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1.
Qual Health Res ; : 10497323241263751, 2024 Aug 26.
Artículo en Inglés | MEDLINE | ID: mdl-39186945

RESUMEN

The prospect of death influences people's thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.e., locally in three countries, with codes shared in the three-country subgroup, and in all 10 countries with a codebook that we developed). We found that the patients' thoughts were oriented toward all three time levels (i.e., past, present, and future). Complementing these levels, we identified another, namely, the future after death. Each time level included patients actively and passively dealing with their thoughts. Past themes were remorse and regret, nostalgia, and coming to terms with past choices; present themes were feeling grateful for being alive, a time for farewells, and living for the day; future themes were worries about the future, to miss out, hope, ideas about death and dying, and planning the near future; and future after death themes were not being there, worries about loved ones, and preparations for a future after death. A changed view on lifetime and avoidance of thinking about a certain time level related to several time levels, while desire to die fluctuated between levels and between acting on and feeling about it. Living for the day, worries about the future, and worries about the well-being of loved ones were common themes in all countries.

2.
Palliat Support Care ; : 1-10, 2023 Nov 06.
Artículo en Inglés | MEDLINE | ID: mdl-37927127

RESUMEN

OBJECTIVES: Although caring for dying patients and their family caregivers (FC) is integral to patient care, training in communication about approaching death is almost inexistent in medical and nursing curricula. Consequently, many health professionals have insufficient knowledge about conducting these conversations. In order to gain a broader insight into essential aspects of this communication from different perspectives, we conducted focus groups with key stakeholders. METHODS: Medical specialists, nurses, medical students, bereaved FC and patient representatives participated in five focus groups (n = 30). Following a focus group schedule, we elicited relevant aspects of communication about approaching death, associated emotions, and appropriate communication frameworks. We analyzed data thematically. RESULTS: Four main themes were central to conversations about approaching death: (1) embracing care within medical expertise, (2) preparing the conversation while remaining open to the unexpected, (3) recognizing and reflecting on own emotions and reactions, and (4) establishing a meaningful connection with others. SIGNIFICANCE OF RESULTS: Communicating about approaching death with dying patients and their FC can be complex and challenging at a professional and personal level. With the recognition of the dying phase, a process is initiated for which health professionals need solid clinical knowledge about but also effective communication skills, constant self-reflection and self-care strategies. Comprehensive training and supervision while dealing with the challenges of communicating approaching death to dying patients and their FC are key, particularly for trainees, less experienced physicians and nurses. The essential components identified in this study can help health professionals to master these conversations.

3.
Palliat Med ; 36(1): 142-151, 2022 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-34596445

RESUMEN

BACKGROUND: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. AIM: To determine the consistency with which the Surprise Question is used. DESIGN: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]-100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. SETTING/PARTICIPANTS: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. RESULTS: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). CONCLUSIONS: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Estudios Transversales , Humanos , Atención Primaria de Salud , Pronóstico
4.
Psychooncology ; 29(4): 781-787, 2020 04.
Artículo en Inglés | MEDLINE | ID: mdl-32017298

RESUMEN

OBJECTIVE: We aimed to explore the return to work (RTW) experience of individuals in remission from extremital sarcoma. METHODS: Using a qualitative survey design, we asked sarcoma survivors about their RTW experiences after treatment. Seven men and eight women (n = 15), 43 years old in average, participated. The majority had soft tissue sarcoma (n = 14) and no amputations (n = 14). We analysed data thematically through an inductive approach. RESULTS: Participants' motivation to RTW and their experiences of this transition could be understood under the main theme of "searching for distraction and wanting to leave the disease behind," followed by "problems of the new normal." RTW was the next step after treatment; however, being back at the same workplace/institution was challenging due to the interference of the effects of the disease and treatments and peer perceptions. In other subthemes, we identified that RTW was facilitated by different "signs of readiness," as well as by "motivating factors and the meaning of having an occupation." CONCLUSIONS: Readiness to RTW while primarily an autonomous decision can also be guided by third parties, including treating physicians. RTW can be challenging, since changes in performance as well as comments from peers become a constant reminder of the status prior to the illness. Given that RTW helps distract from the disease, these reminders can be confronting and highlight the role of health professionals and employers in preparing survivors and peers to facilitate the RTW.


