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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
3.
S Afr Fam Pract (2004) ; 66(1): e1-e4, 2024 Apr 24.
Artigo em Inglês | MEDLINE | ID: mdl-38708744

RESUMO

Healthcare practitioners are regularly faced with treating patients at the end of their life, and this can be very daunting. This article hopes to help the practitioner have an approach to managing end-of-life care that makes it less distressing. The symptoms at the end-of-life include delirium and/or agitation, breathing changes, skin changes, sleeping more, decrease in need for food and drink, incontinence, and increased secretions. These symptoms are discussed and practical ways of management are given. The article further discusses how to approach the difficult conversation with the family and gives guidance as to what needs to be discussed. A number of tips are discussed on how to prepare the family to handle a death at home. It is essential to look at coping mechanisms and selfcare for practitioners dealing with end-of-life care as the death of a patient not only affects the family but also the practitioner.


Assuntos
Relações Profissional-Família , Assistência Terminal , Humanos , Assistência Terminal/psicologia , Família/psicologia , Adaptação Psicológica , Cuidados Paliativos , Comunicação
4.
Nurse Educ Today ; 138: 106214, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38640842

RESUMO

BACKGROUND: Hospitals can be challenging environments for nurses when providing palliative and end-of-life care. Understanding hospital nurses' experiences of their application of palliative and end-of-life knowledge could help direct future education to support such challenging care. AIM: To understand how hospital nurses use knowledge in palliative and end-of-life care situations. METHOD: Interpretive phenomenology was used to understand 10 hospital nurses' experiences and ability to apply palliative and end-of-life knowledge. FINDINGS: The hospital nurses' experiences of knowledge in palliative and end-of-life care was like Crossing Antarctica: unpredictable due to the changing demands and life course leading to uncertainty with knowledge and feeling helpless. Two themes emerged; Knowledge and uncertainty describes feeling unprepared, lacking in knowledge; knowledge and empowerment describes the nurses experiences of applying their knowledge in clinical environments. CONCLUSION: The nurses' sense of uncertainly could be attributed to their palliative and end-of-life knowledge being systematic, making it difficult for them to manage uncertain situations. Some nurses were empowered to apply knowledge, others were disempowered, suggesting the ability to apply their palliative and end-of-life knowledge is not determined by knowledge alone but also by the position they held.


Assuntos
Recursos Humanos de Enfermagem Hospitalar , Cuidados Paliativos , Assistência Terminal , Humanos , Assistência Terminal/psicologia , Recursos Humanos de Enfermagem Hospitalar/psicologia , Cuidados Paliativos/psicologia , Feminino , Adulto , Pesquisa Qualitativa , Conhecimentos, Atitudes e Prática em Saúde , Competência Clínica/normas , Masculino , Regiões Antárticas , Pessoa de Meia-Idade , Atitude do Pessoal de Saúde
5.
Curr Opin Support Palliat Care ; 18(2): 86-91, 2024 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-38652458

RESUMO

PURPOSE OF REVIEW: Adolescents with haematological malignancies within adult services, in the UK from 16 years old, have unique needs and require developmentally targeted services and approaches to care delivery. High-risk intensive treatments are common for this cohort and a better understanding of what individualised supportive and palliative care means in this context is required. RECENT FINDINGS: Being known and understood as an emerging adult, with particular recognition of developmental stage, is an essential component of quality measures and underpins the adolescent, and caregiver, experience when faced with an uncertain or poor cancer prognosis (UPCP). Healthcare professionals (HCPs) can experience increased emotional labour and feelings of professional inadequacy when caring for adolescents with UPCP. Therapeutic alliance improves HCPs understanding of optimum individualised care by improving communication and supported decision making. Access to training and support for HCPs is required to address the emotional impact of therapeutic alliance with teenage/adolescent and young adults (T/AYAs) with advanced cancer. SUMMARY: Investment in therapeutic alliance, alongside robust support mechanisms and targeted training, can improve the skills, confidence and wellbeing for HCPs, and can also ensure optimum individualised care for T/AYAs with UPCP. Evidence for optimum care for adolescents with advanced cancer is relatively scarce, especially for younger T/AYAs (16-24) in the UK who sit within adult services. Further evaluation of the impact of current UK expertise, services and programs are needed to inform future development.


