Person-centred Palliative Care Research Articles

Connect, care, create: practical framework for physical environment design for person-centred palliative care.

This article aims to explore architectural-rich insights derived from users' experiences within everyday practice in palliative environments and provides a practical framework for healthcare organisations, architects and researchers involved in (re)designing palliative environments for person-centred care. An ethnographic study involving participatory observation was undertaken to gain insight into the influence of palliative environments on the diverse users' subjective experiences. This immersive research took place across multiple palliative environments, encompassing a palliative care unit, a day care centre for palliative care and a hospice located in Belgium. Also, informal conversations and photo-elicitation interviews were conducted with residents, family members, healthcare professionals, volunteers and maintenance staff. Analysing the subjective experiences yielded a practical framework of four architectural atmospheres (proximity, support, engagement, comfort) intended to serve as guiding principles for designing palliative environments. To shape these atmospheres, this article elaborates on 17 spatial aspects and aligns them with real-life experiences of users within palliative environments, thereby enriching and contextualising these insights. This study presents a practical framework encompassing atmospheres, spatial aspects and overarching insights. It is augmented by supplemental material featuring real-life user experiences, all directed towards guiding the design of palliative environments in pursuit of person-centred palliative care. This article advocates for a collaborative, interdisciplinary, holistic design approach that acknowledges these considerations' interconnectedness and considers the users' multiple perspectives. Ultimately, this approach serves as a means of bridging design intentions and actual experiences encountered by users in their real-life contexts to assist healthcare organisations and architects in creating environments for person-centred palliative care.

Fostering nurse-patient relationships in palliative care: An integrative review with narrative synthesis.

Nurse-patient relationships are an integral component of person-centred palliative care. Greater understanding of how nurse-patient relationships are fostered and perceived by patients and nurses can be used to inform nursing practice. To systematically identify and synthesise how nurse-patient relationships are fostered in specialist inpatient palliative care settings, and how nurse-patient relationships were perceived by patients and nurses. Integrative review with narrative synthesis. The review protocol was registered with PROSPERO (CRD42022336148, updated April, 2023). Five electronic databases (PubMed, CINAHL Complete, Medline, Web of Science and PsycINFO) were searched for articles published from their inception to December 2023. Studies were included if they (i) examined nurse and/or patient perspectives and experiences of nurse-patient relationships in specialist inpatient palliative care, (ii) were published in English in a (iii) peer-reviewed journal. The Mixed Methods Appraisal Tool was used to evaluate study quality. Data were synthesised using narrative synthesis. Thirty-four papers from 31 studies were included in this review. Studies were mostly qualitative and were of high methodological quality. Four themes were identified: (a) creating connections; (b) fostering meaningful patient engagement; (c) negotiating choices and (d) building trust. Nurses and patients are invested in the nurse-patient relationship, benefitting when it is positive, therapeutic and both parties are valued partners in the care. Key elements of fostering the nurse-patient relationship in palliative care were revealed, however, the dominance of the nurses' perspectives signifies that the nature and impact of these relationships may not be well understood.

Improving dementia and palliative care through the co-design of an integrated model of care.

A need exists to improve end-of-life care for people with advanced dementia, by integrating available services. Stakeholders on the Central Coast of New South Wales united to co-design an improved model of care that would integrate care across care settings. The aim of this project was to co-design a model of integrated, person-centred palliative care for people with dementia at the end of life. This case study describes seven co-design workshops which took place in 2023 to develop a program logic model. Workshops were run in a hybrid format, with stakeholders attending in person and online. Workshops were attended by an average of 26 stakeholders including people and carers with lived experience of dementia, healthcare workers from hospital and community-based services (public and private), primary care clinicians, and participants from the not-for-profit sector and academia. Stakeholders developed a shared mission and purpose and identified priority areas for improving palliative care for people with advanced dementia. This led to the development of a program logic model, which included components relating to education for people with dementia, carers, and professionals, care coordination and referrals, and regular multidisciplinary case conferences. Feedback on the model from a new audience identified areas for improvement. The stakeholder group participated in a survey to evaluate the effectiveness of the co-design. The survey found that stakeholders were satisfied with the model of care the group developed. This project highlighted the value of adopting a co-design approach with stakeholders to develop a new model of care.

