Perspectives
Reflections on palliative care, dying and human dignity.
The Gold Standards Framework — Identifying Who Needs Palliative Care
One of the most influential contributions from British palliative care is the Gold Standards Framework (GSF), developed by Dr Keri Thomas in the early 2000s. Its core question is deceptively simple: "Would you be surprised if this patient died in the next twelve months?" If the answer is no, the patient likely needs palliative care — even if no one has said so yet.
The GSF brought palliative thinking into general practice and community care, not just specialist units. It introduced prognostic indicators, needs-based coding and structured team meetings — tools that help clinicians recognise the transition from curative to palliative care before it becomes a crisis.
In Sweden, we have our own frameworks, but the GSF insight remains powerful: early identification changes everything. When we recognise that a patient is nearing the end of life in time, we can have the conversations that matter, align care with wishes and avoid unnecessary hospital admissions. The alternative — reacting only when the crisis arrives — serves no one.
Lessons from the Liverpool Care Pathway
The Liverpool Care Pathway (LCP) was developed at the Royal Liverpool Hospital and Marie Curie Hospice in the 1990s to bring hospice-quality care to hospital wards. Its intention was good: a structured guide for the last days of life — symptom management, discontinuing futile treatments, supporting families, dignified care.
But the LCP also became a cautionary tale. When it was rolled out without adequate training, without proper clinical judgment, and sometimes without clear communication with families, it was perceived as a pathway to hasten death rather than ease it. The Neuberger Review of 2013 recommended its phasing out — not because the principles were wrong, but because implementation had failed.
The lesson is one that Kierkegaard would have recognised: a framework without human presence is empty. No checklist replaces the clinical eye, the careful conversation, the willingness to sit with uncertainty. The principles behind the LCP — comfort, dignity, communication — remain essential. But they must be lived, not merely ticked.
Cicely Saunders and the Revolution of Total Pain
When Dame Cicely Saunders opened St Christopher's Hospice in London in 1967, she did not merely found an institution. She launched a revolution in how medicine understands suffering. Her concept of total pain — the recognition that a dying person's pain is simultaneously physical, emotional, social and spiritual — challenged the biomedical model at its core.
Saunders was uniquely equipped for this insight. Trained as a nurse, a social worker and finally a physician, she understood that no single discipline could address the whole person. A patient writhing in pain might be suffering not only from tumour progression but from fear of the unknown, grief for a life unlived, worry about a spouse left behind or a crisis of meaning.
Her approach was empirical and compassionate: she listened to patients, recorded their words, took their experiences seriously as clinical data. "You matter because you are you," she wrote. "You matter to the last moment of your life, and we will do all we can not only to help you die peacefully, but also to live until you die." This remains the most succinct statement of what palliative care aspires to be.
The Six Ambitions — England's Framework for End-of-Life Care
After the Liverpool Care Pathway was withdrawn, England needed a new vision. The result was Ambitions for Palliative and End of Life Care (2015, refreshed 2021) — a framework built not around clinical pathways but around six person-centred ambitions:
Each person is seen as an individual Each person gets fair access to care Maximising comfort and wellbeing All staff are prepared to care Each community is prepared to help
What makes this framework compelling is its shift from protocols to principles. Rather than prescribing what to do at each stage, it describes what good looks like from the patient's perspective. The sixth ambition — community preparedness — is perhaps the most radical, recognising that end-of-life care cannot be left to professionals alone.
In my own practice, these ambitions resonate deeply. Every patient is an individual with their own story, preferences and needs. Fair access means reaching those who fall through the cracks — the elderly at home, the immigrant with no family nearby, the person whose GP hasn't asked the surprise question. Coordination means not just meetings but genuine collaboration. And community preparedness means helping families and carers feel capable, not abandoned.
Advance Care Planning — Conversations Before the Crisis
The UK's National Institute for Health and Care Excellence (NICE) and programmes like Dying Matters have championed advance care planning as a cornerstone of good palliative care. The idea is straightforward: have the important conversations while the patient can still participate, not when crisis forces decisions onto unprepared families and clinicians.
Advance care planning asks: Where do you want to be cared for? What matters most to you? Are there treatments you would not want? Who should speak for you if you cannot speak for yourself? These are not bureaucratic questions — they are profoundly human ones.
Research consistently shows that patients who engage in advance care planning are more likely to receive care aligned with their wishes, less likely to undergo unwanted interventions and more likely to die in their preferred place of care. Their families report less distress and fewer regrets. It is, in Kierkegaard's terms, the ultimate act of meeting someone where they are — and walking with them towards what comes next.
Dying at Home — Aspiration and Reality
Surveys consistently show that most people, when asked, would prefer to die at home. Yet across Europe, the majority still die in hospitals. This gap between aspiration and reality is one of palliative care's most persistent challenges.
England's investment in specialist community palliative care — through Marie Curie nurses, Macmillan support, hospice at home services and rapid response teams — has shown that home deaths are achievable when systems are designed around them. Sweden's ASIH (advanced home care) teams pursue the same goal: bringing specialist-level palliative care into the patient's own living room.
But "dying at home" is not a universal good. Some homes are not safe. Some families are not coping. Some patients change their minds. The goal is not home death as ideology, but preferred place of care as practice — and that requires listening, reassessing and being willing to change course.
In my consultancy work, I support home care teams with the medical complexity that can arise in the last days — symptom crises, medication adjustments, conversations when the plan no longer holds. The aim is always the same: care that follows the patient, not the other way around.
