Context: Researchers, hospices, and government agencies administer standardized questionnaires to caregivers for assessing end-of-life care quality. Caregiving experiences may influence end-of-life care quality reports, which have implications for caregiver outcomes, and are a clinical and policy priority.
Objectives: This study aims to determine whether and how caregivers' end-of-life care assessments depend on their burden and benefit perceptions.
Methods: This study analyzes data from 391 caregivers in the 2011 National Study of Caregiving and their Medicare beneficiary care recipients from the 2011–2016 National Health and Aging Trends Study. Caregivers assessed five end-of-life care aspects for decedents. Logistic regression was used and predicted probabilities of caregivers positively or negatively assessing end-of-life care based on their burden and benefit experiences calculated. Analyses adjusted for caregiver and care recipient demographic and health characteristics.
Results: No or minimal caregiving burden is associated with =0.70 probability of caregivers reporting they were always informed about the recipient's condition and that the dying person's care needs were always met, regardless of perceived benefits. High perceived caregiving benefit is associated with =0.80 probability of giving such reports, even when perceiving high burden.
Conclusion: Caregiver burden and benefit operate alongside one another regarding two end-of-life care evaluations, even when years elapse between caregiver experience reports and care recipient death. This suggests that caregiver interventions reducing burden and bolstering benefits may have a positive and lasting impact on end-of-life care assessments.
Dealing with death and bereavement in the context of the Covid-19 Pandemic will present significant challenges for at least the next three months. The current situation does not allow for families andbcommunities to be involved in the process of death in ways in which they would normally hope or expect to be. In addition, mortality rates will disproportionately affect vulnerable households. The government has identified the following communities as being at increased risk: single parent households; multi-generational Black and Minority Ethnic groups; men without degrees in lone households and/or in precarious work; small family business owners in their 50s; and elderlyhouseholds. Our study focused on these groups. This report presents a summary of findings and key recommendations by a team of anthropologists from the London School of Economics who conducted a public survey and 58 cross-community interviews between 3 and 9 April 2020. It explores ways to prepare these communities and households for impending deaths with communications and policy support. More information on the research methodology, data protection and ethical procedures is available in Appendix 1. A summary of relevant existing research can be found in Appendix 2. A list of key contacts across communities for consultation is available on request. Research was focused on “what a good death looks like” for people across all faiths and for vulnerable groups. It examined how communities were already adapting how they dealt with processes of dying, burials, funerals and bereavement during the pandemic, and responding to new government regulations. It specifically focused on five transitions in the process of death, and what consultation processes, policies and communications strategies could be mobilised to support communities through these phases.
Essai d'une approche comparative entre le droit français et le droit sénégalais. L'une des particularités du 21e siècle durant ces dernières décennies est indéniablement le progrès scientifique qui a réalisé de grandes prouesses dans plusieurs domaines, comme celui de la médecine. La personne humaine est au coeur de ces bouleversements scientifiques et la question de sa vulnérabilité se pose lorsqu'il s'agit plus particulièrement de l'enfant malade.
Au-delà des traitements médicaux, la protection de l'enfant malade implique une prise en compte de la recherche médicale et comporte dès lors des enjeux internationaux qui méritent une étude comparative notamment entre le droit français et le droit sénégalais.
"Papa, Maman, Faustine, ne vous inquiétez pas pour moi, je n'ai pas peur. Prenez soin de vous. Je vous aime." Ces mots sont ceux d'Emilie. Elle les écrit lorsqu'elle apprend qu'après deux années de combat contre le cancer, plus aucun traitement ne peut prolonger sa vie. A travers ces quelques mots, elle donne une leçon de vie à sa famille et à ses proches : elle fait le choix d'être heureuse pendant le peu de temps qui lui reste à vivre.
Elle souhaite partager son enjouement, son courage et sa force avec ceux qui l'ont toujours aimée et soutenue. Jusqu'où ira-t-elle dans le combat qu'elle mène contre la maladie ? Comment vivra-t-elle ses derniers instants ? Ses proches réussiront-ils à accepter la situation et à surmonter cette douloureuse épreuve ?
Cadavre : corps mort, tout être vivant est destiné à le devenir. Est-ce pour autant la fin de la vie ? Non, si c'était le cas nous ne laisserions pas une chose inerte après notre passage sur Terre. Cette chose incapable de s'exprimer a pourtant tant à raconter : un deuil, un héritage, un souvenir oublié, un revenant, une valeur chiffrable... En voici treize de leurs histoires, à ces cadavres si bavards !
