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Cancer Mar 2022Clinicians often cite a fear of giving up hope as a reason they defer advance care planning (ACP) among patients with advanced cancer. The objective of this study was to... (Randomized Controlled Trial)
Randomized Controlled Trial
BACKGROUND
Clinicians often cite a fear of giving up hope as a reason they defer advance care planning (ACP) among patients with advanced cancer. The objective of this study was to determine whether engagement in ACP affects hope in these patients.
METHODS
This was a secondary analysis of a randomized controlled trial of primary palliative care in advanced cancer. Patients who had not completed ACP at baseline were included in the analysis. ACP was assessed in the forms of an end-of-life (EOL) conversation with one's oncologist and completion of a living will or advance directive (AD). Measurements were obtained at baseline and at 3 months. Hope was measured using the Herth Hope Index (HHI) (range, 12-48; higher scores indicate higher hope). Multivariate regression was performed to assess associations between ACP and hope, controlling for baseline HHI score, study randomization, patient age, religious importance, education, marital status, socioeconomic status, time since cancer diagnosis, pain/symptom burden (Edmonton Symptom Assessment System), and anxiety/depression score (Hospital Anxiety and Depression Scale)-all variables known to be associated with ACP and/or hope.
RESULTS
In total, 672 patients with advanced cancer were enrolled in the overall study. The mean age was 69 ± 10 years, and the most common cancer types were lung cancer (36%), gastrointestinal cancer (20%) and breast/gynecologic cancers (16%). In this group, 378 patients (56%) had not had an EOL conversation at baseline, of whom 111 of 378 (29%) reported having an EOL conversation by 3 months. Hope was not different between patients who did or did not have an EOL conversation over the study period (mean ± standard deviation ∆HHI, 0.20 ± 5.32 vs -0.53 ± 3.80, respectively; P = .136). After multivariable adjustment, hope was significantly increased in patients who had engaged in an EOL conversation (adjusted mean difference in ∆HHI, 0.95; 95% CI, 0.08-1.82; P = .032). Similarly, of 216 patients (32%) without an AD at baseline, 67 (31%) had subsequently completed an AD. Unadjusted hope was not different between those who did and did not complete an AD (∆HHI, 0.20 ± 3.89 vs -0.91 ± 4.50, respectively; P = .085). After adjustment, hope was significantly higher in those who completed an AD (adjusted mean difference in ∆HHI, 1.31; 95% CI, 0.13-2.49; P = .030).
CONCLUSIONS
The current results demonstrate that hope is not decreased after engagement in ACP and indeed may be increased. These findings may provide reassurance to clinicians who are apprehensive about having these important and difficult conversations.
LAY SUMMARY
Many oncologists defer advance care planning (ACP) out of concern for giving up hope. This study demonstrates that hope is not decreased in patients who have engaged in ACP either as a conversation with their oncologists or by completing an advance directive. With this information, providers may feel more comfortable having these important conversations with their patients.
Topics: Advance Care Planning; Advance Directives; Aged; Breast Neoplasms; Communication; Female; Humans; Middle Aged; Palliative Care
PubMed: 34787930
DOI: 10.1002/cncr.34034 -
Einstein (Sao Paulo, Brazil) 2020The objective of this study was to identify the variables that influence physicians to implement Advance Directives and assess their impact on end-of-life care. It is a... (Review)
Review
The objective of this study was to identify the variables that influence physicians to implement Advance Directives and assess their impact on end-of-life care. It is a narrative literature review of 25 articles published between 1997 and 2018, in the following databases: CAPES, EBSCOhost, BDTD, VHL, Google Scholar, MEDLINE®/PubMed. The keywords utilized were: "advance directives", "living wills", "physicians", "attitude", "decision making", "advance care planning". The main factors that influenced physicians to implemente the directives were patients prognosis, medical paternalism, and patients understanding of their medical condition. Respect for autonomy, lack of knowledge and experience with directives, legal concerns, family influence, cultural and religious factors also contributed to medical decision. Most studies (86%) showed that having a directive led to lower rates of invasive interventions in the last days of patient´s life. Physicians were interested in respecting their patients' autonomy and agreed that having an advance directive helped in the decision-making process; however, they stated other factors were also taken into account, mainly prognosis and reversibility conditions. Having directives contributed to reducing the use of life support therapies and adoption of comfort measures.
