If your health has changed, or you‘re coming to terms with a recent diagnosis, you may need to start thinking about your treatment and care – this can feel daunting and you may not know where to start.

Compassion in Dying has created a new booklet What now? Questions to ask after a terminal diagnosis to help you ask the right questions, get the information you need, and make the decisions that are right for you.

We talked to more than 600 people living with a terminal illness or caring for someone at the end of life. We asked them how they accessed information, who they spoke to about their options, and crucially, what they wished they’d known at the time.

The people we spoke to said that when they asked the right questions about their illness, it helped them to make informed decisions. This meant they were able to have the care and treatment that was right for them, and to live well in the time they had left.

Our choices were supported and we were prepared to make the necessary decisions, but that was because we had thought and talked about it. We knew the questions to ask and that’s important

Other people’s thoughts and experiences

What Now? shares these experiences and includes information about how it feels to receive a diagnosis, what it’s like to live with an illness, the impact your illness can have on family and friends, and other practical advice on things to get organised now.

We were not prepared for the exhaustion terminal illness brings. Put energy into making decisions, and arranging your care as early into the process as possible because further down the line you may not be able to.

Questions to ask

It also includes information about who you can talk to about your health, and a list of questions that can be removed and taken to appointments – so you can decide want you want to know, and how to ask.

You might need to push for what you want to happen. You don’t have to accept what your medical team think is best for you.

If you want to stay in control of your health and need support to find information and ask questions, What Now? can help.

DOWNLOAD A COPY

To talk to us about how to use this booklet, or how to consider your options with your family or healthcare team, call our free Information Line on 0800 999 2434.