Patient altruism at the end of life: A scoping review.

OBJECTIVES: The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts. METHODS: In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist. The scoping review is reported using the PRISMA checklist for scoping reviews. We used a data charting form to deductively extract data from the selected articles and then mapped data into 4 themes related to our research questions: how authors describe and employ the concept of patient altruism; expressions of patient altruism; consequences of patients' altruistic acts; and possible interventions fostering patient altruism. RESULTS: Excluding duplicates, 2893 articles were retrieved; 33 were included in the final review. Altruism was generally considered as an act or intention oriented toward the benefit of a specific (known) or non-specific (generic) recipient. Patients expressed altruism through care and support, decisions to withhold treatment or actively hasten death, and engagement in advance care planning. Consequences of altruism were categorized in patient-centered (contribution to meaning in life and quality of life), non-patient-centered (leaving a positive impact and saving money), and negative consequences (generating feelings of guilt, exposing individuals with low self-esteem). Interventions to encourage altruism comprised specific interventions, providing opportunities to plan for future care, and recognizing and respecting the patients' altruistic motivations. SIGNIFICANCE OF RESULTS: We identified heterogeneous and limited research conceptualization of patient altruism and its operationalization in palliative care settings. A deeper conceptual, empirical, and theoretical exploration of patient altruism in EOL is necessary.

[The end of dialysis: the weariness to carry on]. / Médecin et patient face à l'arrêt de la dialyse : la fatigue de continuer.

Voluntary cessation of hemodialysis is a common cause of death in dialysis patients, often occurring related to an alteration in their quality of life. At the same time, psychiatric disorders such as depression or anxiety are common and often underestimated among these patients, that accentuate the suffering and complicate compliance with dialysis. In this paper some psychopathological conditions will be addressed, as well as the question of the patient's ambivalence towards dialysis and the clinical and ethical dilemma of caregivers: respect the patient's choice to stop treatment or keep them alive at all costs? A multidisciplinary approach, including palliative care, is essential to support the reflection and make balanced decisions while respecting patient autonomy.

L'arrêt volontaire de l'hémodialyse est une cause fréquente de décès chez les patients dialysés, survenant souvent en lien avec une détérioration de leur qualité de vie. Parallèlement, les conditions psychiatriques comme la dépression ou l'anxiété sont répandues et souvent sous-estimées chez ces patients, en accentuant la souffrance et en compliquant la compliance à la dialyse. Dans cet article, sont abordées certaines conditions psychopathologiques, ainsi que la question de l'ambivalence du patient face à la dialyse et le dilemme clinique et éthique des soignants: respecter le choix du patient d'arrêter le traitement ou le maintenir en vie à tout prix? Une approche pluridisciplinaire, incluant également les soins palliatifs, est essentielle pour accompagner la réflexion et prendre des décisions pondérées dans le respect de l'autonomie des patients.

The role of palliative care in relapsed and metastatic head and neck cancer patients in a single ESMO integrated oncology and palliative care centre.

BACKGROUND: Palliative care (PC) for patients with advanced cancer improves symptom management and quality of life and may promote home deaths. Limited data are available regarding PC in advanced head and neck cancer (HNC) patients. The aim of this study was to describe the type of care and modalities of integration of specialized PC in a population of relapsed and/or metastatic head and neck cancer patients, followed in a single institution over 4 years. METHODS: Between January 2016 and December 2019, data on patients with relapsed and/or metastatic head and neck cancer not suitable for curative treatment diagnosed at the Oncology Institute of Southern Switzerland were reviewed retrospectively. Site, type and lines of treatment, treatment response, referral to specialist palliative care (yes or no), type of symptoms, tracheostomy and/or feeding-tube presence, and site of death were documented. Comparisons were made between patients benefitting from PC integration vs standard care. RESULTS: Eighty-six patients with relapsed/metastatic HNC were identified, 63 (73.3%) of whom were referred to specialized PC. Patients were mainly men (66, 76.7%), with a median age of 69 years (range 44-95). The most common site of tumour was the oropharynx (31, 36%), followed by the larynx (21, 24.4%), oral cavity (19, 22.1%), hypopharynx (14, 16.3%), and unknown primary (1, 1.2%). Forty-four patients (51.2%) were treated with systemic treatment. The median time interval between the diagnosis and palliative care referral was 1.7 months. At the time of our analysis, 69 patients had died (58 in the PC group and 11 in the non-PC group). Fifteen patients (25.9%) in the PC group and 4 (36.4%) in the non-PC group had received aggressive treatment (chemotherapy, tracheostomy and/or feeding tube) in the last month of life, with no significant difference between groups (p = 0.44). There was no difference in the incidence of home death (19.1% PC group vs 9.1% non-PC group, p = 0.67) or presence of caregiver (69.8% PC group vs 78.2% non-PC group, p = 0.58) between groups, while palliative care was associated with more opioid use (90.5% vs 17.4%, p < 0.0001). Patients in the PC group had a shorter survival compared to the non-PC group (5.7 vs 19.9 months, p = 0.0063). CONCLUSIONS: This study shows that patients appear to be at risk of receiving inappropriate invasive treatments close to death and of dying in hospital settings. Further research is needed to investigate how early PC may affect decision-making around treatments and improve HNC patients' holistic wellbeing.

