Perspectives and attitudes of South African medical professionals towards active euthanasia.

BACKGROUND:  Active euthanasia is a controversial subject both globally and in South Africa. Recent legal cases have kept this topic in the public discourse. Yet, there remains a dearth of quality local research on this issue. This study aimed to explore the views of medical professionals towards active euthanasia to gain a better understanding of this phenomenon in South Africa. METHODS:  A descriptive-interpretive qualitative research design, using semi-structured in-depth interviews of purposively sampled South African medical professionals, was used to collect the data. The data were analysed using an inductive thematic analysis framework, which included familiarisation, coding, summarising, theme development and thematic review, revision and interpretation. RESULTS:  Four general themes, with sub-themes, were identified and inductively analysed: modern medical practice and euthanasia; the problem of suffering in end-of-life care; euthanasia is complex; palliative care in South Africa is poor. Some themes and sub-themes were common to all participants while other themes underscored more diverse views - often because of religious factors. CONCLUSION:  Active euthanasia is a complex and nuanced issue. An understanding of the perceptions and attitudes of medical professionals will contribute to the overall discussion of this phenomenon in ethical, legal, social and political spheres in South Africa. This is of utmost importance given the relevance of this topic in South Africa in the 21st century.Contribution: This study highlights the complex nature of active euthanasia in South Africa among medical professionals while providing a greater understanding of its nuances and the strengths and weaknesses of arguments for or against it.

Caring through uncertainty: a qualitative exploration of older colorectal cancer caregivers' experiences during palliative chemotherapy.

PURPOSE: Despite the increasing research on cancer patient caregivers, there is still a lack of detailed understanding about the experiences of spouses caring for elderly colorectal cancer patients. This study aimed to fill this gap by examining the caregiving experiences of spouses during palliative chemotherapy for elderly Chinese colorectal cancer patients. METHODS: Using a qualitative descriptive design, we recruited spousal caregivers of elderly colorectal cancer patients undergoing palliative chemotherapy. Semistructured interviews were conducted, and thematic analysis was employed to analyse the data. RESULTS: Sixteen caregivers aged 60 to 82 years participated in the interviews. The analysis revealed three main themes: ambivalence, multiple role adaptation to conflicts, and the coexistence of hope and pressure. These themes shed light on the behaviors of older caregivers and the challenges they face, including physical and psychosocial issues associated with aging. CONCLUSION: This study highlights the significant stress and challenges experienced by older caregivers, characterized by intertwined emotions such as anxiety about their spouses' health deterioration, exhaustion from long-term care responsibilities, and anticipation of treatment outcomes.

Caring for terminally Ill patients: the impact on oncologists.

BACKGROUND: Journeying with patients throughout their cancer trajectory and caring for them at the end of life can lead to emotional and moral distress in oncologists, negatively impacting their personal and professional identities. A better understanding of how transitions in care goals affect oncologists can shed light on the challenges faced and the support required. This study explored the impact of care transitions on oncologists' professional identity formation (PIF). METHODS: From September to December 2023, semi-structured interviews were conducted with oncologists in a palliative care center in Singapore. The Ring Theory of Personhood (RToP) was used as a framework to capture the effects of experiences with patients transitioning from curative to palliative care on the oncologists' sense of self and identity. Data were analyzed using both inductive and deductive qualitative analysis. RESULTS: Participants included six female and six male physicians, aged 30 to 53 years (mean 38 years), with an average of 9.75 years of experience as oncologists. The main domains identified were 1) challenges faced in transitioning patients to palliative care, 2) the impact of dealing with dying patients on oncologists, and 3) coping mechanisms. CONCLUSION: Oncologists experience self-doubt and moral distress as they manage transitions in care. The PIF of oncologists can be supported through reflection and introspection, peer support, and interventions to promote self-care - ultimately enabling them to make meaning of their experiences, renew family ties, and reaffirm their commitment to the profession.

Anxiety and Depression in Advanced and Metastatic Lung Cancer Patients-Correlations with Performance Status and Type of Treatment.

