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1.
Artigo em Inglês | MEDLINE | ID: mdl-35954917

RESUMO

(1) Background: Nursing students should be well-prepared and educated in order to provide high-quality palliative care (PC) to patients with chronic diseases, which will have an impact on the quality of care for dying patients in the future; this study aimed to investigate the level of knowledge about PC and attitudes towards the care of dying patients among Palestinian nursing undergraduate students; (2) Methods: The study was a descriptive quantitative cross-sectional study design of 410 nursing students who participated and completed the questionnaire. The PC Quiz for Nurses (PCQN) and the Short Version of the Frommelt Attitudes Towards Care of the Dying (FATCOD) Form B Scales were used to assess students' PC knowledge and attitudes toward PC and caring for dying patients. Generalized linear regression analysis was applied to identify the influencing variables on knowledge and attitudes; (3) Results: The overall knowledge mean score was 7.42 ± 2.93, ranging from 0 to 20, which indicates that nursing students lacked knowledge about PC; however, they have a positive attitude (25.94 ± 4.72; ranging from 9 to 45) toward care for a dying person. Receiving lectures or training about PC, caring for relatives in their last days of life, gender, and year of study were independently associated with students' knowledge and attitudes about PC and care of dying patients; and (4) Conclusion: This study generated evidence showing insufficient knowledge about PC among nursing students at the Al-Quds University, Palestine, albeit a favorable attitude towards EoLC was shown. Integrating PC education into the nursing curriculum at Palestinian Universities need to increase their awareness of PC.


Assuntos
Bacharelado em Enfermagem , Estudantes de Enfermagem , Assistência Terminal , Árabes , Atitude do Pessoal de Saúde , Estudos Transversais , Humanos , Cuidados Paliativos , Inquéritos e Questionários , Universidades
2.
BMC Palliat Care ; 21(1): 142, 2022 Aug 10.
Artigo em Inglês | MEDLINE | ID: mdl-35945558

RESUMO

BACKGROUND: Growing numbers of people with advanced illnesses who wish to die at home, a concurrent decline in the accessibility of professional home care, and policies aiming at prolonging work participation are increasing the reliance on family caregivers. This study aimed to describe trajectories in burden of working family caregivers who care for patients with a life-threatening illness, and identify factors in work and care that are related to changes in burden over time. METHODS: Semi-structured interviews were held in one to four rounds between July 2018 and November 2020 with 17 working family caregivers of patients with a life-threatening illness living at home. Transcripts were analysed as a single unit to create timelines per participant. Next, individual burden trajectories were created and grouped based on the course of burden over time. Factors related to changes in burden were analysed, as well as similarities and differences between the groups. RESULTS: It was common for family caregivers who combine work and end-of-life care to experience a burden. Two trajectories of caregiver burden were identified; caregivers with a persistent level of burden and caregivers with an increasing burden over time. Family caregivers with a persistent level of burden seemed to be at risk for burnout throughout the illness trajectory, but were often able to cope with the situation by making arrangements in care or work. Caregivers with an increasing burden were unable to make sufficient adjustments, which often resulted in burnout symptoms and sick leave. In both groups, burden was mostly related to aspects of the care situation. The emotional burden, a decreasing burden after death and a different view on the trajectory in hindsight proved to be important overarching themes. CONCLUSIONS: Providing care to a loved one nearing the end of life is often emotionally burdensome and intensive. To facilitate the combination of paid work and family care, and reduce the risk of burnout, more support is needed from employers and healthcare professionals during the illness trajectory and after death. Bereaved family caregivers also warrant more attention from their supervisors and occupational physicians in order to facilitate their return to work.


Assuntos
Cuidadores , Assistência Terminal , Adaptação Psicológica , Cuidadores/psicologia , Morte , Humanos , Pesquisa Qualitativa
3.
Indian J Med Res ; 155(2): 232-242, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-35946200

RESUMO

India has a high share in the global burden of chronic terminal illnesses. However, there is a lack of a uniform system in providing better end-of-life care (EOLC) for large patients in their terminal stage of life. Institutional policies can be a good alternative as there is no national level policy for EOLC. This article describes the important aspects of the EOLC policy at one of the tertiary care institutes of India. A 15 member institutional committee including representatives from various departments was formed to develop this institutional policy. This policy document is aimed at helping to recognize the potentially non-beneficial or harmful treatments and provide transparency and accountability of the process of limitation of treatment through proper documentation that closely reflects the Indian legal viewpoint on this matter. Four steps are proposed in this direction: (i) recognition of a potentially non-beneficial or harmful treatment by the physicians, (ii) consensus among all the caregivers on a potentially non-beneficial or harmful treatment and initiation of the best supportive care pathway, (iii) initiation of EOLC pathways, and (iv) symptom management and ongoing supportive care till death. The article also focuses on the step-by-step process of formulation of this institutional policy, so that it can work as a blueprint for other institutions of our country to identify the infrastructural needs and resources and to formulate their own policies.


