Palliative care doctor bridges health-care worlds

Michael Anderson, a surgical oncology and community palliative care doctor and health researcher, is on a journey to bridge the worlds of Indigenous and Western health care to improve palliative care for Indigenous people.

Tell me about yourself and how you came to work as a palliative care physician.

I grew up in what I now realize is a common story. My dad is Mohawk, and my mother is of English-Canadian descent. I grew up knowing I was Mohawk, but not knowing what it was to be Mohawk because my family had learned to hide it because of residential schools and discrimination. My grandmother’s message was: “This is something you may not want people knowing because it doesn’t work out so well for you.”

I’m a Western-trained doctor and as a surgical oncologist, I saw lots of death in a very Westernized institutional setting, and I grew increasingly discontented with it. There was a real discomfort with how institutional death, especially in the health-care system, is framed. And I got this lovely gift – death was my opportunity to learn about what it is to be Mohawk.

Was there a specific moment that made you start focusing on palliative care?

I don’t know that there was one exact moment, but I remember a series of things. I remember being on call and getting a call from a colleague who had a patient with advanced lymphoma. He said, “Hey, can I get you to see this family?” I said, “Sure, what’s the surgical problem?” He says, “There’s no surgical problem. I’ve had real trouble having a conversation that the dad is dying. You are good at talking to people about death so could you go talk to them?” That was a moment when I realized how crappy a job we do at talking to people about death.

I watched some of my colleagues struggle with these conversations – and do it badly – and have families make terrible choices because the doctors were uncomfortable talking about death. Death is something we know happens but especially in medicine and oncology, death is almost treated as shameful and needs to be hidden and I really couldn’t reconcile that.

What do Indigenous knowledge systems teach about dying and death?

My journey of learning Indigenous culture and about death started with asking elders – Haudenosaunee, Anishnawbe, anyone I could talk to – I asked them, “What’s the word for death in your language?” And what struck me, everyone said the same thing, we don’t have a word for death. I remember one Mohawk elder said, “There is no word for death in Mohawk. The closest translation would be to wrap you in the flowers of Mother Earth.”

So, there were all these beautiful expressions. But death as a concept doesn’t exist in many Indigenous thought processes. It’s a transition. It’s like birth. Birth is your spirit entering this realm and death is your spirit leaving this realm. But the finality of it, that death is the end, doesn’t exist.

The second was, an elder who told me, “At the end of one’s life, your physical realm is often diminishing, you’re growing weaker, but that doesn’t mean you don’t have an opportunity to heal. The end of your life is an auspicious opportunity to heal your spirit.”

So, the Western doctor in me was taught that when people have a life-limiting illness, their big fears are symptoms like pain and shortness of breath. But it’s actually not. My experience and increasingly the literature shows that it’s existential stress, legacy. It’s things to do with your spirit. It’s not things that giving you morphine are going to address.

So, your physical realm may be diminishing but the chance to heal your spirit is really profound at the end. The next piece to the line, “The end of your life is an auspicious opportunity to heal your spirit” that the elder told me was, “And you heal your spirit through ceremony.” You don’t heal your spirit through morphine or a ventilator. You heal your spirit through ceremony.

Death was my opportunity to learn about what it is to be Mohawk.

My takeaway is that at the end of life in the medical sense you’re losing, you’re losing, you’re losing. In the Indigenous sense, you got opportunity, opportunity, opportunity. And it doesn’t matter whether you’ve been disconnected or connected to your culture, the same opportunity exists.

What is the need for culturally safe palliative care for Indigenous patients and care partners?

What I knew at the beginning of my journey is that I had spent a career witnessing racism in health care. I’m light-skinned enough that people don’t think to mind what they are saying around me. So, I saw it. I heard it.

The first time that I remember overtly thinking that everything my grandmother taught us was right was when I was a medical student. I sat there listening to doctors, who I really liked and were great mentors, say horrible things about this Oji-Cree family who had come down from a northern Ontario First Nation with a sick child. They didn’t know this family, they had never met them before, and were saying horrible, stereotypical things. I know that if I could feel it, the family could sure feel it. And I know it said to me, “Indigenous people aren’t treated so well in this system. I really should keep my head down. It is not good as a young doctor for people to know I’m Mohawk.” And as a resident in another city, I witnessed the same thing. And not a whole lot has changed.

So, in the early part of my medical training I stayed silent because I was junior and vulnerable. I am no longer junior, I do not feel vulnerable, and I do not stay silent now.

Can you share a story that exemplifies your palliative care work with Indigenous patients?

I saw this woman who was Indigenous, but she didn’t identify this way, and I saw her in a program for people experiencing homelessness. She had a palliative diagnosis and she got housing, not very much, but she got a roof over her head. She had nothing in this apartment but a hospital bed and an oxygen machine. But she had a feather sitting on a windowsill. She didn’t let it touch the ground. So, it sort of begged the question, “Why?”

Her story was that she was a First Nations woman who at a very young age of 6 or 7 years old, was taken from her family and put in the foster care system. She’d had a traumatic life full of abuse. She said, “A couple times I sat outside the Native Canadian Centre, I knew what it was, and I wanted to go in, but I never felt like I could.” Then she told me, “I sat in Moss Park, right across from Anishnawbe Health a lot of times and ate my lunch there. I wanted to walk in that door. I knew it was for First Nations people, but I never felt like I could.”

