Preferences of patients with heart failure for prognosis communication

Caldwell, Patricia; Arthur, Heather M.; Demers, Catherine

doi:10.1016/s0828-282x(07)70829-2

Cited by 81 publications

(107 citation statements)

References 10 publications

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“…However, it is under conditions of uncertainty (and precisely because of those conditions) that a care plan should be implemented that is inclusive of and responsive to EOL issues for patients who have HF. Patients have voiced a preference for such discussions to begin when they are not severely debilitated by their illness (9). Failure to engage patients and their families in discussions about EOL issues may deprive them of opportunities to consider possible alternatives, and make life and treatment decisions they want to make.…”

Section: Discussionmentioning

confidence: 99%

“…Specifically, this illness trajectory has contributed to uncertainty about predicting EOL in patients who have advanced HF (7,8) and the tendency to avoid discussions regarding EOL issues (9). Worsening symptoms, progressive decreases in functional capacity (1,10), an increasing frequency of hospitalizations, lower quality of life and increased reliance on informal caregivers (6) are common in patients who have advanced HF.…”

mentioning

confidence: 99%

“…Outpatients with advanced HF attending a heart function clinic have said that they would prefer to have opportunities to discuss prognostic possibilities in a supportive, hopeful and open way when they feel well enough to process and participate in activities related to planning for EOL (9). While it is essential that the planning and provision of EOL care for patients who have advanced HF is informed by their perspectives and needs, little is known about these needs from patients who are hospitalized because of advanced HF and for whom EOL planning and care is directly relevant.…”

mentioning

confidence: 99%

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Mind the gap: Opportunities for improving end-of-life care for patients with advanced heart failure

Strachan

Ross

Rocker

et al. 2009

Canadian Journal of Cardiology

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H eart failure (HF) is a complex and progressive condition associated with high morbidity and mortality rates, and considerable health resource use (1,2). Approximately 500,000 Canadians are living with HF and 50,000 new cases are diagnosed annually (3). Based on increases in the numbers of the aging population and improvements in the treatment of myocardial infarction, it is projected that the incidence of HF will double by 2025 (2). A recent analysis of 9943 patients in Ontario who were followed after an index hospitalization for HF identified a median survival rate of 2.4 years (4). Of these, patients who had a left ventricular ejection fraction of less than 30% had a one-year mortality rate of 33.3% and a five-year mortality rate of 65.8%. The high morbidity and mortality rates in patients who have HF clearly indicate that care of this patient population must be based on knowledge of what patients perceive as important issues related to end-of-life (EOL) care.Patients with HF tend to have a fluctuating trajectory of illness that has promoted a focus on acute care and optimization of treatment up to the time of death; this focus creates challenges for EOL planning and care (5,6). Specifically, this illness trajectory has contributed to uncertainty about predicting EOL in patients who have advanced HF (7,8) and the tendency to avoid discussions regarding EOL issues (9). Worsening symptoms, progressive decreases in functional capacity (1,10), an increasing frequency of hospitalizations, lower quality of life and increased reliance on informal caregivers (6) BACKGROUND:Patients with advanced heart failure (HF) experience progressive symptoms, decreased quality of life, and more frequent hospitalizations as they approach the end of life (EOL). Understanding patient perspectives and preferences regarding EOL issues is necessary to identify key opportunities for improving care. OBJECTIVE: To identify, from the patient's perspective, the major opportunities for improving EOL care for patients hospitalized because of advanced HF. METHODS: A cross-sectional survey of patient perspectives regarding EOL care was administered via interview of 106 hospitalized patients who had advanced HF in five tertiary care centres across Canada. The study compared which aspects of EOL care patients rated as 'extremely important' and their level of satisfaction with these aspects of EOL care to identify key opportunities for improvement of care. RESULTS:The greatest opportunities for improvement in EOL care were reducing the emotional and physical burden on family, having an adequate plan of care following discharge, effective symptom relief and opportunities for honest communication. The three most important issues ranked by patients were avoidance of life support if there was no hope for a meaningful recovery, communication of information by the doctor and avoidance of burden for the family. CONCLUSIONS: Advanced care planning that seamlessly bridges hospital and home must be standard care for patients who have advanced HF. Componen...