Topics: Advance Directive Adherence; Advance Directives; Attitude of Health Personnel; Decision Making; Humans; Paternalism; Personal Autonomy; Physicians; Terminal Care
PubMed: 31618287
DOI: 10.31744/einstein_journal/2020RW4852 -
Journal of the American Geriatrics... Jan 2021Advance care planning (ACP) has shown benefit in some, but not all, studies. It is important to understand the utility of ACP. We conducted a scoping review to identify... (Review)
Review
BACKGROUND/OBJECTIVES
Advance care planning (ACP) has shown benefit in some, but not all, studies. It is important to understand the utility of ACP. We conducted a scoping review to identify promising interventions and outcomes.
DESIGN
Scoping review.
MEASUREMENTS
We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for ACP randomized controlled trials from January 1, 2010, to March 3, 2020. We used standardized Preferred Reporting Items for Systematic Review and Meta-Analyses methods to chart study characteristics, including a standardized ACP Outcome Framework: Process (e.g., readiness), Action (e.g., communication), Quality of Care (e.g., satisfaction), Health Status (e.g., anxiety), and Healthcare Utilization. Differences between arms of P < .05 were deemed positive.
RESULTS
Of 1,464 articles, 69 met eligibility; 94% were rated high quality. There were variable definitions, age criteria (≥18 to ≥80 years), diseases (e.g., dementia and cancer), and settings (e.g., outpatient and inpatient). Interventions included facilitated discussions (42%), video only (20%), interactive, multimedia (17%), written only (12%), and clinician training (9%). For written only, 75% of primary outcomes were positive, as were 69% for multimedia programs; 67% for facilitated discussions, 59% for video only, and 57% for clinician training. Overall, 72% of Process and 86% of Action outcomes were positive. For Quality of Care, 88% of outcomes were positive for patient-surrogate/clinician congruence, 100% for patients/surrogate/clinician satisfaction with communication, and 75% for surrogate satisfaction with patients' care, but not for goal concordance. For Health Status outcomes, 100% were positive for reducing surrogate/clinician distress, but not for patient quality of life. Healthcare Utilization data were mixed.
CONCLUSION
ACP is complex, and trial characteristics were heterogeneous. Outcomes for all ACP interventions were predominantly positive, as were Process and Action outcomes. Although some Quality of Care and Health Status outcomes were mixed, increased patient/surrogate satisfaction with communication and care and decreased surrogate/clinician distress were positive. Further research is needed to appropriately tailor interventions and outcomes for local contexts, set appropriate expectations of ACP outcomes, and standardize across studies.
Topics: Advance Directives; Communication; Humans; Physician-Patient Relations; Quality of Health Care; Randomized Controlled Trials as Topic
PubMed: 32894787
DOI: 10.1111/jgs.16801 -
South African Medical Journal =... Sep 2023Problems arise when a lawfully appointed surrogate decision-maker wishes to decide on a course of action on behalf of a mentally incompetent patient that is against the...
Problems arise when a lawfully appointed surrogate decision-maker wishes to decide on a course of action on behalf of a mentally incompetent patient that is against the patient's best interests. This may arise: (i) where there is no advance directive, and the decision is made by the surrogate decision-maker on religious grounds; (ii) where the medical practitioners are of the opinion that the surrogate decision-maker's decision is not in the best interests of the patient; (iii) where the close relatives of the patient do not agree with the decision by the surrogate decision-maker; and (iv) where the surrogate decision-maker asks the medical practitioners to undertake treatment or a procedure on the patient that is unlawful or unethical. Suggestions are made regarding what doctors should do when faced with each of these situations.
Topics: Humans; Decision Making; South Africa; Advance Directives; Physicians
PubMed: 37882133
DOI: 10.7196/SAMJ.2023.v113i9.707 -
Applied Clinical Informatics 2014Suboptimal care at the end-of-life can be due to lack of access or knowledge of patient wishes. Ambiguity is often the result of non-standardized formats. Borrowing...
Suboptimal care at the end-of-life can be due to lack of access or knowledge of patient wishes. Ambiguity is often the result of non-standardized formats. Borrowing digital technology from other industries and using existing health information infrastructure can greatly improve the completion, storage, and distribution of advance directives. We believe several simple, low-cost adaptations to regional and federal programs can raise the standard of end-of-life care.
Topics: Advance Care Planning; Advance Directives; Death; Decision Making; Humans; Taxes
PubMed: 25024771
DOI: 10.4338/ACI-2013-12-IE-0099 -
Swiss Medical Weekly 2018This article describes the Swiss law on advance directives that was passed at the beginning of 2013 and led to more certainty about the legally binding character of such... (Review)
Review
This article describes the Swiss law on advance directives that was passed at the beginning of 2013 and led to more certainty about the legally binding character of such directives. However, for various reasons the drafting of advance directives is not yet widespread in Switzerland, and many resources might be put to better use if this became a common practice. A recent proposal by members of a political party to make the discussion, although not the actual drafting, of advance directives mandatory was rejected by the Swiss Federal Parliament, and the proposal was written off after having been pending for 2 years. We consider that the rejection of this proposal was not justified and that discussion of advance directives should become mandatory, so that individuals can fully assume their role as responsible citizens taking proactive decisions. The decision not to draft advance directives should be a deliberate one, marking a shift from the current "opt-in" approach to an "opt-out" scenario.
