Dying from cancer
This section is for you if you have cancer and it is likely you may die within the next few months - or if you have a close friend or relative who is terminally ill with cancer. The information has been prepared and checked by cancer doctors, other relevant specialists, nurses and patients. It explores what it means to die with cancer, what is likely to happen, and what information and support people most need in this situation.

You may find reading this for the first time difficult and emotional. Therefore, you may want to wait to read it when you will be somewhere private and know that you will not be disturbed.

Most of us cannot know when we will die, but one in four of us will die from cancer. If you are reading this section, it is probably because you have cancer and it is likely you may die during the next few months, or it is a close friend or relative who is terminally ill. It is likely that the cancer has spread and doctors will have explained that active treatment is no longer likely to be effective. This section explains what happens at the end of life and how you can plan for it.

It is important to remember that everyone's body reacts differently to advanced cancer. People who have been sent home because nothing more can be done may live with their cancer for months or even years, and perhaps even die from some other cause. Many people have a remarkable ability to hang on for a special event such as a birth or a wedding, often seeming satisfied then to slip away peacefully. However, because no one can tell you for sure how long you have left, it is important to do the things you really want to do without delay. You can be confident that your doctors and carers will help you remain as symptom free and independent as possible, for as long as possible.

Most people find it very difficult to talk about death and the process of dying when it is happening either to themselves or to someone who is close to them. People who are dying sometimes describe being surrounded by a 'conspiracy of silence' where both they and their loved ones know what is happening, but neither feels able to talk about it with the other. We hope that this booklet will help you to talk openly throughout this difficult time. Equally, if after acknowledging what is happening, you choose not to talk about it any more and simply get on with living your life to the full, this too, is your choice to make.

Coping with the news
Hearing the news that your doctors think that your cancer cannot be cured is always very difficult. You may feel that you want to discuss the options more fully or have a second opinion. Even if your doctors are busy they will usually find time to answer all your questions to the best of their ability, either at this point, or a few days later when you are better able to talk to them. It is important that you don't feel under pressure from your family or friends to accept or refuse further treatment. The final decision must be your own, even if you discuss the options with your partner or friends.

You might find it hard to believe what you are hearing, or feel that it is like a nightmare and that you will wake up and find it is not true. The initial shock and disbelief may be replaced after a few hours or days by powerful and often overwhelming emotions. These will make it difficult for you to think straight, and you are likely to need some time on your own or with your partner to come to terms with the news. If you need to discuss it with someone outside your family, call the MACMILLAN helpline, where our nurses are trained to help in such difficult situations.

Strong emotions
'Sometimes I feel so angry - not with anyone in particular, just with the situation we are in. I keep thinking, why me?'

You may feel very angry - with yourself, perhaps because you feel you should have done more to prevent or fight your cancer, or with the doctors or nurses, for telling you bad news. You may be angry with fate, or your God, feeling that it is very unfair that this should happen to you. You may fear what the future will bring. You may find yourself tearful and depressed, and be unsure how to cope with all the emotions swirling round inside you. Some people are stunned and resentful to see life going on as normal around them when their own world is in such turmoil.

Everyone experiences some or all of these emotions, but as time goes on most people find that the distress gets less intense. Dying with cancer does not turn you into a different person, with less need for love, companionship, friendship and fun. For many people, their partners, family and friends become even more important, a vital source of support and reassurance. However, people who have cancer sometimes feel that a great deal of responsibility rests with them. It may seem as though you are the one who has to be strong; you have to start the difficult conversations and help other people to face your illness, even though it is you who is ill.

If you are able to talk openly about everything to those closest to you, they will probably be relieved and able to respond. However, when you are unwell or feeling low it is very difficult to take on this burden.

People close to you
Serious illness does strain relationships and many people find it difficult to know how to respond. You may find people react in unexpected ways. Some may try to deny the seriousness of the situation with false jollity, preventing you from expressing how you feel. Others may try to withdraw from your company rather than risk saying the wrong thing. Some people will avoid discussing your illness completely, while others may appear unsympathetic. Your partner, children or close friends may irritate you by being over protective, trying to 'wrap you in cotton wool'. In these ways, lifelong friends and close family can become strangers, just at the time when they are most needed. It may help to remember that everyone is shocked by bad news. Your family and friends are also wrestling with powerful emotions, and their initial reactions do not necessarily reflect their true feelings.