Assuntos
Neoplasias Hematológicas , Cuidados Paliativos , Assistência Terminal , Humanos , Cuidados Paliativos/organização & administração , Adolescente , Adulto Jovem , Neoplasias Hematológicas/terapia , Neoplasias Hematológicas/psicologia , Assistência Terminal/organização & administração , Assistência Terminal/psicologia , Reino Unido , Comunicação , Tomada de Decisões , Pessoal de Saúde/psicologia , Pessoal de Saúde/organização & administração , Relações Profissional-Paciente , Prognóstico
6.
BMC Palliat Care ; 23(1): 70, 2024 Mar 12.
Artigo em Inglês | MEDLINE | ID: mdl-38468298

RESUMO

BACKGROUND: As the proportion of older persons in society increases, there is a growing trend towards providing end-of-life care in their homes. Palliative care is a complex and knowledge-demanding form of care, and nurse assistants are those who work closest to the older person at the end-of-life in their own homes. However, nurse assistants sometimes have low educational and insufficient levels of knowledge in palliative care, which can affect the quality of care they provide. Moreover, nurse assistants' experiences are relatively unexplored in this context. The purpose of the study was to illuminate nurse assistants' experiences in caring for dying older persons at home. METHOD: An empirical, qualitative interview study was conducted with 14 nurse assistants with experience of palliative care in homecare. The material was analyzed using thematic content analysis. RESULTS: From the nurse assistant's experiences, one main theme emerged: doing everything possible for the dying older person despite challenges. Moreover, three sub-themes emerged: making a difference at a crucial time, death awakens emotions, and balancing personal and professional relationships. The nurse assistants' saw their role primarily as relieving symptoms but also focusing on next of kin. The following are described as essential parts of their role: carrying out practical nursing tasks, focusing on the physical environment, working alone and seeking help from colleagues due to a physical distance to the other members of the multidisciplinary team. The nurse assistants experienced a lack of support as there was no structured guidance or debriefing available in difficult emotional situations. Furthermore, they disclosed that they were left alone to deal with their feelings. CONCLUSION: This study demonstrates that nurse assistants strive to provide comprehensive care for dying older persons despite facing obstacles from their working conditions and work organization. They lack supervision and education in palliative care, but they rely on their experience-based knowledge to a large extent and provide care according to the four cornerstones of palliative care.


Assuntos
Casas de Saúde , Assistência Terminal , Humanos , Idoso , Idoso de 80 Anos ou mais , Cuidados Paliativos/psicologia , Assistência Terminal/psicologia , Pesquisa Qualitativa , Percepção
7.
Ugeskr Laeger ; 186(4)2024 01 22.
Artigo em Dinamarquês | MEDLINE | ID: mdl-38305319

RESUMO

This review highlights the significance of supportive care for elderly patients with cancer and their caregivers. Supportive care for older patients with cancer focuses on improving their quality of life by addressing physical, psychological, social, and spiritual aspects related to the treatment and care of the patient. Patient-reported outcomes and family involvement may play significant roles in providing holistic support. Interdisciplinary collaboration among healthcare professionals ensures effective treatment and enhances the patient's journey throughout the disease trajectory.


Assuntos
Neoplasias , Assistência Terminal , Humanos , Idoso , Qualidade de Vida , Cuidados Paliativos , Assistência Terminal/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Cuidadores/psicologia
8.
Jpn J Clin Oncol ; 54(5): 507-515, 2024 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-38336476

RESUMO

Most patients with advanced cancer initially express a desire to be informed of their prognosis, and prognostic discussions between patients and their oncologists can trigger the subsequent trajectory of prognostic cognitions. On the continuum of prognostic cognition, including inaccurate/accurate prognostic awareness (awareness of incurability of cancer, terminal nature of illness or life expectancy) and prognostic acceptance (accepting one's prognosis), patients' perceptions of being informed of their prognosis by oncologists and patients' coping strategy for serious medical conditions regulate prognostic cognitions. However, nearly half of the patients with advanced cancer have poor prognostic awareness, and few patients achieve prognostic acceptance. These phenomena partly act as barriers to participation in advance care planning. When oncologists engage in advance care planning conversations, they must assess the patient's prognostic cognition and readiness for advance care planning. Considering the inaccurate prognostic awareness in a non-negligible proportion of patients and that astatic patients' preferences for future treatment and care are influenced by prognostic cognition, more research on decision-making support processes for high-quality and goal-concordant end-of-life care is needed along with research of advance care planning. In addition to making decisions regarding future medical treatment and care, oncologists must engage in continuous and dynamic goal-of-care conversations with empathic communication skills and compassion from diagnosis to end-of-life care.


