Palliative and end of life care: information for patients
What is palliative care?
If a patient has an illness that can’t be cured, palliative care helps patients to be as comfortable as possible, by managing pain and other distressing symptoms. It also involves psychological, social and spiritual support for patients and for their family or carers.
Palliative care isn’t just for the end of life. Patients may receive palliative care earlier in their illness while they are still receiving other therapies to treat their condition.
Who provides palliative care?
Many healthcare professionals provide palliative care as part of their jobs, such as GPs or community nurses.
Palliative care may be provided in people's homes, or in specialist centres like hospices and in hospitals.
Some people need additional specialist palliative care. This may be provided by consultants trained in palliative medicine, specialist palliative care nurses or others, for example, specialist occupational therapists, physiotherapists or social workers.
Specialist palliative care teams work across community, acute hospital and hospice settings. As well as providing direct hands-on care to people living with life-limiting illnesses and their families and carers, specialist palliative care teams have an important role in indirect care through providing education and training to health and care professionals.
What is end of life care?
End of life care is support for people who are in the last months or years of their life. It aims to help people to live as well as possible until they die, and to die with dignity.
It involves health and social care professionals taking into account patients’ wishes and preferences and working with them to plan their care. It also includes support for patients’ families, carers or other people who are important to them.
When does end of life care begin?
People are generally considered to be approaching the end of life when they are likely to die within the next 12 months, although this isn’t always possible to predict. This includes people whose death is imminent, as well as people who:
- have an advanced incurable illness such as cancer, heart failure, advanced lung disease, dementia or motor neurone disease
- are generally frail and have co-existing conditions that mean they are expected to die within 12 months
- are at risk of dying from a sudden crisis in an existing condition
- have a life-threatening acute condition caused by a sudden catastrophic event, such as an accident or stroke
Who provides end of life care?
Different health and social care professionals may be involved in end of life care, depending on the patient’s needs. For example, hospital doctors and nurses, GPs, community (district) nurses, hospice staff and counsellors may all be involved, as well as social care staff, chaplains (of all faiths or none), physiotherapists, occupational therapists or complementary therapists.
Further information for patients, carers and families
An Advance Care Plan is designed to help you plan for the future and record your preferences for the care you would, or would not like to receive, and where you would like to receive that care. There’s an example on the York Teaching Hospital NHS Foundation Trust website and there's a useful template developed by the West Yorkshire and Harrogate Health and Care Partnership.
The Mental Capacity Act 2005 enables a mentally capable adult to make plans for a time when they may no longer have capacity. This can be done through Lasting Powers of Attorney and Advance Decisions. You can read more, here.
An information sheet about all things relating to End of Life care and support (previously compiled by NHS Hambleton, Richmondshire and Whitby CCG), is available here.
A document to help patients plan for end-of-life and ensure their wishes are recorded, together with other useful information to help family members, is available here.
A leaflet has been produced (used across Yorkshire and Humber) to help patients and their families and carers understand what happens when the heart stops beating, how cardio-pulmonary resuscitation (CPR) can be used, and when it may not be helpful. It may be upsetting to talk about resuscitation, but the booklet tries to explain the issues as clearly and sensitively as possible.