Doctors, nurses, and family caregivers worldwide are facing tough decisions concerning the supply and administration of medications to manage symptoms when patients are dying from covid-19 or other conditions in the community or care homes. Proposed changes in practice aimed at ensuring adequate end-of-life symptom control need careful consideration alongside appropriate training and support.
Updated UK advice, including NICE rapid guidance on managing covid-19 symptoms in the community, reiterates the importance of prescribing medications in advance of need for pain, nausea and vomiting, agitation, and respiratory secretions. These drugs may be administered if needed by visiting doctors or nurses, as is already well established in some countries. However, this practice is being overhauled radically in response to the pandemic.
Background: A better understanding of differences between the preferences of the general public and the recommendations of healthcare providers with regard to end-of-life (EOL) care may facilitate EOL discussion.
Methods: The aim of this study was to clarify differences between preferences of the general public and recommendations of healthcare providers with regard to treatment, EOL care, and life-sustaining treatment (LST) based on a hypothetical scenario involving a patient with advanced cancer. This study comprised exploratory post-hoc analyses of “The Survey of Public Attitude Towards Medical Care at the End of life”, which was a population based, cross-sectional anonymous survey in Japan to investigate public attitudes toward medical care at the end of life. Persons living in Japan over 20 years old were randomly selected nationwide. Physicians, nurses, and care staff were recruited at randomly selected facilities throughout Japan. The general public data from the original study was combined to the data of healthcare providers in order to conduct exploratory post-hoc analyses. The preferences of the general public and recommendations of healthcare providers with regard to EOL care and LST was assessed based on the hypothetical scenario of an advanced cancer patient.
Results: All returned questionnaires were analyzed: 973 from the general public, 1039 from physicians, 1854 from nurses, and 752 from care staff (response rates of 16.2, 23.1, 30.9, and 37.6%, respectively). The proportion of the general public who wanted “chemotherapy or radiation”, “ventilation”, and “cardiopulmonary resuscitation” was significantly higher than the frequency of these options being recommended by physicians, nurses, and care staff, but the general public preference for “cardiopulmonary resuscitation” was significantly lower than the frequency of its recommendation by care staff.
Conclusion: Regarding a hypothetical scenario for advanced cancer, the general public preferred more aggressive treatment and more frequent LST than that recommended by healthcare providers.
Coronavirus-19 disease (COVID-19) has quickly spread to cause a global pandemic, and produces a spectrum of disease from mild respiratory illness to severe acute respiratory distress syndrome. Current estimates indicate that 15% of patients with COVID-19 will develop severe disease, and 5 to 10% will require intensive care-level support. In certain scenarios, escalation of life-sustaining therapies (defined as intubation, mechanical ventilation,vasopressor support, and/or hemodialysis) will either not be within the patient’s goals of care, or will unfortunately be unsuccessful. Overall mortality risk from COVID-19is estimated to be between 3 and 5%.
Background: Providing end of life care (EoLC) is an important aspect of primary care, which reduces the risk of hospital admission for most patients. However, general practitioners (GPs) seem to have low confidence in their ability to provide EoLC. Little is known about an adequate volume and kind of training in EoLC among GP trainees.
Methods: We performed a before-after comparison in all post-graduate GP trainees who were registered in the vocational training program (KWBW VerbundweiterbildungPLUS). They were offered participation within a two-day seminar focussing on palliative care in 2017. Those who attended the seminar (intervention group I) completed a paper-based questionnaire directly before the intervention (T1) and 6 months after (T2). None-attendees (group C) were also asked to fill out the questionnaire once. The questionnaire covered previous experiences in palliative care, self-assessment of competencies in EoLC in the organisation of patient care as well as in control of symptoms, attitudes towards death and caring for dying patients and questions about GPs’ role in EoLC.
Results: In total, 294 GP trainees (I: n = 219; C: n = 75) participated in the study. Of those, more than 90% had previously gained experience in EoLC mainly during vocational training in the hospital rotation. Around a third had previously gained competencies in EoLC in medical school. Between groups I (T1) and C no significant differences were observed in socio-demographic characteristics, pre-existing experience or overall expertise. At T2, 75% of participants of group I declared they have extended their competencies in EoLC after the intervention and 70% classified the intervention as helpful or very helpful. Overall, they rated their competencies significantly higher than at T1 (p < 0.01). In detail, competencies in organisation of EoLC and competencies in handling of symptoms significantly improved (p < 0.01). Due to the intervention, 66% could reflect their attitudes towards dying, death and grief and 18% changed their attitudes. Group I highlighted palliative care as one of GPs tasks (Likert 4.47/5, SD 0.75).