Improving person-centred care for older persons with serious multimorbidity in LMICs.

Few interventions are documented to meet person-centred needs of older people with serious multimorbidity in low- and middle-income countries where access to palliative care is limited. Most of the care in these settings is delivered by primary care health workers. This study reports the development and acceptability testing of a communication skills training and mentorship intervention for primary health care workers in Malawi. This study was conducted at Mangochi District Hospital in the south-eastern region of Malawi. Twelve primary health care workers (four clinical officers and eight nurses) working in the primary care clinics received the intervention. The intervention was designed using modified nominal group technique, informed by stakeholder interviews and a theory of change workshop. Acceptability is reported from thematic analysis of a focus group discussion with primary health care workers who received the intervention using NVivo version 14. Older persons with serious multi-morbidity and their caregivers identified a need for enhanced communication with their healthcare providers. This helped to inform the development of a communication training skills and mentorship intervention package based on the local best practice six-step Ask-Ask-Tell-Ask-Ask-Plan framework. Primary health care workers reported that the intervention supported person-centred communication and improved the quality of holistic assessments, although space, workload and availability of medication limited the implementation of person-centred communication. The Ask-Ask-Tell-Ask-Ask-Plan framework, supported person-centered communication and improved the quality of holistic assessment.Contribution:This intervention offers an affordable, local model for integrating person-centered palliative care in resource-limited primary healthcare settings.

Describing the characteristics and symptom profile of a group of urban patients experiencing socioeconomic inequity and receiving palliative care: a descriptive exploratory analysis.

Individuals experiencing socioeconomic inequity have worse health outcomes and face barriers to palliative and end-of-life care. There is a need to develop palliative care programs tailored to this underserved population. To understand the characteristics and symptom profiles of a group of urban patients experiencing socioeconomic inequity and receiving palliative care. Descriptive exploratory analysis of a patient dataset. The patient dataset was generated through a pilot research study with patients experiencing socioeconomic inequity and life-limiting illness who received a community-based palliative care intervention. The intervention took place over 1 year in the Palliative Care Outreach and Advocacy Team, a community-based urban palliative care clinic in Edmonton, Alberta, Canada, serving persons experiencing socioeconomic inequity. Participants had to be at least 18 years of age, be able to communicate in English, require palliative care for a life-limiting illness, and be able to consent to inclusion in the study. Twenty-five participants were enrolled. Participants predominantly identified as male and Indigenous, experienced poverty and housing instability, and had metastatic cancer. Our participants rated their pain, shortness of breath, and anxiety as more severe than the broader community-based palliative care population in the same city. Most patients died in inpatient hospices (73%). Our analysis provides an in-depth picture of an understudied, underserved population requiring palliative care. Given the higher symptom severity experienced by participants, our analysis highlights the importance of person-centered palliative care. We suggest that socioeconomic inequity should be considered in patients with life-limiting illnesses. Further research is needed to explore palliative care delivery to those facing socioeconomic inequity.

Teaching to prepare undergraduate nursing students for palliative care: nurse educators’ perspectives

