End of Life Care and What it Involves

End of life care is support for people who are in the last months or years of their life. End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences and take these into account as they work with you to plan your care. They should also support your family, carers or other people who are important to you. You have the right to express your wishes about where you would like to receive care and where you want to die. If you are approaching the end of life, or caring for someone who is, please speak to your GP to find out about the care and support that is available.

What is palliative care?

If you have an illness that cannot be cured, palliative care makes you as comfortable as possible by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. Palliative care is available when you first learn you have a life-limiting (terminal) illness. You might be able to receive palliative care while you are still receiving other therapies to treat your condition.

End of life care is a form of palliative care you receive when you're close to the end of life.

Who provides palliative care?

Many healthcare professionals provide palliative care as part of their jobs. However, some people require additional specialist palliative care which may be provided by consultants trained in palliative medicine, specialist palliative care nurses, or specialist occupation therapists/physiotherapists.

Palliative care teams are made up of different healthcare professionals and can coordinate the care of people with an incurable illness. As specialists, they also advise other professionals on palliative care.

When does end of life care begin?

End of life care should begin when you need it and may last a few days or months, or sometimes more than a year.

People in lots of different situations can benefit from end of life care. People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this is not always possible to predict. This includes people whose death is imminent, as well as people who:

have an advanced incurable illness, such as cancer, dementia or motor neurone disease
are generally frail and have co-existing conditions that mean they are expected to die within 12 months
have existing conditions if they are at risk of dying from a sudden crisis in their condition
have a life-threatening acute condition caused by a sudden catastrophic event, such as an accident or stroke You can receive end of life care at home, in a care home, hospice or be cared for in hospital, depending on your needs and preference. People who are approaching the end of their life are entitled to high-quality care, wherever they're being cared for.

You can receive end of life care at home, in a care home, hospice or be cared for in hospital, depending on your needs and preference.

People who are approaching the end of their life are entitled to high-quality care, wherever they're being cared for.

Receiving end of life care at home

You may not need to move away from home to receive care, as end of life and hospice care can be provided at home. To find out what's available locally, please speak to our paramedic or one of our receptionists.

We may be able to arrange for community nurses to come to your home and provide nursing care for you. You may also need specialist care from community palliative care nurses who visit you at home to:

provide or arrange hands-on nursing or personal care, if you need it
advise on pain and symptom control
provide practical and emotional support for you and your carers at home

If expertise is required from other specialist professionals, the community palliative care nurses can involve these as well.

To help you remain at home, your local authority's social services department may provide a range of services and equipment to help you as you approach the end of life. This may include home adaptations, such as hand rails.

Help to care for you at home

Hospices and palliative care services can also provide support for your partner, relatives or anyone else who is helping to care for you at home. This could be through community support groups or one-to-one advice. Not everyone feels comfortable helping family or friends with personal care.

Marie Curie provides practical advice about caring for someone with a terminal illness. This includes helping them wash, taking their medication, and standing and walking. Macmillan also provide advice about ways that your carer can help you manage your practical needs and symptoms at home.

Support from a hospice

Although you may wish to continue living at home, you can always visit a hospice during the day for the care and support you need. Going to a hospice for one or more days a week means you could access some types of services that are not available to you in your own home, such as creative and complementary therapies like art and physiotherapy. It’s also a place where you can meet other people.

Our local service is at the Wisdom Hospice in Rochester, Kent. Telephone: 01634 830456.

End of life care in a care home

End of life care can potentially be delivered in a care home. Their trained staff should be available to look after you day and night. They can provide the same type of care you may have been receiving at home, such as help with washing, dressing and providing meals.

Some care homes provide skilled nursing care to residents when they require it. These are sometimes called nursing homes. They are suitable for people who have a disability, a serious long-term condition or very restricted mobility.

Care homes can be run by:

voluntary organisations
private individuals
private companies
the local council

Care homes near you

Your local council’s adult social care services department should be able to find out what is available in your area. The palliative care team, hospital doctor or district nurse may also be able to assist you with this.

If you decide to consider a care home, you should ask questions about its experience and support in providing end of life care:

what does the Care Quality Commission (CQC) say about the service?
do the care home staff receive regular end of life care training?
what are the arrangements for care and support from the GP and community nurses, both for routine care and for emergencies?
does the care home participate in a service improvement programme run by local health or social care services?
is the care home accredited for the quality of its service by the Gold Standards Framework or other accreditation system that is approved by the CQC?

Your care may involve the local hospital's palliative care team, the local hospice team, your GP, community nurses and district nurses.

The CQC has a Directory of Care Homes.

Hospice care

The aim of hospice care is to improve the lives of people who have an incurable illness. Hospices provide care for people from the point at which their illness is diagnosed as terminal to the end of their life, however long that may be. That does not mean hospice care needs to be continuous. If people’s condition has become stable and they are feeling well, they can take a break from hospice care.

Hospice care places a high value on dignity, respect and the wishes of the person who is ill. It aims to look after their medical, emotional, social, practical, psychological, and spiritual needs, and the needs of the person's family and carers. This is often referred to as “holistic care”. Hospices also extend care to friends or family who are close to the patient, as well as into the bereavement period after the patient has died.

Where is hospice care provided?

Most hospice care is provided at home, but it can also be provided in a care home, as an in-patient at the hospice itself, or as a day patient visiting the hospice. Hospice care is a style of care, rather than something that takes place in a specific building. Hospice teams might include doctors, nurses, healthcare assistants, social workers, therapists, counsellors, chaplains and trained volunteers.

Hospices aim to feel more like a home than hospitals do and can provide individual care in a gentler and calmer atmosphere.

What does hospice care cover?

The services that hospices offer vary, but most offer medical and nursing care, including the management of pain and other symptoms. They may also offer:

physiotherapy
occupational therapy
complementary therapies, such as massage
rehabilitation - helping you remain independent through things like physiotherapy
respite care - looking after you so your carers can have a break from caring for a short while
information about coping financially
bereavement care
spiritual and psychological help

If you are considering hospice care, the staff at most hospices will be happy to talk to you about what the hospice offers and/or show you around the facilities. This is a great opportunity to ask the staff questions and discuss any worries you might have.

When does hospice care start?

Some people think that you only have hospice care when you are dying, but this is not true. A hospice palliative care team might help control symptoms such as pain or breathlessness early on in your illness, with you staying at the hospice for a few days before going home again. Or you might go into the hospice so that your family or carers can have a break from looking after you for a short while. This is called respite care. Not all hospices offer this service so you would need to ask the hospice if they do, if this is something you or your family/carers may wish to consider.

Some people have a number of periods of hospice care, depending on their condition and their wishes.

Hospice care is free. It is paid for through a combination of NHS funding and public donation. You can contact a hospice directly yourself, but the team will usually also ask for a referral from your doctor or nurse. Places are limited.

End of life care in hospital

Hospitals have specialist palliative care teams who work alongside doctors, nurses and other healthcare professionals who work on the ward where you are staying.

Palliative care teams provide hospital staff with specialist advice on pain and symptom control. They can also help staff with your discharge plan, or your transfer to a hospice, community hospital or care home.

When there is no cure for an illness, palliative and end of life care aim to make the end of your life as comfortable as possible.

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