One of the first questions I was asked by the Commons Health Committee was about personal resonsibility: “Shouldn’t people take more responsibility for their health?”
It is a dumb rhetorical question like, “shouldn’t we improve standards of care for people with diabetes?”
Clearly people should take more responsibility for their health, but considering the burden of illness falls disproportionately on the least autonomous (least educated/ wealthy/ powerful/ empowered/ able/ most old/ young) the burden of responsibility then is on those least capable of exercising it. Sir Michael Marmot’s book, Status Syndrome is a clear, succinct, accessible, evidence-based explanation of this phenomenon. The evidence base is vital in what is usually a hammer and tongs ding-dong between left and right.
The problem is that the conversation rarely moves on to the thorny question of how to make people take more responsibility. I criticised the ex-chair of the Royal College of General Practitioners and Future Forum ‘listener in chief’ Steve Field on this point a few months ago.
Sam has been my patient for the last 3 years. He has type 1 diabetes. Type 1 diabetes usually starts between childhood and early adulthood and accounts for between 5 and 15% of diabetes. The other is type 2 diabetes which starts later in life and can usually be managed in the early stages with diet and tablets. Control of type 1 diabetes requires insulin from the onset. For many people the diagnosis occurs just as they are beginning to discover their independence. Type 1 diabetes brings a catastrophic end to your independence. Suddenly you are struck with a condition that ties you down to regular meals, calorie counting, insulin injections 4 times a day and blood glucose testing, blood pressure and cholesterol tablets and regular check ups for your eyes, your feet and your kidneys, and blood tests … for the rest of your life. From independence to dependency overnight.
Poorly managed diabetes results in high blood glucose levels because there is insufficient insulin to transfer glucose from the bloodstream to the cells in the body where it is needed as fuel. Glucose is toxic to the lining of the blood vessels, especially the most delicate ones and so diabetic complications involve your eyes, kidneys, heart and extremities, especially your feet. Poor control results in blindness, kidney failure, heart disease, and painful nerve and circulation related damage to your feet, which in severe cases requires amputation. If the blood glucose is controlled you can avoid all of these complications. The higher the glucose levels the quicker the complications arise. I have seen all of these complications in a significant number of my type 1 and 2 diabetic patients far more often than I would like to.
The first time I met Sam he was a healthy looking 27 year old. Our practice nurse asked me to see him because his HbA1C blood test (the most important blood test for diabetic control) was 13.8. Good control is 6-7.5, fair control is 7.5-8.
13.8 is ‘terrible’. It heralds an impending series of catastrophes. Sam denied symptoms of excessive thirst, tiredness, weight loss or passing urine excessively. They are the classic presenting symptoms of diabetes before it is controlled. Sam said he felt fine. I could not tell if he was telling the truth or not. But I was surprised that he said he felt OK. Unlike the symptoms of diabetes, the complications develop over years and are have few symptoms of their own until they are advanced and mostly irreversible. Up to half of people with type 2 diabetes have evidence of complications at the time of diagnosis. That is why good control and regular monitoring are essential.
Looking back through Sam’s results I could see the control of his diabetes had been terrible since he was diagnosed 5 years before. A series of catastrophes were very likely. “Sam”, I implored and explained, “you know we can help you get control of this. You know that if we don’t you are going to go blind, your kidneys are going to fail, you’re going to have your legs amputated. You won’t live to your 50th birthday, you might not even make 40! It doesn’t have to be like that Sam, we can help you.”
There are a number of approaches in these situations. The “you are going to die young and horribly” approach, my experienced colleagues told me later, is usually only used once. Any more than that and the patients tend to stop coming back and they rarely change their behaviour. Sam knew about the risks. He had been thoroughly ‘educated’. More threats of horrendous complications and dying young were not going to make him ‘take responsibility’. Instead they add to feelings of guilt, depression, and self-loathing. I know that many of my patients with poorly controlled diabetes dread coming to their clinic appointments. They hate being judged on the basis of an HbA1C blood test, their cholesterol or the state of their feet, when their lives are so much more than that. They feel guilty about letting themselves and the nurses and doctors down. I have explored the sense of self-loathing that can be generated in aprevious post, Who is the NHS for? not me!
I tried other approaches. We discussed his insulin, were there any problems injecting, was he afraid of needles? No, none. And he demonstrated with no difficulty how he injected. How about side effects or low sugars (‘hypos’) which are horrible and cause a few of my patients run dangerously high sugars just avoid them. “No, no problems.”
Up to 50% of people with diabetes and other long term conditions are depressed. Depression causes people to neglect their health and I often see my patients’ diabetic control vary with their depressive symptoms. Sam was not forthcoming and it was difficult to find out much about how he felt. There are a lot of barriers between a doctor and a patient, even more between a white doctor and a young black man living in a Hoxton estate. I tried, but could not identify any signs of depression or other mental illness.
