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Parallel Session: End-of-life, palliative care and advance directives

Abstracts and presentations

Assessment of the palliative care needs of patients with advanced dementia in Haringey

Karen Harrison Dening, Barnet Enfield and Hanringey Mental Health NHS Trust, United Kingdom,
Co-authors: Liz Sampson, Wendy Greenish

Background: The recently published Department of Health document Transforming Dementia Care – the National Dementia Strategy Consultation (2008) does not cover end of life care and the Department’s End of Life Care Strategy (2008) contains very few references to the care of patients with advanced dementia. These policy omissions are set against epidemiological evidence of a predicted significant increase in the incidence and prevalence of dementia in the next 30 years. By 2021, over 1 million people in the UK will have dementia; one in three people over the age of 60 will die whilst suffering from dementia. Marie Curie Cancer Care (MCCC) and commissioners in Haringey are working together in undertaking a baseline review, leading to recommendations to improve access to palliative care services for dementia patients.

Study Aims: The objectives are to:

  • Identify the major barriers for dementia patients in Haringey in accessing good quality end-of-life care
  • Suggest cost effective improvements based on review findings


  • Case note study for 10 patients who have recently died
  • Individual semi-structured interviews using field notes with carers of recently deceased dementia patients who lived in Haringey
  • Focus group meetings using field notes with key stakeholders in the patient care pathw ay e.g. District Nurses, social workers, homecare staff, residential care staff,

Admiral Nurses, Community Psychiatric Nurses, community matrons, voluntary sector, GPs, specialist palliative care teams, Old Age psychiatristS Emergent themes will be explored with attention to content and context of comments noted. These data will be used to describe experiences of care for patients with dementia in the last six months of life, the experiences of their carers and the attitudes and views on the mechanisms for and barriers to end-of-life care provision for this patient group.

The Beyond Barriers Project

Jenny Henderson, Alzheimer Scotland, United Kingdom,

Quality of life and the eventual dying process for people with dementia in the later stages of the disease are arguably neglected area of dementia care. The person may be faced with a poor quality of physical health, little or no verbal communication and a lack of capacity. This period may last for up to two years and is a challenge for not only the person with dementia but also for relatives and care staff. The Beyond Barriers Project attempted to address some of these serious care deficiencies. It was a two-year project that commenced in March 2006, funded by the Scottish Government and a partnership between Alzheimer Scotland, the Care Commission and Dementia Services Development Centre Stirling.

The aim of this innovative project was to develop a palliative care approach to the care of people in the later stages of dementia living in care homes in Scotland. This was achieved by creating approximately 100 dementia and palliative care champions and involved fifty care homes. An important part of the project was to give knowledge and skills to relatives (relative is used as an inclusive term meaning relatives, partners or friends) and for staff to gain a perspective of relatives needs. The project consisted of a three day education programme for both relatives and staff. Two senior members were invited from each home to take part and to identify at least one relative to also participate in the course. The staff had a further five learning support sessions.

The focus of the course placed communication at the heart of the sessionS It acknowledged the importance of person centred care and examined how a palliative care approach could enhance the quality of life at this stage of the illnesS An open approach was adopted that dying with dementia or of dementia will occur, which accepted that dementia is non curative and for those people who reach the later stages of the illness will be terminal.

Development of a hospice based education programme for health care professionals focusing on end-of-life care for people with dementia

Kay de Vries, University of Surrey, United Kingdom,

Dementia is now recognised as a progressive terminal illness and approximately 100,000 people die each year from dementia in the UK. Less than 2% of people in the UK with dementia are in hospice care and there is limited hospice involvement with dementia patients and their carers. Therefore, people with dementia suffer from inadequately managed symptoms during their terminal phase and a lack of support for carers around issues such as decision making and bereavement. This may be due to difficulties in recognising dementia as a terminal illness and the challenges of determining when a person with dementia is nearing the end-of-life. It is also due to the lack of knowledge and understanding of health care professionals surrounding the care needs of people with dementia at the end-of-life.