Sometimes partners try to protect each other from the truth by denying it, even though both are aware of what is really happening. Yet talking about your feelings with your partner can help to support you both through the sadness, anxiety and uncertainty. If you can both be open about your needs, fears and hopes, you may find that your relationship is made stronger as you face the challenge of your illness together. When words fail you, or seem inadequate, a hug or holding hands can be a great source of comfort. It is important to keep your relationship as normal as possible. So if you have always argued a lot, then don't try to change this now. There are bound to be times when you do not get on well together. Just at the time when you need each other most, the stresses of an uncertain future or the difficulties of feeling tired or unwell can drive you into angry rows. Earlier on you may have been able to patch up your differences, but now you may find problems harder to resolve because you feel you have less time to consider compromises.

Anger needs time to die down, so it may help to relieve the stress if you give yourselves short breaks from each other, to think more calmly and recharge your emotional batteries. Sometimes talking to someone else - a friend or relative or someone outside your own close circle such as a counsellor or a MACMILLAN   helpline nurse - can help. If this seems a sensible idea, you may want to discuss it with your partner first so that they don't feel excluded or that they have failed you.

There is no medical reason to stop making love because you have cancer. Cancer is not infectious. In fact, a sexually loving relationship can generate warmth, comfort and a sense of well-being which can only be helpful at this time. Cuddles and affectionate kisses can also show how much you care for someone even if you don't feel like making love.

Talking to children
It is never easy to talk to your children about your cancer and the fact that you are dying. However, it is often best to be as open with them as you can, providing information appropriate to their age. Children can be very perceptive. Even if you do not tell them anything, they will usually sense that there is a serious problem and let their imagination run wild. Then they can become frightened and if they are told that everything is fine, they will become distrustful and even ashamed of their worries. They may feel isolated and excluded, unable to tell you how sad and upset they are. Children often, irrationally, feel that they are in some way responsible for their parent's illness or death, in the same way as they do with a divorce or other marital breakdown. If you can discuss your cancer with them, you can reassure them that it is not their fault.

How and what you choose to tell your children will depend on their age and how much they can understand. For example, children younger than about 8 or 9 years find it difficult to understand that death is permanent. On the other hand, children can often discuss death more openly and candidly than adults. They also need to know that it is acceptable to talk to other close family members about your cancer. It is useful if they know that there are other adults, such as grandparents, with whom they can share their feelings and who will support them. However, you need to prepare grandparents for this role, not forgetting that grandparents are also trying to come to terms with the loss of their child.

It might be helpful to warn your children how they might be affected, for example that there will be days when you feel too ill or tired to be able to play with them or join in their activities. If you talk a bit about your feelings, it may help them to express theirs too.

Children may react in many different ways to your illness, and you may find some of these difficult to deal with. For example they may start to behave badly, to cover up their feelings of insecurity; they may withdraw from you, perhaps out of fear of being hurt or of catching cancer, or become very clingy because they are anxious that something might happen to you when they are not there. Teenagers may be angry and resentful that you are not able to support them in the way that you used to. All of this can be very distressing to cope with.


Facing it alone
It may be very hard to keep your spirits up and be positive if you live alone. Even though you value your independence, being ill can make you feel very lonely.

People who love you will want to help in any way they can. Some people will find it difficult to talk about cancer, but would be happy to help in more practical ways, such as doing your shopping or helping with your garden. Other people will be able to keep you company sometimes, listen to you and share your worries and fears.

'In my experience I find that the truth dawns gradually on many, even most of the dying, even when they do not ask and are not told. They accept it quietly, often gratefully, but some may not wish to discuss it, and we must respect their reticence.'

Dame Cicely Saunders, founder of the hospice movement.
















Facing an uncertain future
No one can predict how long you will live. Even if one of your doctors has told you that you have 6 months to live, (perhaps because you asked him or her directly), you need to remember that this is just an estimate, and that you may live longer, or unfortunately you may have less time than this. Even with modern scans and x-rays it is often difficult to tell exactly what effect the cancer is having on your body. This makes it very difficult for your doctors to predict when you are nearing the end of life.

You may find your need for company and activity varies from day to day. Some people find they gradually need fewer people around them. As your energy fades, you may only want your partner or closest family members around you. On the other hand, you may be scared to be alone and want someone with you all the time. Even if you are in a hospital or hospice it is usually possible to arrange this.

There is no 'right' way to die and no 'right' way to cope with the knowledge that you or a partner or friend is dying - only what is right for you. It is up to each person to try to come to terms with approaching death in their own way, at their own pace. Many people do eventually find a sense of peace and appear to be ready to 'let go' when the time comes. Tears are very natural and you don't have to put on a brave face. If you disguise your feelings, you and the people you love do not get an opportunity to say what is in your hearts.

