New guidelines should be compiled to allow for family support, and “relational rights” should replace individual rights. No one should die alone.

COVID-19 has forced us to question the very foundations of what keeps us safe and secure when our health or our lives are under threat. We’ve been slammed with harsh reminders of what is most important in life, and top of that list is family. Ironically, by enforcing blanket lockdown policies across health-care settings, family is what the virus has threatened directly. National institutions and think tanks have produced guidelines to support the integrity of families touched by health or dependency needs related to disability and ageing. Now is the time for turning those guidelines into national standards and policies.

Policy-makers, health-care professionals and researchers understandably crafted a first response to the viral threat based on an effort to balance interests of individuals and of society. But there are some who would argue that relational rights, in this case the right of patients to be with a family member (and family members to be with a loved one), should replace rights based on purely individual interests, especially at a time when we are collectively under threat.

In Canada, the right and the need to care for one another in families is central to what is at the very heart of civil society. But protecting the integrity of families is not a lens that governments are using to craft directives in response to COVID-19. It should be.

The Canadian Foundation for Healthcare Improvement (CFHI) is not alone in identifying the serious physical and psychological harm caused by isolating patients and residents from their families. Its Better Together Change Package is a roadmap for reintegrating essential family-care partners safely into health-care settings during the pandemic.

CFHI’s position is unequivocal: family presence is essential to affirming a patient- and family-centred philosophy of care. The comprehensive change strategy presented is on offer to long-term care and other congregate-care management teams, but it is not mandated.

The National Institute on Ageing at Ryerson University (NIA) proposes a Virtual Long-Term Care @Home Program, a strategy based on the fact that an overwhelming majority of older Ontarians prefer to age at home (which is understandable given the media reports of appalling conditions in LTC). Shifting resources to support care in the community puts the focus back on relationships and families. Mandating these recommended shifts in policy and practice of long-term care is not just the right thing to do, it’s also an issue of human rights.

Individual rights are based on the idea that we are autonomous creatures. But we are not. Humans are vulnerable and interdependent. We need and want to care for each other and if we don’t or can’t, we suffer great moral distress made unbearable by the knowledge that loved ones are suffering and possibly dying alone without the necessary solace of family presence.

Furthermore, many designated family-care partners of children and adults residing in health- or social-care settings are also substitute medical decision-makers. A pandemic coupled with serious pre-existing health challenges mean that lockdown situations separating vulnerable patients from their powers of attorney have both legal and human rights-based implications.

One thing is certain: if we value family in society today, the decisions made by our democratic institutions are not generating outcomes consistent with that value.

Canadian professor of law Jennifer Nedelsky asked in her seminal essay Reconceiving Rights as Relationship, “How do we move beyond ‘rights as limits to democratic outcomes’? We shift our focus from limits, barriers and boundaries to a dialogue of democratic accountability – which does not make the mistake of treating democracy as the sole value. We need a mechanism, an institutional process, of articulating basic values…which is itself consistent with democracy, and we need ways of continually asking whether our institutions of democratic decision-making are generating outcomes consistent with those values.”

One thing is certain: if we value family in society today, the decisions made by our democratic institutions are not generating outcomes consistent with that value.

Eva Kittay, philosopher and mother of an adult daughter with severe disabilities, offers a moral compass for embedding family values into long-term care policy-making. She asserts: “(In pre-pandemic times), the webs of dependence and interdependence that keep us alive fade into the background of our consciousness, permitting us the illusion of independence. They are as imperceptible as the musical scores that sustain the narrative of a film. But these webs are built and maintained by invisible workers. Like the infrastructure of the bridges, transit systems and highways, the infrastructure of care makes our lives go well or badly depending on its strength, not ours alone.”

Prime Minister Justin Trudeau has called for national standards in long-term care but no action on that front has been enacted. Pat Armstrong and Marcy Cohen writing for the Canadian Centre for Policy Alternatives have offered up a plan for Canada-wide standards that would bolster support for patients, families and communities. The foundational principles they propose put relationships at the centre of public policy planning, and they situate solutions in community- and neighbourhood-based delivery.

The harm inflicted on people with disabilities and residents in LTC during the pandemic cannot be addressed in isolation of their families because everyone in the family experiences that harm. The reality is that we are intrinsically all connected to each other’s well-being. The fact that those intrinsic connections in families and in the broader community have been under societal threat for some time makes the impacts of COVID even worse now than they may have been in a time when society recognized and valued those connections.

Family is the natural and fundamental group unit of society, but it is fragile and needs protection. We have the tools to create national standards for long-term care and a system of delivery that positions family and community at its heart. We just need the political will to enact those policies, and in doing so affirm our shared value of supporting our most vulnerable citizens without sacrificing the loving care of families.

Photo: Shutterstock.com, by Cryptographer