End-of-life care pathways for improving outcomes in caring for the dying.
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ABSTRACT:
SUBMITTER: Chan RJ
PROVIDER: S-EPMC6483701 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Most cancer patients still die in hospital, mainly in medical wards. Many studies in different countries have shown the poor quality of end-of-life care delivery in hospitals. The Program "Liverpool Care Pathway for the dying patient" (LCP), developed in the UK to transfer the hospice model of care into hospitals and other care settings, is a complex intervention to improve the quality of end-of-life care. The results from qualitative and quantitative studies suggest that the LCP Program can improve significantly the quality of end-of-life care delivery in hospitals, but no randomised trial has been conducted till now.This is a randomized cluster trial, stratified by regions and matched for assessment period. Pairs of eligible medical wards from different hospitals will be randomized to receive the LCP-I Program or no intervention until the end of the trial. The LCP-I Program will be implemented by a Palliative Care Unit.The assessment of the end-points will be performed for all cancer deaths occurred in the six months after the end of the LCP-I implementation in the experimental wards and, in the same period of time, in the matched control wards. The primary end-point is the overall quality of end-of-life care provided on the ward to dying cancer patients and their families, assessed using the Global Scale of the Italian version of the Toolkit "After-death Bereaved Family Member Interview".This study can be interpreted as a Phase III trial according to the Medical Research Council Framework. In this study, the effectiveness of a fully defined intervention is assessed by comparing the distribution of the endpoints in the experimental and in the control arm. RESEARCH ID: RFPS-2006-6-341619ClinicalTrials.gov Identifier: NCT01081899.
| S-EPMC3040703 | biostudies-literature
Project description:BackgroundHigh-quality end-of-life care should be the right of every Canadian. The objective of this study was to identify aspects of end-of-life care that are high in priority as targets for improvement using feedback elicited from patients and their families.MethodsWe conducted a multicentre, cross-sectional survey involving patients with advanced, life-limiting illnesses and their family caregivers. We administered the Canadian Health Care Evaluation Project (CANHELP) questionnaire along with a global rating question to measure satisfaction with end-of-life care. We derived the relative importance of individual questions on the CANHELP questionnaire from their association with a global rating of satisfaction, as determined using Pearson correlation coefficients. To determine high-priority issues, we identified questions that had scores indicating high importance and low satisfaction.ResultsWe approached 471 patients and 255 family members, of whom 363 patients and 193 family members participated, with response rates of 77% for patients and 76% for families. From the perspective of patients, high-priority areas needing improvement were related to feelings of peace, to assessment and treatment of emotional problems, to physician availability and to satisfaction that the physician took a personal interest in them, communicated clearly and consistently, and listened. From the perspective of family members, similar areas were identified as high in priority, along with the additional areas of timely information about the patient's condition and discussions with the doctor about final location of care and use of end-of-life technology.InterpretationEnd-of-life care in Canada may be improved for patients and their families by providing better psychological and spiritual support, better planning of care and enhanced relationships with physicians, especially in aspects related to communication and decision-making.
| S-EPMC2972350 | biostudies-literature
Project description:Although stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke.To study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer.This study is a retrospective, comparative registry study.A retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI.Compared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to end-of-life care and of their family members being offered bereavement follow-up.The results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary.
| S-EPMC4742254 | biostudies-other
Project description:BACKGROUNDAs in other areas of health delivery, there is a need to ensure that end-of-life care is guided by patient centred research. A systematic review was undertaken to examine the quantity and quality of data-based research aimed at improving the (a) processes and (b) outcomes associated with delivering end-of-life care in hospital settings.METHODSMedline, EMBASE and Cochrane databases were searched between 1995 and 2015 for data-based papers. Eligible papers were classified as descriptive, measurement or intervention studies. Intervention studies were categorised according to whether the primary aim was to improve: (a) end of life processes (i.e. end-of-life documentation and discussions, referrals); or (b) end-of-life outcomes (i.e. perceived quality of life, health status, health care use, costs). Intervention studies were assessed against the Effective Practice and Organisation of Care methodological criteria for research design, and their effectiveness examined.RESULTSA total of 416 papers met eligibility criteria. The number increased by 13% each year (p?<?0.001). Most studies were descriptive (n?=?351, 85%), with fewer measurement (n?=?17) and intervention studies (n?=?48; 10%). Only 18 intervention studies (4%) met EPOC design criteria. Most reported benefits for end-of-life processes including end-of-life discussions and documentation (9/11). Impact on end-of-life outcomes was mixed, with some benefit for psychosocial distress, satisfaction and concordance in care (3/7).CONCLUSIONMore methodologically robust studies are needed to evaluate the impact of interventions on end-of-life processes, including whether changes in processes translate to improved end-of-life outcomes. Interventions which target both the patient and substitute decision maker in an effort to achieve these changes would be beneficial.