Assuntos
Planejamento Antecipado de Cuidados , Cognição , Neoplasias , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Prognóstico , Relações Médico-Paciente , Assistência Terminal/psicologia , Tomada de Decisões , Comunicação
9.
BMC Palliat Care ; 23(1): 31, 2024 Feb 02.
Artigo em Inglês | MEDLINE | ID: mdl-38302931

RESUMO

BACKGROUND: In 2020, the Global Cancer Observatory reported 280,000 cases of childhood cancer worldwide, with a higher burden of disease and mortality rates in low- and middle-income countries. In 2022, the National Institute of Health reported 1708 new cases of childhood cancer in Colombia and an overall survival rate of approximately 55%. The aim of this study is to compare outcomes in children with cancer in the hospital setting during the last 72 h of life who received concurrent Pediatric Palliative Care (PPC) versus oncology care alone. METHODS: An observational descriptive study was conducted between January 2013 and June 2022 in a center for pediatric patients with oncological diagnoses. In 2017, the PPC team was created. Patients between 28 days and 17 years of age who were hospitalized at least 72 h before death were included. A retrospective review of the medical records of patients in the last 72 h of life was performed. Two cohorts were established: oncology-alone group received exclusive management by oncology, and oncology and PPC received concurrent oncology and PPC management since the diagnosis. RESULTS: We evaluated 257 medical records of deceased pediatric patients with cancer diagnoses. For the first cohort (2013-2017), 136 patients were included; for the second cohort (2018 and 2022), 121 patients were evaluated. The most frequent diagnosis was leukemia [47.1% (n = 121)]. No significant difference was found in either group between dyspnea, pain, and seizures. Dyspnea was the most frequent symptom in both groups. Agitation and anxiety were reported more frequently in children from the oncology-alone group (22.1% and 13.2%, respectively). The oncology and PPC group received more psychology and social work consultation (94.2% and 70.2% vs. 84.6 and 54.4% in the oncology alone group) and had a higher percentage of advance care planning (79.3% vs. 62.5% in the oncology alone group). CONCLUSIONS: This retrospective study highlights that PPC at the end of life (EoL) offers a holistic approach to the physical and psychosocial symptoms experienced by children with cancer; these patients received more comfort through symptom management and less aggressive treatment at the EoL. The availability of a PPC team may contribute to improvements in the quality of end-of-life care. TRIAL REGISTRATION: retrospectively registered.


Assuntos
Neoplasias , Assistência Terminal , Criança , Humanos , Cuidados Paliativos/psicologia , Estudos Retrospectivos , Assistência Terminal/psicologia , Neoplasias/complicações , Neoplasias/terapia , Dispneia , Morte
10.
J Pediatr Nurs ; 75: 187-195, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38163422

RESUMO

PURPOSE: This study investigated parents' perception of their needs and those of their children with cancer at the end-of-life period, including unmet needs and their expectations regarding providers. DESIGN AND METHODS: This cross-sectional study involved 26 parents recruited from three pediatric hematology-oncology wards in Israel who completed demographic and medical questionnaires of the child, and a parental needs questionnaire based on The Needs Assessment of Family Caregivers-Cancer questionnaire, following the death of their child. FINDINGS: Parents expressed needs related to medical care, including pain management, decision-making, and finding optimal treatment options for their children. The most prominent unmet needs were financial and psychological factors, of which, paying for medical expenses and helping their child adjust to the end of their life received the highest mean scores. There were notable gaps between desired and actual support from service providers, particularly in relation to emotional aspects. While over half of the parents believed the psychosocial team should assist with their child's emotional distress, this need was not adequately fulfilled. Some parents also expressed a desire for better emotional support during the end-of-life period. CONCLUSIONS: The study emphasizes the importance of understanding parents' needs and perspectives during this challenging time. The identified gaps in support can be attributed to parental roles, the struggle with losing hope, communication barriers between care teams and parents, among others. PRACTICE IMPLICATIONS: By gaining insight into these needs and perceptions, care teams can enhance the provision of palliative care and optimize the distribution of responsibilities within the team.