Assuntos
Pacientes Internados , Assistência Terminal , Humanos , Índia/epidemiologia , Política Organizacional , Centros de Atenção Terciária
4.
Narrat Inq Bioeth ; 12(1): 93-102, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35912611

RESUMO

American and Japanese laws, customs, and practices in end-of-life decision-making differ significantly. We present a case with which one of the authors was involved to illustrate some of the key legal and cultural differences in the declaration of brain death, limiting and withdrawing life-prolonging interventions, and healthcare ethics consultation practices. The analysis presented facilitates understanding of similarities and differences between Japanese and American healthcare ethics specifically in regards to end-of-life care. Further, the analysis provides insights that can aid in developing policies and practices in regions where multiple cultures coexist.


Assuntos
Consultoria Ética , Assistência Terminal , Morte Encefálica , Tomada de Decisões , Atenção à Saúde , Humanos , Japão , Estados Unidos
6.
Indian J Cancer ; 59(2): 265-268, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35946186

RESUMO

Pain is a common and highly distressing symptom in children with advanced malignancies and it is often multifactorial at the end-of-life. The prognosis of cancer pain is reported to be worse in those with mixed pain type, high pain severity, daily opioid use, and poor emotional well-being. We describe a case of 13-year-old boy, known case of metastatic Ewing sarcoma right iliac bone, who presented to our palliative care ward with intractable pain and was finally discharged home for terminal care with high doses of morphine, ketamine, and midazolam infusion through elastomeric pump attached to a peripherally inserted central catheter (PICC line). The suffering of imminently dying children should be reduced, and judicious dose escalation of opioids along with adjuvants is appropriate and often necessary.


Assuntos
Dor do Câncer , Neoplasias , Dor Intratável , Assistência Terminal , Adolescente , Dor do Câncer/prevenção & controle , Humanos , Masculino , Morfina/uso terapêutico , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Dor Intratável/prevenção & controle
8.
Artigo em Inglês | MEDLINE | ID: mdl-35954548

RESUMO

Hospice care is a comprehensive approach addressing patients' physical, psychosocial, and spiritual needs at the end of life (EoL). Despite the recognition of its effectiveness in improving the quality of EoL care, little is known about hospice care in mainland China. In this study, we aimed to examine the preferences for hospice care and its related factors among community-dwelling residents in mainland China. Participants were recruited using a convenience sampling method, and 992 community-dwelling residents responded to an online survey from June 2018 to August 2019. The majority (66.7%) of the participants were female, and the mean age was 48.4 years. Approximately 28% of the participants had heard of hospice care, and 91.2% preferred to receive hospice care if diagnosed with a terminal illness. Participants who had heard of hospice care, and with higher levels of education (bachelor's degree or above) and health insurance coverage were more likely to accept hospice care than their counterparts. Community-based education on hospice care is imperative to improve public knowledge and the acceptance of hospice care. Meanwhile, there is a need to develop policies to integrate and expand hospice care into clinical settings.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , China , Feminino , Humanos , Vida Independente , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Assistência Terminal/psicologia
9.
J Palliat Med ; 25(8): 1313, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35913484
12.
Br Med Bull ; 142(1): 44-51, 2022 07 09.
Artigo em Inglês | MEDLINE | ID: mdl-35792900

