Doctors who care for the dying face additional challenges amid the pandemic

The Star spoke to three palliative care doctors about their experiences caring for the sickest of patients as the pandemic enters its third year. With restrictions lifting in Ontario, the proof-of-vaccination system set to be eliminated on March 1, and the province mulling an end to indoor mask mandates, Premier Doug Ford said “everyone’s done with this” and ready for things to get back to normal. But because hospitalization and death rates lag behind daily COVID case counts, hospitals are still facing the pandemic head-on.

Those who work in palliative care fear the changes could leave the vulnerable behind.

“It’s been very morally distressing to hear the discourse around COVID go to a place where many people are talking about how our society should move on because those who are going to get [severe] COVID-19 are people who are elderly or people with other illnesses anyway,” said Dr. Naheed Dosani, the health equity lead at Kensington Health. “And that breaks my heart because these are the people I care for and they’re human beings and they deserve protection, support and compassion.”

As of Feb. 23, 1,106 people were in hospital in Ontario with COVID-19 — 319 of those in intensive care. In total, according to the province, 12,306 Ontario residents have died as a result of COVID since Jan. 15, 2020.

Lewin, site lead for palliative care at Toronto Western Hospital, estimates 40 per cent of the patients he cares for have COVID. Of that 40 per cent, “a very small percentage” came into hospital as a direct result of the virus. The rest caught COVID while in hospital for unrelated health conditions. For those who are in his care for pre-existing life-limiting illnesses, Lewin says COVID is often the “tipping point” that leads to them being in a critical situation.

Palliative care focuses on enhancing a patient’s quality of life, not a cure, for those with serious illness. But unlike hospice, which focuses specifically on end-of-life care, palliative patients can receive treatment in hopes of a cure alongside palliative care.

Dosani says the long-standing relationships he has with most of his patients means he can have open and honest conversations while they are facing critical illness as a result of COVID.

While the vaccine status of his patients varies, he is open with unvaccinated patients that they may not have been at the end of their lives if they were vaccinated.

Some patients, he says, express regret, sadness and frustration over being unvaccinated. For those who were vaccinated, their loved ones often blame themselves for not doing more to protect them. But very few say if they could go back, they still wouldn’t get vaccinated.

Dosani recounts one unvaccinated patient who at the end of her life told him she would not go back and get vaccinated if she could. Dosani says upholding patients’ end-of-life choices and goals, like the choice not to get vaccinated, is what palliative care is all about. But it is not easy.

“It’s heartbreaking to hear, especially when I’ve also seen that vaccines have saved so many lives and protected so many of my palliative care patients from further or worsening illness,” said Dosani.

The unvaccinated patient also told him how shocked and grateful she was that her medical team would treat her with such compassion, despite knowing her vaccination status.

“We put the people we care for at the centre and we provide compassion, even if it’s a choice that we wouldn’t have necessarily made ourselves. So, we wear N95s, we use rapid tests [and] we get triple vaccinated,” said Dosani. “We follow protocol to protect the people we care for so that they don’t get sick from COVID-19, even though they may have chosen not to get vaccinated to protect themselves.”

Dosani and Lewin both say the biggest challenge they’ve faced as palliative care doctors during the pandemic is the level of advocacy required to ensure patients have their loved ones with them during difficult moments, as well as the challenges of showing compassion behind a mask and at a distance.

They said while they are usually able to get someone into the hospital to be with critically ill patients, it is labour intensive and there are still regulations surrounding the number of visitors.

Dr. Samantha Winemaker, the medical co-lead at Hamilton Community Palliative Care Team, has been on both sides — as a clinician and a loved one. Winemaker’s father died due to unrelated health issues at the beginning of the pandemic after spending two weeks in the hospital.

“We felt very disconnected, very desperate, very helpless to have my dad there without us by his side,” said Winemaker.

She says she was left feeling traumatized, a familiar feeling for those grieving during the pandemic. There were no silver linings, no special smiles, whispered tearful goodbyes or hands held. “These are things that are seared into the minds of survivors and keep them going after the person is gone,” said Winemaker.

For her own patients, who she cares for in an outpatient setting, most wish to die at home. But as COVID-19 ravaged hospital resources, she says it may no longer be an option.

Dying is a chapter not a single moment, says Winemaker, and the level of care and assistance needed in the home varies. Most who spend the end of their lives at home require the assistance of a nurse at some point, but she says shortages mean she’s had to tell people it very well may not be possible to honour their wishes to stay home.

“We used to be able to link nurses to people in their homes within days of the request,” she said. Now, it’s upwards of a month.

“I feel like I don’t even recognize the care setting that I’ve been working in for 17 years,” said Winemaker.

Lewin says if someone had asked him at the start of the pandemic if he felt he could still get out of bed each morning to fight this daily battle two years on, he would have said no. But the pressures of the pandemic, he says, have also affirmed his personal mission to provide the best end-of-life care for those who need it.

“It can feel really rewarding to be on the front lines and it’s gruelling at the same time,” said Lewin.

He says that being a medical staffer in a pandemic sometimes feels like living in ‘Groundhog Day.’ But COVID-19 has also brought a renewed sense of calling.

“Everyone is trying their best to really help the entire system stay afloat and make sure people have [the best] quality of life as possible,” said Lewin. “That can feel hard two years into a pandemic, but it doesn’t mean we’re going to stop trying.”