Integrated end of life care: the role of social services

Abstract

Roberto Nuno-Solinis, Director O+berri, Basque Institute for Healthcare InnovationCorrespondence to: Roberto Nuno-Solinis, Director O+berri, Basque Institute for Healthcare Innovation, Ronda de Azkue,1 - Torre del BEC 48902 Barakaldo Spain, Phone: +34 94 453 85 00, Fax: +34 94 453 04 65, E-mail: nuno@bioef.org‘To allow people the deaths they want, end of life caremust be radically transformed…’. (Leadbetter C [1])It is estimated that 75% of the population in industria-lised countries will die from chronic diseases andmost of them with multiple chronic conditions [2]. Endof life care for multimorbid patients is particularly com-plex and in most health and care systems fragmentedand uncoordinated. More importantly, highly medica-lised and hospital-centric care often leads to overtreat-ment and over use of resources, but this overtreatmentrarely avoids unnecessary suffering.To address people’s preferences, open conversationsand advance care plans are needed. These shouldbe flexible enough to cater for different culturalapproaches to dying and to allow the implementationof appropriate care models that can improve the endoflifeprocess,increasefamilies’andrelatives’satisfac-tion and avoid unnecessary inpatient and emergencyutilisation [3].Palliative care aims to prevent and alleviate thesymptoms of illness for people when curative treat-ment is no longer possible. This care should alsoaddress the wider psychological, social and spiritualneeds of people as they approach death. Althoughmost evidence and expertise come from palliativecare for oncologic patients, this type of care is alsouseful for people with advanced chronic conditionsand at risk of deteriorating and dying. Advances inthe identification of these patients through the devel-opments of several instruments have facilitated theimplementation of palliative care in non-oncologicpatients.Although palliative care can be delivered successfullyin different institutional settings such as hospitals andhospices, or at home, there is an increasing interest inthe latter. Most people prefer to remain in their homeat this time of their life. Various models of home-basedend of life care exist, ranging from those that primarilyoffer nursing and personal care to others that involvemultidisciplinary specialist teams. The impact of theseprogrammes shows that more people are able to dieat home as well as a reduction in the utilisation ofunplanned hospital care [4]. Recent reports in theUK have covered the results of several successfuland well-known models such as Marie Curie [5] andMacmillan [6].However, these models are not widely deployed inmost high-income countries and as a consequencemost people with advanced diseases still die in hospi-tals. Although effective care integration is recognisedas a key success factor for end of life care [7], manyinitiatives are stand-alone programmes and the poten-tial of social support services is often neglected. Infact, palliative care has been largely considered to bea group of services provided only from health care sys-tems and out of the social care responsibilities.Nevertheless, social support services are perfectlypositioned to help develop a more efficient and inte-grated model of palliative care that takes into accountresources and networks (caregivers, communities,etc.) beyond the health care system.In the Basque Country (Spain), a social innovation pro-ject provides an example of how the involvement ofsocial support and companionship services in end oflife care can achieve impressive results, such as reduc-tions in health care utilisation estimated at 8.000 eurosper case [8]. This programme called SAIATU (‘to try’ inBasque language) has filled the gap in end of life care,migrating several hospice values and skills to homecare. A simple service that is fast response and familycentred basing the care on the actual needs of thefamily and empowering them in caring for their loved