Conclusions: The intervention fostered personal competencies, understanding and self-confidence in EoLC among GP trainees. This is crucial for the aim to broadly provide EoLC.
Background: Socioeconomic inequalities in access to, and utilization of medical care have been shown in many jurisdictions. However, the extent to which they exist at end-of-life (EOL) remains unclear.
Methods: Studies in MEDLINE, EMBASE, CINAHL, ProQuest, Web of Science, Web of Knowledge, and OpenGrey databases were searched through December 2019 with hand-searching of in-text citations. No publication date or language limitations were set. Studies assessing SES (e.g. income) in adults, correlated to EOL costs in last year(s) or month(s) of life were selected. Two independent reviewers performed data abstraction and quality assessment, with inconsistencies resolved by consensus.
Results: A total of twenty articles met eligibility criteria. Two meta-analyses were performed on studies that examined total costs in last year of life – the first examined costs without adjustments for confounders (n = 4), the second examined costs that adjusted for confounders, including comorbidities (n = 2). Among studies which did not adjust for comorbidities, SES was positively correlated with EOL costs (standardized mean difference, 0.13 [95% confidence interval, 0.03 to 0.24]). However, among studies adjusting for comorbidities, SES was inversely correlated with EOL expenditures (regression coefficient, -$150.94 [95% confidence interval, -$177.69 to -$124.19], 2015 United States Dollars (USD)). Higher ambulatory care and drug expenditure were consistently found among higher SES patients irrespective of whether or not comorbidity adjustment was employed.
Conclusion: Overall, an inequality leading to higher end-of-life expenditure for higher SES patients existed to varying extents, even within countries providing universal health care, with greatest differences seen for outpatient and prescription drug costs. The magnitude and directionality of the relationship in part depended on whether comorbidity risk-adjustment methodology was employed.
Purpose: Life-sustaining treatment (LST) decisions for patients and caregivers at the end-of-life (EOL) process are supported by the “Act on Hospice and Palliative Care and Decisions on LST for Patients at the EOL,” enforced in February 2018. It remains unclear whether the act changes EOL decisions and LST implementation in clinical practice. For this study, we investigated patients’ decision-making regarding LSTs during the EOL process since the act’s enforcement.
Materials and Methods: Retrospective reviews were conducted on adult patients who were able to decide to terminate LST and died at Seoul National University Hospital between February 5, 2018, and February 5, 2019. We examined demographics, who made the decisions, the type and date of documentation confirming patient's LST, and whether the LST was withheld or withdrawn.
Results: Of 809 patients who were enrolled, 29% (n=231) completed forms regarding LST themselves, and 71% (n=578) needed family members to decide. The median time from confirmation of the EOL process to death and from the Advance Statement to death were 2 and 5 days, respectively (both ranges, 0 to 244). In total, 90% (n=727) of patients withheld treatment, and 10% (n=82) withdrew it. We found a higher withdrawal rate when family members made the decisions (13.3% vs. 1.7%, p < 0.001).
Conclusion: After the act’s enforcement, withdrawing LSTs became lawful and self-determination rates increased. Family members still make 71% of decisions regarding LSTs, but these are often inconsistent with the patients’ wishes; thus, further efforts are needed to integrate the new act into clinical practice.
Purpose: We studied the prevalence of medications of questionable benefit in the last 6 months of life among older nursing home residents with and without dementia in Germany.
Methods: a retrospective cohort study was conducted on claims data from 67,328 deceased nursing home residents aged 65+ years who were admitted between 2010 and 2014. We analyzed prescription regimens of medications of questionable benefit in the 180–91-day period and the 90-day period prior to death for residents with dementia (n = 29,052) and without dementia (n = 38,276). Factors associated with new prescriptions of medications of questionable benefit prior to death were analyzed using logistic regression models among all nursing home residents and stratified by dementia.
Results: A higher proportion of nursing home residents with dementia were prescribed at least one medication of questionable benefit in the 180–91-day (29.6%) and 90-day (26.8%) periods prior to death, compared with residents without dementia (180–91 days, 22.8%; 90 days, 20.1%). Lipid-lowering agents were the most commonly prescribed medications. New prescriptions of medications of questionable benefit were more common among residents with dementia (9.8% vs. 8.7%). When excluding anti-dementia medication, new prescriptions of these medications were more common among residents without dementia (6.4% vs. 8.0%). The presence of dementia (odds ratio [OR] 1.40, 95% confidence interval [95%CI] 1.32–1.48) and excessive polypharmacy were associated with new prescriptions of medications of questionable benefit prior to death (OR 4.74, 95%CI 4.15–5.42).
