Rapidly increasing end-of-life care needs: a timely warning.
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ABSTRACT:
SUBMITTER: Mitchell G
PROVIDER: S-EPMC5502323 | biostudies-other | 2017 Jul
REPOSITORIES: biostudies-other
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Project description:Pediatric end-of-life care (EOL care) entails challenging tasks for health care professionals (HCPs). Little is known about HCPs' experiences and needs when providing pediatric EOL care in Switzerland. This study aimed to describe the experiences and needs of HCPs in pediatric EOL care in Switzerland and to develop recommendations for the health ministry. The key aspect in EOL care provision was identified as the capacity to establish a relationship with the dying child and the family. Barriers to this interaction were ethical dilemmas, problems in collaboration with the interprofessional team, and structural problems on the level of organizations. A major need was the expansion of vocational training and support by specialized palliative care teams. We recommend the development of a national concept for the provision of EOL care in children, accompanied by training programs and supported by specialized pediatric palliative care teams located in tertiary children's hospitals.
| S-EPMC5555493 | biostudies-other
Project description:Background and objectivesDespite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients' preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients' preferences and to help prioritize and guide future innovation in end-of-life care policy.Design, setting, participants, & measurementsA total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008.ResultsParticipants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologist in the past 12 months.ConclusionsCurrent end-of-life clinical practices do not meet the needs of patients with advanced CKD.
| S-EPMC2827591 | biostudies-literature
Project description:BackgroundLiterature suggests a paucity of formal training in end-of-life care in contemporary American medical education. Similar to trainees in adult medicine, paediatric trainees are frequently involved in end-of-life cases.ObjectiveTo determine current experience and comfort levels among paediatric trainees when caring for dying patients with the hypothesis that more clinical experience alone would not improve comfort.MethodsPaediatric residents, subspeciality fellows and programme directors at the University of Chicago completed a voluntary electronic needs assessment in June and July 2013. Ten question pairs determined frequency of experiencing various aspects of end-of-life care in clinical practice and comfort levels during these encounters.Results118 respondents participated (63.8 % response rate): 66.4 % were female; 53 % had previous education in end-of-life care. The proportion of those with experience in end-of-life care increased through the third year of training, and remained at 1.0 thereafter. Conversely, positive comfort scores increased gradually throughout all six years of training to a maximum proportion of 0.45. Comfort in many specific aspects of care lagged behind experience. Previous education had a significant positive effect on comfort levels of most, but not all, aspects of care. 58 % or more of trainees desired further education on specific end-of-life topics.ConclusionsPaediatric trainees are often involved in end-of-life care but may not be comfortable in this role. More experience alone does not improve comfort levels; however, there is a positive correlation with comfort and previous education. Trainees had a strong interest in further education on a variety of end-of-life care topics.
| S-EPMC4348227 | biostudies-literature
Project description:Palliative care access is an urgent and ethical imperative to effectively manage the increasing burden of serious health-related suffering worldwide. Understanding the palliative care educational needs of health care professionals is critical to support evidence-based clinical practice in Rwanda and other low- and middle-income countries. A cross-sectional study was conducted at 5 hospitals in Kigali, Rwanda, to assess the palliative/end-of-life educational needs of nurses and physicians. The End-of-Life Professional Caregiver Survey and a demographic form were used to collect data. Descriptive analyses and independent t tests were conducted. A total of 420 health care professionals participated in the study (response rate, 72%). Participants perceived their knowledge and skills in providing palliative/end-of-life care as low. Those who received palliative/end-of-life care training in the past 5 years, third- and fourth-year residents, and health care providers with 5 years of experience or more had significantly higher (P ≤ .05) mean scores on the End-of-Life Professional Caregiver Survey. Nurses scored higher than physicians in the patient- and family-centered communication (P = .049) and cultural and ethical values (P = .037) subscales. Pain management was identified as an educational need by 77% of participants. Our survey suggests the need for increased governmental investments in palliative/end-of-life care education among nurses and physicians in Rwanda.
| S-EPMC8717681 | biostudies-literature
Project description:ObjectivesTimely multidisciplinary family meetings (TMFMs) promote shared decision-making. Despite guidelines that recommend meetings for all patients with serious illness, our NICU TMFM rate was 10%. In this study, we aimed to document a meeting within 5 days of hospitalization for 50% of all new NICU patients hospitalized for ≥5 days within 1 year of introducing interventions.MethodsA multidisciplinary improvement team used the Model for Improvement to achieve the study aim by targeting key drivers of change. To make meetings easier, we introduced scheduling and documentation tools. To make meetings more customary, we provided education and reminders to professionals. We defined a TMFM as a documented discussion between a parent, a neonatologist, and a nonphysician professional, such as a nurse, within 5 days of hospitalization. We used statistical process control charts to assess the monthly proportion of new patients with a TMFM. In surveys and feedback sessions, family and clinician satisfaction with communication was assessed.ResultsTMFM documentation tripled during the intervention year when compared with the previous year (28 of 267 [10.5%] vs 70 of 224 [31.3%]; P < .001), revealing evidence of special cause variation on the statistical process control chart. Clinicians predominantly used ad hoc documentation instead of our scheduling and documentation tools. Parental satisfaction with care and communication did not vary significantly after interventions. Most physicians reported satisfaction with meetings. Nurses reported feeling empowered to request meetings.ConclusionsAn academic, quaternary-care NICU tripled TMFM documentation after introducing a multifaceted intervention. This improvement may represent changes in professionals' attitudes about providing and documenting family meetings.