Assuntos
Luto , Neoplasias , Assistência Terminal , Criança , Humanos , Estudos Transversais , Assistência Terminal/psicologia , Pais/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Morte
11.
Pediatr Blood Cancer ; 71(6): e30893, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38265262

RESUMO

Cancer in adolescents and young adults is associated with an increased risk for suicidal ideation (SI). There are no reported pediatric oncology cases describing management of SI during end of life. We present the case of a 14-year-old male with relapsed, high-risk, B-cell acute lymphoblastic leukemia who received a haploidentical stem cell transplant and was suicidal at various points in his treatment. We discuss how to manage acute suicidality in this patient population, the importance of giving a voice to the adolescent patient, the impact of discordant goals of care, and potential preventive strategies for similar cases.


Assuntos
Ideação Suicida , Humanos , Adolescente , Masculino , Assistência Terminal/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras B/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras B/psicologia
12.
BMC Palliat Care ; 23(1): 9, 2024 Jan 03.
Artigo em Inglês | MEDLINE | ID: mdl-38172779

RESUMO

BACKGROUND: Palliative care focuses on the ability of medical students to use their expanded experiences and knowledge; however, basic medical education does not provide adequate knowledge and skills regarding palliative and end-of-life care. This study designed to examine knowledge related to palliative care and attitudes toward dying people among medical students in Jordan. METHODS: Cross-sectional, descriptive design was used in this study. A total of 404 medical students were recruited using convenience sampling techniques from six medical programs. Data was collected using a self-administered questionnaire in relation to knowledge and attitudes regarding palliative care and dying persons using Palliative Care Assessment Knowledge (PCAK) and Frommelt Attitudes toward Care of the Dying Scale Form B (FATCOD-B). RESULTS: Medical students have a moderate level of knowledge related to palliative care in (PCAK) part1 subscale about; pain managing (n = 156, 38.6 %), managing other palliative care symptoms (n = 164, 40.6 %), and in witnesses' family counseling and breaking bad news discussion (n = 178, 44.1 %). However, medical students have inadequate knowledge concerning the palliative care in part-2of the scale. Furthermore, students have positive attitudes towards caring for dying patients with mean score of 108.76 (SD = 8.05). The highest ranked attitude subscales were; Fairs/Malaise (M = 29.03, SD = 4.28), Communication (M = 21.39, SD = 2.51) and Relationship (M = 18.31, SD = 1.55). There was a significant difference in attitudes in relation to gender (t = -5.14, p < 0.001) with higher female mean score (M = 109.97) than males (M = 105.47). Also significant difference found among those who are exposed to Palliative Care and those who are not (t = -6.33, p < 0.001) with higher mean score of those exposed to palliative acre courses (M=298) than those who did not (M=106). CONCLUSION: Improving knowledge and attitudes of medical students regarding palliative and end of life care should be highlighted to medical educators and medical schools need to incorporate palliative and end-of-life care into medical curricula across all levels.


Assuntos
Estudantes de Medicina , Estudantes de Enfermagem , Assistência Terminal , Masculino , Humanos , Feminino , Cuidados Paliativos/psicologia , Estudos Transversais , Jordânia , Atitude do Pessoal de Saúde , Estudantes de Enfermagem/psicologia , Assistência Terminal/psicologia , Inquéritos e Questionários
13.
Palliat Support Care ; 22(3): 460-469, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38294285

RESUMO

OBJECTIVES: This study aimed to explore the clinical characteristics of amyotrophic lateral sclerosis (ALS) patients in Spain's north-eastern region, their inclusion in chronic care programmes, and their psychosocial and spiritual needs (PSNs). METHODS: A longitudinal descriptive study in adult patients with ALS. We analyzed clinical variables and participation in chronicity and PSNs assessment using the tool Psychosocial and Spiritual Needs Evaluation scale in end-of-life patients (ENP-E scale). RESULTS: 81 patients (average age 65.6 ± 11.7) were studied. At the study's outset, 29.7% employed non-invasive ventilation (NIV), increasing to 51.9% by its conclusion. Initial percutaneous endoscopic gastrostomy (PEG) utilization was 14.8%, rising to 35.85%. Chronic care programme participation was as follows: home care (24.7% initially, 50.6% end), palliative care (16% initially, 40.7% end), case management (13.6% initially, 50.6% end), and advance care planning registration (6.2% initially, 35.8% end). At study start, 47.8% of patients (n = 46) showed moderate-to-severe complexity in PSNs assessment using the ENP-E scale, without showing differences in age, sex, and time of evolution; whereas, on the evolutionary analysis, it was 75% (n = 24). A higher evolutionary complexity was observed in males <60 and >70 years, with no PEG and evolution of ALS of <2 and ≥5 years, and not included in chronicity programmes. When assessing concerns, physical pain and family aspects stand out in all measurements. Forty-eight percent of patients at study start and 71% at end of study showed external signs of emotional distress. SIGNIFICANCE OF RESULTS: Most ALS patients showed a high degree of complexity and were not integrated in chronicity programmes. A "care path" is proposed to integrate ALS patients in these programmes and systematically assess their needs.


