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The sick role
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.
What you comment on is of some interest to me as I have concerns about
the use of the word “frailty” in terms of referring to assessing long term conditions
I think avoiding this word completely in national documents would help in Encouraging patients to take more control and have a more positive self image rather than being on a frailty pathway.
A lot of food for thought here. Thanks Ed.
Thanks for your observations. You raise an interesting point about the gap between expectations of citizens, patients and professionals. This seems to me to be complex, layered and fluid over time. For instance it may well be that advanced practice and practitioners understand and act upon the advanced care model but this is not by any means universal and standard. Similarly people with long term conditions will have a range of expectations and needs that will often be in direct conflict with the prescription placed upon them by pathways, thresholds and care models however enlightened and engaging.
The key, for me, is the extent that we all internalise and reproduce the sick role that Parsons described to a greater or lesser extent. At various times in our lives we will gladly embrace or violently fight against the expected constraints that this places upon us. I for instance sometimes enjoy relaxing into my man- flu but fight doggedly against my increasing deafness and creaking knees.
Most particularly, as we age, we have expectations of what health, ill health and disability mean for ourselves and our relatives and what we can expect and demand of services that provide support and care. Entering hospital, say, 85 has a vastly different meaning and symbolism than an admission of a 65 year old. The research and practice around the institutionalisation of older people readily attests to the effect that this powerful symbolism and status has upon mental and physical wellbeing of older people.
So we have to go further in the dialogue between patient/user/citizen and professional to achieve a wider understanding of what people expect – not just at the point of diagnosis or care plan agreement but more widely in remodelling what the NHS is for. The model of experts-on-tap-not-on-top advanced by users and patients fits with the leading edge of policy making and contemporary visions of what people will want in the future. The problem is that we don’t all live at the cutting edge and most of us, me included, have internalised more muddled and contradictory expectations of health, illness and professional authority. In essence its a political discussion but not one that any professional politician will ever contemplate initiating.
An interesting article. There is another view about long-term illness which is that the label of chronic illness is sometimes given to people when the medical profession has actually not managed to successfully diagnose their illness/disease.
This is of particular interest concerning ME/CFS, currently coded in DSM 5 as ‘Somatoform Symptom Disorder’. This physical complaint is defined by muscular dysfunction which means that exertion makes the symptoms worse (and that can include being bedridden and completely helpless, for months or years). Treated from a psychiatric perspective, the patient is encouraged to think that it is their belief that they are ill which is causing it, and that resting is making it worse. CBT is recommended to change the belief; GET to encourage them to exercise. Yet even the treatment manuals acknowledge that treatment may encounter relapses, and that it is possible the patient will not regain the functionality which existed before the relapse. This is a clear case of illness being made worse by ‘treatment’. By contrast, as the early specialists recommended, immediate diagnosis (by symptom constellation) followed by a requirement for complete rest creates the conditions within which the (usually highly motivated) patient may begin slow progress towards recovery. A programme of rest, followed by the kind of advice and help prescribed for the exhaustion occurring in MS – carrying out life as normally as possible through mechanical assistance and logistical planning to minimise physical exertion – is what could lead to improvement and a relatively early return to normal activities in patients with ME/CFS. Instead, they are kept busy attending hospital appointments, diagnostic testing, delayed diagnosis, encouragement not to rest ‘too much’, and attending for treatments which make them worse. This doesn’t even make economic sense, when most people with ME/CFS want to get back to their normal lives as quickly as possible, but their genuine muscular dysfunction, and the fact that exertion does make the illness worse is determinedly misinterpreted as unwillingness to exert themselves – and there appears to be no attempt to interpret failures as other than failures of the patient to cooperate – never as an indication that the treatment methods themselves are just wrong. I hope that in your work in improving the situation of chronically ill people, you may effect some change in the way that ME/CFS is coded. I managed to get back to work within three months while still very ill – by managing to avoid any medical interventions. I am currently enrolled at Lancaster University to do a Ph.D. on the conflicting paradigms concerning ME/CFS, and how it is that the psychiatric paradigm has gained the dominance which it currently has, which is effectively keeping patient invalids and preventing recovery.
I have cared for two sons suffering from Schizophrenia for 27 years. One lives with the family, and has made excellent progress, looking normal, clean and tidy. The other son is supported by Social Services, and looks like a tramp. The Local Authority contracted to a private company for weekly on site support.
A man was found dead in his bed, he had been dead for two days.
This private company are often short of staff, and of poor quality.
The latest information given to me by my son is, Supprt Workers are moving into Advocacy, because it pays more money! but what training do they have?
My son became unsettled, when his friend was found dead, the GP contacted me for information on the name and contact details of his support network!
Why did the GP not have details of his care team!
I found the information for her by searching the internet for the contact details of the Private Contracted Company.
I am not considered a carer, and given no support from anybody.
For the entire 27 years of caring there have been only four individuals who have helped us in this role. Two GPs now retired, a Psychiatrist, and Sir Profesor Robin Murry.
I am in the process of putting together a case history, which will be sent to all involved in the New Reforms and the Health Select Committee.
When you have a CCG stating we are not responsible for Mental Health, then you have a problem.
I have worked in Mental Health Advocacy for over thirty years. This group are still at the ‘bottom of the pile’
Thank you, thank you I’ve been saying for such a long time that I’m not I’ll I just have MS!
See you at the conference hopefully!