Grant: Travel Awards - Institute Community Support

Heart failure is a common chronic condition in older adults. It is characterized by symptoms such as tiredness and breathlessness, frequent hospitalizations, and unpredictable decline, all of which impact people's quality of life. However, as people grow older and approach the end-of-life, changes in their life goals and priorities are rarely discussed as part of their care. Worsening this gap in care are current care approaches that emphasize patient education and self-care, putting focus on prevention of decline over addressing end-of-life issues that surface. As a consequence, end-of-life communication is uncommon in the care of people with advanced illness. This study aimed to gain insights on this issue through interviewing older patients with advanced heart failure and their family caregivers. Two main barriers to end-of-life communication were identified: understanding of illness and caregiver readiness to discuss end-of-life care. Participants' described their illness understanding in terms of their daily care routines (e.g. monitoring weight, restricting diet) and by keeping track of previous diagnoses and procedures. However, patients and caregivers did not describe heart failure as a serious illness nor portray their understanding of the implications of having heart failure. Caregivers were reluctant to engage in end-of-life discussions and preferred to wait until patients worsened to have these discussions. This may be a critical barrier as caregivers are integral in helping patients manage on a day-to-day basis. There are important implications from these findings including reducing the burden of decision-making that fall onto caregivers at the end-of-life and ensuring that patients receive care that aligns with their wishes and preferences. Initiating end-of-life communication earlier in advanced illness care can provide patients and families with the opportunity to reassess what is important in their lives and improve the quality of end-of-life.