Dr Ed Mitchell, Clinical Fellow to Martin McShane, NHS England’s Director for Long Term Conditions, reflects on how the patient-doctor relationship is changing:
Being ill isn’t what it used to be; blame it on long term conditions.
In the 1950s, a founding father of medical sociology, Talcott Parsons, described illness as deviance -as health is generally necessary for a functional society – which thrust the ill person into the sick role (Parsons, T. The Social System. 1951. Glencoe, IL: The Free Press).
This role afforded the afflicted certain rights, but also certain obligations, which were described by Parsons in his four famous postulates:
- The person is not responsible for assuming the sick role.
- The sick person is exempted from carrying out some or all of normal social duties (e.g. work, family).
- The sick person must try and get well – the sick role is only a temporary phase.
- In order to get well, the sick person needs to seek and submit to appropriate medical care.
These postulates, and societal attitudes towards illness, were vividly captured in the bawdy films of the time such as Doctor in the House and Carry on Doctor. The patient, in gown or pyjamas (thereby identifying and labelling them as ill), listened anxiously to the dispassionate words of the august surgeon who graced their bedside, desperate for any clue as to when he or she might be released from hospital back into society.
The route of such release was rather binary: it would either be via the front door, having been completely cured, or alternately via the mortuary. If these comedies now look rather dated, history has been equally unkind to Parsons’ work (Williams SJ. Parsons Revisited: From the sick role to…? Health, 2005, 1363-4593; Vol 9(2): 123–144, DOI: 10.1177/1363459305050582).
Gone are the days of languishing in pyjamas for weeks in hospital. Being sick is no longer a temporary phase, and not one which exempts us from our usual obligations; now the unwell usually continue completely as normal in their jobs and social lives.
We’re also less clear about who’s responsible for adopting the sick role; as unhealthy behaviours (diet, exercise, smoking, drinking) are implicated in many long term conditions. Patients will also be self-managing for most of their illness; the requirement that they must seek and submit to medical care is also looking unsound.
Instead of wanting to get better (an impossibility in much chronic disease), patients are now more concerned with avoiding the sick role altogether. The medical profession has accordingly had to adapt to the demise of the traditional sick role. We no longer expect the subservient patient to submit to our bedside ministrations.
As people continue with their social obligations, medical professionals have to offer them choice of how and where to be treated, so that we do not replace the burden of disease with the burdens of treatment and access to medical advice.
Developments in technology and digital health will help minimise the need for face to face contact, but where it is needed, it should be at the convenience of service users rather than the convenience of the service.
Initiatives like seven day working, and the use of non-traditional, community-based providers will also ease the burden for patients – why go to a hospital if you’re not sick?. A cure will not be the goal of the clinician or person they are helping treat, and the optimisation of physiological parameters such as glycosylated haemoglobin will be only a means to an end. Instead, the goal of medicine will be to minimise the disruption of their illness upon patients’ lives.
Parsons’ ideas were influential well into the 1990s, when the architect of the Chronic Care Model, (Wagner EH, Austin BT, Von Korfs M Improving outcomes in chronic illness. Milbank Quarterly 4:12-25, 1996), Ed Wagner, realised the traditional return to health was increasingly less an option, and a return to as normal a life as possible was the new standard in healthcare.
The Chronic Care Model identified the major changes the healthcare system must go through in order to complement the patient’s priorities, including the creation of a healthcare culture and delivery system which promotes safe, high quality care and empowers patients to achieve self-management in the community – along with decision support and clinical information systems which make it easy to transfer between care settings.
By emphasising the patient’s goals, the model immediately flipped the doctor-patient relationship on its head: the patient becomes the expert, as only they can tell us how to minimise the effects of illness on their life. Identifying and achieving the goals important to patients (rather than medical professionals) requires a care planning approach, by which the patient and professional act in partnership to identify goals and select the combination of treatments and services most likely to achieve them.
Such aspirations could not be further from Parson’s postulates or the depictions of clinicians and patients in the films of the era. Indeed, the long term condition has made it is less and less appropriate to refer to people as patients – a term meaning ‘one who suffers’.
At NHS England’s forthcoming Future of Health conference, we will have a panel composed of people with long term conditions – who will be present at all sessions so we keep talks and discussions relevant to their concerns. (See the blog by the “Patient Patient”, Anya de Longh.
We wrestled with the name of this panel: ‘Patient Jury’ or ‘People’s Jury’? People’s Jury won out: with the rise of the long term condition, we’re rightfully sick of the sick role.
- Dr Ed Wagner will be speaking with Dr Martin McShane at the Future of Health: Long Term Conditions conference on the October 3 & 4 in London.