EU-funded scientists investigate intricacies of end-of-life care
Looking after its ageing population remains a challenge for Europe; an international team of EU-funded researchers has just published a new study detailing the often overlooked complexities of palliative non-pharmacological care for the elderly. Writing in the journal PLoS Medicine, the team, whose members hail from Australia, Argentina, Germany, Italy, Slovenia, Sweden, Switzerland, New Zealand and the United Kingdom, describe how this type of care is based on complex professional decisions that link physical, psychosocial and existential dimensions into a functional whole. Specifically, the study highlights three key areas that are sometimes overlooked in palliative care: bodily care and contact; a secure, aesthetic and comfortable environment; and death-related rituals. The study was supported by the project OPCARE9 ('A European collaboration to optimise research for the care of cancer patients in the last days of life') project, funded to the tune of more than EUR 2 million under the Seventh Framework Programme's (FP7) 'Health' Theme. The main objective of OPCARE9 was to identify variations in non-pharmacological activities carried out as part of specialised palliative care. The project partners set out to answer the question: What do caregivers do during the final days of their patients' lives, apart from administer drugs? One of the study authors, Dr Olav Lindqvist from the Karolinska Institutet, Sweden comments: 'To be sure, palliative care is all about satisfying fundamental human needs, but what we found in our study was that it entails so much more than one might at first assume. If we are to further develop palliative care, we must learn more about this type of daily caregiving and tease out its nuances.' The team analysed 16 palliative outpatient and inpatient clinics in 9 countries. Nursing staff, doctors and volunteers from each clinic were all asked to record non-pharmacological activities that were carried out during the final days of a patient's life, for three to four weeks. Dr Lindqvist continues: 'The caregivers described different kinds of communication with patients and relatives, from the giving of advice to communication through non-verbal, physical contact. Rituals surrounding dying and death were not only spiritual or religious, but also more subtly existential, legal and professional. One field that has been largely ignored by research is sensory aspects of the caring environment, both at home and in in-patient settings.' An interesting aspect to the study is the focus it puts on non-pharmacological palliative care that is based on a number of complex and sophisticated decisions the caregiver must make. Such decisions relate to what can be done or should not be done, as well as when is the most appropriate time, and who should administer it. Dr Lindqvist explains using the example of oral care: 'It's likely to make the dying person feel better and could ease contact with relatives since it becomes difficult to be close when someone's breath smells strongly. But what happens if the patient refuses oral care? The nursing staff than has to deal with a complicated ethical dilemma. Oral care can also give relatives an opportunity to participate in the caring of a dying relative, and if they do this, it's something that the caregivers must be able to take into consideration.' OPCARE9, which ran from 2008 to 2011, aimed to develop innovative and creative research methodologies and protocols to address identified gaps in knowledge through future international collaboration. The researchers also aimed to identify European quality indicators against which to measure future care in the last days of life, and to identify 'technologies' with which to improve the delivery of care in the final days and hours of life.For more information, please visit:Karolinska Institutet:http://ki.se/ki/jsp/polopoly.jsp?l=en&d=130
Countries
Argentina, Australia, Switzerland, Germany, Italy, New Zealand, Sweden, Slovenia, United Kingdom