Healthcare is an individually distributed commodity. Patients go to their doctors, often alone or with one other person for their appointments and treatment. Doctors don’t (except on rare occasions) visit their patients or treat them within their personal environments. Patients are given advice, usually within 15 minutes and sent home to act on this. As doctors we assume that once we provide a patient with the information they need, they will proceed to make a rational decision in their own best interest. We consult family members as an adjunct, but the implications of our health care decisions on the wider group is rarely considered during treatment planning. I know this because, as a newly trained doctor, I have not been taught how I might approach any of these aspects of health care delivery differently.
What I have experienced is one of the enduring challenges clinicians face: enabling patients to make lasting behavioural change. The DNA (did not attend) stamp chews through ink pads on the clinic reception desk with one in three Māori patients not attending a urologic outpatient clinic in 2017.1 Adherence to medications has been reported as low as 50% in Counties Manukau DHB.2 Māori, Pasifika and people with a low socioeconomic status are significantly overrepresented in these statistics which is reflected in the poorer health outcomes among these groups.2 Most doctors recognise the barriers preventing people from accessing health care such as time, financial pressures and stress, but more often than not missed appointments, non-adherence and adverse health behaviours are explained away as a failure of personal responsibility.
Our working model of personal responsibility is largely based on the Western sociohistorical construct of self-contained individualism. Here the self is a singular, unbound identity that is theoretically disconnected from others and the environment. It follows that we hold the individual singularly responsible for their actions and that we expect these actions to act in the individual’s best interests. Contrast this with an alternate construction of the individual that psychologist E.E Sampson has termed ensembled individualism 3 which is traditionally dominant among Māori and Pasifika cultures and also noted to be more common among those living in neighbourhoods of lower socioeconomic status. 4,5,6 Here the self/non-self-boundary is more fluid. The self is defined in relation to others and the environment does not exist as a whole without these relationships. This notion lends itself to a wider locus of control and responsibility. Self-determination is fostered within the context of a wider system, including family members and place. Obligations are not necessarily to do what is in the individual’s self-interest but to act in the best interest of the many relationships that contribute to the whole. Responsibility lies within a wider context and for this reason, may also appear more elusive to the clinician.
The theoretical models of the individual and their ensuing responsibility are important because they influence the nature and expectations of the relationships we engage in with our patients as well as influencing how we interpret patient behaviour. This includes what we tell ourselves when people don’t turn up for clinic appointments, how we discuss our patients with our colleagues, and what we ask of our patients after they leave our clinic and hospital rooms. Failure to recognise that there are alternative constructs of self as well as a related locus of responsibility can lead to premature labelling of people and their actions irresponsible. This undermines the possibilities we have in medicine of enacting lasting behavioural change and encouraging people towards healthier ways of living.
There are insidious and explicit ways in which self-contained individualism (and ensuing expectations of personal responsibility) is valued and fostered in our healthcare system over ensembled individualism. The historical basis of the system is telling. Formalised health care as we now know it was imported by Anglo-Saxon colonists and remained largely exclusionary of Māori (the major population group in New Zealand with a different cultural basis of self) until fewer than 3.5 generations ago. While the system has certainly become more open and self-aware, the underlying expectations of self-contained individualism and responsibility have not diversified to become more inclusive of other ways of being and approaching illness. Because the system works well for the majority of New Zealanders whose notion of the individual aligns with Western values there has been little impetus for this to change. For most New Zealanders these underlying assumptions are entirely appropriate and they thrive in a system predicated on a similar notion of responsibility and self.
Within ensembled individualism, healthcare is more likely to be seen as a shared commodity. In Māori culture for example, health is viewed as a taonga (treasure) inherited from ancestors. Responsibility for the health of an individual lies within a wider group, usually the whānau and the hapū, not the individual alone. A surgeon from Syria recently told me that it is very common for patients with cancer not to know they have cancer, but for their family to be told and manage their health decisions on their behalf. Occasionally Chinese families in New Zealand request a similar approach. For people with an ensembled sense of individualism, whereby group loyalties and relationships impact directly on one’s experience of health and illness, the way in which we may best enable our patients to exercise responsibility may require a different approach to that of the self-contained individual.
I recently met a woman in the emergency department who had brought in her 2-month-old baby because he had stopped breathing and turned blue for a few seconds. Talking with her I learnt she was living in temporary housing, had not received any formal antenatal or postnatal care, was feeding her 2-month-old baby solid food, and was sleeping next to him in the same bed – almost every risk factor there is for sudden infant death syndrome. While the breathing episodes were probably related to a viral infection that would clear soon, this mother and her baby warranted admission to hospital because of the social contract we have in medicine to protect those at risk, even if the risk is not directly due to a medical problem.
