Time to find out the facts

Here’s an overview of what is meant by ‘end of life care’ as well as an outline of where end of life care can be provided and the roles of different health and social care staff who may be involved:

What is end of life care?
Where is end of life care provided?
Who might be involved?

What is end of life care?

You and the person you care for will come across a lot of confusing terms and language when first receiving a diagnosis. In particular there is a lot of confusion about what is palliative care and what is end of life care.
A life limiting illness is an illness for which there is no cure, for example motor neurone disease, dementia or advanced cancer. Sometimes this is referred to as a ‘terminal illness’.
Palliative care is the treatment, care and support for people with a life-limiting illness and their families and carers. Any treatment for the person you care for at this stage will be to manage their symptoms to ensure they have the best quality of life and to live as well as possible in the time left. It will concentrate on identifying their needs, preferences and wishes and will include support to you and other family members, both practical and emotional.
Palliative care can be provided at any stage of such life-limiting illness but it does not necessarily mean the person is about to die. You may find the person you care for receives palliative care for several years. Palliative care may also be given to someone as they approach end of life, although more frequently this is then referred to as end of life care.
End of life care is often considered to be provided in the last year of life, but this varies from person to person and diagnosis to diagnosis. Some people may receive end of life care in just their last few weeks or even days.
End of life care helps the person you care for to live as comfortably and pain free as possible and involves managing often complex physical symptoms. It also ensures you, as their unpaid carer, get the emotional support that you need.
End of life care also involves talking about what to expect towards the end of life: talking about what is important to the person regarding their needs and wishes, dealing with practical issues such as making a will, as well as thinking about what practical and emotional support you need.

Where is end of life care provided?

Care at home 

The person you care for may prefer to die at home or the home of a family member so that they can be with the people who love them in a familiar environment. As a family carer it is important to discuss this with them and their GP and how it might work in practice. Some questions to consider:

What equipment, technology and adaptations might be needed in the home?
What care can be arranged and who can organise and coordinate this?  (This could include hospice care and palliative care at home).
What will be the impact of different health and social care professionals coming into the home?
How willing and able are you to provide the care the person needs in the home?
Do you have the skills and training needed?
What happens if you don’t feel able to continue caring?  For more information go to Having a backup plan

Both you and the person you care for can contact their local social services team to get support with social care needs such as personal care.  You may find caring for someone challenging, so ask for your own needs assessment to look at what support you might need in your caring role.  This is called a Carers Assessment.
Healthcare is provided free across the UK, but the person you care for may have to pay for some or all of their social care. They may be able to access social care at home for free if they have complex ongoing healthcare needs. It’s called NHS continuing healthcare. If their condition is getting worse quickly and they might be nearing the end of their life, they may be given NHS continuing healthcare on a fast track basis. See Paying for Care for more information.
When thinking with the person you care for about where to receive end of life care go to Choosing where to be cared for.

Hospice Care

You may think that a hospice can only provide care when someone is about to die. This is a myth; as hospices can provide care for anyone with a terminal illness, sometimes from the time they receive a terminal diagnosis. In other words, hospices provide palliative care including end of life care.
The person you care for may not necessarily stay in the hospice – it will depend on their situation. They might stay at the hospice as an inpatient while they need specialist care, and then return home. Some people stay in a hospice in the last weeks or days of their life. Some hospices will offer day care, where the patient visits the hospice to use their services but doesn’t stay. Some hospices offer care in a patient’s home.
Hospices are staffed by a team of health and social care professionals, including nurses, doctors, physiotherapists, occupational therapists, complementary therapists, social care workers and chaplaincy services. They will work alongside others involved in somebody’s care such as their GP, community nurses, hospital consultants and nurse specialists.
Hospice care is free, paid for through a combination of NHS funding and public donation. You can contact a hospice directly, but the team will usually also ask for a referral from a doctor or nurse involved in the patient’s care.
To find your local hospice go to Directory For Further Information or visit Hospice UK

Hospital

The person you care for may suddenly become unwell and need tests or treatment. They may be referred to hospital by their GP or they may need to go into hospital in an emergency. Decisions about their end of life care may be made by staff in Accident and Emergency or by an assessment unit or ward. The hospital may have a palliative care unit or team where staff will help to control symptoms and provide emotional support and information for the person you care for and you, as their carer.