Conclusion: even when accounting for anti-dementia prescriptions, the prevalence of nursing home residents with dementia receiving medications of questionable benefit is considerable and may require further attention.
Objective: Women with advanced gynecologic cancer and malignant bowel obstruction (MBO) undergo repeated hospitalizations, experience feelings of isolation and abandonment, and often die in acute settings. Innovative outpatient models of care are needed to address the unmet needs of this population at the end-of-life. We implemented a novel supported self-management (SMS) program focused on increasing patients' skill and confidence in managing MBO proactively in the ambulatory setting.
Methods: We performed a qualitative descriptive study embedded in a prospective single-arm evaluative trial (Clinicaltrials.gov ID: NCT03260647) to understand the impact of this program on patients' sense of support, degree of distress, quality of care, and capacity to self-manage. Semi-structured interviews were completed and analysed using the Chronic Care Model as a theoretical framework. Data saturation was confirmed after 15 interviews.
Results: Fifteen patients (age range: 47–82) with diagnoses of advanced ovarian, endometrial, and cervical cancer were interviewed; 10 had died by end of follow-up, with a median interval from interview to death of 5 months. Patients were able to self-manage the: (i) medical aspects; (ii) psychological consequences, and (iii) changes in life roles and expectations resulting from their condition. Patients felt greatly supported, less isolated, and secure in their knowledge and ability to access care due to SMS. While patients understood their disease was not curative they did not fully appreciate that MBO signalled a significantly poorer prognosis.
Conclusion: Outpatient SMS interventions can be successfully implemented even for rapidly fatal conditions at the end-of-life and offer significant benefit to gynecologic cancer patients with MBO. Counselling should focus on the specific trajectory of MBO, and early palliative care referrals should be standard practice.
Context and Objectives: The myriad of benefits of early palliative care (PC) integration in oncology are well established, and emerging evidence suggests that PC improves symptom burden, mood, and quality of life for hematopoietic cell transplant (HCT) recipients. Specific impact of PC consultation on outcomes of older allogeneic HCT (allo-HCT) recipients, a historically high-risk population vulnerable to transplant-related complications and mortality, has not been explored.
Design and Methods: In this single institution, retrospective analysis of 527 first allo-HCT recipients aged =60 years, we characterized 75 patients who had received post-HCT PC consultation and its association with geriatric vulnerabilities identified by pre-HCT geriatric assessment. We also examined end-of-life care outcomes among patients who died within one-year of allo-hematopoietic cell transplantation.
Results: In multivariate analysis, higher disease risk, female gender, and, importantly, pre-HCT functional limitation (hazard ratio 2.35, 95% confidence interval, 1.35–4.09, p = 0.003) were associated with post-HCT PC utilization. Within one-year of hematopoietic cell transplantation, 127 patients died; among those, recipients of early PC consultation had significantly higher rates of hospice enrollment (25% vs. 9%, p = 0.019) and lower rates of hospital death (71% vs. 90%, p = 0.013), intensive care unit admission (44% vs. 75%, p = 0.001), and high-intensity medical care in last 30 days of life (46% vs. 77%, p = 0.001).
Conclusions: Our results highlight important pre-HCT risk factors associated with increased PC needs posthematopoietic cell transplantation and benefits of PC involvement for older allo-HCT recipients at the end of life. Prospective studies should examine the optimal timing of PC consultation and its multidimensional benefits for older allo-HCT patients.
Objectives: Optimal cystic fibrosis (CF) end-of-life care (EOLC) is a challenge. There is little formal guidance about who should deliver this and how CF multi-disciplinary teams should interact with specialist palliative care. We assessed the knowledge, experience and preparedness of both CF and palliative care professionals for CF EOLC.
Methods: An electronic questionnaire was distributed to all members of the Oxford adult CF and palliative care teams.
Results: 35 of a possible 63 members responded (19 CF team; 16 palliative care). Levels of preparedness were low in both groups. Only 11% of CF and 19% of palliative care team members felt fully prepared for EOLC in adult CF. 58% of CF members had no (21%) or minimal (37%) general palliative care training. Similarly, 69% of the palliative care team had no CF-specific training. All respondents desired additional education. CF team members preferred further education in general EOLC while palliative care team members emphasised a need for more CF-specific knowledge.