Assuntos
Esclerose Lateral Amiotrófica , Humanos , Esclerose Lateral Amiotrófica/psicologia , Esclerose Lateral Amiotrófica/terapia , Esclerose Lateral Amiotrófica/complicações , Masculino , Espanha , Feminino , Idoso , Pessoa de Meia-Idade , Estudos Longitudinais , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Cuidados Paliativos/normas , Cuidados Paliativos/psicologia , Avaliação das Necessidades/estatística & dados numéricos , Idoso de 80 Anos ou mais , Inquéritos e Questionários , Assistência Terminal/métodos , Assistência Terminal/psicologia , Assistência Terminal/estatística & dados numéricos , Assistência Terminal/normas
14.
Palliat Support Care ; 22(1): 163-168, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36872568

RESUMO

OBJECTIVES: Pediatric palliative care services improve the quality of life for children with life-limiting and life-threatening diseases, although little has been published about variation based on cultural and religious factors. This article sets out to describe clinical and cultural characteristics of pediatric end-of-life patients in a majority Jewish and Muslim country with religious and legal constraints around end-of-life care. METHODS: We conducted a retrospective chart review of 78 pediatric patients who died during a 5-year period and could potentially have utilized pediatric palliative care services. RESULTS: Patients reflected a range of primary diagnoses, most commonly oncologic diseases and multisystem genetic disorders. Patients followed by the pediatric palliative care team had less invasive therapies, more pain management and advance directives, and more psychosocial support. Patients from different cultural and religious backgrounds had similar levels of pediatric palliative care team follow-up but certain differences in end-of-life care. SIGNIFICANCE OF RESULTS: In a culturally and religiously conservative context that poses constraints on decision-making around end-of-life care, pediatric palliative care services are a feasible and important means of maximizing symptom relief, as well as emotional and spiritual support, for children at the end of life and their families.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Criança , Cuidados Paliativos/psicologia , Islamismo , Judeus , Qualidade de Vida , Estudos Retrospectivos , Assistência Terminal/psicologia , Morte
15.
Palliat Support Care ; 22(2): 306-313, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37605972

RESUMO

OBJECTIVES: Within the multidisciplinary team, there can sometimes be lack of clarity as to the specific different contributions of each of the psycho-social-spiritual professionals: social workers, psychologist, and spiritual caregivers. This study examined the content of their end-of-life conversations with patients. METHODS: A total of 180 patients with terminal cancer received standard multidisciplinary care, including conversations with a social worker, psychologist, and spiritual caregiver. After each patient's death, these professionals reported using a structured tool which content areas had arisen in their conversations with that patient. RESULTS: Across all content areas, there were significant differences between social work and spiritual care. The difference between social work and psychology was slightly smaller but still quite large. Psychology and spiritual care were the most similar, though they still significantly differed in half the content areas. The differences persisted even among patients who spoke with more than 1 kind of professional. The 6 content areas examined proved to subdivide into 2 linked groups, where patients speaking about 1 were more likely to speak about the others. One group, "reflective" topics (inner and transpersonal resources, interpersonal relationships, one's past, and end of life), included all those topics which arose more often with spiritual caregivers or psychologists. The second group, "decision-making" topics (medical coping and life changes), was comprised of those topics which arose most commonly with social workers, bridging between the medical and personal aspects of care and helping patients navigate their new physical, psychological, and social worlds. SIGNIFICANCE OF RESULTS: These findings help shed light on the differences, in practice, between patients' conversations with social workers, psychologists, and spiritual caregivers and the roles these professionals are playing; can aid in formulating individualized care plans; and strengthen the working assumption that all 3 professions contribute in unique, complementary ways to improving patients' and families' well-being.


