Adult: For The Public
What does palliative mean?
Palliative care focuses on quality of life. If you have an illness, disease or condition that is incurable, palliative care makes you as comfortable as possible, by managing any pain or other symptoms. It also involves psychological, social and spiritual support for you and your family or those people who provide care for you. This is called a holistic approach, because it deals with you as a whole person, not just your condition or symptoms.
Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition, to enhance your quality of life. Palliative care is available to everyone who needs it.
Palliative care covers any life limiting condition, not just cancer. These could include, for example, heart failure, lung disease, dementia, Motor Neurone Disease and many more.
What does holistic mean?
Holistic refers to treating you as a whole person, not just your symptoms or illness. It will look at your psychological and emotional needs, your spiritual needs, your social needs and the needs of your family, carers and loved ones.
Who provides palliative care?
Many healthcare professionals provide palliative care as part of their role in looking after you and are Specialists in their own right.
These could include:
- Your GP
- Community or District Nurses
- Physiotherapists or Occupational Therapists
- Social Workers
- Hospital Consultants and Doctors
- Hospital Nurses
- Hospice teams
This group of health professionals are known as a Multidisciplinary Team or MDT.
Some people need additional specialist palliative care. Specialist Palliative Care Teams are made up of different healthcare professionals who co-ordinate the care of people with an incurable illness, disease or condition. As specialists, they also advise other professionals on palliative care. This specialist care may be provided by Consultants trained in palliative medicine, Specialist Palliative Care Nurses, or Specialist Occupational Therapists or Physiotherapists. To meet holistic needs these can also include Social Workers, Family Support Teams, Complementary Therapists and Chaplains or Faith Leaders.
In order to ensure that people with life limiting conditions receive the treatment and support they need early identification of those conditions is vital.
To aid earlier identification there are several tools available to professionals who look after you, such as your GP. This may mean you are added to the GP Supportive Care Register (sometimes known as Palliative Care Register).
To support your care and improve your quality of life it is important that you have conversations about your wishes so that you can plan ahead, commonly called advance care planning.
What is End of Life Care?
End of life care is support for people who are in the last year, months, weeks or days of their life.
Enabling personalised care for those people coming to towards the end of their life is a priority across the North West. This means supporting people to live well in the last years of their life before dying in the place of their choice with peace and dignity, while supporting families and carers through to bereavement.
The people providing your care should ask you about your wishes and what is important to you and take these into account as they work with you to plan your care. They should also support your family, people who provide care for you or other people who are important to you.
Planning ahead for the end of life
This is known as advance care planning or personalised care planning and involves thinking and talking about your wishes for how you’re cared for in the final months of your life. This can include treatments you do not want to have as well as where you would like to receive your care and who you would like to be involved. You may wish to think about practical matters, such as financial planning, support for your dependents and any pets, or help in the house.
Planning ahead like this can help you let people know your wishes and feelings while you’re still able to. This is likely to be more than one discussion and be done over a period of time.
Letting your family and those important to you know about your wishes could help them if they ever have to make decisions about your care. Writing down or recording what you want will also help and there are some examples of booklets that could help with this. These can be found here.
Electronic Palliative Care Coordinating Systems (EPaCCS)
Electronic Palliative Care Coordination Systems (EPaCCS) is a means to capture and share information electronically from people’s discussions about their care. The aim of this is to ensure that any professional involved in that person’s care has access to the most up to date information, including any changes to their preferences and wishes and personalised care plans.
The core record is usually kept by the General Practitioner in their electronic system and information sharing agreements put into place to allow relevant professionals involved in the person’s care to view and therefore be aware of the individual’s palliative and end of life personalised care plan.
Why is information sharing important?
This link demonstrates the importance of EPaCCS as a means to sharing PEoLC information across relevant services which individuals may access.
EPaCCS Patient Information Leaflet * *Leaflet currently under review
How can I get involved?
People’s Voice is a group of lay people who have lived experience of, or an interest in, palliative and end of life care. If you would like to know more about People’s Voice please visit this link.