The Quality of Life in Heart Failure Just Talking About it Will Not Make it Better

Conventional treatment does not prevent heart failure patients from having intrusive symptoms and a poor quality of life (QOL) 1,2. Government initiatives in the UK 3,4, and more widely within Europe, the ESC Task Force Guidelines for the Diagnosis and Management of Heart Failure 5, have published guidance to address these issues. A priority is to improve on the current figure of 20% of patients 6 prescribed the recommended drugs. However, the guidelines also stress the need for a ‘palliative care approach’ which ‘recognises the importance of promoting physical, psychosocial, and sometimes spiritual well being. It emphasises quality of life, good symptom control, a whole person approach, respect for patient autonomy and open sensitive communication’ 3. These objectives are not fanciful but should be provided for all patients as of right 7. If health, ‘a state of complete physical, mental and social well being, and not merely the absence of disease’ 8 is impaired, the QOL, ‘the difference between the patient's perceived expectations and achievement’ 9, deteriorates. Cardiologists, in common with most doctors, treat patients in order to relieve symptoms or to prolong life and assume that this will improve its quality: We have only limited, often second hand, experience of treatments which have the primary purpose of enhancing it. However, persevering with the established strategy when faced with unrelieved symptoms, a poor QOL and inevitable deterioration as happens in advanced heart failure, does not ensure that the patient will ‘feel better’ 10–12. Under these circumstances it is logical to concentrate more on strategies, which are designed to improve QOL. Studies which have evaluated the QOL in heart failure have shown that, as in cancer patients, it is not only affected by symptom and disease severity but also by a complex interaction of physical, social and psychological factors 13,14. These include personal coping strategies, social isolation, a fear of dying, a lack of information about the disease and its treatment, exclusion from management planning, anxiety, depression and insomnia 15–18. Addressing these generic concerns can improve both the QOL and the prognosis 19 even when manipulating conventional treatments does not. However, because patients often do not mention these concerns and because of poor communication with them, a consistent criticism of heart failure management 20, the need for this type of intervention, is often overlooked 1. Many QOL questionnaires used in clinical practice are well tested and give reproducible results 21. However, those which rely on an objective point-score assessment, including some of the most widely used ones 22–24, may be insensitive to the subtle impact of subjective factors such as those just listed 25 and which are also implicit in the definition of QOL 10. The resultant over optimistic assessment of QOL is less likely if questionnaires are used which include patients’ self-assessment of their QOL 25. The paper by Boyd et al. in this issue of the journal is therefore timely. The authors canvassed the views of heart failure patients and their carers, about their health, other concerns and the adequacy of social support provided for them in the last year of life using a prospective, longitudinal, qualitative evaluation. This is a well validated method of assessment 26, which, in contrast to quantitative studies, uses detailed open exploration of issues in which interviewees are encouraged to talk openly rather than to respond to fixed questions. Serial interviews were used to identify changes in the factors, which impair the QOL with disease progression. Common complaints included physical and psychological morbidity, social isolation, inadequate information about their condition, and uncoordinated and limited professional support. The merit of this paper is not the novelty of the findings, some of which are common knowledge, but more that, because of its subjective format, it graphically and clearly shows why the QOL is so poor, explains the frustrations and concerns of the carers, and shows how the factors responsible for the poor QOL change with disease progression. These are valuable insights. The authors also make valid suggestions for changes to management, and for staff and patient educational programmes to address the problems. However, like previous authors, they have not explained how to put their suggestions into practice: Nor have our cardiac societies taken up this challenge, although the need for action was identified many years ago 14. There are a number of reasons, real and imagined, for the delay. The implementation of new treatments is often slow 6, and with this particular issue, specific cultural, professional and organisational barriers to progress have been cited 27. Most suggestions for providing palliative support for heart failure patients envisage collaboration between cardiology, palliative care and primary care teams, which has caused concerns within these groups that they will face excessive demands 28–31. However, these suggestions infer, incorrectly, that cardiologists care for the majority of heart failure patients and that only palliative care teams can provide the palliative care, which most heart failure patients will require. In fact, most hospitalised patients are not cared for by cardiologists but by general physicians or geriatricians 32, and general practitioners already accept that patients often prefer to be treated at home 27. With respect to palliative care services, many patients regard their QOL as satisfactory and so may not want or need them 35,36. Also, the only published, very limited, observations on the demands for palliative care services have shown that currently less than 1% of patients hospitalised with advanced heart failure are referred to palliative care teams 37,38. This is partly because a ‘palliative approach’ 3 is increasingly used by non-palliative care staff 33, as are palliative care treatment protocols and pathways for the care of the dying 34. Several other staff-related factors are also relevant to the provision of palliative care support: The chronic sick appreciate having continuity of care 31, and management plans should therefore provide support for patients’ existing medical carers, not change them for others. Only a minority of cardiologists regard heart failure as their main interest and neither they nor palliative care physicians have the expertise to optimally manage this predominantly elderly, often housebound patient group, with multiple complex clinical problems. There are, however, medical and nursing groups with the relevant experience: geriatricians care for many heart failure patients and are experienced in the management of elderly patients with multiple pathologies, but their potential role in management planning for heart failure has been largely ignored. Specialist heart failure nurses provide high quality management to heart failure patients, and already, some aspects of palliative care 33, while palliative care nurses are increasingly involved with non-cancer patients. Primary care doctors and nurses have a better understanding of individual patient's social and domestic circumstances, which have a major impact on their QOL, than do hospital staff. Thus, by imaginatively involving a wide range of staff, the demands on any one group will be much less than is feared. At the same time, patients would benefit from an improvement in palliative and cardiological support and in the attention given to their other medical and social problems. With this scenario, a realistic role for cardiologists would be to manage patients already in their care, and with the help of palliative care teams and others with relevant expertise, to provide training and clinical support for colleagues and nurses who are treating the majority of heart failure patients. A strategy to provide palliative care for heart failure patients would be incomplete without an accompanying research programme. This should initially concentrate on confirming the efficacy of established palliative care treatment protocols in patients with heart failure, developing new symptom control programmes and on piloting different service models to deliver palliative care support. We need to move on from documenting the problems of heart failure patients to developing realistic, practical solutions to them. As cardiologists we have a responsibility to contribute to this process 3–5 through our national and international societies.