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1.
G Ital Nefrol ; 41(1)2024 Feb 28.
Artículo en Italiano | MEDLINE | ID: mdl-38426684

RESUMEN

The law 219/2017 is the first Italian law about advanced care planning (ACP). ACP is an important part of the therapeutic relationship between patients and doctors: thanks to ACP patients can think and discuss about end of life decisions, considering clinical aspects, but also psychological, cultural, social and ethical issues. Patients prepare themselves in advance because of the possibility of future cognitive impairment, can identify a surrogate decision maker and make end-life decisions according to their goals and values. End-stage kidney disease (ESRD) is often characterized by important symptoms, psychological suffering and social disadvantage, and patients affected by ESRD often have slow physical and cognitive decline. Despite this, access to palliative care is reduced for these patients as compared to patients affected by other end-stage organ failures. This is the reason why we want to explore the possibility of applying APC to ESRD patients. This pilot study, regarding three patients from the Dialysis Unit of ASST Crema in Italy, has been conducted to verify the applicability of the law 219/2017 in Dialysis Units. It shows that we have to deeply investigate this issue from both sanitary workers' and patients' and families' points of view. We need more studies with a larger number of patients and a longer period of follow-up, but we also need to teach sanitary workers how to approach APC and to teach people what APC is and why it's so important for everyone.


Asunto(s)
Planificación Anticipada de Atención , Fallo Renal Crónico , Cuidado Terminal , Humanos , Diálisis Renal/psicología , Proyectos Piloto , Fallo Renal Crónico/terapia , Ansiedad , Cuidado Terminal/psicología
2.
BMC Palliat Care ; 23(1): 70, 2024 Mar 12.
Artículo en Inglés | MEDLINE | ID: mdl-38468298

RESUMEN

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.


Asunto(s)
Casas de Salud , Cuidado Terminal , Humanos , Anciano , Anciano de 80 o más Años , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Investigación Cualitativa , Percepción
3.
Nurse Educ Today ; 137: 106147, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38508024

RESUMEN

BACKGROUND: End of life care for Children and Young People (CYP) is known to be an emotive area of practice. Previous studies involving qualified nurses have demonstrated that nurses feel they need more end-of-life care education, as well as a platform for sharing experiences and discussing them with others. Evidence relating to nursing students remains limited despite being widely acknowledged as a difficult aspect of nursing education. AIMS: This study aims to help improve understanding of the lived experiences of children's nursing students who have cared for a patient at, during, or immediately following end-of-life. The study describes the emotions experienced by children's nursing students and explores the student nurses' perceptions of education and support needs around caring for CYP during end-of-life care. METHODOLOGY: A qualitative inquiry methodology allowed for a pragmatic approach to design this focus group study. Nine undergraduate student children's nurses participated in two focus groups. Ethical approval was granted by the host university. Thematic data analysis using Braun and Clarke's (2019) thematic analysis was conducted. FINDINGS: Six themes emerged from the data; Emotional practice (1), the heart of the care (2), a lasting impact (3), hierarchy of grief (4), experience, knowledge and understanding (5), and the value of support (6). End of life care for children and young people is recognised by students as a sad but important part of the job role, which can have a lasting impact and which students required improved education and support for. IMPLICATIONS FOR PRACTICE: Improved education on end-of-life care is required. This should be introduced early, encompassing practical approaches to the varied nature of end-of-life care, normalising a range of emotions and delayed responses. Furthermore, improved support is required for both student nurses and qualified staff, who are supporting students caring for CYP at the end of life.


Asunto(s)
Bachillerato en Enfermería , Educación en Enfermería , Estudiantes de Enfermería , Cuidado Terminal , Niño , Humanos , Adolescente , Grupos Focales , Bachillerato en Enfermería/métodos , Estudiantes de Enfermería/psicología , Cuidado Terminal/psicología , Investigación Cualitativa
4.
BMC Palliat Care ; 23(1): 31, 2024 Feb 02.
Artículo en Inglés | MEDLINE | ID: mdl-38302931

RESUMEN

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.