Conclusions: Few members of either the CF or palliative care teams felt fully prepared to deliver CF EOLC and many desired additional educations. They expressed complementary knowledge gaps, which suggests both could benefit from increased collaboration and sharing of specialist knowledge.
In the last six months of life, 30% of Medicare beneficiaries use the skilled nursing facility (SNF) benefit for post-acute care after a hospital stay. Frequently, the circumstances that indicate a need for SNF care are the same as those of a worsening illness trajectory such as functional decline and falls, unstable health conditions, and pain and other symptoms. The following case example and narrative discussion describes the national implications of this issue and the need for Medicare policy changes that allow for concurrent rehabilitative care and hospice services.
Purpose: Gliomas are primary brain tumors with a life-limiting course of disease, and the last weeks of life are often characterized by neurological deficits that affect communication and personality. End-of-life treatment in this patient group therefore requires specific approaches. To date, little data is available on patients’ and caregivers’ needs and experiences in the last phase of the disease.
Methods: In this observational study, relatives of patients treated at the University Hospital Zurich, Switzerland and deceased 2015–2017 due to glioma progression were contacted to complete a structured questionnaire assessing caregivers experience within the last weeks of the disease.
Results: The survey was sent to 120 relatives of deceased patients with a glioma (WHO grades II–IV) (median patient age: 62 years; 73.8% male). Forty-three questionnaires were returned (37.7%). Approximately half of the patients were taken care of at home in the last 4 weeks of the disease, mainly with the assistance of in-home nursing care, of which eventually 14 patients (63.6%) died at home. While caregivers reported high satisfaction with medical and nursing care, psychological support was rated average to poor on a 10-point scale. Free comment fields were used widely, revealing open questions and needs of the relatives.
Conclusions: This study illustrates the need for a more patient-centered end-of-life care including higher psychological support mechanisms, and a higher inclusion and consideration of relatives and caregivers into the care focus. Earlier discussion of end-of-life preferences could prevent hospitalizations in the last phase of life and could improve patients’ and caregivers’ quality of life.
Purpose: Intensive care unit health care professionals must be skilled in providing end-of-life care. Crucial in this kind of care is end-of-life decision-making, which is a complex process involving a variety of stakeholders and requiring adequate justification. The aim of this systematic review is to analyse papers tackling ethical issues in relation to end-of-life decision-making in intensive care units. It explores the ethical positions, arguments and principles.
Methods: A literature search was conducted in bibliographic databases and grey literature sources for the time period from 1990 to 2019. The constant comparative method was used for qualitative analysis of included papers in order to identify ethical content including ethical positions, ethical arguments, and ethical principles used in decision-making process.
Results: In the 15 included papers we have identified a total of 43 ethical positions. Ten positions were identified as substantive, 33 as procedural. Twelve different ethical principles emerged from the ethical arguments. The most frequently used principles are the principles of beneficence, autonomy and nonmaleficence.
Conclusions: We have demonstrated that recommendations and guidelines designed specifically by intensive or critical care experts for intensive care units promote similar ethical positions, with minimal dissenting positions.
Introduction: Electronic palliative care coordination systems (EPaCCS) aim to support people approaching the end of life (EOL) to receive consistent care, according to their wishes, that is coordinated effectively across multiple care sectors. They are in use across the UK although empirical evidence into their effectiveness is poor. This paper presents a protocol of a mixed-methods study, to understand how, and by whom, EPaCCS are being used and whether EPaCCS are enabling Healthcare Professionals (HCPs) to coordinate patients’ EOL care.
Methods and analysis: This is a mixed-methods study, carried out within a realist paradigm, to evaluate the impact of an EPaCCS on EOL care as provided by a Clinical Commissioning Group (CCG) in England. This study has two aims: (1) Describe the socio-demographic characteristics of patients who die with an EPaCCS record, their underlying cause of death and place of death and compare these with patients who die without an EPaCCS record. (2) Explore the impact of an EPaCCS on the experience of receiving EOL care for patients and their carers, and understand HCPs’ views and experiences of utilising an EPaCCS to coordinate care for their patients. The study will be conducted in five phases: (1) development of the initial programme theory; (2) focus group with CCG stakeholder board; (3) individual interviews with HCPs, patients, current and bereaved carers; (4) retrospective cohort study of routinely collected data on EPaCCS usage and (5) data analysis and synthesis of study findings.
Ethics and dissemination: The study has been approved by National Health Service South West–Frenchay Research Ethics Committee (REC reference number: 18/SW/0198). Findings will be published in a wide range of outputs targeted at key audiences.