Implementing person- centred health care
Over a century ago, Francis Peabody told the Boston Medical Society, ‘We must not forget in treating diabetes that we are treating a man [sic] and not a disease.’ Candy’s patient-centred primary care physician understood this message in caring for Candy, a 63-year-old woman who had lived with Type 2 diabetes for six years. Candy had continued to visit him, commonly complaining of feeling tired and a little down. Lacking support from family and friends for self-care, she had been unable to stop smoking and follow her prescribed diet, exercise and oral agents for her poorly controlled diabetes. At her last visit, Candy had requested a care plan to help her feel better without stopping smoking and aiming for the strict blood sugar control that her physician favoured. He recognized that Candy, being still relatively healthy, occupied a ‘grey zone’ in which the appropriate intensity of glycaemic control to aim for was uncertain. He respected her autonomy by undertaking to explore with her the changes she was willing to make and how they might benefit her. He did not recognize that his remit was less to give Candy control over her condition than to help align their shared interests to optimize joint benefit. Today a person-centred physician is covering for Candy’s usual physician when she visits for care of the same problems associated with her living with diabetes. After listening to Candy’s story, the locum suggests that they aim to achieve what she and her regular physician both want – an approach tailored to suit Candy, yet also comprising ways that each party endorses for its potential to help Candy feel better and assist her physician to satisfy his moral interests in their mutual care. The locum physician and Candy agree to try to create such an integrated ‘win-win’ plan for caring for her diabetes. Faithful to their joint interests it will focus on activities that Candy can enjoy and conduct on her own and with others to improve her life, reduce her need for health care from her usual physician and optimize his ability to help both of them. The locum asks Candy what activities are fun and not fun respectively for her. He learns that walking hurts her knees but she likes watching tennis. Candy finds cooking and exercise boring but enjoys ‘surfing’ the Web. They identify Candy’s interest in digital media as a resource for her self-care. The locum encourages Candy to join an
online social support network of people with similar experience of living with diabetes. She can connect anytime with this group to feel less isolated and, with compassion, assist others who are like her. The network may also help her to learn about active video games she can play, standing or seated, at home or outdoors using her smartphone. Playing such games will add a physical activity component to her lifestyle and provide unobtrusive feedback to help monitor her health. The locum also mentions online sites and management apps, for example offering fun meal ideas using her favourite foods to help manage her diabetes. All these plans for Candy’s self-care will assist her usual physician, who will revisit her smoking after she has implemented healthy but pleasurable habits for eating and physical activity. A second story further illustrates how person-centred health care can differ from patient-centred health care. Rudy is the type of patient that many physicians would describe as a ‘problem patient’. He always seems to present for care in a state of crisis, make clinically inappropriate demands and then react with anger and other negative emotions to the inability of his physician to meet these demands. His physician recognizes Rudy’s anger as pain and strives to understand and manage it with him. The pain they recognize is Rudy’s pain and the care they produce is for Rudy. However, the physician feels lonely, emotionally exhausted and frustrated as Rudy’s behaviour continues to challenge her. To break herself free – and help Rudy – she makes her care person-centred by being courageously true to who she is as a person and gaining Rudy’s permission to tell him how their relationship makes her feel. She gently confesses to Rudy that it hurts her to feel some of his pain and to know that her feeling hurt weakens her care for him. Her emotional nakedness helps to establish with Rudy the credibility she needs in order to grow mutual trust between them and coproduce care for their shared benefit. These stories illustrate how my conceptualization of person-centred health care could look in practice. For such care to come fully to light, there is a need to focus on and foster preconditions for implementing it. Cultural and structural arrangements are needed to organize social development and social life in ways that cultivate and facilitate virtues that clinicians and patients require for this care. Obstacles to meeting this need include the difficulties of enhancing deep values, character and intrinsic motivation within existing social structures, including families and the education and health sectors. Regulatory and bureaucratic health systems, for example, retrofit concern for character and motivation into structures that limit clinical and patient freedom and moral action by standardizing social roles. For example, more than one fifth of experienced physicians in the United Kingdom have recently reported that workplace arrangements ‘sometimes’ or ‘often’ make it difficult for them to live up to their standards of good character.1 Intended to protect the public, structures including clinical practice guidelines, pay-for-performance programmes, and documentation and public reporting requirements can sometimes perversely influence clinical practice. Such arrangements can incentivize measurement fixation and ‘gaming’; increase administrative costs; restrict the time that clinicians,
struggling to protect their professional authority, can spend with patients;2 and limit patients’ opportunities for moral action. Without losing the need for external accountability in health care, humanizing health care will require creating social structures and institutions that intrinsically motivate health care teams, including patients, to make moral decisions – for systems are only as good as the people using them. Accordingly, it is necessary to empower people to share control over, and responsibility for, their choices, which can be more complex than rules and principles can codify. This need will require a cultural shift in society to redefine social roles and relationships and develop dimensions of personhood within social institutions associated with health care, families, education and technology. Such change is key to clinicians and patients developing good character as a public and private concern. As relational beings, persons can best address this concern through participating in communities to create ‘social and political arrangements that cultivate in citizens certain habits and dispositions, or civic virtues’.3 Progress toward these virtues will enable persons to progress toward actualizing their moral capabilities and promoting civic life and the common good. Implemented across public-private spaces, person-centred health care ceases then to overwhelm, since it legitimates moral governing by people as a collective responsibility in the realm of citizenship. This perspective resonates with Paul Ricoeur’s unwillingness to countenance people’s withdrawal from political and social engagement. Collective engagement by persons requires their participating in partnerships for social change. Such partnerships can connect service users and clinicians, for example through collaborative research approaches like Experience-based Co-design of services and care pathways. This approach involves staff, patients and even their carers in sharing their care experiences and working together to design, implement and reflect on public service improvements responsive to these experiences.4 Values clarification and values development enhance these processes by enabling participants to restructure systems that attend to what people care most about; for values are inculcated in people, not directly in systems. Everything flows from the person who, as Christian Smith notes, is ‘constitutionally social by nature’.5 For the common good of rehumanizing social life, people can be enabled to develop, recognize and draw on deep moral values to grow as persons and promote civic freedom through, and within, change to social systems. To imbue people with moral values and form their identity and ‘social character’, systems and institutions need to help them to develop their individual character. This chapter will discuss potential strategies for implementing this conceptualization. I will suggest ways to create a subculture-environment of social structures and processes for developing the character of clinicians and patients to advance social relations for person-centred health care. Specifically, I will discuss areas of social life that present opportunities to develop these conditions. I will begin with infants’ early character development through child-rearing, including
potential benefit from religious upbringing. Building on this foundation are discourses and partnerships that can take place between families, schools and religious institutions to educate children in moral values and develop virtues. In health care, character education can further take place at young adult ages and through lifelong learning by health professionals and patients. Complementing character education and social reform is the potential for technology to mediate change, for example through informational media and the scope for moral bioenhancement and related advances to optimize moral being. I will discuss these openings for change before looking at how to review progress toward, and the impact of, implementing person-centred health care, and balance the welfare of patients and clinicians when their deep values differ.