Navigating The Health Care Super-Highway:
The anxieties of a consumer-oriented hospital system
By Leela Rottman
On the eighth floor of a private hospital in Sydney, I nervously wait for an appointment with a Pulmonary Hypertension specialist. In my head, I go over a few questions that I want to ask. Transplant. Life expectancy. That new drug I heard about... What else? I really should have written a list, I'm thinking. I'm probably forgetting something really important. I think back to last year's disastrous appointment where my case history failed to make the necessary miles from Hobart to Sydney. My bemused family and I had to go over my lengthy medical history with the specialist during our twenty-minute appointment. Later, reading on a website how it is advisable for patients to take along photocopies of their medical history in-case of such mix-ups, I felt implicated; as if I had failed in a fundamental way at the complicated business of being sick. Looking out of the window, I see the tiny, far-away, bodies of people darting along the foot path below and hesitating before plunging across the nearby busy intersection. Up here, the atmosphere is hushed, with ferns, couches and magazines, but I'm feeling just as stressed as the people below appear. My health, my future, my life, are in what are surely my less-than-capable hands.
Unfortunately, feelings of anxiety about achieving health are not mine alone. My experiences with medical mix-ups and misinformation are mild compared with some of the horror stories I've read in Pulmonary Hypertension websites. In an increasingly privatised and deregulated hospital system, making sure that patients get the best medical care is left more and more to the individual. Achieving wellness is suddenly a personal project, involving commitment and skill. Personal responsibility for one's health is deeply engrained in many health systems in the Western world, and has impacted heavily on the delivery of health-care and on the experience of being ill.
Reid and Clark, in a 2002 study titled, The Active Citizen Works Hard: living with chronic heart failure, explore how the contemporary experience of sickness often involves anxiety and hard work. The patient is now thought of almost as part of 'the medical team', with as much influence over treatment options as the medical professionals (140). With this role comes onerous responsibility. This is evident in how Pulmonary Hypertension patients are encouraged to learn every page of their medical history and spend hours researching the condition on-line, mastering medical terminology in the process. Patients are instructed to be organised, well-researched, and know which drugs to enquire after, and which treatments to insist upon. The experience of having an illness is now not only physically taxing, but also mentally exhausting.
There are several reasons for the change in patient-doctor relations. A main one is overstretched and understaffed hospital systems. Specialists rarely have time to go over every detail of patients' conditions. Hospitals, those vast and often inefficient bureaucracies, seldom have medical histories when needed. To move through a sluggish and flawed system, to ensure they do not fall through the cracks, it is necessary for patients to take control, to become active pursuers of wellness. Another factor in the changed experience of being ill is a generalised distrust of authority. No longer is the patient-doctor relationship always one of trust and care, and nor is the doctor regarded as the ultimate store-house of medical wisdom. Sick people are encouraged to question, challenge and even dismiss doctors if the information they are given seems faulty (Reid and Clark; 141). Patients no longer regard doctors as the final word on their health and, in the current health system, nor can they safely do so.
However, rejecting a passive model of care has proved empowering for some patients. Rosalind Coward, in the introduction to her book, The Whole Truth: the myth of alternative health, describes how the idea of personal responsibility for one's health was born from a need for patients to challenge the previously unquestioned authority of the medical establishment (7). With social change in the Nineteen-Seventies came scepticism of many of the promises made by Medicine (8). She writes, "That particular image of the 'expert', the rational scientist who could diagnose through his high level of scientific knowledge, and in whom one had absolute trust, is gone (8)." Many patients benefit from greater agency triggered by this altered perception. Studying the particulars of their medical history gives some pulmonary hypertension sufferers a sense of control over their condition. Relating to their specialist as an equal can elevate self-esteem. And having photocopies of one's medical history is a big step forward from the days when histories were for doctors' eyes only and patients were often kept in the dark about their conditions. Patients encouraged to ask questions, to make waves, to shake up the system, often find that the process has hidden benefits.
