Wednesday, 5 December 2012
We need person-centred ethics in health care.
Ann Clwyd's experience of the shameful way she and her dying husband were treated in hospital should inform us that something awful has gone badly wrong with health care provision.
Occasionally in this blog I get personal. Choices affect us in different ways. Decisions have impact on persons and not an averaged statistic. I am an advocate of person-centred ethics because I believe that is the only way to build a framework for person-centred care. This is not mere emotion; it is simply a realisation that people have hopes, fears, anxieties, loves, hates, desires; that the impact of decisions on patients is contextual and circumstantial. They have families and loved ones who care too, and they have particular needs that arise as a result. Yet, these are increasingly lost in the dry calculus of the utilitarian ethics of health care policy. Even the consideration of duty has become driven by calculation rather than imperative (Kant would turn in his grave). Ends become a justification for means regardless of the true meaning of outcome for those who matter, the patient or those in care. Patients become numbers.
We are of course interested in numbers. We tend to set targets by them. Quality is more difficult to measure than quantity. Well-being more difficult than wealth. But we should always look beyond the bare statistic and consider how a policy decision impacts real people and not an average. I have no real idea what an 'average person' looks like. I doubt if an 'average person' exists. You might be 'average' in some calculations but not in many others. The impact of being 'average' in any particular score most often depends on circumstances that are not average; housing, family, relationships, work, stress, but also personality.
A health care system simply charged with obedience to numbers is one that is more likely than not to ignore the individual needs of patients. If patients become a ward statistic to turn around as quickly as possible then nurses will have less time for real patient care. No time for emotional engagement. No time to ensure a continuity of care or of carers; care becomes impersonal; a monetised ingredient. And certainly poor pay, inadequate or non-existent training and low esteem in the privatised care system has produced a cocktail for potential and actual abuse and harm where the needs of the patient take second place in the profit margin.
But there is another problem with statistics and ethics. It doesn't simply target the 'average'; it often seeks to target those outside the 'norm'. Health care policies often do this too. First identify a group at 'greater risk' then target them. This can be a good strategy but it comes with a distinct problem: how to target an at risk group and avoid stigmatizing that group. This is often the problem when considering genetic risk.
But sometimes targeting the highest risk group is just plain wrong. We might do a calculation that shows the burden per head of the highest risk group is twice the average. These are then targeted; their behaviour is put under scrutiny; the banner headlines of the press target them too. And we all agree we should do something about their behaviour. They are at fault this risk group for adding to the burden on the health services. We might even go so far as to say they shouldn't be treated unless they change their behaviour. They are a disgrace, unethical, a burden. But often they are not; or at least they are not the biggest burden at all. The biggest burden often lies with the greatest number whose risk may be smaller but whose overall aggregate burden to the health service is greater. Yes, I know, numbers do matter too.
A recent study has shown an increased risk of breast cancer among women who were thin as children. The study is one of many showing an increased risk of adult disease related to nutrition during growth and development in early life. This in turn relates to the nutrition of the mother during pregnancy and as young women.
The developmental origins of health and disease has become a major concern. Development of the embryo and fetus is affected by maternal nutrition and can determine the strategy for growth and metabolism of the fetus. This can have advantages in early life when the metabolism is mapped to the nutritional environment but may increase the risk of disease in adulthood. So nutrition during pregnancy has been linked to an increased risk of cardiovascular disease, obesity and diabetes in adult life.
One consequence of this knowledge is to shift the focus of public health strategies to the nutrition of young women and their lifestyles. This can have advantages, but it is not without problems or potential harm. Not least of these problems is how this change in focus is achieved. If we want to break the cycle of poverty and disease in the fight against malnutrition in young women, it requires much more than a public health strategy targeting an 'at risk' group. It requires a major change in global economic and social policies. It requires a broader strategy addressing the circumstances that lead or foster particular behaviours and choices.
Simply telling women that their diet can affect their children later in life, but without giving them the means to act on that information is unethical because it shifts the responsibility of the disease to the women without giving them the means to make a meaningful change. It also creates a new pathology, the pathology of risk. The risk, rather than being viewed as a factor among many is now considered as the underlying cause of the disease. And strategy turns to fixing that which is not yet broken; and in so doing may stigmatize particular groups of women.