Topics: Advance Directives; Choice Behavior; Decision Making; Humans; Switzerland
PubMed: 29767827
DOI: 10.4414/smw.2018.14628 -
Journal of Pain and Symptom Management Jun 2019Volunteer involvement may support organizations to initiate and operationalize complex interventions such as advance care planning (ACP). (Review)
Review
CONTEXT
Volunteer involvement may support organizations to initiate and operationalize complex interventions such as advance care planning (ACP).
OBJECTIVES
A scoping review was conducted to map existing research on volunteer involvement in ACP and to identify gaps in current knowledge base.
METHODS
We followed the PRISMA extension for Scoping Reviews (PRISMA-ScR) guidelines. The review included studies of any design reporting original research. ACP was defined as any intervention aimed at supporting people to consider and communicate their current and future health treatment goals in the context of their own preferences and values. Studies were included if they reported data relating to volunteers at any stage in the delivery of ACP.
RESULTS
Of 11 studies identified, nine different ACP models (initiatives to improve uptake of ACP) were described. Most of the models involved volunteers facilitating ACP conversations or advance care directive completion (n = 6); and three focused on ACP education, training, and support. However, a framework for volunteer involvement in ACP was not described; the studies often provided limited detail of the scope of volunteers' roles in ACP, and in three of the models, volunteers delivered ACP initiatives in addition to undertaking other tasks, in their primary role as a volunteer navigator. Increased frequency of ACP conversation or documentation was most commonly used to evaluate the effectiveness of the studies, with most showing a trend toward improvement.
CONCLUSIONS
Current literature on volunteer involvement in ACP is lacking a systematic approach to implementation. We suggest future research should focus on person-centered outcomes related to ACP to evaluate the effectiveness of volunteer involvement.
Topics: Advance Care Planning; Advance Directives; Hospital Volunteers; Humans
PubMed: 30853554
DOI: 10.1016/j.jpainsymman.2019.02.031 -
JAMA Internal Medicine Jul 2014Policies and practices that promote advance care planning and advance directive completion implicitly assume that patients' choices for end-of-life (EOL) care are stable... (Review)
Review
IMPORTANCE
Policies and practices that promote advance care planning and advance directive completion implicitly assume that patients' choices for end-of-life (EOL) care are stable over time, even with changes in health status.
OBJECTIVE
To systematically evaluate the evidence on the stability of EOL preferences over time and with changes in health status.
EVIDENCE REVIEW
We searched for longitudinal studies of patients' preferences for EOL care in PubMed, EMBASE, and using citation review. Studies restricted to preferences regarding the place of care at the EOL were excluded.
FINDINGS
A total of 296 articles were assessed for eligibility, and 59 met inclusion criteria. Twenty-four articles had sufficient data to extract or calculate the percentage of individuals with stable preferences or the percentage of total preferences that were stable over time. In 17 studies (71%) more than 70% of patients' preferences for EOL care were stable over time. Preference stability was generally greater among inpatients and seriously ill outpatients than among older adults without serious illnesses (P < .002). Patients with higher education and who had engaged in advance care planning had greater preference stability, and preferences to forgo therapies were generally more stable than preferences to receive therapies. Among 9 of the 24 studies (38%) assessing changes in health status, no consistent relationship with preference changes was identified.
CONCLUSIONS AND RELEVANCE
Considerable variability among studies in the methods of preference assessment, the time between assessments, and the definitions of stability preclude meta-analytic estimates of the stability of patients' preferences and the factors influencing these preferences. Although more seriously ill patients and those who engage in advance care planning most commonly have stable preferences for future treatments, further research in real-world settings is needed to confirm the utility of advance care plans for future decision making.
Topics: Advance Directives; Humans; Patient Preference; Terminal Care
PubMed: 24861560
DOI: 10.1001/jamainternmed.2014.1183 -
BMC Palliative Care Apr 2022Advance Care Planning including living wills and durable powers of attorney for healthcare is a highly relevant topic aiming to increase patient autonomy and reduce...