RESUMO

INTRODUCTION: Covid-19 led to a sustained increase in deaths in all four United Kingdom nations, placing strain on the UK's palliative and end-of-life care sector and raising concerns about the long-term sustainability of the sector's funding and resourcing model in the face of rising demand for these services in the coming decades. SOURCES OF DATA: Published research, Marie Curie, King's College London Cicely Saunders Institute, Hull York Medical School, University of Hull, University of Cambridge, National Statistics, PubMed, DOI. AREAS OF AGREEMENT: Care for people at the end of their lives is a core part of the UK's health and care system with demand set to increase significantly as the UK's population ages. AREAS OF CONTROVERSY: The UK's funding model for palliative and end-of-life care, with most care delivered by charitable sector providers and reliant on charitable donations, may be unsustainable in the face of increasing demand. GROWING POINTS: The Covid-19 pandemic led to rapid service innovation in palliative and end-of-life care, and providers should assess which of and how these innovations can be retained after the pandemic. AREAS TIMELY FOR DEVELOPING RESEARCH: Although there has been a rapid growth in knowledge during Covid-19, gaps still remain including: the reasons underlying shifts to deaths at home and the implications for family carers; the education needs of the wider healthcare workforce in palliative care; the impact of specialist palliative care services on the wider health system, including hospital admissions and place of death; and inequalities in the experiences of dying, death and bereavement during Covid-19 among groups such as those from lower socioeconomic groups and BAME communities.


Assuntos
COVID-19 , Assistência Terminal , COVID-19/epidemiologia , Humanos , Cuidados Paliativos , Pandemias , Reino Unido/epidemiologia
14.
Artigo em Inglês | MEDLINE | ID: mdl-35805407

RESUMO

The increasing demand for palliative care in New Zealand presents a potential threat to the quality of service delivery. One strategy to overcome this is through the implementation of valid and reliable patient-reported outcome measures. This mixed-methods study aimed to (1) implement measurement-based palliative care (MBPC) in a community palliative care service in Auckland, New Zealand; (2) evaluate the clinical utility of MBPC perceived by clinicians; (3) describe patient characteristics as measured by the Integrated Palliative Care Outcome Scale (IPOS), the Australasian Modified Karnofsky Performance Scale (AKPS), and Phase of Illness (POI); and (4) evaluate the internal consistency of the IPOS. Participants were over 18 years of age from a community outpatient palliative care service. In a phased approach to implementation, healthcare staff were educated on each instrument used for patient assessment. Uptake and internal consistency were evaluated through descriptive statistics. An interpretive descriptive methodology was used to explore the clinical utility of MBPC through semi-structured interviews with seven clinical staff members. Individual patient assessments (n = 1507) were undertaken predominantly on admission, with decreasing frequency as patients advanced through to the terminal phase of their care. Mean total IPOS scores were 17.97 (SD = 10.39, α = 0.78). The POI showed that 65% of patients were in the stable phase, 20% were in the unstable phase, 9% were in the deteriorating phase, and 2% were in the terminal phase. Clinicians reported that MBPC facilitated holistic and comprehensive assessments, as well as the development of a common interdisciplinary language. Clinicians expressed discomfort using the psychosocial and spiritual items. Measurement-based palliative care was only partially implemented but it was valued by staff and perceived to increase the quality of service delivery. Future research should determine the optimal timing of assessments, cultural responsivity for Maori and Pacific patients, and the role of MBPC in decision support for clinicians.


Assuntos
Cuidados Paliativos , Assistência Terminal , Adolescente , Adulto , Hospitalização , Humanos , Nova Zelândia , Medidas de Resultados Relatados pelo Paciente
15.
Artigo em Inglês | MEDLINE | ID: mdl-35805560

RESUMO

End-of-life care and the limitation of therapeutic effort are among the most controversial aspects of medical practice. Many subjective factors can influence decision-making regarding these issues. The Q methodology provides a scientific basis for the systematic study of subjectivity by identifying different thought patterns. This methodology was performed to find student profiles in 143 students at Cantabria University (Spain), who will soon deal with difficult situations related to this topic. A chi-square test was used to compare proportions. We obtained three profiles: the first seeks to ensure quality of life and attaches great importance to the patient's wishes; the second prioritizes life extension above anything else; the third incorporates the economic perspective into medical decision-making. Those who had religious beliefs were mostly included in profile 2 (48.8% vs. 7.3% in profile 1 and 43.9% in profile 3), and those who considered that their beliefs did not influence their ethical principles, were mainly included in profile 3 (48.5% vs. 24.7% in profile 1 and 26.8% in profile 2). The different profiles on end-of-life care amongst medical students are influenced by personal factors. Increasing the clinical experience of students with terminally ill patients would contribute to the development of knowledge-based opinion profiles and would avoid reliance on personal experiences.