Asunto(s)
Neoplasias Óseas/psicología , Supervivientes de Cáncer/psicología , Reinserción al Trabajo/psicología , Sarcoma/psicología , Neoplasias de los Tejidos Blandos/psicología , Adulto , Neoplasias Óseas/terapia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Sarcoma/terapia , Neoplasias de los Tejidos Blandos/terapia
6.
BMC Palliat Care ; 19(1): 184, 2020 Nov 30.
Artículo en Inglés | MEDLINE | ID: mdl-33256786

RESUMEN

BACKGROUND: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. METHODS: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. DISCUSSION: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.


Asunto(s)
Protocolos Clínicos , Evaluación de Resultado en la Atención de Salud/métodos , Cuidados Paliativos/normas , Técnica Delphi , Humanos , Cuidados Paliativos/métodos , Investigación Cualitativa , Revisiones Sistemáticas como Asunto , Resultado del Tratamiento
7.
Palliat Med ; 33(7): 783-792, 2019 07.
Artículo en Inglés | MEDLINE | ID: mdl-31068119

RESUMEN

BACKGROUND: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients' perspectives. However, little is known about how patients' experience such interventions. AIM: To explore advanced cancer patients' experiences with a structured early palliative care intervention, its acceptability and impact on the patients' life including influencing factors. DESIGN: Qualitative content analysis of in-depth, semi-structured interviews. SETTING/PARTICIPANTS: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of "Symptoms, End-of-life decisions, Network, Support," a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. RESULTS: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel "confronting" but with the right timing it can be confirming and facilitate family conversations. Patients' personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. CONCLUSION: Early palliative care interventions like "Symptoms, End-of-life decisions, Network, Support" may provoke emotions and feel "confrontational" often because this is the first time when issues about one's end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Neoplasias/patología , Cuidados Paliativos/psicología , Anciano , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Calidad de Vida
8.
BMC Palliat Care ; 18(1): 36, 2019 Apr 09.
Artículo en Inglés | MEDLINE | ID: mdl-30979361

RESUMEN

BACKGROUND: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions. METHODS: An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance - 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A "surprise threshold" for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance. DISCUSSION: This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice. TRIAL REGISTRATION: Clinicaltrials.gov NCT03697213 (05/10/2018). Prospectively registered.


Asunto(s)
Actitud del Personal de Salud , Actitud Frente a la Muerte , Médicos Generales/psicología , Pronóstico , Bélgica , Médicos Generales/estadística & datos numéricos , Alemania , Humanos , Internet , Italia , Países Bajos , Cuidados Paliativos/métodos , Encuestas y Cuestionarios , Suiza , Reino Unido
9.
Ther Umsch ; 75(2): 135-144, 2018 Jul.
Artículo en Alemán | MEDLINE | ID: mdl-30022728

RESUMEN

Caring for patients at the end of life: Experiences and needs of physicians Abstract. In the context of death and dying, physicians are challenged in many different ways, not only professionally but also personally. Physicians are described as having a hard time accepting the finality of life. Medical practitioners find difficulties balancing their emotional involvement and their anxiety in facing death. Many specialists focus their treatment on pressing physiological problems at the time of acute crises, and have difficulty accepting that the limits of treatment effectiveness have been reached. This manuscript provides an overview of the aspects that characterise physicians' attitudes, experiences and needs when dealing with dying patients, with a view to provide information on useful approaches to communication at the end of life, as well as to encourage the development of strategies to better integrate end of life conversations and self-care practices into everyday practice. Medical training has favoured overtime a detached approach to emotions and death and dying as an isolating experience. While some patient deaths may be more confronting than others, and some conversations more difficult to start than others, turning the view to oneself can help to not only understand where the discomfort comes from, but also to improve communication patterns, stay healthy, and derive job satisfaction. By sharing perspectives and learning how other colleagues deal with similar issues, there is an opportunity for medical practitioners to develop a well-rounded approach to dealing with death and dying, which may enhance personal and professional relationships and may ultimately influence future generations of medical practitioners, as well as societal expectations.


