Can 鈥榣ay carers鈥� help more at the end of life?

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Most people in the UK who are dying would prefer to be looked after at home. Health care professionals try to enable this to happen. A new research project led by 91快活林 is investigating one way to make this a reality for more people.

Home care is usually provided by District Nurses, working with many other team members including general practitioners, hospice doctors and nurses, and Macmillan or Marie Curie services. Family members are taught how to care for their loved one, and generally call a District Nurse if there are difficult symptoms. As people get weaker in the last few weeks or days of life, they become unable to swallow. At this point, a syringe driver is set up to give medicines under the skin over 24 hours. While this often relieves most symptoms, some symptoms may break through and need extra doses of medication (called 鈥榖reakthrough鈥� symptoms). Then, the family usually call in the district nurse who can give extra doses of medicine as injections. But, this can take a long time, often more than an hour. The wait can be distressing for the patient and their carers, who then feel powerless to help. Usually, family care would not include giving injections for these breakthrough symptoms, even though this is legal and practical.

91快活林 is working with partners in Cardiff University and Gloucester NHS Trust, to research whether lay carer role extension to give these 鈥榓s needed鈥� injections should be more widely adopted or not in the UK.

As Prof Clare Wilkinson, who co-leads the research from the College of Health & Behavioural Sciences' Institute for Health and Medical Research explains:

鈥淚n some countries, like Australia, carers are trained to give symptom-relieving medicine to their dying relatives at home. We are working with a team from Brisbane, who have 30 years鈥� experience of this. We cannot be sure that this approach would be welcomed in the UK, so we need to test it out. When there is uncertainty, the best way to resolve it is to do a randomised controlled trial (RCT). This is a test where, at random, half the patients get 鈥榰sual care鈥� and the other half the 鈥榥ew care鈥�.鈥�

We hope to conduct a RCT comparing injections given by carers to dying patients looked after at home (the new care) versus HCP-given injections (the usual care). Before doing a large trial, it is good practice to first test the feasibility in a smaller group of patients. Information from this feasibility study will help us to understand if a large trial, to give a final answer, is possible.鈥�

Baroness Ilora Finlay, a leading authority on end of life care, who chairs the National Council for Palliative Care and the Implementation Board for the Palliative Care Strategy in Wales welcomed news of the new research saying:

鈥淲hen a person is at home, their family carry to responsibility for care 24/7, having to decide when and who to call if help is needed. To have to wait for someone to arrive to give an extra dose of medication can be very distressing. This is very important project to assess the benefits and highlight any problems that need to be addressed for this to be rolled out widely.鈥�

Dr Marlise Poolman, Clinical Senior Lecturer and Consultant in Palliative Medicine, 91快活林 and Betsi Cadwaladr University Health Board, who co-leads the project explains:

鈥淔irstly, we will ensure that everyone understands it is legal for carers to give symptom-relieving injections to dying patients as long as they are supported to do so. Our Australian partners have a time-tested education package: we will ensure this is reworked for UK patients, carers and HCPs. We will hold workshops to do this, and decide how best to explain the study to carers and patients.

Then we will ask patients and their carers whether they are willing to be randomised to 鈥榰sual care鈥� or 鈥榥ew care鈥�. Carers in the 鈥榥ew care鈥� part will be trained how to recognise symptoms, to give injections and then see if they work to relieve the symptom. Carers in the 鈥榰sual care鈥� group will be asked to call a HCP if their loved one has breakthrough symptoms. Carers in both parts will be asked to keep a diary of symptoms and treatments. They will be invited to talk about how they found the study and the experience of giving injections.

We have discussed our study with patients, carers and HCPs. They are greatly in favour of it and have given us their views, particularly with regard to the things we should measure. Two members of the study team are bereaved carers, and one has administered injections to her loved one. They have helped to design the study and will be involved throughout the study time. Study results will be fed back to carers who took part in the study if they wish to receive them, be published in scientific journals and discussed at national and international conferences.鈥�

The study started in November 2016, and will begin recruiting carers and their relatives in the Spring of 2017. It is approved by the School Ethics Committee and full NHS Ethics approval application is underway. The study has a clearly established legal and regulatory framework.