Empowering dying people is the key to achieving truly person-centred end-of-life care - Compassion in Dying

Posted On: 
30th November 2017

Compassion in Dying wanted to explore some of the barriers that prevent people from receiving the care and treatment that’s right for them, says Chief Exec Sarah Wootton.

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In recent years there has been a welcome shift in the end-of-life sector towards a more person-centred approach to care. ‘Shared-decision making’, ‘choice’ and ‘advance care planning’ have become buzzwords, and it certainly sounds as though a culture change is taking place. Yet according to successive policy reports and feedback from those who use our services, these approaches are not always being implemented effectively, or at all.

As an organisation that informs and empowers people to exercise their rights and choices at the end of life, Compassion in Dying wanted to explore some of the barriers that prevent people from receiving the care and treatment that’s right for them. We spoke to hundreds of dying people, carers and the public via questionnaires, focus groups and in-depth interviews – and found some troubling results.

People reported not being given clear information about their symptoms, prognosis or treatment options. When people did want more information, they didn’t always know the right questions to ask in order to obtain it. Many felt they weren’t always supported to make meaningful choices about their care and treatment. Opportunities to instigate important conversations about future care planning were missed. Where people didn’t feel empowered to make informed decisions about their care, it could sometimes have a direct impact on care quality. When such basic needs are not being met, it is hardly surprising that person-centred end-of life care remains elusive for many people.

One woman’s story stood out to me in particular. 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 explained, “The possible complications had never been mentioned... 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. We were given little bits of false hope which made us believe he could come home when there was no way he could... No one sat me down and gave me information or explained what might happen.”

Compassion in Dying has taken on board insights like Pam’s and developed an innovative new resource, launching this week. The booklet, What Now? Questions to ask after a terminal diagnosis, is designed for people who have received a terminal or life-limiting diagnosis, their carers and loved ones. It contains direct quotes from real people on diagnosis, living with terminal illness, the impact on loved ones and how to make decisions that are right for each individual. It includes suggested questions for a healthcare team, such as ‘What is my outlook for the future?’ and ‘What will happen to me at the very end?’ to help people better understand what might lie ahead.

This new booklet equips people with the tools they need to make informed decisions about their care and treatment. Receiving a terminal diagnosis can be a disorienting and frightening time, but by helping people make sense of their situation and prepare for the future, a resource like this can be a real life line. We must do all we can in this sector to empower terminally ill people to make the choices that are right for them. If we do not, person-centred end-of-life care will remain merely a buzzword, not reality.