The following is an excerpt from A Healthy Society: how a focus on health can revive Canadian democracy by Ryan Meili (Purich Publishing, 2012). For the next month I’ll be sharing an excerpt a day. To follow the daily excerpts, go to the Healthy Society facebook page or follow @ryanmeili on Twitter, or you can order a copy of the book here. You can also see all the previous excerpts here on tumblr.
The development of a society, rich or poor, can be judged by the quality of its population’s health, how fairly health is distributed across the social spectrum, and the degree of protection provided from disadvantage as a result of ill-health.
Commission on the Social Determinants of Health Closing the Gap in a Generation1
Buying Smokes for my Patients
Maxine just turned twenty, but walks like she’s ninety-one. I suppose that’s because she’s closer to death than most ninety-one-year olds. You’d walk slowly, too, if that’s what lay ahead. While she’s been on the street since she was thirteen, hooked on IV cocaine and morphine for nearly as long, she has only had HIV for two years, three at the most. For some reason she, like many of the growing number of people infected with HIV in Saskatoon, is a rapid progresser. This means that, rather than taking years for her infection to progress to the immune suppression of AIDS, it happened very quickly. There are a few theories out there: different genetic capacity to respond, unique strains of the virus, or just poor underlying health. The truth is, we don’t quite know why. What we do know is that she’s in really bad shape — what many doctors would call, in back rooms and unprofessional asides, a train wreck.
When I first met Maxine, she came in with florid thrush, a rip-roaring pneumonia, and a prescription for prophylactic antibiotics she never intended to fill. I instantly recalled the hospital in Mozambique where caring for young men and women who arrive emaciated and scared, fast approaching the end of their lives, is a daily occurrence. Maxine’s is the worst case of AIDS I’ve seen walking a Canadian street. I told her she was sick enough to go into the hospital, but she had just been discharged for the umpteenth time. She wouldn’t say much, just told me she wanted antibiotics and nutritional supplements. The last thing she wanted was to go back into the hospital.
Three months later, the word on the street is that Maxine wants help. She’s getting weaker and sicker, and finally recognizes she’s in trouble. She comes into the clinic and falls asleep on the exam table. She is deathly thin, and under my stethoscope her lungs sound like a rubber boot being pulled from the mud. I call the Infectious Disease service and Internal Medicine at Royal University Hospital. They know her well; she’s done this before. She gets sick enough to need some help, she is admitted, she gets a bit better, hates the hospital, misses the drugs, and bolts. Reluctantly, they agree to give her another try.
That was a Friday, and I was out of town for the weekend. When I arrive to see her on Monday morning the internal medicine team is about to discharge her. Her CD4 count, a measure of the immune cells that defend against infection, is four. It should be at least 400. The HIV viral load tells us how active the virus is in her system. More than 100,000 is considered too much; hers is three million. However, her pneumonia has improved, she’s not ready for the antiretroviral medications that must be taken every day without fail in order to avoid increasing resistance, and the normal functions of an acute ward have been reached. She doesn’t make it easy to help her, either. She swears at the nurses, refuses to take pills or have blood work. When the security guard assigned to keep her in line takes her for walks, she bums cigarettes, hides them in her gown and smokes them on the ward. She takes as much time and attention as the rest of the patients on her ward combined, and the nurses and medical staff are exasperated.
Despite her misbehaviour, she tells me she wants to stay. I visit twice a day, sitting on the edge of her bed and talking with her about the future. She says she wants to get on methadone and off the streets. She wants to take the antiretroviral medications to get her immune system working again. She is refusing to leave the hospital. The idea that, as health care providers, we might have security guards escort this young girl who is dying of AIDS to the street is against all we stand for.
So we don’t. After a long discussion with the medical team, we agree to try a little longer. Give her a week and see how she does. Because, despite the frustrations of bed shortages, extra workload, and chances that are cachectically slim, we know these are the moments that define us as a profession. Even when the odds are long, we cannot walk away from someone who is so clearly suffering. So we’ll try for another week. Get the methadone doc to see her, get psychiatry involved, and social work, and nutrition, and anyone else we can think of, make our boundaries clear and try once more.
