RESUMEN
OBJECTIVE: Palliative care (PC) in heart failure (HF) is beneficial and recommended in international HF guidelines. However, there is a perception that PC is underutilised in HF in the UK. This exploratory study aims to investigate, from a PC perspective, this perceived underutilisation and identify problems with current practice that may impact on the provision of PC in HF throughout the UK. METHODS: A prospective survey was electronically sent to PC doctors and nurses via the UK Association for Palliative Medicine and adult PC teams listed in the UK Hospice directory. RESULTS: We received 499 responses (42%-PC consultants). Although PC provision for patients with HF was widespread, burden on PC services was low (47% received less than 10 referrals annually). While PC was acknowledged to have a role in end-stage HF, there were differing views about the optimal model of care. Levels of interdisciplinary collaboration (58%) and mutual education (36%) were low. There were frequent reports that end-of-life matters were not addressed by cardiology prior to PC referral. Moreover, 24% of respondents experienced difficulties with implantable cardioverter defibrillator deactivation. CONCLUSIONS: Low HF referrals despite widespread availability of PC services and insufficient efforts by cardiology to address PC issues may contribute to the perception that PC is underutilised in HF. The challenges facing PC and HF identified here need to be further investigated and addressed. These findings will hopefully promote awareness of PC issues in HF and encourage debate on how to improve PC support for this population.
RESUMEN
INTRODUCTION: If palliative care is to lead the way towards a new model for integrated care, the ability to share information across the whole of health and social care is essential. Coordinate My Care (CMC) is a service dedicated to preserving dignity and autonomy at the end of life. Its care pathways enable health professionals from primary and secondary care to put the patient at the centre of health care delivery. This service is underpinned by an electronic solution. The CMC record can be accessed 24/7 by all health and social care professionals who have a legitimate relationship with the patient. PATIENTS AND METHODS: The record displays diagnosis, prognosis, advanced care plan, resuscitation status and patients wishes for end of life care patients across London. This article is a review of CMC use and outcomes from August 2010- March 2012. RESULTS: 1087 CMC patient records were analysed. The primary diagnosis was non-cancer in 52.3%, cancer in 46.3% and unknown in 1.4%, 42% of all patients were cared for by generalist only and had no specialist palliative care involvement. At the time of analysis 207 had died. Actual place of death was home 38.6%, care/nursing home 16.4%, hospice 12.1% and 30% in hospital. This equates to 55% of patients dying in their usual place of residence and reflects that 70% died outside of hospital. CONCLUSION: The CMC service has a well defined pathway underpinned by an electronic solution. It has been shown to change culture and deliver fully integrated, personalised end of life care. A pan-London CMC roll out will take place over the next 12 months.