Asunto(s)
Neoplasias , Cuidado Terminal , Niño , Humanos , Cuidados Paliativos/psicología , Estudios Retrospectivos , Cuidado Terminal/psicología , Neoplasias/complicaciones , Neoplasias/terapia , Disnea , Muerte
5.
Clin Infect Dis ; 78(3): e27-e36, 2024 03 20.
Artículo en Inglés | MEDLINE | ID: mdl-38301076

RESUMEN

Navigating antibiotics at the end of life is a challenge for infectious disease (ID) physicians who remain deeply committed to providing patient-centered care and engaging in shared decision making. ID physicians, who often see patients in both inpatient and outpatient settings and maintain continuity of care for patients with refractory or recurrent infections, are ideally situated to provide guidance that aligns with patients' goals and values. Complex communication skills, including navigating difficult emotions around end-of-life care, can be used to better direct shared decision making and assist with antibiotic stewardship.


Asunto(s)
Médicos , Cuidado Terminal , Humanos , Antibacterianos/uso terapéutico , Muerte , Toma de Decisiones , Pacientes Internos , Cuidado Terminal/psicología
6.
Ugeskr Laeger ; 186(4)2024 01 22.
Artículo en Danés | MEDLINE | ID: mdl-38305319

RESUMEN

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.


Asunto(s)
Neoplasias , Cuidado Terminal , Humanos , Anciano , Calidad de Vida , Cuidados Paliativos , Cuidado Terminal/psicología , Neoplasias/terapia , Neoplasias/psicología , Cuidadores/psicología
7.
J Pediatr Nurs ; 75: 187-195, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38163422

RESUMEN

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.


Asunto(s)
Aflicción , Neoplasias , Cuidado Terminal , Niño , Humanos , Estudios Transversales , Cuidado Terminal/psicología , Padres/psicología , Neoplasias/terapia , Neoplasias/psicología , Muerte
8.
Eur J Emerg Med ; 31(3): 195-200, 2024 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-38215271

RESUMEN

BACKGROUND: Although emergency medical service is focused on providing acute prehospital treatment, it is often used by terminally ill patients and their informal caregivers during the last days of patient's life. Little is known about why they decide to use the emergency medical services. STUDY OBJECTIVE: The aim was to explore informal caregivers' motivation and decision-making process for calling emergency medical services for their terminally ill loved ones. METHODS: This study used a qualitative design. Data were collected by semi-structured interviews with 31 relatives of 30 patients who used the emergency medical services. Data were analyzed with NVivo software by utilizing principles of thematic analysis. RESULTS: Through the analysis, four distinct themes emerged: (1) limited availability of support from health care services; (2) insufficient planning of care; (3) decline in the health of the patient and (4) being lost and desperate. CONCLUSION: For informal caregivers, emergency medical services represented an important source of support while caring for their terminally ill loved ones due to the limited availability of other sources of help, including a lack of specialist palliative care providers. Additionally, informal caregivers had limited knowledge of the dying process and used emergency medical services for professional advice.


Asunto(s)
Cuidadores , Servicios Médicos de Urgencia , Investigación Cualitativa , Enfermo Terminal , Humanos , Cuidadores/psicología , Masculino , Femenino , Enfermo Terminal/psicología , Persona de Mediana Edad , Anciano , Adulto , Cuidado Terminal/psicología , Toma de Decisiones , Entrevistas como Asunto , Anciano de 80 o más Años
9.
Pediatr Blood Cancer ; 71(6): e30893, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38265262

RESUMEN

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.


Asunto(s)
Ideación Suicida , Humanos , Adolescente , Masculino , Cuidado Terminal/psicología , Leucemia-Linfoma Linfoblástico de Células Precursoras B/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras B/psicología
10.
BMC Palliat Care ; 23(1): 9, 2024 Jan 03.
Artículo en Inglés | MEDLINE | ID: mdl-38172779

RESUMEN

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.