Assuntos
Estudantes de Medicina , Assistência Terminal , Tomada de Decisão Clínica , Humanos , Percepção , Qualidade de Vida , Assistência Terminal/métodos
16.
BMC Palliat Care ; 21(1): 129, 2022 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-35841019

RESUMO

BACKGROUND: Patients undergoing hemodialysis have a high mortality rate and yet underutilize palliative care and hospice resources. The Shared Decision Making-Renal Supportive Care (SDM-RSC) intervention focused on goals of care conversations between patients and family members with the nephrologist and social worker. The intervention targeted deficiencies in communication, estimating prognosis, and transition planning for seriously ill dialysis patients. The intervention showed capacity to increase substantially completion of advance care directives. The HIGHway Project, adapted from the previous SDM-RSC, scale up training social workers or nurses in dialysis center in advance care planning (ACP), and then support them for a subsequent 9-month action period, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care. METHODS: We will train between 50-60 dialysis teams, led by social workers or nurses, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care. This implementation project uses the Knowledge to Action (KTA) Framework within the Consolidated Framework for Implementation Research (CFIR) to increase adoption and sustainability in the participating dialysis centers. This includes a curriculum about how to hold ACP conversation and coaching with monthly teleconferences through case discussion and mentoring. An application software will guide on the process and provide resources for holding ACP conversations. Our project will focus on implementation outcomes. Success will be determined by adoption and effective use of the ACP approach. Patient and provider outcomes will be measured by the number of ACP conversations held and documented; the quality and fidelity of ACP conversations to the HIGHway process as taught during education sessions; impact on knowledge and skills; content, relevance, and significance of ACP intervention for patients, and Supportive Kidney Care (SKC) App usage. Currently HIGHway is in the recruitment stage. DISCUSSION: Effective changes to advance care planning processes in dialysis centers can lead to institutional policy and protocol changes, providing a model for patients receiving dialysis treatment in the US. The result will be a widespread improvement in advance care planning, thereby remedying one of the current barriers to patient-centered, goal-concordant care for dialysis patients. TRIAL REGISTRATION: The George Washington University Protocol Record NCR213481, Honoring Individual Goals and Hopes: Implementing Advance Care Planning for Persons with Kidney Disease on Dialysis, is registered in ClinicalTrials.gov Identifier: NCT05324878 on April 11th, 2022.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Diretivas Antecipadas , Humanos , Nefrologistas , Diálise Renal/métodos , Assistência Terminal/métodos
17.
Int J Palliat Nurs ; 28(7): 314-321, 2022 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-35861440

RESUMO

BACKGROUND: The concept of end of life (EOL), as in the term end-of-life care, is used synonymously in both palliative and terminal care. Practitioners and researchers both require a clearer specification of the end-of-life concept to be able to provide appropriate care in this phase of life and to conduct robust research on a well-described theoretical basis. AIMS: The aim of this study was to critically analyse the end-of-life concept and its associated terminology. METHOD: A concept analysis was performed by applying Rodgers' evolutionary concept analysis method. FINDINGS: Time remaining, clinical status/physical symptoms, psychosocial symptoms and dignity were identified as the main attributes of the concept. Transition into the end-of-life phase and its recognition were identified as antecedents. This study demonstrates that end-of-life care emerged following the application of the 'end-of-life concept' to clinical practice. CONCLUSION: The early recognition of the end-of-life phase seems to be crucial to ensuring an individual has well-managed symptoms and a dignified death.


Assuntos
Assistência Terminal , Morte , Humanos , Cuidados Paliativos , Respeito
18.
Eur J Oncol Nurs ; 59: 102168, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35780706

RESUMO

AIM: The aim of this systematic review was to determine the impact that specialist community palliative care teams (SCPCT) have on acute hospital admission rates in adult palliative care (PC) patients who require End of Life Care (EOLC). METHOD: Using systematic review methodology, eight studies were obtained from thorough searching of CINAHL, Medline and Embase databases. The review question was formulated using the PICO mnemonic - Population, Intervention, Comparison and Outcome. PRISMA guidelines were used to conduct the review and record the database searches. Data were extracted using a pre-designed extraction tool and all included studies were quality appraised using the checklist. The results are presented as a narrative review. RESULTS: For the purposes of this review SCPCT is a minimum of one specialist doctor and one specialist nurse. The eight selected studies reported that when SCPCT's cared for patients requiring EOLC there was a reduction in the admission rates to acute hospital settings in comparison to those who received standard care only. Some studies showed this reduction to be as high as 33% and 34% in the last year of life. With regards to secondary outcomes the studies that evaluated the impact of SCPCT's on emergency department usage and hospital death rates all found that SCPCT's had a positive influence in both areas. With regards to emergency department usage, one study reported the most significant reduction of 51% for patients who had SCPCT compared with those who had not. With regards to hospital death rates, the most significant results found that 39% of patients receiving SCPCT died in hospital compared to 74.8% who did not receive SCPCT. CONCLUSION: This review demonstrates that SCPCT's have a positive impact in reducing acute hospital admissions in adult patients requiring EOLC, however, these results may not be conclusive. Palliative care is a complex intervention with a very diverse population. It is vital therefore that further research and investigation, accounting for the confounding factors that may affect the accuracy of the results, is undertaken.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Adulto , Hospitalização , Hospitais , Humanos , Cuidados Paliativos/métodos
19.
PLoS One ; 17(7): e0270483, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35802571

