It’s time to recognize the vital role of family engagement in health care
By Laura-Lee Nuttall
August 28, 2023
Since the emergence of COVID-19, health-care visitation policies have been in flux. Recently, however, many pandemic-related restrictions — including limited visiting hours, screening protocols, vaccination requirements and restrictions on designated caregivers — have been lifted. The restrictions acted as barriers between patients and the people they love. In this article, I describe the benefits that family members offer, review the effects that restrictions had, and encourage nurses to be advocates to ensure health-care institutions take an ethical approach to family visitation policies.
Families as health-care partners
In the years leading up to the COVID-19 pandemic, there was a growing movement toward increasing family involvement in health-care institutions. Research suggested that having family present in the hospital led to better patient outcomes (Dokken, Johnson, & Markwell, 2021). Family presence was associated with improvements in patient safety, communication between patients and the health-care team, patient satisfaction and the emotional well-being of caregivers and patients (Davidson et al., 2017).
By offering emotional support, advocating for their loved one’s needs, and participating in their care, family members help bridge the gap between the patient’s current health crisis and their healthy self. When patients return home, they often still require assistance with their personal care. Family is frequently called upon to step into the gap between the hospital and independent living at home. Involving family throughout the patient’s health journey allows for a seamless transition.
Conversely, closed visitation during the pandemic was associated with detrimental impacts on patient outcomes.
Research has revealed that patient isolation was associated with increased confusion and the use of sedation medications (Abbasi, 2020). During the lockdowns, data revealed an increase in falls and sepsis (Silvera, Wolf, Stanowski, & Studer, 2021). Long-term care (LTC) homes reported that residents experienced weight loss and showed other signs of distress (Abbasi, 2020). This was demonstrated most profoundly in the choice by some LTC residents to request medical assistance in dying (MAID) over the isolation they were experiencing in their care homes. Nancy Russell, a 90-year-old LTC resident, made this choice (Favaro, St. Philip, & Jones, 2020). Nancy was described as a spry, social person who was curious about life and loved engaging with others. During the first lockdown, her health started to decline. She was isolated exclusively to her room at one point for two weeks. She told her family she did not want to go through that again. Her physical and mental health declined, and she was granted permission to go through MAID. This experience took such a toll on LTC residents that it was named “confinement syndrome.” One person reflected, “We’re saving them to death” (Yanes, 2021), highlighting the detrimental effects of prolonged isolation on residents’ physical and emotional well-being.
COVID-19 restrictions have been shown to cause psychological harm in a variety of patient care situations beyond LTC, including birthing moms experiencing difficulty bonding with infants in the neonatal intensive care unit (ICU), as well as the psychological trauma experienced by families separated from loved ones in the ICU. According to Montauk and Kuhl (2020), “The psychological impact of COVID-related separation on ICU families will reverberate for years and likely result in high numbers of people needing trauma-related services” (p. 597). The scope of these impacts is difficult to fully appreciate.
It’s not only patients and their families who are negatively affected by visitor restrictions. Health-care staff have also reported difficulties arising from them (Azoulay et al., 2020). These difficulties range from trying to understand ever-evolving policies to ethical distress in end-of-life care. Health-care professionals have expressed regret and unease at being placeholders for the family during a patient’s last moments (Najeeb, 2020). The final moments of a patient’s life are deeply personal and intimate.
Families often have a strong desire to be present during this time, to say their final goodbyes, share private thoughts, and offer a comforting touch. These small acts, such as holding a hand or brushing a cheek, take on a profound significance when it is clear that family members will not have another chance to do so. These sacred moments don’t travel well through a screen. Zoom is simply not a replacement for the presence of family with the patient. Despite nurses’ best efforts to fill the void left by absent family members, the gap is impossible to bridge completely, which can leave them feeling inadequate and distressed.
Barriers to visitation
The undeniable cost of closing health-care doors to families during the pandemic highlighted the need for a critical examination of the decisions that were made, and continue to be made, regarding hospital visitation policies. Early on, the risk of transmitting this novel virus seemed to outweigh any possible benefit that visitors could provide. Safety understandably took precedence. and hospitals and care homes closed their doors. However, locking down LTC facilities tragically failed to prevent the widespread transmission of the virus through these vulnerable populations.
Past research in this area revealed that the main sources of infection acquired in hospitals are not visitors (Bishop & Walker, 2013; Fumagalli et al., 2006) but health-care providers who fail to follow established infection control procedures, such as handwashing and other guidelines (Dokken et al., 2021).
But would an airborne virus such as COVID be different? Would families present an unacceptable risk of infection transmission in hospitals? New research indicates that family presence in hospitals and LTC facilities is not associated with an increased spread of COVID-19 (Verbeek et al., 2020). “At present, there is limited evidence to support visitors having an important role in the hospital-related transmission of COVID-19” (Munshi, Evans, & Razak, 2021).
After more than three years of COVID-19, it is clear that society will probably never be free of this virus. New ways must be learned to adapt to this threat. Looking to the future, it is important not to forget the hard-won battles of patient family advocacy that were learned before the pandemic. Families bring great value to the health-care setting and must be viewed for who they are: vital health-care partners.
