More than the malady – patients as role models

Reading William Osler, as one does towards the end of a career, I happened upon this observation: ‘Every patient you see is a lesson in much more than the malady from which he suffers. ¹ What did he have in mind? Other than a clearer appreciation of the presentation and course of pathology, what can patients teach that is ‘more than the malady’? I propose that, through watching the many ways people respond to ill health, clinical practice enables us to identify role models among our patients. These serve as patterns for our patient-hood.

Place and partner

Early on, as we develop clinical judgement and hone procedural skills, the patient becomes the necessary but passive scene of practice – the ‘patient as place’ – a benchtop upon which to pursue medical science or, more grandly, a canvas upon which to render the ‘Art of Medicine’. Of course, this objectification is unsatisfactory. Successful engagement with the ‘patient as partner’ requires the capacity to communicate and negotiate. Entering this partnership, we learn that ‘common sense’ is not necessarily common. Preferences and decisions, that may differ from our own, are influenced by long-held values and beliefs, by expectations and experiences even by temporary circumstances and obligations.

We find that learning is a two-way process. Osler’s earlier statement could be reversed – every doctor seen is a lesson in much more than the practical application of medical science – and his famous maxim ‘Listen to the patient’ ² might have concluded, ‘they are diagnosing you’. Through the occasional ‘thank-you message’, detailed complaint, anonymous website rating, or reports at Appraisal, patients hold up a mirror in which we glimpse the sort of doctor we have become. They comment less upon scientific knowledge and more upon kindness, constancy and compassion, attributes that are not prerequisites for identifying pathology. ³ They are describing the clinician’s ‘bedside manner’ that conduct of the doctor experienced by the patient.

Purpose and portent

But what price bedside manner beside an empty bed? Medicine’s tragedy is that for its practitioners to reach their apogee a fellow human being must be suffering. Bearing witness to that suffering, listening to (and re-telling) the stories of those who suffer, is an important aspect of caring. ⁴ This introduces the ‘patient as purpose’. Patients are our focus, and the maintenance of their health is the purpose of our ‘calling’.

Importantly, it is the patient, and not the disease, who calls. To those not involved directly in providing care – those outside the ‘forest of medical practice’ – the call sounds crystal-clear. However, to those in the thick of it, often it is drowned out by competing noises. At handover meetings, the people we once vowed to serve are traded as lists of tasks. ⁵ When reduced to the ubiquitous reminder to ‘chase bloods and CT’, the person of the patient and the purpose of the practitioner are lost in the imperative to get ‘the job’ done. ‘Efficiency’ asks not ‘Why?’ but ‘When?’.

Physician and humanist Leon Kass wrote, ‘When one professes medicine, one offers the healing, comforting, and encouraging hand, which, when it is grasped, may not be pulled away, at least not without providing for its replacement’. ⁶ However, health is merely a state of pre-morbid complacency. Doctors, not being immune to disease, reach out to patients from the brink of their illnesses.

From our proximity to patients, we learn about human nature. Like the locked-down fictional Dr Rieux, we observe that ‘. . .in the midst of such tribulations, . . . there is more in man to admire than to despise’. ⁷ We also learn about the nature of humans. We comprehend that the fate of all, ourselves included, is to suffer. According to Rita Charon, and continuing the ‘forest of practice’ analogy, ‘This, perhaps, is the work of healthcare – to make clearings where we mortals, solitary and at the same time together, can envision what awaits us and can gather courage and acceptance from one another as we move forward towards our ends’. ⁸ For Charon, the patient is not the place, but rather shares the space, of practice. Here they remind us of our common fate. This is the ‘patient as portent’ – a sign of things to come.

But these safe spaces are not just bee-loud glades of peace in which to contemplate brittle health and impermanent life. The patients we meet there, exemplars of biological dysfunction as Osler implied, also serve as case studies of myriad human responses to suffering. Our learning from them goes beyond a tacit acceptance of the inevitability of illness to a more practical understanding of what it is to suffer, and how to do so. Not, will I become ill, but how will I conduct myself when I do?