RESUMO

BACKGROUND: Palliative sedation is used to relieve refractory symptoms and is part of clinical practice in Sweden. Yet we do not know how frequently this practice occurs, how decision-making takes place, or even which medications are preferentially used. OBJECTIVES: To understand the current practice of palliative sedation in Sweden. METHODS: We conducted a retrospective cross-sectional medical record-based study. For 690 consecutive deceased patients from 11 of 12 specialized palliative care units in the southernmost region of Sweden who underwent palliative sedation during 2016, we collected data on whether the patient died during sedation and, for sedated patients, the decision-making process, medication used, and depth of sedation. RESULTS: Eight percent of patients were sedated. Almost all (94%) were given midazolam, sometimes in combination with propofol. The proportions of sedation were similar in the patient groups with and without cancer. The largest proportion of the sedated patients died in inpatient care, but 23% died at home, with specialized palliative home care. Among the patients with a decision to sedate, 42% died deeply unconscious, while for those without such a decision the corresponding figure was 16%. In only one case was there more than one physician involved in the decision to use palliative sedation. CONCLUSION: 8% of patients in specialized palliative care received palliative sedation, which is lower than international measures but much increased compared to an earlier Swedish assessment. The level of consciousness achieved often did not correspond to the planned level; this, together with indications of a scattered decision process, shows a need for clear guidelines.


Assuntos
Sedação Profunda , Neoplasias , Assistência Terminal , Estudos Transversais , Humanos , Hipnóticos e Sedativos/uso terapêutico , Midazolam/uso terapêutico , Neoplasias/tratamento farmacológico , Cuidados Paliativos , Estudos Retrospectivos
20.
BMC Palliat Care ; 21(1): 130, 2022 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-35854257

RESUMO

BACKGROUND AND AIM: Patient deaths are common in the intensive care unit, and a nurse's perception of barriers to and supportive behaviors in end-of-life care varies widely depending upon their cultural background. The aim of this study was to describe the perceptions of intensive care nurses regarding barriers to and supportive behaviors in providing end-of-life care in a Chinese cultural context. METHODS: A cross-sectional survey was conducted among intensive care nurses in 20 intensive care units in 11 general hospitals in central and eastern China. Instruments used in this study were general survey and Beckstrand's questionnaire. Data were collected via online survey platform. Descriptive analysis was used to describe general characteristics of participants and mean and standard deviations of the barriers and supportive behaviors. The mean and standard deviation were used to describe the intensity and frequency of each barrier or supportive behavior following Beckstrand's method to calculate the score of barriers and supportive behaviors. Content analysis was used to analyze the responses to open-ended questions. RESULTS: The response rate was 53% (n = 368/700). Five of the top six barriers related to families and the other was the nurse's lack of time. Supportive behaviors included three related to families and three related to healthcare providers. Nurses in the intensive care unit felt that families should be present at the bedside of a dying patient, there is a need to provide a quiet, independent environment and psychological support should be provided to the patient and family. Nurses believe that if possible, families can be given flexibility to visit dying patients, such as increasing the number of visits, rather than limiting visiting hours altogether. Families need to be given enough time to perform the final rites on the dying patient. Moreover, it is remarkable that nurses' supportive behaviors almost all concern care after death. CONCLUSIONS: According to ICU-nurses family-related factors, such as accompany of the dying patients and acceptence of patient's imminent death, were found the major factors affecting the quality of end-of-life care. These findings identify the most prominent current barriers and supportive behaviors, which may provide a basis for addressing these issues in the future to improve the quality of end-of-life care.


Assuntos
Enfermeiras e Enfermeiros , Assistência Terminal , Atitude do Pessoal de Saúde , Cuidados Críticos/psicologia , Estudos Transversais , Humanos , Unidades de Terapia Intensiva , Inquéritos e Questionários , Assistência Terminal/métodos
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