Call for papers: palliative and end-of-life care

At the end of its more than year-long inquiry into assisted dying, the Health and Social Care Select Committee concluded that palliative care access and provision is “patchy” for patients across the UK^​1​. 

“It is important that everyone is able to choose what type of support they need at the end of their life, and that their advanced care plan is honoured where possible,” the committee said in its final report, published in February 2024^​1​.

At the time, the MPs called on the government to ensure universal coverage of palliative and end-of-life services, which will be more important than ever if the NHS is to meet the rising demand for palliative care in years to come.

Since the COVID-19 pandemic, the number of people dying at home has increased by one-third and, by 2040, demand is expected increase by between 25% and 47% in England and Wales, owing to the rising number of patients with multiple long-term health conditions, such as cancer and dementia^​2–5​. 

Timely access to medicines in the home in a person’s last year of life is critical for symptom control and reducing distress, but the palliative care system is already struggling under current demand. 

Estimates indicate that more than 100,000 people in the UK who could benefit from palliative care die each year without receiving it, leaving patients concerned^​6​. 

Results from a survey conducted in January 2024, commissioned by the Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care at King’s College London (KCL) and carried out by YouGov, found that 65% of 2,164 UK adults are worried about access to palliative and end-of-life care, with 41% of respondents stating that not enough NHS resources are allocated to palliative care. The results also showed disparities in knowledge about palliative care between white and ethnic minority groups^​7​.

To help improve access to palliative care medicines, the ‘Community pharmacy contractual framework: 2019/2020 to 2023/2024’, published in July 2019, committed to piloting a new service^​8​. This was established through the Pharmacy Quality Scheme in 2023/2024, published in June 2023, which required all contractors to have an action plan in place by 31 March 2024 for when they do not have the required stock of 16 critical medicines for palliative and end-of-life care^​9​.

However, the current context in which community pharmacy is operating — with The Pharmaceutical Journal reporting in March 2024 that a fifth of pharmacies in England have reduced their opening hours to save money — “means people nearing the end of their lives have been added to a growing list of patient groups bearing the brunt of pharmacy underfunding”^​10,11​.

Although pharmacists are trusted by patients and have the medicines expertise needed to supply palliative and end-of-life medicines, the former government made no mention of the profession, and the essential role it can play, in its response to the Health and Social Care Select Committee’s recommendation for universal coverage of palliative and end-of-life services^​12​.

The rate of change for life-limiting illnesses varies greatly between patients, and therefore palliative care needs are usually unpredictable, not helped by the sometimes lengthy and burdensome access to vital medicines^​13​. This undoubtably causes distress to patients and carers, especially during such difficult and emotional times. 

As our PJ Pod episode on end-of-life care highlighted in June 2023, if patients cannot not access medicines easily and quickly, and do not understand how to use them, there are knock-on effects for the rest of the NHS system — such on as A&Es and increased emergency admittances to hospital^​14​.

Several new models for end-of-life service delivery are currently in operation^​14,15​, but there are several system problems that, when combined with patient factors, currently impact care, including:

• Access to patient records is not universal to provide prescriptions safely^​16​;
• There is a variable local set-up and therefore a lack of awareness of the services that are available. Access to prescribers and community pharmacies that are well stocked with relevant medicines and where pharmacists have good relationships with rest of the primary care healthcare team, patients have a better experience^​13​;
• The operating context makes things more difficult. Medicines shortages and supply problems make it difficult to manage stock^​17​;
• Use of anticipatory prescribing is important, including just-in-case boxes; however, sometimes these are never used leading to waste and there are potential risks around diversion^​18​.

Pharmacists and pharmacy teams are vital in the support of patients and their families managing a terminal illness. In every healthcare setting, pharmacists can offer a wealth of information on the safe and effective use of their palliative medicines, ensuring patients can have the best quality of life in their final days.

That is why The Pharmaceutical Journal would like to invite any UK pharmacy professional to let us know what they are doing in their local area to improve access to palliative and end-of-life care. 

We are keen to gather your opinions, examples of service delivery and best practice to understand more about the challenges you and your teams face when providing this care for patients, their families and carers. We would also be interested in hearing from you on the practical, educational materials that you would like us to create or if you have an article you would like to submit in response to this call.

If you have anything you would like to write about, or you just want to submit some ideas on what you would like us to cover, see the box below.

We want to push forward the conversation on palliative and end-of-life care in the hope that universal access can become a reality in the near future. PJ