Hidden pressures of caring for terminally ill people at home

6 October 2014
New research reveals family carers of those living with terminal illnesses are not being provided with the support and information they need when managing and administering medication at home.

"Managing end of life medications at home", published in the BMJ Supportive & Palliative Care Journal, is the first report from Unpacking the Home, a pioneering new piece of research from Lancaster University, funded by Marie Curie.

This is the first research of its kind to take an in-depth look at the responsibilities placed on those caring for family members with a terminal illness in their own homes. It is estimated that there are almost half a million people currently caring for a family member with a terminal illness at home, with many having the responsibility of administering medication placed on them. 

The report uncovered the hidden, often overlooked pressures relatives face when caring for a loved with a terminal illness, many of whom have multiple medical needs. It says that carers are given too much responsibility for and too little advice about administering medication such as pain relief at home. Many carers are concerned about dosage errors, especially overdosing or failing to administer drugs correctly. Carers themselves are often dealing with their own medical conditions, further complicating daily medication regimes and management. 

The authors also found one of biggest concerns is pain management. Little is known about the complex realities of managing pain at home, demonstrating more work needs to be done to ensure the support mechanisms are in place so carers feel empowered to administer medication, and when to ask for help.

Professor Sheila Payne, Co-Director of the International Observatory on End of Life Care at Lancaster University and lead author of the research, commented: "“Family carers are crucial to enabling older people to die at home if they wish to. Our study showed that they had a largely unrecognised and unsupported role in delivering medicines to patients as they become more dependent. Most described this responsibility as demanding and stressful."

Dr Bill Noble, Medical Director for Marie Curie, said: "This is a very important piece of research for us, and the findings should not be taken lightly. It shows that family carers are simply not being armed with the support they need to administer medication to patients dying at home. Without adequate preparation and sufficient information, education and support, implementation of home-based end of life care policies is seriously undermined. 

“Communication between GPs, community nurses and family carers about their roles and responsibilities regarding medications may help to prevent the anxieties, but mostly family carers have to manage alone. This has to be addressed if we are to achieve a better balance of people dying in their preferred place, as well as reducing the number of unnecessary hospital admissions.” 

The full report can be downloaded from the BMJ website

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