BackgroundEducation in palliative care for undergraduate nursing students is important for the competence of general nurses. Newly graduated nurses have reported challenges in coping with their own emotions when encountering dying persons. They express a wish for more education before they graduate, particularly in psychosocial and existential areas, such as having difficult conversations and supporting grieving persons. Despite awareness of the importance of palliative care education for nurses, there is a lack of knowledge on how to effectively convey this knowledge to students. The aim of the present study was to explore how teaching to prepare undergraduate nursing students for palliative care practice is conducted in Sweden.MethodsEducators from 22 Bachelor of Science nursing programmes in Sweden were interviewed about how they conducted palliative care education, with a focus on teaching situations that have been successful or less successful. The interviews were transcribed and analysed using qualitative inductive content analysis.ResultsEducators described that they play a crucial role in preparing undergraduate nursing students to face death and dying and to care for persons at the end of life. In the main theme, “Transforming person-centred palliative care into student-centred education”, educators described how they incorporated the person-centred palliative approach into their teaching. Educators used a dynamic style of teaching where they let the students’ stories form the basis in a co-constructed learning process. The educators trusted the students to be active partners in their own learning but at the same time they were prepared to use their expert knowledge and guide the students when necessary. Discussion and reflection in small groups was described as being essential for the students to achieve a deeper understanding of palliative care and to process personal emotions related to encountering dying and grieving individuals.ConclusionsThis study suggests that palliative care education for undergraduate nursing students benefits from teaching in smaller groups with room for discussion and reflection. Furthermore, gains are described relating to educators taking the role of facilitators rather than traditional lecturers, being flexible and ready to address students’ emotions. Educators also draw on their experiences as palliative care nurses in their teaching practices.

Providing person-centered palliative care in conflict-affected populations in the Middle East: What matters to patients with advanced cancer and families including refugees?

Universal health coverage highlights palliative care as an essential component of health services. However, it is unclear what constitutes person-centered care in populations affected by conflict, as they may have specific concerns in the dimensions of physical, emotional, social, and spiritual wellbeing. This study aimed to identify what matters to patients with advanced cancer and family caregivers in Jordan including refugees, to inform appropriate person-centered assessment and palliative care in conflict-affected populations. Cross-sectional face-to-face, semi-structured interviews were conducted at two sites in Amman. Adult patients with advanced cancer and family caregivers were purposively sampled to maximize diversity and representation. Interviews were digitally audio recorded, anonymized, and transcribed verbatim for thematic analysis. Four themes were generated from 50 patients (22 refugees; 28 Jordanians) and 20 caregivers (7 refugees; 13 Jordanians) (1). Information, communication, and decision-making. Truth-telling and full disclosure from clinicians was valued, and participants expressed concerns that information was not shared in case patients would disengage with treatment. (2) Priorities and concerns for care and support. Participants' top priority remained cure and recovery (which was viewed as possible). Other priorities included returning to their "normal" life and their "own" country, and to continue contributing to their family. (3) Role of spirituality and Islam. Most participants had strong faith in God and felt that having faith could comfort them. For refugees whose social network was fractured due to being away from home country, prayer and Quran reading became particularly important. (4) Unmet support needs of family caregivers. Family caregivers were affected physically and emotionally by worrying about and caring for the patients. They needed support and training, but often could not access this. Truth-telling is highly valued and essential to achieving person-centered care and informed decision-making. This study also reveals specific concerns in conflict-affected populations, reflecting the experience of prior losses and fracturing of existing social networks and support. The role of religion is crucial in supporting refugee communities, and consideration should be paid to the needs of patients and caregivers when caring for a patient at home without access to their communities of origin and the support they accessed.

Existential aspects documented in older people’s patient records in the context of specialized palliative care: a retrospective review

BackgroundDocumentation of older people’s end-of-life care should cover the care given and provide an overview of their entire situation. Older people approaching the end of life often have complex symptoms, live with bodily losses, and face an unknown future in which existential aspects come to the forefront. Knowledge of the existential aspects recorded in palliative care documentation is sparse and merits improvement. This knowledge is relevant to the development of more holistic documentation and is necessary in order to promote reflection on and discussion of documentation of the sensitive existential considerations arising in palliative care. The aim of this study was to describe the documentation of existential aspects in the patient records of older people receiving specialized palliative care.MethodsData were obtained from a retrospective review of the free-text notes in 84 records of randomly selected patients aged ≥75 years enrolled in specialized palliative care units who died in 2017. The notes were analysed using an inductive qualitative content analysis.ResultsThe notes documented existential aspects in terms of connotations of well-being and ill-being. Documented existential aspects were related to the patients’ autonomy concerning loss of freedom and self-determination, social connectedness concerning loneliness and communion, emotional state concerning anxiety and inner peace, and state of being concerning despair and hope. The notes on existential aspects were, however, not recorded in a structured way and no care plans related to existential aspects were found.ConclusionsExistential aspects concerning both ill-being and well-being were sparsely and unsystematically documented in older people’s patient records, but when notes were extracted from these records and analysed, patterns became evident. Existential aspects form an important basis for delivering person-centred palliative care. There is a need to develop structured documentation concerning existential aspects; otherwise, patients’ thoughts and concerns may remain unknown to healthcare professionals.

