Not Just a Visitor: It's Time to Allow Essential Family Caregivers Back Into Long-Term Care Homes

By Vivian Stamatopoulos, PhD
Associate Teaching Professor, Ontario Tech University

May 5, 2020

On March 14, 2020 Ontario’s Chief Medical Officer of Health, Dr. David Williams, issued a memo asking all long-term care (LTC) homes to ban non-essential visitors in the hopes of quelling the “wildfire” raging through them (1). Only those family members with a resident who was ‘dying or very ill’ could be permitted entry. Importantly, Dr. Williams noted that the government would reevaluate this measure in the coming weeks.

That was seven weeks ago or 52 days, to be exact.

No such reevaluation has occurred and it has become painfully apparent that existing measures taken have failed to halt the viruses’ transmission. Indeed, reviewing provincial COVID-19 case summaries reveals a staggering 78 per cent of all COVID-19 deaths in Ontario are accounted for by LTC residents as of May 2, 2020. Banning family from LTC facilities may have been a well-intentioned response to uncertainty during an early pandemic phase but it needs to end and it needs to end now.

Family members are more than “non-essential” visitors. Such a categorization not only reflects the ongoing devaluation of the crucial role they play in resident care but further signifies a patent violation of residents' rights under the Long Term Care Homes Act (2007). To be clear, research has long demonstrated the powerful impact of family involvement in LTC, debunking the myth that families abandon their relatives in LTC homes to die in isolation. Active participation of family caregivers is widespread and has been shown to reduce staff burden (which recently prompted Premier Doug Ford to call in aid of the military to assist the five worst-hit homes) but also decreases resident mortality, infection and hospitalization (2).

Prolonged blanket family bans represent an additional ethical breach that produces painful and long-term harm for all affected. Franco A. Carnevale recently highlighted how such bans dangerously amplify resident vulnerability, creating a form of ethical abandonment that often leaves residents without any trusted representation and advocacy to ensure that their needs and rights are adequately respected (3). Families provide a crucial safeguard for residents, many of which have advanced cognitive decline, developmental disabilities and/or language barriers that restrict their ability to communicate their needs with on-site staff. What happens to such residents once access to their powers of attorney and/or key family care partners has been stripped?

Then there is the newly released research out of France showing that resident confinement is arguably more deleterious than COVID-19 itself (4). The “confinement disease” resulting from residents left alone in their rooms for 19 days led to mortality linked to hypovolemic shock and not from any acute respiratory distress (COVID-19). How many of LTC deaths in Canada over the past seven weeks result from the confinement disease? One must give serious pause to this.

Finally and deeply troubling, there is a growing concern that some facilities may actively defer to provincial directives, which can be overridden due to the ambiguity of the language, for fear of action taken against the home by family members observing violations to resident care. With staff-to-resident abuse in long-term homes up by 148 per cent from 2011 (5), it becomes clear this is not an unfounded concern. Numerous class-action lawsuits have taken aim against the ‘disgusting neglect’ amid Ontarian LTC homes over the years (6), with the most recent $50 million dollar suit targeting Revera Inc. for its alleged mishandling in relation to the coronavirus (7). Families have every right to be concerned with the abrupt lack of transparency into LTC homes as do residents who have suddenly lost an integral source of protection against potential abuses. Thus the “iron ring” of protection Premier Ford sought to place around nursing homes may actually serve to protect negligent homes by clouding them in an iron ring of secrecy.

It is time to heed the growing calls from residents, families, frontline physicians, experts and patient/caregiver advocates (8,9) that cite the immediate need to augment physical distancing measures to accommodate at least one key family stakeholder, who would also undergo the same risk transmission screening and follow the same personal protective equipment (PPE) protocols as existing staff. Frankly, we must stop viewing family members as solely risks to resident safety when in actuality, they may be the missing layer of support and protection these residents so desperately need right now.