As legislation passes through Westminster and Holyrood, campaigners have highlighted the need to close gaps in end-of-life services and have called for policy change to ensure dying people have more choice and control in their final days and weeks.
The impact is already clear to see. After Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill passed its Second Reading in the House of Commons last November, the Government announced the biggest investment in hospices in a generation, a total of £126 million to support Labour’s commitment that every person has access to high-quality end-of-life care when they need it. We are also seeing the beginnings of a culture shift, as the potential change in the law brings more open and realistic discussions about dying well into the public consciousness and helps to normalise planning for the end of life. Across the country it has become more common for people to discuss their wishes with family members, a practice that is closely associated with better quality of care in the final weeks of life.
End-of-life issues can pose challenge for the pharma industry policy, advocacy and communications teams, who are used to championing guideline implementation and access to treatment. Paradoxically, despite the UK’s internationally low and slow access to medicines, dying people often find themselves over-treated. Polling by the charity Compassion in Dying found that one in four people said they had a close relative or friend who died from a short or long term illness who had received medical treatments they would not have wanted. As the Chief Medical Officer wrote in 2023, over-treatment is as inappropriate as under-treatment and improving quality of life can sometimes mean “less medicine, not more”.
First, policy, advocacy and communications teams can address a profound unmet need by ensuring that efforts to champion shared decision-making between patients and healthcare professionals include end of life considerations. While current law, policy and guidance emphasises the importance of shared decision-making, the healthcare system needs to change to make it routine. These changes might include:
Second, industry can continue to champion the specific needs of dying people in reimbursement decision-making processes. In 2022, NICE replaced its end-of-life criteria with a new ‘severity modifier’ intended to raise the QALY threshold for medicines for the most severe conditions. The result has been a travesty for some terminally ill people, with metastatic cancers being classified by the officials as only ‘moderately severe’. Ministers have been left in the invidious position of defending the bureaucratic decision that incurable cancers with no remaining treatment options are not highly severe – a position that’s likely to be at odds with the patient community and the wider public. Without further reform of the system, many innovative treatments for advanced disease will be out of reach – either because they will be rejected by NICE, or because industry will conclude there is no viable reimbursement pathway in the UK and decline to launch here.
Third, the need for industry to innovate to meet unmet medical need is clear. Every year, over 7,000 British people die in pain that cannot be relieved by the highest standard of palliative care – equivalent to 20 people a day. In addition to uncontrolled pain, dying people can experience a range of distressing symptoms that require careful assessment and management such as breathlessness, constipation, fatigue, nausea, vomiting, dry mouth, and cough. It is only through advances in medical science, so often driven by the creativity of the life sciences industry, that new approaches to pain management and improved options to manage other symptoms will be brought to patients.
Pharma policy, advocacy, and communications teams have a critical role to play in ensuring that people at the end of life receive care that aligns with their needs, values, and preferences. Whether through championing shared decision-making, advocating for fairer reimbursement processes, or driving innovation in symptom management, the sector should not shy away from these complex but vital conversations. By leaning into end-of-life care as a priority, pharma can help shape a future where every patient—no matter how advanced their illness—has access to the right care at the right time.
