A guide to end of life services
Please be aware - this information is for healthcare professionals.
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Different health and social care professionals are involved in palliative and end of life care. Understanding how these professionals can help you and knowing what is available in your area, can help you deliver the best care for your patients.
Palliative care is the treatment, care and support of a person from when they are first diagnosed with a life-limiting (terminal) illness. End of life care is part of palliative care and is the treatment, care and support they receive as they're nearing the end of their life.
Palliative and end of life care should be person-centred. This means identifying and meeting a person’s individual physical, psychological, social and spiritual needs. Most people will have a range of needs and it might take different members of a multidisciplinary team to manage them all. It's why someone who is living with a terminal illness will have different health and social care professionals, volunteers, as well as friends and family members, all involved in their care. We also have information about people who provide palliative care for the public.
On this page:
How to find local services
Knowing what services are available in your area can help you coordinate the best care for a patient's individual needs.
On this page, we introduce the wide range of services that exist for adults living with a terminal illness. Not every service will be available or operate in the same way in every area of the UK.
You can find more information about Marie Curie services on our Patient services page. You can also contact our Support Line on 0800 090 2309.
GPs
For people living at home or in a care home, their GP is responsible for their medical care. GPs work with other healthcare professionals, such as district nurses, community matrons, hospital teams, physiotherapists, dietitians, palliative care clinical nurse specialists, as well as community pharmacists, to provide the best care for each person.
These are some of the things that the GP can do:
- Assess someone’s symptoms and prescribe medicines and other treatments.
- Prescribe Just in Case medicines before a patient's symptoms get worse. We have information for patients and the public about Just in Case medicines.
- Seek expert advice from specialists.
- Provide information on the patient's condition and the support services available.
- Liaise with the district nurse regarding care at home.
- Refer the patient to local hospice services.
In Northern Ireland, multidisciplinary teams consisting of physiotherapists, mental health specialists and social workers are being embedded in GP surgeries. This allows patients to access a wider range of services in their GP surgery to better meet their needs.
Community pharmacists
If you have a community pharmacist in your area, they may be able to provide additional support. As well as dispensing and advising on medication, community pharmacists are becoming more specialised, reflecting the needs of the community. For example, they may be able to advise on local palliative care services and connect you to these.
District nurses
If a person can no longer leave their house or care home for appointments or treatment, a district nurse can help to arrange care where they are living. District nurses can provide medical care such as monitoring skin conditions, administering medicines, changing dressings, managing symptoms and ordering equipment. District nurses can also arrange certain equipment to make caring for patients at home easier. For example, they can arrange for a hospital bed or a commode.
District nurses also coordinate other services that the patient might need, but whether they're available will vary from area to area. These can include community nurses, healthcare assistants, care workers, Marie Curie Nurses, palliative care clinical nurse specialists, or other care agencies. District nurses work with the patient and those important to them to prepare a personal care plan. They can then refer them to the best services to meet their individual needs.
District nurses often play a key role in supporting independence by providing and coordinating palliative and end of life care so the patient can remain in their own home.
Marie Curie Nurses
If someone is being cared for at home, they might get help from the hospice care at home service. This service is provided by registered nurses and healthcare assistants. The patient's GP or district nurse can refer them to the Marie Curie hospice care at home service. The patient does not need to live near a Marie Curie Hospice for this, but the hospice care at home service is not available in all parts of the UK. You can check if it's available in your area.
Marie Curie Nurses and Marie Curie Healthcare Assistants usually provide overnight care for a shift of eight or nine hours when someone is in the last weeks or days of life. In some areas, they also provide a rapid response service when someone is in crisis to help them remain at home rather than being admitted to hospital. Rapid response services are typically available overnight and at weekends. Marie Curie Nurses have specific training in end of life care. They will make sure the patient is comfortable, and can also offer advice, support and brief respite for the people caring for them. They can also assess the patient's needs and inform the district nurses of any changes so they can plan for the kind of additional help they should receive.