Asunto(s)
Actitud Frente a la Muerte , Necesidades y Demandas de Servicios de Salud , Rol del Médico/psicología , Cuidado Terminal/psicología , Adaptación Psicológica , Cuidadores/psicología , Comunicación , Curriculum , Educación Médica , Humanos , Individualidad , Relaciones Médico-Paciente , Relaciones Profesional-Familia , Autocuidado/psicología , Suiza
10.
Death Stud ; 41(2): 78-86, 2017 02.
Artículo en Inglés | MEDLINE | ID: mdl-27611349

RESUMEN

The appropriateness of attending a patient's funeral is a medical dilemma. This article focuses on 437 doctors who participated in an online survey. Seventy-one percent of general practitioners, 67% of oncologists, 67% of psychiatrists, 63% of palliative medicine specialists, 52% of surgeons, and 22% of intensive care specialists had attended patient funerals. Significant differences in demographics and between specialties were identified in terms of barriers and benefits associated with attendance. Although attendance is a personal decision, there is a need for open discussions in medical education and professional development concerning death and the role of doctors after a patient dies.


Asunto(s)
Actitud del Personal de Salud , Actitud Frente a la Muerte , Ritos Fúnebres , Adulto , Anciano , Anciano de 80 o más Años , Australia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Relaciones Médico-Paciente
11.
Palliat Med ; 30(9): 889-92, 2016 10.
Artículo en Inglés | MEDLINE | ID: mdl-27013531

RESUMEN

BACKGROUND: Dying physicians may present unique challenges to palliative care teams. Studies of dying physicians are scarce, but those that exist suggest a potential absence of a coordinating clinician, prolongation of curative treatments, resistance to palliative care input and barriers to discussing psychosocial needs. AIM: The aim was to describe and examine the care provided to physician-patients referred to an Australian palliative care service, and to identify issues faced by the physician-patient and by the treating team. DESIGN AND PARTICIPANTS: A retrospective case-note audit of the case notes of medical practitioners referred for palliative care and dying between January 2007 and April 2013 was conducted. RESULTS: There was evidence of medically qualified friends or family members initiating referrals and directing treatment decisions. There was some evidence of increased consultant-led decision-making and bypassing of usual referral pathways and systems for providing after-hours advice and calling consultants directly. There also appeared to be some reluctance by junior doctors to make decisions, because of the patient's desire for consultant-level advice only. CONCLUSION: This study adds to the growing body of literature that identifies the potential difficulties associated with caring for medical practitioners. By understanding some of the complexity of this particular doctor-patient relationship, clinicians can approach the management of physician-patients facing the end of their lives with a more sound understanding of their particular care needs.


Asunto(s)
Cuidados Paliativos , Relaciones Médico-Paciente , Médicos , Australia , Humanos , Estudios Retrospectivos , Cuidado Terminal
12.
Appetite ; 100: 1-9, 2016 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-26806026

RESUMEN

Although Australians on average consume large quantities of meat, their attitudes to farm animal welfare are poorly understood. We know little about how farm animal production is discussed in Australian households or how children learn about the origins of meat. This study consisted of an online survey completed by 225 primary carers throughout Australia recruited through social media. Findings include that conversations about the origin of meat were generally stimulated by meal preparation within the home rather than visits to agricultural shows or similar activities. Parents preferred to initiate conversations with children about meat production before they were 5 years of age. Urban parents were more likely than rural parents to reveal that they were conflicted about eating meat and would be more empathetic to children who chose to stop eating meat. Rural parents were more likely than urban parents to feel that children should eat what they are given and that talking about meat is not a major issue. Both groups felt that it was important that children should know where their food comes from. The findings of this study suggest that parental attitudes to meat production and consumption influence conversations about meat origins with children.