Sam had more education and better prospects than most of my patients. He was a teacher and responsible for a class of teenagers.
“What would you say to one of your students who developed diabetes, Sam?”
He shrugged his shoulders and responded exactly as one of his students might.
As hard as I tried I could not find out why a young, educated man with prospects might be prepared to die horribly and young when it was completely preventable. Clearly there are ‘things going on’ I don’t know about. If I am to help Sam we are going to have to get to know eachother.
Sam is not an exceptional case. I have seen my patients die ‘horribly and young’ from diabetes, alcoholic liver disease, smoking related lung disease, complications of surgery for obesity and infections due to injecting drugs. The price of ‘not taking individual responsiblity’ for these people was to die ‘horribly and young’.
Not taking responsibility is really complicated. There are reasons for it and they need to be understood. In yesterday’s Health Service Journal Mark Britnell, a former high-flyer in the Department of Health, now global head of health at KPMG, and recent appointee to David Cameron’s “kitchen cabinet” of health experts to advise on health service reform, proposed the NHS should take inspiration from Singapore, where healthcare is “anchored on the twin principles of individual responsibility and affordable health for all”.
I’ve responded on the HSJ website and Andy Cowper responded pithily on his HPI blog. Here are some details. Firstly Britnell compares apples and oranges. Singapore is a wealthy city state, culturally homogeneous and highly conservative. The UK is a heavily indepted country, culturally diverse, and politically liberal. Singapore had elections on May 7th this year and the People’s Action Party which has been in power since 1959 had its lowest ever majority due to a large extent to voter anger over high living costs and rising inequality. Healthcare costs play a significant role in causing this as explained in this very well written blog from Singaporemind. “The PAP government insists that Singaporeans shoulder as much of the burden for medical care as possible and they carried this idea to the extreme, making Singaporeans shoulder the highest % of medical expenses among citizens of developed countries, [even more than in the US]”. Cameron should be very wary about taking advice from someone who is advovating policy that is partly responsible for such unprecedented public discontent.
But more important than that is the right wing obsession with personal responsibility. Almost all the published evidence shows that the healthcare costs widen inequality and stop people accessing care they need. This paper, Medication Compliance, Adherence and Persistence: Current Status of Behavioral and Educational Interventions to Improve Outcomes gives an introduction. If people do not take responsibility and the threat of ‘dying horribly and young’ is not sufficient, then why do they insist that the threat of healthcare bills will improve behaviour?
I think there are 2 main reasons. The first is a medieval tendency to explain human behaviour in terms of moral values rather than complex social structures. According to this logic, ill health is on the whole a moral failing due to sloth, gluttony and so on, and if you get sick you deserve to pay for it yourself. It ignores the fact that the strongest determinants of ill health are genes and social deprivation. The second reason is their belief in idealised rational, self-interested consumers rather than complex, irrational, uncertain patients. This is the erroneous thinking that lead us to a global economic collapse. According to this logic people want to be healthy, and given sufficient freedom from a nannying state and a little nudge in the right direction will make healthy choices. This ignores the fact that a. people are not like that, and b. for a young diabetic it may be more important to assert your freedom and independence by eating what the hell you want, when you want, leaving your insulin at home and worrying about complications later.
What then are we to do?
In my experience, (11 years in General Practice) and that of my colleagues, some of whom have been doctors in the same surgery for over 25 years, if we are to help our patients who are suffering and at risk we need better continuity of care. We must try to understand our patients rather than judge them. We must remain accessible, so that they are not afraid to come back out of shame or fear of criticism or rejection. Above all we must be very patient. It can take a lifetime of practice for patients and doctors to understand eachother. By far the main part of our job as GPs is to look after our patients with long term conditions. Taking care of patients means getting to know them and sharing the burden of responsibility. It is profoundly different from a commercial relationship, founded on patient autonomy and choice. Sam’s diabetic complications – I met him 2 weeks ago, nearly blind, his diabetes control still catastrophic – are my burden and his. Other factors matter, diabetes control is far easier due to improvements in insulin pens and blood testing equipment, but in my experience, the biggest barrier to quailty of care is quality of relationships.
Shifting the burden of responsiblity onto individuals by taxing sickness is implicit in the ideology underpinning NHS reform. It flies in the face of clinical experience and all of the available evidence. What is more, it is more expensive than sharing the burden of care through general taxation.
It is morally repugnant.
For an excellent analysis of the difficulties caring for people with diabetes read, The Logic of Care: Health and the Problem of Patient Choice by Annmarie Mol.
Excellent 15min video about diabetes and individual responsibility. NB the 3rd most common reason for being removed from a US GP list is non-compliance with treatment (8mins)