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White paper on palliative care in dementia – recommendations from the EAPC


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Palliative Medicine and the EAPC have published the white paper which:

  • defines palliative care in dementia
    in 11 domains, some of which are unique to dementia as a separate domain (for example, applicability of palliative care and prognostication)
  • defines optimal palliative care
    grouped by domain, in a set of 57 recommendations for practice, policy, and research
  • supports each recommendation with explanatory text
    based on evidence from
    - the literature – 265 references back up the explanations – and
    - consensus through a Delphi study with experts from across the globe

Further, the white paper:

  • Provides a model of dementia progression and suggested prioritising of care goals
  • Provides a research agenda with:
    - decision making and treating symptoms prioritised by the experts
    - recommendation of comparative research across Europe’s rich variety of care models, with particular attention to home care and hospital settings
    - recommendation of further research into how to give shape to palliative care in dementia across dementia stages

Authors

Anneke L. Francke
Coordinator of the nursing
research program at NIVEL, Utrecht
Professor in Nursing in the Last Phase of Life,
VU University Medical Center,
EMGO Institute for Health and Care Research,
Dept. of Public and Occupational Health,
Amsterdam, the Netherlands
Phil Larkin
Professor of Clinical Nursing [Palliative Care]
Head of Discipline for Children's Nursing
Director of Clinical Academic Partnership
School of Nursing, Midwifery and Health Systems
& Our Lady's Hospice and Care Services
University College Dublin

Raymond TCM Koopmans
Department of Primary and Community Care,
Centre for Family Medicine,
Geriatric Care and Public Health,
Radboud University Nijmegen Medical Centre,
Nijmegen, the Netherlands

Pam Firth
Independent Consultant in Psychosocial Palliative Care,
Hon. Lecturer in Health Research
International Observatory on End of Life Care
School of Health and Medicine
Lancaster University, Lancaster UK
Julian C Hughes
Northumbria Healthcare
NHS Foundation Trust and Institute for Ageing and Health,
Newcastle University,
Newcastle upon Tyne, UK
Marike E. de Boer
VU University Medical Center,
EMGO Institute for Health  and Care Research,
Department of General Practice & Elderly Care Medicine, 
Amsterdam, the Netherlands.

Saskia Jünger
Health Scientist & Psychologist
Department of Palliative Medicine,
University Hospital Bonn, Germany

Ladislav Volicer
School of Aging Studies,
University of South Florida,
Tampa, FL, USA
 

Cees Hertogh
EMGO Institute for Health and Care Research,
Department of General Practice & Elderly Care Medicine
VU University Medical Center
Amsterdam, The Netherlands
Dianne Gove
Alzheimer Europe, Luxembourg

 

Target group

Professionals providing palliative care to dementia patients, whether occasionally or on a more regular basis, and stakeholders and decision makers involved in policy making around dementia care and geriatrics, including policy for development of research and of practice.

Background

Clinicians and researchers within the palliative care community have traditionally focussed on care for cancer patients. However, there are important differences in terms of disease trajectory, communicating with patient and family, and care provision that distinguish end of life with dementia from life-limiting disease with a better defined disease trajectory. For example, prognostication is more difficult than in cancer patients. Patients may survive to the last phase of dementia, but more patients die earlier from, e.g., pneumonia, intake problems, or comorbid disease. When to start palliative care is an important issue in dementia.

Care for families is very important, not only because of dealing with pre-grief or caregiver burden, but also to support their roles of proxy decision makers in more advanced dementia. Because of progressive cognitive problems, early advance care planning at a stage where this is still possible provides the opportunity to involve the patient, but this requires a context of acceptance and willingness to plan ahead. Because its application is not routine, several countries have initiated programs to promote advance care planning in populations that include dementia patients, such as for nursing home residents. Further, physical and behavioural problems in dementia are distinct, and elderly dementia patients frequently suffer from comorbidities which have to be considered in treatment decisions. Dementia patients are at risk of under treatment of symptoms because they may not report problems verbally and staff is not trained in the assessment, and over treatment with burdensome curative interventions including hospitalization and feeding tubes. Nursing and spiritual end-of-life care in dementia patients is largely undeveloped. Ethics and dignity are major issues in palliative care with dementia, and these concepts are relevant to the different palliative care domains. Patients with dementia often die in institutional settings. Most research in palliative care for dementia patients has been performed in nursing homes also because of the practicality of the infrastructure, and palliative care in long-term care is focus of diverse research and policy initiatives. However, palliative care for dementia patients at home and in hospitals deserves attention, especially when palliative care is initiated early.