Asunto(s)
Crianza de Animales Domésticos/métodos , Bienestar del Animal , Carnivoría , Preferencias Alimentarias , Industria para Empaquetado de Carne/métodos , Relaciones Padres-Hijo , Crianza de Animales Domésticos/educación , Crianza de Animales Domésticos/ética , Crianza de Animales Domésticos/tendencias , Bienestar del Animal/ética , Bienestar del Animal/tendencias , Animales , Australia , Carnivoría/ética , Carnivoría/psicología , Niño , Preescolar , Culinaria , Dieta Vegetariana/ética , Dieta Vegetariana/psicología , Femenino , Preferencias Alimentarias/ética , Preferencias Alimentarias/psicología , Humanos , Internet , Masculino , Comidas , Industria para Empaquetado de Carne/educación , Industria para Empaquetado de Carne/ética , Industria para Empaquetado de Carne/tendencias , Padres , Autoinforme , Socialización
13.
Palliat Support Care ; 12(4): 309-16, 2014 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-23750857

RESUMEN

OBJECTIVES: Research on the experiences, coping mechanisms, and impact of death and dying on the lives of palliative medicine specialists is limited. Most research focuses on the multidisciplinary team or on nurses who work with the dying. Fewer studies consider medical professionals trained in palliative medicine. This study aimed to explore the experiences, coping mechanisms, and impact of death and dying on palliative medicine specialists when dealing with their patients at the end of life. METHODS: A qualitative research approach guided the study, one-on-one interview data were analyzed thematically. A purposeful sampling technique was employed for participant recruitment. Seven palliative medicine specialists practicing in one city participated in open-ended, in-depth interviews. RESULTS: The analysis of participants' accounts identified three distinct themes. These were Being with the dying, Being affected by death, and dying and Adjusting to the impact of death and dying. SIGNIFICANCE OF RESULTS: This study further contributes to the understanding of the impact of death and dying on professionals who care for dying patients and their families. Despite the stressors and the potential for burnout and compassion fatigue, these participants employed strategies that enhanced meaning-making and emphasized the rewards of their work. However, the consequences of work stressors cannot be underestimated in the practice of palliative care.


Asunto(s)
Adaptación Psicológica , Actitud del Personal de Salud , Actitud Frente a la Muerte , Medicina Paliativa , Adulto , Femenino , Humanos , Entrevistas como Asunto , Masculino , Investigación Cualitativa
14.
PEC Innov ; 5: 100309, 2024 Dec 15.
Artículo en Inglés | MEDLINE | ID: mdl-39027227

RESUMEN

Objective: To help healthcare professionals (HCP) act with more confidence when communicating about approaching death, we sought to develop a communication model for HCP to facilitate conversations with dying patients and family caregivers (FC) in nonemergency situations. Methods: We used a four-phase integrative approach: (1) creation of a preliminary model based on a systematic literature review and expert knowledge, (2) review of the model draft by international palliative care experts, (3) review by key stakeholders, and (4) final appraisal by communication experts. Results: After the clinical recognition of dying, the communication model provides a structure and practical communication aids for navigating the conversation based on three phases. It describes the content and relational level as core dimensions of effective conversations about approaching death and highlights the importance of HCP self-awareness and self-care when caring for the dying. Conclusion: Based on systematic involvement of key stakeholders, the model supports clinicians navigating challenging conversations about approaching death with dying patients and their FC successfully and with more confidence. Innovation: This study expands the theoretical basis for communication about approaching death and offers a pragmatic model for educational interventions and clinical use.

15.
Ann Palliat Med ; 13(3): 627-640, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38462939

RESUMEN

BACKGROUND: To date, there is a lack of standardization and consensus on which outcomes are central to assess the care provided to patients in the last month of life. Therefore, we aimed to conduct a systematic review to identify relevant outcomes to inform the development of a core outcome set for the best care for the dying person. METHODS: We conducted a systematic review of outcomes reported in the scientific literature about the care for the dying person in the last month of life. We searched for peer-reviewed studies published before February 2022 in four electronic databases. To categorise the outcomes, we employed the taxonomy developed by the "Core Outcome Measures in Effectiveness Trials" collaboration. RESULTS: Out of the 2,933 articles retrieved, 619 were included for analyses. The majority of studies (71%) were retrospective and with data extracted from chart reviews (71%). We extracted 1,951 outcomes in total, from which, after deletion of repeated outcomes, we identified 256 unique ones. The most frequently assessed outcomes were those related to medication or therapeutic interventions and those to hospital/healthcare use. Outcomes related to psychosocial wellbeing were rarely assessed. The closer to death, the less frequently the outcomes were studied. CONCLUSIONS: Most outcomes were related to medical interventions or to hospital use. Only a few studies focused on other components of integrated care such as psychosocial aspects. It remains to be defined which of these outcomes are fundamental to achieve the best care for the dying.


