Planning for your future when you have advanced liver disease
Chronic liver disease is an unpredictable condition. However, there are some symptoms that indicate the liver has become so badly damaged it can no longer work properly – this is known as ‘decompensated cirrhosis’. It’s important for patients with decompensated cirrhosis to have the opportunity to talk about the impact of their condition, and to think about their wishes for the future.
This information will help you talk to your hepatology team, GP, relatives and carers about how you would like your future care to progress, and encourage you to start those conversations early, so you can make your preferred care options clear.
Although these conversations can be difficult, patients and their families or carers often find that planning ahead brings them peace of mind. Your healthcare team and loved ones need to understand your wishes and be aware of your thoughts and preferences.
In some cases, you may be referred to a supportive and palliative care team, who are experts in this area. The information here helps you to understand their role.
What is supportive and palliative care?
Supportive and palliative care teams aim to improve the quality of life of people with an illness that will shorten their lives, enabling them to live as well as possible for as long as possible. Supportive and palliative care teams can help by managing any symptoms you might have, as well as providing psychological, social and spiritual support. They can also make sure your family is supported and help you to access any financial help you may be entitled to as a result of your illness.
What is hospice care?
Hospice care is specialist supportive and palliative care that is linked to a specific hospice organisation. Hospices provide different services – many run community and day services so you don’t need to be admitted to a hospice to benefit from the care it offers. Volunteers often assist at hospices, but clinical care is always provided by medically trained professionals. Hospice care is simply one way of providing supportive and palliative care services.
How do I access palliative and hospice care?
Your GP, or another member of your health and social care team, such as your liver doctor (hepatologist), can refer you. The services offered by supportive and palliative care teams will vary depending on where you live. To find out what is available in your area, contact your GP or social care team.
What should I discuss with my supportive and palliative care team?
The types of things that you may wish to discuss with your care team will vary from person to person. Your care plan should be written down and be reviewed on a regular basis so that it meets your current needs. Remember that it is flexible and that you can change your wishes at any time.
Some examples of the things that you may wish to discuss include:
- Your treatment choices
- Managing your symptoms
- How to manage your diet and fluids
- Where and how you wish to be cared for should your condition deteriorate
- How to ensure the support you have meets your needs
- Who you would like contacted and who you would like to make decisions on your behalf.
Support & information
To speak to a specialist liver nurse, call the British Liver Trust helpline on 0800 652 7330 or visit our Support for you page for more information on support groups and our online community.
If you are a friend or family member coping with grief, the charity Marie Curie also have information and support.
For more detailed information you can download our Thinking ahead booklet. It also covers end of life care in a separate section that can be looked at when you feel ready.
Expert reviewed by: Dr Hazel Woodland, Clinical Research Fellow in Hepatology, University Hospitals Bristol NHS Trust; Dr Fiona Finlay, Consultant in Palliative Medicine, Queen Elizabeth University Hospital Glasgow; Professor Karen Forbes, Professional Teaching Fellow and Consultant in Palliative Medicine, University Hospitals Bristol NHS Trust; Sue Goodall, Renal Supportive Care Clinical Nurse Specialist, St Barnabus House Hospice, Worthing; Anthony Moffat, Consultant Nurse Hepatology, Derriford Hospital, Plymouth. Lay reviewed by Terry, Mike, Sylvia, Doug, and Anne Lewis.