Roland Barthes, the French literary theorist, philosopher and semiotician, died in 1980. His last book, written shortly before he died, is a meditation both on photography and on the loss of his mother who had died three years earlier. He writes:
In this paper, I want to argue that our task, as general practitioners, is to follow Barthes and interrogate the issue of continuity of care in relation to love and death and that, if we do so, we must move beyond the reductionist findings of biomedical science.
This position is supported by the English writer, George Steiner, who argues that the phenomenon of music demonstrates that rational, scientific investigation can never describe human experience completely:
Steiner explains that the more a piece of music matters to us – means for us – the less possible it is to explain why:
Continuity matters because there is more to being human than rationality. There are phenomena, like music and love, the importance of which is beyond evidence. Some aspects of human life cannot be proved and do not need to be proved. Continuity is another such aspect. Who ever heard of evidence-based love or evidence-based music? Why do we allow ourselves to be backed into a position where we must produce scientific evidence to confirm the importance of continuity of care before it can be valued?
Relationships are fundamental to human existence and human beings seek to create enduring and trusting relationships in all spheres of life. Medicine cannot be an exception because relationships help to create meaning and meaning mends.3 One of the key roles of the doctor is to provide patients with an explanation of what is happening to them. A plausible explanation that can be understood by the particular patient within the individual context of their own life-story helps them to feel less afraid and more hopeful. This optimism seems actively to promote recovery. Physiological processes, meanings and relationships are all interconnected and the interactions between patients and those who care for them can either diminish or exacerbate symptoms and suffering.4 Meaning has biological consequences5 and can both harm and heal.6
Meaning affects the outcome of biomedical interventions. It is invested in the form, colour7 and reputation8 of medication, in the attitude of the doctor to the patient, in the degree to which the doctor believes in the treatment he or she is prescribing, and in the quality of the relationship9 between the doctor and the patient. All of these affect the outcome of medical care.10
John Berger suggests that meaning is dependent on the passing of time – on continuity:
This seems to make sense of the research finding that the patient reporting that he or she knows the doctor is more important than any strict counting of consecutive consultations.12
In recent years, it has been in the interests of the economically and politically powerful to minimise the importance of the subjectivity of the doctor and to reduce the role to one of a competent technician. In this context, any doctor will do and the role and importance of continuity is systematically eroded. The sadness is that this is occurring just when the science of psychoneuroimmunology is beginning to explain mechanism by which continuity of care, and the meaning invested in it, help the patient to mend. Slowly, we are beginning to understand more of the complex relationships between individual subjective experience and the working of the body’s immune system and autonomic nervous system. This understanding begins to explain the ways in which positive and negative emotions can support or weaken the healthy functioning of the human body. Meaningful human relationships promote positive emotions and actively support the body’s capacity to mend itself.
Anthony Giddens, the British sociologist and former director of the London School of Economics, has written about trust:
This is the key. The doctor is not just a purveyor of technical expertise but, privy to the most intimate stories, becomes also an intimate on whom a person relies. Doctors must respond to both dimensions of trust: by applying robust biomedical knowledge within the context of a continuing personal relationship.
All of this becomes proportionately more important when we interrogate it in relation to death – in the care of the dying. Even the most mechanistic and reductionist of health service bureaucrats find it difficult to discount the importance of continuity in the care of the dying. However, if continuity is important for the dying, it must also be important for anyone who is fearful or suffering.
The British writer George Orwell underlined the cruelty of dying among strangers:
General practice provides an enduring setting within which it is possible to form relationships with patients while they are relatively well and this provides a robust foundation on which to build a meaningful response to the illness and disease that comes later.15 When serious, life threatening disease is diagnosed, it is inevitable and appropriate that the struggle against that disease becomes the primary focus of the doctor, but when it becomes clear there is no longer any hope of improvement and death begins to approach, it is essential that the focus shifts, once again, back to the unique suffering individual and that the relationship between doctor and patient shifts from the functional ’I-It’ to the full intersubjectivity of Martin Buber’s ’I-Thou’.16 ’I-It’ relationships treat people as objects to be studied and manipulated for individual or collective ends and are the foundation of medical science, while ’I-Thou’ relationships acknowledge the limitless subjectivity of the other and in so doing invoke and engage the subjectivity of the I. This shift involves real work on the part of the doctor.
When the disease is winning and death coming closer, it is crucial to see the person again, to rehear and rediscover their individual story, their achievements, hopes and fears – to follow the example of the British painter Frank Auerbach who, when painting a portrait, scrapes off the paint back to the canvas after each sitting, so that each time he starts afresh. Doctors too need to attempt a new portrait of the patient, one that leaves the disease behind. In doing this, the time of the individual human spirit can be detached from the time of the disease. The time of the disease is deterministic and inexorable but the time of the person remains their own and dependent on depth and intensity as much as duration.17 Doctors can only use different dimensions of time if they work longitudinally across time by providing continuity of care.
The Danish researcher, Heidi Bøgelund Frederiksen, highlights the fact that successive consultations do not necessarily create continuity.18 If there is no genuine understanding in the first consultation and the patient is not taken seriously, then there is no added value in the second and only a mechanical relationship is achieved. However, if the first consultation works, so that the patient feels recognised and heard, there is definite added value in a second consultation and the possibility of establishing a trustful relationship of mutual recognition.
Anthony Giddens also emphasises the intrinsic mutuality of the benefits conferred by personal continuity of care:
A continuing relationship has the potential to benefit both patients and doctors and to make their interaction immeasurably more rewarding than a succession of brief contacts between strangers.
Undervalued and underused, continuity of care is being slowly lost and this loss evokes the poetry of TS Eliot:
’There is only the trying’. Continuity demands effort, both to use it and to protect it. As soon as medicine moves beyond simple technical procedures, the benefits of practising within ongoing trusting relationships are obvious to practitioners and valued by patients. However, it is difficult for the relatively young and healthy to appreciate how important a trusting relationship becomes for those facing the profoundest fears, and young doctors with limited experience of how much easier it is to provide appropriate care to a known patient have similar difficulties. When most of the electorate and most policy-makers and politicians are also relatively young and healthy, the promotion and support of trusting relationships within health care are unlikely to be awarded the priority they warrant and the current policy situation within the UK bears this out. Nonetheless, our responsibility is to keep trying.
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