Too little too late: Lisa's story
The evidence shows us undeniably that poverty and inequality are quite literally killing us. But it's the human stories between the data points that fuels this movement.
Dr. Ryan Meili
I’ve had the opportunity to work and to learn in Brazil, India, Mozambique, and the Philippines, all over rural Saskatchewan, including with Indigenous communities in the North, and in my practice at the West Side Community Clinic in inner-city Saskatoon.
I consider myself extremely fortunate to have visited and connected with these communities. I’ve learned to speak new languages, participated in festivals and traditional ceremonies, and found myself welcomed into people’s homes. I’ve shared in lives that were extremely different from my own and have shared some of my life as well. People have generously told me their stories, and I’ve done my best to learn from them and, where I could, to help them be healthier and happier.
This work has taken me to remarkable places – places I didn’t even know I wanted to visit. But sometimes it leads to places I’d never have wanted to be. One such experience stands out in my mind. I have a clear mental image of standing in a cemetery on a reserve in northern Saskatchewan, watching a family I knew well bury their daughter, Lisa, a twenty-five-year-old mother of two. I got to know Lisa and her family during the three years I was her doctor.
She had a great sense of humour and made strong connections with everyone on the health care team, though she was sometimes very challenging to work with. Lisa isn’t her real name, of course, but she knew that I shared her story. She used to tell people, “Meili’s writing a book about me.” Most of my patients just call me Meili. They’re a friendly, if not overly formal, bunch.
The first time I met Lisa, she came to see me at the clinic in Saskatoon about pain in her back. Two years earlier, she had been struck by a car, which had fractured her pelvis. The subsequent surgery had been successful, but one of the screws that pinned her hip in place had worked itself partway loose. I could feel a piece of hardware sticking out of her back. And so could she; it was a source of constant, unrelenting discomfort.
That same day, I got in touch with the orthopaedic surgeon who had done the original repair to see if it could be fixed. In the meantime, I prescribed something for Lisa’s pain. Given its severity, and what she had received in the past, I opted for hydromorphone, or Dilaudid, a derivative of morphine. I gave her a prescription for a week’s worth and scheduled a return visit a week later so that I could see how her pain was, follow up with surgery, and find out more about her history and her health.
She came to see me the next week, not exactly when her appointment was, but she showed up. I asked her how things had gone with the medications I’d prescribed. She told me that it helped, but that she hadn’t used it as directed. Rather than taking it by mouth, she had injected it. This struck me as remarkable. Not the fact that she’d shot up and misused a prescription; that happens all the time. No matter how careful you are – and my colleagues and I are extremely cautious – some patients will sell or abuse their medications.
What amazed me was that she brought it up. I didn’t spy track marks on her arms or grill her about her use. She just volunteered the information. I have always taken this as a sign of someone who, for all her difficulties, at the heart of it all, wanted to get better, to be better.
Still, her admission put me in a tricky spot, one that doctors find themselves in quite frequently. Here was a patient with significant pain, clearly in need of treatment, but she was using her pain medication in a way that was too dangerous for me to ignore. So I didn’t ignore it, I tried something different. I gave her a prescription for a long-acting opioid, one that the pharmacist can provide daily and observe her taking. This may seem somewhat paternalistic, but it’s a regular part of working with people who have serious addictions. The temptation to divert or misuse drugs is so great that, at the very least, when first starting treatment, witnessed therapy is an essential tool for making sure what we prescribe goes to the right person in the right way. So that’s what we did for Lisa, and she continued to come to the clinic and get to know us better.
Unfortunately, one of the things we came to know was that Lisa had contracted HIV, likely from sharing needles when injecting drugs. She’d known she had hepatitis C for a while, but the HIV was a surprise and it sent her into something of a spiral. She started using more, working the street more, and connecting less with us. She was homeless, bouncing from one friend’s place to another. Her CD4 count – a measure of the strength of her immune system – dipped down to under a hundred. To fight off infections, it needs to be at least two hundred; most people without HIV have a level of about a thousand. She would show up in the clinic when she had pneumonia or another infection but would not come in regularly enough that we could consider starting her on anti-retroviral medications. We knew what to do medically to bring her HIV under control and help prevent these infections, but she had to take pills every day or it wouldn’t work.
This went on for a few months, and then something strange happened. One day she noticed a lump in her neck, so she went to the emergency room. A surgeon did a biopsy of the lump, cutting out a small piece and sending it to the lab for analysis. It turned out to be cancer but, oddly, a cancer that isn’t associated with HIV. It seemed, as the old saying goes, if Lisa didn’t have bad luck she’d have no luck at all. All of the trouble growing up, getting hit by a car, hepatitis C and HIV, and now this.