Impact of COVID-19 primary healthcare service restrictions on patients with chronic obstructive pulmonary disease in Cape Town, South Africa.

Patients with chronic obstructive pulmonary disease (COPD) typically experience multidimensional symptoms throughout the course of their disease, with burdensome physical symptoms, social isolation, and additional psychological suffering. COVID-19 lockdown resulted in restrictions on chronic care delivery at primary healthcare (PHC) facilities, and it is not known what the care experiences of patients with COPD were during this time. To describe patient experiences of the impact of the lockdown on their needs and their experiences of the primary care received for their COPD. The data reported in this paper are from a cohort of 49 patients with COPD receiving primary care, recruited in February and March 2020, before recruitment was paused for COVID-19 lockdown, for a feasibility stepped-wedge hybrid type II design randomised controlled trial of integrated person-centred palliative care in primary care for patients with COPD in Cape Town, South Africa. Data are open-text responses from participants who responded to a single question on a validated measure of primary care consultation empathy (CARE), and describe patient experiences of the impact of the lockdown on the primary care received for their COPD, prior to crossover to trial intervention. Thirty-two patients with COPD gave between 1 and 9 responses each to the open-ended question between March and December 2020. The average age of the participants was 58.6 years, and 53.1% (n=17) were female. Inductive analysis of the open-text data identified four main themes. Participants described decreased access to chronic care and a desire for more person-centred care in interactions with healthcare professionals. The socioeconomic ramifications of the COVID-19 lockdown added to the burden they experienced. The COVID-19 lockdown PHC service restrictions caused a disruption to the continuity of care for patients with COPD, with associated worry, anxiety and disappointment. Medication access was largely supported by the home delivery of chronic medication. We suggest that there are opportunities for providing more sustained support for patients with COPD through referrals to community health workers, and also through telephonic patient follow-up by primary care teams.

Delivering person-centred palliative care in long-term care settings: is humanism a quality of health-care employees or their organisations?

Abstract Reflecting on sustained calls for patient-centredness and culture change in long-term care, we evaluated the relative importance of personal and organisational predictors of palliative care, hypothesising the former as weaker predictors than the latter. Health-care employees (N = 184) from four Canadian long-term care homes completed a survey of person-centred care, self-efficacy, employee wellbeing and occupational characteristics. Using backward stepwise regression models, we examined the relative contributions of these variables to person-centred palliative care. Specifically, blocks of variables representing personal, organisational and occupational characteristics; palliative care self-efficacy; and employee wellbeing were simultaneously regressed on variables representing aspects of person-centred care. The change in R2 associated with the removal of each block was examined to determine each block's overall contribution to the model. We found that occupational characteristics (involvement in care planning), employee wellbeing (compassion satisfaction) and self-efficacy were reliably associated with person-centred palliative care (p < 0.05). Facility size was not associated, and facility profit status was less consistently associated. Demographic characteristics (gender, work experience, education level) and some aspects of employee wellbeing (burnout, secondary trauma) were also not reliably associated. Overall, these results raise the possibility that humanistic care is less related to intrinsic characteristics of employees, and more related to workplace factors, or to personal qualities that can be cultivated in the workplace, including meaningful role engagement, compassion and self-efficacy.

