Debbie, from the Cancer Information team, talks about her own personal experience of cancer and the importance of advance care planning.

Like many families, we weren’t comfortable talking about it. As a result, when dad died, there wasn’t enough time for him to come home as he wanted. And we were left with conflicting opinions about what he had wanted to happen after his death.

At a time when our remaining family should have been supporting each other, we found ourselves torn apart. The only thing we knew for certain was that dad hadn’t wanted this.

Dying Matters

On 27th March, a conference is being held in London focusing on improving outcomes for people approaching the end of life. It’s being chaired by the Chief Executive of the National Council for Palliative Care and Dying Matters Coalition.

The Dying Matters Coalition aims to change our attitudes towards death and dying. Whether we are ill or not, they’re encouraging us to consider the following issues and tell our family and friends what we want to happen.

Where do you want to die?

Most people would prefer to die at home, as long as they know they’ll have good quality care. Often the choice of where someone will die depends on what they want, what help they’ll have from family and friends, and what services are available in the area where they live. The GP, district or community nurses and local specialist palliative care teams can tell you about the support they can offer.

We have details of all these services in our booklets Caring for someone with advanced cancer and Coping with advanced cancer. These are also available as audiobooks.

In addition, our booklet End of life: The facts has been developed by Macmillan with Marie Curie Cancer Care. It is primarily for people who would like to be looked after at home, and for their carers. It explains what happens during the last few weeks and days of life, and after someone has died.

How do you want to be cared for?

There are several ways you can make and record plans of what you would like to happen - or not happen. A Preferred Priorities for Care document can record your wishes about where and how you would like to be cared for, and the people you’d like to be involved in your care, for example.  It is not legally binding, but would be taken into account if you weren’t able to make decisions for yourself.

An Advance Decision to Refuse Treatment can record specific treatments you don’t want to have such as resuscitation.

What do you want to happen after you have died? 

Many of us have an idea of what kind of funeral we’d like, what songs we’d like played and where we’d like to be buried. Organising a funeral can be hugely stressful for your loved ones if they don’t know what you would’ve wanted. You can document your wishes in your will or keep a record of them in a safe place known to family or friends.

Making a will also ensures that the people you want to inherit your property, personal possessions and money actually do. It’s important to keep it updated to reflect major changes in your life such as meeting a new partner or having children.

Macmillan’s booklet, Your life and your choices: plan ahead explains why planning ahead is important whether you have an illness or not. It discusses creating a Lasting Power of Attorney, writing down how you’d like to be cared for using a Preferred Priorities for Care document and writing Advance Decisions to Refuse Treatment. It also has information about making a will, organ and tissue donation, and funeral planning.
Please note: This booklet only covers England and Wales. If you live in Scotland or Northern Ireland, you should ask a healthcare or legal professional to give you information that’s relevant to that country.

Planning ahead can be hard, but it can help give you a greater sense of control over your future. Your family and friends may also find it difficult to talk about, but it will ensure they know exactly what you want. And they will be comforted by knowing that they were able to do their best for their loved one.

Support from Macmillan

The Macmillan online community has a Living with incurable cancer support group, which is specifically for anyone with a terminal diagnosis, and a Carers only support group. You can also call our cancer support specialists on 0808 808 00 00 to order any of the resources mentioned and for more support and guidance.

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