The benefits for the empowered patient are only possible for those who have the necessary skills and plenty of stamina. A flaw in the so-called 'active patient' model is pointed out by Henderson and Petersen in the introduction to their book Consuming Health: the commodification of health care. They argue that the type of care one receives in the system depends on one's language abilities, education, socio-economic background, gender, and, importantly, the symptoms of one's condition (3). Pulmonary Hypertension sufferers know that negotiating the confusing world of specialists, insurance companies, welfare, and pharmaceutical benefits schemes requires assertiveness, education, dedication and energy. However, having an illness can severely compromise these qualities. For example, Pulmonary Hypertension sufferers often experience memory problems in relation to low levels of oxygen. This is hardly conducive to recalling complex medical details. In another example, a person on a low income may not have internet access and therefore will be unable to research their condition online; resulting in a lower level of knowledge than other patients. A system requiring ill people from a variety of social backgrounds to deploy a sustained level of agency creates an uneven playing field.
The idea of the 'active patient' is now intricately woven into the language of contemporary health care, with negative implications for patients. Henderson and Petersen explore how health is now referred to as an item that can be bought and sold (2). In increasingly privatised and deregulated markets, sick people, once referred to as 'patients' are now called 'clients' or even 'customers' (3). Henderson and Petersen cite this as problematic, writing, "Consumerism is often presented in terms of personal empowerment and freedom of choice. However, behind the rhetoric... lie compulsions surrounding the exercise of choice and an array of predefined and limited options for action (2-3)". While 'freedom' and 'choice' sound like positive concepts, a nail-biting anxiety often attends their realities. A consumer oriented, 'free-choice' approach to health care disregards patients' lack of medical training. The option to browse for wellness as if in a supermarket, or even purchase it online implies consumer power and fails to take into account the fact that power can only exist when consumers are fully and equally informed. Ultimately, health should not be a commodity over which one should feel anxious about making the right consumer choice. The steady creeping of consumerist language into the health system indicates deep structural flaws.
For me, being a pro-active, engaged, patient is something I aim for, but often fall short of. It is comforting to acknowledge, then, just how much effort is needed to sort out the complex information relating to Pulmonary Hypertension. The paradox of the contemporary health system is that the hard work of attaining wellness is rarely viable for those who are seriously ill. Understanding this, means a load of guilt can be spared if sometimes fatigue and a bad memory means patients can't be as dedicated as they would like. Ultimately, governments need to realise that a privatised and deregulated health market is not an ideal way to look after a population.
Here, in the specialist's waiting room, I look down at the traffic, and think how our health system can be as difficult to navigate as a busy, multi-lane, highway. The patient stands on the curb, nervously clutching the hands of their family members, peering into the traffic onslaught of specialists, treatment options, and drug trials. Snippits of conflicting information whizz past; like cyclists weaving and ducking around slower moving vehicles. True, that some of this traffic may rumble optimistically; offering hope for a better life. And the choices and information given may be enticing; like sleek, new, cars. But eventually, the patient and their family members feel weary. They feel dazzled and overwhelmed by the traffic; too new, to shiny, too many. All they wanted, after all, was to get to the other side of the road safely. Unfortunately, for many so-called 'health customers', this is an increasingly difficult goal.
Contributor: Leela Rottman
Leela Rottman is a writer and student attending university. She has ten years experience living with pulmonary hypertension which developed due to a congenital heart defect. Ms. Rottman loves books, music, hanging out with friends and exploring the nooks and crannies of her adopted city, Hobart, located in Southern Tasmania off the coast of Australia. Ms. Rottman has one other published work on PHCentral. We hope she becomes a regular owner to the site. You can read "Dark, Disturbing, but Deeply Insightful: Amy Silverstein's Heart Transplant Memoir, Sick Girl" HERE.
Rosalind Coward, The Whole Truth: the myth of alternative health, Faber and Faber Ltd; London; 1989; 1990
Saras Henderson and Alan Petersen, Introduction, Consuming Health: the commodification of health care, Routledge; London and New York, 2002
Margaret Reid and Alexander Clark, The Active Citizen Words Hard: living with chronic heart failure; Chapter 8, Consuming Health: the commodification of health care, Ed. Saras Hendersen and Alan Peterson, Routledge; London and New York; 2002
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