Objective: Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults.
Method: Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test.
Results: There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05).
Significance of results: This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.
Objectives: To analyze the association of an incentivization program to promote death outside of hospitals with changes in place of death.
Design: A longitudinal observational study using national databases.
Setting and Participants: Participants comprised Japanese decedents (=65 years) who had used long-term care insurance services and died between April 2007 and March 2014.
Methods: Using a database of Japanese long-term care insurance service claims, subjects were divided into community-dwelling and residential aged care (RAC) facility groups. Based on national death records, change in place of death after the Japanese government initiated incentivization program was observed using logistic regression.
Results: Hospital deaths decreased by 8.7% over time, mainly due to an increase in RAC facility deaths. The incentivization program was more associated with decreased in-hospital deaths for older adults in RAC facilities than community-dwelling older adults.
Conclusions and Implications: In Japan, the proportion of in-hospital deaths of frail older adults decreased since the health services system introduced the incentivization program for end-of-life care outside of hospitals. The shift of place of death from hospitals to different locations was more prominent among residents of RAC facilities, where informal care from laymen was required less, than among community residents.
OBJECTIVE: This is a pilot study with a primary goal to develop an effective, targeted educational intervention that can serve as a teaching tool to educate African American (AA) population, especially the elderly, on options of end of life (EOL) prior to critical care.
METHOD: We first assessed the level of preparation for EOL in the AA community through a survey instrument. The survey was used to determine the deficits in knowledge in AA population in Mid-Michigan regarding EOL choices before and after the educational intervention. Paired-sample t-test was used to assess changes in understanding about EOL planning options. Regressions analysis was used to assess these changes while including several demographic covariates. P < 0.05 was considered statistically significant.
RESULTS: Our pilot data indicated that the educational intervention could be used as an effective teaching tool in educating AA population on EOL choices.
SIGNIFICANCE OF RESULTS: AA patients are more likely to choose life-sustaining measures at the end of their lives compared to other ethnic groups despite terminal illness. This decision is partly based on lack of knowledge of the available options of care at the EOL. Due to multiple life-sustaining measures, the AA patients are not receiving the care to help them peacefully die. This study provides evidence that physicians will need to increase their educational efforts with the AA population to help them better understand EOL options. An educational tool like the one developed in this study may be helpful and lessen the time of education so that the physician can answer any questions at the end of the session and also empower individuals and communities to take an active role in creating a culture of wellness at the EOL and decreasing morbidity.
Community engagement and -education are proposed to foster equity in access to care and to ensure dignity of migrant patients in the last phase of life, but evidence is lacking. We evaluated nine community educational interactive meetings about palliative care (136 participants totally)- co-created with educators from our target groups of Moroccan, Surinamese and Turkish migrants-with a mixed methods approach, including 114 questionnaires, nine observations, nine interviews with educators, and 18 pre- and post- group- and individual interviews with participants. Descriptive and thematic analysis was used. 88% of the participants experienced the meetings as good or excellent. Educators bridged an initial resistance toward talking about this sensitive topic with vivid real-life situations. The added value of the educational meetings were: (1) increased knowledge and awareness about palliative care and its services (2) increased comprehensiveness of participant's wishes and needs regarding dignity in the last phase; (3) sharing experiences for relief and becoming aware of real-life situations. Community engagement and -education about palliative care for migrants effectively increases knowledge about palliative care and is a first step towards improved access to palliative care services, capacity building and a dignified last phase of life among migrants.
Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.
In Western society, the topic of death has been removed from everyday life and replaced with medical language. Such censorship does not reduce individuals' fear of death, but rather limits their ability to elaborate their experiences of death, thus generating negative effects. The objective of this follow-up qualitative study was to detect how and if death education can help to improve individuals' relationship with death and enhance care environments like hospices. Semi-structured interviews were conducted with palliative care professionals and teachers who had taken part in a death education initiative three years earlier. The results confirmed the initiative's positive effect on both palliative care professionals and teachers. The participants reported that the education initiative helped them to positively modify their perspective on death, end-of-life care, and their own relationship to life, as well as their perception of community attitudes towards the hospice, which seemed to become less discriminatory. This study confirmed that school education initiatives can usefully create continuity between hospices and local communities. This project provided an educational space wherein it was possible for participants to elaborate their experiences in relation to death and to re-evaluate and appreciate hospices.
BACKGROUND: Conversations about death are often associated with fear, anxiety, avoidance and misunderstandings. Many adults feel that these discussions are inappropriate and confusing for young people. In this project, two fourth-year nursing students partnered with a local palliative care team to examine death education for children. The nursing students focused on children's understandings of death and their coping abilities, the lack of appropriate discussions about death with children, and the implementation of death education in public schools. Three online death education resources were identified and evaluated for use in public schools. This project fueled preliminary local discussions and advocacy efforts in the provision of death education for children. In the future, death education will need to be incorporated into education plans at local schools, and could be done in collaboration with the local palliative care team.
