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Guest Editorial
A welcome dilemma: setting priorities for the 12th EAPC Congress Esther Schmidlin
The 12th Congress of the European Association for Palliative Care (EAPC) is now just a few weeks away, and as a member of the EAPC’s Board and a nurse with an active role in the community, I have been looking through the scientific programme with interest. Many important topics will be presented and discussed— how to choose which sessions to attend? Regretting that I can’t split myself into two or three people, I have to think about what really concerns me the most and set priorities. This year my daily work shall guide me. Working as a consulting nurse in a ‘Mobile Palliative Care Team’ in Switzerland, I am confronted with highly challenging situations every day. This Monday, a patient with advanced pancreatic cancer expressed her wish to die at home. She wondered what the complications might be, how she and her husband should prepare themselves, and what would happen if she fell into a coma. Questions such as these certainly facilitate communication about end-of-life choices and allow people to prepare themselves for what may come. Nevertheless, I found this conversation very challenging, because the couple also signalled that they were not quite ready to hear information about the illness trajectory or the dying process. Unable to elaborate at this meeting, I left without clear ideas about their choices and without informing them about the existing procedures and medications that might alleviate their fears. Looking through the programme of the EAPC congress, I will surely listen to the presentation ‘Voices from the community: people’s perspectives on preferred priorities for care and communication at the end of life’, as well as ‘Recognising dying and the interplay between patients, families and professionals in palliative home care’ to gain more insights and guidance into similar situations.
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On Tuesday I visited a patient with advanced lung fibrosis. While elaborating his fears of suffocation, dependency, loss of control, and loss of dignity, he informed me that he had called on an organization that provides medication to allow people to commit suicide. In this consultation, I was able to introduce him to alternative ways of dealing with shortness of breath and his fear of suffocation (including the option of palliative sedation if all else fails), but building a helpful strategy to respond to his perceived loss of dignity is much more complex. Several lectures at the Congress deal with the various issues I encountered in dealing with this patient, including ‘Development of a complex intervention: a dignity care pathway for use by community nurses with people receiving end of life care at home’ and the symposium ‘How should palliative care deal with patients requesting PAS or euthanasia’ to name just two. Then on Thursday, all of the regional Mobile Palliative Care Teams met to develop guidelines to perform palliative sedation at home safely. We discussed the competencies that are needed, which people need to be accessible 24/7, and what support informal and formal caregivers need in order to cope with this exceptional procedure. As well as the EAPC White Paper on sedation, several lectures at the Congress will certainly provide helpful knowledge of this delicate therapeutic option. I look forward to hearing ‘How much longer will it take? The role of the family in the palliative sedation trajectory’. Finally, on the Friday I visited a 90-yearold man with advanced dementia at his home. Over the last 2 weeks the patient had developed pressure sores, and he increasingly suffers from dyspnoea, pulmonary secretion, fever, and a cough. Although the primary care team realized that this man’s dying process has started,
they responded to the despair and pain of the family. The patient’s inability to swallow prompted them to feed and hydrate him through a nasogastric tube with a total of 2500 ml fluid for over a week. This was a challenging situation: our mobile team appreciated all the care and dedication that the patient had been given, but we also had to discuss the consequences of the over-hydration. Surely, the free communication sessions at the Congress, such as ‘Palliative care in advanced dementia’ and ‘Guidelines on the end-of-life care of people with dementia’, will help us in responding to the educational needs of primary health professionals as well as family members. As a frontline nurse, up-to-date clinical knowledge, practical experience, and educational skills are equally important, so I appreciate the abundant opportunities to meet, listen to, and exchange with other dedicated nurses and different professionals in this field—I am sure the EAPC Congress will be both inspiring and rewarding! Il JPN
Esther Schmidlin is a Nurse Consultant, Clinical Nurse, and Nurse Educator in Switzerland, and she also sits on the Board of the European Association for Palliative Care. International Journal of Palliative Nursing 2011, Vol 17, No 4