Marie Curie Healthcare Assistants do not have a nursing qualification but have received specialist training in caring for people at end of life. They can help with washing, dressing, mobilising, pressure area care, support with medication and can give emotional support to the person and those important to them.
Specialist palliative care team
A specialist palliative care team might involve many health professionals, including doctors, nurses, occupational therapists and physiotherapists. Someone may be comfortably managed by their GP and district nursing services at the end of their life. But if they need any extra support, the palliative care team can help to manage pain and other distressing symptoms and can offer emotional, spiritual and psychological support to the person and those close to them. Specialist palliative care teams can provide care in hospital, in a hospice, in someone's own home or in a care home, alongside the person's usual healthcare team.
Macmillan nurses and other specialist nurses
Macmillan Cancer Support funds a wide range of professionals to support people affected by cancer. A Macmillan nurse can help with pain and symptom control and provide information about treatment. They do do not carry out routine nursing tasks, but they may call or visit you to check on the patient's symptoms. Some specialise in palliative care and managing symptoms, while others specialise in cancer. To get support from a Macmillan nurse, a person needs to be referred by their GP, their hospital consultant, a district nurse or a hospital ward sister.
If the person does not have cancer, they may get support from specialists who are experts in their illness such as motor neurone disease (MND), multiple sclerosis (MS) or Parkinson’s disease. They can be referred through their GP or they may already have support through a hospital team.
Hospice care
Hospices provide free nursing and medical care in a friendly and comfortable setting, as well as emotional and practical support. Some people stay in a hospice as an inpatient when they need specialist care. Some hospices provide services in a patient's own home. Hospices can be fully funded by the NHS, but most are run by various charities, including Marie Curie.
A hospice may also provide day services for people who are living in their own home. These include support groups, exercise programmes, art therapy, music therapy, complementary therapy, counselling and spiritual support.
Read more about Marie Curie Hospices or call our Support Line on 0800 090 2309.
Social care
Social services can organise non-medical care – things like having meals delivered, home adaptations, and help with washing, dressing and eating.
A social worker or another trained professional can assess someone’s suitability for this type of care and help organise it. They usually work as part of the local social services department (social work department in Scotland or health and social care system in Northern Ireland).
If someone wishes to live at home, then they or a member of their healthcare team, or a family member, can request an assessment of their needs. Depending on their needs they may be able to get support from social services.
Social services can also help when someone needs to move into a care home.
If someone has a family member or friend looking after them (an unpaid carer), social services might be able to help them to get support as well. They can talk to them about their own needs. Support might include putting them in touch with local support groups, help with taxi fares if they don’t drive, and getting someone to take over caring for a while so they can take a break (this is sometimes called respite care).
Paying for social care
The local council, authority or health and social care trust may pay for some or all of the person’s social care. But the person may have to pay for some or all of it themselves. Whether they have to pay might depend on what care they need, where they live and how much money they have.
Read more about getting nursing and personal care at home.
NHS continuing healthcare
NHS continuing healthcare is social care funded by the NHS and can be provided in a variety of settings outside hospital, including the patient's own home or a care home. It is somtimes called fully-funded care. To be eligible, the person will need to be assessed by a team of professionals − a multidisciplinary team. A person's eligibility for NHS continuing healthcare is based on their assessed needs, and not on any particular diagnosis or condition.
If someone has a rapidly deteriorating condition that may be entering the terminal phase, they may be able to access a fast-track pathway to get this care in place more quickly.
NHS continuing healthcare is available in England and Wales. It may be available in Northern Ireland but is more difficult to access.
We have more information for people and their families on how to be assessed for NHS continuing healthcare.
NHS continuing healthcare is not available in Scotland, which has a different system. Instead, the councils' charging policies apply for social care, meaning the person may have to pay some of their costs towards their care.