Asunto(s)
Evaluación de Resultado en la Atención de Salud , Cuidado Terminal , Humanos , Cuidado Terminal/normas , Cuidados Paliativos
16.
Palliat Care Soc Pract ; 18: 26323524241260425, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39099623

RESUMEN

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

17.
World J Surg ; 37(5): 935-44, 2013 May.
Artículo en Inglés | MEDLINE | ID: mdl-23417623

RESUMEN

BACKGROUND: The present qualitative study explores surgeons' experiences and coping mechanisms with the death of their patients in the context of life-limiting illnesses. METHODS: Nine Australian surgeons participated in in-depth interviews. Thematic analysis of the interview transcriptions allowed for identification of themes and subthemes. Methodological trustworthiness and rigor were preserved at all stages of the research process. RESULTS: The essence of surgical practice, comprising participants' descriptions of their identity as surgeons, influenced their experiences and coping mechanisms when dealing with death and dying. The following subthemes were identified: distancing from patients, wanting to fix problems, doing in terms of operating on a patient, prominence of the surgeon's personal ability, and high personal responsibility for patient outcomes. Giving hope and having a mixed surgical practice were some of the coping mechanisms described by participants. DISCUSSION: Death and dying are a part of surgical practice, and surgeons face challenges as they care for dying patients. Although participants stated that they felt less affected by dealing with patients dying of life-limiting illnesses than by unexpected deaths, their descriptions of their encounters, reactions, and behaviors, as well as their use of language, suggest that these deaths have a lasting impact. Potential areas for improvement of surgical practice and approaches to teaching about death and dying in surgery are addressed. Furthermore, the results of this study suggest the need to expand research in this area.


Asunto(s)
Adaptación Psicológica , Actitud del Personal de Salud , Actitud Frente a la Muerte , Relaciones Médico-Paciente , Médicos/psicología , Especialidades Quirúrgicas , Cirugía Colorrectal , Gastroenterología , Cirugía General , Ginecología , Humanos , Entrevistas como Asunto , Rol del Médico , Investigación Cualitativa , Apoyo Social , Australia del Sur , Tanatología
18.
Front Psychol ; 14: 848637, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36993886

RESUMEN

Background: To mitigate against the possible adverse effects of stress among nurses due to the COVID-19 outbreak, we designed a 12-week mind-body based online intervention program to promote well-being and prevent stress-related disorders such as burnout. Our study aimed to compare the impact of the intervention on perception of stress, negative emotions, burnout, mindfulness, resilience, and well-being at pretest and 6 months post-intervention and to compare the effect among nurses working at two different hospitals. Methods: We conducted an uncontrolled trial using a convenience sample of nurses working at two hospitals in Mexico: one designated to treat confirmed COVID-19 patients (COVID-hospital) and the other whose patients had a negative COVID-19 test on admission (Non COVID-hospital). The 12 week online intervention consisted of 36 mind-body based micropractices, with subjective well-being as the primary outcome. Secondary outcomes were health perception, resilience, mindfulness, negative emotions, stress, and burnout. Results: A pretest survey was completed by 643 nurses. Of the remaining valid responses, 82% were women, with a mean age of 34.8 (SD = 8.95) years old. For the analysis two groups of nurses were sampled by cluster: a COVID-hospital group of 429 (67%) nurses, and a non-COVID Hospital group of 214 (33%) nurses. The proportion lost to follow-up was 71% at postest (n = 188) and 42% at 6 months follow-up (n = 371). At pretest, non-COVID hospital nurses had lower subjective well-being and higher burnout than their COVID hospital counterparts. At postest, non-COVID hospital nurses displayed more negative emotions than their COVID hospital peers. At 6 months post-intervention, nurses experienced improved mindfulness, reduced negative emotions and stress, but a decrease in subjective well-being and resilience. Nurses working at the non-COVID hospital had significantly higher mean scores for burnout than those working at the COVID hospital. Conclusion: The results of our study suggest that our online mind-body interventions can help to reduce stress and negative emotions, yet the effects on subjective well-being and resilience are uncertain. Further research is needed to gain a better understanding of their potential mechanisms and the associated efforts of such online interventions. Clinical Trial Registration: ClinicalTrials.gov, NCT05515172.