Is There a Role for Palliative Services and Supportive Care in Managing Advanced Penile Cancer?

We aim to review the benefits of palliative care, describe why a palliative approach to care is needed for patients with advanced penile squamous cell carcinoma and propose ways in which oncology nurses can improve access to and provision of palliative care. A review of the literature was performed and identified a range of randomized trials and systematic reviews regarding the benefits of palliative care in this patient group. Cohort studies of patients with penile cancer were used to describe the psychosocial and physical disease burden of penile cancer. Throughout each phase of penile cancer and its treatment, oncology nurses can engage in care that goes beyond cancer-directed treatments to address the whole person, thereby improving quality of life by delivering person-centered palliative care in line with individual needs. Oncology nurses are in key positions to explore many concerns that patients with penile cancer have for themselves or their caregivers. Through speaking directly with patients and caregivers, oncology nurses can uncover sources of distress, assess for unmet needs, and advocate for improved primary palliative care or early referral to specialty palliative care teams.

Development of a national quality framework for palliative care in a mixed generalist and specialist care model: A whole-sector approach and a modified Delphi technique.

In a predominantly biomedical healthcare model focused on cure, providing optimal, person-centred palliative care is challenging. The general public, patients, and healthcare professionals are often unaware of palliative care's benefits. Poor interdisciplinary teamwork and limited communication combined with a lack of early identification of patients with palliative care needs contribute to sub-optimal palliative care provision. We aimed to develop a national quality framework to improve availability and access to high-quality palliative care in a mixed generalist-specialist palliative care model. We hypothesised that a whole-sector approach and a modified Delphi technique would be suitable to reach this aim. Analogous to the international AGREE guideline criteria and employing a whole-sector approach, an expert panel comprising mandated representatives for patients and their families, various healthcare associations, and health insurers answered the main question: 'What are the elements defining high-quality palliative care in the Netherlands?'. For constructing the quality framework, a bottleneck analysis of palliative care provision and a literature review were conducted. Six core documents were used in a modified Delphi technique to build the framework with the expert panel, while stakeholder organisations were involved and informed in round-table discussions. In the entire process, preparing and building relationships took one year and surveying, convening, discussing content, consulting peers, and obtaining final consent from all stakeholders took 18 months. A quality framework, including a glossary of terms, endorsed by organisations representing patients and their families, general practitioners, elderly care physicians, medical specialists, nurses, social workers, psychologists, spiritual caregivers, and health insurers was developed and annexed with a summary for patients and families. We successfully developed a national consensus-based patient-centred quality framework for high-quality palliative care in a mixed generalist-specialist palliative care model. A whole-sector approach and a modified Delphi technique are feasible structures to achieve this aim. The process we reported may guide other countries in their initiatives to enhance palliative care.

Community-based short-term integrated palliative and supportive care reduces symptom distress for older people with chronic noncancer conditions compared with usual care: A randomised controlled single-blind mixed method trial