[Identifying patients in need of general or specialised palliative care with ID-PALL]. / Identifier les patients nécessitant des soins palliatifs généraux ou spécialisés grâce à ID-PALL.

Palliative care is frequently associated with end of life and cancer, both in the general population and among healthcare professionals. ID-PALL is a new, short, easy-to-use instrument to help professionals to identify general or specialized palliative care needs in adult inpatients in different care settings. ID-PALL has already been validated in internal medicine units. ID-PALL should help professionals to discuss a suitable palliative care project, in order to maintain the best quality of life for patients and their relatives, and to involve palliative care specialists at the appropriate time. Recommendations for clinical practice are also proposed to guide professionals after the identification phase.

Que ce soit dans la population ou chez les professionnels de la santé, les soins palliatifs sont fréquemment associés à la fin de vie et au cancer. ID-PALL est un nouvel instrument court, facile d'utilisation, pour aider les professionnels à identifier les besoins de soins palliatifs généraux ou spécialisés chez les patients adultes hospitalisés dans les différents milieux de soins et déjà validé en médecine interne. ID-PALL devrait aider les professionnels à se mettre en discussion autour d'un projet de soins palliatifs adapté, afin de maintenir la meilleure qualité de vie possible pour les patients et leurs proches et également permettre d'appeler les spécialistes de soins palliatifs au moment opportun. Des recommandations pour la pratique clinique sont également proposées pour orienter les professionnels après la phase d'identification.

Cultural competency and sensitivity in the curriculum for palliative care professionals: a survey in Switzerland.

BACKGROUND: Cultural and linguistic diversity in patients and their relatives represents a challenge for clinical practice in palliative care around the world. Cross-cultural training for palliative care professionals is still scarce, and research can help determine and support the implementation of appropriate training. In Switzerland, health policies address diversity and equity issues, and there is a need for educational research on cross-cultural training in palliative care. The aim of this study was to investigate the clinical challenges faced by Swiss palliative care professionals when working with migrant patients and their relatives. We also documented professionals' interests in cross-cultural training. METHODS: A web survey of professionals working in specialized palliative care in the French- and Italian-speaking areas of Switzerland investigated clinical challenges with migrant populations and interests in various training opportunities. RESULTS: A total of 204 individuals responded to the survey, 48.5 % of whom were nurses. The major difficulties they reported were communication impediments associated with patients' linguistic and/or cultural backgrounds. In relation to educational needs, they expressed a particular interest in communication techniques that would allow them to deal with these issues autonomously. The professionals expressed less interest in training on collaborating with other professionals and examining one's own stereotypes. CONCLUSIONS: Palliative care professionals' post-graduate and continuing education must address communication techniques for sensitive palliative and end-of-life topics in cross-cultural contexts. Beginning with their pre-graduate studies, health professionals should assimilate the importance of collaborating with other professionals in complex cross-cultural situations and learn to reflect on their stereotypes and pre-conceptions in clinical practice.

Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families.

BACKGROUND: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization. This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families. METHODS: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis. RESULTS: Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients' openness to their own needs). CONCLUSIONS: To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals' communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged.

