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1.
BMJ Open ; 14(5): e085632, 2024 05 10.
Artigo em Inglês | MEDLINE | ID: mdl-38729755

RESUMO

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.


Assuntos
Altruísmo , Cuidados Paliativos , Assistência Terminal , Humanos , Assistência Terminal/psicologia , Cuidados Paliativos/psicologia , Estudos Transversais , Planejamento Antecipado de Cuidados , Projetos de Pesquisa , Tomada de Decisões , Suicídio Assistido/psicologia , Inquéritos e Questionários , Comunicação , Pesquisa Qualitativa
2.
Palliat Support Care ; : 1-13, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38605652

RESUMO

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.

3.
Rev Med Suisse ; 20(861): 348-351, 2024 Feb 14.
Artigo em Francês | MEDLINE | ID: mdl-38353436

RESUMO

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.


Assuntos
Transtornos Mentais , Diálise Renal , Humanos , Qualidade de Vida , Cuidados Paliativos , Transtornos Mentais/psicologia
4.
Rev Med Suisse ; 19(855): 2379, 2023 Dec 20.
Artigo em Francês | MEDLINE | ID: mdl-38117104
5.
PLoS One ; 18(11): e0294807, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38015954

RESUMO

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.


Assuntos
Pessoal de Saúde , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Estudos Transversais , Suíça , Inquéritos e Questionários , Conhecimentos, Atitudes e Prática em Saúde
6.
J Pain Symptom Manage ; 66(2): e233-e237, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37072103

RESUMO

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.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Suicídio Assistido , Assistência Terminal , Humanos , Cuidados Paliativos
7.
Int J Palliat Nurs ; 29(1): 6-16, 2023 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-36692483

RESUMO

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.


Assuntos
Cuidados Paliativos , Terapias Espirituais , Humanos , Grupos Minoritários , Religião , Espiritualidade , Competência Cultural
8.
PLoS One ; 17(10): e0274597, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36301971

RESUMO

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.


Assuntos
Suicídio Assistido , Humanos , Estudos Transversais , Hospitais Universitários , Recursos Humanos em Hospital , Atitude do Pessoal de Saúde , Inquéritos e Questionários
10.
Eur Arch Otorhinolaryngol ; 279(12): 5897-5902, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35821270

RESUMO

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.


Assuntos
Neoplasias de Cabeça e Pescoço , Neoplasias , Masculino , Humanos , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Feminino , Cuidados Paliativos , Estudos Retrospectivos , Qualidade de Vida , Oncologia , Neoplasias de Cabeça e Pescoço/terapia
11.
Patient Educ Couns ; 105(9): 2976-2983, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35691793

RESUMO

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.


Assuntos
Neoplasias , Cuidados Paliativos , Humanos , Relações Interprofissionais , Oncologia , Neoplasias/terapia , Pesquisa Qualitativa , Qualidade de Vida
12.
Rev Med Suisse ; 18(769): 288-291, 2022 Feb 16.
Artigo em Francês | MEDLINE | ID: mdl-35188354

RESUMO

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.


Assuntos
Neoplasias , Cuidados Paliativos , Adulto , Pessoal de Saúde , Humanos , Pacientes Internados , Neoplasias/terapia , Qualidade de Vida
13.
Praxis (Bern 1994) ; 110(15): 831-838, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34814719