Private care workers
The person or their family could employ a paid care worker directly or through an agency to help during the day or overnight. Payment will need to be made to the care worker or the agency by the person or their family. Care workers can help with preparing meals, washing and dressing and taking the person out and about.
Read the information we have for the public about getting nursing and personal care at home.
Unpaid carers (family and friends)
A carer is someone looking after a partner, friend or family member who is not able to manage by themselves. Each caring role is different but carers might help with many different aspects of care, including washing and dressing, giving medicines, cooking and cleaning, taking the person to appointments and managing finances.
For many people, looking after a terminally ill partner, friend or family member at home is “just something they do”. They do not think of themselves as the person’s carer. But recognising that someone is a carer can help them to access support from the NHS and other organisations who may describe them in this way. You may find it useful to share our information on getting support as a carer.
Companion at home service
Marie Curie has trained Companion volunteers who can provide practical and emotional support to someone living with a terminal illness. The person will be matched with a Helper (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.
Find out more about the Companion at home service.
Charity organisations
Charities play a big role in supporting people with a terminal illness, their carers, friends and families. We've listed here just a few that may help anyone you care for find more practical advice, information, and emotional support:
- Marie Curie
- Macmillan Cancer Support
- Hospice UK
- Carers Trust
- Carers UK
- Age UK
- Citizens Advice
- Motor Neurone Disease Association
- MS Society
- Alzheimer’s Society
- Parkinson’s UK
- British Heart Foundation
- Asthma + Lung UK
Good communication
As end of life care tends to involve a lot of healthcare professionals, good communication between everyone who is involved is essential. This ensures that everyone is aware of the patient’s wishes and preferences, and can act accordingly.
Sharing information
It's good practice to speak with the other professionals involved in the person’s care regularly. Every local area should have a system that allows professionals to share information for each individual receiving 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 if the person consents to having their information shared in this way.
Advance care plans
In some areas, there are systems which record specific information, including advance care plans that are accessible to professionals. An advance care plan is a way for someone to express and document their preferences about how they wish to be cared for as their illness progresses. You can read the inforrmations we have for the public about advance care planning. The person's GP should know if this type of record is in place.
Ambulance services
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. The Do Not Attempt CardioPulmonary Resusciation (DNACPR) form can be completed by the GP, or hospital or hospice doctors and should be regularly reviewed. The form is kept in the patient records and should be accessible to everyone caring for the person. In some areas of the UK, the DNACPR form has been replaced by a ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) form .
Message in a Bottle
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.
GP meetings
Some GPs hold monthly meetings with the district nurses and palliative care teams to discuss people known to their services who are approaching end of life. As a professional involved in the care of someone at end of life, you could find out whether your patient is known to the palliative care team and if you are able to attend their meetings to learn more.
Useful resources
The Daffodil Standards is a free, evidence-based, structured approach to help GP practices consistently offer the best end of life care for patients.
Hospice UK has information on hospices across the UK.
You may find it useful to share our Being cared for at home booklet with people you’re caring for and those around them. It includes information about the care and support that’s available for someone living at home.
Macmillan Cancer Support’s Your Life and Your Choices booklet provides detailed information about the ways someone can plan ahead and make choices about their future care specifically if they live in Northern Ireland.
Beacon is a not-for-profit organisation that provides expert advice on NHS continuing healthcare. As well as chargeable casework, it is funded by NHS England to provide 90 minutes of free advice by their trained staff on any aspect of NHS continuing healthcare.
Key points
- End of life care should be person-centred and focussed on meeting a person’s individual physical, psychological, social and emotional needs.
- Different members of the multidisciplinary team may be required to meet all of someone’s different needs.
- Being aware of how palliative and end of life care services in your area operate can help you to make sure the person accesses the best care for them.
- Many people with a terminal illness will have lots of different health and social care professionals, volunteers, friends and family members involved in their care.
- Good communication between the different care providers is essential to coordinate the person’s care in accordance with their wishes and preferences.
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Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
