More support and information needed for carers on managing medication

by Caroline Weston Policy and Public Affairs Manager Caroline Weston, Policy and Public Affairs Manager

New research has revealed that family members caring for terminally ill people do not have enough information and support about administering medication in the home.
The paper, ‘Managing end of life care medications at home’, is the first time in-depth research has been conducted into the responsibilities placed on people caring for someone with a terminal illness at home. This research, led by Professor Sheila Payne at Lancaster University and funded by Marie Curie, is particularly relevant given the increasing focus of politicians on supporting more people to die at home. Family members will play a crucial role in enabling this to happen. The End of Life Care Strategy describes family carers as ‘co-workers’ with the care team to support their relatives at the end of life. This research responds to the rise in ‘anticipatory prescribing’, whereby GPs prepare prescriptions in advance for terminally ill people. This means that if someone urgently needs specific medication out of standard working hours, they should be able to access it without contacting the GP for a new prescription. This can help avoid unnecessary admissions to hospital, but it means the management and storage of this medication becomes the responsibility of the family carer, rather than health professionals.

The pressures of caring at home

Our research team wanted to find out how carers felt about taking on this role and what impact it had on them as family carers. They interviewed bereaved carers about their experiences of providing direct care for an older person dying at home, specifically about how they managed the medication for the person they were caring for. They found that this responsibility leaves family carers feeling under pressure when asked to manage their family member’s medication. It identifies a number of key themes which interviewees felt were not taken into account when they were being asked to take on this responsibility. Carers felt too much responsibility was placed on them when they were caring for relatives approaching the end of their lives at home, particularly when it came to administering medications in order to manage pain. There was a particular anxiety about being given responsibility for medications with potential side effects, particularly with morphine.

A lack of relevant information

The carers felt they were not given the right information, which made it difficult for them to understand how medication should be administered correctly. Many were concerned about making errors, especially overdosing or failing to administer drugs correctly. The carers also reported wanting health professionals to be more involved in medication management so that the burden was less for them. Many of them felt they were unable to challenge professionals if they felt pain was not being properly managed. There was also concern about certain methods of administering medications and their implications. The use of syringe drivers was often perceived as the patient making the transition into the final dying phase, which often added to the carer’s distress. The research found that pain management was seen as one of the biggest concerns faced by people living with terminal illness and their carers. This suggest more work needs to be done to ensure the right support is in place so carers feel empowered to administer and manage medication, and feel able to ask for help. As politicians of all parties begin to consider how to support more people to die at home, important questions have to be asked about what carers need to support family members. It is important that as well as ensuring people get the care they want, when they want it, we must also ensure that family carers get the support and information they need. Read the full report