We have already made and sustained many improvements in supporting people to live well with dementia in North East Lincolnshire, but there is still more to do.
The philosophy we are working to is that good end of life care in dementia requires good person-centred care; that is, care that responds to the needs of the person. We have been concentrating our plans for Living well with dementia to include supporting a person with dementia to die well, or as they would have wished. To be aware of the range of symptoms that a person with dementia may experience at the end of life and to support family carers and help them to understand what is happening at the end of life.
We understand that end of life care for people with dementia can be difficult to predict when a person is nearing death. They may present with signs that suggest they are very close to death, but in fact can show these signs for many months or even years. Or they may seem near to death and then improve and live for many months longer.
In addition, a person with dementia may die from another medical condition, for example cancer or heart disease. They may also have infections and minor illnesses on top of these ongoing conditions. Having these other conditions and illnesses may mean the person is cared for, or ultimately dies, in a hospital or a facility that does not specialise in dementia care.
For all these reasons, while knowledge about end of life care has increased greatly over the past 10 years, particularly in areas such as cancer care, many people with dementia still do not receive good quality end of life care.
Some people who have lost loved ones with dementia find that they grieve so much during the course of the illness that they have no strong feelings left when the person dies. Others experience a range of overwhelming reactions at different times.
In North East Lincolnshire we are working with carers, clinicians and other staff to make sure that they have information and support to recognise the end stages of dementia:
- We can have honest conversations and draw on earlier plans for a ‘good death’.
- Recognition and treatment of pain, nausea and other symptoms.
- The right care and support will be available at one’s preferred place of death, avoiding unnecessary admissions.
Work is going forward to assist people with dementia, especially during the late stages of the disease where it may be a struggle to communicate feelings and symptoms, or to understand and co-operate with, eg the usual methods for administration of medication and the incidence of physical symptoms and needs in the late stages of the condition means that the majority of people will be in a care home or in hospital. Support is being offered to support the choice of the person and family, and is entirely appropriate, eg when a care home has been the person’s home for some time.
However, unplanned admissions very near to end of life are not ideal, and can often be prevented, and more work needs to be done to prevent this occurring with support developed by community services who are now working on a shared understanding that the person is approaching end of life. There has been the opportunity to agree with the person (if possible) and family that the focus of care should be aimed around good symptom management and maintaining quality of life and dignity, not attempts at prolonging life at all costs.
Through the NEL End of Life Plans, care for people with dementia, in common with the rest of the dementia journey, is best achieved by health and social care services being accessible and taking the lead to improve support for people with dementia near to end of life. In practice, this includes encouragement to consider advance care planning at an early stage.
In North East Lincolnshire we have focused on developing a person-centred plan to support the end of life. This plan is called ‘What if – celebrating my life’ and has been designed to enable people with dementia, and their loved ones, to make advanced decisions regarding the person’ wishes in the distant future. It is important to make decisions early to ensure those providing care at a later date adhere to the person’s wishes.
This plan has three sections:
- All about me – who is supporting me with my plan?
- My final days – important things when planning my care
- Celebrating my life – my funeral arrangements
Getting end of life service and support for people with dementia is essential and we do not yet have this right. More work needs to be done to ensure that the planning and implementing for end of life care and support is more widely available. This tool has been specifically designed to ensure that planning for end of life is provided at an early stage when the person and their family and carers can complete it at the right time for them. It sets out how they would like to be remembered and practical issues such as what treatments that they would like to have and how they might wish to celebrate their life, eg funeral arrangements etc.This needs to be available and introduced at the right time, then the information can direct the way things are planned and organised at the end of a person’s life, ensuring that their wishes are carried out.
The tool is being embedded within all care settings residential care homes, nursing homes, as well as the person’s own home. This tool, along with many others tools and public information, has been developed by the North East Lincolnshire partnership approach to palliative and end of life care.