| S-EPMC5438503 | biostudies-literature
Project description:BACKGROUND:While disparities in end-of-life care have been well-documented, explanations for the persistence of disparities are less clear. This study sought to examine diverse perceptions of end-of-life care, especially regarding how medical professionals can better serve all populations. OBJECTIVE:To investigate similarities and differences in end-of-life care preferences, across racial and ethnic groups. DESIGN:This work consists of a qualitative study utilizing in-depth focus group discussions. SETTING/PARTICIPANTS:Six community-based focus groups were conducted with a total of 39 participants. Two groups were composed of African American participants, 2 had Latino participants, and 2 groups had white participants. RESULTS:Analysis produced 3 major themes: (1) clear, comprehensive, and culturally relevant provider-patient communication regarding serious illness; (2) provider characteristics and competency; and (3) health system supports and barriers. Although all groups had individuals who expressed a strong preference for direct communication, individuals varied within groups. All groups discussed concerns that the costs of care are high and that financial considerations are given more importance than high-quality care. Groups diverged in their focus on provider characteristics and feelings of marginalization. African American and Latino groups emphasized a desire to match characteristics with providers, and African American groups discussed that their marginalization in the health-care system requires hypervigilance to receive high-quality care. CONCLUSIONS:Improvements in care would come from acknowledging diversity within groups, provider demonstration of comfort and competence, more effective care coordination, and recruitment of providers who share similar characteristics with the communities they serve.
| S-EPMC6786269 | biostudies-literature
Project description:BackgroundImproving palliative and end-of-life care for people with dementia is a growing priority globally. This study aimed to integrate multiple perspectives on end-of-life care for people with dementia and carers, to identify clinically relevant areas for improvement.MethodsThe mixed-methods study involved surveys, interviews, and workshops with two participant groups: healthcare professionals and carers (individuals who provided care and support to a family member or friend). Healthcare professionals were invited to complete an online adapted version of the Australian Commission on Safety and Quality in Health Care, End-of-Life Care Toolkit: Clinician Survey Questions. Carers completed a hard copy or online adapted version of the Views of Informal Carers-Evaluation of Services (Short form) (VOICES-SF) questionnaire. Interview schedules were semi-structured, and workshops followed a co-design format. Findings were integrated narratively using a weaving approach.ResultsFive areas in which we can improve care for people with dementia at the end of life, were identified: 1) Timely recognition of end of life; 2) Conversations about palliative care and end of life; 3) Information and support for people with dementia and carers; 4) Person-and-carer-centred care; 5) Accessing quality, coordinated care.ConclusionsThere are multiple areas where we can improve the quality of end-of-life care people with dementia receive. The findings demonstrate that the heterogeneous and challenging experiences of living with and caring for people with dementia necessitate a multidisciplinary, multifaceted approach to end-of-life care. The identified solutions, including care coordination, can guide local development of co-designed models of end-of-life care for people with dementia.
| S-EPMC10825990 | biostudies-literature
Project description:PurposeThe Act on Hospice and Palliative Care and Decisions on Life-Sustaining Treatment for Patients at the End of Life came into force in February 2018 in Korea. This study reviews the practices of end-of-life care for patients who withdrew or withheld lifesustaining treatment at a tertiary care hospital, addresses the limitations of the law, and discusses necessary steps to promote patient-centered self-determination.MethodsWe retrospectively analyzed the medical records of patients who died after agreeing to withhold lifesustaining treatment in 2018 at our university hospital. The cause of death, the intensity of end-of-life care, and other characteristics were reviewed and statistically analyzed.ResultsOf a total of 334 patients, 231 (69%) died from cancer. The decision to stop life-sustaining treatment was made by family members for 178 patients overall (53.3%) and for 101 (43.7%) cancer patients, regardless of the patient's wishes. When the patient decided to stop lifesustaining treatment, the time from the authorization to withhold life-sustaining treatment to death was longer than when the decision was made by family members (28.7±41.3 vs 10.5±23.2 days, P<0.001).ConclusionIn many cases, the decision to discontinue lifesustaining treatment was made by the family, not by the patient. In order to protect human dignity based on the patients' self-determination, it is necessary for patients to understand their disease based on careful explanations from physicians. Ongoing survey-based research will be necessary in the future.
