Access to palliative care support for care home residents – why it matters…..always

Jenni Burton, Deans Buchanan, Jo Hockley, Alison Strath and Anne Wilson

It’s 2am and a doctor attends to review Elsie. Elsie’s been unwell for over a week and, despite treatment with antibiotics, she’s not improving. Tonight, Elsie became more distressed and is struggling with secretions in her chest. If Elsie was in hospital a doctor would be able to prescribe medications for nursing staff to administer immediately to help relieve the distress and try to reduce the secretions. However, Elsie isn’t in hospital, she is in her own home, a care home, surrounded by staff who care about her. The Out of Hours GP in attendance can prescribe these same medications, but the only way Elsie can receive them is if a member of staff is available to leave the home, having found a community pharmacist who will open their pharmacy out of hours, and collect the prescription. If her home has nurses on-site, they can then administer these as per the prescription, if not, a further call is needed to access District Nurses to attend and administer relief.

The reason for the additional steps in Elsie’s treatment is that it is not possible under current UK law for care homes to hold a stock of anticipatory medications for symptomatic relief apart from on a named patient basis, unless they have a Home Office Licence. So even if the medications are in the home for another resident, they cannot be given to relieve Elsie’s immediate distress. This situation is different from that in hospital and hospices, where all wards hold a stock of key palliative care medications, available to be administered when prescribed.  

Anticipatory prescribing is an established component of Palliative Medicine in the community, hospices and hospital settings, recognised in National Guidelines.[1] It is typically initiated where a clinician determines that a person is in their last weeks or days of life and where predictable symptoms may occur. Usual practice is to prescribe medication for pain, agitation, breathlessness, nausea and respiratory secretions on an ‘as required’ basis, allowing nursing staff to administer these in response to symptoms without requiring a doctor to attend at the time of symptom onset, reducing delays in relieving distress.[2] These medicines are not given routinely and starting doses are low, allowing evaluation of benefit before regular administration is considered. These are often called ‘just in case’ medications which are available, even if they are not needed now. Not all medications are needed for every individual and some individuals will recover after receiving symptomatic treatment, others will die without requiring any symptomatic relief – care is individualised. To be clear, any medication to be administered to a care home resident needs to be prescribed by an independent prescriber – in a care home in the UK this would typically be a GP or advanced nurse practitioner.

Long before anyone had heard about COVID-19, practitioners and researchers in Scotland had highlighted this issue and collated data on the impact it has. Anticipatory prescribing for those in community settings can be initiated in the form of ‘just in case boxes’ which are given to individuals at home for administration by Community Nursing Teams or can be stored in care homes. However, the requirement for these to be only used for a single, named individual, means there is potential for waste – time spent by care home staff confirming individual stocks on every shift and medications which are never required. Elsie’s story highlights the distress associated with delays in being able to respond-to and treat symptoms, when time is precious and comfort is a priority.

COVID-19 is an acute illness, without any curative treatment, whose burden is heavy for those living in care homes. There are many other acute illnesses that bring change of health, change of life and dying. The pandemic situation has brought to the fore some of the challenges staff in care homes face on a daily basis. We welcome therefore the collaborative efforts between the sector, clinicians, policymakers and the Principal Pharmaceutical Officer in Scotland to address these issues. This week saw the launch of a COVID-19 Palliative Care Toolkit, freely available to download from:

This resource provides guidance to support Primary Care, Emergency Departments, Health and Social Care Partnerships, Health Boards, Pharmacy Teams, Community Care and Palliative Care teams to respond to the challenges of COVID-19. This new national guidance specifically addresses support for care homes to access medications, highlighting a broader range of medicines to provide symptomatic relief, increasing access to prescription only medicines and protocolising access to medicines at a national level. Further work is also underway to consider the repurposing of medicines that have been previously prescribed for other residents in care homes.  The aim is to provide a resident with access to the palliative medication that they require when other options to access stock cannot be made in a timely way to meet the individual’s needs. This will be underpinned by a governance framework that includes a risk assessment and decision record recording process to support the ethical and professional decision-making processes. 

Scotland’s care homes provide excellent care to their residents, including in their last days. It is essential that we provide them with all the support we can to access treatment which would be routinely available to individuals in hospital or in hospices, tailoring approaches to meet the needs of all those individual Elsie’s living in our care homes.  

Jenni Burton, SCREDS Clinical Lecturer, Academic Geriatric Medicine, University of Glasgow

Deans Buchanan, Consultant in Palliative Medicine/Lead Clinician, NHS Tayside and Dundee Health and Social Care Partnership

Jo Hockley, RN, OBE, Senior Research Fellow, Primary Palliative Care Research Group, University of Edinburgh

Alison Strath, Principal Pharmaceutical Officer, Pharmacy & Medicines Division, Scottish Government

Anne Wilson, Palliative Care Pharmacist, NHS Forth Valley

[1] [1] National Institute for Health and Care Excellence. Quality Standard [QS144] Care of dying adults in the last days of life. March 2017.

[2] Scottish Palliative Care Guidelines – Anticipatory Prescribing:

Leave a Reply