19.
Palliat Care Soc Pract ; 17: 26323524231170885, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37187530

RESUMEN

Background: Communities and local governments invest in compassionate communities (CCs) a great deal of time, money, effort, and work. However, it is not known whether the CCs are having the effect they are expected to have, so the value of continuing with these initiatives is unknown, and there is a need for a model for evaluating CCs to solve the question. Objectives: To identify a set of core outcomes or benefits that should be measured to assess the impact of the CCs. Design: Multiple-methods study involving three communities, each in a different country (Argentina, Colombia, and Switzerland). Methods and analysis: To identifying the set of core outcomes, which is the first step in developing the CC evaluation model, five phases will follow: online meetings, literature review, fieldwork, Delphi survey, and social transfer. We will involve members of the local communities of Bern, Buenos Aires, and Medellin at three different levels: (1) citizens (e.g. patients, caregivers, and family members), (2) organizations and institutions involved in the program implementation (e.g. health care organizations, churches, non-governmental organizations, and schools), and (3) political and governmental sectors. Ethics: The study will be conducted following existing international regulations and guidance such as the Declaration of Helsinki. The ethics committee of Pallium Latin America and the ethics committee of the canton of Bern considered our application exempt from the need for approval. Ethics approval in Bern and Buenos Aires is in the process of being obtained. The ethics committee of the Pontifical Bolivarian University approved this protocol. Discussion: We expect that this project will help bridge the gap in knowledge regarding the measurable impact of the CCs and enhance more CC development.

20.
Front Cardiovasc Med ; 9: 866794, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35711364

RESUMEN

Background: There are increasing calls to establish heart failure (HF) clinics due to their effectiveness in the interdisciplinary management of people living with HF. However, although a recommendation exists for palliative care (PC) providers to be part of the interdisciplinary team, few of the established HF clinics include them in their teams. Therefore, in this qualitative study, we aimed to understand the unmet PC needs of patients with HF attending an already established HF clinic. Methods: Secondary qualitative analysis of structured interviews undertaken within a larger study to validate the German version of the Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF). The NAT: PD-HF is a tool that aims to assess unmet needs in patients with HF. The interviews took place between January and March 2020 with patients from the ambulatory HF Clinic of a University Hospital in Switzerland. For this analysis, we transcribed and thematically analyzed the longest and most content-rich interviews until we reached data saturation at 31 participants. The interviews lasted 31 min on average (24-48 min). Results: Participants (n = 31) had a median age of 64 years (IQR 56-77), the majority had reduced ejection fraction, were men, and were classified as having a New York Heart Association functional class II. Participants were in general satisfied with the treatment and information received at the HF clinic. However, they reported several unmet needs. We therefore identified three ambivalences as main themes: (I) "feeling well-informed but missing essential discussions", (II) "although feeling mostly satisfied with the care, remaining with unmet care needs", and (III) "fearing a referral to palliative care but acknowledging its importance". Conclusion: Although patients who are receiving multidisciplinary management in ambulatory HF clinics are generally satisfied with the care received, they remain with unmet needs. These unmet needs, such as the need for advance care planning or the need for timely and tactful end-of-life discussions, can be fulfilled by PC providers. Including personnel trained in PC as part of the multidisciplinary team could help to address patients' needs, thus improving the quality of care and the quality of life of people living with HF.

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