Category Archives: Conversations

What now? Conversations after a terminal diagnosis

“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_publication_1

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.

Download or order a copy for yourself or the people you support.


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.

Achieving Personalisation for People Affected by Dementia

With the NHS Five-Year Forward View and the Care Act driving the personalisation agenda into the mainstream, there is an increased need to focus on how to achieve this meaningfully and consistently in the context of budget cuts and other pressures.

Whilst many recognise the benefits of personalisation, there is still work to be done in making it real for people and we hope that this tool can help provide consistency in the approach used by professionals involved in care and support planning for people affected by dementia.

Progress front coverThis tool can be used by anyone organising individual support packages. It highlights good practice and shows areas where possible improvements are needed, while acknowledging that people and organisations won’t all be starting from the same place.

By adopting a ‘no blame-no excuse’ approach, the tool can be an unthreatening way for staff and teams to explore their current practice against practical benchmarks and find ways to improve their performance incrementally.

People with dementia consistently tell us that they want choice and control over decisions about them, for services to be designed around them and to feel valued as part of a community. We know that person-centred conversations lead to better individual outcomes and we hope the practicability of this tool can lead to transformational change across the dementia landscape.

Personalisation is at the heart of what Alzheimer’s Society do and within my team in particular, we are working to achieve this for people affected by dementia.  We are committed to modeling our own practice around the approaches detailed here. Through our partnerships with local authorities, CCGs and other organisations we will seek to ensure all people affected by dementia get the best care and support available to deliver what is most important to them.

C4CC Launches New Care and Support Planning Tool

One of the core aims of the Coalition for Collaborative Care (C4CC) is to ensure care and support planning is a mainstream activity and I hope that the launch of our new planning tool will make a real contribution to making that happen on the ground.

Progress front coverIt is vital that people with long-term conditions have the opportunity to have a conversation about what matters to them and to be seen as an equal partner in their care by those supporting them, in health and social care.  Many of our partners and co-production team have evidence and stories about the positive difference the right conversations can have on people’s wellbeing, in achieving the outcomes that are important to them and on their confidence in taking control of their own health.

C4CC wants care and support planning to be available to everyone with a long-term condition and not just the “lucky few.” This tool has the potential to ingrain this best practice across the entire health and social care sector, providing organisations with a baseline starting point and the ability to continually assess their progress.

The toolkit has come about as a result of extensive work with C4CC partners such as the Alzheimer’s Society and Royal College of GPs, because they recognise the value of those conversations in achieving a better deal for people with long-term conditions.  This partnership approach will also be vital as we look to make its use widespread and bring about the system change we are all so passionate about.

In the coming year we will be continuing to deliver training, development and awareness raising sessions around better conversations, using the strength and breadth of our networks to build this movement for change.  Please get in touch by emailing if you want to collaborate with us to help us keep up the momentum.