Engagement with the historical and theoretical underpinnings of measuring quality of life (QoL) and patient‐reported outcomes (PROs) in healthcare is important. Ideas and values that shape such practices—and in the endgame, people's lives—might otherwise remain unexamined, be taken for granted or even essentialized. Our aim is to explicate and theoretically discuss the philosophical tenets underlying the practices of QoL assessment and PRO measurement in relation to the notion of person‐centredness. First, we engage with the late‐modern history of the concept of (...) QoL and the act of assessing and measuring it. Working with the historical method of genealogy, we describe the development of both QoL assessments and PRO measures (PROMs) within healthcare by accounting for the contextual conditions for their possibility. In this way, the historical and philosophical underpinnings of these measurement practices are highlighted. We move on to analyse theoretical and philosophical underpinnings regarding the use of PROMs and QoL assessments in clinical practice, as demonstrated in review studies thereof. Finally, we offer a critical analysis regarding the state of theory in the literature and conclude that, although improved person‐centredness is an implied driver of QoL assessments and PROMs in clinical practice, enhanced theoretical underpinning of the development of QoL assessments is called for. (shrink)

Person‐centred care, with its central focus on the patient in partnership with healthcare practitioners, is considered to be the contemporary gold standard of care. This type of care implies effective communication from and by both the patient and the healthcare practitioner. This is often problematic in the case of the paediatric population, because of the many communicative challenges that may arise due to the child's developmental level, illness and distress, linguistic competency and disabilities. The principle of universal design put forth (...) in conventions and legislation means that the design of products and services should be usable by all people, to the greatest extent possible. Augmentative and alternative communication encompasses strategies, for example pictures and apps, that are typically used with people with communication disability. In this position paper, we argue for the universal use of augmentative and alternative communication to support person‐centred communication and care for children, regardless of age or potential disability. Clinical examples are shared from three different paediatric care settings where pictorial supports were applied universally. Interviews were conducted with children and adolescents (with and without disabilities), parents and healthcare practitioners, and the principles of universal design were used as a framework to demonstrate how person‐centred communication is supported in paediatric care. (shrink)

Palliative care is provided at a certain timepoint, both in a person's life and in a societal context. What is considered to be a good death can therefore vary over time depending on prevailing social values and norms, and the person's own view and interpretation of life. This means that there are many interpretations of what a good death can actually mean for an individual. On a more general level, research in palliative care shows that individuals have basic common needs, (...) for example physical, mental, social and spiritual well‐being. Therefore, in today's pluralistic Western society, it becomes important that palliative care is person centred to enable individuals to receive, as far as can be achieved, care that promotes as good a life as possible based on the person's own needs and preferences, and in accordance with evidence and current laws. For many years a research group, consisting nurse researchers together with nurses working in palliative care, has developed a model for person‐centred palliative care, the 6S‐model. The model's central concept is Self‐image, where the starting point is the patient as a person and their own experience of the situation. The other concepts: Self‐determination, Symptom relief, Social relationships, Synthesis and Strategies are all related to the patient's self‐image, and often to each other. The model's development, value base and starting assumptions are reported here, as are examples of how the model is applied in palliative care in Sweden. The model has been, and still is, constantly evolving in a collaboration between researchers and clinically active nurses, and in recent years also with patients and close relatives. (shrink)

Religion and spirituality are integral to the philosophy of palliative care, shaping its approach to spiritual care. This article aims to examine the discourses within palliative care research to illuminate prevailing assumptions regarding spiritual care. Eighteen original articles were analyzed to examine how spiritual care is understood within palliative care. The analysis, informed by Foucault, aimed to identify recurring discourses. The finding reveals that, in palliative care research, spirituality is viewed as enigmatic yet inherently human and natural, assuming that every (...) individual has a spiritual dimension. The analysis points to healthcare professionals being expected to hold certain qualities to put spiritual care into practice. The analysis also reveals that in the analyzed articles, the concept of spiritual care is rooted in a Christian context, with the belief that all individuals possess inherent spirituality or religiosity, a concept often associated with Christian theology. The included articles often utilize theological terms and emphasize a monotheistic viewpoint. Spirituality is articulated as a complex, distinct concept, challenging clear definitions and professional responsibilities. Further, a moral formation of healthcare professionals is described, interpelling and ascribing qualities that healthcare professionals need to provide spiritual care. (shrink)

The aim of this article is to elaborate on how a distinct concept of the person can be implemented within person‐centred care as an ethical configuration of personhood in the tension between the two predominant cultures of knowledge within health care: naturalism and phenomenology. Starting from Paul Ricoeur's ‘personalism of the first, second, and third person’ and his ‘broken’ ontology, open‐ended, incomplete, and imperfect mediations, placed at the precise juncture where reality is divided up into two separate cultures of knowledge, (...) is identified as crucial for what makes us human. Within this context, Ricoeur's distinct ethical configuration of personhood is based on the homology between the linguistic, practical, narrative, and moral determinations of selfhood—articulated as a hermeneutics of the self, without any methodological break. Person‐centred care is thus recognized as an profound ethical approach to health care based on mediations of ‘horizontal’ (teleological) and ‘vertical’ (deontological) readings of an ethical configuration of personhood by the use of practical wisdom. (shrink)

The aim of this study was to explore patients’ experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them which (...) gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well‐being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person‐centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient‐reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients’ voice to be heard and thereby compose a basis for care. (shrink)

Person‐centred care is founded on ethics as a basis for organizing care. In spite of healthcare systems claiming that they have implemented person‐centred care, patients report less satisfaction with care. These contrasting results require clarification of how to practice person‐centred ethics using Paul Ricoeur's ‘Little ethics’, summarized as: ‘aiming for the good life, with and for others in just institutions’. In this ethic Kantian morality is at once subordinate and complementary to Aristotelian ethics because the ethical goal needs to be (...) critically assessed and passed through the examination of the norm in each care situation. This paper presents examples that describes a person‐centred care practice that balance a critical review of care activities based on a conviction of aiming for patients' wellbeing. In contrast to patients' experiences of person‐centred care in real life, research projects have shown that if the clinical performers comprehend and apply the practice of person‐centred ethics, patients report positive outcomes. The implementation of person‐centred care therefore demands that stakeholders and managers enables and requires that healthcare staff study ethics in the same way as studying for example pharmacology is required when handling patients' medicines. (shrink)