kind document is its comprehensive description of issues relevant to family engagement across chronic cardiovascular care settings as well.

Definitions

Firstly, it is vital to define terms that are often used interchangeably despite distinction.

• Family, for example, is defined as any person or persons whom a patient wants to be involved in their care; it is not limited to biologically-based relationships, and can include friends, religious group support members, and neighbors.¹ Expanding the definition of “family” likely allows for more productive interactions with key players in the patient’s care.
• Engagement is defined as active involvement of patients and families in healthcare decision-making. The authors state in this process clinicians should make choices “with” rather than “for” their patients and families.
  • Family engagement can take the form of passive involvement, such as presence at medical encounters, and active involvement, such as participation in care team meetings and in the role of surrogate decision-maker.
  • Additionally, family members often fill the role of direct caregivers, participating in activities such as feeding, hygiene, and fall prevention. Family members can also participate at an organizational level, with involvement in hospitals and healthcare institutions.

The engagement of family in patient care cannot follow a “one-size-fits-all” approach, and it is important to acknowledge the necessary diversity and adaptability required of individual patients in a particular context. A scenario of cardiac arrest is vastly different from chronic heart failure management in the outpatient setting, yet both pose tremendous stress, burden and need for family engagement in unique ways. Goldfarb et al discuss family engagement in many contexts, including the acute care setting, outpatient setting, and during pandemics. Context is not limited to the physical setting, but also applies to patient- and family-specific factors, including cultural differences, complex family structures, and limitations in patient decision-making capacity. The authors also address special circumstances and populations, such as underserved groups, patients of diverse ethnic backgrounds, elderly patients with dementia, and nontraditional family units. Transitions in care are also addressed, particularly the transition from pediatric to adult care.

Particularly relevant to today’s world amidst a pandemic, the committee importantly acknowledges the unique challenges posed by COVID-19 on engagement of family in patient care. On one hand, public health compels a limitation on personnel to limit undue exposure and spread, while ensuring patient support and communication with family. The authors aptly advocate whenever possible to avoid a “no-visitor” policy, and instead propose allowing one “essential” family member per patient for designated time periods. In doing so, it is likely to be more feasible to engage the identified family member in educational discussions and incorporate them into the team approach. If no family members are able to visit, video communication tools can be employed. Ultimately, communication, virtual or in-person, is key to effective family engagement.

Benefits

While it can seem burdensome, there are many benefits of family engagement. These include but are not limited to increased care satisfaction, improved psychological well-being, and improvements in medical outcomes, such as shorter ICU length of stay.² The benefits of family engagement are not limited to the care of our patients but also expand to the experiences and health quality of our patients’ family members. Family members engaging in their relative’s care often experience improvements in their own mental health, as well as increased preventive screening for cardiovascular disease.²

Importantly, Goldfarb et al address the issue of caregiver stress. This is an ever-increasing issue, particularly among chronic cardiac patients, and must be balanced when engaging families. Caregiver stress can take the form of psychological strain, financial strain, and self-neglect among other manifestations. Most studies on cardiovascular-based interventions aimed at assessing caregiver support programs have involved heart failure caregivers.³ They have noted many unmet needs including education in medication and device management, balancing of responsibilities, and self-care. There is currently a mixed signal of benefit among these studies, which have examined the value of interventions such as in-person nurse psychoeducation support.³

Future Directions

Family engagement is an area of clinical care that requires more attention going forward but a scientific statement acknowledging its importance is a vital first step! As patients with cardiovascular disease overcome acute events, chronic care is of equal if not more importance. As such, it is increasingly important to engage caregivers and family members in the care plan. Future research endeavors should be devoted to the systematic collection of data as to the degree of family engagement, its impact, optimal methods for caregiver support, and ultimately standardized approaches to family engagement as a part of care delivered to patients with cardiovascular disease.