The workings of the system were a concern for many of the hospital doctors (box ). Care for patients dying with heart failure was described as uncoordinated, with patients going from hospital to community and back again. Repeated admissions to different consultant teams were common, and patients' medical notes were sometimes said to arrive on the wards after the patient had been discharged or died. A picture emerged of poor quality care for the patients and frustration for the doctors. The lack of continuity in current medical practice was highlighted by the geriatricians and palliative care doctors. All the groups thought that poor support in the community contributed to repeated hospital admissions. Adequate basic services, such as district nurses and social services, were a higher priority than more sophisticated forms of palliative care. Although hospital colleagues empathised with the general practitioner struggling to cope without support, the palliative care doctors and cardiologists were also concerned about the impact of the quality of care provided by general practitioners.
Implicit in the discussions was that care for people dying with heart failure had not been planned. This was most clearly expressed by the cardiologists, who acknowledged the need to develop those formal and informal connections between specialties that are essential to coherent care. All the groups suggested that different models of care in the community might be needed. The concept of a key worker was raised as a possible solution by both general practitioners and cardiologists. This is a model seen in psychiatry, whereby a member of the team coordinates and oversees the care received.
Unlike with cancer the diagnosis of heart failure does not begin with bad news, and when to initiate palliative care is a difficult question that was discussed by all the groups. The path of chronic heart failure is unpredictable, with half of patients dying suddenly (box ). Stories were told of patients being admitted near to death and being “pulled back from the brink.” Other patients were perceived as being quite well but able to switch to being terminal rapidly.
The course of heart failure as a barrier
The uncertain prognosis of heart failure meant that doctors were concerned about the impact on the patients of giving bad news too soon. This was termed the “therapeutic and anti-therapeutic” use of prognostication by one general practitioner, and it generated different concerns in the groups. The major fear of the cardiologists was saying the wrong thing and the patients “losing faith” in their professional carers, whereas the general medicine doctors did not want to see the patients give up the fight for life. The wider implications for the family and carers were raised by the general practitioners.
Increasing openness about prognosis brought with it growing demands on doctors, and patients were thought to need a lot of psychological support. Doctors in all groups portrayed themselves as bad prognosticators, admitting that they may accept the poor outlook late in the illness. Patients, carers, and nurses were all suggested as more realistic predictors. As the beneficial effects of open communication in terminal care were acknowledged, this may have represented an unwillingness to engage with difficult issues.
Although many participants agreed that the general practitioner is a central figure in palliative care for heart failure, there was some questioning of the appropriateness of the involvement of specific groups. The most severe criticism was reserved for the cardiologists, who were charged by all groups with failing to recognise palliative care needs or practise holistically. In contrast to their colleagues' image of them, the cardiologists articulated an approach supporting teamwork, common goals, and a willingness to involve whoever had the appropriate skills. They also seemed to place most importance on dialogue between the specialties to improve care in the future. The palliative care doctors were generally viewed favourably by their colleagues, although the need for their specialty was questioned by some general practitioners, who felt able to manage their own dying patients. For these general practitioners, the palliative care specialists were inaccessible or liable to “steal” the general practitioners' patients. The general practitioners saw themselves at the centre of things, both providing and coordinating care. This was echoed by the geriatricians, who argued for care provided by community services, supported by others (box ). The perceived inability of palliative care doctors to manage heart failure competently and the unwillingness of cardiologists to provide palliative care were used to justify this approach.
Our participants invested some hope in the national service framework as a means of increasing funding in palliative care for heart failure. A need for discussion and links between specialties was acknowledged chiefly by the cardiologists. In contrast, all the groups talked at some length of an enhanced role for nurses (box ). The nurse was seen as a figure who could follow patients into the community after discharge from hospital, liaise between primary and secondary care, ensure that treatments were adhered to, and mobilise appropriate support.