Asunto(s)
Estudiantes de Medicina , Estudiantes de Enfermería , Cuidado Terminal , Masculino , Humanos , Femenino , Cuidados Paliativos/psicología , Estudios Transversales , Jordania , Actitud del Personal de Salud , Estudiantes de Enfermería/psicología , Cuidado Terminal/psicología , Encuestas y Cuestionarios
11.
Am J Hosp Palliat Care ; 41(2): 193-202, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37144635

RESUMEN

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.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Enfermería de Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Niño , Humanos , Cuidados Paliativos , Calidad de Vida , Cuidado Terminal/psicología
12.
Palliat Support Care ; 22(1): 163-168, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-36872568

RESUMEN

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.


Asunto(s)
Cuidados Paliativos , Cuidado Terminal , Humanos , Niño , Cuidados Paliativos/psicología , Islamismo , Judíos , Calidad de Vida , Estudios Retrospectivos , Cuidado Terminal/psicología , Muerte
13.
J Am Geriatr Soc ; 72(1): 59-68, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-37947240

RESUMEN

BACKGROUND: While the Veterans Health Administration (VA) has long provided hospice care within VA community living centers (CLCs, i.e., VA nursing homes), an increasing number of Veterans are receiving hospice in VA-contracted community nursing homes (CNHs). However, little data exist about the quality of end-of-life (EOL) care provided in CNHs. The aim of this study was to compare family ratings of the quality of EOL care provided to Veterans receiving hospice in VA CLCs and VA-contracted CNHs. METHODS: We conducted a retrospective analysis of national data from VA's electronic medical record and Bereaved Family Survey (BFS) for Veterans who received hospice in VA CLCs or VA-contracted CNHs between October 2021 and March 2022. The final sample included 1238 Veterans who died in either a CLC (n = 1012) or a CNH (n = 226) and whose next-of-kin completed the BFS. Our primary outcome was the BFS global rating of care received in the last 30 days of life. Secondary outcomes included BFS items related to symptom management, communication, emotional and spiritual support, and information about burial and survivor benefits. We compared unadjusted and adjusted proportions for all BFS outcomes between those who received hospice in CLCs and CNHs. RESULTS: The adjusted proportion of family members who gave the best possible rating (a score of 9 or 10 out of a possible 10) for the overall care received near EOL was more than 13 percentage points higher for Veterans who received hospice in VA CLCs compared to VA-contracted CNHs. Our findings also revealed quality gaps of even greater magnitude in specific EOL care-focused domains. CONCLUSIONS: Our findings document inadequacies in the quality of multiple aspects of EOL care provided to Veterans in CNH-based hospice and illuminate the urgent need for policy and practice interventions to improve this care.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Cuidado Terminal , Veteranos , Humanos , Estados Unidos , Estudios Retrospectivos , Cuidado Terminal/psicología , Casas de Salud , Encuestas y Cuestionarios , United States Department of Veterans Affairs
14.
Palliat Support Care ; 22(2): 306-313, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37605972

RESUMEN

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.


Asunto(s)
Terapias Espirituales , Cuidado Terminal , Humanos , Espiritualidad , Servicio Social , Cuidadores/psicología , Muerte , Cuidado Terminal/psicología
15.
Palliat Support Care ; 22(2): 374-380, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37818655

RESUMEN

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.


Asunto(s)
Neoplasias , Médicos , Cuidado Terminal , Humanos , Masculino , Cuidado Terminal/psicología , Estudios Retrospectivos , Neoplasias/complicaciones , Neoplasias/psicología , Muerte
16.
Am J Hosp Palliat Care ; 41(1): 5-7, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-36854581

RESUMEN

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.


Asunto(s)
Educación Médica , Cuidados Paliativos al Final de la Vida , Médicos , Cuidado Terminal , Humanos , Cuidado Terminal/psicología , Curriculum , Cuidados Paliativos
17.
Adv Neonatal Care ; 23(6): 532-540, 2023 Dec 01.
Artículo en Inglés | MEDLINE | ID: mdl-38038670

