Active engagement of patients and their families in decisions about their own care is a foundation of a high-quality, person-centered health care system. Expanding the acceptance and participation of family care partners at the bedside has been an ongoing effort by patient advocacy communities over the past several decades. In this context, family refers to any support person defined by the patient or resident as family, including friends, neighbors, relatives, and/or professional support persons. Great progress has been made to invite partners into the labor and delivery room, to welcome parents to stay at their child’s side throughout a hospitalization, and to honor the wishes of terminally ill individuals to have family with them during end-of-life care.
Significant clinical, psychological, and emotional benefits of these practices have been well documented for patients, family, and health care professionals.1,2 The National Academy of Medicine has asserted the importance that “family and/or care partners are not kept an arm’s length away as spectators but participate as integral members of their loved one’s care team.”3 The Joint Commission recommends that family be allowed to “participate in end-of-life care by providing comfort during the dying process” and that we provide “the patient access to the support person at all times.”4 The Emergency Nurses Association has led the movement to welcome family at the bedside during resuscitation attempts, citing the growing scientific evidence supporting the emotional and psychological benefits.5
These advances and their associated benefits have eroded during the global response to the COVID-19 pandemic. Health care teams have worked tirelessly to provide optimal care for patients, with the added stress of finding a balance between limiting exposure to the virus and supporting the need for familial support. Out of an abundance of caution, widespread restrictions or complete bans on family presence have been implemented in many care settings, yielding substantial negative unintended consequences.
Some women in labor have traveled outside their communities to seek care at hospitals that allow birth partners to stay during labor and delivery. Parents of children with serious symptoms of illness have delayed bringing their child to the hospital for fear that they will be separated. Families have removed elderly parents from long-term care centers following elimination of family visitation. People with cognitive impairment have been severely traumatized upon admission to facilities that have separated them from their customary caregivers. Terminally ill individuals have died in hospital intensive care units with staff left to support all of their patients’ needs without the benefit of family present.
These challenging situations are perhaps understandable given the acute and widespread nature of the pandemic, which placed immense stress on the delivery system. Equally clear, however, is that our health care system is not well positioned to preserve family engagement during the COVID-19 crisis. As we better understand how to contain the novel coronavirus and expand the availability of protective gear and virus testing, it is time to reassess family presence restrictions.
To that end, Planetree International and The Pioneer Network recently convened an international, multistakeholder coalition including patient, family, and elder advocates along with experts in quality, safety, and infectious disease to develop a new set of Person-Centered Guidelines for Preserving Family Presence During Challenging Times. We came together around a shared conviction that safe family presence can be practiced during the COVID-19 outbreak with a well-designed plan. The resulting guidelines delineate clear, safe, and humane approaches that promote shared decision-making and respect the rights of all groups involved. When health care organizations make determinations without including others affected by those decisions, such as patients and their families, it undermines the principles of person-centered care.
The coalition established 8 critical guidelines to preserve family presence, briefly summarized here:
Assess and continually reassess whether there is a need for restrictions based on current factual evidence.
Minimize risk of physical presence by following appropriate infection control guidelines.
Communicate proactively so families do not appear at a facility unaware of restrictions.
Clearly state compassionate exceptions to restrictions.
Minimize isolation in cases where family is unable to be physically present.
Use a shared decision-making approach to communicate risks and benefits in cases where family can be physically present.
Enlist family as members of the care team who share in the responsibility for abiding by established safety protocols.
Enhance discharge education and follow-up to support successful transitions of care.
The goal of the guidelines is to support alignment of safe, compassionate family presence policies within communities and regions during challenging circumstances, starting with distinguishing between casual visitation and the essential role that family care partners play as members of the care team. These guidelines have influenced policy in several states, including the change focusing on nursing home residents in Indiana, where the ability to have an Essential Family Caregiver designated to provide in-person support went into effect recently—with the guidelines referenced as a source.
Though the COVID-19 outbreak was the impetus for publishing the guidelines, they have applicability beyond a pandemic. Any time of acute crisis within a health system poses a risk to partnerships with patients and families if crisis management efforts fail to incorporate their perspectives and voice. These guidelines can be used not only to respond to the current crisis but to develop proactive and person-centered crisis response plans for the future.
Open Access: This is an open access article distributed under the terms of the CC-BY License.
Corresponding Author: Susan Frampton, PhD, Planetree International, 130 Division Street, Derby, CT 06418 (email@example.com).
Conflict of Interest Disclosures: None reported.
Acknowledgments: Submitted on behalf of the 35 organizations who contributed to the development of, and formally endorsed, the Guidelines to Preserve Family Presence During Challenging Times. We acknowledge the contributions of the members of the Pop-Up Coalition to Preserve Family Presence, including patient, family, and elder advocates; clinicians; and expert advisors who contributed to the development of the Guidelines to Preserve Family Presence described in this article.
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Frampton S, Agrawal S, Guastello S. Guidelines for Family Presence Policies During the COVID-19 Pandemic. JAMA Health Forum. 2020;1(7):e200807. doi:10.1001/jamahealthforum.2020.0807