A guide to end of life services
As you won't be the only person involved in the care of someone living with a terminal illness, collaborative, coordinated health and social care is essential. This guide introduces the wide range of services that are likely to be available in your area for people affected by a terminal illness.
Knowing what services are available, learning about what these look like in your local area and ensuring that these are delivered in line with a person’s current medical condition, care plan and preferences are key to providing high-quality palliative and end of life care.
Not every service will be available or operate in the same way in every area of the UK.
There is also information about how these services can communicate effectively with each other, which is essential for consistent, effective end of life care.
You can search for local services using our online directory. You can also contact our Support Line on 0800 090 2309.
About the services
GP and primary healthcare team
When someone is ill and living at home, the primary care team is responsible for their care.
When someone is receiving palliative and end of life care at home, it will be led by their GP. They can :
- tell the patient where to find information about their condition and any support services available
- prescribe medications and other treatments to manage pain and symptoms, possibly including a Just In Case box (kept in the patient’s home with medicines they might need in a crisis)
- liaise with the district nurse regarding care at home
- arrange for hospice staff to contact the patient and explain how they can help
- help the patient and their family manage physical needs
- help with arrangements for the patient’s social, psychological and spiritual needs at the end of life
- make sure that the patient has access to the medical and nursing care they need, 24 hours a day, seven days a week ̶ this means checking there’s an arrangement in place for any needs the patient might have at night, at the weekend and on holidays
The practice nurse is based at the GP surgery. The patient may have seen them for health checks such as blood pressure checks and respiratory clinics. They are not usually involved in palliative and end of life care.
District nurses and community nurses
A district nurse holds a qualification in community nursing practice and is usually the leader of a team of community nurses and healthcare assistants. They carry a caseload of patients and are affiliated to GPs they work closely with.
A community nurse is a qualified nurse who works in the community under the management of a district nurse.
District and community nurses organise and coordinate home care and can arrange for services to be provided if a person is being cared for at home. These vary from area to area but can include Marie Curie Nurses, Macmillan nurses, social services, and sitters who can visit regularly and deliver prepared meals. District nurses and community nurses can:
- coordinate the patient’s care
- link to all other services
- oversee overall medical care
- manage pain and symptom relief
- advise on drinking and fluid
- advise on eating and nutrition
- prescribe medications
- help with advance care planning
- help the patient stay comfortable
- order equipment
They can also give the person information about local services such as:
- support groups
- local hospices
- information and support centres
- organisations that offer grants
- complementary therapy practitioners
- interpreting services
- other relevant services and organisations
District and community nurses may also carry out a formal assessment (a continuing healthcare assessment, or CHC) of a person’s nursing and related needs, in consultation with them and their family. This is to find out how much support will be needed to keep caring for the person at home.
Healthcare assistants (HCAs)
Healthcare assistants work in the home, in care homes, in hospices and in hospitals. In the community, they are part of the district nursing team and managed by a qualified district nurse. A healthcare assistant isn’t a registered nurse, but they have been trained to help patients with things such as:
- keeping clean
- eating and drinking
- using the toilet
- incontinence care
- taking blood
They can also assist with medications, if they have the right training. Community HCAs work within the district nursing team.
Specialist palliative care team
A specialist palliative care team provides multidisciplinary medical, nursing and psychological care and treatment to people who are living with, or affected by, serious or terminal illnesses. Their aim is to relieve pain and any other symptoms causing discomfort, and improve people’s quality of life.
If a person is referred to a specialist palliative care team, they will assess their needs and those of their family. They will then provide the best possible care and support in the person’s home, hospital or care home – wherever they’ve chosen to be cared for.
The core members of a specialist palliative care team usually include:
- palliative medicine consultants
- occupational therapists
- social workers
- palliative clinical nurse specialists
An extended specialist palliative care team could also include:
- lymphoedema specialists
- chaplains or spiritual care professionals
Palliative care teams can be based in the community (ask the GP or district nurse), in a local hospital or in a hospice.
Palliative medicine consultant
A palliative medicine consultantis a highly specialised doctor who has done extensive training in palliative care after initial training as a generalist doctor. They are available to provide advice and support to patients and their families, as well as the other professionals involved in care provision. This will include GPs, district nurses and specialist nurses. They are generally based in a hospice or hospital.
Clinical nurse specialist (palliative specialist nurse)
Clinical nurse specialists work in all settings – in the home, in a hospital or in a hospice. They work in teams, usually supported by a specialist palliative care doctor. They have specialist skills and will coordinate much of the care, working closely with the GP and district nurse.
Clinical nurse specialists assess symptoms, advise on appropriate treatments and offer support to the family. They are generally the nurses most likely to be present towards the end of the patient’s life. These nurses usually provide training and support for district and community nurses.
