Accessibility of information on patients' and family members' end-of-life wishes in advance care planning.
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ABSTRACT: Aim
To describe healthcare professionals' accessibility and transfer of patients' and family members' end-of-life wishes in ACP to the palliative care unit.Design
The study used a qualitative descriptive study design.Methods
Purposive sampling was used. The data (N = 33) were collected through interviews with physicians, registered nurses, practical nurses and social workers. The data were analysed by inductive content analysis.Results
Two main categories emerged. Patients' and family members' end-of-life wishes documentation in relation to changing information needs was described in relation to patients' condition and care context. Transfer of patients' and family members' end-of-life wishes to palliative care unit included written and verbal communication. Results showed lack of implementation of ACP early, lack of implementation about the holistic interpretation of ACP into medical notes and lack of transferability of ACP into documenting systems impacting on accessibility and realization for the patient and family members at the end-of-life.
SUBMITTER: Kuusisto A
PROVIDER: S-EPMC8685785 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description: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.
| S-EPMC7556500 | biostudies-literature
Project description:BackgroundResources for healthcare professionals, patients and those important to them relating to planning and coordinating treatment and care at the end of life are abundant, and can be difficult to navigate. However, they have not been systematically collated or catalogued in terms of their purpose, scope or intended audience.AimTo collate, categorise and characterise advance care planning and end-of-life treatment and care (EoLT + C) resources directed towards healthcare professionals, patients and their families.MethodsRapid review and thematic synthesis of resources available in the United Kingdom. Google searches and reviews of websites belonging to selected organisations that develop and publish materials relating to EoLT + C, and advance care planning were used. Materials were included if they were intended for those over 18 living in the UK and pertained to five domains of EoLT + C: identifying those approaching end of life; accessing EoLT + C services; conducting important conversations about EoLT + C and preferences; advance care planning, including recording of preferences and plans; and ensuring that plans and preferences are accessed and used by health and social care services.Results246 resources directed at healthcare professionals, patients and their families were identified, collated, catalogued and made internationally available for clinicians, researchers, patients and the public. 61 were classified as interactive, providing decision support in EoLT + C that went beyond simply providing information. Of these, there was notable content overlap among tools for identifying patients in their last year of life. There was variation in the development of tools across all domains of end-of-life care by geography and patient group. Few interactive resources integrated seamlessly with a digital interface or healthcare provider workflows. Incentives for the adoption of best-practice appeared rare.ConclusionsWe present a repeatable and scalable approach to the cataloguing and characterisation of palliative care resources. The identified resources will be of benefit not only to those in the UK but to those in other countries, developing or evaluating their own resources for aiding professionals and patients to plan and deliver excellent treatment and care at the end of life.
| S-EPMC9706845 | biostudies-literature
Project description:AimsEarly engagement in advance care planning (ACP) is recommended in heart failure (HF) management. We investigated the preferences of patients with HF regarding ACP and end-of-life (EOL) care, including their desired timing of ACP initiation.Methods and resultsData were collected using a 92-item questionnaire survey, which was directly distributed to hospitalized patients by dedicated physicians and nurses in a university hospital setting. One-hundred eighty-seven patients agreed to participate (response rate: 92.6%), and 171 completed the survey [valid response rate: 84.7%; men: 67.3%; median age: 73.0 (63.0-81.0) years]. Logistic regression analyses were conducted to identify the predictors of positive attitudes towards ACP. Most recognized ACP as important for their care (n = 127, 74.3%), 48.1% stated that ACP should be initiated after repeated HF hospitalizations in the past year, and 29.0% preferred ACP to begin during the first or second HF hospitalization. Only 21.7% of patients had previously engaged in ACP conversations during HF management. Positive attitudes towards ACP were associated with lower depressive symptoms [two-item Patient Health Questionnaire; odds ratio (OR): 0.75, 95% confidence interval (CI): 0.61-0.92, P-value: 0.006], marriage (OR: 2.53, 95% CI: 1.25-5.12, P-value: 0.010), and a high educational level (OR: 2.66, 95% CI: 1.28-5.56, P-value: 0.009), but not with severity of HF (represented by Seattle Heart Failure Model risk score). Regarding EOL care, while 'Saying what one wants to tell loved ones' (83.4%), 'Dying a natural death' (81.8%), and 'Being able to stay at one's favorite place' (75.6%) were the three most important factors for patients, preferences for 'Receiving sufficient treatment' (56.5%) and 'Knowing what to expect about future condition' (50.3%) were divergent.ConclusionsDespite patients' preferences for ACP conversations, there was a discrepancy between preference and engagement in ACP among patients hospitalized for HF. Patients' preferences regarding EOL care may differ; physicians need to consider the appropriate ACP approach to align with patients' care goals.