In young patients with dementia, type of dementia, symptoms, psychological, and social problems (e.g., care for young children) differ from elderly patients with dementia. We will address this group briefly, but otherwise focus on elderly patients, whom constitute the large majority of dementia patients.

So far, two-thirds of publications on end of life in dementia originates from the US. Treatment approaches vary widely cross-nationally, and in view of highly variable European settings, research including comparative studies in a diversity of European countries is desirable. This will help assess best practice elements of palliative care in dementia. Based on the distinct features of end of life with dementia touched upon above, future directions for policy, practice, and research into palliative care in dementia in Europe will be highlighted in the white paper.

Scope

The white paper argues that the palliative care approach is relevant and beneficial also for dementia patients. We define palliative care on a theoretical and more practical level. The paper addresses the needs of dementia patients at the end of life and how these differ from dying from other diseases requiring palliative care, and how palliative care can serve the needs of dementia patients adequately. A core piece of the paper is a set of recommendations on palliative care in dementia to provide guidance on clinical care. Further, the white paper describes important research goals and formulates a research agenda for palliative care in dementia. Identifying where care needs improvement is the basis for future directions for policy, research, and practice in palliative care in dementia.

The elderly patient with dementia is central to this work, but we briefly describe differences with care for younger patients with dementia . We address the relevant domains in palliative care, including physical, psychological and spiritual domains.

Methods

The white paper is developed in three stages, with input from a limited group of experts (1), the boards of directors of the EAPC (2), and a broader group of experts from a variety of disciplines, from relevant organizations, with relevant expertise, and from diverse European countries in a Delphi consensus procedure (3).

This remit, an outline of the white paper, and subsequent drafts are prepared by a small writing committee with Dr Jenny van der Steen and prof. Cees Hertogh as lead authors, and prof. Lukas Radbruch and Marike de Boer as co-authors. To draft a first version of the set of recommendations as a core piece of the paper (phase 1), we have consulted with a few experts who have published extensively in this field and also have clinical experience in providing palliative care for dementia patients. The content is based on research findings, guidelines and consensus statements such as the guidelines issued by Alzheimer Europe, along with clinical experience of the experts. The remit, as well as the first draft of the set of recommendations (phase 2) has been submitted to the boards of directors of the EAPC to solicit for their input regarding contents and direction.

Subsequently (phase 3), a revised draft of the set of recommentations is circulated to a broader audience of experts and representatives of relevant organizations, including stakeholders and decision makers in a Delphi consensus procedure. We include experts in cancer and other palliative care, and in dementia care, as part of the target groups. We aim at consensus on the contents and relevance to the target groups. We ask for general feedback as well as for the level of agreement /disagreement with the recommendations, according to previous work in the white series paper (Educational remit) and formats in use for evaluation of decision aids.

The set of recommendations is revised with the feedback from these experts if needed and we will analyse and report on the process of achieving consensus, or areas where consensus is not achieved. Using this information a final set of recommendations is prepared  to be included in the white paper. This final version will be submitted to the board of directors of EAPC for adoption as an official position paper of the EAPC.

Milestones

Time Step

June 2010

Developped a draft remit
July - August 2010 Discussed the draft remit in writing committee and recruited experts for first phase

September 2010

Submitted draft remit to EAPC board of directors
October 2010 - May 2011 Phase 1: First outline of a set of recommendations as the core piece of the white paper with writing committee in consultation with experts with expertise in research and clinical practice

May 2011

Phase 1: Meeting of the experts in Lisbon at the EAPC Congress, and in the Hague at the IPA Congress

June - December 2011

Developped draft set of recommendations

January- February 2012

Phase 2: Submitted first draft to EAPC board and revised it
Spring 2012 Phase 3: Circulate second, revised, draft to the broader group of experts in a Delphi consensus procedure.
Summer- Fall 2012 Submit to EAPC board of directors and finalize set of recommendations; finalizing of the white paper;
Late 2012 / 2013 Publication and disseminatin of the white paper

 

Leading Authors

Jenny van der Steen
EMGO Institute for Health and Care Research,
Department of General Practice & Elderly Care Medicine
VU University Medical Center,
Amsterdam, The Netherlands

click here to contact by email

Lukas Radbruch
Malteser Krankenhaus Bonn 
Zentrum für Palliativmedizin, Germany

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