What would you want for your family?
Nine years ago, AJN published a Viewpoint article asserting the essential role of family caregivers. The article featured an elderly woman recuperating in a hospital, her daughter at her bedside planning for discharge with the care team. The authors argued that family engagement creates the foundation for safer care, better patient outcomes, and greater efficiency for nurses.
The same patient’s experience would likely have been very different during the Covid pandemic, especially during the intermittent surges over the past two years. The patient would be alone in the hospital, her daughter’s assurances communicated through a digital tablet. Overstretched nurses would provide updates to the family over the phone. Discharge education would occur through a car window moments before the patient’s daughter drove her home, feeling unprepared for what came next.
COVID-19’s highly transmissible properties have complicated the family engagement equation. Over the past two years, hospitals and nursing homes have enacted, eased up on, and then reinstated visitation bans, at times leaving questions as to whether restrictions implemented to reduce disease spread may be more detrimental than beneficial.
As we contended in recent months with the extremely contagious Omicron variant, family caregivers who had assumed an essential role as advocate, family spokesperson, and care coordinator were once again separated from loved ones at the times they needed them most.
Nurses’ experiences with family presence during COVID.
In a May 2021 American Nurses Foundation Pulse of the Nation’s Nurses survey, more than 3,600 nurses shared their experiences to date with family presence restrictions during the pandemic. Ninety percent said their organization’s family presence policy at least sometimes conflicted with what they felt was in the best interest of their patients. For nearly half, this was the case frequently or always.
One nurse shared, “Without family at the bedside, I became the patient’s everything.…Unfortunately, countless times, I was not enough. They needed their families and those closest to them. It was an unobtainable goal and my patients suffered greatly because of it.”
Just over 80% of survey respondents reported that supporting patients with little or no access to family created an additional burden on them. They described how bans on family presence recast nurses as virtual switchboard operators keeping families connected remotely, infection control monitors, and visitation policy enforcement officers who have continued to bear the brunt of antagonistic community members.
Family as reinforcements for the care team.
The added workload, emotional burden, and dissonance with their personal and professional values left many nurses feeling depleted and contributed to crisis-level staffing shortages. Health care organizations are now struggling more than ever to maintain historic levels of safe, high quality care in an environment where burnout and retention issues abound.
This is all the more reason to embrace family as members of the care team. Supporting their in-person presence can reinforce a severely diminished workforce by providing extra monitoring and support for their loved ones. At least one study associated family visitation restrictions during the pandemic with an increase in falls and sepsis compared to that seen in hospitals that continued to support family presence.
Course correcting.
Rigid restrictions to family presence may have been reasonable at the onset of COVID-19 when there was no vaccine, limited PPE supplies and testing capabilities, and tremendous uncertainty about the virus.
These are different times, though. With steadily falling case numbers, improved access to PPE and testing, and a greater understanding of the costs of restrictive family presence practice, health care leaders are called on to adopt a more balanced, evidence-informed approach to these decisions—now and in future public health crises.
A framework for assigning levels of access as conditions change.
A new Family Presence Policy Decision-Making Toolkit released by Planetree International and funded by the American Nurses Foundation introduces a nurse-driven decision-making framework for supporting family presence in a safe and manageable way. It outlines a process for assigning levels of in-person family caregiver access across the organization as conditions change, taking into consideration factors like vaccination rates, testing capabilities, rates of spread, staff resources, and an evidence-informed risk–benefit analysis.
For instance, during times of significant community spread, in-person visitation may be limited only to “essential family caregivers” who have been screened for vaccination status and/or a negative test, oriented to infection control protocols, and have agreed to adhere to safety measures. These may include limits to same day reentry, remaining only in designated areas, and limiting the number of family caregivers allowed at one time.
Adopt inclusive decision making.
Another vital strategy for preserving safe and responsible family presence is including nurses, patients, and families when devising visitation practices. Almost half of the nurses surveyed reported they were not included at all in their organization’s discussions about family presence policy changes. And yet more than 80% agreed that, with the right measures, in-person family presence can be supported during a pandemic.
Drawing on these convictions—and nurses’ well-established resourcefulness—is a must for developing more person-centered policies moving forward.
Whether this public health crisis persists with new variants or continues to wane according to the current trend, nurses will strive to fulfill their responsibility to advocate for the best interests of patients. We must continue to adopt a balanced approach to family presence as a strategy for safeguarding quality, patient safety, and workforce well-being—now, and in whatever public health emergencies the future may bring.
by Sara Guastello, senior vice president, Person-Centered Care Standards, Planetree International; Kate Judge, executive director, American Nurses Foundation; Susan B. Frampton, PhD, president, Planetree International
The staff of the ICU at Hartford [CT] Hospital were unsparing in their efforts to involve the family of Jeanette Fresina at the height of the COVID-19 pandemic. Zoom and later family visits facilitated by nurses were unstinting and offered with the grace one sees in most nurses during troubling times.
The comments about the negative effects on nurses for being family substitutes detracts from an otherwise superb article about how much nurses have helped families cope with all the social vagaries during the pandemic. The loss of our beloved sister after 8 weeks in the ICU was softened by the ministrations by her (and phone and zoomed family) nurses, none of whom complained about their strained circumstances. Your recommendations to continue person centered services are spot on. I am so proud of my profession.