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

Abstract

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...

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

“…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.…”

“…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.…”

The transition of palliative care from the hospital to the home: a narrative review of experiences of patients and family caretakers

“…In fact, the dyads stated the need to improve communication between the institutional and community levels. Some of the most frequent perceptions were: the lack of communication and interdisciplinary coordination or the use of hospital management systems as a shield to cover the inability or lack of will upon taking action, 21 the scarce implication of patients and relatives with community PC networks 26 , poor coordination in the continuity of care, 15,16,19,25 fragmentation in care out of the hospital, and scarce community support. 16 Additionally, honesty in communication was especially valued by the dyads; a concrete example is the importance of communicating in clear, delicate and simple manner about the proximity of death.…”

“…15,[17][18][19][20][21][22]26 In relation to the need for contact with the PC team, several dyads stated not having someone to call in case of having doubts about the care for a loved one. 18,20 Some studies, on the contrary, showed quality telephone follow up of the dyads and even described the possibility of expanding access to professionals to 24 hours through information technology tools.…”

“…17,19 With respect to monitoring at home by a health professional, evidence demonstrated that it favored management of medication and control of symptoms, diminishes patient and caregiver uncertainty, facilitates discussion around endof-life themes, provides nutritional advice, helps with handling technical equipment, and gives individuals a sense of security and supervision in the care labor. 15,17,19,20,22,23,27 Lastly, the dyads who did not receive support after hospital discharge described learning how to handle the sick person at home through trial and error, 28 delays when seen by reference personnel in the community due to their unawareness, 15,16,26 expecting little from the home healthcare 22 , and neglect by the attending hospital. 21 Care overload: social support for the family caretaker…”