Should Ontario allow more family access to dying COVID victims?
On Sunday, night the former head of Doctors Without Borders, Dr. Joanne Liu, said something that stopped me in my tracks. The Quebec City-born doctor has said she read “The Plague” by Albert Camus as a teenager; she was inspired by the line a doctor says, amid the carnage: “I never got used to death.” She has seen plagues.
“When I was in West Africa, we made mistakes, just like anyone would anywhere,” said Liu in French, on the popular Québécois show “Tout le monde en parle.” “But the population forgave us for those mistakes.
“Except the one thing they never forgave was that we allowed people to die alone. What they never forgave was not allowing them to perform their rites when someone died.
“And I think once COVID is behind us in a couple of years, people won’t remember everything we did in terms of washing our hands, or masks. They will remember that they weren’t there when their mother died, and they’ll remember they couldn’t have a funeral. Man is not made to die alone.”
Liu then said once the long-term-care home disaster has stabilized, Quebec’s call for long-term-care home staff should include family members trained so they could be by a parent’s side, too. She said, “Everyone can learn how to put on personal protective equipment.” The prime minister agreed. On Tuesday, Quebec indeed announced that a designated caregiver will indeed be allowed into certain longterm-care homes, if the home is COVID-free and they respect infection protocols. And when a patient in palliative care is dying, family will be allowed to attend.
For non-COVID patients, some hospitals have allowed families to say goodbye in palliative care, fully masked and wearing PPE.
Some families choose video goodbyes, so that the person they love can see their face. The coronavirus and the experience of death may be an insoluble problem.
But Quebec’s move to grant more families access to their loved ones was striking, and maybe Ontario should follow.
Part of Quebec’s move is surely their dire situation; there has literally been a public call to staff long-term-care homes, and having a family member could help.
But Ontario has called in the military to help with long-term-care homes, too. According to Sinha, Quebec had 6,603 cases of the coronavirus across 273 homes as of April 30, and not counting staff; Ontario, as of May 4, had 6,815 cases in 289 homes, including staff. Assuming Quebec has continued to rise, they are likely ahead. But it is hard to say by how much.
Quebec is desperate, and Ontario could become desperate, too, and family access and the end-of-life experience are linked. Palliative visits have been limited and uncertain in Ontario, in this pandemic. Maybe, once we have things in better shape, family can be a part of care again, to the end.
“If you’re at the end of life you’re allowed to have a visitor, though in some hospitals they’re not allowing that person to be there right at the very end, but maybe more of a fixed time toward the end of life,” says Sinha. “I find that very difficult, personally. But I think every hospital is doing it differently.
“This (pandemic) has really disrupted how families can grieve, and how families can support their loved ones that are dying … the best that might look like is the person holding your hand wearing a mask and personal protective equipment.”
So maybe training families to don and doff PPE will help, some small amount. Maybe it’s too dangerous. Maybe, at the end of a life, the question isn’t easy.
“At the end of the day, everyone’s trying to do the right thing,” says Sinha. “But ultimately one of the biggest things we’re seeing is family members who are really worried about their loved ones in these settings, and the notion of your frail loved one dying alone in a home is something I think families will never be able to forgive themselves for.
“So at least in a catastrophe, or at least in a situation where we have some real homes that are struggling right now, if there’s one way we can alleviate suffering by allowing people to be with their loved ones at the end of their lives in a safe and dignified way, that might be a little solace we can at least give families and residents amid all the anguish as well.”
There are no easy answers in all this, no matter what we want. But I will think for a long time about what Dr. Liu said, and what inspired her. We should try to keep that humanity, in any safe way we can. Whatever happens, we should not get used to death.
Bruce Arthur is a Toronto-based columnist for the Star. Follow him on Twitter: @bruce_arthur