Getting a terminal diagnosis

When a person receives a terminal diagnosis it can create a wide range of emotions for them and you as their family carer. You and the person may feel angry, may feel it is unfair, may feel sad, shocked, or in denial. 

Living with a terminal illness can sometimes make family relationships difficult, but it can also bring you closer together.

The doctor and healthcare team should be honest with the person and you as their carer about what the diagnosis means, the prognosis, and what the treatment options are. This includes explaining any medical terms in plain language. They should give all the information the person needs to make a decision about treatment and explain the advantages and disadvantages of each treatment option, including any potential risks and side effects.

The doctor can recommend treatment but should not pressure the person to accept it. The doctor should also discuss the impact of the diagnosis on emotional wellbeing and lifestyle as well as any warning signs to look out for and what to do if anything unexpected happens.

1. As it is difficult for you and the person you care for to absorb information in one go, tell the doctor if either of you wants to go over something again. If you don’t understand something then ask it to be repeated or explained in a different way.
2. Ask for a follow up appointment to address the questions you or the person you care for forgot to ask. Help the person make a list of questions beforehand and help them take notes whilst you are there. Compassion in Dying has published a booklet (PDF) of questions you may like to ask after a terminal diagnosis. 
3. Ask the doctor to explain things by using statistics and facts. For example ‘what percentage of people with this illness lives for five years?’. It’s possible that the doctor may not have a precise answer to a question you ask. If they reply ‘it depends’ check this out by asking directly‘ is there no definite answer’?
4. Get all the information you can about the person’s diagnosis, prognosis, possible treatments, and ongoing care needs. If you are going to be caring for the person you need this information to care safely and appropriately. You may have to press for this information but be brave. Ask about side effects and how this might impact your caring role.  
5. Don’t automatically assume information is shared between the NHS, hospice, or care home. Talk to the person you care for about the importance of giving consent to share information (if they have mental capacity to consent) and check information has been passed between professionals.
6. Ask about any training that might be available to help you with your caring role.