Don’t exclude an essential part of the care team

Sylvie Lemay recommends using risk mitigation strategies in order to include family members and essential support persons as partners in care in assisted living or long term care settings during the pandemic.

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It is an issue presently in the limelight. Mainstream and social media abound with heartbreaking stories. Families (defined broadly) are unable to visit or touch their children in assisted living facilities. Families are unable to help feed or care for their significant other or parent. Only one person is allowed to visit briefly but masked and at a distance, unable to touch their non-verbal family member. Patients are admitted to hospital with a diagnosis of starvation. Residents in long term care are wishing they were dead, or crying with loneliness.

How do we respect the rights of patients and residents to have access to their essential support networks? How do we respect the role of essential support persons as partners in providing care? These rights and roles conflict with current public health regulations that seek to limit people who are not staff in institutions.  

Clearly the current approach in Ontario to long term care visitor policies is not working to keep patients and residents safe or healthy. Many organisations such as the Registered Nurses’ Association of Ontario and the National Institute on Ageing have made recommendations to improve the situation. The World Health Organization defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” But public health regulations during the pandemic often prevent patients and residents from achieving the full definition of health.  

Photo Credit: Pxfuel. Image Description: An older adult looking out of a window alone.

Hospital and long term care staff are not able to fully meet all the health needs of their charges. Their priority is on curing or managing disease processes that have brought the person to their institution in the first place. That is already a big job. Public health’s goal is to minimize the risks to all of becoming sick with COVID-19. This is a good and important goal. It makes sense to restrict unnecessary visitors in hospitals or long term care. But the definitions of “necessary” and “unnecessary” should be guided by efforts to realize the full sense of “health” as laid out by the WHO.  

I think of my dad who died two years ago. In his dementia his only point of true well-being was my mom. He didn’t know who she was exactly, but he lit up whenever she arrived and held his hand. Without her, he appeared catatonic. I would argue that for my dad to be in the healthiest state possible despite his advanced dementia, the presence of my mom was necessary. She increased his sense of social well-being but also caught medication errors, helped with feeding, gave new staff information about who he was and his capabilities – because he retained some of his capabilities. She also advocated for him since he could not advocate for himself. She was a full partner in his care.

Currently we see many rules and regulations that limit essential support persons. This is done to decrease the risk of transmission of COVID-19. Yet, we allow other members of the care team to access patients whose care focus is on the patient’s disease, ignoring the importance of the other elements in the definition of health. We know that isolation is associated with poor mental and physical health and we ignore the myriad of other tasks taken on by a patient’s essential support persons. In some hospitals the “essential support person” is limited to one person, causing a task often shared by several people to be shouldered by only one, which leads to another type of inequity. Women inevitably shoulder this type of burden leading to greater gender inequality.

We do not have a mechanism to completely eliminate the risk of COVID-19. We can however mitigate risk. We ask staff to use personal protective equipment, and follow infection prevention rules such as hand sanitizing and masking, which permits them to provide care and be physically close to patients and each other. We could very easily train essential family and essential support partners to do the same. In fact, there are other contexts where we have done this successfully. For example in pediatric hospitals, parents are seen as partners in infection control and are given instructions in infection control.

As a society we need to rethink the burden of isolation that has been imposed on patients and residents. Patient and family engagement models see family and patients as co-partners in care. Pre-pandemic, the Ontario government in The Patient Declaration of Values for Ontario  (2019) declared that patients as well as “families and caregivers be treated with respect and seen as valuable contributors to the care team”. The pandemic does not change the need for this partnership but modulates how this partnership works in providing care for patients and residents. It is time to acknowledge this and revise policy to include all care partners in all settings in a meaningful and thoughtful way.

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Sylvie Lemay is a registered midwife and a graduate student in the Master of Bioethics program at the University of Toronto Joint Centre for Bioethics. @sblemay