Sorting things out

If you have been told you’re nearing the end of your life, you may find you have things to sort out.

This can include making decisions about your care or sorting out practical or financial affairs.

Sorting these out can involve legal processes such as setting up a Power of Attorney or an Advance Decision to Refuse Treatment, or making a will. You may want to think about what sort of funeral you want, or if you’d like to donate organs, tissue or your body for medical research.

Looking after emotional matters can also be an important part of preparing for the end of life. Talking to people you love, sharing memories and visiting favourite places can be sad and perhaps difficult things to do. But it can also give you a chance to look back on things that have happened in your life. The important thing is to do what feels right for you, when it feels right.

We have some commonly asked questions to help you think through some of these issues.

Unfinished business

You may find yourself thinking a lot about the past, and talking about good times you have had and maybe less good times. You may want to see old friends, think about places you have visited or look through photo albums. If you’re well enough, you may want to visit some places again. You may also find yourself thinking about the future, and grieving for a time when you will no longer be here.

You may have difficult relationships with some people and want to talk to them about certain things. You could try writing to or ringing the person, explaining your illness and asking them to visit or get in touch.

You may also like to:

  • write letters to people who are important to you
  • record a CD, video or DVD to be given to them after you have died
  • write down your family history for the next generation
  • put together a scrapbook for your children or grandchildren.


Memory boxes

Memory boxes be a helpful way of passing on memories to your family and friends. They can include messages and letters, a piece of jewellery, photographs, or a present to mark a special birthday. If the memory box is for a child, they may want to help with making it and filling it with special items.

These can be sad and perhaps difficult things to do. But they can also give you a chance to reflect on things that have happened in your life, both good and bad. They may even make you laugh as you remember happy events. The important thing is to do what feels right for you, when it feels right.


Making a will

Whatever your age, having an up-to-date and valid will is important. Dying without a will means that your wishes for who you would like to leave your estate (property, personal possessions and money) to can’t be guaranteed.

Making a will isn’t as expensive or difficult as you might think, but it is a legal document and must be prepared properly. It’s usually best to use a solicitor who will be able to help with the wording. They will make sure your wishes are clear and that they are carried out exactly as you want.

We have more information about making a will, which you may find useful. You can also find information about making a will on the Marie Curie website.


Making choices

You may want to make important choices about your care and treatment in the later stages of your illness. Usually, you can talk about this with the doctors and nurses looking after you. However, there may come a time when you can’t make decisions or communicate easily.

There are different ways you can plan ahead for a time when you may not be able to make decisions yourself.

This is sometimes known as advance care planning and includes:

  • your wishes for your care
  • Advance Decisions to Refuse Treatment
  • Power of Attorney.


Your wishes for your care

It’s important to think about how and where you would like to be cared for if your health were to change and you were unable to tell others what you want to happen.

It’s best to write down your wishes and preferences so your family and health or social care professionals know how you’d like to be cared for.

These advance statements of your wishes aren’t legally binding. But they must be taken into consideration when healthcare professionals make decisions about your care.

There are a number of documents that can be used to record your wishes. You can ask your healthcare professional which documents are used in your area.

I want all the stuff taken away. If I need a breathing machine that’s fine, but apart from that I just want it to be as natural and as quiet and as peaceful as possible.

Patrick


Advance Directives and Advance Decisions to Refuse Treatment

An Advance Decision to Refuse Treatment or Advance Directive is sometimes known as an Advance Decision, or Living Will. It’s a decision about specific treatments you don’t want to have. For example, you may decide that if your condition suddenly worsens and your breathing stops, you don’t want people to try to bring you back to life (resuscitate you). Or, that if you’re very ill and have an infection, you don’t want to be given antibiotics to try to prolong your life.

If you refuse a particular treatment you will still receive good care and have medicines to help manage any symptoms you may have.

An Advance Decision to Refuse Treatment can only be made by someone aged 18 or over (16 in Scotland) who is able to understand the decision they are making. This is called having mental capacity. It must state exactly what treatment you want to refuse and may also state when the refusal should apply. It is helpful to include as much detail as possible.

An Advance Decision to Refuse Treatment or Advance Directive can’t include a request to be given specific treatments or to have your life ended.

Before making an Advance Decision to Refuse Treatment, it’s important to discuss the decisions you’d like to make with one of your healthcare professionals. It’s also important to share your decision with your family so they understand your wishes.

Once you’ve made your Advance Decision to Refuse Treatment, it’s best to write it down so that it can be kept in your medical and nursing notes. It’s helpful to give a copy to your GP. You may also be asked for permission to give copies to the ambulance service, out-of-hours doctor, and district nursing and palliative care services. This makes sure that your wishes and preferences are known to the teams that you may need to contact, day or night.

There are certain situations where the law says an Advance Decision to Refuse Treatment must be in writing, for example, if it refuses treatment to keep you alive.


Advance Decisions to Refuse Treatment and the law

In England and Wales, an Advance Decision to Refuse Treatment is legally binding. This means it must be followed by your healthcare team, if they know about it. It must also meet certain criteria set out in the Mental Capacity Act (2005). Your healthcare team will be able to tell you more about this.

