Everyday there are people faced with the devastating news of a life-changing diagnosis. Whether receiving this news themselves, about a loved one, friend or neighbour — it’s always a difficult situation to be in.

A number of organisations are recognising that those diagnosed with a life-changing condition don’t always feel supported in making decisions about their situation:

• Often people are not provided with an honest prognosis — it can be disguised with euphemisms that make it unclear;
• It isn’t make obvious what options or choices are available to them;
• People don’t know the right questions to ask their doctor in order to find the information they need

Knowing the right questions to ask

In order to plan efficiently for a life-changing diagnosis, people need to be empowered to make informed decisions about their options, their situation, their treatment and their care.

When faced with a life-changing diagnosis in a doctor’s office or a hospital consultation room, research has revealed that people are often not given information about their prognosis or treatment options in ways they can understand. When they want more information, they don’t always know the right questions to ask. Opportunities for conversations about their care and treatment are then missed.

“The professionals involved waited for us to ask questions, but we often didn’t know what questions to ask until it was too late. These were people who had watched many people die, and we needed them to offer more guidance.”

“We never expected the pain he experienced during the last week of his life… The reality was devastating for my husband and it subsequently had a huge and long-lasting effect on me… If we’d been given clear information about what to expect it could have been so different… No one sat me down and gave me information or explained what might happen.”

“What now?”

Compassion in Dying is charitable organisation, working to provide high-quality information and support to people across the country who want to talk openly about their wishes for end of life.

In November 2017, they released “What now?” — a booklet and PDF designed with the input of 600+ survey results to help with questions to ask and information to look for after a terminal diagnosis.

Since its release, “What now?” has received positive feedback:

So how can we take back some some control in what could be the most scary health situations? I was personally really helped by this resource by Compassion in Dying. You don't have to be life-limited/threatened to think through some of these questions: https://t.co/eIeenWW3bf

— @NHS / Ben (@NHS) March 21, 2018

A great new resource from @AGoodDeath created with people with direct experiences #WhatNow https://t.co/gnikdf5V1I

— Alex Sparrowhawk (@birdy_tweet) November 28, 2017

Introducing a digital element

As a paper-based resource, “What now?” provides content and offers ideas for questions to ask, but can we create something that can help answer the questions that so many individuals with a life-changing diagnosis may have?

We’re working with the team at Compassion in Dying to progress the “questions” journey of “What now?”, introduce a digital element with an aim of reaching wider audiences and create a product or service to help people across the country to be more informed about the right questions to ask and find answers to the questions they have.

Following our project alignment to set the vision, a wide range of user groups and key stakeholders have been identified, including:

• Those receiving a life-changing diagnosis;
• Carers; and
• Doctors and other healthcare practitioners (HCPs)

A number of potential risks have also been identified, including:

• Not talking to the right people to understand user needs — those diagnosed with a life-changing condition may not be willing to participate in our research
• No one will use it — is there a need for this service?
• Too much focus on “signposting” to third party content — there are so many useful resources out there, but what if we signpost to something and this information is incorrect? What if this doesn’t answer a question?

These are just some of the risks that we’re bringing into our upcoming discovery phase to keep at the forefront of our research, with an aim of exploring and answering.

Reducing anxiety and facilitating peace of mind

Our main focus is to empower people with knowledge to plan for the progression of their illness to reduce anxiety and facilitate peace of mind.

Presently, we’re not sure what this service is going to look like or “be”. This will become increasingly more informed as we speak with people, stakeholders and subject matter experts over the next few weeks to build up our understanding. But we do know that we’re aiming to solve a big problem — people not knowing the right questions to ask in order to find the information they need when given a life-changing diagnosis.

For this project, we’re looking to speak to a wide range of people. If you have received a life-changing diagnosis or know someone who has and have been affected by this, we’d really appreciate your input and would like to speak with you. Get in touch with Zach Moss, Digital Manager at Compassion in Dying to be involved with our research: zach.moss@compassionindying.org.uk.