“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.”
Pam, aged 60 from Cheshire, lost her husband Bill to heart failure in 2013. They had managed his heart disease and related illnesses fairly well for many years and were led to believe that Bill’s death, when it eventually came, would be peaceful, painless and at home. But when it did come, they were woefully unprepared and left unable to make the choices that were most important to them.
Pam was just one of the hundreds of people Compassion in Dying spoke to who are living with a terminal illness or caring for someone at the end of life. We wanted to understand what it is like to live with terminal illness, what are the challenges and how can they be overcome, and what advice people would give to others in similar circumstances.
People told us that they were often not given information about their prognosis or treatment options in ways they could understand. When they wanted more information, they didn’t always know the right questions to ask. They told us that opportunities for conversations about their care and treatment were 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.”
In response we developed What now? Questions to ask after a terminal diagnosis to help people find the information they need and ask questions, so that they can make informed decisions about their treatment and care – helping them to live well in the time they have left.
What now? includes insights from people living with terminal illness, or caring for someone at the end of life. It shows the range of feelings, responses and questions that people can have, and how differently people experience receiving a terminal diagnosis.
People told us that having honest conversations with their families and healthcare teams helped them to understand what to expect, and to make the decisions that are right for them. They also told us that what they wanted to know could be forgotten in the moment, perhaps because the information is hard to take in, or because the conversation goes in a different direction.
What now? includes ‘tear out’ pages with questions people have told us they wanted to ask, so that others can ask them when having conversations with their health and care team. They span all aspects of living with terminal illness, and include questions like:
- Can my family members be involved in decisions?
- What kind of changes will I have to make in my work, family life, sex life, and leisure time?
- What are the best things I can do to stay as healthy as possible?
We hope that What now? will encourage meaningful conversations between people living with terminal illness, their carers and their health and care teams.
Written by Natalie Koussa
Natalie is Director of Partnerships and Services at Compassion in Dying, a charity that works nationally to support people to consider their wishes for the end of life, and to plan ahead to ensure what matters to them is known and can be followed.