| S-EPMC8712895 | biostudies-literature
Project description:Background/objectiveThe Centers for Medicare & Medicaid Services (CMS) reimburses clinicians for advance care planning (ACP) discussions with Medicare patients. The objective of the study was to examine the association of CMS-billed ACP visits with end-of-life (EOL) healthcare utilization.DesignPatient-level analyses of claims for the random 20% Medicare fee-for-service (FFS) sample of decedents in 2017. To account for multiple comparisons, Bonferroni adjusted P value <.008 was considered statistically significant.SettingNationally representative sample of Medicare FFS beneficiaries.ParticipantsA total of 237,989 Medicare FFS beneficiaries who died in 2017 and included those with and without a billed ACP visit during 2016-17.InterventionThe key exposure variable was receipt of first billed ACP (none, >1 month before death).MeasurementsSix measures of EOL healthcare utilization or intensity (inpatient admission, emergency department [ED] visit, intensive care unit [ICU] stay, and expenditures within 30 days of death, in-hospital death, and first hospice within 3 days of death). Analyses was adjusted for age, race, sex, Charlson Comorbidity Index, expenditure by Dartmouth hospital referral region (high, medium, or low), and dual eligibility.ResultsOverall, 6.3% (14,986) of the sample had at least one billed ACP visit. After multivariable adjustment, patients with an ACP visit experienced significantly less intensive EOL care on four of six measures: hospitalization (odds ratio [OR] = .77; 95% confidence interval [CI] = .74-.79), ED visit (OR = .77; 95% CI = .75-.80), or ICU stay (OR = .78; 95% CI = .74-.81) within a month of death; and they were less likely to die in the hospital (OR = .79; 95% CI = .76-.82). There were no differences in the rate of late hospice enrollment (OR = .97; 95% CI = .92-1.01; P = .119) or mean expenditures ($242.50; 95% CI = -$103.63 to $588.61; P = .169).ConclusionBilled ACP visits were relatively uncommon among Medicare FFS decedents, but their occurrence was associated with less intensive EOL utilization. Further research on the variables affecting hospice use and expenditures in the EOL period is recommended to understand the relative role of ACP.
| S-EPMC8559724 | 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:BackgroundTo increase knowledge about options people have concerning end-of-life-care issues, General Practitioners (GPs) can organise meetings to inform their older patients. We evaluated these meetings, using the following research questions: How did the attendees experience the information meeting? Was there a rise in Advance Care Planning (ACP) behaviour after the information meeting? Was there a change in trust people have that physicians will provide good care at the end of life and that they will follow their end-of-life wishes after the information meetings?MethodsFour GPs invited all patients of 75 years and older registered in their GP practices to the meeting via a written letter. Four meetings of 2 h took place in 2016. Meetings started with a presentation on end-of-life topics and ACP by the GP followed by time for questions. A pre-post evaluation study was done using written questionnaires distributed and filled in at the start of the meeting (T0) at the end of the meeting (T1) and 6 months after the meeting (T2).ResultsIn total 225 older people attended a meeting of which 154 (68%) filled in the questionnaire at T0 and 145 (64%) filled in the questionnaire at T1. After six months, 90 of the 121 people who approved of being sent another questionnaire at T2, returned it (40%). The average age of the respondents was 80 years (T0). The meetings were evaluated positively by the attendees (T1). ACP issues (appointing a proxy, resuscitation, hospitalisation, euthanasia, treatment preferences under certain circumstances, preferred place of care and nursing home admittance) were discussed with a physician, a relative or both more often in the 6 months after having attended the meeting (T2), compared to before (T0). Compared to before the meeting (T0), trust in the GP providing good end-of-life care and following end-of-life wishes was higher immediately after the meeting (T1), but not after 6 months (T2).ConclusionInformation meetings on end-of-life care by GPs have a positive influence on the occurrence of ACP, both with the physician and others. Although, this method especially reaches the older people that are already interested in the subject, this seems a relatively easy way to stimulate ACP.
