’They listen, but they don’t always think it’s something they need to take note of.’
These are the words of a woman dying from cancer – let’s call her Ann. She talked about receiving great personal care from compassionate, empathic health professionals who were able to see beyond her cancer. Staff who recognised the nature and breadth of her whole experience, providing practical help with the work of living and dying with cancer.1
But Ann also described how that recognition didn’t translate into personalised medical care – where decisions about her medical treatment were tailored to her personal circumstances. Medical decisions were instead based on disease-focused evidence of prognosis, benefit and risk.
Ann was expected to ‘fit’ the evidence; rather than becoming part of a beyond-protocol decision. She spoke of feeling ’trapped on a conveyor belt’ – caught in a depersonalised system of medical care which left her feeling upset, anxious and lacking control. We know a lot about the burden that illness can create for individuals. Ann spoke of an additional burden that came not from her illness, but from the services that were trying to help her.
Ann’s experience is not unique. Although specific experiences of treatment burden vary, all can be characterised as situations in which care adds to, rather than relieves, the burden of living with illness.
I worry that that too often GPs take a ‘command and control’ approach to disease, creating a burden for patients.
The burden of care includes the burden of illness ‘labelling’; telling people they are ‘sick’ because they have a ‘condition’ (such as pre-diabetes) that must be seen by doctors, or can only be fixed by medicine.
It also includes polypharmacy, which disrupts people’s daily lives by virtue of their side effects, the complexity of fitting them in to usual daily routines, and that their prescriptions mean that they must be seen regularly, for check-ups for example, and can only be monitored by a doctor.
The ‘burden’ includes burdening the patient by focusing on what the doctor thinks matters (e.g. diabetic control), and not what is bothering patients (e.g. constipation and falls).
And over-treatment can cause burden by ‘crowding out’ or de-prioritising treatment of the medical problems that really matter to patients.
GPs are starting to recognise that treatment burden is not just a problem for individual patients. It also reduces the therapeutic impact of biomedical care for long-term conditions such as diabetes, and is associated with poorer health outcomes.2,3
As a profession, we deal with the impact of treatment burden on a daily basis. GPs I have interviewed describe their frustration in wanting to offer personalised care, but being constrained by workload, competing priorities, and especially uncertainties related to how others might judge any beyond-protocol decisions.
Two faces of general practice
We have seen a renewed interest in generalism as a potential solution to this problem. But as Lewis argues, there are currently ‘two faces of generalism’, and the dream of the GP who writes perfect care plans and whose patients self-care.7
The first – what I would describe as ‘organisational generalism’ – is essentially the integrated care model that many seek to implement within the UK, and describes the care model that Ann received. For example we could do all patient checks (for diabetes or blood pressure, for instance) at one appointment, or bring all the different members of the health care team together for the patient, rather than the patient going to each, one by one.
The alternative Lewis describes as a more revolutionary face of generalism – ‘one that challenges the search-and-destroy paradigm of modern scientific medicine’. This individually-tailored model of generalism builds on a different model of clinical reasoning, ’a new type of generalist who reasons deductively, not inductively – from the whole to the parts’. This second face of generalism is arguably the personalised care that Ann was missing.
The latter is my area of interest and work, and is my suggested solution to the problem of treatment burden – albeit one that needs testing and refining through scholarship.7 But GPs, health professionals and patients alike have other ideas too.
Dr Jo Reeve is a GP in Liverpool and an NIHR clinical scientist in primary care at the Heseltine Institute of Liverpool University. She is also the chair of the SAPC.
My doctor makes me sick will take place at the Isla Gladstone Conservatory in Anfield, Liverpool on 1 October. Dr Iona Heath, past president of RCGP, John Ashton, president of the faculty of public health, and David Geddes, head of primary care commissioning for NHS England, will be speaking at the event.
1 Reeve J, Lynch T, Lloyd-Williams M, Payne S. From personal challenge to technical fix: the risks of depersonalised care. Health and Social Care in the Community 2012; 20(2): 145-154.
2 Vijan et al. Effect of patients’ risk and preferences on health gains with plasma glucose level lowering in type 2 diabetes mellitus. JAMA 2014, 174(8): 1227-1234
3 Boyd et al. Healthcare task difficulty among older adults with multimorbidity. Medical care 2014; 3 (S2): S118-S125
4 Oni et al. BMC Public Health 2014; 14(1): 575
5 Balicer et al. 2012. Harefual, 151 (7): 388-392; Sav et al. Health Expectations 2013; doi: 10.1111/hex.12046
6 Lewis S. The two faces of generalism. Journal of Health Services Research and Policy 2014; 19(1): 1-2
7 Reeve J, Blakeman T, Freeman GK, Green LA, James P, Lucassen P, Martin CM, Sturmberg JP, van Weel C. 2013. Generalist solutions to complex problems: generating practice-based evidence – the example of managing multi-morbidity. BMC Family Practice; 14:112. DOI: 10.1186/1471-2296-14-112.