Dataset Information

Hope and advance care planning in patients with end stage renal disease: qualitative interview study.

ABSTRACT:

Objective

To understand hope in the context of advance care planning from the perspective of patients with end stage renal disease.

Design

Qualitative in-depth interview study.

Setting

Outpatient department of a university affiliated nephrology programme.

Participants

19 patients with end stage renal disease purposively selected from the renal insufficiency, haemodialysis, and peritoneal dialysis clinics.

Results

Patients' hopes were highly individualised and were shaped by personal values. They reflected a preoccupation with their daily lives. Participants identified hope as central to the process of advance care planning in that hope helped them to determine future goals of care and provided insight into the perceived benefits of advance care planning and their willingness to engage in end of life discussions. More information earlier in the course of the illness focusing on the impact on daily life, along with empowerment of the patient and enhancing professional and personal relationships, were key factors in sustaining patients' ability to hope. This helped them to imagine possibilities for a future that were consistent with their values and hopes. The reliance on health professionals to initiate end of life discussions and the daily focus of clinical care were seen as potential barriers to hope.

Conclusions

Facilitated advance care planning through the provision of timely appropriate information can positively enhance rather than diminish patients' hope. Current practices concerning disclosure of prognosis are ethically and psychologically inadequate in that they do not meet the needs of patients.

SUBMITTER: Davison SN

PROVIDER: S-EPMC1626305 | biostudies-literature | 2006 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Hope and advance care planning in patients with end stage renal disease: qualitative interview study.

Davison Sara N SN Simpson Christy C

BMJ (Clinical research ed.) 20060921 7574

<h4>Objective</h4>To understand hope in the context of advance care planning from the perspective of patients with end stage renal disease.<h4>Design</h4>Qualitative in-depth interview study.<h4>Setting</h4>Outpatient department of a university affiliated nephrology programme.<h4>Participants</h4>19 patients with end stage renal disease purposively selected from the renal insufficiency, haemodialysis, and peritoneal dialysis clinics.<h4>Results</h4>Patients' hopes were highly individualised and ...[more]

PMID: 16990294

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Project description:BackgroundClinicians 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.MethodsThis 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.ResultsIn 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).ConclusionsThe 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 summaryMany 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.

Project description:BackgroundAdvance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP.MethodsWe conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees' responses.ResultsWe interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were "advance care planning", "treatment plan", "disease trajectory" and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP.ConclusionsWe conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness.

Project description:ImportanceMedicare beneficiaries with end-stage renal disease (ESRD) are a medically complex group accounting for less than 1% of the Medicare population but more than 7% of Medicare fee-for-service payments.ObjectiveTo evaluate the association of the Comprehensive End-Stage Renal Disease Care (CEC) model with Medicare payments, health care use, and quality of care.Design, setting, and participantsIn this economic evaluation, a difference-in-differences design estimated the change in outcomes for 73 094 Medicare fee-for-service beneficiaries aligned to CEC dialysis facilities between the baseline (from January 2014 to March 2015) and intervention periods (from October 2015 to December 2017) relative to 60 464 beneficiaries at matched dialysis facilities. In the CEC model, dialysis facilities, nephrologists, and other providers partner to form ESRD Seamless Care Organizations (ESCOs), specialty-oriented accountable care organizations that coordinate care for beneficiaries with ESRD. ESCOs with expenditures below a benchmark set by the Centers for Medicare & Medicaid Services are eligible to share in savings if they meet quality thresholds. A total of 685 dialysis facilities affiliated with 37 ESCOs participated in the CEC model as of January 2017. Thirteen ESCOs joined the CEC model on October 1, 2015 (wave 1), and 24 ESCOs joined on January 1, 2017 (wave 2). Patients with ESRD who were aligned with CEC dialysis facilities were compared with patients at matched dialysis facilities.Main outcomes and measuresMedicare total and service-specific payments per beneficiary per month; hospitalizations, readmissions, and emergency department visits; and select quality measures.ResultsRelative to the comparison group (n = 60 464; 55% men; mean [SD] age, 63.5 [14.4] years), total Medicare payments for CEC beneficiaries (n = 73 094; 56% men; mean [SD] age, 63.0 [14.4] years) decreased by $114 in payments per beneficiary per month (95% CI, -$202 to -$26; P = .01), associated primarily with decreases in payments for hospitalizations and readmissions. Payment reductions were offset by shared savings payments to ESCOs, resulting in net losses of $78 in payments per beneficiary per month (95% CI, -$8 to $164; P = .07). Relative to the comparison group, CEC beneficiaries had 5.01 fewer hospitalizations per 1000 beneficiaries per month (95% CI, -8.45 to -1.56; P = .004), as well as fewer catheter placements (CEC beneficiaries with catheter as vascular access for periods longer than 90 days decreased by 0.78 percentage points [95% CI, -1.36 to -0.19; P = .01]) and fewer hospitalizations for ESRD complications (CEC beneficiaries were 0.11 percentage points less likely [95% CI, -0.20 to -0.02; P = .01] to be hospitalized in a given month). Total dialysis sessions and payments increased, suggesting improved adherence to dialysis treatments.Conclusions and relevanceEarly findings from the CEC model demonstrate that a specialty accountable care organization model focused on a particular population was associated with reduced payments and improved quality of care. Future research can assess the longer-term outcomes of the CEC model and its applicability to populations with other complex chronic conditions.

Project description:BackgroundPrevious studies have demonstrated that early pre-end-stage renal disease (ESRD) nephrology care could improve postdialysis prognosis. However, less is known about the specific types of interventions responsible for the improved outcomes. We hypothesized that more frequent predialysis laboratory testing is associated with better postdialysis outcomes in incident ESRD patients.MethodsIn all, 23?089 patients with available outpatient laboratory tests performed during the 2-year predialysis (i.e. prelude) period were identified from a total of 52?172 American veterans with chronic kidney disease (CKD) transitioning to dialysis between October 2007 and September 2011. The associations between the frequency of combined laboratory tests, including serum creatinine, serum potassium and hemoglobin (test trio), with postdialysis mortality and hospitalization were examined in multivariable adjusted Cox and logistic regression models.ResultsWhen entering the 2-year prelude period, the mean age (Standard Deviation) of the patients was 66.2 (SD 11.3)?years and the mean estimated glomerular filtration rate was 46.8 (SD 23.9)?mL/min/1.73 m2. In all, 14% of patients had the test trio performed less than twice in 24?months and 8.9% had the trio measured more often than every other month. Over a 2.5-year median postdialysis follow-up period, 15?303 (66.3%) patients died (mortality rate 260/1000 patient-years). The adjusted hazard ratio of all-cause mortality and adjusted odds ratio of the composite of hospitalization or death associated with lab testing done >12/24?months compared with 2-?4/24 months were 0.68 [95% confidence interval (CI) 0.65-0.73] and 0.70 (95% CI 0.62-0.79), respectively.ConclusionsMore frequent laboratory testing in patients with advanced CKD is associated with better clinical outcomes after dialysis. Further examination in clinical trials is needed before the implementation of more frequent laboratory testing in clinical practice.

Dataset Information

Hope and advance care planning in patients with end stage renal disease: qualitative interview study.

Objective

Design

Setting

Participants

Results

Conclusions

Publications

Hope and advance care planning in patients with end stage renal disease: qualitative interview study.

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