| S-EPMC8183039 | biostudies-literature
Project description:Importance:Although advance care planning is known to increase patient and caregiver satisfaction, its association with health care utilization is not well understood. Objective:To examine the association between billed advance care planning encounters and subsequent health care utilization among seriously ill patients. Design, Setting, and Participants:This retrospective cohort study conducted from October 1, 2015, to May 31, 2018, used a national commercial insurance claims database to retrieve data from 18 484 Medicare Advantage members 65 years or older who had a claim that contained a serious illness diagnosis. Exposure:A claim that contained an advance care planning billing code between October 1, 2016, and November 30, 2017. Main Outcomes and Measures:Receipt of intensive therapies, hospitalization, emergency department use, hospice use, costs, and death during the 6-month follow-up period. Results:The final study sample included 18 484 seriously ill patients (mean [SD] age, 79.7 [7.9] years; 10 033 [54.3%] female), 864 (4.7%) of whom had a billed advanced care planning encounter between October 1, 2016, and November 30, 2017. In analyses adjusted for patient characteristics and a propensity score for advance care planning, the presence of a billed advance care planning encounter was associated with a higher likelihood of hospice enrollment (incidence rate ratio [IRR], 2.52; 95% CI, 2.22-2.86) and mortality (hazard ratio, 2.27; 95% CI, 1.79-2.88) compared with no billed advance care planning encounter. Although patients with billed advance care planning encounters were also more likely to be hospitalized (IRR, 1.37; 95% CI, 1.26-1.49), including in the intensive care unit (IRR, 1.25; 95% CI, 1.08-1.45), they were less likely to receive any intensive therapies (IRR, 0.85; 95% CI, 0.78-0.92), such as chemotherapy (IRR, 0.65; 95% CI, 0.55-0.78). Similar results were observed in a propensity score-matched analysis (99% matched) and in a decedent analysis of patients who died during the 6-month follow-up period. Conclusions and Relevance:Patients with billed advance care planning encounters were more likely than those without these encounters to receive hospice services and less likely to receive any intensive therapies, such as chemotherapy. However, they were also hospitalized more frequently than patients without billed advance care planning encounters. Although these findings were robust to multiple analytic methods, the results may be attributable to residual confounding because of a higher unmeasured severity of illness in the advance care planning group. Additional evidence appears to be needed to understand the effect of advance care planning on these outcomes.
| S-EPMC6827391 | biostudies-literature
Project description:ObjectiveTo investigate the impact of advance care planning on end of life care in elderly patients.DesignProspective randomised controlled trial.SettingSingle centre study in a university hospital in Melbourne, Australia.Participants309 legally competent medical inpatients aged 80 or more and followed for six months or until death.InterventionsParticipants were randomised to receive usual care or usual care plus facilitated advance care planning. Advance care planning aimed to assist patients to reflect on their goals, values, and beliefs; to consider future medical treatment preferences; to appoint a surrogate; and to document their wishes.Main outcome measuresThe primary outcome was whether a patient's end of life wishes were known and respected. Other outcomes included patient and family satisfaction with hospital stay and levels of stress, anxiety, and depression in relatives of patients who died.Results154 of the 309 patients were randomised to advance care planning, 125 (81%) received advance care planning, and 108 (84%) expressed wishes or appointed a surrogate, or both. Of the 56 patients who died by six months, end of life wishes were much more likely to be known and followed in the intervention group (25/29, 86%) compared with the control group (8/27, 30%; P<0.001). In the intervention group, family members of patients who died had significantly less stress (intervention 5, control 15; P<0.001), anxiety (intervention 0, control 3; P=0.02), and depression (intervention 0, control 5; P=0.002) than those of the control patients. Patient and family satisfaction was higher in the intervention group.ConclusionsAdvance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives. Trial registration Australian New Zealand clinical trials registry ACTRN12608000539336.
