Dying Matters Awareness Week – advance care planning

May 11, 2021

EPUT is supporting Dying Matters Awareness WeekIn this blog post, our clinical lead for end-of-life care Tracy Reed, shares her thoughts and experience on advance care planning.

Have you ever thought about where you would like to be cared for at the end of your life?

This isn’t something many people want to think about or discuss, but at a time when you have a life-limiting illness it is something health and social care staff want to support. We all have choices and for many of us, this would be dying at home, while for others – a hospital, care home or hospice may be their preferred choice, depending on the circumstances surrounding how we are dying.

Research shows that by having some of these discussions early, it increases the chances of a person dying in a place of their choice because health and social care professionals will take this into consideration and your loved ones will often strive to support your decision. Having this conversation with loved ones and your care providers is essential to getting your voice heard.

What is advance care planning?

Advance care planning is a series of conversations around you, your preferences, choices, and wishes for future care. Although not legally binding, it’s very much about you as an individual and what’s important to you. Where you want to be, religious and cultural beliefs, what elements of your care matter to you and who you want supporting you in the future. For some people, their condition means they may lose capacity to verbalise as their illness progresses, so early discussions are essential.

EPUT supports people to make choices, and we include discussions and record these in medical records when people express their wishes.

During my time as clinical lead for end of life, I have not only supported people to discuss, record and work with health and social care services to make this happen for people in our care, but I have also acted as an advocate when this information is documented clearly in people’s medical records at the time of their deterioration. For some people with long-term conditions, a change of environment and care setting can prove very distressing, and all eventualities should be considered. The most important element of advance care planning is sharing a person-centred approach to care, ensuring the person’s individuality is supported at a time when they are at their most vulnerable, and that their loved ones are included.

We only get one chance to get this right. Have you considered advance care planning? What matters to you? What matters to your family?

If you would like to share your story or experience, please contact EPUT’s communication team: epunft.communications@nhs.net