Playing a role in your own end of life care

Roger Daniel, Director, Red Homes Healthcare

Every good provider of care strives to make their provision person-centred, meaning service users participate in the planning of their own care and can live as independently and freely as possible. This is the standard we all endeavour to meet so that we provide great care.

The most important and difficult part of our jobs is to ensure that, as people approach the end of their lives, their experience is as positive as possible. This is an inherently difficult time for the service user, their loved ones and for carers who, while also losing someone they are close to, must continue to provide the highest possible standard of care. It is absolutely crucial that we get this right.

But as those in our care approach this juncture, this can become more difficult. As people get older, they are more likely to develop problems communicating their wishes, which can mean that as services providers, we find it more difficult to provide care that is personalised to the user.

I’ve spent my life working alongside carers who work day-in and day-out to provide much-needed care to those struggling to come to terms with this important part of their lives. The key to facing it is to talk about it; early, often and as part of an ongoing conversation about your care.

Why participating in your own end of life care is more difficult, but more essential

It’s paramount that this conversation starts early. While we would all like to retain our independence into our later years, the reality is that as we grow older we are likely to find it more difficult to communicate with our loved ones and those that administer our care. This means making sure service users participate in their care becomes more difficult during a really important time of their lives.

Plan far ahead, communicate with loved ones

We should encourage them to communicate their wishes far ahead of time. Then, we and residents’ loved ones will be aware of their wishes from a very early stage ensuring that if the worst happens sooner than they expect, we and their loved ones will be prepared, and the service user’s wishes will be carried out.

We need to create a culture where care is part of an ongoing conversation – not a one-time event. Everyone recognises the value of planning for your future in a will, but fewer people think to plan for their end of life care. There’s no difference between the two. Either way, you’re helping to plan for a time when, unfortunately, they won’t be able to make those decisions themselves.

Talking through their end of life plans with us and their loved ones helps the service user understand what’s possible, and will make them and their family feel more prepared for what will be a difficult time. When we talk about what residents expect from us and from their end of life care more frequently, we help to make a taboo subject more comfortable for everyone, and make sure everyone involved is fully up to date on the wishes of the service user.

By making end of life care part of an ongoing conversation between carer, service user and families, as care providers we can be prepared for the worst whenever it occurs.

If that’s not possible, family knows best

Unfortunately, there are a number of scenarios where people come into our care without a plan for the end of their lives. People often find talking about end of life care difficult, or may have an advanced illness that impairs their communication. In those cases, it’s important to communicate openly and often with a service user’s loved ones to ensure that their wishes are respected throughout the process. Family members wishes should always be respected, and in difficult circumstances such as these they are best placed to understand residents’ wishes.


Edel Harris





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