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With the end in mind – helping your loved ones plan ahead

Advance directions for end of life

When supporting an older loved one, it’s important to know if they have opinions about what treatment they would or would not want towards the end of life.

The subject of what happens to our family members if they get unwell is not an easy one to think about, and we may understandably be reluctant to discuss this with those we love. But there is much to be gained when we do.

Reasons to plan

Research shows that when people plan ahead they’re more likely to receive the treatment that best fits with their wishes and values. In practice, this might mean fewer unwanted hospital admissions, being able to refuse certain medical interventions, or having a say over where they die. And it’s proven to help people live well in the present too.

At Compassion in Dying, we’ve supported over 56,000 people to plan for their care and they tell us it gives them peace of mind, and allows them to get on with enjoying life now. We’re a UK charity that can help people prepare for the end of life: how to talk about it, plan for it, and record their wishes.

There’s no time like the present for your loved one to start making their wishes known.

Why don’t people make plans?

So why do so few of us give our future healthcare the proper consideration it deserves?

It may be because many people believe that if they fall seriously ill, their family or ‘next of kin’ have the right to make decisions on their behalf, and they trust them to know and follow their wishes – but this is not true.

In fact, unless your loved one has formal planning in place, if they lose capacity to make a decision for themselves then treatment and care decisions will be made by a doctor, with family or friends left powerless to intervene.

Susan’s story

Susan called our information line last year after going through a traumatic experience with her father. He had advanced dementia and was tube-fed for the last years of his life in a nursing home. She knew that her father would have refused this treatment (called Clinically Assisted Nutrition and Hydration) if he had had the capacity to do so.

Sadly, Susan’s father hadn’t recorded his wish to refuse treatment in this situation or appointed his family to make decisions for him. This meant that his healthcare team could decide to continue the treatment despite Susan knowing this wasn’t what he would want.

Susan told us that being a close-knit family, they had assumed they would be able to step in and make the choices they believed would be in his best interest. They soon discovered that this was not the case. Understandably, this had left the family feeling helpless at a time when their dad needed them the most.

But Susan and her mother were determined to learn from their experience, and sat down together to ‘put things in place’. After witnessing how care at the end of life can go wrong, it was a relief for both of them to have this conversation and record their wishes. After all, planning for the future makes it easier to get on with living well in the here and now.

What you can do

Get the conversations started

What matters to your parent or other relative about how they’re cared for? What would they like to prioritise? Are there any treatments they really don’t want?

These are all good questions to ask your loved one. Also, you don’t need to start by talking about ‘dying’. You can focus on what’s important to them now and what makes them feel well and happy.

Try and find a moment when you are both relaxed and have plenty of time, and don’t rush the conversation. This may be the first time that you have both spoken frankly about these decisions, and it’s likely to take a few conversations.

Support them to record their wishes

There are three main ways someone can plan ahead:

  • An Advance Statement enables someone to record information about themselves, their lifestyle, and the care they want to receive. This might include living arrangements, dietary requirements, and their religious beliefs. An Advance Statement is free to complete and you do not need to use a solicitor.
  • An Advance Decision (also called a Living Will) allows someone to record any medical treatment (including life-sustaining treatment) they do not want to be given in the future, in case they later lack the capacity to make or communicate such decisions for themselves. An Advance Decision is legally binding, meaning medical professionals must follow the decisions made in it. Advance Decisions are free to complete and you don’t need to use a solicitor.
  • A Lasting Power of Attorney for Health and Welfare (LPA) allows someone to appoint a trusted person to make decisions about care and treatment on their behalf if they can no longer make decisions for themselves. An LPA costs £82 (February 2020) to register and you do not need to use a solicitor.

It’s important to bear in mind that these are personal decisions for your loved one, and whilst your help and support may be crucial, the wishes recorded should be theirs alone.

Share their decisions

It’s important that people know about your loved one’s wishes so they can be followed. If they have made an Advance Statement and/or Advance Decision they should give a copy to:

  • Close friends and family
  • Their GP so it can be added to their medical records
  • Their local hospital
  • Their local ambulance trust

What next?

Helping a loved one get their affairs in order means so much more than planning a funeral or drawing up a will. Recording wishes about treatment and care is just as important as planning for finances, so contact us to get started.

Compassion in Dying provides free Advance Statements and Advance Decisions as well as a nurse-led helpline to provide specialist support to people who want to plan ahead.

This article was written by Sarah Malik, Specialist Information and Support Nurse at Compassion in Dying

Call Compassion in Dying free of charge on 0800 999 2434 or visit MyDecisions.org.uk.

Free photo 83060734 © creativecommonsstockphotos – Dreamstime.com


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