What is End of Life Care?

End-of-life care is support for people, regardless of their age, who are in the last months or years of their life.

In Swansea Bay we aim to help you live as well as possible until you die, and to help you die with dignity.

We will ask you about your wishes and preferences and take these into account as we work with you to plan your care. We will 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. 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.

Experts have agreed that there are five important priorities for the care and support that you and your carers should expect to receive in the last few days and hours of life.

You should be seen by a doctor regularly and if they believe you will die very soon, they must explain this to you and the people close to you.
The staff involved in your care should talk sensitively and honestly to you and the people close to you.
You and the people close to you should be involved in decisions about how you are treated and cared for, if this is what you want.
The needs of your family and other people close to you should be met as far as possible.
An individual plan of care should be agreed with you and delivered with compassion.

For children and young people aged 17 and under, they will be seen by paediatric specialist care but will receive the same level of care and support as adults.

Who provides end-of-life care?

Different health and social care professionals may be involved in your end of life care, depending on your needs. For example, hospital doctors and nurses, your GP, community 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.

If you are being cared for at home or in a care home, your GP has overall responsibility for your care. Community nurses usually visit you at home and family and friends may be closely involved in caring for you too.

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. Some of them may be expected to die within the next few hours or days. Others receive end of life care over many months.

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

How do I find out about end-of-life care services in Swansea Bay University Health Board?

If you are approaching the end of life, or caring for someone who is, and you want to find out about the care and support available, your first step is to speak to your GP or to call the number your healthcare professionals have given you.

Part of their job is to help you understand which services are available locally. You can ask about all sorts of help – for instance, there may be particular night-time services they can tell you about.

Planning ahead

We want to tailor your care to your particular needs. To help us do this we need to know what is important to you (your priorities and preferences), and we need to discuss how your condition may affect you, over time, with you and those important to you. In that way, you can be more involved in decisions about your treatment and care.

There are several ways that we can help you with this advance and future care planning.

Expression of preferences including My Life My Wishes
Advance decision to refuse treatment
Record of Best Interest Decision

It is also helpful for those important to you to know what your priorities and preferences are, should you become unable to tell your doctors. Examples of this are if you are in a coma, or if you have dementia. You can ask someone to help doctors to make treatment decisions on your behalf, if you are unable to do so yourself, by making them your Lasting Power of Attorney.

The guide about end-of-life care also covers legal issues to help you plan ahead for your future care. These include creating a lasting power of attorney, so the person or people of your choice can make decisions about your care if you are no longer able to do so yourself.

Treatment Escalation Plan

As well as the health care professionals knowing what is important to you, it is also important for you to know:

how you are and what treatment options may be available to you
how likely they are to help you, as well as what having those treatments involve – helping you to balance the possible benefits and the possible harms.