Background and Objectives: The treatment of advanced and metastatic lung cancer is multimodal, and it is coordinated by a multidisciplinary team. Anxiety and depression occur frequently in patients with lung cancer, creating considerable discomfort in therapeutic management. At the same time, these psychoemotional symptoms affect the patients' quality of life. Objective: This research seeks to identify correlations both between anxiety and depression and the patients' performance statuses, as well as between anxiety and depression and the type of treatment: radiotherapy, chemotherapy, tyrosine kinase inhibitors (TKI), immunotherapy and palliative care. Materials and Methods: The study evaluated 105 patients with lung cancer from two oncologic centers. Patients were assessed for anxiety and depression using the questionnaire Hospital Anxiety and Depression Scale (HADS). The HADS is a self-report rating scale of 14 items. It measures anxiety and depression, and has two subscales. There are seven items for each subscale. There are 4-point Likert scale ranging from 0 to 3. For each subscale, the score is the sum of the seven items, ranging from 0 to 21. Results: The most powerful correlation with statistical significance was observed between the IT type of treatment (immunotherapy) and the normal level of anxiety, PC = 0.82 (p < 0.001) as well as the normal level of depression. Palliative treatment was correlated with anxiety and depression, both borderline and abnormal. For ECOG 3-4 performance status and abnormal anxiety, respectively, abnormal depression was significantly associated. Also, continuous hospitalization was associated with abnormal anxiety and depression. Conclusions: Early assessments of anxiety and depression are necessary in patients with advanced and metastatic lung cancer, with unfavorable performance status, who have been admitted to continuous hospitalization, and who require palliative care.

Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study.

BACKGROUND: The transition of family caregivers of patients with end-of-Life cancer receiving palliative care from hospital to home is a complex and challenging process. This phase of care involves not only the physical and psychological health of the patient but also the role adaptation and emotional support of the family caregivers. To gain a deeper understanding of the various experiences and feelings during this process, we conducted a qualitative study. METHODS: This study employed a descriptive phenomenological research method. The interviews focused on the specific experiences, challenges faced, support received, and coping strategies of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care. All data were treated with strict confidentiality, and recordings and transcriptions were made with the participants' consent. RESULTS: A total of 15 family caregivers participated. Four main themes and nine sub-themes were identified: complex transition process (anxiety about uncertainty, resistance to transition), discontinuity in care (insufficient discharge guidance, lack of continuous communication mechanisms), post-discharge continuous care needs (need for home care knowledge and skills, social and emotional support, grief counselling and death education), and personal growth and gains (enhanced coping ability, increased psychological resilience). CONCLUSION: Family caregivers face numerous emotional, cognitive, practical, and social support challenges during the transition from hospital to home care. To improve the caregiving experience and quality of life, appropriate training and support should be provided to better meet the caregivers' needs.

Knowledge, attitudes, and barriers: Palliative Care services for women with HIV in resource-limited settings.

BACKGROUND: Women living with HIV (WLWH) in low- middle-income countries (LMICs) face increased mortality risks from comorbidities despite progress in antiretroviral therapy. Palliative care (PC) is vital for these patients, yet its integration in LMICs, such as Nigeria, is suboptimal due to unique challenges. OBJECTIVE: This study investigated the knowledge, perceived barriers, and facilitators influencing PC integration into routine HIV care within healthcare (HC) settings. METHODOLOGY: A cross-sectional survey was conducted among WLWH in twelve HC facilities throughout Nigeria. Data collection involved surveys focused on PC knowledge, attitudes, facilitators, and barriers. Logistic regression analyses were employed to examine the data. RESULTS: This study revealed significant gaps in knowledge and attitudes towards PC among HIV + women at NISA-MIRCs. Over 90% were unaware of PC services, but many saw its potential to offer hope (55%) and improve quality of life (56.5%). The key predictors of PC knowledge included education, occupation, religion, having fewer children, urban residence, type of residence, and having a high income (p < .05). Despite the willingness to access PC, barriers such as negative HC worker attitudes, perceived high cost, and limited decision autonomy could hinder integration. Facilitators included low-cost services, positive HCW attitudes, physician recommendations, and perceived necessity for personal well-being. CONCLUSION: Knowledge gaps, diverse attitudes, and significant barriers highlight the need for targeted PC interventions for WLWH. Tailoring educational programs, addressing cost barriers, and improving healthcare infrastructure are crucial to enhancing PC accessibility and quality. These findings can guide policymakers and HC practitioners toward more effective and inclusive care strategies.

