Dr Claire Capewell, consultant in palliative medicine, speaks about the importance of planning for end-of-life this Dying Matters Awareness Week:
I’m employed by Lancashire Teaching Hospitals NHS Trust and work closely with St Catherine’s Hospice, particularly our wonderful team of community nurses.
We want to help people discuss what’s important to them with their families as well as with professionals, such as their GP or district nurse, or people like me who specialise in palliative care.
We refer to it as ‘advance care planning’, which includes subjects such as the individual’s concerns as they approach end-of-life, their values or personal goals for care, their understanding about their illness and prognosis, as well as particular preferences for types of care or treatment that may be beneficial in the future, and the availability of these treatments.
Advance care planning is a voluntary process of discussion; some people like to make detailed plans and others aren’t ready to talk about the end of life at all.
There’s no right or wrong way to go about it. Often the role of the professional is simply to ‘kick start’ the process and families will continue the conversations in their own way and at their own pace.
We can also help give information about the ‘what ifs’ and advise people to think about practical and medical considerations, which may not have been at the forefront of their minds initially.
The most important thing is to discover more about each person’s wishes, such as where they would prefer to spend their final days, and how they would like to be remembered.
Planning for end-of-life is understandably a daunting experience, and in my experience people worry that the conversations will cause upset. But when patients speak to us and their families and friends about what’s important to them and their wishes for the future, it can feel like ‘a burden has been lifted’, can ease some pressure on their loved ones, and it helps us to carry out their personal requests should they be unable to communicate or make decisions for themselves in the future.
We encourage people to document what they want and we have different tools to help us do that – one used locally is called the ‘Preferred Priorities of Care’ document.
This isn’t legally binding but it might prompt people to look at ‘legal stuff’ like Advance Decisions to Refuse Treatments, or Lasting Power of Attorney.
Getting to know our patients as individuals is important to us and we are always happy to talk to people about these matters, individually or with loved ones. It’s good to talk!