While it’s common for many people to put off end of life care planning, here Beth Britton writes about the importance of prioritising it and gives practical ideas to inspire you.

End of life care planning is never an easy topic for professionals to broach or families to participate in, but it is an essential element of planning a person’s care going forward.

Ideally, end of life planning happens long before the person approaches the end of their life and is then periodically reviewed thereafter. End of life care doesn’t normally start until one year before the person’s death, and for most people it may come much later than this, often in the last weeks or days of life.

In my dad’s case, although we regularly discussed his wishes in his care reviews, and I signed a ‘Do Not Resuscitate’ form a couple of years before his death on the advice of his GP as dad was so frail, his actual end of life care didn’t begin until just under a month before he died, directly after he’d developed aspiration pneumonia and it was clear he wouldn’t recover.

What is the purpose of end of life planning?

End of life care should help a person live as well as they can to retain their dignity. To do this, the plans for the person’s end of life need to be as reflective of the person’s wishes as they can be, focused on maximising their independence for as long as possible, and be very clear in giving direction to the professionals and family members who will be providing the person’s care.

What does a good end of life care plan look like?

  • The plan should specify the person’s choice for where they receive their end of life care and where they want to die.
  • It should be clear about anything the person doesn’t want, which might include not going to the hospital if their condition deteriorates.
  • It should detail any family members/ friends or significant others who should be contacted if the person’s health deteriorates/ they enter end of life care.
  • The person’s spiritual and faith wishes and preferences should be specified alongside any practical arrangements that need to be made as a result. For example, arranging for a priest to visit the person or any rituals that need to be observed.
  • It may provide information about the environment that the person wants to rest in during the last hours/ days of their life. This could include music they might want playing, aromatherapy smells they may want to be surrounded by, or any items they want close to them, for example, fresh flowers, family pictures or something they want to be able to touch.
  • It should detail the person’s wishes and plans for their funeral.

How can you help a person to complete an end of life care plan?

Begin discussions early whenever possible – don’t leave it until the person is potentially too unwell to participate as it will be much harder to gather all the fine details.

Although end of life planning is often done as part of formal care planning meetings, informal discussions can sometimes be more productive. If time allows, you may be able to complete a person’s end of life care plan over a period of time, gradually adding information in a non-pressured, relaxed way.

Be an opportunist in how you gather important facts. You may find spontaneous discussions about favourite music or aromatherapy smells come at unexpected times. You can then just note what you’ve learnt into the person’s end of life care plan.

Planning resources

Dying Matters is a great place to start if you want more information on end of life planning https://www.dyingmatters.org/page/resources-planning-ahead.

I would also recommend a resource from one of my consultancy clients, MacIntyre, who created ‘My plan about what I want to happen when I die’ https://www.macintyrecharity.org/. The form is in an easy read format, and takes you step-by-step through everything you need to be thinking about in terms of after-death planning.

For more information about end of life care planning see our featured article: https://www.carechoices.co.uk/end-of-life-care/

About the author:

Beth Britton is an award-winning content creator, consultant, trainer, mentor, campaigner and speaker who is an expert in ageing, health and social care https://www.bethbritton.com.