Preferred Priorities For Care Research Articles

IMPACT OF AN EDUCATION PROGRAMME FOR HEALTH PROFESSIONALS ON SUPPORTING PREFERRED PRIORITIES FOR CARE DISCUSSIONS WITH PATIENTS

BackgroundThis poster describes an audit conducted by the Community Integrated Advance Care Planning Team for St Helens and Knowsley of documentation by patients of their Preferred Priorities for Care and...

TO INTEGRATE OR NOT TO INTEGRATE

The Development of an Integrated Community Advance Care Planning Service across neighbouring Boroughs and its impact on the uptake of End of Life Care Tools.BackgroundThe first Advance Care Facilitator was...

Achieving preferred priorities for care (PPC): an audit of hospital to home discharges

IntroductionIncreasingly more patients wish to die at home. However it has been identified patients and their carers experience poor hospital discharges as a result of fragmented communication and inadequate co-ordination...

Promoting end of life care across care homes: the role of the specialist palliative care nurse

In 2008 the NAO undertook a retrospective study for all deaths in Sheffield during October 2007. 58% of these deaths occurred in hospital despite 40% having no medical reason to...

Applying the preferred priorities for care document in practice

Applying the preferred priorities for care document in practice

A welcome dilemma: setting priorities for the 12th EAPC Congress

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. 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, 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. 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! l IJPN

The Preferred Priorities for Care document in Motor Neurone Disease: Views of bereaved relatives and carers

Increasing emphasis is being placed on the need for advanced care planning (ACP) at the end of life. The Preferred Priorities for Care (PPC) document is a patient-held record promoted by the End of Life Care Strategy as an ACP tool to promote discussion and communication amongst patients, family and health care providers. However, little research exists into evaluating its effectiveness or exploring patient and carer views, particularly in non-malignant disease. Because the majority of patients with Motor Neurone Disease (MND) lose verbal communication, early discussion of patients’ wishes and preferences, a central aspect of ACP, is vital. This study examined MND patients’ bereaved relatives’ experiences of using the PPC document and their perceptions about its impact on end-of-life care using qualitative methods. Key findings adding to existing literature were that the PPC document was felt to have little impact on end-of-life care amongst this patient group and that there was a perceived lack of awareness of the document amongst health care professionals (HCPs), in particular hospital staff. This was felt to limit the effectiveness of the document. This has obvious implications for practice, looking at awareness amongst HCPs and ways to improve this situation, particularly in light of the current pressures to meet patient preferences at the end of life.

56 All Tooled Up: An Evaluation of End of Life Care Tools in Care Homes in North Lancashire

The End of Life Care Strategy (Department of Health, 2008) for England encourages the use of three tools — the Gold Standards Framework (GSF), Preferred Priorities for Care (PPC), Liverpool Care Pathway for the Dying Patient (LCP) — to improve the quality of end-of-life care in all care settings. While some evidence is available about the use of these …

The PINC programme: A report on the implementation of a programme to improve neurological palliative care at the end of life

This paper shows how the end of life care needs of people with neurological conditions were identified and addressed by the Sue Ryder Care Palliative Initiatives in Neurological Care (PINC) programme. It also reports on the implementation of end-of-life care tools — the gold standard framework in care homes, preferred priorities of care and the care of the dying pathway — to enable specialists in palliative care and expert providers of neurological care to come together to offer comprehensive neurological palliative care at the end of life.

Introduction to the Preferred Place (Priorities) of Care tool

This article provides, through discussion and case scenarios, an introduction to the development and implementation of the Preferred Place of Care (PPC) tool. This document has been developed to help facilitate patient/carer/healthcare professional discussions about choices at the end of life with regard to, for example, place of care and treatment alternatives. To reflect the nature of the wide range of choices available, not just place of care, the tool has been adapted and renamed Preferred Priorities for Care. A description is provided of the implementation of PPC in a wide range of care settings and the benefits derived for patients and their families. Conflicts of interest: the author is National Lead for Preferred Priorities for Care, NHS End of Life Care Programme