Talking About Palliative Care in Heart Failure

This article refers to ‘Which patients with heart failure should receive specialist palliative care?’ by R.T. Campbell et al., published in this issue on pages 1338–1347. There has been impressive progress in the care and treatment of patients with heart failure. Compared to the previous decades, there is a wide range of therapies available to improve survival after the heart failure diagnosis and to improve other outcomes such as hospitalization and quality of life.1 In addition to pharmacological, non-pharmacological and device therapy, disease management programmes, such as heart failure clinics or home-based programmes, also have an effect on survival, readmission rates and quality of life.2, 3 However, even with optimal therapy and care, the prognosis of patients with heart failure is still poor and many of these patients will eventually die of heart failure. Although it is generally recognized that heart failure is a serious condition and equivalent to cancer in terms of symptom burden and mortality, not all patients receive care that prepares them to optimally cope with their heart failure through the stages of the illness.4 Timely discussion of prognosis and the possible trajectory of heart failure can help patients, their families and clinicians to decide on the appropriate type and timing of therapies, optimal symptom relieve and planning of life and planning of care.1 Looking at the World Health Organization (WHO) definition, such an approach can be seen as a palliative care approach, describing the type of care professionals should provide in care in order to meet the complex needs of heart failure patients and their families. The WHO defines palliative care as ‘care that improves quality of life of patients and family members facing problems associated with life-threatening illness through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’.5 In the trajectory of heart failure, goals for treatment may change, treatment needs to be adapted regularly and decisions need to be taken, requiring a good communication between patients, family members and health care professionals. Unfortunately, an open and clear communication about the heart failure trajectory is often lacking and not always performed as recommended.6-8 Although patients with chronic disease often wish to discuss changed treatment goals, patients with heart failure, compared to patients with cancer, receive less information about the imminence of death and available support, and family members less often receive bereavement support.7, 8 In this issue of the Journal, Campbell and colleagues present findings that can help us to improve care for chronic heart failure patients.9 In this article the authors present a definition of need for specialized palliative care in patients hospitalized with heart failure using patient-reported outcome measures. A Kansas City Cardiomyopathy Questionnaire (KCCQ) Summary Score of <29 identified patients who subsequently had specialist palliative care needs. Such a score can help to target patients who might need to be referred to specialist palliative care services and therefore contribute to optimization of quality of care.9 In addition to those patients needing specialist palliative care, a palliative care approach is actually suitable for most of the patients with heart failure. Although heart failure differs in many aspects from cancer, it is recognized that heart failure patients have key typical palliative care needs similar to those with incurable malignant disease.10 A recently published review also describes that palliative care interventions that are combined with heart failure management can improve patient outcomes and decrease costs and utilization of care.11 However, while talking about ‘using a palliative care approach’ or ‘referring to specialist palliative care’ it should also be clear that (specialized) palliative care depends on specific needs of patients and family members at a certain moment with regard to physical, psychosocial and spiritual problems. To receive palliative care in time, it is of vital importance that patients, their family members and health care providers have an open discussion about future expectations. A lack of insight in the heart failure trajectory can increase anxiety and uncertainty in patients and family members, which might affect quality of life.12 If patients have a poor understanding about the heart failure trajectory, it makes it difficult for them to be involved in the care, make choices, plan for the future and prepare for end-of-life, which could lead to a decreased level of patient autonomy. In a nationwide survey in Sweden, we found that communication about prognosis and end-of-life care does not seem to be routine in heart failure care and these discussions could be included more often.13 In interviews with patients with heart failure we also found that most patients want the health care professionals to be honest about the future and help the patient to be prepared for a time when heart failure is deteriorating.14 So, although we know that patients might want to discuss their future, although valuable scoring systems exist and although professionals working with heart failure patients feel knowledgeable to discuss the heart failure trajectory, it still seems difficult to do so. There are a few key issues that can help us as clinicians to talk about the heart failure trajectory. First, preferences from patients and family members during the heart failure trajectory include a good communication with health care providers, comprehensive information, guidance on how to respond to a medical emergency, discussing prognosis and time to deal with practical matters regarding end of life in a respectful way.6 Secondly, patient and families find it important that physical needs (such as control of heart failure symptoms and other symptoms) but also psychosocial needs (e.g. loss of social contacts, increased dependency on others) are recognized. Finally, talking about life and death and about expectations that patients have during the heart failure trajectory can be brought about in different ways, depending on patient preferences and needs. Information about the heart failure trajectory, including conversations about death should be integrated in daily heart failure management and even in our educational tools. A good example is the website heartfailurematters.org provided by the Heart Failure Association of the European Society of Cardiology that has a specific section (Living with heart failure—planning for the end of life) that might help patients and their family members to discuss their expectations of prognosis and care during the heart failure trajectory.15 Furthermore, a Question Prompt List developed specifically for heart failure care with possible questions patients and family members can have during the whole heart failure trajectory, including prognosis and end of life care, is currently tested at this moment in our team. Such a tool can help to make conversations about the heart failure trajectory, death and palliative care more easy from the perspective of patients, family members and health care providers, with the final goal to give patients and their family the optimal (palliative) care they need in every stage during their heart failure trajectory. Conflict of interest: none declared.