Disease-specific stem cell therapies, created from induced pluripotent stem cell lines containing the genetic defects responsible for a particular disease, have the potential to revolutionize the treatment of refractory chronic diseases. Given their capacity to differentiate into any human cell type, these cell lines might be reprogrammed to correct a disease-causing genetic defect in any tissue or organ, in addition to offering a more clinically realistic model for testing new drugs and studying disease mechanisms. Clinical translation of these therapies provides (...) an opportunity to design a more systematic, accessible and patient-influenced model for the delivery of medically innovative treatments to chronically ill patients. (shrink)

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease, involving dialysis or conservative care. Shared decision-making is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient’s values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further implementation. A shift (...) from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient’s perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient’s relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. (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)

This paper provides a commentary on “Vascular amputees: A study in disappointment” and its significance in the development of the disability rights movement, as well as the movements for values-based medicine and person-centred health and social care.

Artificial devices that functionally replace internal organs are likely to be more common in the future. They are becoming more and more technologically feasible, increases in chronic diseases that can compromise various organs are anticipated, and donor organs will remain necessarily limited. More people in the future may have bodies that are partly nonorganic. How might artificial organs affect how we experience and conceptualize our bodies and how we understand the relation of the body to the experiencing, acting subject, or (...) self? Here, I focus on artificial heart devices (AHDs), including total artificial hearts (TAHs) and ventricular assist devices (VADs). While other devices, such as pacemakers and implantable cardiac defibrillators, assist the heart, I focus on devices that replace rather than assist organic function. AHDs, I argue, may have two opposing effects. On the one hand, having an AHD could alter experience, seemingly confirming that selves are shaped by the specifics of embodiment. On the other hand, AHDs are likely to encourage people to regard bodies as machines that are separable from the self. AHDs thus both confirm and undermine a body-self dualism. People with these devices may come to regard their bodies as machinelike even while having an artificial part alters their subjective experience. (shrink)

Communicating an unfavourable prognosis while maintaining patient hope represents a critical challenge for healthcare professionals. Duty requires respect for the right to patient autonomy while at the same time not doing harm by causing hopelessness and demoralisation. In some cases, the need for therapeutic privilege is discussed. The primary objectives of this study were to explore HPs’ perceptions of hope in the prognosis communication and investigate how they interpret and operationalise key ethical principles. Sixteen qualitative semistructured interviews with HPs from (...) different positions and experience, including doctors and nurses in four different departments, were conducted in the Ticino Cantonal Hospital, Switzerland. The interviews were recorded, transcribed verbatim and analysed using thematic analysis. HPs defined prognosis and patient hope as interdependent concepts related to future perspectives for subjective quality of life. Two main factors allow HPs to maximise the benefits and minimise the harm of their communication: respecting the patient’s timing and sharing the patient’s wishes. Time is required to reframe needs and expectations. Furthermore, communication needs to be shared by HPs, patients and their relatives to build common awareness and promote a person-centred approach to prognosis. In this process, interprofessional collaboration is key: doctors and nurses are complementary and can together guarantee that patients and relatives receive information in the most appropriate form when they need it. Organisational aspects and the HPs’ emotional difficulties, particularly in coping with their own despair, are barriers to effective communication that need further investigation. (shrink)

Ensuring patient participation in healthcare decision making remains a difficult task. Factors such as a lack of time in the consultation, medical objectivation, or the difficulties of translating individual patient experience into the treatment plan have been shown to limit patient contributions. Little research attention has focused however on how emotions experienced by both the patient and the healthcare provider may affect the ability of the patient to participate. In this research, patient’s and healthcare provider’s emotions were identified and analysed. (...) The research method showed fear as a prominent emotion experienced. This included patient’s fears both inside and outside the consultation, as well as the healthcare provider’s fears in their professional practice. Using Martha Nussbaum’s cognitive-evaluative theory of emotions as an additional means of analysis, the research looked at what this emotion could show about the importance of the object of this fear to the person’s eudaimonia (flourishing). At the end of the article, several solutions were proposed to help mitigate this fear to keep it from becoming a destructive force in the healthcare provider—patient relationship. (shrink)

This article illustrates the less-acknowledged social construction of the concept of ‘incompetency’ and draws attention to the moral concerns it raises in health care encounters in the south Indian city of Chennai. Based on data drawn from qualitative research, this study suggests that surgeons subjectively construct the idea of incompetency through their understanding of the perceived circumstantial characteristics of the patients and family members they serve. The findings indicate that surgeons often underestimate patients and family members’ capacity based on constructed (...) assessments, which leads to paternalistic practice. In this article, I illustrate how these assessments influence the surgeons’ practices and provide the moral and practical justifications for their actions. The constructed knowledge becomes a source for drawing normative justification for surgeons’ actions and, in conjunction with socially enforced power relationships, results in patients and family members to be on the receiving end of disrespectful attitudes. Based on the data analysis and by drawing on philosophical analysis, I emphasize the need to focus on ‘respect for persons,’ to rethink the framework of ‘capacity,’ and to practice respect in hospital settings. (shrink)

