Supporting lives lived whilst protecting lives saved during COVID-19: The relational invariant in person-centred care

Abstract

There has been an impressive development of nursing knowledge around the ethics, principles, frameworks, models and practices of person-centred care over the last 15 years, with colleagues from the Nordic countries making significant contributions to global knowledge across the discipline of nursing and beyond. A disciplinary challenge remains to map the variability in person-centred care with an aim to empirically clarify the invariant in person-centred care. Based on current research and practice, as well as the COVID-19 pandemic, this article argues that the relational aspect of person-centred care is such an invariant, building on the socially constructive notion of ‘personhood’ being a standing or status that is bestowed on one human being by another in the context of relationship and social being. During the current COVID-19 pandemic, several of the key determinants of person-centred care are under threat due to health service responses and/or infection control measures, such as keeping older adults safe, imposing relationship restrictions, social distancing and isolation (or the lack thereof). Clinical examples from an Australian health service are used to show how recognizing the relational invariant of person-centred aged care facilitated supporting lives lived whilst also protecting lives saved. The relational invariant to person-centred care is who we are, constructed or deconstructed by and with others; something that may have become more visible through the relational restrictions imposed due to COVID-19. Protecting relationality in life and care and advocating for both safe and person-centred care for those who need it most is now more important than ever.

There has been an impressive development of nursing knowledge around the ethics, principles, frameworks, models and practices of person-centred care over the last 15 years, with colleagues from the Nordic countries making significant contributions to global knowledge across the discipline of nursing and beyond. A number of observational, conceptual, interventional, exploratory, and practice development studies have been conducted, in which person-centred care has been stringently defined or more broadly conceptualized and operationalized. Person-centred care has had a widespread uptake in policy, practice and academia across the Nordic countries, Europe and beyond, indicating the wide applicability and apparent timeliness of the concept. It has been argued that the applicability of the concept is a strength in that it facilitates describing a core humanistic, ethical and experiential component of nursing and healthcare, but also that the applicability of person-centred care can be a threat to the conceptual consistency and accumulating aggregation of knowledge if not carefully reflected on and described. ¹ It remains reasonable to expect some clinical inter-contextual variance regarding how person-centred care is described, operationalized and evaluated, as well as some inter-personal variance in how person-centred care is understood and experienced. A disciplinary challenge remains to map this variability with an aim to empirically clarify the invariant in person-centred care. Based on our and others’ research and practice, we have come to understand the relational aspect of person-centred care as such an invariant, building on the socially constructive notion of ‘personhood’ being ‘a standing or a status that is bestowed on one human being by another in the context of relationship and social being’, ² and the illness narrative literature indicating how people requiring care or support are exposed to being reduced to disempowered roles (patient/resident), derogatory incapacities (demented/diabetic) and/or symptom labelling. The co-construction of identity and care between the person in need of care and/or support and the person providing this care/support, echoes the ethical demands of preserving dignity and the human rights to exercise autonomy, choice and control; something that requires relational awareness, multi-lateral decision-making and facilitation of health-promoting relationships. ³

It is also recognized that person-centred care in the context of aged care builds on maintained ways of life, the formation of close and intimate relationships, and being able to make choices and living life as subjectively as possible rather than based on institutional directives or authoritarian definitions of health and lifestyle. As an invariant to person-centred care, relationality is fundamental, in that relationships sculpt the being, doing, becoming and belonging of our existence, and contribute toward shaping us, keeping us together and holding us in place. Relationships between residents, their families, staff and the wider community have been described as fundamental to living a life of meaning for people in need of aged care,^3,4 and thus the clinical context of aged care in the midst of a societal infection control response to the COVID-19 pandemic can provide some interesting insights into the priorities and values put upon older people, aged care and person-centred care in organizations, communities and societies. During the current COVID-19 pandemic, several of the key determinants of person-centred care are under threat due to health service responses and/or infection control measures, such as keeping older adults safe, imposing relationship restrictions, social distancing and isolation (or the lack thereof). Even though such measures are arguably needed from a public health perspective, they may inevitably result in less personal choice, reduced decision-making capacity, limited social interaction and isolation, disrupted routines and, for some, vanishing hopes and dreams. Relationships world-wide have had to be limited and/or reinvented to protect lives, with different countries showing different processes, priorities and actions.