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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Mind the gap: Opportunities for improving end-of-life care for patients with advanced heart failure

Strachan

Ross

Rocker

et al. 2009

Canadian Journal of Cardiology

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“…There is a lack of data collection, surveillance and ongoing monitoring to provide new insights and encourage researchers to develop strategies for endof-life planning and care. While some evidence is emerging (33), studies are needed surrounding the effectiveness of symptom identification and management in patients with advanced HF, and the content and process of discussions about disease progression and symptom management. We need a better understanding of when, how and where patients should plan for and receive end-of-life planning and care.…”

Section: Knowledge Gapsmentioning

confidence: 99%

End-of-life planning in heart failure: It should be the end of the beginning

Howlett

Morrin

Fortin

et al. 2010

Canadian Journal of Cardiology

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Cardiovascular disease (CVD) is a chronic, progressive, incurable condition characterized by periods of apparent stability interspersed with acute exacerbations. Despite many important advances in its treatment, approximately one-third of deaths in Canada each year result from CVD. While this might lead one to assume that a comprehensive medical approach exists to the management of this inevitable outcome, the reality is much different. The current Canadian medical model emphasizes the management of acute exacerbations of CVD during which end-of-life issues figure frequently and prominently, although in a setting that is inappropriate to address the comprehensive needs of patients and their families. As a result, end-of-life care was made a theme of the recently reported Canadian Heart Health Strategy and Action Plan (www.chhs-scsc.ca). From this, several recommendations are made, central to which is the need to reframe CVD as a condition ideally suited to a chronic disease management approach. In addition, replacement of the term 'palliative care' with the term 'end-of-life planning and care' is proposed to foster earlier and more integrated comprehensive care, which, it is proposed, denotes the provision of advanced care planning, palliative care, hospice care and advanced directives, with a focus on decision making and planning. Finally, end-of-life planning and care should be a routine part of assessment of any patient with CVD, should be reassessed whenever important clinical changes occur and should be provided in a manner consistent with relevant CVD practice guidelines. Specifically, a Canadian strategy to improve end-of-life planning and care should focus on the following:• Integrated end-of-life planning and care across the health care system; • Facilitated communication and seamless care provision across all providers involved in end-of-life planning and care; • Adequate resources in the community for end-of-life planning and care; • Specialized training in sensitive communication and supportive care as part of core training for all members of the interdisciplinary care team; • Measurement of key performance indicators for end-of-life planning and care; and • Research into effective end-of-life planning and care. Heart failure is an advanced form of CVD with very high morbidity, mortality and burden of care, making it an ideal condition for implementation and testing of interventions to improve end-of-life planning and care. Les maladies cardiovasculaires (MCV) sont des maladies chroniques, évolutives et incurables caractérisées par des périodes de stabilité apparente entrecoupées d'exacerbations aiguës. Malgré les nombreux progrès importants du traitement, environ le tiers des décès au Canada découlent d'une MCV. On pourrait penser qu'il existe une approche médicale approfondie pour prendre en charge cette issue inévitable, mais la réalité est bien différente. Le modèle canadien actuel fait ressortir la prise en charge des exacerbations aiguës des MCV pour lesquelles les enjeux de fin de vie ont une ...

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“…In advanced heart failure, patients often experience symptoms that are not typically attributed to heart failure and are less likely to be addressed by health care providers (eg, pain, falls, cognitive problems, mood and anxiety symptoms, functional decline, sleep disturbances and anorexia [43][44][45]). Patients with heart failure are more likely to think of death when hospitalized and, although willing to engage in discussion, they prefer that conversations be initiated by health care providers and at a time when they are still sufficiently well to be active participants (40)(41)(42)(46)(47)(48)(49). However, the timing of death for patients with advanced heart failure remains unpredictable, and palliative care (to identify and manage physical, psychosocial and spiritual problems [50]) should be considered for a substantial proportion of patients who need adequate symptom control but who may not be considered to be at the immediate end of life (51,52).…”

Section: Practical Tipsmentioning

confidence: 99%