In this paper, I examine the rhetoric employed by court judgements, with a particular emphasis on the narrative construct of the ‘passive patient’. This construction advances and reinforces paternalistic values, which have scant regard for the patients’ preferences, values, or choices within the legal context. Further, I critique the rhetoric employed and argue that the use of this rhetoric is the basis for a precedent that limits the understanding and respect of patients. Through this paper, I present the contemporary use (...) of the ‘passive patient’ construct in the context of the Indian legal system and describe how such constructions have become a source of normative justification for legal reasoning that jeopardizes the patient’s agency. I argue for the primacy of ‘respect for persons’ within Indian law and the need to treat each patient as a person who has agency, preferences, and values during clinical interactions. I conclude by suggesting that laws that adopt narratives that acknowledging the significance of patient engagement and the relevance of effective communication during clinical encounters would help cultivate a culture of patient-centred care, by moving beyond the rhetoric of ‘passive patient’ and the ‘health/choice’ dichotomy. (shrink)

The idea that healthcare should become more person-centred is extremely influential. By using recent English policy developments as a case study, this article aims to critically analyse an important element of person-centred care, namely, the belief that to treat patients as persons is to think that care should be ‘co-produced’ by formal healthcare providers and patients together with unpaid carers and voluntary organizations. I draw on insights from political philosophy to highlight overlooked tensions between co-production and values like equality and (...) liberty. Regarding equality, I argue that co-production compounds both problems of gender inequality in the distribution of care labour and the challenges associated with securing equal access to care. Turning to liberty, I identify important commonalities between co-production and republicanism in political philosophy, given their shared insistence on common citizens’ civic virtue. Then, I use against co-production some liberal arguments against republicanism, to highlight a problem of over-demandingness. In bringing my argument to a close, however, I wish to caution against hastily rejecting co-production as a policy programme. (shrink)

Although a widely used concept in health care, person‐centred care remains somewhat ambiguous. In the field of palliative care, person‐centred care is considered a historically distinct ideal and yet there continues to be a dearth of conceptual clarity. Person‐centred care is also challenged by the pull of standardization that characterizes much of health service delivery. The conceptual ambiguity becomes especially problematic in contemporary pluralistic societies, particularly in the light of continued inequities in healthcare access and disparities in health outcomes. Our (...) aim was to explicate premises and underlying assumptions regarding person‐centred care in the context of palliative care with an attempt to bridge the apparently competing agendas of individualization versus standardization, and individuals versus populations. By positioning person‐centredness in relation to the hermeneutics of the self according to Paul Ricœur, dialectics between individualization and standardization, and between individuals and populations were constructed. The competing agendas were related in a dialectic manner in the way that population health is of importance for the individual, and standardization is of importance for the population. The analysis suggests that person‐centred care is an ethical stance, which gives prominence to both suffering and capability of the individual as a person. The dialectic analysis points towards the importance of extending person‐centred care to encompass population and societal perspectives and thereby avoiding a problematic tendency of affiliating person‐centred care with exclusively individualistic perspectives. Considerations for person‐centred palliative care on micro‐, meso‐ and macrolevels conclude the paper. (shrink)

This article addresses how health professionals should monitor and safeguard their patients’ ability to participate in making clinical decisions and making subsequent decisions regarding the implementation of their treatment plan. Patient participation in clinical decision-making is essential, e.g. in self-care, where patients are responsible for most ongoing care. We argue that one common, fact-oriented patient education strategy may in practice easily tend to take a destructive form that we call error trawling. Illustrating with empirical findings from a video study of (...) consultations between clinicians and adolescent patients with diabetes, we argue on independent grounds that this strategy not only risks to overlook significant weaknesses in patient decision competence, but also to undermine patient capacity for decision-making and implementing care. In effect, this strategy for clinically monitoring and addressing the problem of fragile decision-making capacity brings hazards in need of address. We clo... (shrink)

In contrast to standardized guidelines, personalized medicine and person centered care are two notions that have recently developed and are aspiring for more individualized health care for each single patient. While having a similar drive toward individualized care, their sources are markedly different. While personalized medicine stems from a biomedical framework, person centered care originates from a caring perspective, and a wish for a more holistic view of patients. It is unclear to what extent these two concepts can be combined (...) or if they conflict at fundamental or pragmatic levels. This paper reviews existing literature in both medicine and related philosophy to analyze closer the meaning of the two notions, and to explore the extent to which they overlap or oppose each other, in theory or in practice, in particular regarding ethical assumptions and their respective practical implications. (shrink)