"You close the door, wipe your sadness and put on a smiling face": a qualitative study of the emotional labour of healthcare professionals providing palliative care in nursing homes in France.

BACKGROUND: Palliative care provided to frail and dying older persons in nursing homes results in intense emotions for residents and their relatives as well as for healthcare professionals. In France, scant attention has been given to how nursing home professionals manage their emotions when providing palliative care. This study analysed the emotional demands of providing palliative care in the nursing home context, the emotional strategies used by healthcare professionals to navigate such demands, and how these demands affect their emotional wellbeing. METHODS: This qualitative study used a multiple case study approach. We purposively selected nine nursing homes from three geographical provinces in France with diverse ownership statuses (public, private, associative). Individual interviews and focus group discussions were held with 93 healthcare professionals from various occupational groups employed in the participating nursing homes. Data was collected from April 2021 to September 2022 and was analysed using thematic content analysis. RESULTS: Data revealed that providing palliative care to dying residents within the nursing home context results in intertwined rewarding and exhausting emotional experiences for healthcare professionals. Professionals have to utilize multifaceted emotional strategies to navigate these experiences, including suppressing and modifying emotions and distancing themselves emotionally from residents to protect themselves from emotional suffering. Participants noted a lack of formal space to express emotions. Unrecognized emotional labour undermines the wellbeing of healthcare professionals in nursing homes, whereas acknowledging emotions enhances satisfaction and gives enhanced meaning to their crucial role in resident care. CONCLUSION: Acknowledging emotional labour as an inevitable component of providing palliative care in nursing homes is critical to supporting healthcare professional wellbeing, resilience, and retention, which may ultimately improve the quality of care for dying residents. Ensuring quality care and supporting the emotional wellbeing of nursing home professionals requires an organisational culture that considers emotional expression a collective strength-building resource rather than an individual responsibility, in hopes of shaping a new culture that fully acknowledges their humanity alongside their professional skills. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT04708002; National registration: ID-RCB number: 2020-A01832-37, Registration date: 2020-12-03.

Experiences of patients with advanced chronic diseases and their associates with a structured palliative care nurse visit followed by an interprofessional case conference in primary care - a deductive-inductive content analysis based on qualitative interviews (KOPAL-Study).

BACKGROUND: Chronic, non-malignant diseases (CNMD) like chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) and dementia in advanced stages are very burdensome for patients. Timely palliative care with strong collaboration between general practitioners (GPs) and specialist palliative home care (SPHC) teams can reduce symptom burden, hospitalization rates, hospitalization costs and overall healthcare costs. The KOPAL-study on strengthening interprofessional collaboration for patients with palliative care needs tested the effect of an intervention comprising of a SPHC nurse assessment and an interprofessional case conference. This qualitative evaluative study explores patients', proxies' and their associates' motivation to participate in the KOPAL-study and views on the (benefits of the) intervention. METHODS: We interviewed 13 male and 10 female patients as well as 14 proxies of patients with dementia and six associates of study participants using a semi-structured interview guide. All interviews were digitally recorded, transcribed verbatim and analysed with deductive-inductive qualitative content analysis. RESULTS: Motivation for participation was driven by curiosity, the aim to please the GP or to support research, respectively to help other patients. Few interviewees pointed out to have expected positive effects for themselves. The nurse visit was evaluated very positively. Positive changes concerning health care or quality of life were reported sparsely. Most study participants did not prepare for the SPHC nurse assessment. They had no expectations concerning potential benefits of such an assessment, the interdisciplinary case conference and an early integration of palliative care. The majority of interviewees reported that they did not talk about the nurse visit and the interprofessional case conference with their GPs. CONCLUSION: Our results lead to the conclusion that SPHC nurses can serve as an advocate for the patient and thereby support the patients' autonomy. GPs should actively discuss the results of the interdisciplinary case conference with patients and collaboratively decide on further actions. Patient participation in the interdisciplinary case conference could be another way to increase the effects of the intervention by empowering patients to not just passively receive the intervention. TRIAL REGISTRATION: DRKS00017795 German Clinical Trials Register, 17Nov2021, version 05.

