CARDIAC AND CIRCULATORY PROBLEMS: Edited by James Beattie
Heart failure is a complex clinical syndrome in which the initially compensatory neurohumoral activation in response to left ventricular systolic dysfunction becomes maladaptive, resulting in significant sodium and water retention and multiorgan failure in the terminal phase. Despite the widespread application of evidence-based therapy as enshrined in clinical guidelines, heart failure remains a chronic progressive and ultimately fatal condition, with only 25% surviving 5 years from presentation . Across western societies, the prevalence of this condition is increasing due to ageing of the general population and more aggressive treatment of the common aetiological precursors such as acute myocardial infarction and hypertension.
There are about one million people in the UK and half a million in Canada living with chronic heart failure. With their families, they are trying to cope with the significant physical and emotional symptoms, complex therapeutic regimens, multiple hospital visits and lifestyle adjustments imposed by this condition. The symptomatic and mortality burdens conferred by heart failure on such individuals are widely acknowledged as equivalent to those from cancer [2,3]. Over the past 15 years, heart failure has been in the vanguard of the expansion of palliative care beyond its founding alignment with oncology. At a workshop of the 18th International Congress on Palliative Care in Montreal, we sought the views of attendees on their perception of evolving heart failure palliative care services.
Several themes emerged from an open discussion and description of their experiences. The language used was in itself felt to be relevant. Despite the ominous nomenclature implied in the term ’heart failure’, there was an impression that many patients failed to appreciate the seriousness of their diagnosis, while ’cancer’ consistently held sway as heralding limited life expectancy. Even the use of the word ’palliative’ was cited as sometimes stigmatic and a potential barrier to patient engagement. Education is fundamental to resolving such misconceptions and central to preserving patient autonomy and promoting the widely endorsed policy of self-management of chronic diseases such as heart failure . From the point of view of the service provider, there was general agreement that, despite many local and some national initiatives, general palliative care and communication skills training remains inadequate for health professionals working outside the cancer arena.
Opening discussion on end-of-life issues, goals of care and treatment preferences is often difficult . Some specialist heart failure nursing staff admitted reticence in initiating these conversations or were hindered by a lack of time, whereas others reported being dissuaded from doing so by cardiologists. The nurse respondents felt that personalized care was denied to some patients who were subjected at times to a guideline-driven treatment paradigm by default, rather than as a result of participating in shared decision-making. The roller-coaster configuration of the heart failure disease trajectory with periods of decline and recovery was cited as contributing to this protocol, and prognostication on an individual basis remains challenging.
In contrast to England, where commissioned models of heart failure care are relatively uniform across the 28 regional cardiac networks and generally incorporate elements of palliative care, there appeared to be wide variation in service configuration between the Canadian provinces. At times, there appeared to be a funding gap for heart failure palliative care compared to the level of resource assigned to cancer. Quite frequently, in smaller local rural hospitals, heart failure care was initially the responsibility of general practitioners who would seek cardiology input as required. For those admitted to hospital in major urban centres, acute heart failure was often the remit of hospitalists with advice from attending cardiologists. However, across all care settings, access to palliative care appeared to more haphazard for heart failure patients compared to those with cancer, even if specialist cardiology and oncology services were co-located. Multidisciplinary team working was reportedly less well developed for heart failure compared to cancer care within some health economies. However, examples of effective practice were also highlighted. The ‘intervenant pivot’ or case management service for oncology patients is one such example from Quebec. These nurses act as professional clinical navigators to educate and support cancer patients, assess and manage their global symptom burden, and coordinate their care as part of a multidisciplinary team . Pivot nurses with similar functions have been incorporated within the heart failure service of the Montreal Heart Institute to promote cohesive care.
Although most of the discourse at this session centred on the experience of healthcare practice in the UK and Canada, international delegates from other countries also contributed to the dialogue and voiced similar opinions. Emerging themes from this workshop in the need for patient and professional education, good communication skills, bringing together the collective expertise of a range of generalists and specialists including palliative care professionals in a multidisciplinary team, and good clinical navigation for the care of heart failure patients, are not new and appear to be universal . Over the past ten years or so we have made significant progress in mainstreaming palliative care as a required component of the treatment of heart failure and this is embedded in clinical guidelines [8,9]. However, in the recently released audit results for adults admitted with heart failure in England and Wales between April 2011 and March 2012, only 3.1% of patients were referred to palliative care on their first admission, and 7.3% on readmission . Palliative care delivery and quality remains patchy. We need to build on the progress made over the past decade and continue to raise awareness of the need to develop and optimize palliative and supportive care services for those with advanced heart failure, to spread examples of good practice, and to drive service improvement for these patients and their families.
J.M.B. and M.C. were supported by NHS Improvement – Heart.
Conflicts of interest
There are no conflicts of interest.
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