In Northern Ireland and Scotland, an Advance Decision to Refuse Treatment or Advance Directive is also legally binding. It’s governed by common law instead of an Act and similar criteria apply.

You can change your mind and rewrite your Advance Decision to Refuse Treatment at any time, but this must be clearly recorded.


Power of Attorney


Tissue, organ and body donations

Many people think that if they have a medical condition, such as cancer, they won’t be able to donate their organs or tissue (such as the corneas of the eye) to another person when they die.

Having a medical condition, such as cancer, doesn’t mean that you are excluded from organ or tissue donation. But it may affect what you can donate.

The NHS Blood and Transplant website has information about donations and keeps a register of people who wish to donate their organs and body tissues.

The way people in Wales choose to donate their organs is different. People living in Wales are expected to opt out if they have an objection to being an organ donor. If you are from Wales and want to be a donor you can:

  • choose to be a donor by registering a decision to be one, as you can now do (this is known as opting in)
  • do nothing, which means you have no objection to being a donor (this is known as deemed consent).

If you do not want to be a donor then you must register a wish to not be a donor (this is known as opting out).

You can find more information about this at Organ Donation Wales.

Some people may want to donate their body for medical research or teaching. Not everyone who wants to do this will be able to. If you’re thinking about donating your body, it’s important to discuss it with your GP, hospital or palliative care team and your family or friends closest to you.

You can find out more about donating your body by contacting the Human Tissue Authority.


Planning your funeral

Funerals allow families and others to pay their respects to the person who has died. For family or close friends, arranging a funeral can be stressful if they don’t know exactly what type of funeral service you would like. If you tell your family and friends what you want, your funeral is much more likely to reflect your wishes. It may also be one less thing for your family or friends to worry about.

You may find it helpful to discuss your funeral plans with your family and friends. They may have ideas and suggestions that will help them celebrate your life, say goodbye and remember you. Here are some suggestions of what you may want to include in your funeral plan:

  • whether you want a burial or cremation
  • whether you want to have a religious service or not
  • whether you want specific songs played or things read out
  • whether you want flowers
  • whether you want donations given to specific charities
  • what clothes you want to wear.

Funerals can be expensive so you may want to pay for your funeral in advance by taking out a funeral pre payment plan. You can find out more about this from your local funeral directors or the National Association of Funeral Directors. It’s important to look into prices first. Make sure that you know what services are included in the price as they can vary.


Important documents

You may find it helpful to make a list of your documents. This includes your will, Advance Decision to Refuse Treatment and your funeral plan. Include your bank and building society details, any insurance policies you have and the details of your accountant, solicitor and tax inspector. Write on the list where to find this information and make sure that your partner or the executor of your will knows where it’s kept.

You can find more information about planning a funeral and coping with bereavement on the Marie Curie website.


Issues to consider

We’ve listed some questions to help you and your carers think about things you’d like to sort out and how you’d like to be cared for. We hope that this information will help answer some of your questions. These questions are just suggestions. You can ignore any that aren’t relevant to you.

Sorting things out

  • What information do you or your carers need to know about your illness to help you understand what may happen to you?
  • Would you like a doctor or nurse to speak to you, your relatives or close friends about any particular issues?
  • Is there anything that you want to do before you get too ill?
  • Is there anything you want done for the people you love?
  • Is there anything you want done for any pets?
  • Are there any issues you’d like to sort out with particular people?
  • Are there any spiritual or religious practices that are important to you? Do you need help to make sure these happen?
  • Have you made a will?
  • Do you want to create a Power of Attorney?
  • Are there any particular treatments you don’t want to have? If there are, do you want to write an Advance Decision to Refuse Treatment?
  • Have you considered tissue donation or donating your body for medical research?
  • Have you made any funeral arrangements? For example, have you decided whether you would prefer to be cremated or buried?
  • Are there any particular practices you’d like to have carried out at the time of your death?
  • Do you want your body to be treated in a particular way once you have died?


Financial help

You or your family may have concerns about income, additional costs or managing your finances as you near the end of your life. You are likely to be entitled to benefits in the last months of your life to help with your care. You may also be entitled to free prescriptions.

Some charities and other organisations provide grants to help with costs.

We have more information on benefits and other financial support at the end of life.


Dying Matters

Dying Matters is a group of people and organisations working to improve awareness of death, dying and bereavement. Its aim is to help people talk more openly about these important issues, and to encourage people to make plans for the end of life. Planning ahead is important because it’s not always possible for medical professionals or relatives to know exactly what you’d like to happen in certain situations.

Dying Matters holds many events and activities around country, particularly during Dying Matters Awareness week, to get people talking about how they might plan ahead for their own or a loved one’s death. Find out more about the work of Dying Matters.


Working together to create information for you

We worked with Marie Curie Cancer Care to write our End of life information.

Thank you to all of the people affected by cancer who reviewed what you're reading and have helped our information to develop.

You could help us too when you join our Cancer Voices Network.

Back to Dealing with the news

Coping with the news

Hearing that you may be reaching the end of your life can be very difficult, but there are people who can support you.

Being cared for at home

If you choose to die at home, it’s important that you and your carers have as much support as possible.