Trainee district nurses' understanding and perceptions of the palliative care key worker role: a qualitative study.

BACKGROUND: The district nurse is identified as a keyworker in community based palliative care. However, a dearth of research exists on trainees' views and understanding of adopting the role upon qualification. AIMS: The aim of this study was to explore the understanding and perceptions of district nurse trainees in relation to the palliative care key worker role. METHODS: Data was gathered via online semi-structured interviews (n=10) and the results were analysed using a thematic model. FINDINGS: The four evolving themes included: understanding of the palliative care key worker role scope and function; the level of preparation for the role; a juggling act and embedding the role in practice. CONCLUSION: The themes highlighted various drivers and barriers that reflect a degree of incongruence with policy and practice. Recommendations to standardise the palliative care key worker role, underpinned by formal preparation and clearly defined responsibilities may enhance future development and implementation of the role.

Effect of logotherapy counseling program on chronic sorrow, dignity, and meaning in life of palliative care patients: a randomized controlled trial.

PURPOSE: Palliative care patients experience chronic sorrow with loss in dignity and meaning in life. Logotherapy is an effective way to cope with loss. This study aimed to evaluate the effect of logotherapy on chronic sorrow, dignity, and meaning in life of palliative care patients. METHODS: This study was conducted with 58 adults hospitalized due to advanced cancer and assigned to either intervention or control group by simple randomization. Data were collected with descriptive information form, Palliative Performance Scale, Patient Dignity Inventory (PDI), Prolonged Grief Disorder Scale-Patient Form (PGDS-PF), and Meaning in Life Questionnaire (MIL) on admission, at the 4th and 8th weeks. The intervention group received eight sessions of logotherapy. The control group received routine care. RESULTS: The mean scores of PGDS-PF (p = 0.01), PDI (p = 0.01), and searched meaning subdimension of MIL (MIL-SM) (p = 0.11) decreased in the intervention group compared to controls, both at the 4th and 8th week evaluation. The mean score of the present meaning subdimension of MIL (MIL-PM) (p = 0.02) increased at the 4th week evaluation but decreased at a non-statistically significant level at the 8th week. The mean scores of PGDS-PF and PDI increased in the control group while MIL-PM and MIL-SM decreased, both at the 4th and 8th week evaluation. CONCLUSIONS: Logotherapy was found effective in decreasing the sorrow and dignity-related distress of palliative care patients, while increasing finding meaning in life. Logotherapy is recommended to be used by palliative care professionals to empower patients. TRIAL REGISTRATION: Clinicaltrials registration number and date: NCT05129059, 19/01/2021.

Multidisciplinary oncology clinicians' experiences delivering spiritual care to patients with cancer and their care partners.

PURPOSE: To understand multidisciplinary healthcare clinicians' meaningful and challenging experiences providing spiritual care to patients with cancer and their care partners. METHODS: Multidisciplinary clinicians who participated in a communication training program supported by the National Cancer Institute or a palliative care training for nurses (N = 257) responded to two, open-ended questions about meaningful and challenging experiences of providing spiritual care. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached. RESULTS: Participants from nursing (68%), social work (22%), and chaplaincy (10%) responded to open-ended survey questions. Three themes related to meaningful experiences of providing spiritual care emerged: building authentic interpersonal connection with patients and care partners; creating intentional space for patients and care partners to inform spiritual care; and actively supporting patients and care partners in their processes with spirituality. Three themes related to challenging experiences of providing spiritual care emerged: contextual factors and clinical circumstances complicate provision of spiritual care; facing barriers to providing high-quality, patient-centered care; and navigating ethical and logistical issues that affect spiritual and other care. CONCLUSION: Clinicians derive meaning from a range of experiences throughout their provision of spiritual care to patients with cancer. However, they also face many challenges in delivering person-centered spiritual care in cancer settings, with some challenges reflecting significant gaps in spiritual care knowledge and training. Findings can guide future training and educational endeavors for multidisciplinary clinicians in the domain of spiritual care.

[Loneliness at the end of life]. / Einsamkeit am Lebensende.