Although death is the final loss, where you finally lose contact with all your family and friends, other losses happen slowly throughout your terminal illness, such as stopping work and stopping driving. Although this slow process may help in allowing you to get used to the idea of death and gradually disentangle yourself from life and commitments, it can also make you very sad and depressed. Although we have very supportive services for relatives who are bereaved, we often forget that the dying person also needs to spend time grieving for the things which are lost.

If you find that you need to talk about how you feel, and you find it difficult to talk to those closest to you (perhaps because they are too upset), talking to a trusted friend or a counsellor may help.

Spiritual and religious comfort
Many people find that they become more aware of religious beliefs or spiritual feelings during this time. People with strong religious faith are often greatly sustained during illness. Others start to question a lifetime faith. Others again may find that, perhaps for the first time in their lives, they need to think about and discuss spiritual issues. You may start thinking about whether there is a life after death. You may find comfort in prayer or meditation. Many people gain a great deal of support from knowing that other people are praying for them.

Don't be put off talking to a chaplain, minister, priest, rabbi or other religious leader just because you have not attended services regularly, or because you are unsure about what you believe. They are used to dealing with uncertainty and with people who are distressed, and may be able to help you find peace of mind.

Unfinished business
Many people find that when they are told that they will not recover from their cancer, they are overcome by thoughts of all the things they still want to do and unfinished business which they need to sort out. The most important advice at this stage is to go ahead and do all the things which you are fit enough to enjoy. This is not a time for delaying - if you really want to do something, then do it and enjoy it now!

In addition to dealing with your practical and financial affairs, you may find that there are also emotional loose ends you want to tie up - for example old friends you want to see, wrongs you want to put right. If you would like to settle old quarrels, you could try writing or telephoning the person and explaining about your illness and asking them to visit or get in touch. Approached with this openness, old hurts can often be healed, and you can end up feeling much more peaceful.

You may find yourself thinking a lot about the past, talking about shared joys, fears and regrets, and going over old events in your mind or through photo albums. If you feel well enough, you may want to visit 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 are no longer there. You may like to write letters to people who are dear to you, or perhaps prepare a tape, to be given to them after your death. Some people like to write down some of their family history for the next generation or to prepare a scrapbook for their children or grandchildren, perhaps getting the children to help.

These are sad tasks but they can also be satisfying as they give you an opportunity to reflect on the kinds of things that have happened to you, both good and bad. They may even result in some laughter and light-hearted memories. The important thing is to do what feels right for you, when it feels right. This may even be ignoring or completely shutting out your impending death until you can do so no longer.



















Choosing where to die

Many people will want to die at home, in their own bed, surrounded by their close family. However, this may not be possible, or indeed practical, and in reality only a small proportion of people die at home. At this time good nursing care, emotional support and the expertise of those trained to help with your symptoms will be particularly important. You will want to be surrounded by people and possessions which are dear to you. These needs can be provided in a variety of places, not just at home.

Hospices are places which specialise in the care of people living and dying with cancer. The emphasis is on controlling pain and other symptoms and supporting the patient and their family. Their philosophy is neither to hasten nor postpone death but to enable dying people to live in physical comfort with personal dignity until death. Hospices are smaller and quieter than hospitals, and often work at a gentler pace. People often go into hospices for short periods for their symptoms to be monitored or to give their carer a break ('respite care').

Nursing or residential home
However, if you will need an extended period of basic nursing care, then care in a nursing home is likely to be more appropriate. You may still be able to attend the hospice for day care, or the nurses from the hospice may be able to visit you in the nursing home. Private nursing homes usually offer short stay or long stay care. Your GP, district nurse or social worker can arrange this for you, but this may take some time. A fee is charged for care in private nursing homes, although you can sometimes get this paid for you if you have little or no savings.

Alternatively, if you have been in and out of hospital over the last few months, you may be happier knowing that you can return to your usual hospital ward when you need full time nursing care. However, this may be more difficult to organise if there is great demand for beds. Also, a busy medical or surgical ward may not be the most peaceful place to die.

Staying at home
If home is where you want to be, it is important that you and your carers have as much support as possible. Caring can be hard work, both physically and emotionally. It's not always easy to ask for help, and many people find it impossible. However, it is important that your carers preserve enough energy to do the things that only they can do, such as spending time talking to you and supporting you, and pass on some of the other jobs where possible.

Access to other help can be provided by your GP, district nurses, specialist nurses and home care teams from the local hospital or hospice. If you need a commode, bedpan, bottle, special mattress or incontinence sheets then ask your district nurse. Care at night (nurses or night sitters) may be available in your area. Volunteers from local organisations may be available to sit with you while your carer shops, or they may be able to do the shopping.

