Facilitating family needs and support at the end of life in hospital: A descriptive study

2021 ◽  
pp. 026921632110664
Author(s):  
Melissa J Bloomer ◽  
Peter Poon ◽  
Fiona Runacres ◽  
Alison M Hutchinson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
General Medicine ◽  
Descriptive Study ◽  
Life Care ◽  
Family Needs ◽  
Next Of Kin ◽  
Dying Patients

Background: Caring for family members of dying patients is a vital component of end-of-life care, yet family members’ needs at the end of life may be unmet. Aim: To explore hospital clinician assessment and facilitation of family needs and practices to support families at the end of life. Design: Descriptive study utilising a retrospective medical record audit. Setting and Sample: Undertaken in a large public hospital, the sample included 200 deceased patients from four specialities; general medicine ( n = 50), intensive care ( n = 50), inpatient palliative care ( n = 50) and aged rehabilitation ( n = 50). Data were analysed according to age; under 65-years and 65-years or over. Results: Deceased patients’ mean age was 75-years, 60% were Christian and Next-of-Kin were documented in 96% of cases. 79% spoke English, yet interpreters were used in only 6% of cases. Formal family meetings were held in 64% of cases. An assessment of family needs was undertaken in 52% of cases, and more likely for those under 65-years ( p = 0.027). Cultural/religious practices were supported/facilitated in only 6% of all cases. Specialist palliative care involvement was more likely for those aged 65-years or over ( p = 0.040) and social work involvement more likely for those under 65-years ( p = 0.002). Pastoral care and bereavement support was low across the whole sample. Conclusions: Prioritising family needs should be core to end-of-life care. Anticipation of death should trigger routine referral to support personnel/services to ensure practice is guided by family needs. More research is needed to evaluate how family needs assessment can inform end-of-life care, supported by policy.

J-HOPE study: Evaluation of end-of-life cancer care in Japan from the perspective of bereaved family members

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9577-9577
Author(s):  
M. Miyashita ◽  
T. Morita ◽  
K. Sato ◽  
S. Tsuneto ◽  
Y. Shima
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Institutional Review Boards ◽  
Life Care ◽  
Knowledge And Skills ◽  
Bereaved Family ◽  
Care Evaluation

9577 Background: The Japan Hospice and Palliative Care Evaluation (J-HOPE) study was conducted in 2007 and 2008. The aim of the study was to evaluate the quality of end-of-life care at regional cancer centers (CCs), inpatient palliative care units (PCUs), and home hospices (HHs) in Japan from the perspective of bereaved family members. Methods: A nationwide cross-sectional mail survey was conducted in 2007 and 2008. The survey was sent to bereaved families 6–18 months after the death of a patient at 56 CCs, 100 PCUs, or 14 HHs. Outcome measures were the good death inventory, the care evaluation scale, and overall satisfaction with care. The protocol of this study was approved by the institutional review boards of each participating institution. Results: Of the 13,181 bereaved family members that received the survey, 8,163 (62%) participants returned their responses. Among bereaved family members, significantly fewer responded that patients were free from physical distress at CCs (50%) than PCUs (80%) and HHs (73%) (P<0.0001). Significantly fewer patients trusted the physicians at CCs (79%) when compared with PCUs (83%) and HHs (88%) (P<0.0001). Significantly fewer patients were valued as people at CCs (83%) than PCUs (93%) and HHs (95%) (P<0.0001). In addition, significantly fewer participants felt physicians should have worked to improve the patients' symptoms more quickly at CCs (55%) when compared with PCUs (78%) and HHs (77%) (P<0.0001). Significantly fewer participants felt nurse should improve their knowledge and skills regarding end-of-life care at CCs (51%) when compared with PCUs (76%) and HHs (78%) (P<0.0001). A total of 51% of participants reported that nurses should improve their knowledge and skills regarding end-of-life care. Finally, significantly fewer participants were satisfied with the end-of-life care provided by CCs (80%) when compared with PCUs (93%) and HHs (94%) (P<0.0001). Conclusions: Overall, the bereaved family members appreciated the end-of-life care provided by CCs, PCUs, and HHs in Japan. However, in some situations, the quality of end-of-life care provided by CCs was lower than that provided by PCUs and HHs. No significant financial relationships to disclose.

scholarly journals Education is an important factor in end-of-life care: results from a survey of Brazilian physicians’ attitudes and knowledge in end-of-life medicine

