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13 July 2023

Systemic and cultural change urgently needed to put dying people in control of their end-of-life care

Our response to Healthcare Safety Investigation Branch ‘Variations in the delivery of palliative care services to adults’ report.

Compassion in Dying was pleased to contribute our research and expertise to the Healthcare Safety Investigation Branch’s (HSIB) report ‘Variations in the delivery of palliative care services to adults’, released under embargo until Thursday 13th July 2023. Our statement below.

Usha Grieve, Director of Partnerships and Information at Compassion in Dying, said:

“Too often we hear experiences on our information line that mirror the HSIB’s findings. People tell us they feel powerless, that they are forced to spend precious time and energy fighting to be seen and heard, that they struggle to get the care, pain relief or symptom management that meets their needs.

“These problems are not new, as the HSIB rightly acknowledges, and workforce pressures, strained services and a postcode lottery of provision are undeniably major contributing factors. But addressing funding and capacity is only one part of the puzzle. Systemic and cultural change is urgently needed.

“As the HSIB highlights, Compassion in Dying has long called for a public awareness campaign to reframe conversations around death and dying – a recommendation echoed by the Care Quality Commission. People need to understand what they can ask for and what good care looks like. Their right to make informed choices should be championed, with support to record and revisit their wishes. This way everyone is on the same page about what matters most to that person.

“The barriers to accessing adequate palliative and end-of-life care must also be addressed. Many people want to die at home, but this is not always a proxy for dying well. People often struggle to get an appropriate referral for community support, with access to pain relief and symptom management sometimes non-existent. Timely and personalised planning with access to the right support is therefore essential, without families feeling they have to push and fight for it.

“The driving force behind all of these improvements must be to put the dying person in control of decisions about their care, because there is no one better to make them.”


For further information, case studies and interviews with Compassion in Dying spokespeople, contact Molly Pike, Media and Campaigns Officer at Compassion in Dying, on 07929 731181 or email:

About Compassion in Dying

Compassion in Dying is a national charity that supports people to start honest conversations about death and dying, and record and revisit their wishes whenever they want to. We amplify people’s voices, shift attitudes and drive changes to the healthcare system, so people’s end-of-life decisions are heard, understood and respected when it matters most.

We want people to be in control of their end-of-life decisions because there is no-one better to make them.

Any questions? Our specialist nurse-led team is available to help from 11am to 3pm, Monday to Friday. Call for free on 0800 999 2434.

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