IDentification of patients in need of general and specialised PALLiative care (ID-PALL©): item generation, content and face validity of a new interprofessional screening instrument.

BACKGROUND: Early identification of patients requiring palliative care is a major public health concern. A growing number of instruments exist to help professionals to identify these patients, however, thus far, none have been thoroughly assessed for criterion validity. In addition, no currently available instruments differentiate between patients in need of general vs. specialised palliative care, and most are primarily intended for use by physicians. This study aims to develop and rigorously validate a new interprofessional instrument allowing identification of patients in need of general vs specialised palliative care. METHODS: The instrument development involved four steps: i) literature review to determine the concept to measure; ii) generation of a set of items; iii) review of the initial set of items by experts to establish the content validity; iv) administration of the items to a sample of the target population to establish face validity. We conducted a Delphi process with experts in palliative care to accomplish step 3 and sent a questionnaire to nurses and physicians non-specialised in palliative care to complete step 4. The study was conducted in the French and Italian-speaking regions of Switzerland. An interdisciplinary committee of clinical experts supervised all steps. RESULTS: The literature review confirmed the necessity of distinguishing between general and specialised palliative care needs and of adapting clinical recommendations to these different needs. Thirty-six nurses and physicians participated in the Delphi process and 28 were involved in the face validity assessment. The Delphi process resulted in two lists: a 7-item list to identify patients in need of general PC and an 8-item list to identify specialised PC needs. The content and face validity were deemed to be acceptable by both the expert and target populations. CONCLUSION: This instrument makes a significant contribution to the identification of patients with palliative care needs as it has been designed to differentiate between general and specialised palliative care needs. Moreover, diagnostic data is not fundamental to the use of the instrument, thus facilitating its use by healthcare professionals other than physicians, in particular nurses. Internal and criterion validity assessments are ongoing and essential before wider dissemination of the instrument.

Family members' experiences of assisted dying: A systematic literature review with thematic synthesis.

BACKGROUND: Families' experiences of assisted dying are under-investigated and families are rarely considered in clinical guidelines concerning assisted dying. AIM: To systematically review family experiences of assisted dying. DESIGN: A systematic literature review using thematic synthesis. DATA SOURCES: MEDLINE, Embase, CINAHL, AMED (Allied and Complementary Medicine) and PsycINFO databases (January 1992 to February 2019). Studies investigating families' experiences on the practice of legalised assisted dying were included. We excluded studies prior to legalisation within the jurisdiction, secondary data analysis and opinion papers. RESULTS: Nineteen articles met the inclusion criteria. Publications were derived from four countries: The Netherlands, United States (Oregon, Washington and Vermont), Canada and Switzerland. Dutch studies predominately investigated family involvement in euthanasia, while Swiss and American studies only reported on assisted suicide. Eleven studies had a qualitative design, using predominately in-depth interviews; seven were retrospective surveys. Five analytical themes represented families' experiences in assisted dying: (1) context of the decision, (2) grounding the decision, (3) cognitive and emotional work, (4) experiencing the final farewell and (5) grief and bereavement. The results showed that families can be very involved in supporting patients seeking assisted dying, where open communication is maintained. Family involvement appeared to be influenced by the type of legislation in their country and the families' perception of the social acceptability of assisted dying. CONCLUSION: Our data confirm that families across all jurisdictions are involved in assisted suicide decision and enactment. Family needs are under-researched, and clinical guidelines should incorporate recommendations about how to consider family needs and how to provide them with evidence-based tailored interventions.

Multidrug infusions in a Swiss palliative care unit: assessment of frequent combinations in terms of clinical effectiveness, compatibility, and stability.

