Preferences of people with advanced heart failure—a structured narrative literature review to inform decision making in the palliative care setting

Dev, Sandesh; Abernethy, Amy P.; Rogers, Joseph G.; O’Connor, Christopher M.

doi:10.1016/j.ahj.2012.05.023

Cited by 49 publications

(51 citation statements)

References 47 publications

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“…9 Thus, HF patients and family caregivers report minimal communication with providers regarding expectations of illness trajectory, prognostic estimates, symptom management, implantable cardioverter-defibrillator deactivation, and advance care planning. 10,11 Providers often fail to initiate such discussions with patients, 12,13 and when they do, the prognostic estimates may not be well received by patients. 14 Common reasons for lack of GoC conversations include poor patient and family education regarding the progressive downward trajectory of HF, lack of willingness among both patients and providers to discuss end-of-life planning, and difficulty predicting prognosis in HF.…”

Section: Introductionmentioning

confidence: 99%

An Intervention to Enhance Goals-of-Care Communication Between Heart Failure Patients and Heart Failure Providers

Doorenbos

Levy

Curtis

et al. 2016

Journal of Pain and Symptom Management

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Context Heart failure patients contend with a markedly impaired quality of life, experiencing emotional distress and severe physical discomfort that increases in frequency in the last months of life. Improving communication between patients and providers about goals of care has the potential to improve patient-provider communication and patient outcomes. Objectives To determine the effects of a goals-of-care (GoC) intervention compared to usual care on the number of GoC conversations, quality of communication between patients and providers, referrals to palliative care services and completion of advance care directives. Methods A two-group randomized study (n = 40/group) compared a GoC intervention to usual care, conducted in an academic HF clinic. The GoC intervention was a pre-visit patient activation-education, telephone-based intervention delivered by a nurse. The primary outcome of the study was number of GoC conversations between HF patients and HF providers. Secondary outcomes were quality of communication, number of referrals to palliative care and completion of advance directives. Results Patients averaged 58.15±11.26 years of age, with mean LVEF= 30.31±9.72%, and SHFM scores= 95.1±1.60. There was a significant increase in goals-of-care conversations (58% vs. 2.6%, P<0.001) and quality of end-of-life communication (P=0.03) in the GoC group compared to usual care after the intervention. There were no differences between groups on the other outcomes. Conclusion The GoC intervention resulted in more GoC conversations and higher quality communication between HF patients and providers without increased anxiety or depression. Further studies are needed to assess impact on longer-term quality of care and patient outcomes.

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Section: Introductionmentioning

confidence: 99%

An Intervention to Enhance Goals-of-Care Communication Between Heart Failure Patients and Heart Failure Providers

Doorenbos

Levy

Curtis

et al. 2016

Journal of Pain and Symptom Management

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“…10 Prognosis, however, is unpredictable and patients' preferences for care, including quality versus quantity of life, vary. 11 As a result, a patient-centered approach to advance care planning is imperative. However, recent research indicates a lack of adequate personalized education and communication about HF care.…”

Section: Introductionmentioning

confidence: 99%

Palliative Care Interventions for Patients with Heart Failure: A Systematic Review and Meta-Analysis

Diop

Rudolph

Zimmerman

et al. 2017

Journal of Palliative Medicine

163

136

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Objective: To systematically characterize interventions and effectiveness of palliative care for advanced heart failure (HF) patients. Background: Patients with advanced heart failure experience a high burden of distressing symptoms and diminished quality of life. Palliative care expertise with symptom management and healthcare decision-making benefits HF patients. Methods: A systematic PubMed search was conducted from inception to June 2016 for studies of palliative care interventions for HF patients. Studies of humans with a HF diagnosis who underwent a palliative care intervention were included. Data were extracted on study design, participant characteristics, intervention components, and in three groups of outcomes: patient-centered outcomes, quality-of-death outcomes, and resource utilization. Study characteristics were examined to determine if meta-analysis was possible. Results: The fifteen identified studies varied in design (prospective, n = 10; retrospective, n = 5). Studies enrolled older patients, but greater variability was found for race, sex, and marital status. A majority of studies measuring patient-centered outcomes demonstrated improvements including quality of life and satisfaction. Quality-of-death outcomes were mixed with a majority of studies reporting clarification of care preferences, but less improvement in death at home and hospice enrollment. A meta-analysis in three studies found that homebased palliative care consults in HF patients lower the risk of rehospitalization by 42% (RR = 0.58; 95% Confidence Interval 0.44, 0.77). Discussion: Available evidence suggests that home and team-based palliative interventions for HF patients improve patient-centered outcomes, documentation of preferences, and utilization. Increased high quality studies will aid the determination of the most effective palliative care approaches for the HF population.

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“…These define the rate of change in a relational process, and direct the course of important events within it. Here, patient and caregiver capacity is equally diminished by their access to services and other resources [70, 79, 86, 87], and by poor professional support, co-ordination and responsiveness, and continuity of care [44, 51, 68, 70, 79, 86]. Indeed, patients and formal and informal caregivers are often disadvantaged by poorly communicated information about disease processes and symptoms [45, 55, 67, 72, 88, 89].…”

Section: Results: Cognitive Authority and Experienced Controlmentioning

confidence: 99%

Managing expectations: cognitive authority and experienced control in complex healthcare processes

Hunt

May

2017

BMC Health Serv Res

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BackgroundBalancing the normative expectations of others (accountabilities) against the personal and distributed resources available to meet them (capacity) is a ubiquitous feature of social relations in many settings. This is an important problem in the management of long–term conditions, because of widespread problems of non-adherence to treatment regimens. Using long-term conditions as an example, we set out middle range theory of this balancing work.MethodsA middle-range theory was constructed four stages. First, a qualitative elicitation study of men with heart failure was used to develop general propositions about patient and care giver experience, and about the ways that the organisation and delivery of care affected this. Second, these propositions were developed and confirmed through a systematic review of qualitative research literature. Third, theoretical propositions and constructs were built, refined and presented as a logic model associated with two main theoretical propositions. Finally, a construct validation exercise was undertaken, in which construct definitions informed reanalysis of a set of systematic reviews of studies of patient and caregiver experiences of heart failure that had been included in an earlier meta-review.ResultsCognitive Authority Theory identifies, characterises and explains negotiation processes in in which people manage their relations with the expectations of normative systems – like those encountered in the management of long-term conditions. Here, their cognitive authority is the product of an assessment of competence, trustworthiness and credibility made about a person by other participants in a healthcare process; and their experienced control is a function of the degree to which they successfully manage the external process-specific limiting factors that make it difficult to otherwise perform in their role.ConclusionCognitive Authority Theory assists in explaining how participants in complex social processes manage important relational aspects of inequalities in power and expertise. It can play an important part in understanding the dynamics of participation in healthcare processes. It suggests ways in which these burdens may lead to relationally induced non-adherence to treatment regimens and self-care programmes, and points to targets where intervention may reduce these adverse outcomes.

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Preferences of people with advanced heart failure—a structured narrative literature review to inform decision making in the palliative care setting

Cited by 49 publications

References 47 publications

An Intervention to Enhance Goals-of-Care Communication Between Heart Failure Patients and Heart Failure Providers

An Intervention to Enhance Goals-of-Care Communication Between Heart Failure Patients and Heart Failure Providers

Palliative Care Interventions for Patients with Heart Failure: A Systematic Review and Meta-Analysis

Managing expectations: cognitive authority and experienced control in complex healthcare processes

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