Social distancing responses to COVID-19 in Australian residential aged care contexts have generally meant vast restrictions in visitors and public access into aged care facilities, as well as modified interactions between residents and carers. Hesse Rural Health is a health service provider in Winchelsea, Australia, that offers acute and sub-acute care, respite and palliative care, residential aged care and secure dementia care in rural Victoria. Rather than implementing radical infection control changes without multi-lateral consideration, the leadership team at this facility adopted a reflective approach and welcomed input from residents and their families. A 95-year-old man living at Hesse Rural Health offered his advice to management about their response to the COVID-19 pandemic, suggesting that the residents themselves, with their experience of historical hardship and wisdom of resilience, had much to offer in terms of guiding the way forward through the pandemic. He made the point that to endure and survive hardship and difficulty of this scale, keeping in contact with family and friends was a necessity, highlighting the humanistic need for social connection and relationality as fundamental for coping and adaptation. Hesse Rural Health considered the views and health of its residents and subsequently allowed a restricted number of family visits to keep vital relationships and crucial social connections going. Changing practice to promote this new form of person-centredness also meant creating new roles and routines. With locked doors to minimize outside exposures, highly restricted family visits were pre-arranged and nursing staff were directed to check the temperature of everyone entering the facility including staff, contractors and the limited number of approved visitors. All approved visitors were registered and asked to make declarations of their health status to enable any future contact tracing. In this way, Hesse Rural Health made an active decision to support lives lived whilst protecting lives saved, recognizing the relational invariant of person-centred care. In the wake of implementing these unprecedented interventions the leadership team reflected, ‘with the possible impacts of resident loneliness, sadness and emotional decline anchored in our minds, there emerges willingness to participate in new experiences, a sharing of life and an appreciation of care both beyond and inclusive of the clinical.’

New initiatives in the clinical environment to support person-centred care and relationality also evolved from the COVID-19 restrictions at Hesse Rural Health. Safe isolation and education spaces were created to train staff in the use of personal protective equipment (PPE), plans were made for potential increased demands of palliative care, and virtual consultations with medical practitioners were organized. Staff at Hesse Rural Health liaised with local school children to write letters to the residents wishing them well, keeping the connection to the community strong. Also, residents have been supported to share digital photos, send emails, and utilize social media platforms to support external relationships in the midst of social restrictions. One female resident was on a video call to her granddaughter when the staff member assisting her suggested she could place the device on a platform to reduce the strain on her arms. The resident declined and responded that she preferred to hold the device because ‘it feels like I am hugging her’. In many ways, this interaction illustrates how staff at this facility embodied person-centred care principles to maximize opportunities for residents to continue having options, choices and relationships within and beyond their care and living environment so that they may not only survive, but thrive during these trying times. ⁵ As illustrated by these clinical examples, the invariant of relationality to person-centred care was prioritized and protected through a combination of initiatives and processes, clinical as well as architectural, managerial as well as operational, where inter-disciplinary knowledge and nursing leadership was used to safeguard relationships and social connections, whilst at the same time protecting life and positive outcomes of residents and the community.

In the academic literature, positive outcomes from person-centred care have been described in terms of quality of life and quality of care.^6–8 Person-centred care has also been described as improving the satisfaction of residents’ families with care, while also improving staff job satisfaction, and reducing stress of conscience.^9–11 In the current climate, safeguarding a person-centred approach to pandemic responses, and promotion of positive outcomes such as those described in the clinical examples from Hesse Rural Health, can provide important experiential perspectives on protecting and preserving safety as well as overall health and well-being. By exploring outcomes related to leadership and implementation of person-centred care during these times, we may better acknowledge, measure and respond to the changing needs of aged care recipients and other vulnerable groups. It seems particularly important to distinguish positive outcomes from negative outcomes, clinically as well as academically, to not assume experiences of well-being simply from the absence of ill-being. If we can validly and reliably measure and identify such positive outcomes, opportunities emerge to isolate modifiable factors that can influence person-centred care outcomes in everyday practice. However, given that the outcomes of person-centred care can indeed be ‘personal’, it seems important to engage instrumentation that is sensitive to the intricacies of the context and the life-stage of the individual. A recent review of common data elements for measurement of care outcomes (well-being, quality of life and personhood) for people living in nursing homes recommended the Thriving of Older People Assessment Scale (TOPAS) for measurement of personhood. ¹² Relational aspects are central to the TOPAS tool, including domains related to the individual, care staff, other residents, opportunities for activities, and satisfaction with the wider aged care environment.^13,14 The TOPAS has been published and is available for consideration and use.

As most of the world have now experienced what it means to have choices taken away, have restrictions placed on our environments and relationships, and being instructed on how to live one’s life, perhaps we can now better understand and protect the relational aspects of life and care within and beyond nursing and aged care, as well as to more vocally advocate for the provision of safe and person-centred care for those who need it most. The relational invariant is who we are, constructed or deconstructed by and with others.