The standards of care you should expect at the end of life
When you approach the end of life, you should expect a level of care that is compassionate and sensitive to your needs and preferences. Clear communication between you, those close to you and healthcare staff is especially important. Your condition must be monitored and healthcare staff should respond if anything changes.
Each nation in the UK has set standards that healthcare professionals need to follow when caring for someone at the end of their life.
The five priorities of care
The five priorities of care apply to people living with a terminal illness in England. They’re based on being open with everyone affected and making sure that the best possible care is given at every stage. They replace the Liverpool Care Pathway (LCP).
Care should be led by a senior doctor and a lead nurse with support from palliative care services when needed. Doctors, nurses, carers and anyone else involved in caring for you will have high professional standards with the skills, knowledge and experience to care for you and your family properly.
Here are the five priorities.
- The chance of your illness being terminal and how it will affect your lifespan should be recognised and communicated clearly. Any decisions and actions taken should be made in accordance with your needs and wishes. These will be regularly reviewed and decisions will be revised if needed.
- Sensitive communication takes place between staff and you, and those important to you.
- You and those important to you should be involved in decisions about treatment and care as much as you want.
- The needs of your family and others important to you are actively explored, respected and met as far as possible.
- An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.
The LCP has already been phased out in Northern Ireland. Approaches like the Gold Standards Framework and the Preferred Priorities for Care are used instead. These share some common points.
There should be timely identification that you are near the end of life and probably in the final days or hours of life.
- Sensitive and clear communication should be at the centre of your care.
- Your physical, psychological, spiritual and social needs should be known and met where possible. Your needs should be regularly reviewed during your last days and hours.
- You should be comfortable and your symptoms well managed. Psychological, social and spiritual support should be part of this.
- Support for family and carers should be provided during your last days and after your death.
The LCP has also been phased out in Scotland and has been replaced with four key principles.
- Clear and sensitive communication needs to be at the centre of your care.
- Your diagnosis and any major decisions about your care should be based on discussion with qualified healthcare professionals.
- Your physical, psychological, social and spiritual needs should be addressed as far as possible.
- The wellbeing of relatives, carers and anybody close to you should be taken care of.
The All Wales Integrated Care Pathway is a guide to care for you and your family. You’ll find the main guidelines below.
- You and your family should be made aware that you have a terminal illness and your care needs should be discussed.
- Clear communication between you, your family and those responsible for your care is a priority. This includes out of hours services.
- Your symptoms should be well managed and you should receive emotional and spiritual support according to your wishes.
- Your needs are to be assessed regularly to ensure you’re getting the right level of care.
- Your family’s practical and emotional needs should be met as far as possible.
Integrated care pathway (ICP) for the last days of life (Wales) – documentation
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