BACKGROUND: Caring for loved ones with palliative needs can be very stressful for carers'. To address this growing issue, an online Home Caregiver Support Program course was created to provide information to non-professional home caregivers about end-of-life care.
OBJECTIVES: To measure non-professional caregivers' perceived level of competence in addressing physical, psychological, social, and spiritual needs before and after completing online training modules.
METHODS: Learners rated their competence before and after completing online modules addressing 4 key dimensions relevant to palliative caregivers. Self-ratings of competence were assessed through surveys, completed before and after the online modules. Scores from before and after each module were compared to determine if the online course had increased participant competence. The Wilcoxon signed rank test was used to analyze participant responses to the pre- and post-survey questions.
RESULTS: A total of 176 participants who completed one or more of the online modules between July 2017-December 2018, 70 (40%) of the participants completed at least one pre- and post-module survey and did not declare themselves as a professional caregiver. Participating in the online Home Caregiver Support Program increased participants' ratings of perceived competence in all domains (p < .01). This significance was maintained when professional caregivers were added to our analysis.
CONCLUSION: After the completing the modules, participants' self-ratings of perceived competence increased suggesting that participants completing the online program had improved knowledge in addressing the physical, psychological, social, and spiritual challenges faced by non-professional caregivers.
Objectives: To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted.
Design: Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups.
Setting: Three NHs in South East England with dementia units, diverse in terms of size, ownership status, and location.
Participants: Residents with a dementia diagnosis or scoring =2 on the Noticeable Problems Checklist, rated as “severe” on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses).
Intervention: Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework.
Measurements: Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident’s agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers’ views on the intervention.
Results: The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended =3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful.
Conclusions: The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted.
Although patient satisfaction scores have been used in the inpatient setting for more than a decade, they are new to the hospice and home care setting. Hospice organizations began tracking Consumer Assessment of Healthcare Providers & Systems (CAHPS) scores in 2017, and beginning in 2019, the scores became accessible by the public. The purpose of this quality improvement project was to determine whether improved communication techniques had a positive effect on CAHPS scores at an outpatient nonprofit hospice organization. The intervention was divided into 2 parts, improving communication among staff and improving education provided to patients and their caregivers. This pilot project was implemented over a 4-month period, and the CAHPS scores were compared with those from the 4 months before preceding implementation.
PURPOSE: To investigate the effectiveness of a structured death education program for older adults with chronic illness and their family caregivers.
METHODS: This study adopted two-group, non-randomized quasi-experimental design. Patient-caregiver dyads in the intervention group (N=40 dyads) engaged in the death education program at the bedside once a week for five weeks, were compared with participants (N=40 dyads) in the control group received usual health education. The program consisted of five sessions based on the Interaction Model of Client Health Behavior. Death attitude, death competence, well-being, family function and satisfaction were measured at baseline (T0), immediately after the intervention (T1) and one month later (T2). Data collection was conducted from July 30, 2019 to December 30, 2019.
RESULTS: The intention-to-treat analysis of between groups at 1-month follow-up revealed that the intervention group had greater decreases in the fear of death (p=.002, p<.001) and death avoidance (p<.001, p<.001), had greater increases in the neutral acceptance (p=.032, p<.001) and death competence (p<.001, p<.001) in patients and caregivers, respectively. There were significant intergroup differences over time for patient well-being of 6.40 (3.06, 9.74) and satisfaction of 3.30 (2.01, 4.59), with both p<.001. Results were consistent with the results from the sensitivity analysis.
CONCLUSIONS: This study demonstrated the feasibility and benefits of death education in hospitals and provided an implementation plan for nursing professionals. Nurses should consider providing death education for older adults with chronic diseases and their families to promote the development of palliative care and the quality of end-of-life.
PURPOSE OF REVIEW: This review was undertaken to analyze the main reasons behind the limited development of hospice care in China, and to put forward some suggestions.
RECENT FINDINGS: Although the Chinese government has increased its support for hospice care in recent years, however, owing to the lack of education around hospice care and the heavy influence of the traditional Chinese Confucian concept of "filial piety," many individuals resist hospice care. Moreover, due to impaired patient rights, inadequate composition of hospice care teams, unbalanced geographical distribution, and limited service range, the development of hospice care in China is hindered. Hospice care education and continued training should be popularized and the government should strengthen the legal structure of the medical system to protect the rights of patients, families, and medical staff to promoting social support for hospice care. Through graded diagnosis and referral systems in medical institutions to integrate medical resources and expand the range of hospice care services.
BACKGROUND: Group visits can support health behavior change and self-efficacy. In primary care, an advance care planning (ACP) group visit may leverage group dynamics and peer mentorship to facilitate education and personal goal setting that result in ACP engagement.