We know the hospital is no place for Maxine. But the system has no better place. Most drug rehab programs won’t take people on methadone; none of them will take someone who needs to start it. The waiting list to get started can be several months and requires people with numerous social and economic barriers to jump through multiple hoops that seem designed to keep them out. So in the gap between wanting to kick the drugs and having the personal and social capacity to do so, they’re dumped back on the streets to start from scratch.
On the second or third night of this experiment in patience, I go up to see Maxine. The nurses are frustrated; she’s still sneaking smokes into her room. She constantly demands that security take her for walks. She fights meds and blood work. But she’s still there. She’s taking her methadone. She tells me again she wants to stay, she wants to get better. The nurses think that maybe if she had her own cigarettes they could help her set a schedule and stay out of trouble. Maybe if they print her off more of the crossword puzzles she likes she’ll stay busy. In many ways she is older than her twenty years. In others she’s truly a child.
The next morning I go in to see her. I’ve got a couple of books of crossword puzzles and a pack of Player’s Light. I never thought I’d buy a pack of smokes for a patient, but in this case “first do no harm” takes a back seat to the immediate fight for her life.
I go up to her room to deliver my gifts and talk to her some more. She’s gone. The night before she got frustrated, left the hospital, scored some drugs, shot up and showed up in emergency in bad shape. The line was crossed and she is not welcome in the hospital any more. She can come to see me at the clinic the next week — we’ll always see her — but the glimmer of hope is significantly dulled.
The last time I saw her, just before I stopped working at the clinic she trusts, she was repeatedly wearing out her welcome at the brief detox centre. I told her I hoped she’d at least come in and take her medications and see the other doctors there. She said goodbye, and thank you, and gave me a heartbreakingly innocent hug.
The cigarettes stayed in my freezer for a long time. I thought the next time I was invited to a sweat lodge ceremony, I’d bring them as my offering of tobacco and say a prayer for Maxine. It turned out I didn’t get the chance — at least not while she was still alive. A few weeks after I left the clinic to work in rural Saskatchewan, she was hit by a car, shattering her pelvis. While in hospital she contracted pneumonia again, and this time she couldn’t recover from it. She died just before her twenty-second birthday.
It’s easy to get distracted by the pathology of Maxine’s story, to think that it’s a story of viral invasion, of fractured bones and infected lungs. These physical details, however, are distractions from the real disease. They are symptoms of what Dr. Stu Skinner, a Saskatoon infectious disease physician who specializes in HIV, refers to as the “End Stage of Poverty.”
Maxine’s life was hard from the beginning. She grew up in an environment of poverty, dysfunction, and abuse. Her mother had spent most of her own childhood in a residential school; she hadn’t seen what it was like to be a parent and wasn’t very good at it. Maxine never knew her father. Instead, she knew the attentions of various boyfriends and extended family members who abused her physically, sexually, and emotionally throughout her childhood. She had a baby before she reached Grade 9 and never returned to finish high school. In many ways she never got a chance to be a child, and at the same time never matured to be an adult.
Such a broken life, such an inherently tragic existence, provokes serious questions about our society: questions about the prevention and treatment of disease, about poverty and services for vulnerable people, about education, and about justice. What often escapes our attention when considering the tragic story of one individual is how intimately it is connected to all of us, to the collective decision-making process that is electoral politics. It is politics that decides whether young women like Maxine live or die. Ultimately, our political choices are to blame for the large number of people who slip through the cracks.
There is strong evidence that our current political choices aren’t working for everyone. In Canada and around the world, the health of the poorest people is far worse than the health of the richest, and new evidence suggests we all suffer as a result. In order to address the fundamental unfairness of the situation, we need to rethink not just how we do health care, but how we make decisions as a society.