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Thais Ioshimoto ◽  
Danielle Ioshimoto Shitara ◽  
Gilmar Fernades do Prado ◽  
Raymon Pizzoni ◽  
Rafael Hennemann Sassi ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Medical Schools ◽  
Medical Residency ◽  
Life Care ◽  
Prior Training ◽  
Care Education ◽  
Palliative Care Education ◽  
Dying Patients

Abstract Background According to the Latin America Association for palliative care, Brazil offers only 0.48 palliative care services per 1 million inhabitants. In 2012, no accredited physicians were working in palliative care, while only 1.1% of medical schools included palliative care education in their undergraduate curricula. As a reflection of the current scenario, little research about end-of-life care has been published so that studies addressing this subject in the Brazilian setting are crucial. Methods A cross-sectional study study conducted with students applying for the medical residency of the Federal University of São Paulo were invited to voluntarily participate in an anonymous and self-administered questionnaire survey. The latter included demographic information, attitudes, prior training in end-of-life care, prior end-of-life care experience, the 20-item Palliative Care Knowledge Test (PCKT) and a consent term. Results Of the 3086 subjects applying for residency, 2349 (76%) answered the survey, 2225 were eligible for analysis while 124 were excluded due to incomplete data. Although the majority (99,2%) thought it was important to have palliative care education in the medical curriculum, less than half of them (46,2%) reported having received no education on palliative care. The overall performance in the PCKT was poor, with a mean score of 10,79 (± 3). While philosophical questions were correctly answered (81,8% of correct answers), most participants lacked knowledge in symptom control (50,7% for pain, 57,3% for dyspnea, 52,2% for psychiatric problems and 43,4% for gastrointestinal problems). Doctors that had already concluded a prior residency program and the ones that had prior experience with terminal patients performed better in the PCKT (p < 0,001). The high-performance group (more than 50% of correct answers) had received more training in end-of-life care, showed more interest in learning more about the subject, had a better sense of preparedness, as well as a higher percentage of experience in caring for terminal patients (p < 0,001). Conclusions Our study showed that Brazilian physicians lack not only the knowledge, but also training in end-of-life medicine. Important factors to better knowledge in end-of-life care were prior training, previous contact with dying patients and prior medical residency. Corroborating the literature, for this group, training showed to be a key factor in overall in this area of knowledge. Therefore, Brazilian medical schools and residency programs should focus on improving palliative training, especially those involving contact with dying patients.

scholarly journals Practice Recommendations for End-of-Life Care in the Intensive Care Unit

2020 ◽  
Vol 40 (3) ◽  
pp. 14-22 ◽  
Author(s):  
Hanne Irene Jensen ◽  
Kristin Halvorsen ◽  
Heidi Jerpseth ◽  
Isabell Fridh ◽  
Ranveig Lind
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Life Care ◽  
Family Needs ◽  
High Quality ◽  
Number Of Patients ◽  
The Family

Topic A substantial number of patients die in the intensive care unit, so high-quality end-of-life care is an important part of intensive care unit work. However, end-of-life care varies because of lack of knowledge of best practices. Clinical Relevance Research shows that high-quality end-of-life care is possible in an intensive care unit. This article encourages nurses to be imaginative and take an individual approach to provide the best possible end-of-life care for patients and their family members. Purpose of Paper To provide recommendations for high-quality end-of-life care for patients and family members. Content Covered This article touches on the following domains: end-of-life decision-making, place to die, patient comfort, family presence in the intensive care unit, visiting children, family needs, preparing the family, staff presence, when the patient dies, after-death care of the family, and caring for staff.

48 Junior doctors and end of life care: a systematic review and narrative synthesis

2018 ◽  
Vol 8 (3) ◽  
pp. 378.1-378
Author(s):  
Aamena Bharmal ◽  
Tessa Morgan ◽  
Stephen Barclay
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Empirical Literature ◽  
Junior Doctors ◽  
List Type ◽  
Narrative Synthesis ◽  
Life Care ◽  
Dying Patients

