The person-centred approach (PCA) is at the forefront of end-of-life care (EOLC), aiming to prioritise the individual needs and values of patients and their families in decision-making, planning and resultant health and social care[i],[ii]. Evidence suggests that this approach is beneficial for both improving outcomes and reducing care expenditure[iii]. Given more people are going through a chronic process of complex symptoms when dying, how to deliver person-centred care in EOLC has increasingly become a public health interest. Hence, public policy seeks to mitigate the conflicts between the increasing demands of individual EOLC and the pressure on health and social welfare systems[iv].
While a growing number of countries and regions have developed (or are in the process of developing) dedicated EOLC policies, a significant ‘policy-implementation gap’ remains[v]. This gap questions the inadequate processes of policymaking and unequal access to EOLC services. This gap is likely to be further amplified during the translation of PCA into practical, ethical and moral protocols. As a key principle, PCA has been extensively integrated into EOLC policy discourses, including policies, laws, and (inter)national organisational and occupational guidelines. However, PCA in EOLC policies potentially confront the competing agendas of prioritising individual care and public health interests, suggesting that policies may apply standardised lens to EOLC with limited emphasis on individuals and their holistic needs[vi]. Therefore, it is imperative to examine how EOLC policies interpret and implement PCA and how these can interconnect with the real world.
This study focused on England and Japan to examine how PCA is embedded in their key EOLC policies and the implications of these policies on EOLC experiences across various settings. Despite being socio-culturally different, England and Japan are both affluent societies with highly developed care systems, that are also confronted with rapid population ageing and high degrees of medicalisation of dying[vii]. Thus, both countries share challenges, including increasing inputs for older people, end-of-life care and planning, dementia, and the legitimacy of euthanasia and assisted dying. Meanwhile, cultural divergences between individualism in England and family-centred values in Japan have shaped different and sometimes competing expectations and perceptions of EOLC[viii],[ix]. Thus, while having mature systems and multifaceted provision of EOLC, both countries have developed unique policy approaches to conform to their socio-cultural dynamics.
To better understand PCA in EOLC policies, we critically examined key policy and legal documents from England and Japan. Despite adopting an international perspective, we did not intend to carry out an exhaustive review of EOLC policies or a comprehensive review of the literature. Instead, we sought to capture a broader picture of (1) how PCA is constructed in English and Japanese EOLC policy discourses, (2) the associated policy implementation gaps. Ultimately, this study aimed to identify avenues to strengthen EOLC policies in each country and further facilitate mutual learning.
Understanding person-centred approach in end-of-life care
The concept of person-centredness has increasingly gained popularity in health and social care since the 1990s1. Central to this concept is a western emphasis on free will, asserting that care recipients are inherently self-efficient and reflexive in making the right choice[x]. This conceptual focus has been widely operationalised as a person-centred approach (PCA), while various interchangeable terms (e.g., individual-, patient-, client-centred) have also emerged, emphasising the values and needs of patients as independent beings in different care/service contexts[xi],[xii]. More inter-personal PCA models have also been argued for to highlight the relational nature of individual needs and agency2,11. Despite PCA being broadly adopted as an ethical principle in health and social care, there are diverse and even competing interpretations of what it means to be a person in different disciplinary and cultural contexts2,[xiii],[xiv]. Thus, the conceptual connotations of PCA remain largely ambiguous and may lead to inadequate translation of person-centredness into practical and organisational spheres of care.
This ambiguity surrounding PCA is further compounded by complex and distressing circumstances in EOLC12. While emphasising patients’ dignity, autonomy and relationality during the dying process, PCA often confronts challenges for extending the person-centred principles past life to ensure a good death[xv]. Prioritising PCA may also cause controversies in issues pertaining to euthanasia and assisted dying, contesting the boundaries of individual autonomy[xvi]. In light of these challenges, distinctive conceptual developments and practical innovations have evolved to respond to the complexity of PCA in EOLC11,12. A conceptual maturing of person-centredness has occurred in the Hospice Movement, emphasising dying patients’ ‘total pain’ in response to their progressive and multifaceted deteriorations[xvii]. Building on this hospice philosophy, PCA has gradually been integrated into EOLC to promote more holistic and humanistic care for dying patients and their families14. In addition to care, advance care planning (ACP) has consistently emphasised PCA to enable people to take control of their care before losing the ability to make their own decisions[xviii].
PCA has also drawn criticism for not fully addressing the rich matrix of human experiences that encompass individual, familial, sociocultural and existential aspects of EOLC experiences15,[xix],[xx]. By prioritising individual autonomy, PCA may inadequately address the relational and social nature of EOLC experiences, in which patient care and decision-making are often co-constructed by family and practitioners2,[xxi]. PCA, which primarily focuses on medical settings, may also underestimate the role of community-based support, albeit there being a significant portion of people dying at home or in care facilities3. Furthermore, the western-centric PCA may inadequately recognise the values and needs of dying people from non-western cultures21,[xxii]. Critics have also challenged the scope of PCA in response to patients’ deeper needs to preserve their social and spiritual being and to alleviate distress due to existential loneliness and diminishing personhood20.
The complex and ambiguous nature of PCA can be particularly prevalent in EOLC policy discourses, as the standardised policy lens often does not focus on diverse needs of patients as unique beings[xxiii]. Nonetheless, how policies define PCA in EOLC and how these definitions impact practice remain little explored.