Your role in advocacy
There are many things you can do to advocate for change that will benefit patients:
- Educate yourself on the role that families play in patient outcomes. A lot of research on this topic is freely available online. Foundations such as Healthcare Excellence Canada also have educational resources available for health-care professionals.
- Educate yourself on the harms of isolation and separation. The Institute for Patient- and Family-Centered Care has many informative articles available on this topic.
- Engage in dialogue with hospital administrators, managers and other policy-makers.
- Involve families in advocacy by asking for their feedback and engaging in their unique perspectives. Laura Braun pointed this out powerfully in her Canadian Nurse article from September 21, 2020.
- Collaborate with your colleagues to discuss and develop additional advocacy strategies.
As health-care providers, nurses have always been advocates for their patients. Moving forward into a post-pandemic world, it is essential that the inclusion of families is prioritized to the greatest extent it can safely be. Families are not merely visitors but are integral to the care and recovery of each patient. By recognizing and addressing the challenges of closed visitation policies and advocating for a more compassionate and ethical approach to family presence, nurses can support patients and their loved ones during the most vulnerable moments in their lives.
Abbasi, J. (2020). Social isolation—The other COVID-19 threat in nursing homes. JAMA, 324(7), 619–620. doi:10.1001/jama.2020.13484
Azoulay, E., Cariou, A., Bruneel, F., Demoule, A., Kouatchet, A., Reuter, D., ... & Kentish-Barnes, N. (2020). Symptoms of anxiety, depression, and peritraumatic dissociation in critical care clinicians managing patients with COVID-19. A cross-sectional study. American Journal of Respiratory and Critical Care Medicine, 202(10), 1388–1398. doi:10.1164/rccm.202006-2568OC
Bishop, S. M., Walker, M. D., & Spivak, M. (2013). Family presence in the adult burn intensive care unit during dressing changes. Critical Care Nurse, 33(1), 14-24. https://doi.org/10.4037/ ccn2013116
Davidson, J. E., Aslakson, R. A., Long, A. C., Puntillo, K. A., Kross, E. K., Hart, J., . . . Curtis, J. R. (2017). Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Critical Care Medicine, 45(1), 103–128. doi:10.1097/ CCM.0000000000002169
Dokken, D. L., Johnson, B. H., & Markwell, H. J. (2021). Family presence during a pandemic: Guidance for decision-making. Institute for Patient- and Family-Centered Care. Retrieved from https://www.ipfcc.org/bestpractices/covid-19/IPFCC_Family_Presence.pdf
Favaro, A., St. Philip, E., & Jones, A. M. (2020, November 19). Facing another retirement home lockdown, 90-year-old chooses medically assisted death. CTV News. Retrieved from https://www.ctvnews.ca/health/facing-another-retirement-home-lockdown-90-year-old-chooses-medically-assisted-death-1.5197140?cache=mgxrihoykb%3Fot%3DAjaxLayout
Fumagalli, S., Boncinelli, L., Lo Nostro, A., Valoti, P., Baldereschi, G., Di Bari, M., Ungar, A., Baldasseroni, S., Geppetti, P., Masotti, G., Pini, R., & Marchionni, N. (2006). Reduced cardiocirculatory complications with unrestricted visiting policy in an intensive care unit: Results from a pilot, randomized trial. Circulation, 113, 946-952. https://doi.org/10.1161/ CIRCULATIONAHA.105.572537
Montauk, T. R., & Kuhl, E. A. (2020). COVID-related family separation and trauma in the intensive care unit. Trauma Psychology, 12(S1), S96–S97. doi:10.1037/tra0000839
Munshi, L., Evans, G., & Razak, F. (2021). The case for relaxing no-visitor policies in hospitals during the ongoing COVID-19 pandemic. CMAJ, 193(4), E135–E137. doi:10.1503/cmaj.202636
Najeeb, U. (2020, July 3). COVID-19, reflections: Phone call [blog]. CMAJ. Retrieved from https://cmajblogs.com/phone-call/
Silvera, G. A., Wolf, J. A., Stanowski, A., & Studer, Q. (2021). The influence of COVID-19 visitation restrictions on patient experience and safety outcomes: A critical role for subjective advocates. Patient Experience Journal, 8(1), 30–39.
Verbeek, H., Gerritsen, D. L., Backhaus, R., de Boer, B. S., Koopmans, R. T. C. M., & Hamers, J. P. H. (2020). Allowing visitors back in the nursing home during the COVID-19 crisis: A Dutch national study into first experiences and impact on well-being. Journal of the American Medical Directors Association, 21(7), 900–904. doi:10.1016/j.jamda.2020.06.020
Yanes, N. (2021, December 23). ‘Saving them to death’: Legislation filed to prevent isolation in nursing homes amid lockdowns. Click Orlando. Retrieved from https://www.clickorlando.com/news/local/2021/12/23/saving-them-to-death-legislation-filed-to-prevent-isolation-in-nursing-homes-amid-lockdowns/
Laura-Lee Nuttall, RN, BN, is a critical care nurse with 19 years of experience. She worked in a respiratory ICU in Ontario during the COVID-19 pandemic.