BackgroundNearly 50% of all deaths in the UK occur in hospitals.1 The majority of these patients die in a generalist setting2 where their medical care is predominately provided by junior doctors. There is a growing recognition of a need to embed palliative care into doctors’ training.3Little evidence exists, however, concerning junior doctors’ current experiences of palliative care.AimsTo review the empirical literature between 2000 and 2018 concerning junior doctors experience of and preparation for palliative and end of life care.MethodsSystematic review and narrative synthesis of qualitative and quantitative studies within six databases to find empirical studies on junior doctors experience of adult palliative care in inpatient hospital or hospice settings.ResultsFrom the initial 6308 titles identified, 32 studies met the inclusion criteria with a further five identified from reference searching.Three key themes were identified:‘Significance of death and dying’‘Thrown into the deep end’‘Addressing the gaps’. All the studies provided evidence that junior doctors care for many dying patients very early in their career. Junior doctors do not feel adequately prepared to care for dying patients and feel unsupported when doing so. Junior doctors report emotional distress when caring for their first few dying patients, memories of which continue to affect them throughout their careers. Their attitudes towards end–of–life care varied: some reported it as a privilege while others associated it with a culture of disengagement that stigmatised dying patients.ConclusionsJunior doctors need further support, education and preparation for their exposure to palliative care. Experiential learning, reflective practice and role modelling are described as the most effective ways to learn palliative care and this also teaches them other transferrable skills such as communication, teamwork and professionalism that are vital for their future careers.References. Office for National Statistics Deaths Registered in England and Wales2016.. Gomes B, Higginson I. Where people die (1974–2030): Past trends, future projections and implications for care. Palliative Med2008;22:33–41.. General Medical Council. Tomorrow’s doctors: Recommendations on undergraduate medical education 2002 (2nd ed.). London: GMC.

Building organizational compassion among teams delivering end-of-life care in the intensive care unit: The 3 Wishes Project

2020 ◽  
Vol 34 (9) ◽  
pp. 1263-1273 ◽  
Author(s):  
Meredith Vanstone ◽  
Marina Sadik ◽  
Orla Smith ◽  
Thanh H Neville ◽  
Allana LeBlanc ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Family Members ◽  
Life Care ◽  
Dying Patients ◽  
Qualitative Descriptive

Background: The 3 Wishes Project is a semistructured program that improves the quality of care for patients dying in the intensive care unit by eliciting and implementing wishes. This simple intervention honors the legacy of patients and eases family grief, forging human connections between family members and clinicians. Aim: To examine how the 3 Wishes Project enables collective patterns of compassion between patients, families, clinicians, and managerial leaders in the intensive care unit. Design: Using a qualitative descriptive approach, interviews and focus groups were used to collect data from family members of dying patients, clinicians, and institutional leaders. Unconstrained directed qualitative content analysis was performed using Organizational Compassion as the analytic framework. Setting/participants: Four North American intensive care units, participants were 74 family members of dying patients, 72 frontline clinicians, and 20 managerial leaders. Results: The policies and processes of the 3 Wishes Project exemplify organizational compassion by supporting individuals in the intensive care unit to collectively notice, feel, and respond to suffering. As an intervention that enables and empowers clinicians to engage in acts of kindness to enhance end-of-life care, the 3 Wishes Project is particularly well situated to encourage collective responses to suffering and promote compassion between patients, family members, and clinicians. Conclusions: Examining the 3 Wishes Project through the lens of organizational compassion reveals the potential of this program to cultivate the capacity for people to collectively notice, feel, and respond to suffering. Our data document multidirectional demonstrations of compassion between clinicians and family members, forging the type of human connections that may foster resilience.

scholarly journals Psychiatry and Terminal Illness

2000 ◽  
Vol 45 (2) ◽  
pp. 143-150 ◽  
Author(s):  
Harvey Max Chochinov
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Empirical Studies ◽  
Life Care ◽  
Care Providers ◽  
Psychological Issues ◽  
Dying Patients

Objective: To provide an overview of the palliative care literature salient to the psychiatric aspect of end-of-life care. Method: A literature review was conducted, targeting primarily empirical studies that addressed the following topics: 1) psychological issues pertaining to life-threatening conditions; 2) family issues in the context of palliative care; 3) psychological issues and challenges faced by end-of-life health care providers; and 4) psychiatric disorders, including depression, anxiety, and organic mental disorders, in people with terminal illness. Results: There is a small but emerging literature that can guide psychiatrists in their role of providing care to dying patients. Conclusions: While psychiatry has made tremendous inroads toward providing care to patients throughout the life cycle, its presence is only just beginning to be felt in end-of-life care. Within the domain of palliative care, psychiatry has an expanded and important role to play.

scholarly journals What is the evidence that people with frailty have needs for palliative care at the end of life? A systematic review and narrative synthesis

