Update – June 2018

Have you made plans for future care?

A recent poll has found that fewer than one in ten people have recorded their future wishes for treatment and care, despite the vast majority feeling it is important that healthcare professionals are aware of their priorities and concerns.

This means that if they lose the capacity to make key decisions in future through illness or injury, they could end up receiving treatment they would not have wanted.

Compassion in Dying has a useful new free guide, Planning Ahead, to help with making plans and just as importantly, sharing them with those who need to know.


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Advanced Decision or Lasting Power of Attorney For Health and Welfare

Fewer than one in ten people have recorded their wishes in a legally binding way, either by making an Advance Decision (‘Living Will’) which allows someone to state whether they want to refuse life-prolonging treatment in certain circumstances (4%), or by making a Lasting Power of Attorney for Health and Welfare to appoint a trusted person(s) to make healthcare decisions on their behalf (7%).

This means that doctors may be left to make important decisions without knowing a person’s values and preferences.

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Peter Coe, 69, from Lyme Regis, explains the benefits of discussing and recording healthcare wishes

“My dad had memory problems and wanted me to support him in enforcing his healthcare decisions and ensuring that his choices were undertaken. He made me his attorney for health and welfare, which provided an opportunity to discuss his wishes for the future.
“Sadly, in 2016 we were told his kidneys had failed and Dad didn’t have the capacity to make a decision over whether to opt for dialysis. We were told it might delay the effects for a few months but would involve arduous trips to the hospital several times a week. At the time Dad was living alone with support for daily tasks from his carers and me, and being able to spend his days in the garden, watching the sea, was very important to him. He had previously discussed what decision he would have made in such circumstances. I therefore felt confident that I could make the decision to refuse dialysis on his behalf, while ensuring he was comfortable and pain-free.
“It was a hard decision to make and I had to discuss it thoroughly with the doctors, but it would have been much more difficult if I hadn’t spoken to Dad about his priorities. I knew it was what he would have wanted and as a result he was able to spend his final months doing the things he loved most, seeing his family and enjoying his garden.”

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Answering common concerns about Advance Decisions

Planning Ahead explains in simple language the information people need to understand how treatment and care decisions are made, how they can plan ahead to ensure they stay in control of these decisions, and who to talk to and share their wishes with.

It also includes answers to the common concerns that Compassion in Dying hears on its free information line such as, ‘can I have a ‘Living Will’ as well as a Lasting Power of Attorney for Health and Welfare?’, ‘can anyone override my wishes?’, ‘how will it feel to plan ahead?, and ‘is it expensive?’

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Natalie Koussa, Director of Partnerships and Services at Compassion in Dying, said:

“We produced Planning Ahead because sadly any of us could become unwell and unable to tell the people around us what we do or do not want. By making plans now, you can record your preferences for treatment and care so that if you are ever in that situation, your wishes are known and can be followed. It gives you control and allows you to express what is important to you, providing peace of mind. Planning ahead means you can get on with living, safe in the knowledge that if an illness or injury leaves you unable to make decisions about your treatment and care, it will be easier for those around you to respect and follow your wishes.

“We are thrilled to have official endorsement from the Royal College of Nursing and the backing of other leading organisations in the sector, such as the Alzheimer’s Society. We hope Planning Ahead will be a valuable tool for individuals, their loved ones and health professionals alike.”

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Making an Advance Decision is now easier

An Advance Decision allows you to record any treatments that you do not want to be given in the future, in case you later become unable to make or communicate decisions through injury or illness.

It allows you to remain at the heart of these choices, giving you peace of mind that if the worst does happen your wishes will still be followed.

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Compassion in Dying have a form to make the process as easy as possible

The form takes you through different conditions in which you could lose capacity so you can record your treatment wishes for each scenario clearly and concisely.

It also includes a section in which you can state other wishes and preferences, such as where you’d like to be cared for, and your wishes regarding pain relief, pregnancy and organ donation.

There is space to include details of your Lasting Power of Attorney for Health and Welfare or anyone else you want to be involved in your care.

You can complete the form online, or if you prefer, download it to fill in by hand. Links will open in a new browser window. You can also have a copy sent to you by post.

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You can still have control of your treatment, if you have planned in advance

Many assume that there’s nothing they can do to prepare for such an event, or that they’ll have no say over what care and treatment they’ll receive. But there are things people can do now.

You can still have control over your medical treatment and care and be at the centre of decisions by recording your wishes now – for instance by completing an Advance Decision to Refuse Treatment.

This allows people to dictate the treatment they would not want to receive if they were to lose capacity to make these choices in future. Completing one is simple and free, and it can be done at your own pace using Compassion in Dying’s website, without the need to involve a lawyer.

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Complete an Advance Statement or Lasting Power of Attorney for Health and Welfare

Make It Your Decision animation

You can also set out other things that are important to you relating to your future care in an Advance Statement, such as your religious beliefs, dietary requirements or where you’d like to be cared for. Another option is to make a Lasting Power of Attorney for Health and Welfare – appointing a trusted person to make decisions about your treatment or care on your behalf, should you become unable to.

Contrary to popular belief, family members have no automatic right to enforce their loved one’s wishes – a misconception that can be the source of much heartache. Instead it falls to doctors to make best interest decisions about a patient’s care and treatment.

Having your wishes for care and treatment set out in an Advance Decision or other legal mechanism, means that if you become unable to make your own decisions, you can have peace of mind that your wishes will be known and followed. Your family won’t be left stranded. Your doctors won’t be left to make decisions without knowing what you would or would not have wanted. Quite the opposite – by recording your wishes in a legally binding way, you can make it your decision.

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Further Resources

You can order a free copy of Planning Ahead here

Visit www.makeityourdecision.org.uk/ to view Compassion in Dying’s animation, Make It Your Decision, learn more about the campaign and order resources.

Specialist information and support about planning ahead is available from Compassion in Dying. There is a free information line at 0800 999 2434 or you can visit the website compassionindying.org.uk/

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