BackgroundGlobally, a rising number of people live into advanced age and die with multimorbidity and frailty. Palliative care is advocated as a person-centred approach to reduce health-related suffering and promote quality of life. However, no evidence-based interventions exist to deliver community-based palliative care for this population. AimTo evaluate the impact of the short-term integrated palliative and supportive care intervention for older people living with chronic noncancer conditions and frailty on clinical and economic outcomes and perceptions of care. DesignSingle-blind trial with random block assignment to usual care or the intervention and usual care. The intervention comprised integrated person-centred palliative care delivered by multidisciplinary palliative care teams working with general practitioners and community nurses. Main outcome was change in five key palliative care symptoms from baseline to 12-weeks. Data analysis used intention to treat and complete cases to examine the mean difference in change scores and effect size between the trial arms. Economic evaluation used cost-effectiveness planes and qualitative interviews explored perceptions of the intervention. Setting/participantsFour National Health Service general practices in England with recruitment of patients aged ≥75 years, with moderate to severe frailty, chronic noncancer condition(s) and ≥2 symptoms or concerns, and family caregivers when available. Results50 patients were randomly assigned to receive usual care (n = 26, mean age 86.0 years) or the intervention and usual care (n = 24, mean age 85.3 years), and 26 caregivers (control n = 16, mean age 77.0 years; intervention n = 10, mean age 77.3 years). Participants lived at home (n = 48) or care home (n = 2). Complete case analysis (n = 48) on the main outcome showed reduced symptom distress between the intervention compared with usual care (mean difference -1.20, 95% confidence interval -2.37 to -0.027) and medium effect size (omega squared = 0.071). Symptom distress reduced with decreased costs from the intervention compared with usual care, demonstrating cost-effectiveness. Patient (n = 19) and caregiver (n = 9) interviews generated themes about the intervention of ‘Little things make a big difference’ with optimal management of symptoms and ‘Care beyond medicines’ of psychosocial support to accommodate decline and maintain independence. ConclusionsThis palliative and supportive care intervention is an effective and cost-effective approach to reduce symptom distress for older people severely affected by chronic noncancer conditions. It is a clinically effective way to integrate specialist palliative care with primary and community care for older people with chronic conditions. Further research is indicated to examine its implementation more widely for people at home and in care homes.Trial registration: Controlled-Trials.com ISRCTN 45837097Tweetable abstract: Specialist palliative care integrated with district nurses and GPs is cost-effective to reduce symptom distress for older people severely affected by chronic conditions.

Healthcare professionals’ perceptions of palliative care quality in a combined acute oncology-palliative care unit: A cross-sectional study

It is a challenge to ensure high-quality palliative care. The aim was to investigate the perceptions of health care professionals (HCPs) working in a combined acute oncology-palliative care unit regarding the quality of the palliative care received by the patients and how important the care was to the patients. A Swedish total-survey cross-sectional study including 41 HCPs (54% response rate) was conducted with the 52 items Quality from the Patient’s Perspective – Palliative Care instrument, answered in two different ways: as actual care received and subjective importance. The STROBE-checklist was used. The areas for improvements were related to symptom relief, spiritual and existential needs, information, patient participation, continuity of care, care planning, cooperation and coordination of care, as subjective importance scores were higher than corresponding scores for care received ( p ≤ .025). Providing high-quality palliative care alongside curative treatments for cancer patients is known to be challenging and could explain the results in this study. Implementation of a person-centred palliative care model based on the hospice philosophy could be a solution.

The dying patient: taboo, controversy and missing terms of reference for designers—an architectural perspective

Contemporary society has grown seemingly detached from the realities of growing old and subsequently, dying. A consequence, perhaps, of death becoming increasingly overmedicalised, nearly one in two UK nationals die...

The 6S-model for person-centred palliative care: A theoretical framework.

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.

A Call for North Carolina to Surround the Seriously Ill and Caregivers with Interprofessional Collaborative Teams

As the population ages, the number of people living with serious illness is increasing and the demand for quality, timely, person-centered palliative care is growing. We need specialized, trained health professionals working in collaborative teams to answer this call. It is upon health care leaders and policymakers to jointly design, build, and sustain a workforce to ensure all North Carolinians have access to care during a serious illness or end of life.

Development of a Short Form of the Questionnaire Quality from the Patient's Perspective for Palliative Care (QPP-PC).