RESUMEN

BACKGROUND: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation. PURPOSE: To explore the lived experience of EOLC delivery among NICU nurses, to provide evidence to enhance nurses' EOLC skills and improve their overall quality. METHODS: This qualitative study adopted a phenomenological approach. A total of 11 NICU nurses participated in semistructured in-depth interviews between June and July 2022 at the First Affiliated Hospital of University of Science and Technology of China (USTC). Colaizzi's 7-step method was used to analyze the data. RESULTS: Five main themes were identified: (a) multiple emotions are experienced during EOLC delivery; (b) EOLC delivery is stressful from various sources for nurses; (c) expressing empathy and compassion is important; (d) ethical and clinical decision-making are key components of EOLC delivery; and (e) there are challenges in improving neonatal EOLC understanding and delivery. IMPLICATIONS FOR PRACTICE AND RESEARCH: The experience of EOLC among Chinese NICU nurses is multidimensional and intensive. Institutions or units must establish and implement related protocols and guidelines to address differences between clinical practice and ideal protocols for neonatal EOLC. Educational programs that consider nurses' personal and interpersonal factors, including local culture, must be developed. Neonatal nurses in Western countries encountering Chinese-born parents who have lost their infants can gain an understanding of parents' perceptions from this study. Future research should focus on developing and testing interventions to train and support NICU nurses working with end-of-life neonates.


Asunto(s)
Enfermeras Neonatales , Cuidado Terminal , Recién Nacido , Lactante , Humanos , Unidades de Cuidado Intensivo Neonatal , Enfermeras Neonatales/psicología , Pueblos del Este de Asia , Cuidado Terminal/psicología , Emociones
18.
BMC Palliat Care ; 22(1): 176, 2023 Nov 09.
Artículo en Inglés | MEDLINE | ID: mdl-37946173

RESUMEN

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.


Asunto(s)
Enfermeras y Enfermeros , Cuidado Terminal , Humanos , Femenino , Masculino , Cuidado Terminal/psicología , Análisis de Clases Latentes , Estudios Transversales , Actitud del Personal de Salud , Cuidados Paliativos/psicología , Dolor , Encuestas y Cuestionarios , Ansiedad
19.
Ned Tijdschr Geneeskd ; 1672023 Nov 22.
Artículo en Holandés | MEDLINE | ID: mdl-37994722

RESUMEN

Palliative care: •is an approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness or frailty; •is not restricted to terminal care; •is started early in the trajectory of all life-threatening illnesses (oncological and non-oncological); •requires specific knowledge, communication skills and attitude, and an interdisciplinary approach; •requires a systematic approach for complaints and problems in all domains; •addresses all domains: physical, psychological, social and spiritual; •looks for a balance between disease-oriented and symptom-oriented treatment; •includes advance care planning and a careful exploration of a death wish. In this paper all these aspects are explored. Sources of information and possibilities for advice in complex situations are provided.


Asunto(s)
Planificación Anticipada de Atención , Fragilidad , Cuidado Terminal , Humanos , Cuidados Paliativos/psicología , Calidad de Vida , Cuidado Terminal/psicología
20.
J Hosp Palliat Nurs ; 25(6): 330-335, 2023 Dec 01.
Artículo en Inglés | MEDLINE | ID: mdl-37697471

RESUMEN

The purpose of this study was to describe the experiences of nurses caring for patients with intravenous drug use-associated infective endocarditis at the end of life in Appalachia. This study was a secondary analysis of 9 phenomenological unstructured interviews conducted by the author with nurses as part of a study exploring their lived experiences caring for this population. Data were analyzed using van Manen's 6-step approach. The analysis revealed 5 themes: (1) care at the end of life as a resolve to care for lost causes, (2) care at the end of life as an act of courageous communication, (3) care at the end of life as a resolve to endure chaos, (4) care at the end of life as a resolve to protect self and others, and (5) care at the end of life as a resolve to carry on and let go. Nurses perceived patients who use injection drugs as being at the end of life with eventual death. Patients with recurrent infective endocarditis from drug use are viewed as lost causes. To empower nurses, they need to be at the table of surgical decision making. Communication being one of a nurse's greatest tools, end-of-life communication education is needed. Administrative support should be a standard to safeguard nurses when dealing with emotionally challenging situations.


Asunto(s)
Endocarditis , Cuidado Terminal , Humanos , Cuidado Terminal/psicología , Análisis de Datos Secundarios , Región de los Apalaches , Muerte , Endocarditis/etiología
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