Your carer may feel he or she can continue to provide all your care, so it should be a joint decision to ask for help. You need to make the opportunity to talk through what may happen with your GP or the hospice home care team, and make a plan for dealing with emergencies which may occur. You need to know how to reach the out of hours doctor, or if you are being looked after by the hospice home care nurses, then how to contact them in the middle of the night or at weekends. This means you should be able to sort out most problems at home and will not end up being rushed into hospital, and being looked after by doctors and nurses who may not know you.

Often the choice of where you will die is a compromise between what you want and what is possible. If you are a carer reading this, it is important that you don't feel guilty if you encourage your loved one to die in a hospice, hospital or nursing home. And if you have to make the decision to move your loved one at a late stage, then this must not be seen as a failure, but rather a desire to ensure that your loved one gets the expert care that he or she needs at this time.











Symptom control

This section describes some of the symptoms which may occur during the final stages of cancer. Some are caused by the cancer itself while others are the result of treatment. You may experience one or more of these symptoms, or none at all. However, any that do occur may be controlled with help from the nursing and medical team caring for you.

Many people are frightened of pain. However we now have a better understanding of the causes of pain, with new and more effective ways of treating it, so there is rarely any need to suffer uncontrolled pain at any time. Everyone feels pain differently and even people with the same disease have very different experiences. You therefore need to help your doctors and nurses to understand your pain so that they can treat it effectively.

Many people believe that they should put off using painkillers for as long as possible, only seeking help when their pain becomes unbearable. This is simply not true. There is a whole range of effective painkillers for different types and severities of pain so there is no need to save them until your pain is severe. Some types of pain are more difficult to treat and therefore do not be surprised if your doctor gives you other types of drugs to take as well as your painkillers. Anti-inflammatory drugs, antidepressants, anticonvulsants (usually used to treat epilepsy) and muscle relaxants all help with different types of pain.


  • Anti-inflammatory drugs      Diclofenac  Ibuprofen
  • Anti-depressants                  Amitryptiline
  • Anticonvulsants                  Carbamazepine

If you have frequent or constant pain it is important to take painkillers regularly. Each dose of the painkiller should be enough to control your pain right through to the next dose. If your pain returns before your next dose is due, be sure to tell your doctor so that a more effective dose or drug can be used. It may take a few days to get the drugs and doses right, so be willing to persevere and don't suffer in silence!

Strong painkillers have three common side effects - drowsiness, sickness and constipation. The drowsiness will usually wear off after a few days, so that it should be possible for you to be pain-free and yet still alert enough to do all that you want to do. If you feel nauseated, anti-sickness pills can help in the short term, and you will usually find that the nausea settles gradually over a few days. Constipation is so common that everyone taking strong painkillers should take a laxative regularly; many people need one which softens the stools and stimulates the bowel, moving the stools along more quickly. Ask your doctor or pharmacist for advice. Don't be afraid to vary the dose to keep your bowels moving easily.

Most painkillers are available in liquid form if swallowing is difficult or one type of painkiller can be delivered through a patch stuck on the skin. If swallowing is not possible, or if you are drowsy or confused and not keen to take anything by mouth, giving the painkiller continuously through a tiny needle inserted under the skin is often very effective. Enough painkiller for 24 hours is made up and a syringe driver or small portable pump is used to inject the drug under the skin. A syringe driver is very easy to set up and there is no need to insert it into a vein or worry about it becoming dislodged. If you are up and about, the syringe driver can be carried in a special pocket, or if you are in bed then it can sit on the bedside table. Other medicines, for example to treat sickness, can also be delivered with the painkiller.

'Getting addicted' is a common worry. However, there is no danger of becoming hooked on drugs such as morphine when you need them to help control your symptoms.

Strong feelings such as fear, anxiety, depression and tiredness can make your pain worse. Therefore it is important to try to treat the emotional as well as the physical causes of your pain. Learning to relax and get rid of some of your fears and anxieties, if only for short periods of time each day, can play a very useful part in controlling your pain. You can relax by becoming aware of different groups of muscles around your body and learning to relax them so that you can do this consciously when you are under stress or in pain. Visualisation helps you to bring happy relaxed pictures into your mind and use them to help you distract yourself and overcome some of your pain. Massage with soothing aromatherapy oils can help you relax.

Feeling sick
If you feel sick or have trouble keeping food down, your doctor can prescribe an anti-sickness drug to help. These may be tablets, or suppositories which are inserted in your back passage (these are useful if you cannot manage to swallow tablets because of your nausea). Like pain tablets, anti-sickness drugs should be taken regularly to prevent the nausea returning.

