Needs for end‐of‐life care by home care nurses among non‐cancer patients in Korea and Japan

The purpose of this study was to undertake a comprehensive assessment of each stage of the end‐of‐life process and the home care nursing needs of non‐cancer patients. The total number of eligible patients was 117 in Korea and 121 in Japan, aged ≥ 40, receiving continuous home care nursing throughout the beginning, stable, and at final death stages and ultimately dying at home. The need for the ‘management of physical symptoms’ increased as patients progressed through the end‐of‐life stages to death. In both countries, the needs for ‘loss and grief care’ and ‘coordination among care team members’ were significantly higher in the stable stage than in the beginning or final death stages. Further research is needed to develop tailored nursing care programmes that meet the specific needs of patients in each stage of the end‐of‐life care at home.     

Clinical and ethical challenges of palliative sedation therapy. The need for clear guidance and professional competencies

Palliative sedation therapy (PST) has become a frequent practice in end‐of‐life care and advocated in the literature as a less problematic alternative to practices of physician‐assisted dying, such as ending patients' lives on request or assisted suicide 1 . However, in clinical practice, patients, healthcare professionals and other parties involved in decisions about PST are facing numerous clinical and ethical challenges. This perspective aims to analyse important challenges associated with professional decision‐making about PST and to explore the recommendations of guidelines, which have been published in recent years.     

Foucault at the bedside: a critical analysis of empowering a healthy lifestyle

Since quite a few years, philosophy is heading towards the bedside of the patient: the practice of philosophy has stepped out of its ivory tower, it seems, to deal with empirical or practical questions. Apart from the advantages, we should keep in mind the importance of a critical analysis of medical or clinical practice as such. If ethics partakes the clinical stage, it runs the risk only to discuss the how question and to forget the more fundamental what or why questions: what are we doing exactly and why is it good for? Starting from the principle of the empowerment of the patient, we will demonstrate how the discourse on empowerment in health care seems to forget a profound reflection upon this principle as such. By rehearsing some basics from the governmentality theory of Michel Foucault and the actualization of it by Nicolas Rose, we will argue how philosophical investigation in medical‐ethical evolutions such as empowerment of the patient is still needed to understand what is really going on in today's clinical practice.     

“She doesn't want to go to hospital. That's one thing she hates”: Collective performativity in avoidable nursing home to hospital transfers

Older people who live with a combination of conditions experience fluctuations over time, which others may interpret as a need for medical attention. For some nursing home residents, this results in transitions in and out of hospital. Such transfers may be arranged without expectation of improved quality of life, can be associated with significant morbidity and mortality, and may preclude end‐of‐life preferences. Factors affecting avoidable hospitalization for nursing home residents are not well understood. I aim to explore potential drivers, moving beyond deficit explanations relating to funding, training, and resources. I use a framework of analysis that firstly considers medicalization of frailty, as a state of vulnerability that provides focus for others' action. I then draw on Judith Butler's theory of performativity, to explore nursing homes as sites of identity work for staff, residents and families. I consider ways subjectivities can be effected through reiterative practice that is compelled by normative conventions. Trouble may arise when citational practice of health care staff, and performative acquiescence of residents and families, culminates in an inevitability of hospitalization when navigating grey areas of assumed clinical risk. Principles of coproduction could present a disruptive opening, to rework power asymmetries, and move toward aspirations for residents and their relatives to be at the centre of decisions about care.     

