Alzheimer's Society's view on end of life care
What we think about end of life care and how it relates to the needs of people affected by dementia.
Dementia is a progressive condition for which there is currently no cure. All people who develop dementia will have dementia at the end of their lives, either as the condition they die from or as a factor that may complicate the care of a different condition. Diminishing capacity means that it is important for the person with dementia to plan for the end of their life at an early stage.
Problems with capacity and communication can also contribute to undignified treatment and the undertreatment of pain in people with dementia at the end of their lives. Significant, coordinated and holistic support is needed to ensure that all people with dementia end their lives with dignity, free from pain and in the place of their choosing.
What Alzheimer's Society is calling for
- Ensuring a good death for people with dementia. The Department of Health (2008) suggests that, for many, a good death would involve being treated as an individual, with dignity and respect, without pain and other symptoms, in familiar surroundings and in the company of close family and friends. Too often, however, people with dementia receive undignified treatment and are ending their lives in pain (Alzheimer's Society 2012, Health Service Ombudsman, 2011, Commission on Dignity in Care for Older People, 2012, Royal College of Psychiatrists 2011) and partnership between dementia care and palliative care are undeveloped (NCPC, 2009). People with dementia may not be referred for specialist end of life care or receive inappropriate treatment. Alzheimer's Society believes that people with dementia have the same right to a good death as people with other health conditions.
- Advance planning for end of life care. People with dementia should be involved in decisions about end of life care wherever possible. However, as dementia advances, in many cases capacity is lost and decisions need to be made on behalf of the person with dementia. Advanced planning for end of life care is vital. At present, taboos about discussing death and poor understanding of dementia mean that these conversations do not take place between people with dementia, families, friends and health and social care professionals. People with dementia should be supported to use their rights, under the Mental Capacity Act in England and Wales, to identify whom they want to make decisions and any treatments they would not want. In Northern Ireland, the Assembly is developing mental capacity legislation.
- Improved training for health and social care professionals. Declining ability to communicate characterises the later stages of dementia. Health and social care professionals should be trained to provide high-quality, person-centred care to improve dignity and quality of life even when communication has diminished. People working with someone at the end of their life also need to be able to communicate sensitively themselves, both to families and to the person with dementia, following best practice set out by the Social Care Institute for Excellence (www.scie.org.uk).
- Focus on quality of life, rather than length of life, in the final stages of dementia. Withholding or withdrawing treatment is especially ethically complex and emotionally challenging for a person with dementia as they may lack the ability to communicate, the capacity to make decisions and may not have prepared instructions about their wishes. The NICE-SCIE Guideline on dementia states that artificial feeding and hydration should not commence if disinclination to eat or inability to swallow is considered to be part of the progression of the disease and will not change in future (NICE-SCIE, 2007). Alzheimer's Society believes that when someone with dementia is close to dying the main issue of concern should be quality of life and quality of death, not length of life. However, it is important that there is an honest and open discussion between medical professionals and family, friends and carers about any decisions to withhold or withdraw treatment. The quality of life and comfort of the person with dementia is paramount. Specialist palliative and comfort care should be available to the person at all times and appropriate emotional support should be available for families.
- Improved emotional and spiritual support. Research has suggested that the emotional and spiritual needs of people with dementia are disproportionately neglected (Sampson et al, 2006). It is still possible for a person with advanced dementia to be depressed, distressed or upset. People with dementia must receive holistic care that recognises and responds to individual wishes and needs.
- Improved planning and co-ordination of care. Only half of people who express a preference to die at home actually die at home (ONS, 2014). This places pressure on the NHS, causing 52 per cent of unplanned hospital admissions, and adversely impacts on the quality of care received by a person with dementia (ONS, 2014). Alzheimer's Society supports the government’s goal of ensuring that more people die in a place of their choosing (Department of Health, 2008). To achieve this, the Society calls for the implementation of the Palliative Care Funding Review (Hughes-Hallet et al 2011). This would provide commissioners with funding for palliative care, regardless of setting, in-line with a person with dementia's wishes.
- Implement the recommendations of the Leadership Alliance for the Care of Dying People. In July 2014, new best practice guidance from the LACDP replaced the Liverpool Care Pathway. Alzheimer's Society supports the LACDP's recommendations that, in the final weeks and days of life, the dying person should be the focus of care. However, Alzheimer's Society is concerned that the guidance does not have statutory force.
- Appropriate safeguards and support at end of life. Alzheimer's Society is not calling for a change in the law on assisted dying or euthanasia, although we monitor changes in legislation to ensure that people with dementia are appropriately safeguarded. We believe that people with dementia are entitled to good end of life care. This includes use of advance care planning and advance decisions to refuse treatment so that people with dementia can receive the treatment and care that responds to individual needs and wishes.
References and further information
- Alzheimer's Society (2012) My life until the end: dying well with dementia
- Baker et al, (2012) Anticipatory care planning and integration: A primary care pilot study aimed at reducing unplanned hospitalisation. British Journal of General Practice, 62(595):e113-20.
- Commission on Dignity in Care for Older People (2012) Delivering dignity: Securing dignity in care for older people in hospitals and care homes. A report for consultation. Commission on Dignity in Care for Older People, London.
- Cox and Cook, (2002) Caring for people with dementia at the end of life in Hockley J, Clark D, eds. Palliative care for older people in care homes. Open University Press, Buckingham: 86-103.
- Department of Health, (2008) End of life care strategy.
- Neuberger (2013), More Care, Less Pathway: Independent review of the Liverpool Care Pathway.
- General Medical Council (2010). Treatment and care towards the end of life: Good practice in decision making. General Medical Council, London.
- Health Service Ombudsman (2011). Care and compassion? Report of the Health Service Ombudsman on ten investigations into NHS care of older people. The Stationery Office, London.
- Hughes-Hallet, T, Craft, A, and Davies, C (2011). Funding the right care and support for everyone: Creating a fair and transparent funding system: The final report of the Palliative Care Funding review.
- Mitchell et al (2009). The clinical course of advanced dementia. New England Journal of Medicine, 361(16):1529-1588.
- NCPC (2009), The Power of Partnership: palliative care in dementia.
- NICE-SCIE (2007) Dementia clinical guideline: supporting people with dementia and their carers in health and social care.
- Office of National Statistics (ONS) (2011). Deaths registered in England and Wales in 2010, by cause.
- Office of National Statistics (ONS) (2014). National Survey of Bereaved People (VOICES), 2013.
- Royal College of Psychiatrists (2011). National audit of dementia.
- Sampson, E, Gould, V, Lee, D, and Blanchard, M (2006). Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age and Ageing, 35(2):187-9.