PurposePatients’ views on quality are important to improve person-centered palliative care. There is a lack of short, validated instruments incorporating patients’ perspectives of the multidisciplinary palliative care services. The aim of this study was to develop a short form of the instrument Quality from the Patient’s Perspective for Palliative Care (QPP-PC) and to describe and compare patients’ perceptions of the subjective importance (SI) of care aspects and their perceptions of care received (PR).MethodsA cross-sectional study was conducted in Norway including 128 patients (67% response rate) in four palliative care contexts. The QPP-PC, based on a person-centered theoretical framework, incorporating the multidisciplinary palliative care, comprises 4 dimensions; medical–technical competence, physical–technical conditions, identity-oriented approach and sociocultural atmosphere, 12 factors (49 items) and 3 single items. The instrument measures SI and PR. Development of the short form of the QPP-PC was inspired by previously published methodological guidelines. Descriptive statistics, paired t-tests, confirmatory factor analysis and Cronbach’s α were used.ResultsThe short form of QPP-PC consists of 4 dimensions, 20 items and 4 single items. Psychometric evaluation showed a root-mean-square error of approximation (RMSEA) value of 0.109 (SI). Cronbach’s α values ranged between 0.64 and 0.85 for most dimensions on SI scales. Scores on SI and PR scales were mostly high. Significantly higher scores for SI than PR were present for the identity-oriented approach dimension, especially on items about information.ConclusionRMSEA value was slightly above the recommended level. Cronbach’s α was acceptable for most dimensions. The short form of QPP-PC shows promising results and may be used with caution as an indicator of person-centered patient-reported experience measures evaluating the multidisciplinary palliative care for patients in a late palliative phase. However, the short version of QPP-PC needs to be further validated using new samples of patients.

Elements of assisted bodily care: Ethical aspects.

Many frail older persons who die in Swedish nursing homes need assisted bodily care. They must surrender their bodies to the authority of assistant nurses, which may affect their autonomy and dignity of identity. While assistant nurses claim to support older persons' wishes, older persons claim they have to adapt to assistant nurses' routines. The provider-receiver incongruence revealed here warrants investigation. To describe the elements of assisted bodily care, as performed in a nursing home. Data were collected through thirty-nine observations of assisted bodily care, analyzed with qualitative content analysis. Seventeen older persons and twenty-two assistant nurses from a Swedish nursing home. The research was conducted in line with the Declaration of Helsinki, further approved by the regional ethics committee. Findings show that assisted bodily care consists of assistant nurses' practical work, performed at a high tempo. Assistant nurses still attempt to adapt this work to the older persons' wishes for self-determination, taking into account their day-to-day state of health. In spite of time pressure and occasional interruptions, there is room for consideration and affection in assisted bodily care. Assistant nurses try to promote older persons' dignity of identity, but sometimes fail, possibly due to lack of time. They nevertheless seem to know the older persons well enough to adapt the assisted bodily care according to their preferences and to support self-determination. This indicates that openness to older persons' lifeworlds may be more important than the amount of time available. Nursing home contexts might benefit from adopting a person-centered palliative care perspective, highlighting the value of relationships and shared decision-making. If so, older persons and assisted nurses could agree on practices and goals in assisted bodily care beforehand. Such routines may be time-saving and beneficial to all.

The ethical imperative to relieve suffering for people with tuberculosis by ensuring access to palliative care.

Patients diagnosed with tuberculosis (TB) continue to experience clinical uncertainty and high mortality and to bear a high burden of symptoms and other concerns. Additional concerns may be family support needs and stigma, particularly the latter, as TB and human immunodeficiency virus (HIV) coinfection are common. Human rights covenants, global health policy and the End TB Strategy all recommend palliative care as an essential component of care services. As established in the resolution adopted by the World Health Assembly (WHA) on "Strengthening of palliative care as a component of comprehensive care throughout the life course", there is a "need for palliative care across disease groups (non-communicable diseases, and infectious diseases, including HIV and multidrug-resistant tuberculosis), and across all age groups". We address the ethical imperative to respect the dignity and fundamental rights of people with TB by providing palliative care. We review the evidence for the need for person-centred palliative care and highlight novel models that utilise the skills and training functions of specialist palliative care to achieve better care. We outline simple recommendations for the delivery of specialist and generalist palliative care, offer suggestions on how to ensure optimal coverage by enabling access to appropriate good-quality palliative care at all points of the health system, including alongside treatment. Finally, we set out the current priorities for research and policy to ensure that quality care is delivered to all who need it irrespective of treatment outcome, to minimise distress and to optimise engagement in treatment and care.