Care home or nursing home (residential care)

In a care home there are care staff who look after their residents 24 hours a day. The staff are professional care workers but they are not qualified nurses. They provide the same kind of care that you might give at home, such as help with washing and dressing, and providing meals. Care homes usually offer long-stay care, but they may also offer short-stay or respite care (giving you a break from caring).
A nursing home is like a care home, but there are qualified nurses on duty. If the person you care for requires frequent nursing care, then this type of home may be more suitable for them.

Your local social care teams/services and social care workers can help you organise both types of residential care. It can take some time as there may not always be space in your preferred home when you need it.
The person you care for may be eligible for funded residential care under the NHS continuing health care scheme. If they are not eligible for this then they may be able to get help with funding. Their local social care teams/services and social care workers will assess their needs and finances to see how much the local authority will pay and how much they will need to pay themselves. See funding end of life care for more information.

Who might be invoved?

There may be a number of people who become involved in the person you care for’s end of life care and the provision of support to you as their carer. The person you care for may receive support from some or all of the following people, and you and the person you care for can ask questions to any of them:

If the person you care for is at home then the primary health care team at their local surgery or health centre will be responsible for their treatment. This will usually include their General Practitioner (GP), practice nurses, district nurses and health visitors. GPs are able to refer to specialist doctors such as oncologists, haematologists and geriatricians, as well as palliative care specialists. The person you care for’s GP will be responsible for their medication and care at home, and can tell you and the person you care for about your local hospice and arrange a visit.

The district nurse will arrange and coordinate any care needed at home. This could include a specialist Marie Curie or Macmillan nurse, home care workers organised via social care teams/services and social care workers, or sitters provided by a local charity. Macmillan or chemotherapy nurses do not provide routine nursing tasks but can help with pain and symptom control for the person you care for. They will need to be referred by their GP, a hospital consultant, a district nurse or ward sister.

A social care teams/services and social care workers will come to you to carry out a needs assessment for social care ie. non-medical support, as well as carrying out a carer’s assessment of your own needs as the carer.

When a terminal illness has been diagnosed a specialist palliative care team will assess the needs of the person you care for and your own needs as a carer. This team will provide the best possible care for both of you and can be helpful in planning ahead for end of life together.

A counsellor is trained to help people in all types of situations, including end of life. They will be able to help you and the person you care for to understand and express their feelings, and cope better with the situation.

A chaplain is a cleric (minister, priest, pastor, rabbi or imam) or a lay representative of religious tradition attached to hospital or hospice. Their role is to offer spiritual support to you and the person you care for. A chaplain will listen to how you feel about end of life care without judgement and offer support which is right for you as an individual. They will be aware of the importance of diversity and of people’s different views and beliefs.

An occupational therapist (OT) will assess the skills and abilities of the person you care for in relation to day to day living tasks such as walking, personal care, cooking, eating etc. They provide practical support to enable the person to have as good a quality of life as possible as they approach end of life by providing equipment or adaptations that enable them to be as independent as possible. They can also provide you, as their carer, with training, guidance and advice on how to keep yourself safe, for example when moving and handling.
A physiotherapist can help the person you care for and you, as their carer, in relation to maintaining mobility for as long as possible. Even in the final stages of illness, physiotherapy has been proved to relieve pain and improve mobility, enabling people to adjust and adapt to the consequences of their illness. They can assist in improving a patient’s quality of life by maximising their functional independence and helping to provide relief from distressing symptoms such as breathlessness and fatigue.
A nutritionist or dietician is not just an expert source of nutrition knowledge, but also has the skills to support you and the person you care for through some very difficult social and emotional issues that are often associated with eating and terminal illness. Good eating is not just about eating well but also about socialising over a meal and bringing normality to everyday life. You, as a carer, may spend a lot of time preparing appetising meals for the person you care for to find they only eat a few mouthfuls or they do not want to eat at all. A dietician will work with you to allay your anxieties about how to keep the person ‘strong’.

For more general information about what is end of life and who is involved please go to – NHS what end of life care involves.