2019 ◽  
Vol 33 (4) ◽  
pp. 399-414 ◽  
Author(s):  
Daniel Stow ◽  
Gemma Spiers ◽  
Fiona E Matthews ◽  
Barbara Hanratty
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Family Needs ◽  
Psychosocial Needs ◽  
Care Needs ◽  
Critical Phases

Background: The number of older people living and dying with frailty is rising, but our understanding of their end-of-life care needs is limited. Aim: To synthesise evidence on the end-of-life care needs of people with frailty. Design: Systematic review of literature and narrative synthesis. Protocol registered prospectively with PROSPERO (CRD42016049506). Data sources: Fourteen electronic databases (CINAHL, Cochrane, Embase, EThOS, Google, Medline, NDLTD, NHS Evidence, NICE, Open grey, Psychinfo, SCIE, SCOPUS and Web of Science) searched from inception to October 2017 and supplemented with bibliographic screening and reference chaining. Studies were included if they used an explicit definition or measure of frailty. Quality was assessed using the National Institute for Health tool for observational studies. Results: A total of 4,998 articles were retrieved. Twenty met the inclusion criteria, providing evidence from 92,448 individuals (18,698 with frailty) across seven countries. Thirteen different measures or definitions of frailty were used. People with frailty experience pain and emotional distress at levels similar to people with cancer and also report a range of physical and psychosocial needs, including weakness and anxiety. Functional support needs were high and were highest where people with frailty were cognitively impaired. Individuals with frailty often expressed a preference for reduced intervention, but these preferences were not always observed at critical phases of care. Conclusion: People with frailty have varied physical and psychosocial needs at the end of life that may benefit from palliative care. Frailty services should be tailored to patient and family needs and preferences at the end of life.

The Development of the Physicians' End-of-Life Care Attitude Scale

2000 ◽  
Vol 40 (2) ◽  
pp. 323-333 ◽  
Author(s):  
Marcia Levetown ◽  
Bert Hayslip ◽  
Jennifer Peel
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Attitude Scale ◽  
Life Care ◽  
Loved One ◽  
Care Education ◽  
Medical Trainees ◽  
Palliative Care Education ◽  
Dying Patients

The Physicians' End-of-Life Care Attitude Scale (PEAS) was developed as an outcome measure for palliative care education. PEAS assesses the willingness of medical trainees to care for dying patients. Sixty-four Likert-type questions were created on the basis of discussions with focus groups of medical trainees, then administered to sixty-two medical students and residents. Total PEAS scores as well as personal preparation and professional role subscales (where higher scores indicated greater concern) possessed excellent internal consistency and reliability. In addition, there were substantial correlations between PEAS scores and the CA-Dying scale, a measure of laypersons' fears about interacting with dying persons. Thus, PEAS adequately assesses the unique communication concerns of physicians in training regarding working with dying persons and their families. Correlations between PEAS scores and age were negative, while those who had experienced the death of a loved one had higher PEAS scores than those who did not. This suggests that for some persons, life experiences may lessen difficulties in dealing with dying persons, while for others, personal losses may exacerbate such concerns. The utility of PEAS in evaluating the efficacy of palliative care education as well as its potential to measure medical trainee's willingness to care for the terminally ill is discussed.

scholarly journals End-of-life care in a psychiatric hospital

2016 ◽  
Vol 40 (3) ◽  
pp. 149-152 ◽  
Author(s):  
Lauren Z. Waterman ◽  
David Denton ◽  
Ollie Minton
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Psychiatric Hospital ◽  
End Of Life Care ◽  
Care Pathway ◽  
Life Care ◽  
Staff Members ◽  
Dying Patients ◽  
Care Guidelines ◽  
The Uk

SummarySince the Liverpool Care Pathway has been withdrawn in the UK, clinicians supporting the palliative needs of patients have faced further challenges, particularly for patients with dementia who are unable to go to a hospice owing to challenging behaviours. It is becoming more important for different services to provide long-term palliative care for patients with dementia. Mental health trusts should construct end-of-life care policies and train staff members accordingly. Through collaborative working, dying patients may be kept where they are best suited. We present the case study of a patient who received end-of-life care at a psychiatric hospital in the UK. We aim to demonstrate how effective end-of-life care might be provided in a psychiatric hospital, in accordance with recent new palliative care guidelines, and highlight potential barriers.

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