Pattern

Here, instead of answering the question “What makes a ‘good patient’?” from the perspective of the practising, usually healthy, clinician, we are making reflective preparation, for which, given the nature of the medical practice, we are well-equipped. We ask ourselves, among those patients for whom I have cared, which of their behaviours would the ‘healthy-me’ pack in readiness for my journey into illness?

Learning from role models involves a deliberate decision to act in a particular way, based upon the previously witnessed conduct of others. We are familiar with this concept in developing a clinical persona. Less appreciated, at least less commented upon, are the opportunities clinical practice provides to identify role models who may prepare us for our patient-hood. This is the ‘patient as pattern’, people whose lives, when considered through their perceptions and experiences – considered phenomenologically ⁹ – provide examples we can follow.

I recall Philip, who transitioned from ‘heart-sink’ to ‘heart-lift’ as his frequent self-absorbed missives about the intricacies of dietary supplements and the standard deviation of his pulse pressure measurements, gave way to increasingly wide-ranging discussions on the educational value of BBC Radio 4 and the benefits of Real Ale, all punctuated with Shakespeare and Horace.

Elwyn, a retired geography teacher, invited medical students to listen to his heart, before thoughtfully wishing them good luck in their studies. When describing his pain on a scale of 1–10, he explained that his present score was also the number of his favourite bus route – he had spent a few months driving buses decades earlier.

Mari confided that though she struggled to put on her day clothes, she thought it would reassure her adult children to find her dressed when they visited. She still felt an obligation to comfort them, and anyway, if they were making an effort by coming to see her, she should make an effort too.

Just this week, Huw, still coming to terms with a life-shortening diagnosis, illuminated the experience through his tale of the automatic door that failed to open as he walked towards it. Before his diagnosis, he would have wondered what was wrong with the door, now he wondered what was wrong with him – ‘Is this how it ends’, he mused, ‘unseen, unsensed?’

In many clearings, role models abound. Some embody courage and resilience in the face of adversity. Some continue to respect the needs and interests of others, acknowledging and mitigating the burden they are becoming. We meet some who radiate a trust that brings out the best in us, and others who exhibit simmering resentment and hostility. We witness those who show their loved ones a way through the crisis of illness, who remember their health with pride and affection and not just with grief and regret, and those who demonstrate a form of humanity that transcends its constraint. These are ‘individuals whose aspirations [are] not undermined but heightened by chronic illness and whose lives with illness can be said, without romanticising and therefore distorting their daily struggle, to be victories’, ¹⁰ people who have attained equanimity by shifting their attention from past disappointments and future uncertainties to live in the present – ‘now is where the reality is: liquid time solidified into a crystal drop of Now’. ¹¹

Admittedly, there are problems with my proposition. Not least that our preparations count for nothing if the character of our eventual illness robs us of the time or capacity to emulate the behaviours we have admired. Our carefully packed suitcase of provisions remains on the quayside as the ‘good ship Health’ steams away. Furthermore, from the forced litany of place, partner, purpose, portent and pattern – itself a conceit too neat to capture all our tangled interactions with patients – we should prioritise purpose and partnership. The idea that doctors might seek role models among their patients may appear at best a distraction from clinical duties and at worst a selfish indulgence, even a perverse fascination. In fact, the clear separation of doctors (Us) and patients (Them) within this article may be interpreted by some as evidence of professional arrogance, an exercise in objectification. Doctors should serve, not gain.

Yet, medical practice remains an inter-personal activity that inevitably affects all its participants. If we are prepared to reach out to patients, exercise empathy and make the imaginative leap to view the world from their standpoint, it is unsurprising that we return from that experience with new understandings that, later, we can put to our use. Only the most miserly commentator would begrudge us such valuable lessons, that are truly ‘more than the malady’.