PURPOSE: The objectives of this study were to trace, monitor, and assess for clinical effectiveness, visual compatibility, and stability of commonly used combinations of drugs for patients hospitalized in a Swiss palliative care unit, over a 12-month period. METHODS: In this longitudinal analysis, commonly used multidrug combinations were monitored with a duly created data collection sheet for healthcare professionals. Assessment of visual changes of the mixtures and the evaluation of major changes in the overall symptom control over time were recorded. The clinical changes were classified according to reasonable correlation to the modality of drug administration and not to clinical evolution of the underlying disease. RESULTS: Over a 12-month period, a total of 48 multidrug infusions were recorded and monitored. The infusions were composed of two, three, four, or five active principles. Infusions were given over a 24-h period, mainly intravenously, either through an implantable venous access port or a peripheral venous access. Main diluent was normal saline solution. Commonly used drug combinations included morphine and haloperidol, morphine, haloperidol and octreotide, morphine, haloperidol, octreotide, and chlorpromazine. No precipitations were observed during the study. Patients maintained a clinical stability and no salient changes in symptom control were attributed to inefficacy of the multidrug infusions. CONCLUSIONS: The use of multidrug infusions for parenteral administration appears to confirm an adequate visual compatibility and stability, while maintaining effectiveness in terms of overall symptom control.

Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

Challenges for palliative care professionals in providing spiritual care to patients from religious or cultural minority groups: a scoping review of the literature.

In light of the increasing number of people living into advanced age and the intensification of migration flows, care provision to multi-cultural and religious patient populations has become an important concern for many palliative care professionals. The current scoping review aims to explore the main barriers to spiritual care provision for minority groups and identify some strategies to overcome such obstacles. The review draws some general recommendations for researchers, policymakers and clinicians. First, more empirical research on different patient groups is needed; studies should target not only nurses, but also other healthcare providers, to ensure that practice adequately reflects the multidisciplinary nature of palliative care. Secondly, training and education should be offered in various forms and at different levels, as well as go beyond factual knowledge about the beliefs and practices of various religions.

Should Palliative Care Teams be Involved in Medical Assisted Dying?

Palliative care teams offer holistic care for patients experiencing serious illness and related suffering, nevertheless, there are times when clinicians are asked by patients for help to obtain assisted dying. Patients in a growing number of areas may be eligible to request medically administered or self-administered lethal medications to control the timing of death and palliative care practices, established to neither hasten nor postpone death, may be challenged when caring for patients asking for assisted dying. In this "Controversies in Palliative Care" article, we invite three experts to provide a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. These experts suggest palliative care teams should be and are involved in medical assisted dying, but how palliative care teams are involved may depend on type of assisted dying requested, team members' scope of practice, legal regulations, and institutional guidelines. Research is needed on many aspects of assisted dying and palliative care including improving evidence-based clinical guidelines, addressing the needs of families, and coping strategies for all involved. An international study comparing assisted dying practices within, and outside palliative care may inform policy helping to clarify whether the integration of palliative care in assisted dying improves end-of-life care. In addition to research, it is recommended that researchers and clinicians collaborate on the development of a clinical textbook on assisted dying and palliative care to support all palliative care team members, offering guidelines and recommendations for practice.

Awareness, attitudes, and beliefs about palliative care: Results from a representative survey of the Italian-speaking Swiss population.

OBJECTIVE: To understand the knowledge and awareness of palliative care in the Italian-speaking Swiss general population, describing main misconceptions or false beliefs and their relationship with attitudes towards palliative care. METHODS: Cross-sectional representative population survey (N = 313). RESULTS: We observed a high awareness of «palliative care,¼ although it is mainly associated with pain management and the very last days of life. While false beliefs are relatively rare, there is low awareness of goals, targets, and services offered by palliative care. Overall the Italian-speaking Swiss population has a good predisposition towards palliative care, but negative attitudes are more common among those who lack knowledge. More than one-third of respondents are interested in receiving more information about palliative care, especially from their healthcare providers or through dedicated information points. CONCLUSION AND PRACTICE IMPLICATIONS: Health communication interventions to promote palliative care are needed because there is still significant unclarity about the goals of palliative care, which negatively affects its acceptance. This study instructs on how to intervene specifically in the Italian-speaking part of Switzerland, including what to communicate and how. Further, our findings can inspire similar studies in other Swiss regions or countries that can optimize recognition, knowledge, and understanding and contribute to filling gaps in populations' health service demand and utilization.

[Palliative Care Network - 20 years of experiences from Ticino / Southern Switzerland]. / Palliative Care im Netzwerk - Erfahrungen aus 20 Jahren am Beispiel Tessin.

