Dataset Information

Discussing end of life wishes - the impact of community interventions?

ABSTRACT:

Background

Many people do not discuss end of life preferences with those closest to them, although this can be beneficial to the individual and wider population. This study evaluated a community intervention to promote end of life preparation and discussion among people who are currently well.

Methods

A series of presentations and workshops (the intervention) were delivered to community groups and people working within health and social care. Participants were invited to complete a three-stage follow-up survey at Baseline, Post intervention and at three months' follow-up.

Results

Baseline questionnaires were completed by 498 individuals. Overall, 51% reported talking with close family or friends about their end of life care and 58% reported talking about what they would like to happen after their death. There was a significant positive relationship between increasing age group and having talked about end of life wishes. The majority of participants were already comfortable in talking about end of life (overall mean score 8.28/10). Post intervention, 73% stated that they planned to take action including 61% who planned a specific conversation and 55% who planned another action. At follow-up 64% reported that they had taken some action due to the intervention, including 43% who had talked about their own end of life preferences and 39% who had taken some other action.

Conclusions

Well-designed community-based interventions can be successful in prompting people to consider and discuss their end of life preferences.

SUBMITTER: Abba K

PROVIDER: S-EPMC6407206 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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Publications

Discussing end of life wishes - the impact of community interventions?

Abba Katharine K Lloyd-Williams Mari M Horton Siobhan S

BMC palliative care 20190307 1

<h4>Background</h4>Many people do not discuss end of life preferences with those closest to them, although this can be beneficial to the individual and wider population. This study evaluated a community intervention to promote end of life preparation and discussion among people who are currently well.<h4>Methods</h4>A series of presentations and workshops (the intervention) were delivered to community groups and people working within health and social care. Participants were invited to complete ...[more]

PMID: 30845931

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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.

Project description:Patient- and family-centered end-of-life care can be difficult to achieve in light of visitation restrictions and infection-prevention measures. We evaluated how the 3 Wishes Program evolved to allow continued provision of compassionate end-of-life care for critically ill patients during the coronavirus disease 2019 pandemic.DesignThis is a prospective observational study where data were collected 1 year prior to the coronavirus disease 2019 pandemic and 1 year after (from March 1, 2019, to March 31, 2021). The number of deceased patients whose care involved the 3 Wishes Program, their characteristics, and wishes were compared between prepandemic and pandemic periods.SettingSix adult ICUs of a two-hospital health system in Los Angeles.PatientsDeceased patients whose care involved the 3 Wishes Program.InterventionsThe 3 Wishes Program is a palliative care intervention in which individualized wishes are implemented for dying patients and their families.Measurements and main resultsDuring the study period, the end-of-life care for 523 patients involved the 3 Wishes Program; more patients received the 3 Wishes Program as part of their end-of-life care during the pandemic period than during the prepandemic study period (24.8 vs 17.6 patients/mo; p = 0.044). Patients who died during the pandemic compared with prepandemic were less likely to have family at the bedside and more likely to have postmortem wishes fulfilled for their families. Compared with the 736 wishes implemented during the prepandemic period, the 969 wishes completed during the pandemic were more likely to involve keepsakes. Wishes were most commonly implemented by bedside nurses, although the 3 Wishes Program project manager (not involved in the patient's clinical care) was more likely to assist remotely during the pandemic (24.8% vs 12.1%; p < 0.001).ConclusionsBedside innovations, programmatic adaptations, and institutional support made it possible for healthcare workers to continue the 3 Wishes Program and provide compassionate end-of-life care in the ICU during this pandemic.

Project description:BackgroundThe 3 Wishes Project (3WP) is an end-of-life program that honors the dignity of dying patients by fostering meaningful connections among patients, families, and clinicians. Since 2013, it has become embedded in the culture of end-of-life care in over 20 ICUs across North America. The purpose of the current study is to describe the variation in implementation of 3WP across sites, in order to ascertain which factors facilitated multicenter implementation, which factors remain consistent across sites, and which may be adapted to suit local needs.MethodsUsing the methodology of qualitative description, we collected interview and focus group data from 85 clinicians who participated in the successful initiation and sustainment of 3WP in 9 ICUs. We describe the transition between different models of 3WP implementation, from core clinical program to the incorporation of various research activities. We describe various sources of financial and in-kind resources accessed to support the program.ResultsBeyond sharing a common goal of improving end-of-life care, sites varied considerably in organizational context, staff complement, and resources. Despite these differences, the program was successfully implemented at each site and eventually evolved from a clinical or research intervention to a general approach to end-of-life care. Key to this success was flexibility and the empowerment of frontline staff to tailor the program to address identified needs with available resources. This adaptability was fueled by cross-pollination of ideas within and outside of each site, resulting in the establishment of a network of like-minded individuals with a shared purpose.ConclusionsThe successful initiation and sustainment of 3WP relied on local adaptations to suit organizational needs and resources. The semi-structured nature of the program facilitated these adaptations, encouraged creative and important ways of relating within local clinical cultures, and reinforced the main tenet of the program: meaningful human connection at the end of life. Local adaptations also encouraged a team approach to care, supplementing the typical patient-clinician dyad by explicitly empowering the healthcare team to collectively recognize and respond to the needs of dying patients, families, and each other.Trial registrationNCT04147169 , retrospectively registered with clinicaltrials.gov on October 31, 2019.

Project description:Research aimsThe motivations that lead to wishes to die (WTD) in palliative care patients with cancer are relatively well studied. But little is known about WTD in other pathologies and the relation between subjective understandings of dying trajectories and a WTD. We investigated the WTD of palliative patients in four different dying trajectories: neurological diseases, organ failure, frailty due to age, and cancer.Study population62 palliative cancer (n = 30) and non-cancer (n = 32) patients (10 neurological disease; 11 organ failure; 11 frailty), their families and health professionals in different palliative care settings (248 interviews).Study design and methodsQualitative semi-structured interviews. Data analysis through Interpretive Phenomenological Analysis and Grounded Theory.ResultsIn addition to personal motivations, we found that people dealing with similar trajectories were often confronted with similar questions and concerns due to similar challenges. For four trajectories we show typical patterns, similarities and differences that should be considered when talking with patients about their WTD. These illness-related considerations do not explain the WTD completely, but give important information on the challenges for particular patient groups that might experience a WTD. In all patient groups, there were clear moments that triggered a WTD: for neurological patients it was experiencing breathlessness, high-dependency care, or when considering tube feeding or respiratory support; for persons with organ failure it was an acute burdensome crisis; for patients with cancer after the initial diagnosis, it was the first relapse or the move into advanced palliative care; for elderly frail persons it was the move into care facilities, or the loss of important relationships or capabilities. The feeling of being a burden to others was reported in all patient groups.InterpretationWTD can be triggered within disease trajectories by specific conditions and transitional points that affect agency and self-understanding. A better understanding of the concerns and challenges of a particular dying trajectory as well as its characteristic trigger points can facilitate early and comprehensive communication about patients' WTD, and the underlying motivations and protective factors.

Dataset Information

Discussing end of life wishes - the impact of community interventions?

Background

Methods

Results

Conclusions

Publications

Discussing end of life wishes - the impact of community interventions?

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