Strangely enough, however, this cancer may have been one of the best things that happened to her. Somehow, it scared her in a way that HIV did not, maybe because cancer was something she knew she should fear. HIV had become so common in our neighbourhood, where the yearly rate of new cases has been as much as triple the national average, that everyone knew someone living with the disease. Everyone also knew someone who had died from AIDS, as we have very high rates of morbidity and mortality from the illness. In other parts of the country, less than five per cent of people who have HIV die of AIDS. In Saskatoon at the time, it was over eighty per cent. Still, for some reason getting HIV wasn’t the shock to Lisa that you’d expect. It was so common that it was normalized. It still upset her, but it didn’t drive her to make change. Cancer did. She swore she would fight it, and she did.
That was by no means a straightforward fight. She had to start on her anti-retrovirals to get the HIV well enough controlled that she could handle the further weakening of her immune system from chemotherapy. This wasn’t easy, as she continued to struggle with drugs. She got kicked out of the hospital half a dozen times for using. She would disappear just before a key appointment, putting her treatment back by weeks. But she kept coming back, and the team of outreach workers and doctors and nurses kept fighting, advocating for her to have one more chance after one more chance. And, to our great surprise, it worked. She took her meds, got her HIV under control, and managed to complete her chemotherapy. She also connected with her family, seeing her children and her parents more than she had in years. She even moved out of the neighbourhood, getting into supportive housing and away from the worst temptations.
She still slipped once in a while, but it really seemed that she’d turned a corner. She was happier and more together than we’d ever seen her. Then something happened, and no one really knows exactly what. She just started to go downhill. Her cancer was gone and her HIV was well controlled, but she kept losing weight. She wound up in the hospital again, looking weaker than she ever had. The team of doctors ran all kinds of tests but couldn’t find what was wrong. It was as if the weight of her misfortunes had become too great to bear. She was transferred to a hospital nearer to where she’d grown up and, one day a week or two later, just stopped breathing.
Lisa’s story can seem very clinical, full of references to medications and lab tests, of new symptoms and efforts at treatment. But in reality, it’s not a clinical story at all: it’s a political story. Lisa wasn’t sick with HIV or cancer. She was sick with poverty, with a truncated education from becoming a mother too soon, with never having access to good food and never having had a safe place to stay. She was sick with the abuse she’d suffered as a girl and a young woman, and with the marginalization of First Nations people throughout Canadian history. She was sick with the intergenerational effects of residential schools, with having parents who didn’t know how to be parents. She was sick with the addictions that emerged from the substances she used to dull the pain of all these deprivations and mistreatments.
We talk a lot about underserved populations in health care, the people who don’t have access to a family doctor or can’t see a specialist. Lisa wasn’t underserved in that way; she saw more doctors and nurses and support workers in the last two years of her life than most of us ever will or would want to. I’m sure there were times when that treatment wasn’t the best – I know she was sometimes dismissed or insulted because of who people thought she was – but she did get a lot of support from health care. The simple fact is that the real causes of her sickness could not be undone. Her life had been broken from the beginning, and all the doctors and hospitals, pharmacies and nurses in the world couldn’t change that.
We could point to bad choices, as is so often the reflex in stories like these. Certainly, Lisa didn’t always choose the healthiest path for herself. However, how much choice did she really have? Growing up where she did, in poverty and poor housing, in the family circumstances that she did, she had a limited ability to make good decisions, or even to know there were good decisions to be made. The story of her battle with the disease of poverty is indeed a story of bad choices, but those choices were made by bureaucrats in Regina and Ottawa, some long ago, some continuing today. Political decisions determine the distribution of wealth, of access to good food, of affordable housing, of just treatment. When we scrutinize what choices lead to poor health, we need to put these political decisions under the microscope.
Lisa’s is a tragic story, and like every tragedy, it is all her own. At the same time, like so many others in Canada, it is the story of people who have grown up in poverty, who have been excluded from society and opportunity. It is the story behind the statistics of health inequalities, of the real people whose lives are represented in early mortality and heightened disability.
We need to offer support to people whose lives are already in these circumstances, but much more importantly, we need to prevent them from winding up in such dire straits in the first place. If we are to improve the lives of people like Lisa – and there are so many like her – we need to think beyond health care. Spending our time treating the symptoms will get us nowhere because the underlying causes continue unimpeded. We’re back to treating the heart attack when we should have been treating the underlying diabetes.
If the causes of sickness are political, then the solutions must be political as well. To truly improve health outcomes, we must address the roots of sickness: unemployment, adverse childhood events, social isolation, homelessness, and food insecurity. In a word, if we want people to be healthy, we need to find a cure for the real disease. We need to find a cure for poverty.
Ryan Meili is the founder of Upstream.