They can help the patient by:
- managing symptoms, such as pain
- supporting their emotional and spiritual needs
- promoting independence and choice
- helping with eating and drinking
- providing advice and care in emergencies
- caring for the family
- signposting to creative therapy services
- signposting to complementary therapies services
- referring to social care services
- signposting to befriending services
- signposting to bereavement care services
- helping with advance care planning
Specialist social workers
Specialist social workers are able to provide various types of support at the end of someone’s life to help them plan ahead. This can include:
- advice about benefits
- emotional support for children
This is called pre-bereavement support. Specialist social workers are also usually available to support the family for a period after their loved one has died.
Some physiotherapists and occupational therapists specialise in palliative and end of life care. They advise on the same areas as other therapists, but with a focus on palliative and end of life care and the differences this makes to daily living.
Hospices are smaller than hospitals and have a different atmosphere, making them feel more like someone’s home. They are supported by charitable funding and provide free, tailored care that is suited to an individual’s needs. They are usually run by a team of doctors, nurses, social workers, counsellors and trained volunteers. A hospice can usually be accessed for short-term care such as respite, symptom management or end of life care. They are not an alternative to a care home.
The aim of a hospice is to provide a person with care – often from the time they’re diagnosed – to improve their quality of life throughout their illness. This may involve support to meet their medical, emotional, social, practical, psychological or spiritual needs. The needs of the person’s family and carers will also be assessed.
There are often day services available such as art and music therapy, and some hospices have exercise equipment available for gentle rehabilitation.
To find out more, see our information about Marie Curie hospice care.
Marie Curie Nurses
A Marie Curie Nurse or Healthcare Assistant will generally provide one-to-one nursing care and support overnight in a person’s home, usually for eight or nine hours. In some areas, they can offer care for a shorter period of time, or during the evening or daytime, as well as care at very short notice in a crisis.
Marie Curie Nurses can:
- assess, plan and provide a person’s nursing needs
- give the person and their family advice on prescribed medications including injections and drugs via a syringe driver
- give care as set out in the district nurse’s care plan
- assist with personal care needs such as washing, dressing and mobility
- help with taking medicines
- provide much-needed respite for the family in the persons’ own home
To find out more, see our information about Marie Curie Nursing services.
As well as dispensing medicine, a person’s local pharmacy can give health advice without the person having to make an appointment. This can be especially helpful at times when someone is unable to see their GP. Some pharmacies can also help with out-of-hours care by giving an emergency supply of medicine without a prescription, if there is an arrangement in place with the GP.
Pharmacists can help with:
- filling repeat prescriptions
- disposal of unwanted or out-of-date medicines
- health screenings (eg for allergies)
- flu vaccinations
- health checks (blood pressure, cholesterol or blood glucose testing)
- prescription collection from local GP surgeries on behalf of patients
- emergency contraception
- truss fittings (this is an elasticated belt that helps with hernias)
- incontinence supplies
- needle exchange and supervised drug administration
- pregnancy testing
- help stopping smoking
- weight management
- supplementary and independent prescribing – some pharmacists can now prescribe prescription medicines for certain medical conditions
- treatment of minor ailments, including bugs and viruses, minor injuries, tummy troubles, women's health, skin conditions, allergies and children's problems
There may be a cost for some of these services, but the person might qualify for free prescriptions depending on where in the UK they live and their condition. The pharmacist or a benefits adviser can provide more information about what the person is entitled to. For more, see our information on prescription charges. (https://www.mariecurie.org.uk/help/money/free-reduced-health-services/prescriptions)
You can find pharmacists in:
- high street chemists and supermarkets
- GP surgeries or community health centres
- some hospices
When someone has a terminal illness, calling an ambulance or rushing to hospital is not always the best way to manage an emergency, and may go against the patient’s wishes as outlined in their advance care plan. For more details, see our information on recognising emergencies.
Urgent care may involve the following people and services:
- GP and the out of hours’ service
- palliative specialist care team (in some areas)
- ambulance service
- hospital A&E
They can help the patient by:
- relieving uncontrolled pain
- providing help when distressing symptoms worsen
- finding the cause and providing relief when new, severe symptoms appear
- identifying palliative emergencies and responding appropriately
- trying to avoid unnecessary hospital admissions
To access urgent care, call 111 to find GP and pharmacy out of hours services.
Call 999 if you cannot make contact with the other out of hours services. You should make it clear that you are calling about a patient with a terminal illness and that admission may not be the right option. Most paramedics are able to administer certain medications to relieve symptoms in an emergency.
The patient, or the person caring for them at home, should be given a list of appropriate emergency contacts to call.
Hospital teams provide in-patient care when needed, as well as out-patient clinics. Overall palliative and end of life care is managed by a ‘site specific’ or specialist consultant who is supported by a wider team. Most patients have attended a hospital for assessment and treatment through their disease pathway before receiving palliative and end of life care.
For non-emergency care, patients are usually referred to hospital by their GP or palliative care team. Some services are also offered on a community outreach basis, in GP surgeries, local clinics or in the patient’s home.