Relatives in end-of-life care--part 2: a theory for enabling safety

Aim. To develop a goal‐oriented praxis theory for enabling safety for relatives when an adult or older patient is close to end‐of‐life. Background. This is the second part of a project focusing on the situation and needs of relatives in end‐of‐life care. Our interpretation of the existing corpus of knowledge pertaining to the needs of close relatives in this situation showed the significance of relatives’ need for safety. Method. The theory was developed step‐by‐step, through triangulation of critical review of empirical research in the field, our own clinical experiences from end‐of‐life care, renewed literature searches and theoretical reasoning. Theory. The foundation for the theory is taken from the ethical intention of the philosopher Paul Ricoeur. From this, the theory focuses on relatives in the context of end‐of‐life care with the goal of enabling safety. This is proposed by four aphorisms functioning as safety enablers and these are directed towards the professional's approach and attitude, the relative's concern for the patient, the specific situation for the relative and the patient's end‐of‐life period as a period in the life of the relative. Relevance to clinical practice. Implications for end‐of‐life practice are considered and include aspects for promotion of just institutions in end‐of‐life care, the significance of negotiated partnership in end‐of‐life care, enabling safety for relatives living in existential and practical uncertainty in connection with end‐of‐life care and diversity of relatives’ preferences as they live through this particular period.     

Integration of End‐of‐Life Education into a Community Health Nursing Course

Student nurses and novice nurses report that they received little in their nursing education to adequately prepare them for the death of a patient. The American Association of Colleges of Nursing's (AACN) competencies for end‐of‐life care assert the need for competent nursing care at the time of death. To prepare students to care for dying patients and their families, a hospice clinical experience in a community health nursing course was designed to facilitate the development of competence in caring for adults and children at the end of life. At the end of the semester, the students were able to demonstrate principles of pain and symptom management and to communicate the goals and philosophy of hospice care to dying patients and their families. The students also demonstrated the ability to advocate for individuals at the end of life through the provision of information about hospice care, especially the benefits for timely referral to hospice and palliative care. The incorporation of a clinical experience into a community health nursing course that focuses on end‐of‐life care is an effective approach to teaching both community health concepts and care of dying patients. Such an approach incorporates essential content without adding to already extensive nursing curricula.     

Understanding the challenges of palliative care in everyday clinical practice: an example from a COPD action research project

Palliative care seeks to improve the quality of life for patients suffering from the impact of life‐limiting illnesses. Palliative care encompasses but is more than end‐of‐life care, which is defined as care during the final hours/days/weeks of life. Although palliative care policies increasingly require all healthcare professionals to have at least basic or non‐specialist skills in palliative care, international evidence suggests there are difficulties in realising such policies. This study reports on an action research project aimed at developing respiratory nursing practice to address the palliative care needs of patients with advanced chronic obstructive pulmonary disease (COPD). The findings suggest that interlevel dynamics at individual, team, interdepartmental and organisational levels are an important factor in the capacity of respiratory nurses to embed non‐specialist palliative care in their practice. At best, current efforts to embed palliative care in everyday practice may improve end‐of‐life care in the final hours/days/weeks of life. However, embedding palliative care in everyday practice requires a more fundamental shift in the organisation of care.     

Qualitative observation in a clinical setting: Challenges at end of life

This paper explores the methodological challenges associated with undertaking qualitative observation in the clinical setting at end of life. The authors reflect on their experiences of using non‐participant observation to explore the nursing care delivered to dying patients in acute hospital wards. The challenges of observation as a method, clearly defining the participant group and involving vulnerable populations, such as the dying patients and their families, will be discussed. Consideration is also given to defining and working within the observational field, the researchers' dual roles, cost versus benefit, impact of culture, religion and ethnicity, and the determination of research limits/boundaries, with reflections from the authors' own experiences used to exemplify the issues.     

Perspectives regarding what constitutes a “good death” among Thai nurses: A cross‐sectional study

Palliative care is a crucial component in improving peoples' end‐of‐life period. It is important to understand the wishes of people at the end of life and the perceptions of their healthcare providers regarding these wishes. As nurses play a key role in patient care, in this study we set out to determine nurses' perceptions regarding what constitutes a “good death”, comparing what they thought their older patients would prefer to their own preferences for their own end‐of‐life care. Questionnaires asking about various options of end‐of‐life care were distributed to nurses, and they were asked how they thought older people would respond to each of the questions and what their own preferences would be if they were terminally ill. In total, 656 participants were enrolled and they rated relief from suffering as the most important component, both for themselves and for those in their care. More than 80% of nurses agreed with all of the statements on the questionnaire. However, some of the nurses' preferences for their own end of life differed from those they expected their patients to value.     

