Although discussing serious illness, potential death and dying is difficult and sad, it is recommended that a person with advanced liver disease revise and review his or her wishes at the end of life with family and health care professionals. You also may revise your goals and plans as your circumstances or preferences change.
Starting the planning conversation early strengthens your relationship with both your family and the health care team. For many people, worrying about what will happen to their surviving family members is difficult. Planning ahead to settle legal, financial, and business affairs also allows you and your family to concentrate on the emotional and treatment aspects of your illness and its effect on your family.
Making your plan includes locating and organizing important legal and financial documents, such as your will, marriage and birth certificates, social security card, insurance policies, bank statements, and investment summaries. If you have complicated finances or are concerned about leaving your family with high medical bills or debts, consider talking with a financial advisor or social worker. Financial professionals cannot eliminate bills or debts, but they will help you sort out your finances and lessen the stress of financial worries for you and your family. The more your family, friends and professionals in your life know about your wishes, the more likely your wishes will be carried out.
An important step for many is to create, or perhaps make changes to, an advance directive. An advance directive is a legally binding set of instructions that explains the kind of medical treatment you want and do not want if you become unable to make those decisions for yourself. Your caregivers will need to have access to your medical records and to speak to your medical professionals. In the USA you will need to complete a "HIPAA Release" for this to happen. The Health Insurance Portability and Accountability Act of 1996 (“HIPAA”) was designed to protect your rights to privacy, which extends to everyone beyond yourself.
This page has been readily adapted from Cancer.Net, "Oncologist-approved cancer information from the American Society of Clinical Oncology".