The hospital team includes:
- the palliative specialist care team
- specialist consultants and doctors
- other specialist nurses
- ward staff
- A&E staff
- psychologists and counsellors
- bereavement counsellors
- discharge coordinators
They can help with:
- specialist medical advice
- outpatient clinics
- tests to monitor the patient’s treatment needs
- inpatient care if needed to manage symptoms
- physical, speech and language or occupational therapy for symptoms, comfort and independence
- advice on nutrition and fluids
- advice on medications
- counselling, emotional and spiritual support
- help with transition from hospital to home
- emergency care
If someone is living with a terminal illness, their local social services department may be able to help by providing social care services, such as:
- special equipment and adaptations to their home
- help with personal care
- respite or day care services to give the patient and/or their carer a short break
- long-term admission to a care home
Social workers are used to helping people in difficult emotional circumstances and can provide invaluable support. The person’s local social services department will have social workers who can assess their need and their carer’s needs (https://www.mariecurie.org.uk/help/money/benefits-entitlements/carers/assessments for local services.) Most hospitals and hospices also have social workers.
Social workers can:
- help a person living with a terminal illness get access to services like meals delivered to their home or help with cleaning and other domestic tasks
- help the patient access services such as community transport, day centres and activities
- advise the person’s family on practical and financial matters such as housing, claiming benefits and solving money problems
- provide advice when considering a care home
- help with emotional issues
- support for the whole family, including children and young people
NHS continuing healthcare
NHS continuing healthcare is health and social care that patients may be able to get free of charge from the NHS across the UK. It’s for people who aren’t in hospital but have complex ongoing healthcare needs. It’s sometimes called fully-funded care.
For more details, see our information on NHS continuing healthcare.
Paid care workers
The person or their family could get a paid care worker through an agency to help during the day or overnight. Payment will need to be made to the agency by the person or their family.
A paid worker can help with:
- preparing meals
- washing and dressing
- taking the person out and about
The person or their relatives could also employ a support worker or personal assistant directly. They will then be classed as the support worker’s employer. If the person and their family choose to do this, there are many important issues to consider before going ahead, such as pension enrolment and National Insurance contributions. You could signpost them to information about this from Carers Trust.
Local charity support
Some charities have local schemes that can provide help with home tasks that the person or their friends and family may struggle to find time for, such as gardening or cleaning. I some areas, the British Red Cross can provide a short-term shopping service. The person’s local carer service should be able to provide information on what’s available.
Marie Curie Helper volunteers
Marie Curie has trained Helper volunteers who can provide practical and emotional support to someone living with a terminal illness.
Marie Curie Helper volunteers can help by:
- getting patients to an appointment
- being there when the person needs someone to talk to or a listening ear
- running errands
The patient will be matched with a Helper volunteer according to their needs and interests, who will spend up to three hours a week visiting them at home or speaking to the person over the phone.
Other local services
You could also find out if the patient is part of a local community group or faith group that could provide support. If the patient is not part of a community or faith group, ask at their GP surgery or contact their local council to find out about support services in their community. If the palliative care team includes a specialist social worker, they may be able to tell the patient about community groups and other support services in their area.
Charities play a big role in supporting people with a terminal illness, as well as their carers, friends and families. Below, we’ve listed just a few that may help someone you care for find practical advice, information, and emotional support:
- Marie Curie
- Macmillan Cancer Support
- Dying Matters
- Carers Trust
- Carers UK
- Age UK
- Citizens Advice
- Motor Neurone Disease Association
- MS Society
- Alzheimer’s Society
- Parkinson’s UK
- British Lung Foundation
- British Heart Foundation
As palliative and end of life care tends to involve a lot of healthcare professionals, good communication is essential. This ensures that everyone is aware of the patient’s wishes and preferences, and can act accordingly.
It is good practice to speak with the other professionals involved in the patient’s care regularly. Every local area should have a system that allows professionals to share information for each individual receiving palliative and end of life care. This might include a summary care record that you can access securely online, or notes and care plans in the home.
In some areas, there are systems which record specific information, including advance care plans, that are accessible to professionals. ‘Co-ordinate My Care’ is an NHS clinical service which shares information with a patient’s healthcare providers , coordinates care, and records wishes of how the patient would like to be cared for.
The patient’s GP should be aware if this type of record is in place. The local ambulance service may also have a record of what to do in case of an emergency. For example, in emergency circumstances, this record might tell paramedics whether the person wants them to attempt resuscitation or not, as part of an advance care plan. The GP can submit a form to the ambulance service to make them aware of this.
In some parts of the UK, the ‘message in a bottle’ initiative allows people to store a form with important information about themselves and their condition in a small plastic bottle for emergency services to retrieve. This is usually stored in the person’s fridge, as this is where emergency services are trained to find it. More information on how message in a bottle works and where it is active can be found on the Lions Club website .
Some GPs hold monthly meetings with district nurses and palliative care teams to discuss patients who are nearing the end of their life. The palliative care team will also hold a regular multidisciplinary team meeting to ensure that the best care is being provided. As a professional involved in the care of someone with a terminal illness, you could find out whether they are known to the palliative care team and whether you could attend meetings, if you feel it will benefit the patient.
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