Dataset Information

Factors Affecting Patients' Preferences for and Actual Discussions About End-of-Life Care.

ABSTRACT:

Context

Discussions about end-of-life care are often difficult for patients and clinicians, and inadequate communication poses a barrier to patients receiving the care they desire.

Objectives

To understand factors that facilitate end-of-life care discussions that guide interventions to improve care.

Methods

We examined baseline data from an ongoing randomized trial to evaluate associations between patients' self-reported desire for, and occurrence of, discussions about end-of-life care and factors influencing these discussions. Factors included emotional symptoms and barriers and facilitators to discussions. The sample included patients with serious illness (n = 473) and their primary or specialty care clinicians (n = 128). Regression analyses were adjusted for confounders and clustered patients under clinicians.

Results

Patients who endorsed each of three barriers to discussions were less likely to have had a discussion with their clinician (P-values ranging from <0.001 to 0.046). One facilitator (having had family/friends who died) was associated with past discussions (P = 0.037), and two facilitators were associated with wanting future discussion (P < 0.001): 1) concerns about future quality of life, 2) worries about being a burden on friends/family. Depression and anxiety were not associated with past discussions. However, patients with more anxiety were more likely to want future discussions (P = 0.001), as were patients with more depressive symptoms who had had discussions in the past (P < 0.001).

Conclusion

The occurrence of, and desire for, patient-clinician communication about end-of-life care is associated with patient factors including communication barriers and facilitators and symptoms of depression and anxiety. Understanding these factors may facilitate design of effective communication interventions.

SUBMITTER: Fakhri S

PROVIDER: S-EPMC5023466 | biostudies-literature | 2016 Sep

REPOSITORIES: biostudies-literature

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Publications

Factors Affecting Patients' Preferences for and Actual Discussions About End-of-Life Care.

Fakhri Shoaib S Engelberg Ruth A RA Downey Lois L Nielsen Elizabeth L EL Paul Sudiptho S Lahdya Alexandria Z AZ Treece Patsy D PD Curtis J Randall JR

Journal of pain and symptom management 20160603 3

<h4>Context</h4>Discussions about end-of-life care are often difficult for patients and clinicians, and inadequate communication poses a barrier to patients receiving the care they desire.<h4>Objectives</h4>To understand factors that facilitate end-of-life care discussions that guide interventions to improve care.<h4>Methods</h4>We examined baseline data from an ongoing randomized trial to evaluate associations between patients' self-reported desire for, and occurrence of, discussions about end- ...[more]

PMID: 27265813

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Project description:BackgroundEnd-of-life discussions (EOLds) occur infrequently until cancer patients become terminally ill.MethodsTo identify factors associated with the timing of EOLds, we conducted a nationwide survey of 864 medical oncologists. We surveyed the timing of EOLds held with advanced cancer patients regarding prognosis, hospice, site of death, and do-not-resuscitate (DNR) status; and we surveyed physicians' experience of EOLds, perceptions of a good death, and beliefs regarding these issues. Multivariate analyses identified determinants of early discussions.ResultsAmong 490 physicians (response rate: 57%), 165 (34%), 65 (14%), 47 (9.8%), and 20 (4.2%) would discuss prognosis, hospice, site of death, and DNR status, respectively, "now" (i.e., at diagnosis) with a hypothetical patient with newly diagnosed metastatic cancer. In multivariate analyses, determinants of discussing prognosis "now" included the physician perceiving greater importance of autonomy in experiencing a good death (odds ratio [OR]: 1.34; p = .014), less perceived difficulty estimating the prognosis (OR: 0.77; p = .012), and being a hematologist (OR: 1.68; p = .016). Determinants of discussing hospice "now" included the physician perceiving greater importance of life completion in experiencing a good death (OR: 1.58; p = .018), less discomfort talking about death (OR: 0.67; p = .002), and no responsibility as treating physician at end of life (OR: 1.94; p = .031). Determinants of discussing site of death "now" included the physician perceiving greater importance of life completion in experiencing a good death (OR: 1.83; p = .008) and less discomfort talking about death (OR: 0.74; p = .034). The determinant of discussing DNR status "now" was less discomfort talking about death (OR: 0.49; p = .003).ConclusionReflection by oncologists on their own values regarding a good death, knowledge about validated prognostic measures, and learning skills to manage discomfort talking about death is helpful for oncologists to perform appropriate EOLds.Implications for practiceOncologists' own perceptions about what is important for a "good death," perceived difficulty in estimating the prognosis, and discomfort in talking about death influence their attitudes toward end-of-life discussions. Reflection on their own values regarding a good death, knowledge about validated prognostic measures, and learning skills to manage discomfort talking about death are important for improving oncologists' skills in facilitating end-of-life discussions.

Project description:ImportanceIn China, little is known about end-of-life (EOL) care preferences of patients with terminal cancer. Understanding these patients' treatment preferences is needed to improve patient-centered health care, better inform surrogates and medical staff about patient preferences, and enhance the quality of EOL care.ObjectiveTo examine preferences for EOL care among patients with terminal cancer in China.Design, setting, and participantsIn this survey study, patients older than 50 years who had terminal cancer were randomly selected from medical records at a single hospital in China. Data on patients' EOL care preferences were collected by discrete choice experiment (DCE) from August to November 2018 and were analyzed from October 2020 to March 2021.Main outcomes and measuresThe main outcome was patient preferences in EOL care, derived using a mixed logit model. Each DCE scenario described 6 attributes: hospitalization days, life extension, quality of life, adverse treatment events, place-of-death preference, and out-of-pocket costs. The marginal willingness to pay (WTP) in US dollars was estimated from regression coefficients.ResultsOf 188 patients selected for the survey, 183 participated (97.3%). Among the respondents, the mean [SD] age was 61 [8.4] years, and 128 (69.8%) were male. Patients' preferences for moderate increase in survival time, better quality of life, death at home, and lower out-of-pocket costs were significantly associated with their choices between treatment models. Extending life by 10 months (vs 4 months: β, 1.63; 95% CI, 0.81-2.44) and a better quality of life (very good vs poor: β, 1.79; 95% CI, 0.96-2.62) were the most important attributes to patients. The uptake rate for a treatment scenario increased by 61.6% when the quality of life improved from poor to very good, and when life extension increased from 4 months to 10, the uptake rate increased by 57.2%. The uptake increased by 12.5% when the place of death changed from hospital to home. However, it decreased by 31.4% when the costs increased to $21 174. The study found a WTP of $38 854 (95% CI, $19 468-$95 096) to improve quality of life from a poor to a very good level, substantially higher than the WTP for a life extension of 6 months ($35 308; 95% CI, $17 745-$80 279) or 1 year ($27 572; 95% CI, $16 389-$58 027) compared with the baseline scenario of a 4-month extension. Patients were willing to pay $8860 (95% CI, $621-$26 474) to die at home rather than in a hospital.Conclusions and relevanceThe findings suggest that in addition to extending life moderately for patients with terminal cancer, improving quality of life during EOL care and supporting home deaths may deserve greater attention. The findings also suggest that physicians and surrogates should ask about patients' care preferences and better inform them of their choices to improve EOL care outcomes.

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.

Dataset Information

Factors Affecting Patients' Preferences for and Actual Discussions About End-of-Life Care.

Context

Objectives

Methods

Results

Conclusion

Publications

Factors Affecting Patients' Preferences for and Actual Discussions About End-of-Life Care.

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