Sorting things out at the end of life
Many people find that when they’re told they may be nearing the end of their life, they have unfinished business that they need to sort out.
As well as dealing with any practical and financial affairs, you may find that there are emotional loose ends that you want to tie up. For example, there may be old friends you want to see or wrongs you want to put right.
You may find yourself thinking a lot about the past, talking about shared joys, fears and regrets. You may go over old events in your mind or look through photo albums. If you’re well enough, you may want to visit certain places again, such as somewhere you used to live. You may also find yourself thinking about the future, and grieving for a time when you will no longer be there.
If you have old quarrels that you would like to settle, you could try writing to or ringing the person, explaining your illness and asking them to visit or get in touch. This sort of openness can often heal old hurts and you’ll probably find you feel more at peace.
You may like to write letters to people who are important to you, or perhaps record a CD, video or DVD to be given to them after your death. Some people like to write down their family history for the next generation or to put together a scrapbook for their children or grandchildren.
Memory boxes can also be very special mementos for loved ones. 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 are sad and perhaps difficult things to do, but they can also be satisfying as they give you a chance to reflect on the things that have happened in your life, both good and bad. They may even make you laugh and give you light-hearted memories. The important thing is to do what feels right for you, when it feels right.
Spiritual and religious issues
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Towards the end of life, people often become more aware of religious beliefs or spiritual feelings.
Death can challenge what we believe in so many ways. Some people find that, often for the first time in their lives, they feel the need to think about and discuss the meaning of life, their own experiences or relationships with others. Many people find that they become more aware of spiritual feelings or religious beliefs during this time. Spirituality can be expressed in many ways, through music, arts, nature, or how a person relates to their family or community.
People with a strong religious faith often find comfort in prayer or meditation.
Many people gain a lot of support from knowing that other people are praying for them. Other people may start to question their faith, especially when they are suffering.
It’s important to be able to talk through these issues with someone you trust. You can choose the people you want to talk to, and who you feel will be able to support you. You only need to share as much as you want to, and at a time when you feel ready. Don’t be put off talking to a chaplain or religious leader. They are used to dealing with uncertainty and being with distressed people. They are also usually very good listeners and may be able to help you find peace of mind.
It’s normal to want to think about what will happen to your possessions and your dependants, such as children, after your death. If you haven’t already made a will, there are several good reasons for making one. It’s the best way to take care of the people you love and can spare them painful decisions, bureaucratic hassles and financial problems that may occur if you haven’t made your wishes clear. If you die without a will, it often takes much longer to deal with the estate. It may mean that the people who inherit your estate aren’t the people you would have chosen. Putting your affairs in order can clear your mind of little worries, leaving you free to enjoy the time you have left.
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 precise wording to make sure your wishes are clear and that they are carried out exactly as you wish.
We have more information about making a will, which you may find useful.
You may want to make important choices about your care and treatment in the later stages of your illness. Usually, you can talk about your healthcare 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 Power of Attorney, Advance Statements and Advanced Decisions to Refuse Treatment.
England and Wales
In England and Wales, a Lasting Power of Attorney (LPA) is a legal document. It allows you to put in writing the name of someone you trust to make decisions or manage your financial, legal or health affairs on your behalf in the future if you’re no longer able to do so. The people you choose to make decisions on your behalf are known as attorneys. An LPA must be made while you’re able to understand what it is and what it means for you.
There are two types of LPA: the Health and Welfare LPA and the Property and Financial Affairs LPA. The Health and Welfare LPA can only make decisions about your care and treatment. They can’t make any decisions about any of your property and affairs, such as your finances. These can be made by a Property and Financial Affairs LPA.
There is a fee to register an LPA. If you’re receiving certain benefits or have a low income, you may be exempt from paying the registration fee or you may only have to pay part of it.
You can get more information about registering an LPA from a social worker at the hospital, the Office of the Public Guardian or organisations such as Age UK.
If you’re unable to make a decision about your medical treatment and have no family or friends to represent your views‚ the medical staff are required to appoint an Independent Mental Capacity Advocate (IMCA) to represent your interests.
In Scotland, the legal document that appoints one or more people to make decisions on your behalf about your care and treatment, should you become incapable, is called the Welfare Power of Attorney (WPA). The WPA has to be registered and there may be a fee to do this. You can get more information about WPAs from a social worker at the hospital, the Office of the Public Guardian Scotland and organisations such as Age Scotland.