Economic growth and advances in health care have increased the life span, health status, and quality of life of people all over the world. Yet there are many people, in poorer countries and within wealthy nations, who do not experience the benefits of this progress. Canada is one of the wealthiest nations on the planet, but the gap between the rich and the poor is widening, and rates of child poverty and homelessness are on the rise. Despite Canada’s self-image as a welcoming and equal nation, Aboriginal peoples, immigrants, and women continue to suffer more illness than the rest of the population. The cost of post-secondary education has risen to levels that are unaffordable for many. Epidemics of drug abuse, diabetes, obesity, HIV/AIDS, and other diseases closely related to poverty result in lost lives and wounded communities. Meanwhile, human actions are harming the wider environment that supports us; this, in turn, harms humans. These problems are fundamentally political, but those who raise objections to the current state of affairs, who suggest that there must be a different way of organizing ourselves that will be to the benefit of all, are dismissed as naïve and ignorant of economic realities.
None of this is news. Most people are well aware of the situation, and many are moved to action. The overall response, however, is fragmented, confused, and ineffective. The question before us all is, how can we move beyond this impasse? How can we organize ourselves to make wise decisions for the benefit of all?
Politics and public discourse, the field that should be responding to such pressing societal concerns, flounders instead from crisis to crisis. Parties and public figures bounce around the political and social spectrum in reaction to events or public opinion. The key issues of the day are decided more by the news cycle than any rational understanding of priorities. Ideas are presented by extreme opposite views in debate rather than in a search for common ground. Political reporting is dominated by scandal to the exclusion of substance, and, as a result, we are unable to focus on real issues. The agenda of governments seems to be either hidden or absent. From day to day the top stories change from an international conflict to a far-off natural disaster, from the rising or falling loonie to a record lottery jackpot, with no discernible pattern of progress or failure. In this fragmented experience of history and the present, all of us have a hard time recognizing what is really happening, what a government has done, or what it ought to do.
The problem is not a failure to understand the extent of our difficulties; it is the lack of a focus, of an organizing principle for change. An undeclared objective will not be realized; we must state our goals clearly if we wish to succeed in reaching them. In the absence of a societal project that advances the wellbeing of all, it is only natural that different groups will use politics cynically for their own gains, and that people will find it difficult to decipher the mixed and ever-changing signals. Without clear common goals, we have increasing polarity and discord. If we are to make anything of this mess, we must find something we agree on and work toward it. We need a clear objective that will inspire people from diverse circumstances to work together for a greater good.
What I propose is that people have already chosen that focus. It is simply a matter of recognizing, understanding, articulating, and acting upon it. The focus is health: the health of individuals, the health of communities, the health of democratic institutions.
People care about health. It’s part of our assumed common ground, a truly shared value that transcends class, colour, and political ideology. Our conversations are replete with references to health. If you ask expectant parents if they’re having a boy or a girl, the answer is inevitably, “We don’t care, as long as it’s healthy.” When neighbours and friends are ill, we go out of our way to help them. If people fall on hard times, a common encouragement is, “At least you have your health.” We speak of healthy relationships, healthy attitudes, healthy economies, and healthy appetites. We toast one another’s health. These familiar expressions reflect our unconscious preoccupation with our common vulnerabilities, hopes, and fears: we know, deeply, that health — physical, mental, and social — is a necessary condition for the full enjoyment of life.
This focus on health is reflected in public life as well as private, particularly in the heated political debates around health care and health spending. Health care and health are very different things, but health care is the policy area most obviously linked to health, and the attention given to it is an identifiable surrogate for this deeper preoccupation. With rare exceptions, health care is the number one issue of importance in Canadian polling, an unusual constant in the tumultuous sea of public opinion. Accordingly, health care spending takes up the largest portion of provincial budgets. There have been many who have complained about this, saying that an inordinate focus on health takes away from other important areas such as education, justice, and infrastructure spending. In a way they’re right — our focus on health care at the expense of other important aspects of public life is disproportionate. But the problem is not that we care too much about health, it’s that we are doing so in an incomplete and reactive fashion. Our approach tends to be palliative rather than preventative; we focus too much on what to do when our health fails, not on how to make sure the conditions are in place for more people to thrive, to stay healthy. If we truly want a healthy society, we need to build a political movement with health as its focus.
1 Commission on the Social Determinants of Health, Closing the Gap in a Generation: Health equity through action on the social determinants of health. Final report of the Commission on the Social Determinants of Health (Geneva: World Health Organization, 2008), p. 3.