Assuntos
Terapias Espirituais , Assistência Terminal , Humanos , Espiritualidade , Serviço Social , Cuidadores/psicologia , Morte , Assistência Terminal/psicologia
16.
Am J Hosp Palliat Care ; 41(2): 193-202, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37144635

RESUMO

With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity and lengthy hospitalizations, which can be associated with a poorer quality of life. This is where pediatric palliative care (PPC) can play a significant role. PPC is a specialty of healthcare that focuses on the prevention and relief of suffering in children with serious conditions. Unfortunately, despite the well-identified need for PPC services across pediatric specialties, multiple misconceptions persist. Common myths about palliative care are identified and deconstructed in light of the most recent evidenced-based references in the field to provide guidance to healthcare providers to address these. PPC is often associated with end-of-life care, loss of hope, and cancer. Some healthcare providers and parents also believe that information like diagnosis should be withheld from children for their emotional protection. These examples of misconceptions hinder the integration of pediatric palliative care and its additional layer of support and clinical expertise. PPC providers have advanced communication skills, are able to instill hope in the face of uncertainty, are trained to initiate and implement individualized pain and symptom management plans, and understand how to improve the quality of life in children with serious illnesses. Improved awareness about the scope of PPC is needed to ensure that children benefit from the maximum expertise and support throughout their complex health trajectories.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Criança , Humanos , Cuidados Paliativos , Qualidade de Vida , Assistência Terminal/psicologia
17.
Oncologist ; 29(4): e553-e560, 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-37758042

RESUMO

BACKGROUND: Symptom burdens tend to increase for patients with cancer and their families over the disease trajectory. There is still a lack of evidence on the associations between symptom changes and the quality of dying and death. In this context, this research investigated how symptom changes influence the quality of dying and death. METHODS: This international prospective cohort study (the East Asian Collaborative Cross-Cultural Study to Elucidate the Dying Process (EASED), 2017-2019) included 22, 11, and 4 palliative care units across Japan, South Korea, and Taiwan. Eligible participants were adults (Japan and Korea, ≥18 years; Taiwan, ≥20 years) with locally advanced or metastatic cancer. Physical and psychological symptoms were assessed by physicians upon admission and within 3 days before death. Death quality was assessed using the Good Death Scale (GDS), developed in Taiwan. Univariate and multivariate regression analyses were used to identify correlations between symptom severity changes and GDS scores. RESULTS: Among 998 patients (542 [54.3%] men and 456 [45.7%] women; mean [SD] age = 70.1 [± 12.5] years), persistent dyspnea was associated with lower GDS scores when compared to stable dyspnea (ß = -0.427, 95% CI = -0.783 to -0.071). Worsened (-1.381, -1.932 to -0.831) and persistent (-1.680, -2.701 to -0.659) delirium were also significantly associated with lower GDS scores. CONCLUSIONS: Better quality of dying and death was associated with improved symptom control, especially for dyspnea and delirium. Integrating an outcome measurement for the quality of dying and death is important in the management of symptoms across the disease trajectory in a goal-concordant manner.


Assuntos
Neoplasias , Cuidados Paliativos , Assistência Terminal , Idoso , Feminino , Humanos , Masculino , Comparação Transcultural , Delírio , Dispneia , População do Leste Asiático , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Estudos Prospectivos , Assistência Terminal/psicologia , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais
18.
Palliat Support Care ; 22(2): 374-380, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37818655

