Where Do People with Dementia End Their Lives?
6 September 2018 | Joanne Nicholls, Queen's Nurse
The rate of people dying with a mention of dementia has increased significantly in recent years, accounting for 6.6% of all deaths in 2001 and 15.8% of all deaths in 2014, for people aged 20 and above.
The place of death profile for people with dementia is markedly different from the general population. Literature suggests that the majority of deaths with a mention of dementia occur in care homes (58%), a third of deaths occur in hospital and less than a tenth at home. This is in contrast to the general population over the age of 65 years where half of the deaths are recorded in hospital, a quarter in care homes and one fifth in their own homes.
A possible reason for this lack of parity is thought to be that dementia is not routinely identified as a terminal illness during end of life care. Dementia has a varied disease trajectory and an individual is likely to have several episodes of life-threatening illness, prior to the terminal episode. As a result, this can make the terminal phase of dementia challenging to identify.
As a society, the boundaries between being ill and dying have become obscured and the naturalness and inevitability of death has become blurred. Doctors can be overoptimistic in estimating the prognosis of people with dementia. They can view death as a failure, making a ‘good death’ a difficult concept to accept, especially for people with dementia. This in itself can be confusing for family members, as they may then adopt unrealistic expectations.
Too Many Hospital Admissions?
Questions arise around the high numbers of deaths in hospitals for people with dementia. This may be a result of death becoming medicalised and beliefs of the current generation, who feel that dying at home is no longer the norm and are unaware of the choices and services that are available at the end of life. Death in a hospital environment can be challenging, and these challenges are intensified for people with dementia. The environment may be impersonal and unfamiliar, with little space for the patient and family members.
Many patients with dementia in an acute hospital may benefit from palliative care in an alternative environment to make them more comfortable, promote dignity and improve quality of life at the end of their life, whilst providing privacy for family members. I believe – and research supports this – that palliative care in dementia is often initiated too late in the disease trajectory and that this reduces choice, in the absence of advanced care planning. This consequently denies many people with dementia in hospitals the benefit of palliative care in a more suitable environment.
In care homes, too often patients nearing the end of life are admitted to hospital inappropriately. This can be as a result of many factors. Clinical experience reflects that many admissions from care homes are as a result of a 999 emergency calls. Too often, when ambulance crews are dispatched to a nursing home, the resident’s wishes regarding end of life care are not documented and care home staff have differing opinions about the right course of action, due to society’s expectations to preserve life.
This can leave emergency services little choice but to take people to hospital. This may often be inappropriate yet without clear and documented instructions offering an alternative will continue to be the norm. Care home residents with dementia and their families need to be supported to turn their documented preferences into actions, if they wish to set limits on treatment, avoid hospitalisation and receive potentially sub-optimal end of life care.
Advanced Care Planning
Dementia is a progressive condition, but it is not easy to determine when end of life is approaching. To prevent a death in hospital that deprives individuals and their families of the dignity it deserves, advanced care planning needs to take higher importance for all health and social care organisations. There appears to be little research around the provision of specialist palliative care for people with dementia in care homes or in general hospitals. Organisations need to embrace this deficit in knowledge and clinical care to improve the experience of people with dementia, as they approach the end of life.
Good communication is the key to ensuring that advanced care planning is completed. Getting over the stigma of talking about death needs to become part of training for care home and hospital staff. Whilst some care homes do address advanced care planning, it requires a driving force to make this standard practice. Advanced care planning should be considered throughout a patient’s journey and all staff working with people with dementia, regardless of the stage of their progression, should be confident in addressing this issue.
There is evidence that people with dementia are able to talk about death and dying and make decisions about their end of life preferences (Alzheimer’s Society (2012)). As nurses, we need to ensure that we support people to achieve their wishes and advocate for them, if family and professionals have differing views.
Joanne Nicholls QN
Rotherham, Doncaster and South Humber NHS Foundation Trust
Alzheimer’s Society (2012) My Life until the end: Dying well with dementia https://www.alzheimers.org.uk/
Office of National Statistics (2015) https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/provisionalanalysisofdeathregistrations/2015
Public Health England (2016) Data Analysis report – Dying with Dementia