OBJECTIVE: To determine whether the ENgaging in Advance Care Planning Talks (ENACT) group visits intervention improves ACP documentation and readiness in older adults.
METHODS: This randomized clinical trial was conducted among geriatric primary care patients from the University of Colorado Hospital Seniors Clinic, Aurora, CO, from August 2017 to November 2019. Participants randomized to ENACT group visits (n = 55) participated in two 2-hour sessions with discussions of ACP topics and use of ACP tools (i.e., Conversation Starter Kit, Medical Durable Power of Attorney form, and PREPARE videos). Participants randomized to the control arm (n = 55) received the Conversation Starter Kit and a Medical Durable Power of Attorney form by mail. The primary outcomes included presence of ACP documents or medical decision-maker documentation in the electronic health record (EHR) at 6 months, and a secondary outcome was ACP readiness (validated four-item ACP Engagement Survey) at 6 months.
RESULTS: Participants were a mean of 77 years old, 60% female, and 79% white. At 6 months, 71% of ENACT participants had an advance directive in the EHR (26% higher) compared with 45% of control arm participants (P < .001). Similarly, 93% of ENACT participants had decision-maker documentation in the EHR (29% higher) compared with 73% in the control arm (P < .001). ENACT participants trended toward higher readiness to engage in ACP compared with control (4.56 vs 4.13; P = .16) at 6 months.
CONCLUSION: An ACP group visit increased ACP documentation and readiness to engage in ACP behavior change. Primary care teams can explore implementation and adaptation of ACP group visits into routine care, as well as longer-term impact on patient health outcomes.
CONTEXT: Many advanced cancer patients have unrealistic prognostic expectations.
OBJECTIVES: We tested whether offering life expectancy (LE) statistics within palliative chemotherapy (PC) education promotes realistic expectations.
METHODS: In this multicenter trial, patients with advanced colorectal and pancreatic cancers initiating first or second line PC were randomized to usual care versus a PC educational tool with optional LE information. Surveys at 2 weeks and 3 months assessed patients' review of the LE module and their reactions; at 3 months, patients estimated their LE and reported occurrence of prognosis and end-of-life (EOL) discussions. Wilcoxon tests and proportional odds models evaluated between-arm differences in LE self-estimates, and how realistic those estimates were (based on cancer type and line of treatment).
RESULTS: From 2015-2017, 92 patients were randomized to the intervention and 94 to usual care. At baseline most patients (80.9%) wanted "a lot" or "as much information as possible" about the impact of chemotherapy on LE. Among patients randomized to the intervention, 52.0% reviewed the LE module by 2 weeks and 66.7% by 3 months - of whom 88.2% reported the information was important, 31.4% reported it was upsetting, and 3.9% regretted reviewing it. Overall, patients' LE self-estimates were very optimistic; 71.4% of colorectal cancer patients estimated >5yrs; 50% pancreatic patients estimated >2yrs. The intervention had no effect on the length or realism of patients' LE self-estimates, or on the occurrence of prognostic or EOL discussions.
CONCLUSIONS: Offering LE information within a PC educational intervention had no effect on patients' prognostic expectations.
OBJECTIVE: This pilot study set out to evaluate the feasibility and efficacy of an interactive, peer-led, health engagement workshop to improve confidence and comprehension related to advance care planning (ACP) among young adults. Secondarily, this study evaluated if such workshops could promote ACP related behavior changes within this population.
METHODS: This observational cohort study utilized a repeated measures, mixed-method design. Six hour-long, in-person workshops were conducted with undergraduate students during meetings of university student organizations. Participants were evaluated across 3 mixed-method surveys, evaluating confidence, knowledge, and behaviors related to ACP prior to participation, directly after, and during a 2-week follow-up.
RESULTS: Workshop participation improved the average participant confidence and knowledge related to ACP as well as encouraged some participants to engage in discussions related to end-of-life care with friends and family. Alongside the impact of the workshops on knowledge and confidence, participants positively evaluated the design of the workshops through collected qualitative feedback.
CONCLUSION: These results are encouraging in assessing this population's willingness to learn about end-of-life care planning. The tools developed and the corresponding results should be used for further exploration of engaging the young adult population in ACP to promote improved healthcare outcomes.
INTRODUCTION: The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe.
METHODS: This online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology.
RESULTS: 298 people completed the survey-178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues.
DISCUSSION: The study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.
BACKGROUND: While many Aotearoa/New Zealanders are receiving excellent palliative care the Pacific populations have limited access to available hospice and palliative care services. Little research has been conducted to identify barriers unique to Pacific populations accessing these services. The purpose of this study was to explore key stakeholders' perspectives on the determinants of low access among Pacific populations to these services.
