Stories from patients and families: an invitation to a co-productive partnership in healthcare service
The writer1 describes the central importance of human relationships – in healthcare services, in our efforts to improve quality and safety within healthcare, and in society at large. The work of healthcare professionals, although action-focused and often technologically complex, always takes place in the context of human relationships. These relationships unfold in place and time.
The ancient Greeks had two words for time – chronos and kairos. Chronos time is measured sequentially in minutes, hours, months and years. Kairos time, by contrast, is an indeterminate duration – a season, a period, a moment – in which something of significance occurs. A daughter standing at the bedside holding her dying mother's hand waits in kairos time for the transition that will usher in the next chapter of her adult life. The health professionals attending to the patient in bed 3 work – for the most part – with diligence and good intentions, day and night, in ordinary chronos time, clocking in and clocking out. Although patients and families and health professionals may meet in the same physical location in a room in the ICU, they are existing in two different kinds of time.
Health professionals and patients and families consequently understand the quality of any healthcare service through different filters. For the nurse, it may have been a fairly routine change of socks in the setting of a slightly busier-than-usual evening; for the daughter, the nurse's brisk touch was nothing less than a sacramental violation of the holy ground on which the dying always walk.
When we wrote about co-producing healthcare services,1 we developed a conceptual framework (Fig 1) that puts the relationship between patients and families and health professionals at the centre of the healthcare enterprise. The model defines different levels of partnership between health professionals and patients, starting with a base of civil discourse and building to include co-planning and co-execution. These relationships occur, of course, within a larger context – the healthcare system with its specific design constraints and flexible boundaries, which itself operates within the larger and more complex dynamics of the wider community and society.
All healthcare service outcomes – both good and bad – are inherently co-produced by the knowledge, attitudes and behaviours of patients and families and health professionals. Good healthcare service outcomes, we suggest, are more likely when better partnerships are intentionally cultivated. Poor outcomes are more likely when relationships between healthcare professionals and patients and families have no foundation of trust, when communication is not effective, when patients and families are not invited to bring their own expertise to the endeavour.
At the bottom of the framework shown in Fig 1 are directional arrows that point to an intermediate outcome identified in the model as ‘coproduced high value healthcare service’. Ultimately, the model suggests the healthcare service outcome is important in so far as it contributes to the ultimate aim of good health. The healthcare service outcome in the accompanying story is the evaluation and management of the cardiac arrest; the ultimate health-related aim of the interaction, however, might be conceived as death with dignity and compassion. The writer suggests that her mother received state-of-the-art, evidence-based technical care for her cardiac arrest. What mattered to the family, however, in the kairos time in which they stood at the bedside, was kindness.
The daughter-cum-healthcare improvement activist who writes movingly about her mother's death gives us the gift of describing her experience with the healthcare service she and her family co-produced with the healthcare team. Unless we hear the stories, we health professionals do not know what we are ‘making’ in the lives of our patients and their families. Stories like these – told by patients and families – permit us to see what we are co-producing. Too often, we measure the quality of health professional work using numbers alone. Numbers are best at counting action; they have limited descriptive power in the domain of relationship. Narrative opens a different territory. Too often, when we are measuring the quality of our professional work, we stop at the intermediate outcome – the co-produced healthcare service – and don't look far enough to see if we have achieved the ultimate aim of creating health outcomes that matter to patients and families.
Looking at the relationship from the perspective of patients and families, and the connection between this relationship and the actions that co-produced the outcomes described in the narrative, invites us into new opportunities for improvement. How might we be better partners with patients and families in the actions taken on our cardiac care units? How might we orient patients and families to the rhythms of work and care in these units so they might participate as effective members of the care team? How might we engage patients and families in daily care, including the tender acts of washing and feeding and clothing the bodies of their loved ones? How might we make space for patients and families to tell us about themselves and what matters most? How might we cohabitate respectfully with patients and families in the same physical space while we operate in different dimensions of time – the chronos of daily work and the kairos of critical illness?
The writer has gifted us not only with her story, but also with her altruistic decision to join us in making positive change within the healthcare system through the RCP's Patient and Carer Network. Full partnership between health professionals and patients and families, which transforms healthcare service at the bedside, is made possible (or impossible) by innumerable healthcare system design choices. Effective design and improvement of the healthcare system – just like effective co-production of health outcomes in an individual clinical encounter – requires us to welcome patients and families into a relationship with clinician leaders and administrators as full partners in healthcare system building and rebuilding.
- © Royal College of Physicians 2016. All rights reserved.
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