What matters most in end-of-life care: perceptions of seriously ill patients and their family members

Heyland, Daren K.; Dodek, Peter; Rocker, Graeme; Groll, Dianne; Gafni, Amiram; Pichora, Deb; Shortt, Sam; Tranmer, Joan; Lazar, Neil M.; Kutsogiannis, Jim; Lam, Miu

doi:10.1503/cmaj.050626

Cited by 571 publications

(562 citation statements)

References 23 publications

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“…In contrast, stories about encounters characterized by humour and laughter seemed to strengthen family members’ abilities to handle unfamiliar and sometimes frightening situations. A number of authors have emphasized that actively approaching and communicating with family members has a strong impact on their experiences of EoL care (Dose et al, 2015; Dosser & Kennedy, 2012; Heyland et al, 2006; Spichiger, 2009; Stajduhar et al, 2011), and our results suggest that staff contributed to whether environments were perceived as supportive or not.…”

Section: Discussionsupporting

confidence: 49%

“…Family members in this study described the importance of knowing what to expect and why, especially as curative and palliative care often coexisted and sometimes collided in the acute-care setting, and conversations about the upcoming EoL of the severely ill person did not always occur. Both Heyland et al (2006) and Stajduhar et al (2011) point to how lack of information can lead to family members’ guessing and struggling to understand the current situation.…”

Section: Discussionmentioning

confidence: 99%

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Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

Hajradinovic

Tishelman

Lindqvist

et al. 2018

International Journal of Qualitative Studies on Health and Well

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Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person. Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings. Results: The interpretive description analysis process resulted in three constructed themes—Aesthetic and un-aesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times. Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.

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Section: Discussionsupporting

confidence: 49%

Section: Discussionmentioning

confidence: 99%

Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

Hajradinovic

Tishelman

Lindqvist

et al. 2018

International Journal of Qualitative Studies on Health and Well

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“…Recent studies provide insights into patient and family member perspectives on communication about goals of care in advanced HF,3, 4, 11, 12 but comparatively little is known about the perspective of cardiology clinicians. Before designing and evaluating interventions to improve decision‐making about goals of care for patients with advanced HF, an understanding of clinicians' perceived barriers is needed so that interventions can be tailored to overcome these barriers 17.…”

Section: Discussionmentioning

confidence: 99%

“…Previous studies have provided insights into the perspectives of seriously ill hospitalized patients with HF, and their families, and have identified that EOL communication and decision‐making are important to patients and families, but their needs related to these issues remain unmet 3, 4, 11, 12. Before developing tailored solutions to improve communication and decision‐making about goals of care for hospitalized patients with advanced HF, there is a need to also understand the barriers and facilitators to this process from clinicians' perspectives.…”

Section: Introductionmentioning

confidence: 99%

Barriers to goals of care discussions with hospitalized patients with advanced heart failure: feasibility and performance of a novel questionnaire

et al. 2016

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AimsGood end‐of‐life communication and decision‐making are important to patients with advanced heart failure (HF) and their families, but their needs remain unmet. In this pilot study, we describe the feasibility and performance of a novel questionnaire aimed at identifying barriers and solutions to improve communication and decision‐making about goals of care for hospitalized patients with advanced HF.MethodsWe distributed questionnaires to staff cardiologists, cardiology trainees, and cardiology nurses who provide care for HF patients at a Canadian teaching hospital. The questionnaire asked about the importance of various barriers to goals of care discussions. It also asked participants to rank their willingness to engage in goals of care discussions and their views on other clinicians could engage in such discussions.ResultsOf 76 clinicians, 44 (58%) completed the questionnaire (median completion time, 17 min). Individual survey questions had few missing responses (0% to 2%) for questions about barriers to goals of care discussions. There was appreciable discrimination of the importance of different barriers (mean scores 2.2 to 6.0 on a 7‐point scale). Preliminary data suggest that clinicians perceive patient and family factors, such as difficulty accepting a poor prognosis, as the most important barriers preventing goals of care discussions.ConclusionsIn this pilot study, we have demonstrated the feasibility of a novel questionnaire to be used in a larger multi‐centre study of end‐of‐life HF care. Essential information will be obtained to inform the design and evaluation of interventions that seek to improve communication and decision‐making about goals of care with HF patients.

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“…The study methodology and overall study results have been published (12,13) and, therefore, will be reported in brief. A questionnaire was developed and tested to elicit the level of importance and satisfaction with elements of EOL care (13).…”

Section: Methodsmentioning

confidence: 99%

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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What matters most in end-of-life care: perceptions of seriously ill patients and their family members

Cited by 571 publications

References 23 publications

Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

Barriers to goals of care discussions with hospitalized patients with advanced heart failure: feasibility and performance of a novel questionnaire

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

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