A distinction between family caregivers and visitors aims to accommodate those who have and want a family caregiver, but not all residents do.
In Canada, long-term care residents have been deeply affected by the COVID-19 pandemic, leading to pleas for federal oversight and to provincial commitments to review the system. As Canadian society gradually reopens and attention turns to what can be done better in the future, we must reconsider visitor policies in long-term care homes. While there is still the threat of a COVID-19 outbreak, policy-makers will be motivated to maintain some restrictions; should they do so by identifying different types of visitors to long-term care, and varying the restrictions according to type?
The National Institute on Ageing (NIA) has released a guidance document to help policy-makers work through complex questions associated with resuming visits in long-term care homes. Among its “guiding principles and planning assumptions,” the document states that “policies must differentiate between ‘family caregivers’ and ‘general visitors.’” The former are defined as those who “can support feeding, mobility, personal hygiene, cognitive stimulation, communication, meaningful connection, relational continuity, and assistance in decision-making.” The document identifies those who are visiting “primarily for social reasons” as “general visitors.” The NIA’s distinction echoes appeals from concerned family members who have flooded social media with hashtags such as #notjustvisitors and #morethanavisitor.
Canada had 7.8 million caregivers in 2018; almost half of them were caring for their own or their spouse’s parents. The family caregiving relationship continues even if the person cared for moves into a long-term care home, and can carry on through to the end of life. There is no doubt that family caregivers are important to some long-term care residents; but what might the recommended distinction between “family caregiver” and “general visitor” mean for those residents who don’t want anybody in that role? Visitor policies must aim to accommodate the visits and visitors that each resident values, while recognizing that different residents can value different visitors for different reasons. A distinction between “family caregivers” and “general visitors” aims to accommodate those who have and want a family caregiver — but not all residents do.
The NIA guidance would provide people identified as “family caregivers” with more access to their loved ones than those identified as “general visitors.” Residents who identify someone as a “family caregiver” would be permitted to have visits in their room, with restrictions imposed only if their caregiver’s presence interferes with the care of others. General visitors, on the other hand, would be limited to 60 minutes per week and could visit in a resident’s room as a “last resort.” After satisfying certain conditions, family caregivers could be present during an outbreak; general visitors might be denied entry. “While socialization is certainly important,” the NIA report states, “family caregivers as partners in care should be prioritized to support resident health and wellbeing.”
I have learned in my work as a community ethicist that the values, opinions and beliefs of some long-term care residents would lead them to reject care from anyone other than those employed by the home.
The identification and prioritization suggested by the NIA obviously creates a hierarchy among long-term care visitors, but it also provides all residents equal access to visitors by stating that “residents, substitute decision makers and their families should have the authority and autonomy to determine who is essential to support them in their care.” (By contrast, a document released by the Registered Nurses Association of Ontario suggests that the long-term care home be included in determining who should be designated.) The NIA document also states that a person need not have had a “regular pattern of involvement” in order to be designated as a family caregiver, meaning that any resident (or decision-maker) who becomes aware of the option can designate anyone as a family caregiver and access the greater benefits that this visitor category allows.
I have learned in my work as a community ethicist that the values, opinions and beliefs of some long-term care residents would lead them to reject care from anyone other than those employed by the home. Some residents prefer to maintain a strictly professional relationship with those who provide their care and would resist any blending of social and caregiving relationships. Designating a visitor as a “caregiver” would be uncomfortable for some and might even be unacceptable for others. The designation could threaten their privacy, dignity or independence and might upset their role in their family or social relationships. In fact, some residents have chosen to live in long-term care in order to avoid the blending of caregiving and family relationships that the designation requires. For some residents I know, designating a loved one as a caregiver would come at the cost of their own sense of self and might exacerbate power imbalances with others in their lives.
The same values and beliefs will lead some family members to be uncomfortable with the “family caregiver” designation. The identifier puts the caregiver in a particular relationship with the person receiving care — and this relationship might be incompatible with the pre-existing relationship the visitor and the resident have had. About caregiving, I have heard a family member say, “He’s my dad. I just can’t do it.” There are also those family members who would gladly take on the role of family caregiver if they could, but they simply can’t (for example, a parent who is herself a long-term care resident, or an elderly spouse struggling with his own health concerns). Of course, these people could be offered the designation of “family caregiver” (as long as the resident or decision-maker agrees), but some would still be troubled by the role and would refuse it.
Residents and family members who have such beliefs are entitled to keep them. They do not need to change their understanding of what “caregiving” means, nor must we ask them to reconceptualize their relationships with others. But we must also recognize that these values and beliefs do not mean that visits with loved ones are not as valued or not as essential as they are to those who are comfortable with the designation of “family caregiver” and the relationship it implies.
The NIA document states, “Visitor policies should prioritize equity over equality and be both flexible and compassionate.” Prioritizing equity requires us to note that equal opportunity will get us only so far if the options available are acceptable only to some. So is another category required in order to distribute the benefits equitably? I’m not sure this is the best approach. Instead of carving out categories of visitors whom homes can exempt from strict visitor restrictions, I suggest we begin with the assumption that visitors — any visitors — ought to be restricted under only the very rarest of circumstances. We ought also to assume that most visitors to long-term care homes are never really just visitors; they are loved ones, spouses, companions, confidants, friends, siblings or other people whom the resident has the right to see. With assumptions such as these, restrictions of visitors to long-term care could become so rare that the categories would be unnecessary.
Perhaps the early days of the pandemic were rare circumstances of just the type that would justify a complete restriction of visitors to long-term care. I believe they probably were. As we brace for a second wave, and learn to live with COVID-19, I think our challenge is not to identify types of visitors and their relative restrictions; rather, we should be making sure long-term care homes can continue to be homes (which is the fundamental principle of Ontario’s Long Term Care Homes Act) even during this pandemic. Ensuring residents continue to have access to the people they value — no matter why they value them — is our challenge.
This article is part of the Facing up to Canada’s long-term care policy crisis special feature.
For related content, check out the IRPP’s Faces of Aging research program.