Our default medical approach was to tell this woman that her behaviour was wrong, and attempt to educate her on how to change it within the hospital setting. We rarely invested time talking to her about what her own barriers were to enacting change, what she thought would improve her situation or what her family and support networks also thought and needed. We treated her as though her world stopped at the four walls of her hospital room. And it didn’t work. Throughout her admission I frequently heard the nurses complaining about what they deemed to be her irresponsible behaviour, complaining for example that they caught her sleeping in bed with her baby despite having been given a pēpi-pod 7, which was where their idea of culturally appropriate care started and ended.
Only through exercising personal responsibility would this mother be able to enact long-term change but it was clear that our current attempts to enable this were inadequate. From what I had gathered through talking with her, her sense of right and wrong was informed by those close to her, determined by a predominantly relational sense of self, yet we engaged with her as a context-less, self-contained individual, assuming rational knowledge would simply enable her to change her situation and approach to parenting.
A better approach would have first involved recognising that there is another way possible. This often fails to happen in the hospital where we rarely stop to examine the underlying assumptions that inform our treatment approaches. The next step would have involved forming a relationship with her based on mutual trust, respect and the recognition of a shared goal; namely the health of her baby. Exploring the different ways of achieving this, rather than simply assuming, would have enabled us to establish a closer relationship and a more realistic sense of the path forward. The way forward would very likely have meant involving others – family, and important relationships close to the patient who all contribute to a shared sense of responsibility for the child’s upbringing. Most importantly perhaps, underlying all of this, is a greater appreciation of diversity and different lived experiences without judgement.
None of this is to excuse irresponsible or neglectful parenting, but to realise that irresponsibility is an explanation of exclusion. We must first be sure we have understood how it is that someone sees themselves and their locus of responsibility, where their duties of responsibility lie, and the barriers they subjectively experience in exercising these. We enter dangerous territory when we label people irresponsible, especially as those in a position of power with a duty to care.
The colonially-imported assumptions of personal responsibility are losing their effectiveness as our population diversifies and we become increasingly aware of the repetitive failures of our system to enact long-term change. With a sincere and concerted effort to widen our understanding of how we may best enable our patients to take responsibility for their health we can achieve more in our medical consults. We must approach each person with a willingness to understand their situation not apply our judgement to it. We must ask how we can help rather than assume. Family and wider support networks should be more routinely involved in decision making. This involves respecting alternative views of health and knowledge systems. For many the advice of a grandmother may be far more powerful and meaningful than that of a health professional. We must be able to appreciate this and use this knowledge skilfully. Without diversifying our approach we inadvertently harm those most in need of effective health care through misunderstanding what it means to them to be cared for and belong.
- McBride, N. (2017). Third of Maori are skipping specialist hospital appointments. Retrieved from https://www.stuff.co.nz/manawatu-standard/news/92363067/a-third-of-maori-are-skipping-hospital-appointments.
- Naidu, A., Al-Diery, T., Carey, S., Chow, S., Liu, J., & Kumar, S. et al. (2016). Predicting Primary Medicine Non-adherence at Counties Manukau Health Emergency Department (CMH-ED). Poster presentation.
- Sampson, E. E. (1988). The debate on individualism: Indigenous psychologies of the individual and their role in personal and societal functioning. American psychologist, 43(1), 15.
- Smith, J. (1981). Self and experience in Maori culture. In P. Heelas & A. Lock (Eds.), Indigenous psychologies: The anthropology of the self (pp. 145-159). London: Academic Press.
- Lykes, M. B. (1985). Gender and individualistic vs. collectivist bases for notions about the self. Journal of Personality, 53(2), 356-383.
- Rua, M., Hodgetts, D., & Stolte, O. (2017). Māori men: An indigenous psychological perspective on the interconnected self. New Zealand Journal of Psychology (Online), 46(3), 55-63.
- A pēpi-pod is a flax-woven basket in which a baby can sleep on the bed with their whānau within their own protected space. It was developed as part of a successful public health initiative to reduce the rates of sudden infant death syndrome, particularly among Māori infants.
Helen Ker is the founder and editor of Atlas and has recently become a doctor. She dislikes talking about herself in third person, but enjoys thinking about ways in which our health system can work better for more of us. Atlas is one small part of this.