BACKGROUND
Advance Care Planning including living wills and durable powers of attorney for healthcare is a highly relevant topic aiming to increase patient autonomy and reduce medical overtreatment. Data from patients with head and neck cancer (HNC) are not currently available. The main objective of this study was to survey the frequency of advance directives (AD) in patients with head and neck cancer.
METHODS
In this single center cross-sectional study, we evaluated patients during their regular follow-up consultations at Germany's largest tertiary referral center for head and neck cancer, regarding the frequency, characteristics, and influencing factors for the creation of advance directives using a questionnaire tailored to our cohort. The advance directives included living wills, durable powers of attorney for healthcare, and combined directives.
RESULTS
Four hundred and forty-six patients were surveyed from 07/01/2019 to 12/31/2019 (response rate = 68.9%). The mean age was 62.4 years (SD 11.9), 26.9% were women (n = 120). 46.4% of patients (n = 207) reported having authored at least one advance directive. These documents included 16 durable powers of attorney for healthcare (3.6%), 75 living wills (16.8%), and 116 combined directives (26.0%). In multivariate regression analysis, older age (OR ≤ 0.396, 95% CI 0.181-0.868; p = 0.021), regular medication (OR = 1.896, 95% CI 1.029-3.494; p = 0.040), and the marital status ("married": OR = 2.574, 95% CI 1.142-5.802; p = 0.023; and "permanent partnership": OR = 6.900, 95% CI 1.312-36.295; p = 0.023) emerged as significant factors increasing the likelihood of having an advance directive. In contrast, the stage of disease, the therapeutic regimen, the ECOG status, and the time from initial diagnosis did not correlate with the presence of any type of advance directive. Ninety-one patients (44%) with advance directives created their documents before the initial diagnoses of head and neck cancer. Most patients who decide to draw up an advance directive make the decision themselves or are motivated to do so by their immediate environment. Only 7% of patients (n = 16) actively made a conscious decision not create an advance directive.
CONCLUSION
Less than half of head and neck cancer patients had created an advance directive, and very few patients have made a conscious decision not to do so. Older and comorbid patients who were married or in a permanent partnership had a higher likelihood of having an appropriate document. Advance directives are an essential component in enhancing patient autonomy and allow patients to be treated according to their wishes even when they are unable to consent. Therefore, maximum efforts are advocated to increase the prevalence of advance directives, especially in head and neck cancer patients, whose disease often takes a crisis-like course.
Topics: Advance Directives; Cross-Sectional Studies; Female; Head and Neck Neoplasms; Humans; Living Wills; Middle Aged; Surveys and Questionnaires
PubMed: 35395940
DOI: 10.1186/s12904-022-00932-5 -
The Permanente Journal Sep 2022ObjectivesThe study was conducted to estimate the prevalence of advance directive (AD) completion among Black adults vs non-Hispanic White adults within Kaiser...
ObjectivesThe study was conducted to estimate the prevalence of advance directive (AD) completion among Black adults vs non-Hispanic White adults within Kaiser Permanente Northern California integrated health system that includes access to outpatient advance care planning (ACP) specialists and to identify medical services utilization patterns and societal factors that could influence ACP engagement. DesignThe study was carried out through retrospective analysis of electronic health record data of active Kaiser Permanente Northern California members from January 1, 2013 to December 31, 2017, who were age 55 and older, and represented 572,466 active members, of which 11.7% were Black adults. The primary objective was AD completion comparing Black adults to non-Hispanic White adults. Demographic data included age, sex, comorbidities (Charlson comorbidity score ≥ 3) and medical services utilization (inpatient, outpatient, and emergency department [ED] use). Sociodemographic data derived from census data that include census block demographics and head of household educational attainment were utilized. ResultsBlack adults were younger, but had a higher burden of comorbidities (Charlson comorbidity score ≥ 3, 25.3% vs 19.3%) and were more likely to have multiple ED visits (6.7% vs 3.3%) compared to non-Hispanic White adults. The crude AD completion rate was lower among Black adults (10.0% vs 20.3%), and after adjusting for age and health system service area, the difference remained largely unchanged (11.7% vs 20.3%) compared to non-Hispanic White adults. ConclusionsAmong Kaiser Permanente Northern California members with access to outpatient ACP specialists, Black adults were only half as likely to complete an AD. This disparity was only slightly attenuated when standardized for age and health system service area. In addition, Black adults were also less likely to use outpatient services and more likely to use ED services.
Topics: Adult; Advance Care Planning; Advance Directives; Black or African American; Delivery of Health Care, Integrated; Humans; Middle Aged; Retrospective Studies
PubMed: 35974437
DOI: 10.7812/TPP/21.190