End of life care for patients must improve, doctors group says

Doctors are calling for a public campaign on end-of-life care and a national strategy on how such care for dying people can be delivered.

It comes amid a warning that too often this phase of someone’s life “is seen as unexpected or a last-minute crisis” despite the person being ill and already in hospital or another care setting.

The Royal College of Physicians (RCP) said currently focus remains on treatments to cure patients, despite many having progressive life-limiting conditions including those who are frail or elderly, and called for “important cultural shifts” in healthcare and wider UK society around palliative and end-of-life care.

RCP clinical vice president Dr Hilary Williams described anticipating the end of someone’s life as “an act of clinical courage and kindness”.

Referring to previous research, the college said approximately 70 per cent of people die “from long-term health conditions that can follow a predictable course, with death anticipated well in advance of the event”.

They said that despite this, “patients and their families often feel unprepared for the end of life” and argued patients who are in their final months of life “can benefit from open supportive conversations that help them to recognise this and may result in a change in approach to their treatment and support”.

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The college said the Government must develop a public campaign on end-of-life and palliative care; support a professional campaign to improve education, recognition and delivery for end-of-life care; and commission a national strategy for end-of-life and palliative care including staff training.

The college warned there are “significant barriers, including challenges in social care, and the imbalance of funding and workforce in healthcare”.

Dr Williams said “we can and must do better” on end-of-life care, warning that too often recognition that someone is approaching the end of their life “happens only in the final days or weeks, and often in acute care settings”.

She said: “Real change will only come when we value continuity of care, the involvement of experienced decision-makers, and we can give clinicians the time to have honest conversations with patients and families about what lies ahead.

“After all, anticipating the end of life is an act of clinical courage and kindness. As treatment options expand, knowing when to start or stop an intervention, when to investigate or when to focus on quality of life, is becoming more complex.

“These are hard-won skills rooted in expertise and experience – the system must learn to value them.”

Supporting the college’s calls, Dr Nick Murch, president of the Society for Acute Medicine, said that “too often, this (end of life) phase is seen as unexpected or a last-minute crisis”.

“With the right support and planning, we can ensure more people are able to die in comfort, in a place of their choosing, and with dignity,” he added.

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Dr Suzanne Kite, president of the Association for Palliative Medicine, said: “We urgently need a national strategy to ensure that everyone has access to the high-quality palliative care that they need, wherever they are, as early as necessary, around the clock.

“Opportunities for patients, families and professionals to talk honestly about what matters in the final months and weeks of life must be embedded in care, and we need systems, training and public conversations that support this.”

Palliative care and bereavement charity Sue Ryder backed the RCP call, saying “while end-of-life care makes a hugely positive difference to people who are actively dying, palliative care providers, like Sue Ryder, could be helping people to live as well as possible, for as long as possible”.

The charity added: “Around 8 per cent of the people referred to our hospices die before they can be admitted, suggesting that referrals are made too late.

“Healthcare professionals should be thinking about how palliative care can benefit their patients from the moment they receive a terminal diagnosis, not just the last few days of life.”

A Department of Health and Social Care spokesperson said: “We want a society where every person receives high-quality, compassionate care from diagnosis through to the end of life.

“As part of our 10 Year Health Plan, this government will shift more healthcare out of hospitals and into the community, and the palliative care and end-of-life care sector, including a well-informed specialist and generalist health and care workforce will play a big role in this shift.

“This government is looking at how to improve the access, quality and sustainability of all age palliative care and has invested £100 million, the largest investment in a generation, into hospices to provide better care.”

The RCP said this position statement on end-of-life care is separate to its stance on the assisted dying Bill.

The college has previously highlighted “concerning deficiencies” about aspects of the Terminally Ill Adults (End of Life) Bill, which is expected to come before the House of Lords for debate when Parliament returns from recess.

Following the Bill’s passage through the Commons after two major votes by MPs in November last year and June, the college said concerns remained “including safeguards for vulnerable patients, equitable access to care, clinical responsibilities and the need for complex decisions to be made by multidisciplinary teams, and the potential impact on the doctor-patient relationship”.

The college said these all “require further consideration” and urged peers in the Lords “to address these issues to ensure the Bill includes robust protections for both patients and healthcare professions”.