Advanced incurable diseases are often accompanied by numerous losses and burdens as the disease progresses, leading to a loss of autonomy, self-determination, and dignity for those affected, all of which can subsequently promote feelings of loneliness at the end of life. Declining health, increasing symptom burden, loss of social roles, and the fear of death and dying are among the key risk factors for loneliness towards the end of life. In this article, we provide an overview of the different dimensions of loneliness experienced at the end of life. We discuss existential loneliness alongside emotional and social loneliness, explore causes and health implications of loneliness at the end of life, suggest diagnostic tools for assessing loneliness, and finally provide recommendations for addressing emotional, social, and existential loneliness at the end of life. The loneliness of caregivers is also discussed. We suggest that addressing social and emotional loneliness early in the course of a terminal illness is crucial. Palliative, psychological, and spiritual support can strengthen interpersonal relationships, foster a sense of meaning and purpose, and alleviate the adverse effects of loneliness on mental and physical health as well as quality of life. In contrast, existential loneliness is considered an expression of profound emotional maturity and can offer opportunities for inner growth, contributing to a more refined sense of self while reinforcing identity, dignity, and transcendence at the end of life.

Knowledge and training among nursing students regarding the conspiracy of silence in palliative care: A participatory action research.

AIM: To develop and implement specific training based on the knowledge and management of conspiracy of silence among nursing students. BACKGROUND: Conspiracy of silence refers to the concealment of information from a patient on the family's request, under the influence of a paternalistic culture that seeks to protect the patient. DESIGN: Participatory action research. METHODS: Was conducted in the following stages: reconnaissance (focus groups); planning, action and observation (theoretical sessions); and reflection (analysis of care plans). The focus group consisted of six fourth year and eight second-year students. The intervention was conducted with 42 s-year students and a total of 93 s-year students participated in the resolution of the clinical case. The study was conducted between October 2022 and June 2023 at the Faculty of Nursing, University of Valencia. For data analysis, the process described by Carrillo et al. (2011) was followed, involving coding and the creation of categories and subcategories. RESULTS: The focus group deficiencies were detected in the students' learning of palliative care competence, breaking bad news and the conspiracy of silence (reconnaissance stage). Therefore, an intervention was conducted to reinforce these knowledge areas, specifically addressing the conspiracy of silence (planning, action and observation stages). The resolution of the case showed how students with training approached the situation more comprehensively, including the family and proposed activities that were consistent with managing the situation (reflection stage). CONCLUSIONS: An active feedback process was successfully established, where the students' feedback helped create specific training on oncological palliative care and provided the students with tools to manage the conspiracy of silence. The results underscore the importance of providing students with training in palliative care and managing conspiracy of silence, through therapeutic communication training, active training or enhancing emotional intelligence. This training is essential for cultivating the attitudes and skills required to deliver high-quality palliative care.

Flourishing at the end of life.

Flourishing is an increasingly common construct employed in the study of human wellbeing. But its appropriateness as a framework of wellbeing at certain stages of life is contested. In this paper, we consider to what extent it is possible for someone to flourish at the end of life. People with terminal illness often experience significant and protracted pain and suffering especially when they opt for treatments that prolong life. Certain aspects of human goods, however, that are plausibly constitutive of flourishing-such as meaning and purpose, deep personal relationships, and character and virtue-can be uniquely realised when life is ending. We argue that there is a qualified sense in which one can flourish at the end of life but that one must make important modifications to the criteria implicit in conventional conceptions of flourishing. We close with a discussion of the empirical assessment of wellbeing at the end of life and explore the possibility of introducing a flourishing measure in palliative care practice.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. RESEARCH DESIGN AND OBJECTIVE: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. FINDINGS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. DISCUSSION AND IMPLICATIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PATIENT OR PUBLIC CONTRIBUTION: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

The influence of care home registration type and size on senior care leader's confidence to provide palliative and end-of-life care: an explanatory sequential mixed methods study.

BACKGROUND: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. AIM: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. DESIGN: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. SETTING/PARTICIPANTS: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. RESULTS: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59-4.97, p = 0.33; large - aOR 0.65, 95% CI 0.18-2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. CONCLUSION: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes.

Bittersweet Prognostication.

In this narrative medicine essay, a pediatric critical care physician explores the right moment to speak with parents about their child's life or death outcome, relying on the various elements involved in predicting an iffy endeavor.