RESUMO

OBJECTIVES: Discussing end-of-life (EOL) issues with patients remains challenging for health professionals. Physicians may use various expressions, including euphemistic ones, when disclosing the prognosis to their patients to reduce their psychological impact. However, the actual expressions of EOL disclosure in clinical practice are unclear. This study aims to investigate the expressions used in EOL disclosures and explore their associated factors. METHODS: A retrospective chart review was conducted enrolling all the patients who died in a university-affiliated hospital. Expressions used in the EOL disclosure were qualitatively analyzed. The patients' participation rate and length from the discussion to death were investigated. RESULTS: EOL disclosures were observed in 341 of 358 patients. The expressions used by the physicians were categorized into 4 groups; Group 1: Clear presentation of life expectancy (n = 106; 31.1%), Group 2: Euphemistic presentation of life expectancy (n = 24; 7.0%), Group 3: Presentation of risk of sudden death (n = 147; 43.1%), Group 4: No mention on life expectancy (n = 64; 18.8%). The proportion of male patients was higher in Group 2 (79%) and lower in Group 4 (56%). Patients with cancer accounted for approximately 70% of Groups 1 and 4, but only approximately 30% of Group 3. The patient participation rate was highest in Group4 (84.4%), followed by Group 2 (50.0%). The median time from EOL disclosure to death was longer in Groups 1 and 4 (26 and 29.5 days, respectively), compared to Groups 2 and 3 (18.5 and 16 days, respectively). SIGNIFICANCE OF RESULTS: A variety of expressions are used in EOL disclosure. Patterns of communication are influenced by patients' gender and type of illness (cancer or noncancer). Euphemisms do not seem to facilitate timely disclosure of life expectancy or patient participation. For health professionals, not only devising the expressions to alleviate their patients' distress when breaking bad news but also considering the communication process and patient background are essential.


Assuntos
Neoplasias , Médicos , Assistência Terminal , Humanos , Masculino , Assistência Terminal/psicologia , Estudos Retrospectivos , Neoplasias/complicações , Neoplasias/psicologia , Morte
19.
Am J Hosp Palliat Care ; 41(1): 5-7, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36854581

RESUMO

End-of-life (EOL) care is a unique area of medicine that emphasizes holistic patient-centered care. It requires clinicians to consider a patients' mental, emotional, spiritual, social and physical comforts and engage patients and their families in complex discussions and decisions. It is an area of medicine that requires sensitivity in communication in order to respond to a wide range of emotions from patients and their families. Given these intricacies, it is essential that healthcare professional trainees are exposed early in their careers so they can be better equipped to address EOL situations effectively. While many medical schools have integrated this important element in pre-clinical education, a formalized and standardized curriculum could allow for students to better engage in EOLcare scenarios that they will face as future physicians. In this editorial, we discuss potential strategies to incorporate EOL care didactics and experiential learning earlier in medical education as well as the consequences of inadequate EOL care education, particularly in medical schools, in its current state.


Assuntos
Educação Médica , Cuidados Paliativos na Terminalidade da Vida , Médicos , Assistência Terminal , Humanos , Assistência Terminal/psicologia , Currículo , Cuidados Paliativos
20.
BMC Palliat Care ; 22(1): 176, 2023 Nov 09.
Artigo em Inglês | MEDLINE | ID: mdl-37946173

RESUMO

BACKGROUND: Various factors have been found to be associated with high levels of death anxiety experienced by oncology nurses. The aim of this study was to use a person-oriented approach to examine the death anxiety patterns of Chinese oncology nurses and to analyze the differences in anxiety characteristics and their associated influencing factors. METHODS: A cross-sectional survey regarding palliative care among registered oncology nurses was conducted in Jiangsu Province, China.Latent class analyses was applied to identify their patterns of death anxiety. The score of PCQN-C (The Chinese version of the Palliative Care Quiz for Nursing) and FATCOD-B-C (The Chinese version of the Frommelt Attitude Toward Care of the Dying scale), the demographic and working characteristics were further analyzed through covariance analysis (ANCOVA) and multivariate (or logistic) regression across the subgroups. RESULTS: A two-potential-category model was selected based on the fit index. The results showed that 79% of oncology nurses belonged to the high pressure and pain group and 21% belonged to the low death anxiety group. The high pressure and pain group had significantly higher scores in the dimensions of emotion, stress and pain, time awareness, and cognition compared to the low death anxiety group. Factors influencing the high pressure and pain group included shorter working years, non-national or provincial oncology nursing specialists, non-national palliative care specialists, never discussing the topic of death with patients or family members, no palliative care related training, and PCQN and FATCOD scores. CONCLUSIONS: Our study suggests that oncology nurses' death anxiety can be divided into two categories: low death anxiety and high stress pain, and certain factors, such as being female, having a short work experience, and lacking palliative care-related training, increase the likelihood of death anxiety.


Assuntos
Enfermeiras e Enfermeiros , Assistência Terminal , Humanos , Feminino , Masculino , Assistência Terminal/psicologia , Análise de Classes Latentes , Estudos Transversais , Atitude do Pessoal de Saúde , Cuidados Paliativos/psicologia , Dor , Inquéritos e Questionários , Ansiedade
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