Palliative and end of life care
The primary goal of the team is to enable improved palliative care for people living with advanced dementia, with mental and physical health needs in care homes/supported living or their own home.
The resource will be focussed on ensuring the person remains at home (wherever home is) and avoiding unnecessary acute care admission. The team will also support discharges from acute hospital beds and pathway 3. We assess, plan care for and consult on people with advanced dementia and comorbid conditions which make care and treatment complex.
We use an evidence based approach that supports palliative care for this group of patients:
- People with advanced dementia approaching the end of their life (acknowledge that unlike other terminal health conditions it is very hard to predict probable time to death)
- People with dementia and other terminal conditions
- People with dementia and comorbid health conditions
- People with dementia, frailty and delirium
- People with dementia that require support to advance care plan in the early stages of their condition
Palliative care is for anyone diagnosed with a life-limiting condition, including dementia. It focuses on making a person’s quality of life as good as possible by relieving discomfort or distress.
A person can receive palliative care for any length of time, from a few days to several years.
Palliative care may be offered alongside other medical care, especially in the earlier stages of dementia. Any palliative care in place will continue alongside end-of-life care.
End of life care aims to support a person in the later stages of a life-limiting condition to live as well as possible until they die.
It aims to enable the person to die in the way that they would have wanted, giving priority to the things that matter most to them. It also supports family and carers during the final stages, as well as after the person has died.
End of life care can last for just a few days or weeks, but for many people it may continue for months or even years.
End of life care should support the person to live as well as possible until they die, especially:
- their physical needs, including pain relief and management of other symptoms
- their emotional needs, including managing distress
- their relationships with others, including who they would and wouldn’t like to be with them
- their environmental needs, such as their surroundings and community
- their cultural, spiritual, or religious beliefs and practices.
Everyone supporting the person (including care professionals) should use their knowledge of the person, and any advance care planning the person has put in place.
For many people, ‘dying well’ means:
- being treated with compassion and respect
- being kept clean, comfortable, and free from distressing symptoms
- being in a familiar place surrounded by those close to them.
Doing small things for the person can help a lot – for example talking to them, brushing their hair, or holding their hand. Meaningful connections like this can help you be close to the person and give them the emotional support they need.
End of life care for a person with dementia can involve a number of different professionals working together as a team. This can include:
- the GP
- community nurses
- social workers
- care home or hospital staff.
Specialist palliative care professionals may also provide input for people with complex needs.
Offer consultancy and advice, assessment and care planning for people with advanced dementia, palliative and/or end of life care needs including areas such as;
- Identify and manage symptoms associated with advanced dementia and end of life, i.e. pain, terminal agitation, nausea and vomiting, secretions, breathlessness
- Identify possible symptoms when a person is not able to clearly state what their symptoms are ie pain
- Palliative care needs holistic assessment
- End of life care planning
- Advance Care Planning
- Support with physical, emotional and psychological issues
- Advice/signposting on social/ financial concerns
- Advice and support coming to terms with the progression of dementia and Alzheimer’s and likely deterioration
- Support and management of co-morbid conditions
- Delirium
- Polypharmacy and medication rationalisation (where appropriate)
- Offer education and signpost to further educational resources
Who should refer:
- Self-referral including family and carers
- Community teams – mental health teams, district nursing, dementia rapid response, Reablement teams, social care, ANPs
- GP/primary care
- Care home
- Hospital ward/discharge teams/A&E for home follow up
Contact the Dementia Palliative Care Team
Telephone referrals should now be made via the Community Access Point call 01332 564900 and request the Dementia Palliative Care Team.
For direct professional contact to the team:
- Duty mobile: 07917 515773
- Email: dchst.dementiapalliativecareteam@nhs.net
- Hours of operation: 09.00 – 17.00 Monday to Friday