Reframing the meaning of life and professional values: A theoretical framework of facilitating professional care for terminally ill patients

Professional values reflect nurses' understanding of how to deliver professional care, which might influence nurses' attitudes and caring behaviors during end‐of‐life care. However, limited research has been conducted to explore nurses' experiences of professional development during end‐of‐life care, and theoretical explanations are scarce about how nurses enact their professional values during the caring process. This study explored the social process of professional values involved in end‐of‐life care in the Chinese cultural context by adopting a constructivist grounded theory approach. Twenty semi‐structured in‐depth interviews with 15 nurses from three hospitals in southeastern China were conducted. A theoretical framework emerged when focusing on the social process of “reframing the meaning of life and professional values” to facilitate professional care for terminally ill patients. Three main categories were sequentially identified as “recognizing the dilemmas when caring for terminally ill patients,” “applying strategies to deal with values conflict,” and “reconstructing values.” This theoretical framework may be applied as a practical framework for equipping nurses with effective strategies to cultivate professional values, including the provision of adequate end‐of‐life knowledge, and a supportive workplace environment.     

What is important for patient centred care? A qualitative study about the perceptions of patients with cancer

Background: This article deals with one of the themes from interviews in a larger qualitative study about cancer patients' perceptions of good caring. It is widely recognized today that patient centred care is important. Patients' values and perceptions must be acknowledged in order to make care evidence based and to meet the demands of quality improvement processes. Aim: The aim was to get insight in patients with cancers' perceptions of the importance of being respected as partners and share control of decisions about interventions and management of their health problems and the reasons behind their wishes. Method: Giorgio's scientific approach to phenomenology was used. Twenty cancer inpatients with various cancer diagnoses at different stages and with different prognoses were interviewed. The sampling was purposive. Ethical issues: Permission to carry out the research was given by a Regional Committee of Research Ethics in Western Norway and the data collection followed the guidelines of the Data Inspectorate of Norway. Main findings: The units of meaning identified could be clustered into three themes with significance for patient centred care from patients' perspectives: (1) empowerment (being respected, listened to, given honest information, being valued); (2) shared decision making about the treatment of the disease (discussing the treatment, but letting the doctor decide in the end); and (3) partnership in nursing care. Conclusion: Health care professionals can practise patient centred care by treating patients with respect, giving honest information, making them feel valued as persons and by inviting them to take part in all decisions about their daily life and care. However, cancer patients' desire to make decisions about their treatments must not be taken for granted. Doctors must find out the extent to which each patient wants to participate and then give the necessary information.     

The Swedish P‐CAT: modification and exploration of psychometric properties of two different versions

The aim of this study was to further investigate the psychometric properties (with focus on construct validity and scale function) of the Swedish version of the Person‐centred Care Assessment Tool (P‐CAT) in a sample consisting of staff working in elderly care units (N = 142). The aim was also to further develop and psychometrically test a modified, noncontext‐specific version of the instrument (mP‐CAT) in a sample consisting of staff working in primary health care or within home care for older people (N = 182). Principal component analysis with varimax rotation initially suggested a three‐factor solution for the P‐CAT, explaining 55.96% of variance. Item 13 solely represented one factor wherefore this solution was rejected. A final 2‐factor solution, without item 13, had a cumulative explained variance of 50.03%. All communalities were satisfactory (>0.3), and alpha values for both first factor (items 1–6, 11) and second factor (items 7–10, 12) were found to be acceptable. Principal component analysis with varimax rotation suggested a final 2‐factor solution for the mP‐CAT explaining 46.15% of the total variance with communalities ranging from 0.263 to 0.712. Cronbach's α for both factors was found to be acceptable (>0.7). This study suggests a 2‐factor structure for the P‐CAT and an exclusion of item 13. The results indicated that the modified noncontext‐specific version, mP‐CAT, seems to be a valid measure. Further psychometric testing of the mP‐CAT is however needed in order to establish the instrument's validity and reliability in various contexts.