The Royal College of Physicians (RCP) has published a new issue of Future Healthcare Journal (FHJ), bringing together expert perspectives on palliative care, communication and how clinicians can better support patients at the end of life.
Guest edited by author, physician and campaigner, Dr Kathryn Mannix, this issue includes a powerful themed article in which she explains that ‘death is inevitable, but dying badly, without dignity or preferences respected, should never be acceptable.’
She calls for a fundamental change in how the UK health system recognises, talks about and plans for dying, warning that failure to do so is causing avoidable harm to patients, families and staff.
One key theme is that communicating about dying must become a core clinical skill and should be prioritised during medical training. ‘There is a culture of avoidance of discussion of dying in hospital-based NHS healthcare,’ Kathryn writes, describing how this creates a ‘hidden curriculum’, where clinicians are not supported to have open, compassionate conversations with patients and families.
The consequences, she argues, are significant, as too many people reach the end of life without having put clear plans in place, had honest conversations with their loved ones, or been given access to timely palliative care. ‘It results in late recognition of dying, lost opportunities for dying people to re-order their priorities, late referrals for palliative care support and missed chances to improve quality of life at an earlier stage,’ she says.
Key learning points
- Failure to plan is causing preventable harm: Too many people reach the end of life without clear plans, honest conversations or access to timely palliative care.
- Patients want honesty: End-of-life care is being undermined by a failure to recognise and talk about dying early enough. In fact, late recognition of dying leads to poorer patient experience.
- Avoiding conversations about dying makes things worse: Too many conversations about dying happen too late or not at all. Honest, compassionate conversations reduce fear, improve understanding and support better decision-making.
- High intervention deaths are not inevitable: Palliative care is too often introduced late, reinforcing misconceptions rather than improving quality of life earlier in illness.
- Communication about dying is a core clinical skill: It must be prioritised in medical education – too many doctors currently many lack the training and confidence to talk to patients about dying.
- Staff are paying the price too: System pressures – including time constraints and lack of continuity – are contributing to poor-quality conversations at critical moments.
- A call for leadership and investment: A cultural shift is needed across healthcare and society to normalise dying and improve both professional and public understanding.
Dr Calvin Lightbody and Dr Derek Willis highlight the consequences of late or absent anticipatory care planning, particularly during acute deterioration: ‘Dying without a plan causes avoidable harm. Never events exist to stop preventable suffering – and failing to plan at the end of life does exactly that.’ Unrealistic expectations, often fuelled by cultural narratives of ‘fighting’ illness, can drive unnecessary escalation at the end of life, Dr Sophia Henderson, Dr Calvin Lightbody and Professor Mark Taubert explain, and when a conversation turns towards care at the end of life, families can sometimes feel shocked because clinicians have not prepared them for a realistic outcome.
In one powerful patient narrative, Mark Taylor, who lives with motor neurone disease, explains that patients value clear, compassionate conversations about dying far more than clinicians often assume, saying that ‘I just saw (the advance care plan) as a very practical way of expressing my wishes so that my decisions couldn’t be questioned. That would have saved the stress and worry of my family.’
Drawing on clinical evidence, patient experience and frontline testimony, the latest FHJ issue also showcases innovative approaches to improving communication and understanding in palliative care.
In Changing practice through the art of palliative care – an infographic guide, Dr Tony Duffy and Dr Monica Lalanda use visual storytelling to challenge misconceptions and support better clinical conversations. They write: ‘When someone is “sick enough to die”, we should explore this with them honestly, even when offering one more treatment feels like the easier option.’
They emphasise the importance of early and proactive involvement of palliative care services: ‘Involving the palliative care team in a timely manner can improve quality of life and treatment outcomes. It can also reduce the distress associated with a sudden transition to palliative care.’
Their work also challenges common misconceptions about palliative care: ‘Palliative care is poorly understood by the public (and often by our own medical and health care professional colleagues).’
Professor Mumtaz Patel, president of the Royal College of Physicians, said:
‘Too often, conversations about dying happen too late or not at all. This issue of Future Healthcare Journal highlights why that must change, and how we can better support patients, families and clinicians to have honest, compassionate discussions about what matters most. Palliative care is not about giving up. It is about making life as good as possible, for as long as possible. Improving care at the end of life is not just about clinical decisions. It is about communication, confidence and culture. As physicians, we have a responsibility to recognise when patients may be approaching the end of life and to ensure they are supported with dignity, clarity and compassion.’
Together, the articles in this issue call for a shift in culture across healthcare – one that supports clinicians to recognise dying earlier, have honest conversations and provide care that is aligned with what matters most to patients and their families – because as Kathryn Mannix explains, ‘For as long as the process of dying remains hidden, ignored and not spoken of, it will conjure fear and generate avoidance in a self-perpetuating cycle.’
FHJ is a peer-reviewed RCP journal. It has editorial independence and the views expressed by journal article authors are not necessarily the views of the RCP.