This question became prominent during the study because patients' understandings of 'care' often seemed at odds with those of healthcare professionals. What particularly puzzled me was that healthcare professionals often espoused concepts of good care such as 'shared decision-making', while patients found that the interactions involved did not meet their needs.
While healthcare professionals thought they were 'sharing decisions' or 'involving' patients, patients could simultaneously feel that they were struggling to 'get a conversation' with the doctor or nurse.
The ethnographer and philosopher, Annemarie Mol, has described good care based on astute observations of the care provided to patients with diabetes (see footnotes 1, 2). Her work is inspiring to read, and I would highly recommend it to both patients and healthcare professionals. She meticulously describes care practices (the detail of what actually happens) — the "tinkering" which is necessary to "try, adjust, and try again" (1) and to find compromises between what would be ideal, and what is actually possible in the context of everyday life.
For Mol, care is ongoing, relational, and often requires that healthcare professionals get involved in the nitty gritty of patients' problems and concerns as they unfold, using the various (and always developing) technologies at their disposal. Good care, according to Mol, requires attention to detail, and to actively listening and responding to patients' concerns. Ultimately, good care seeks to "improve life" in an immediate, tangible way (2).
Since starting work on a research project with a local hospice, I have noticed that many aspects of hospice (palliative) care seem akin to the practices Mol describes. The raison d'être of hospice care (to "place a high value on dignity, respect and the wishes of the person who is ill") may seem intangible, but my observations suggest that such ideals are frequently reflected in the everyday experiences of patients and families; the rhetoric and the reality line up well.
Care often requires that healthcare professionals get involved in the nitty-gritty of patients' problems and concerns.
As Cicely Saunders, founder of the hospice movement, said: "You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die".
This attention to helping patients live well in the here and now is central to hospice care, with patients and families valuing healthcare professionals' close attention to their individual needs, and coordination of different interventions to minimise disruption. But the core of what it means to 'care' straddles all healthcare provision, despite the needs of palliative and non-palliative patients perhaps seeming to be fundamentally different.
For those who are 'rethinking medicine', Mol's work, and other accounts of good care experiences (e.g. from the hospice movement), provide a timely reminder that good care practices (which are often difficult to see or measure) are at least as important as good care concepts.
As my study of cardiovascular disease prevention showed, it is all too easy for concepts such as 'shared decision-making', although rooted strongly in ideas of 'patient-centeredness' (and keenly promoted by individuals who are deeply committed to the values and practices that underpin them), to then be bandied around more generally as though they can adequately stand in for what actually happens. In reality, the terms may be employed as empty 'shells' — concepts filled with notions of what happens, but which do not match what is experienced by patients in practice (see 3).
If models such as shared decision-making or social prescribing are to have real impact in a new way of 'doing medicine', it will be important to distinguish between good care concepts and good care practices; attention should be paid to what these interventions actually involve when they are implemented in practice.
Good care of the kind that Mol describes will also need to be promoted and strengthened to ensure that such interventions (and technologies) are joined up coherently as part of truly individualised care — care that supports patients to improve their lives within whatever medical or social constraints they face.
Mol A. The Logic of Care: Health and the Problem of Patient Choice. London ; New York: Routledge; 2008. 160 p.
Mol A, Moser I, Pols J. Care: putting practice into theory. In: Care in Practice: On Tinkering in Clinics, Homes and Farms. 1 edition. Bielefeld; Piscataway, NJ: Transcript-Verlag; 2010.
Smith DE. Institutional Ethnography: A Sociology for People. Rowman Altamira; 2005. 271 p.
Caroline Cupit is an Honorary Research Fellow at the University of Leicester's Department of Health Sciences.