‘You need not be alone anymore’: The doctor redefining palliative care
This article was written in partnership with Healthy Debate, and is part of a series of seven articles that explore the relationship between technology and compassion in the field of health care today, and especially during the COVID-19 pandemic.
Last April, in a long-term care home in Toronto devastated by a COVID-19 outbreak, 12 people had died and 89 residents had become infected in just over two weeks. So had 47 staff. Since so many staff were sick and quarantining, it was as if those remaining were “drowning,” says Russell Goldman, director of the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital. “All the staff available were stretching themselves as far as they could,” recalls Ramona Mahtani, leader of inpatient palliative care at Mount Sinai. “But it just wasn’t enough.”
Mahtani and Goldman were two of the physician leaders who helped manage the outbreak after Mount Sinai Hospital partnered with the long-term care home on April 15. The following day, Mahtani and Goldman helped arrange the evacuation of 15 residents to the hospital’s emergency department, where physicians and nurses could provide “the kind of intensive comfort care that these people needed,” says Don Melady, the leader of geriatric emergency medicine at Mount Sinai Hospital, who was working in the emergency department when residents arrived.
While the physicians and nurses tended to the patients, the palliative care team helped out – even though the residents did not require end-of-life palliative care, Mahtani says. Instead, the palliative care physicians did whatever their colleagues in the emergency department needed, such as assisting with alleviating symptoms and speaking with residents’ families.
The palliative care physicians were no longer on-call consultants or experts brought in only when it became clear that a patient was forgoing curative or life-prolonging medical treatment. They became a fixture of the emergency department. There was a longstanding view that palliative care should be more integrated into the emergency department, Melady says, but it took the chaos of COVID-19 to disrupt the institutional inertia that kept them apart. This “model might be a paradigm shift for how we deliver palliative care,” says Darren Cargill, a clinical co-lead for the Ontario Palliative Care Network. Mahtani and others, like a group of palliative care physicians in New York, have finally “been able to create a model of integrated palliative care.”
This collaboration was an early manifestation of an ongoing effort, spearheaded by Mahtani, to incorporate palliative care into previously siloed medical specializations throughout the pandemic. By advancing a broad, ambitious vision of palliative care’s purpose and scope, Mahtani and her team have helped change the daily operations of acute care within Mount Sinai Hospital. Because the pandemic has been such “an extraordinarily traumatic experience,” Mahtani says, “it just completely changed my perspective.”
Fundamentally, her approach to palliative care is about “being comfortable with navigating difficult conversations and suffering in the most ambiguous, complex situations,” she says. “It’s about loving each of your patients and their families. But probably most importantly, it’s about what you do for the teams you are integrating with – supporting them to thrive in their roles.”
Her unconventional, all-hands-on-deck conception of palliative care also led Mahtani’s team to integrate into the General Internal Medicine (GIM) unit, where her team accompanied the GIM physicians and nurses on their rounds. Later, when patients who were sick with COVID-19 surged into the GIM unit, the palliative care team partnered with GIM and the Intensive Care Unit (ICU) to manage a makeshift unit where patients could receive high-flow oxygen. While her team’s role was intentionally fluid, there were some constants: the palliative care physicians provided a regular, reassuring presence to isolated patients in a chaotic, nerve-wracking environment. Mahtani and her team were available around the clock. One night, Mahtani recounts, she told a nurse looking after a man ill with COVID-19 that she could call her at any time. In the middle of the night, Mahtani’s cell phone rang; upon showing up to the hospital, Mahtani saw that the man’s life was beyond saving. She helped the nurses make him comfortable as he drifted into death.
Palliative care is not just for patients who are dying, however, but for anyone who is very sick – and therefore, everyone hospitalized with COVID-19. During Ontario’s third wave, that meant Mahtani and her team cared for many young or pregnant patients, largely from disadvantaged socioeconomic backgrounds, who were overwhelming the ICU. The palliative care physicians found themselves working alongside obstetricians. There were pregnant patients sick with COVID-19 who had suffered stillbirths and others at risk of having one. When some of these patients regained consciousness, Mahtani and her colleagues told them that their babies had died, or that they had survived but were now between life and death in the ICU. The doctors broke the news of other family tragedies too, like the brother who had been hospitalized and the mother who had died as the more contagious, virulent variants caused entire households to fall ill. “The amount of trauma that was downloaded onto them is actually not comprehensible,” Mahtani says. Being by their side as they began to process how their lives had changed was crucial for their care, she says.
Mahtani and her team were not just helping patients and their families face these tragedies – they were also caring for the doctors and nurses alongside whom they were working. There were the physicians grappling with moral distress, or the anguish of watching a young person of colour who was forced to go into work die of a variant. The palliative care team was not providing formal counselling, but rather doing what it had been doing all along: offering support. “The distress, the beauty, the trauma: we’ll share it all with you,” Mahtani says. “You need not be alone anymore.”