This project set out to develop and evaluate an education programme for 34 health care professionals working in hospice and community palliative care, focusing on end-of-life care for people with dementia. Several one-day workshops were conducted the objectives of which w ere to develop a more in-depth understanding of the care issues of advanced dementia patients including symptom management, communications strategies, ethical decision making and carer support. A know ledge and attitude based questionnaire w as conducted on pre and post learning for all hospice and community staff attendees. These were aimed at assessing changes in attitudes and confidence to manage the care of a person with dementia within the hospice and community team. The post learning questionnaire w as conducted approximately two months post attendance of the sessions and was combined with audio-taped focus group interviews aimed at assessment of retained learning through attendees reflecting on their practice. Findings are in the process of being analysed and will be presented.

Advance euthanasia directives in dementia: why are they not effective?

Marike E. de Boer, VU University Medical Centre, Netherlands,
Co-authors: Cees M.PM. Hertogh, Rose-Marie Dröes, Cees Jonker, Jan A. Eefsting

Background: Advance (euthanasia) directives were developed to provide a practical instrument for people with dementia and other incapable people to ensure their autonomy at the end of life. They enable people with dementia to manage their future by expressing their wishes with regard to care and medical treatment. Alzheimer Europe would like to promote the use of advance directives, but like the Council of Europe they also stress the importance of the ethical issues this raises which may be particularly complicated in cases of dementia. These issues become even more apparent in cases of a special type of advance directive involving requests for euthanasia, which is recognized in some countries, like the Netherlands. However, little is known on their use in daily practice. Accordingly a survey and additional interviews were conducted exploring how nursing home physicians and relatives of people with dementia deal with advance (euthanasia) directives, including the ethical problems they encounter.

Method: A questionnaire was completed by 434 nursing home physicians, which included both general questions about the use of advance directives and case-specific questions about their experiences in treating people with dementia who had an advance directive requesting euthanasia. Based upon the presented cases additional interviews were conducted with 12 physicians and 9 relatives.

Results: Preliminary results show that although physicians and relatives have positive attitudes towards advance directives in general, physicians are reluctant to perform euthanasia in cases of dementia. Both the questionnaires and the interviews provide insight into the specific (ethical) dilemma’s which the execution of these requests generate in practice.

Conclusion: Although advance directives in general play a part in the decision-making process with regard to end-of-life care in dementia, they do not play the same role as they have been legally adjudged. Dutch law allows more leeway than is being taken at the moment. Especially, advance directives requesting euthanasia in cases of dementia do not seem to achieve what they intend to achieve. Consequently our findings raise questions regarding the validity and effectiveness of advance directives of people with dementia requesting euthanasia. Further research is recommended to determine the role of advance directives as part of advance care planning in dementia.

Planning for future incapacity by continuing powers of attorney

Kees Blankman, Vrije Universiteit Amsterdam, Netherlands,

In some countries in Europe special legislation has been introduced regarding continuing powers of attorney. Such a power remains in force or enters into force in the event of future incapacity of the granter. Continuing powers of attorney, where available, are considered a preferred alternative to guardianship measures and representatives appointed by the court, especially by persons in an early stage of Alzheimer’s disease. Within the Council of Europe an initiative has started to prepare a concept-Recommendation regarding continuing powers of attorney and advance directives. The document is being studied at the moment and will hopefully be adopted by the Committee of Ministers in autumn 2009. The Recommendation is aimed at stimulating other member states to introduce legislation regarding continuing powers of attorney following the principles set out in the Recommendation. These principles refer to the content of the power and its entry into force, the appointment and the role of the attorney, possible means of control, etc. The presentation will give a short overview of relevant legislation in Europe and will focus on some of the underlying choices that were made by the group of experts that draw up the concept-document. The relevance of this new legal instrument for the citizens of Europe and the advantages of a self-appointed representative instead of a court-appointed one will be discussed.



Last Updated: Thursday 17 December 2009