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End of life care

1. Summary 

Dementia is a progressive condition for which there is currently no cure, so 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 which may complicate the care of a different condition.  Diminishing capacity means that it is important for the person with dementia to consider the type of care they would want and where they would want to be at the end of their life as early as possible.  Problems with capacity and communication can also contribute to undignified treatment and the under treatment of pain in people with dementia at the end of their lives.  Significant, co-ordained 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. 

2. Background

There are three ways in which people with dementia die (Cox and Cook, 2002).

  • People may die from the complications arising from end-stage dementia.
  • People may be in the early stages of dementia and die from another illness (e.g cancer). 
  • People may die with a mix of problems. Dementia may not be the main cause of death but it interacts with other conditions and can complicate and worsen them.

Of the additional problems that people with dementia have near the end of life, research has shown that people with dementia can often have trouble eating and contract pneumonia along with fevers and fits (Mitchell et al, 2009). Many people with dementia may also have long-standing medical conditions which will complicate their care, such as diabetes, arthritis, heart problems and trouble breathing.

All of the 800,000 people with dementia in the UK will face additional complications at the end of their lives, regardless of which disease causes their death. The dementia itself causes problems in areas that are key to planning for and ensuring a good death. These include:

  • diminishing mental capacity
  • difficulty with communication, which is particularly problematic when the person is communicating their hunger, thirst, discomfort, pain and other needs 
  • uncertainty in prognosis.

Many of the systems for end of life care are designed around people with cancer, rather than people with dementia. People with dementia may not be referred for specialist end of life care (such as at a hospice), and specialists in end of life care are more used to dealing with conditions with a steep period of decline, such as cancer, rather than the more uncertain prognosis of dementia.

3. A 'good death'

The End of life care strategy (Department of Health, 2008) suggests 'although every individual may have a different idea about what would, for them, constitute a "good death", for many this would involve:

  • being treated as an individual, with dignity and respect
  • being without pain and other symptoms 
  • being in familiar surroundings 
  • being in the company of close family and/or friends'.

Alzheimer's Society believes this is just as true for people with dementia as it is for people who have other health conditions.

4. Public awareness and planning

Diminishing capacity becomes a particular problem in end of life care for people with dementia.  In cases where a person still has capacity, they would be involved in the decision to shift from treating the condition to palliative care, along with decisions such as where they would like to die and what treatments they wish to receive. However, where capacity to make these decisions is lost, as is often the case for people with dementia, this is no longer possible and decisions will have to be made on their behalf.

The lack of public understanding of dementia, and the 'taboo' about discussing death and dying combine to create a double stigma around dementia and death. This means that it is rarely thought about and conversations that could achieve positive outcomes for personal choice at the end of life do not take place.  Planning care, even if it is an unstructured conversation about the person's wishes, makes decision making easier at the end of life.  Under the Mental Capacity Act, in England and Wales there are formal tools in place for someone to state wishes about who they would like to make decisions on their behalf, or the treatments they would not like to have.  However, uptake of these tools is low (Alzheimer's Society 2012).  In Northern Ireland, such tools do not have a formal basis in law as there is not currently any capacity legislation.

The clinical value of advance planning for end of life care is also clear. A recent study (Baker et al, 2012) found that advance care plans drawn up in primary care could help reduce unplanned hospital admissions by 52% as more was understood about the person's wishes, which means that where they expressed a wish not to be hospitalised it was possible for this to be followed.  However, professionals may be unwilling to discuss end of life planning with people with dementia (Alzheimer's Society 2012). 

There is a broad lack of engagement with dementia as a terminal condition. While it is possible to live, and in some cases live well, for many years with dementia, it is a progressive disease and one of the leading causes of death for both men and women (ONS 2011). These factors make it important for Alzheimer's Society to engage with and promote conversations about death and dying widely, using dementia as an example of why it is important.

5. Dignity and pain

Too often, people with dementia are ending their lives in pain and without dignity.  In research for My life until the end: Dying well with dementia (Alzheimer's Society 2012) Alzheimer's Society heard reports of some people with dementia being left in pain, without something to drink or unwashed for periods of time.  This echoes the findings of the Ombudsman (Health Service Ombudsman, 2011), the Commission on Improving Dignity in Care (Commission on Dignity in Care for Older People, 2012) and the Royal College of Psychiatrist's hospital audit (Royal College of Psychiatrists, 2011).