In Northern Ireland, it’s not yet possible to appoint other people to make decisions about your care and treatment.
Advance Statements and Advance Decisions to Refuse Treatment
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Normally, you’ll be able to discuss with your doctor or other healthcare professionals how you’d like to be treated and which treatments you don’t want to have. Some people write down their choices in advance. If they become unable to discuss things with their doctors or to make any decisions, the doctors and their family will know what their wishes are.
An Advance Statement is a general statement of your views and wishes. It can indicate the treatment you would prefer and how and where you would like to be cared for.
An Advance Statement isn’t legally binding, but your doctors should take it into account when deciding what’s best for you.
It can be very helpful if you write down your preferences and wishes. If you do this,
the key people involved in your care will know how you wish to be cared for. If you find
it difficult to know what to say, or how to say it, your doctor or specialist nurse will be happy to help you write a document or a letter that includes your wishes.
One example of a document where you can write down your wishes and preferences is a Preferred Priorities for Care document. You can download a copy of the National End of Life Care Preferred Priorities for Care document. This document may not be used in all parts of the UK, so check with your healthcare professionals if they have a specific document they recommend.
An Advance Decision to Refuse Treatment (Advance Decision, Advance Directive or Living Will) is simply a decision to refuse treatment. 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.
An Advance Decision can only be made by someone aged 18 or over (16 in Scotland) who is able to make the decision (this is called having mental capacity). It must indicate exactly what treatment you want to refuse and in which situation. Demands to be given treatments or interventions can’t be included in an Advance Decision to Refuse Treatment.
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, provided 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 is legally binding, although it’s governed by common law instead of an Act and similar criteria apply.
Before making an Advance Decision, it’s important to discuss the decisions you’d like to make with one of your healthcare professionals. They can tell you the likely effects of any decisions you make. Remember that it’s important to share your decisions with your family so that they understand your wishes. Once you’ve made your Advance Decision, it’s best to document it so that it can be kept in your medical and nursing notes. There are certain situations where the law says an Advance Decision must be in writing, for example if it refuses treatment to keep you alive.
It’s helpful to give a copy of your Advance Decision to your GP. You may also be advised 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.
You can change your mind and rewrite your Advance Decision at any time, but this should be clearly recorded.
We have more detailed information about an Advance Decision to Refuse Treatment.
You can also find more information on the Advance Decision to Refuse Treatment NHS website.
Tissue, organ and body donations
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Many people think that if they have a medical condition, such as cancer, they won’t be able to donate their organs or tissue to another person when they die. Although it may not be possible for you to donate your organs, you can usually donate tissue, such as the corneas of your eyes. Your corneas could help to restore a person’s sight. You can ask your doctor or nurse for more information about donations.
The NHS Blood and Transplant website also has information about donations and keeps a register of people who wish to donate their organs and body tissues.
Some people may want to donate their body for medical research. If you’re thinking about doing this, it’s important to discuss it with your GP, hospital or palliative care team and your family or friends closest to you. As part of the donation process, you and your next of kin will be asked to sign a consent form. You can find out more about donating your body by contacting the Human Tissue Authority. You should bear in mind that not everyone who wishes to donate their body will be able to do so.
Funerals allow families and others to pay their respects to the person who has died. For family or close friends who are left behind, arranging a funeral can be stressful if they don’t know exactly what type of funeral service you want. 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.
Discussing your funeral plans with family and friends can be helpful. They may have ideas and suggestions for arrangements that may 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. It’s important to look into prices first. Make sure that you know what services are included in the price as they can vary.
You may find it helpful to make a list of your documents, such as your will, your 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.
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?
Choosing where and how you’d like to be cared for
Where would you like to be cared for? For example, at home, in a relative or friend’s house, in a nursing home, in a hospice or hospital?.
Is the place you have chosen to be cared for the best place for you to be?
If the first choice of where you’d like to be cared for isn’t possible for some reason, where’s the next best place?
How would you like your surroundings to be as you’re dying?
If you want to be at home, do you need to think about sleeping in a different room to make it easier for you? For example, in a room downstairs?
Who do you want to have around you? Are there people you don’t want to see or don’t feel well enough to see?
How do you want to be treated by your relatives and close friends when you’re dying?
If you’re a carer
A carer is someone who provides unpaid support to a family member or friend with an illness or disability.
How can you take care of yourself?
What do you need to be able to look after your relative or close friend?
Can you get help with housework, shopping and cooking so that you have more energy to be a carer?