Seeing Palliative Care through an Equity Lens

December 17, 2021

Reading time: 6 minutes

Council Award Recipient: Dr. Ramona Mahtani

During a period of so much chaos, when COVID-19 targeted the most vulnerable and raged through hospitals and nursing homes, Dr. Ramona Mahtani was a constant, reassuring presence. At the height of the pandemic, she worked tirelessly to alleviate patients’ symptoms, engage with their families and support other health-care providers.

“There is absolutely no doubt that her work changed lives,” said Jessica Bell, MPP for the riding of University Rosedale, where Dr. Mahtani’s hospital, Mount Sinai, is located.

At its meeting in December, CPSO Council recognized Dr. Mahtani’s extraordinary service with the presentation of its Council Award.

Dr. Mahtani is lead palliative care physician for the hospital-based program at Mount Sinai. In April 2020, during the first wave of the outbreak, she and other hospital physicians were sent as a lifeline to a neighbouring long-term care home devastated by an outbreak. During the first two weeks of the pandemic, 12 residents had died and 89 more had become infected. Creating further chaos, staff members were also falling ill. Forty-seven health-care providers became infected, leaving them unable to care for the residents who were not infected.

As co-lead physician supporting the long-term care home, Dr. Mahtani helped evacuate 15 residents to her hospital’s emergency department in the first 48 hours. At the hospital, she worked with a dedicated palliative care team to alleviate patients’ symptoms, and provide intensive comfort and support for both the patients and their families. Meanwhile, she was still doing virtual rounds on every single resident at the nursing home, often twice daily. In partnership with the home’s nursing leaders, Dr. Mahtani and her colleagues continued to evacuate residents to the hospital when more intense medical and palliative care was needed.

Ms. Bell says she was impressed by the phenomenal empathy and support that Dr. Mahtani provided to the staff at the long-term care home as she helped build their clinical capacity and skills, while setting the tone for this critical partnership. “She made herself available 24/7 to everyone at the long-term care home during the outbreak and beyond,” she said.

Her dedication to service was all the more impressive because both her parents were seriously ill, in two different hospitals across town.

During Ontario’s third wave, Dr. Mahtani and her team cared for many critically ill young or pregnant patients, largely from disadvantaged socioeconomic backgrounds. As COVID-19 cases surged, the Hospital for Sick Children, in collaboration with Mount Sinai, created a new ICU for these young adult patients and Dr. Mahtani crossed the street to care for these patients as well.

The experience of supporting so many racialized patients in multiple ICUs during the pandemic only reinforced Dr. Mahtani’s resolve to effect change. She is currently focusing her efforts on improving access to high quality palliative care for communities that experience poor care due to racial and ethnic marginalization. She says restoring human connection in care work is the building block needed to face the legitimate mistrust patients and families feel. She is committed to ensuring lessons learned during COVID-19 become part of future work and advocacy.

Below we speak to Dr. Mahtani. We also have a video of her remarks 🎥 when she accepted the award at the December meeting of Council at the end of the article.

Can you describe the role of palliative care in your team’s response to COVID-19?
We recognized the importance of our purpose — to care for the most vulnerable. For our team, the mechanism to achieve that care was intensive listening and understanding of their individual stories with the aim of alleviating suffering through honest connection and humility. Fundamental to our team’s response was amplification of support to frontline staff, in particular bedside nurses and allied health, as they, too, were juggling so many different demands on their lives due to systemic societal inequities. It was a messy, chaotic time that required me as a leader to come face-to-face with the hard truths about systemic biases.

Sinai also specifically recognized the role of palliative care leadership and clinical support during the pandemic. They saw us as specialists in caring during very complex, uncertain times. So, I know I’m very fortunate because many institutions did not make that connection.

Can you discuss the significance of viewing palliative care through an equity lens?
The ugly truth is that systemic biases exist even when people are dying. We have many studies now highlighting disparities in palliative care for racialized communities. But expansion of palliative care specialists and palliative care beds alone is not a solution. We need a major upgrade in our content and delivery if we are going to be accessible to diverse populations.

The initial step in this process is to name structural racism as a root cause of health inequities experienced by ethnic and racialized communities. Naming it upfront unburdens the responsibility of patients and families to navigate the worst time of their lives alone. Naming it allows us to show up differently — to be proactive rather than silent in our response.

How do you incorporate cultural sensitivity or cultural humility into this approach to care?
We know that each and every human wants high quality care for themselves and their loved ones — even though the components of that care may vary depending on their values. We should not be asking for patients and families to adapt to an accultured version of care. This process of acculturation is often hidden in policies and processes: “This family is not the right fit based on their customs,” “She has to be DNR to get PCU level care,” “He cannot be hydrated or tube fed to be referred to my palliative care program.”

I’m not minimizing the importance of having a vision for limited resources like PCU beds, but I am asking who are we serving with current palliative care criteria? Do patients and families need to erase themselves, cut the tethers to their cultural identity by giving up fundamental beliefs to receive palliative care at end of life?

In your personal history, you experienced racism. Can you describe your lived experience?
Yes. I experienced humiliating, oppressive racism as a young child in a British school in Asia and then the marginalizing, polite version when I immigrated here as a teenager.

What did that do to you?
I was a very tough kid growing up. Opinionated, loud, messy and confident. Over time, the message of “your clothes, your family, your food, your accent, your looks, your entire brand are not remotely cool” got to me. I went through some very dark teenage years.

In their understated way, my parents pulled me up by conveying their belief and trust in me.

Your life is so busy. When you do have the opportunity to relax, what do you do?
The most important lesson I’ve learned along the way is my inner voice needs to be trusted and honoured. There were times when I worked almost all the time during the pandemic, but I did so with a strong sense of purpose, not pressure. There were other times, when my three daughters returned to school, that I felt an urgency to be there every day at pick up, so I did that too. You can’t be everywhere at all times, but you can certainly remain one person with many purposeful roles — so you make choices and you accept them as yours.