| S-EPMC10332712 | biostudies-literature
Project description:BackgroundDeath resulting from COVID-19 in a hospital during the pandemic has meant death in isolation. Although many health care providers (HCPs) have struggled with end-of-life (EOL) care for these patients, the various strategies across hospitals are not well known.Research questionWhat EOL care did HCPs give patients dying of COVID-19 and their families in hospitals during the COVID-19 pandemic? What were the key themes in care?Study design and methodsThis qualitative study used individual, semistructured, internet, and face-to-face interviews. We recruited HCPs who provided EOL care to patients with COVID-19 dying in hospitals and their families. Purposive sampling was used through the academic networks at the School of Public Health, Kyoto University. Anonymized verbatim transcripts were analyzed thematically.ResultsFifteen doctors and 18 nurses from 23 hospitals in 13 regions across Japan participated; 16 participants (48%) were women, with an age range of 20 to 59 years (most were 30-39 years of age). Participants described 51 strategies, including providing physical and psychological-spiritual care, making connections, providing death care, and arranging care environments and bereavement care for patients and their families. Four themes emerged as prominent efforts in COVID-19 EOL care: maintaining relationships with isolated patients, connecting patients and families, sharing decision-making in isolation, and creating humanistic episodes.InterpretationProper application and awareness of the four themes may help HCPs to implement better EOL care. To compensate for limited memories resulting from isolation and rapid progression of the disease, communicating and creating humanistic episodes are emphasized. ICU diaries and the HCPs' arrangements based on cultural funerary procedures could be provided as grief care for the family and to build trust. EOL education and building partnerships among palliative care staff and nonmedical personnel on a regular basis may enhance the capacity to deliver the necessary support for EOL care.
| S-EPMC9576251 | biostudies-literature
Project description:Background'Most patients want to die at home' is a familiar statement in palliative care. The rate of home deaths is therefore often used as a success criterion. However, providing palliative care and enabling patients to die at home in rural and remote areas may be challenging due to limited health care resources and geographical factors. In this study we explored health care professionals' experiences and reflections on providing palliative care to patients at the end of life in rural Northern Norway.MethodsThis is a qualitative focus group and interview study in rural Northern Norway including 52 health care professionals. Five uni-professional focus group discussions were followed by five interprofessional focus group discussions and six individual interviews. Transcripts were analysed thematically.ResultsHealth care professionals did their utmost to fulfil patients' wishes to die at home. They described pros and cons of providing palliative care in rural communities, especially their dual roles as health care professionals and neighbours, friends or even relatives of patients. Continuity and carers' important contributions were underlined. When home death was considered difficult or impossible, nurses expressed a pragmatic attitude, and the concept of home was extended to include 'home place' in the form of local health care facilities.ConclusionsProviding palliative care in patients' homes is professionally and ethically challenging, and health care professionals' dual roles in rural areas may lead to additional pressure. These factors need to be considered and addressed in discussions of the organization of care. Nurses' pragmatic attitude when transfer to a local health care facility was necessary underlines the importance of building on local knowledge and collaboration. Systematic use of advance care planning may be one way of facilitating discussions between patients, family carers and health care professionals with the aim of achieving mutual understanding of what is feasible in a rural context.
| S-EPMC10698939 | biostudies-literature
Project description:We explore how and why the Liverpool Care Pathway (LCP) for the dying patient was transferred to 20 countries beyond the UK, and with what consequences for policy and practice. Our paper synthesises findings from 95 publications contained in a historical narrative literature review on the implementation of the LCP outside the United Kingdom, alongside data from 18 qualitative interviews with 19 key actors involved with the LCP in 14 countries. We use the review to explore the timelines and patterns of development and implementation in the specific countries, to consider what forms of research and evaluation about the LCP were undertaken to establish its effectiveness, and to summarise the resulting findings and their consequences. We use the interviews to gain insights into the elements, processes and dynamics that shaped the transfer and translation of the LCP from one location to another, across national boundaries. Using six questions from the policy transfer literature we then explain who were the key actors involved; what was transferred; from where lessons were drawn; the different degrees of transfer that took place; what restricted or facilitated transfer; and how transfer was related to 'success' or 'failure'. We conclude that the spread of the LCP took place mostly in prosperous countries, and was sustained over around 15 years. It took in differing geographies and cultures, and a variety of linguistic, policy and practice contexts. If it did not succeed in a wider transformational goal, it appears to have been well received and perceived as beneficial in many contexts, largely avoiding accusations of mis-use and harm that had occurred in the UK, and in some cases fostering a sustained international collaboration and ongoing use of local variants, even after withdrawal in its country of origin in 2014.
| S-EPMC7726848 | biostudies-literature