| S-EPMC2844949 | biostudies-literature
Project description:Advanced care planning (ACP) includes advance directives (AD), which can specify provisions for palliative care and types of life-sustaining treatments for an individual requiring end-of-life (EoL) care. ACP for persons in the early stages of cognitive decline can decrease anxiety and conflict for family members needing to make decisions about EoL-care, which is especially critical for family caregivers (FCGs) if they play a role as a surrogate regarding healthcare decisions. However, ACP for persons with cognitive impairment (PWCIs) is often overlooked. This study explored the effects of a family-centered ACP intervention on decisions about EoL-care, life-sustaining treatment decisions, and discussions of related topics among PWCIs and FCGs. The study was conducted in outpatient clinics of regional teaching hospitals in northern Taiwan. Participants were dyads consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. The family-centered ACP intervention was provided by an ACP-trained senior registered nurse. A one-group, pretest-posttest design was used to evaluate the effect of the intervention on 44 dyads. Four structured questionnaires collected data regarding familiarity with ACP, intention to engage in ACP, participation in personal discussions between the dyads about ACP, and consistency between PWCIs and FCGs for decisions about life-sustaining treatments at EoL. Paired t, Kappa, and McNemar tests were used to compare differences between pre-intervention data (pretest) and post-intervention data (posttest). There were significant increases in familiarity with ACP, components of ACP, and the number of topics PWCIs and FCGs personally discussed surrounding EoL-care decisions. There was no change for either group in wanting to have a formal ACP consultation and only modest increases in consistency between PWCIs and FCGs for life-sustaining treatment decisions after completion of the family-centered ACP intervention. Clinicians caring for PWCIs should incorporate family-centered ACP interventions and support ongoing discussions about life-sustaining medical treatments to ensure their preferences regarding EoL-care are respected. The accessibility and availability of consultations about ACP should also be provided.
| S-EPMC9447906 | biostudies-literature
Project description:ContextPersons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care.ObjectivesTo summarize and evaluate existing palliative and end-of-life care interventions that aim to improve outcomes for racial and ethnic underrepresented populations in the United States.MethodsWe conducted a systematic review of the literature in the English language from four databases through January 2020. Peer-reviewed studies that implemented interventions on palliative care, advance care planning, or end-of-life care were considered eligible. Data were extracted from 16 articles using pre-specified inclusion and exclusion criteria. Quality was appraised using the modified Downs and Black tool for assessing risk of bias in quantitative studies.ResultsFive studies were randomized controlled trials, and the remainder were quasi-experiments. Six studies targeted Latino/Hispanic Americans, five African Americans, and five, Asian or Pacific Islander Americans. The two randomized control trials reviewed and rated "very high" quality, found educational interventions to have significant positive effects on advance care planning and advance directive completion and engagement for underrepresented racial or ethnic groups.ConclusionThe effectiveness of advance care planning, end-of-life, and palliative care interventions in improving outcomes for underrepresented racial and ethnic populations remains uncertain. Randomized controlled trials and educational interventions indicate that interventions targeting underrepresented groups can have significant and positive effects on advance directives and/or advance care planning-related outcomes. More high-quality intervention studies that address racial and ethnic health disparities in palliative care are needed, particularly those that address systemic racism and other complex multilevel factors that influence disparities in health.
| S-EPMC8419069 | biostudies-literature