Video from Council

Transcript

Video of Dr. Ramona Mahtani accepting her Council Award

Dr. Ramona Mahtani, palliative care physician from Toronto, Ontario, received the CPSO Council Award on December 9, 2021. Here are her acceptance remarks from the ceremony.

Wow, thank you very much for that very thoughtful introduction. To my nominators, including the most thoughtful Mount Sinai Executive and Senior Leadership Team to MPP Jessica Bell into the CPSO — I am truly honoured by this moment you have created for me. I hope through the collaborative visionary purpose we have at Sinai Health and the Temmy Latner Centre for Palliative Care, I am able to respectfully honour your time and efforts in this process by improving, with our team, the actual caring that happens in medicine. I share this award with my exceptional Palliative Care team at the Temmy Latner Centre for Palliative Care, and the most humane carers and healers I’ve ever known — the Frontline Nursing and Allied Health, who work at both Sinai Health Home Care and Long-Term Care. To the many thousands of patients and families who I’ve met on this journey, who have both survived and died in these years, allowing me into the of your hearts and souls paradoxically has helped me heal, through experiencing your love, your sense of community and your human endurance. I will do everything I can to honour all that you have lost by helping to rebuild a system of caring that not only considers you, but finally centers around you and your family values and needs.

I do you have a renewed, perhaps, obsessive optimism about the future though. In bearing witness to the anguish of the most vulnerable people and communities, I’ve also been exposed to the deepest forms of love, human connection and compassion. In the early days of the pandemic, my mother and father — and then father were both hospitalized in different hospitals than the one I work in. Simultaneously, their acute care, including their critical care journeys, lasted almost six months. Initially, my leaning to the work during the pandemic was my way of coping with a sense of helplessness.

Those who worked closely knew I literally walked around with my parents in my pockets, so I could be with them virtually while also doing the important relationship-based caring, that I felt so strongly about in the hospital. As I watched my parents slowly fade away through very strictly enforced “no visitor” policies initially, and then with what I call “distant caring”, I started to feel differently, in that I started to feel had a purpose in my work. I thought I had achieved my sector, I remained a strong role-model mom to my three daughters, I was the ultimate caregiver to my beloved parents, and I had a purpose in my job of caring for the most vulnerable at work.

This trifecta worked for me, of course, until it didn’t. I recall with hyperacuity of moments in late January 2021. I noticed early day that when I looked at the board in the ICU, the names were very different. I could feel the stories of those names. They were names that I grew up with in my community. My eyes darted around the Critical Care Unit, room-by-room in that moment until I realized it was my community. I felt my brothers, my sisters, uncles and aunties, were all in these rooms — critically Ill, some dying, all in their 30s to 60s. I actually couldn’t breathe. I knew I was having a panic attack in that moment, although I had never had one. I needed to get out of there. I needed to escape. Like many other mothers with service jobs, we all have a place we go for quiet. For many of us, there’s this single place that exists, and it is our cars. I found myself — I found myself there in the moments of disillusionment. I had actually driven myself to Little India on Gerrard Street, where my family business resides. My memories of bright lights and celebrations, now an eerily quiet street, only amplified my disillusionment in that moment. I could literally feel a gravitational pull downwards. I was really familiar with this force. I knew it very well during those very isolating years in my teens when I immigrated to Canada, when I felt invisible and unimportant.

This time though, I had some life experience and tools to get me out of this situation. Instead of choosing the short-term approach of pulling away and escaping, I pulled my people in. I started with a simple phone call to my original palliative care mentor and sponsor, Dr. Russell Goldman. I then turned to my colleague and friend Dr. Kavita Algu, and then to my Temmy Latner co-pilot doctor — sorry, my Long-Term Care co-pilot, Dr. Nathan Stall. In those conversations I remember asking the hard questions— “Did I go my whole life ignoring the obvious signs that we live constantly in oppression?” “Are my parents safe away from their families in a hospital?” “What do I say to my three girls to prepare them for the future?” I sat in that car on Gerrard Street for four hours, and every time I hung up the phone with one of my colleagues from Sinai, I immediately got a phone call from another — our hospital palliative care team, several physicians, including the leaders of the ICU, the Chief of Medicine.

I didn’t realize it then, but I knew it now — I know it now that that very first phone call I made, that I was leaning into the supports that I knew existed. It created the most organic, organized network of loving and peer support that everybody deserves. After four hours of this deliberate resuscitation of my soul, I returned to the ICU, walking every step differently, with more clarity, more purpose. While I had used words like “solidarity”, “collaboration”, “presence”, “non-abandonment” throughout the pandemic, I had new words in my purpose— Love — deep love, through human connection. Unconditional support of one another, so that we can endure in an infinitely challenging world. My network pulled me up, actually, quite forcibly, through endurance in uncomfortable conversations, through gift baskets, through flowers, through virtual “Women in Medicine Nights”, through team nominations, science-fiction novels and takeout dinner sitting on my porch at the end of the day. In that process of accepting their love, I helped them too, and I knew it and I felt it. We were going to heal, not as individuals, individual doctors or individual nurses, but as a community, through the deliberate practice of love and connection with one another. We were choosing humanism over escapism, connection over detachment and depersonalization. We were going to do all of this so that we could love and care authentically for the most vulnerable patients and families.

To end, I will share the words of my dear Nova, whose soul will forever bless me and our team. I heard you, you said, [Vietnamese phrase] — which in Vietnamese, is, “all doctors are gentle mothers, who deeply love in their caring and healing of all those who need it most”. Thank you.