So, she was between worlds. And I related to that. I’m sitting there thinking, “I hear you.” So, the nurse that was with me, we called Anishnawbe Health and set up an appointment and the nurse actually walked her over a day later and got her through the door.

At her death, she had a smudge, she had the drum, she had people present. She had led her life completely separated from her culture and she wanted to cross that bridge but had no clue how to cross that bridge. And in the end of life, she got to do that.  

How is palliative care delivered in more remote Indigenous communities?

The distinction is a bit artificial. When I sit with people who have no real idea of what Indigenous people look like, they presume that Indigenous people live 800 kilometres north of Thunder Bay. The truth is that the majority of Indigenous people live in urban spaces. But there is tremendous mobility. People move in and out of the city.

I had a patient I was managing, and he lived in Toronto, but his home community was in southwestern Ontario. So, he would be there for a week or two and then back to Toronto. And I got uncomfortable as a Western doctor managing him remotely by phone and thinking, “I shouldn’t really be doing this. I need to be seeing you. You’re not really in my area. What am I doing?” But how else can I help him? He’s both in Toronto and then also going out to be with his family fishing and doing stuff that matters to him.

I think the distinction is a little artificial. There are different issues with remoteness and operational issues. But you can be five feet from the front door of Toronto General Hospital and if you can’t walk through that door, it might as well be 100 miles away. The boundaries of “Oh, you’re beyond this jurisdiction” are false boundaries, they don’t exist to our communities.

People come into the city from other areas of the province for specialized care. And during COVID when they would come in, many of the things that are normally available to them like Princess Margaret Lodge are unavailable. And people get into arguments about, “Well they came from your jurisdiction, so you pay for their accommodations.” And I give my colleague, Indigenous patient navigator Leonard Benoit, full credit because he negotiates with patient navigators in other districts and says, “Why don’t we split the cost because patients don’t care about these boundaries. They just want good care for their loved ones. So why don’t we both pay half?”

How has the pandemic impacted palliative care for Indigenous patients and care partners?

When we restrict it to only the person who is ill can go into palliative care, that is debilitating to all families and all people, but it is particularly debilitating to Indigenous people who already don’t trust institutions. So, now I’m asking you to go somewhere where you feel vulnerable and I’m telling you that you can’t bring your support system, not even one person with you.

A friend told me a story about a wife of a person who died who was calling the hospital saying, “Please, I need to do this, I need to bathe him. An Anishnawbe ritual is to do a cedar bath after death.” And they were saying, “Well, infection protocols won’t let you do this.” And she could not find a way to get anyone to understand it was crucially important to her healing and his healing. It ended up taking a kind health-care clinician to jump through a ridiculous number of hoops to make it happen. But there was no harm in that anywhere and the healing value was immense.

“There is no word for death in Mohawk. The closest translation would be to wrap you in the flowers of Mother Earth.”

A common institutional death ritual involves removing the deceased in a body-bag, leaving the building through a service entrance, and a hearse picks you up and takes you away to a funeral home. Many families don’t have an expectation or need other than that. But this was so important to this loved one and the health-care system didn’t value it. 

You said that ceremonies are important for end-of-life healing. What happened to ceremonies during the pandemic?

Some went virtual. I know of a virtual sharing circle after someone has died. I’m going to parrot a friend of mine, an Indigenous elder in the city. He says all the time, “Our biggest gift is our brain, thinking. The human gift is thought. We are not the fastest. We are not the biggest. But we have thought. One of the beauties of thought is we are adaptable.” So, we don’t stay the same. And, in fact, recently when looking at Indigenous knowledge, I took a quote from Mohawk elder, Tom Porter, and he talks about, “We are not rigid. If you’re rigid you become stiff, you become inflexible, arthritic. Our knowledge and ways of doing things are intentionally constantly adapting.” So, we change. I’ve seen a whole lot of elders on Zoom and that would not have happened (pre-pandemic).

How are you and the Indigenous communities you work with coping through the pandemic?

I think we’re no different than anyone else. We’re tired. There is a disclaimer that always has to be said, there is no one Indigenous community, it’s so profoundly diverse. But in my research world, I work with a couple of different Indigenous agencies and I’m watching them pivot and change. What I’m seeing is the real value of community in whatever form it takes. People are taking care of one another.

What drives you to do this work?

The space I find myself most interested in is harmonization. Because that’s my life. I have a Mohawk father and Canadian mother. I want to make the health-care system safer for Indigenous people. But I think the other side of it is true too, which is, especially around death and dying, I think Indigenous knowledge, not in an appropriating way, I think in a teaching way, can actually be good for a lot of non-Indigenous people to learn. The two world views can learn from each other, particularly when there is respect.

What do you want people to know about your work?

I’m on at times an uncomfortable and always inspirational journey. I’m learning. Having spent so much of my time trained in a Western health-care system, it’s easy for that way of thinking to dominate. It’s like cognitive imperialism because it’s big and embedded in everything. But I have some wonderful elders and community members who keep me grounded and remind me to be open to thinking about things differently because it opens up so many possibilities. When I was a teenager, I knew I was Mohawk but knew nothing about being Mohawk. My kids, at the same age, know their culture. So that to me is about reclaiming something. So instead of culture diminishing, I see a resurgence.