RESUMO

The provision of high-quality palliative care in nursing homes (NHs) requires specific knowledge and skills among health professionals. The aims of the study were to assess quality of care during the dying process and quality of end-of-life of NH residents in the French and Italian parts of Switzerland. 90 residents died during the study period (mean age 88.7 years). Mean of the "End-of-Life in Dementia Scales - Comfort Assessment while Dying" score was 35.7 (theoretical range 14-42). Mean of the "Quality of Dying in LongTerm Care" score was 38.3 (theoretical range 11-55). In conclusion, the quality of dying and quality of end-of-life care in NH studied can be improved improved, in particular on the anticipation level. Die Bereitstellung einer qualitativ hochwertigen Palliativversorgung in Pflegeheimen erfordert spezifische Fähigkeiten. Ziel der Studie war es, die Qualität der Sterbebegleitung von Bewohnern, die in der französisch- und italienischsprachigen Schweiz in Pflegeheimen sterben, zu bewerten. 90 Bewohner starben während der Studiendauer (Durchschnittsalter 88,7 Jahre). Der mittlere Wert der «End-of-Life in Dementia Scales - Comfort Assessment while Dying¼ lag bei 35,7 (theoretischer Bereich 14-42). Der Mittelwert der Skala «the Quality of Dying in LongTerm Care¼ lag bei 38,3 (theoretischer Bereich 11-55). Zusammenfassend lässt sich sagen, dass die Qualität der Versorgung am Lebensende in den untersuchten Pflegeheimen verbessert werden kann, insbesondere im Hinblick auf die Antizipation.


Assuntos
Morte , Assistência de Longa Duração , Idoso de 80 Anos ou mais , Estudos Transversais , Humanos , Suíça
14.
Praxis (Bern 1994) ; 110(15): 839-844, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34814722

RESUMO

Palliative care is frequently associated with the end of life and cancer. However, other patients may need palliative care, and this need may be present earlier in the disease trajectory. It is therefore essential to identify at the right time patients who need palliative care and to distinguish between those in need of general palliative care and those for whom a referral to specialists is required. ID-PALL has been developed as an instrument to support professionals in this identification and to discuss a suitable palliative care project, in order to maintain the best quality of life for patients and their relatives. Recommendations for clinical practice are also proposed to guide professionals after the identification phase.


Assuntos
Neoplasias , Cuidados Paliativos , Humanos , Qualidade de Vida
15.
PLoS One ; 16(10): e0256965, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34613982

RESUMO

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.


Assuntos
Neoplasias/terapia , Cuidados Paliativos , Adulto , Comunicação , Atenção à Saúde , Família , Feminino , Grupos Focais , Pessoal de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/organização & administração , Equipe de Assistência ao Paciente , Pesquisa Qualitativa , Adulto Jovem
16.
BMC Med Educ ; 21(1): 318, 2021 Jun 04.
Artigo em Inglês | MEDLINE | ID: mdl-34088305

RESUMO

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.


Assuntos
Competência Cultural , Cuidados Paliativos , Currículo , Humanos , Inquéritos e Questionários , Suíça
17.
J Pain Symptom Manage ; 62(3): e75-e84, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-33781917

RESUMO

CONTEXT: To improve access to palliative care, identification of patients in need of general or specialized palliative care is necessary. To our knowledge, no available identification instrument makes this distinction. ID-PALL is a screening instrument developed to differentiate between these patient groups. OBJECTIVE: To assess the structural and criterion validity and the inter-rater agreement of ID-PALL. METHODS: In this multicenter, prospective, cross-sectional study, nurses and physicians assessed medical patients hospitalized for 2 to 5 days in two tertiary hospitals in Switzerland using ID-PALL. For the criterion validity, these assessments were compared to a clinical gold standard evaluation performed by palliative care specialists. Structural validity, internal consistency and inter-rater agreement were assessed. RESULTS: 2232 patients were assessed between January and December 2018, 97% by nurses and 50% by physicians. The variances for ID-PALL G and S are explained by two factors, the first one explaining most of the variance in both cases. For ID-PALL G, sensitivity ranged between 0.80 and 0.87 and specificity between 0.56 and 0.59. ID-PALL S sensitivity ranged between 0.82 and 0.94, and specificity between 0.35 and 0.64. A cut-off value of 1 delivered the optimal values for patient identification. Cronbach's alpha was 0.78 for ID-PALL G and 0.67 for ID-PALL S. The agreement rate between nurses and physicians was 71.5% for ID-PALL G and 64.6% for ID-PALL S. CONCLUSION: ID-PALL is a promising screening instrument allowing the early identification of patients in need of general or specialized palliative care. It can be used by nurses and physicians without a specialized palliative care training. Further testing of the finalized clinical version appears warranted.