| S-EPMC7104716 | biostudies-literature
Project description:AimThis study aimed to develop a "family caregiver needs-assessment scale for end-of-life care for senility at home" (FADE) and examine its reliability and validity.MethodA draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants' basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach's alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity.ResultsIn total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: "Needs for adaptation to senility bereavement" and "Needs for essential skills in supporting a dignified death by senility." The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker-Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach's alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259-0.427 (p<0.001).ConclusionsThe FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce caregivers' anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace.
| S-EPMC6738926 | biostudies-literature
Project description:ImportanceThere is widespread consensus on the challenges to meeting the end-of-life wishes of decedents in the US. However, there is broad but not always recognized success in meeting wishes among decedents 65 years and older.ObjectiveTo assess how well end-of-life wishes of decedents 65 years and older are met in the last year of life.Design, setting, and participantsThis quality improvement study involved 3 planned samples of family members or informants identified as the primary contact in the medical record of Kaiser Permanente Southern California decedents. The first sample was 715 decedents, 65 years or older, who died between April 1 and May 31, 2017. The second was a high-cost sample of 332 decedents, 65 years or older, who died between June 1, 2016, and May 31, 2017, and whose costs in the last year of life were in the top 10% of the costs of all decedents. The third was a lower-cost sample with 655 decedents whose costs were not in the top 10%. The survey was fielded between December 19, 2017, and February 8, 2018.Main outcomes and measuresMeeting end-of-life wishes, discussions with next of kin and physicians, types of discordant care, and perceptions of amount of care received.ResultsSurveys were completed by 715 of the 2281 next of kin in the all-decedent sample (mean [SD] decedent age, 80.9 [8.9] years; 361 [50.5%] male) for a 31% response rate; in 332 of the 1339 next of kin in the high-cost sample (mean [SD] decedent age, 75.5 [7.1] years; 194 [48.4%] male) for a 25% response rate; and in 659 of 2058 in the lower-cost sample (mean [SD] decedent age, 81.6 [8.8] years) for a 32% response rate. Respondents noted that high percentages of decedents received treatment that was concordant with their desires: 601 (88.9%) had their wishes met, 39 (5.9%) received a treatment they did not want, and 554 (84.1%) filled out an advance directive. A total of 509 respondents (82.5%) believed the amount of care was the right amount. Those with the highest costs had their wishes met at lower rates than those with lower costs (250 [80.1%] vs 553 [89.6%]).Conclusions and relevanceIn this Kaiser Permanente Southern California cohort, a large proportion of decedents 65 years and older had end-of-life discussions and documentation, had their wishes met, and received the amount of care they thought appropriate.
| S-EPMC8025115 | biostudies-literature
Project description: Not available
| S-EPMC7124727 | biostudies-literature
Project description:IntroductionPalliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called 'Palliative Care Needs Rounds' (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life.Methods and analysisThis implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4-6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents' quality of death and care home staff capability of adopting a palliative approach.Ethics and disseminationFrenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds.Registration detailsRegistration details: ISRCTN15863801.
| S-EPMC7903098 | biostudies-literature
Project description:BackgroundLesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons.AimTo identify and appraise existing evidence related to the needs, experiences, and preferences for palliative and end of life care among LGBTQ+ individuals with serious illness.DesignData-based convergent synthesis design reported per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Data sourcesPubMed, Embase, Cochrane CENTRAL, PsycINFO, CINAHL, and Scopus from January 1, 2010 to November 6, 2020.ResultsOf 4875 results captured, 69 articles underwent full-text review and 13 were retained for analysis. Most studies were from North America with trans individuals represented in 10 of 13 studies. Needs (n = 6) included increased social support, institutional safety, economic and legal supports, and advocacy to mitigate health barriers.Experiences (n = 12) were driven by fear and worry associated with discrimination/stigma,providers' hetero-/cisnormative assumptions, homophobia and transphobia, social isolation, and an undignified death. Preferences (n = 6) pertained to inclusion of chosen families in decision-making, disclosure of LGBTQ+ identity based on safety of the clinical environment, and a desire to maintain autonomy.ConclusionsThe robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.
| S-EPMC10171330 | biostudies-literature