METHODS: Forty-five semi-structured interviews were conducted face-to-face with hospice patients and their families, hospice/health providers and key informants from the Auckland and Wellington region of Aotearoa/New Zealand. The interviews were recorded and transcribed verbatim and a thematic analysis was carried out by identifying, coding and categorising patterns in the data. Identified themes were then discussed further to determine the relevance of the data grouped by theme.
RESULTS: Five interrelated themes affecting access emerged: perception of hospice (often negative) through lack of accurate information, but changing; families' role to look after their own and sick elderly; hospice experiences; continuity of care in the community and the need for information and communication.
CONCLUSION: Hospice and associated palliative care services are under-utilised and commonly misunderstood among Pacific populations in Aotearoa/New Zealand. There is active support following appropriate information received, hence the need for community education and culturally appropriate hospice and palliative services. Inadequate inter-professional communication contributes to polypharmacy and inefficiency in continuity of care across all levels. The Pacific individual is one component of a collective that is critical in major decisions in end-of-life and life changing situations. The findings may guide policies and further research to improve Hospice and Palliative services in Aotearoa/New Zealand.
Background: Patients with advanced cancer and their caregivers have substantial misperceptions regarding hospice, which contributes to its underuse.
Methods: The authors conducted a single-site randomized trial of a video educational tool versus a verbal description of hospice in 150 hospitalized patients with advanced cancer and their caregivers. Patients without a caregiver were eligible. Intervention participants (75 patients and 18 caregivers) viewed a 6-minute video depicting hospice. Control participants (75 patients and 26 caregivers) received a verbal description identical to the video narrative. The primary outcome was patient preference for hospice. Secondary outcomes included patient and/or caregiver knowledge and perceptions of hospice, and hospice use.
Results: Between February 2017 and January 2019, approximately 55.7% of eligible patients (150 of 269 eligible patients) and 44 caregivers were enrolled. After the intervention, there was no difference noted with regard to patients' preferences for hospice (86.7% vs 82.7%; P = .651). Patients in the video group reported greater knowledge regarding hospice (9.0 vs 8.4; P = .049) and were less likely to endorse that hospice is only about death (6.7% vs 21.6%; P = .010). Among deceased patients, those assigned to the intervention were more likely to have used hospice (85.2% vs 63.6%; P = .01) and to have had a longer hospice length of stay (median, 12 days vs 3 days; P < .001). After the intervention, caregivers assigned to view the video were more likely to prefer hospice for their loved ones (94.4% vs 65.4%; P = .031), reported greater knowledge concerning hospice (9.7% vs 8.0%; P = .001), and were less likely to endorse that hospice is only about death (0.0% vs 23.1%; P = .066).
Conclusions: A hospice video did not significantly impact patients' preferences for hospice care. Patients with advanced cancer and their caregivers who were assigned to view the video were more informed regarding hospice and reported more favorable perceptions of hospice. Patients were more likely to use hospice and to have a longer hospice length of stay.
Background: Communities have limited understanding of palliative care, creating barriers to informed choice around consideration of a full range of care options in the event of serious illness. Few empirically tested interventions are available to educate community about palliative care, and ultimately improve timely access to these services.
Aim: To test the acceptability (primary outcome), and feasibility of a narrative approach to public health communication seeking to improve attitudes to possible access to palliative care in the event of serious illness.
Design: Randomised phase II trial with six parallel experimental conditions. Outcomes tested included measures of acceptability, feasibility and change in attitudes to possible access to palliative care post-intervention. Contrasts planned for exploratory testing included format, message content and narrator.
Setting/participants: Community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups.
Results: A narrative approach to public health communication was found to be acceptable to community members, and feasible to deliver online. Exploratory data suggested it immediately improved attitudes towards possible access to palliative care in the event of serious illness, with the narrative detailing a description of the evidence delivered by a healthcare professional appearing to be the most promising strategy.
Conclusions: This study provides preliminary data to inform a future, longitudinal trial evaluating effectiveness and ultimately other evidence-based, public health approaches to improve community engagement with palliative care. Further studies are required to confirm the generalisability of findings to a broader representative sample and other settings including internationally.
Given the need for organs, public organizations use social marketing strategies to increase the number of donors. Their campaigns employ a variety of moral appeals. However, their effects on audiences are unclear. We identified 14 campaigns in Germany from over the last 20 years. Our approach combined a multimodal analysis of categorized posters with a qualitative analysis of responses, collected in interviews or focus groups, of 53 persons who were either skeptical or undecided about organ donation. The combined analyses revealed that the posters failed to motivate laypersons in general to donate, and were even less effective on skeptical or undecided individuals. We explain this in terms of the types of moral messages found on posters and the limits of such social marketing strategies. Furthermore, we discuss certain ethical aspects of organ donation campaigns pertaining to communicating norms and trust in public institutions.