Assuntos
Cuidados Paliativos , Estudos Transversais , Humanos , Estudos Prospectivos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
18.
Artigo em Inglês | MEDLINE | ID: mdl-32631960

RESUMO

BACKGROUND AND OBJECTIVES: Meaning in life (MIL) represent a key topic in palliative care. The aims of this study were to explore (1) the differences in perceived MIL and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (2) to what extent MIL can be considered as a significant predictor of quality of life (QOL). METHODS: A cross-sectional study was conducted separately for the patients (face-to-face interviews) and the general population (telephone survey). MIL was measured with the Schedule for Meaning in Life Evaluation (SMILE) and QOL with a single-item visual analogue scale (0-10). Sociodemographic variables were controlled for in the analyses. RESULTS: 206 patients and 1015 participants from the Swiss population completed the protocol. Results indicated high MIL scores in both populations even if the difference was significant (patients 81.9 vs general population 87, p<0.001). Patients were more likely to cite 'family' (OR=1.78), 'social relations' (OR=1.9), 'spirituality and religion' (OR=3.93), 'social commitment' (OR=1.94) and 'growth' (OR=2.07), and less likely to cite 'finances' (OR=0.15) and 'health' (OR=0.21) as MIL-relevant areas. The SMILE scores and MIL areas explained 21.8% of the QOL variance for the patients and 15.1% for the representative sample. CONCLUSIONS: Our data emphasise the importance of MIL as a contributor to QOL in both populations. It highlights the importance of the life areas contributing to MIL, especially social interactions for both populations, and spirituality and areas related to growth in palliative care patients.

19.
BMC Palliat Care ; 19(1): 47, 2020 Apr 13.
Artigo em Inglês | MEDLINE | ID: mdl-32284064

RESUMO

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.


Assuntos
Família/psicologia , Pessoal de Saúde/psicologia , Cuidados Paliativos/normas , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Pacientes/psicologia , Humanos , Neoplasias/complicações , Neoplasias/psicologia , Neoplasias/terapia , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa
20.
J Pain Symptom Manage ; 60(1): e27-e30, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32276101

RESUMO

CONTEXT: The COVID-19 pandemic is spreading across the world. Many patients will not be suitable for mechanical ventilation owing to the underlying health conditions, and they will require a conservative approach including palliative care management for their important symptom burden. OBJECTIVES: To develop a management plan for patients who are not suitable for mechanical ventilation that is tailored to the stage their COVID-19 disease. METHODS: Patients were identified as being stable, unstable, or at the end of life using the early warning parameters for COVID-19. Furthermore, a COVID-19-specific assessment tool was developed locally, focusing on key symptoms observed in this population which assess dyspnoea, distress, and discomfort. This tool helped to guide the palliative care management as per patients' disease stage. RESULTS: A management plan for all patients' (stable, unstable, end of life) was created and implemented in acute hospitals. Medication guidelines were based on the limitations in resources and availability of drugs. Staff members who were unfamiliar with palliative care required simple, clear instructions to follow including medications for key symptoms such as dyspnoea, distress, fever, and discomfort. Nursing interventions and family involvement were adapted as per patients' disease stage and infection control requirements. CONCLUSION: Palliative care during the COVID-19 pandemic needs to adapt to an emergency style of palliative care as patients can deteriorate rapidly and require quick decisions and clear treatment plans. These need to be easily followed up by generalist staff members caring for these patients. Furthermore, palliative care should be at the forefront to help make the best decisions, give care to families, and offer spiritual support.


Assuntos
Tratamento Conservador , Infecções por Coronavirus/terapia , Serviços Médicos de Emergência , Cuidados Paliativos , Pneumonia Viral/terapia , COVID-19 , Tratamento Conservador/métodos , Gerenciamento Clínico , Serviços Médicos de Emergência/métodos , Humanos , Cuidados Paliativos/métodos , Pandemias , Guias de Prática Clínica como Assunto , Índice de Gravidade de Doença , Assistência Terminal/métodos
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