The PC program of the Italian speaking part of Switzerland (Ticino) has been developed bottom up since 1990. It was started with a palliative homecare service, called Hospice Ticino. Six years later PC consultant teams were introduced in the public hospitals. Finally in 2003 an acute palliative care unit was opened. Few resources are still lacking to ensure a comprehensive network, especially in the private clinics and in the elderly homes. Through the newly implemented National Strategy in PC 2010 - 12, the government of Canton Ticino has been charged with promoting a comprehensive, strategic and operative program in PC in order to guarantee access to high quality PC to every patient wherever he choses to be cared for. The article describes the history of Ticino's palliative care program, highlighting some of its controversial issues.

A qualitative analysis of educational, professional and socio-cultural issues affecting interprofessional collaboration in oncology palliative care.

OBJECTIVES: Oncology palliative care (PC) services seek to improve quality of life in patients with cancer. PC providers face significant systemic obstacles, stemming from insufficient collaboration between healthcare providers. This study explores these obstacles and strategies to help facilitate successful collaboration amongst healthcare providers at a systemic level. METHODS: A multicenter qualitative study was conducted via interviews and focus groups. Fifty employees in Italian-speaking Switzerland were interviewed, along with ten relatives of oncology patients. Framework analysis was used to identify and categorize the most prominent themes. RESULTS: Three main themes were identified: knowledge of and connection to other healthcare approaches; beliefs, attitudes and behavior regarding collaboration; and values, attitudes and beliefs towards life, end-of-life and optimal care approaches for oncology patients. CONCLUSIONS: Strategies that promote interprofessional collaboration and oncology PC services should foster a cultural shift towards perceiving these services as a medical specialty, thereby contributing to quality patient care. IMPLICATIONS: An overview of potential limitations is provided, in addition to a timeline of interprofessional collaboration which would help to optimize oncology PC services.

Attitudes of university hospital staff towards in-house assisted suicide.

OBJECTIVE: To investigate staff attitudes toward assisted suicide in the hospital setting in Switzerland. DESIGN: Cross-sectional study. SETTING: Two University Hospitals in French speaking regions of Switzerland. PARTICIPANTS: 13'834 health care professionals, including all personnel caring for patients, were invited to participate. MAIN OUTCOME MEASURES AND OTHER VARIABLES: Attitudes towards the participation of hospital health care professionals in assisted suicide were investigated with an online questionnaire. RESULTS: Among all invited professionals, 5'127 responded by filling in the survey at least partially (response rate 37.0%), and 3'683 completed the entire survey (26.6%). 73.0% of participants approved that this practice should be authorized in their hospital and saw more positive than negative effects. 57.6% would consider assisted suicide for themselves. Non-medical professionals were 1.28 to 5.25 times more likely to approve assisted suicide than physicians (p<0.001). 70.7% of respondents indicated that each professional should have the choice of whether to assist in suicide. CONCLUSIONS: This multiprofessional survey sheds light on hospital staff perceptions of assisted suicide happening within hospital walls, which may inform the development of rules considering their wishes but also their reluctances. Further research using a mixed-methods approach could help reach an in-depth understanding of staff's attitudes and considerations towards assisted suicide practices.

A qualitative exploration of interactional and organizational determinants of collaboration in cancer palliative care settings: Family members', health care professionals' and key informants' perspectives.

As life expectancy has increased, a growing number of people experience conditions, including cancers, that carry complex health and social needs. Palliative care services have the potential to address these needs but face significant obstacles. One major obstacle is suboptimal interprofessional collaboration. This study's goal was an in-depth exploration of interactional and organizational barriers and supports of collaboration in palliative care in Switzerland. We sought the perspectives of health care professionals, patients' family members and leaders and experts in oncology/palliative care delivery (key informants) through interviews and focus groups with fifty HPs and key informants and ten patients' family members. Qualitative analyses of interviews and focus groups used framework analysis. We identified three major themes of interaction: personal characteristics, communication, and connectedness with other health care professionals; and three major organizational themes: service characteristics, standardized communication and processes, and service coordination and promotion. Based on our findings, we recommend that health care professionals consider strategies to increase their collaboration and communication skills and opportunities to interact. We advocate the implementation of methods for coordinating services, standardization of consultation/referral procedures and communication between health care professionals, and the promotion of underutilized services to foster successful, sustainable collaboration.