Alzheimer's Society believes that the undignified treatment that many people with dementia receive is shocking and inexcusable. More should be done to prevent the significant harm and breaches of human rights which some people with dementia experience at the end of their lives. More should also be done to raise the basic standards of care that people with dementia receive. A key factor of the later stages of the dementia is a declining ability to communicate. Greater training and greater recognition of the value of health and care professionals treating the person with dementia as an individual, often referred to as relationship-centred and person-centred care, would improve the level of dignity experienced by people with dementia.

6. Withholding and withdrawing treatment

Withholding or withdrawing treatment is one of the most ethically complex and emotionally challenging aspects of end of life care. It is made particularly challenging in dementia as the person is likely to lack the ability to communicate their basic needs when this is being considered. It is also likely that the person may have lacked the capacity to make decisions for some time, and they may not have left instructions about their wishes. It is also difficult for doctors to predict the prognosis in dementia, which can cause particular problems as many palliative care services are designed for short interventions.

The GMC guidance states that artificial nutrition and hydration are medical treatments and that decisions about whether they should be used should be made in the same way as for other treatments, such as CPR. This includes whether the treatment is in the patient's overall best interest (GMC, 2010). 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. Losing the ability to swallow can be part of the dying process in some cases and artificial nutrition and hydration in these cases may not be appropriate.  However, it is important that there is honest and open discussion between medical professionals and the person with dementia's family, friends and carers when a decision is being made to withhold or withdraw treatment.  It is essential that the quality of life and comfort of the person with dementia is paramount. There should be specialist palliative care, including pain relief and other palliative treatments available to the person at all times. It can also be helpful to provide comfort care, including human touch and moistening of the lips if nutrition and hydration is withdrawn.  It is also essential that there is appropriate emotional support for families at this difficult time.

7. Emotional and spiritual concerns

Research has suggested that the emotional and spiritual needs of people with dementia are disproportionately neglected (Sampson et al, 2006). While cognition declines and the person with dementia may become withdrawn, it is still possible for them to be distressed or upset. Depression can be difficult to recognise in advanced dementia.   An holistic approach to care demands that there is an awareness of each person's wishes and needs as an individual. It is important that these needs are understood and met where appropriate. Making sure the person is comfortable and minimising distress is an important part of care. It is also important to consider whether the person would like spiritual support.

8. Place of death and co-ordination of care

There is a drive within end of life policy to support people to be able to die in the place that they would choose (Department of Health, 2008). Often this is their own home, or the care home in which they live, although many people with dementia still die in hospital.  Alzheimer's Society supports this, and encourages greater planning and co-ordination of care to make it a reality.

The end of life care of people with dementia will involve a range of professionals across social services and NHS.  Many common problems in dementia at end of life stem from a lack of co-ordination in care. If implemented, the Palliative Care Funding review (Hughes-Hallet et al 2011) will create a tariff for palliative care needs - an amount of money that could be accessed by commissioners for patients' palliative needs in addition to the funding to meet the needs for their condition. This should provide adequate resource to allow the palliative care needs of people with dementia to be met, regardless of the setting of their care.  The Palliative Care Funding review suggests that people at the end of their lives and their carers should receive a holistic needs assessment and be supported by a care co-ordinator. Implementation of this proposal would greatly benefit people with dementia.

9. The Liverpool Care Pathway

In 2013, the Neuberger review into the Liverpool Care Pathway published a report called More Care, Less Pathway. Alzheimer's Society supports many of the recommendations in the report, but still supports the good practice from the Liverpool Care Pathway. The Liverpool Care Pathway is being phased out and will no longer exist from July 2014.

10. The Society campaigns for:

  • Greater public awareness and support for people with dementia to plan for their future care using legal provisions and in a more informal way
  • All people with dementia should be able to come to the end their lives with dignity and free from pain, with staff training and other systems geared to support this even when communication has diminished
  • Significant, co-ordinated and holistic support for the person with dementia and their carers, regardless of the setting which they are in, which includes provision for emotional and spiritual concern.

11. References

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.

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.

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.

Last updated: February 2014 by Laura Cook

The later stages of dementia

Alzheimer's Society factsheet about the later stages of dementia.

The National Council for Palliative Care

The National Council for Palliative Care is the umbrella organisation for all those providing, commissioning and using palliative care.

Contact the Alzheimer's Society policy team

Contact the Alzheimer's Society policy team

Email:
ppa@alzheimers.org.uk

       

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