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To deliver truly person-centred end of life care we must listen to the real experts: dying people

Author: Dame Barbara Monroe
06 December 2017

Dame Barbara Monroe joined St Christopher’s Hospice in 1987, and was Chief Executive there between 2000 and 2014. She has written extensively about the psychological and social aspects of palliative care and sat on many national committees supporting the strategic development of end of life care. In 2010 she was appointed Dame Commander of the Order of the British Empire. Here she writes about the importance of listening to dying people to deliver the best possible care.

During a long career in hospice care I often witnessed dying individuals and those close to them find confidence through the compassion and support provided by their health and care professionals. They felt listened to, were provided with the information they needed to consider what was important to them and given the appropriate support to act upon it. It is a matter of regret that many also spoke about how different things might have been had they received such help sooner.

The end of life sector has emphasised the importance of person-centred care for a number of years now and I wholeheartedly welcome this shift. Yet we know from successive policy reports and feedback from people at the end of life that this concept is not always being implemented effectively on the ground. Demographic, social and economic changes mean that increasing numbers are dying undignified and sometimes lonely deaths, with unmanaged symptoms, preferences and priorities neither sought nor respected and families and friends left unsupported and overwhelmed.

To examine why people are still failing to receive truly person-centred care at the end of life, we have to speak to the real experts: dying individuals and those close to them.

Compassion in Dying, a charity which informs and empowers people to exercise their rights at the end of life, and of which I am a trustee, has done just that. They consulted with over 600 dying people and their carers through questionnaires, focus groups and in-depth interviews. Their research indicates that many people are not being given clear information about their condition, adequate support to make care and treatment decisions, or sufficient opportunities to discuss their future care. We cannot expect to deliver person-centred care when these basic needs are not being met.

Using the authentic voices of those who contributed to their research, Compassion in Dying has developed a new booklet which aims to address some of these barriers by empowering dying people to make the decisions that are right for them. What now? Questions to ask after a terminal diagnosis’ is designed for people who have received a terminal or life-limiting diagnosis, their carers, families and friends. It contains differing experiences and insights from real people about diagnosis, living with terminal illness and its impact on others. It empowers people to ask questions and discover the information they need to make informed decisions about their care and treatment that allow them to live as well as possible in the time they have left.

This publication will be of significant benefit to people who have received a terminal diagnosis – arming them with the tools they need to make end of life decisions that are right for them. But it  can also be of great value to the health and social care professionals supporting them. It gives an insight into what some of those we seek to help may be thinking about. We can use it to reflect on whether we really are providing enough clear information, answering questions (whether voiced or left unsaid) and adequately preparing people for what might lie ahead. 

We cannot expect those we care for to make considered decisions if we are failing to listen respectfully. We must encourage them to voice their questions and concerns so that they can equip themselves with the facts they need to make the right decisions for them. It is only then that we can deliver truly person-centred care at the end of life.

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