Eating problems
Many people lose their appetite and perhaps feel sick much of the time as well. These may be the symptoms of the illness itself or the result of treatment, such as radiotherapy and chemotherapy. You may be put off even by the sight and smell of food and your worries about this final stage of your illness may make things worse.

Small frequent simple meals, concentrating on your favourite foods, are likely to be most tempting. Our section on diet provides hints and advice on coping with eating problems. Your metabolism has slowed down so don't force yourself to eat. Simple fluids may be all that you need to keep you comfortable. You may notice that your mouth feels very dry. This is not a sign that you are dehydrated or necessarily need more fluid, and usually it is not helped at all by pushing yourself to drink more.

You may want to try sucking pieces of fruit such as pineapple, or your carers can make fruit juices into ice lollies or ice cubes which you can suck to moisten your mouth. If the dry mouth is interfering with your ability to eat or talk, artificial saliva spray or lozenges may help.

Fatigue (feeling exhausted all or most of the time) is a common and difficult problem. It can be caused either by the progress of your disease or as a result of coping with your other symptoms, such as pain. If you do feel tired, it is important to pace yourself and to save your energy for the things which matter to you and which you enjoy. Don't waste your energy on duty things like doing the vacuuming or cutting the grass - be willing to let other people tackle these if they offer. Just work within your limitations. But remember you will not do yourself any harm by doing too much - you can simply rest and relax a bit more tomorrow.

Fatigue and weakness can make it harder for you to concentrate and engage fully in what is going on around you. Therefore if you have important things to do to put your affairs in order, it is best to do them as soon as possible. This will have the added advantage that once they are done, you can relax.

Treatable complications
There are certain complications of your cancer which your doctors may want to treat even at a late stage, as treating them can dramatically improve the quality of your life. These include:

  • High calcium levels (hypercalcaemia) can cause feelings of sickness, vomiting, confusion, constipation and lowered ability to cope with pain. A few days treatment in hospital with a group of drugs called bisphosphonates given in a drip will bring the levels down.
  • Severe anaemia can make you very tired and breathless (although these things can also happen even if you are not anaemic). A 'top-up' transfusion of blood may make you feel better very rapidly.
  • Infections of various kinds can make you feel very unwell but they will usually respond to antibiotics given by mouth or by drip.
  • Fluid retention (collections of fluid around your heart or lungs or in your abdomen) can make breathing difficult, and can make you feel bloated and uncomfortable. Removing some of the fluid through a drainage tube may make you much more comfortable. This may need to be repeated if the fluid builds up again.
  • Bed sores are common when you spend a lot of time immobile in bed or in a chair. The use of special mattresses and sheepskin heel protectors can help to prevent these.
  • Agitation and confusion due to severe pain or a full bladder can be improved by treating the pain or emptying the bladder by inserting a catheter. Having a catheter will mean that you no longer have the inconvenience of trying to use a bedpan or bottle if you can't get out of bed. If the agitation is due to breathlessness, oxygen may help. Your doctor can organise this on prescription.













Putting your affairs in order

Making a will
It is not morbid to be concerned about what will happen to your possessions after your death, nor will it hasten your death. It is a thoughtful and effective way of taking care of the people you love and it will spare them painful decisions, bureaucratic hassles and financial hardship which may occur if you do not make your wishes clear. You may also find that once you have put your affairs in order, your mind is cleared of many niggling little worries, leaving you free to enjoy the present.

Making a will is not as expensive or difficult as you might think, but it is a legal document and must be properly prepared. It is usually better to use a solicitor who will be able to help with the precise wording to accurately convey your wishes and ensure that they are carried out exactly as you intended. NB This is not the same in France

Living wills and making choices
As the law stands, assisted suicide and all similar processes whereby one person hastens another's death are illegal. Although your doctor and nurses can ensure that you are receiving enough pain relief to keep you comfortable, it is illegal for them to give you more than you need with the intention of ending your life more quickly.

However, there are other important choices which you can make in the late stages of your disease. You can decide in advance what treatment you will refuse, for example that if you have a sudden deterioration, your breathing stops or your heart stops, you do not want to be resuscitated.

If you are in hospital, the doctors may discuss this with you. You can also decide that if you are severely ill and develop an infection, you do not want to prolong your life by taking antibiotics. You can discuss these things with your relatives and the medical team looking after you, and formalise your wishes in a 'living will'.

A living will or advance directive allows you to leave instructions about your possible medical treatment in case there comes a time when you are no longer capable of making decisions or communicating them. It allows you to say no to a particular treatment, but can't be used to force your medical team to provide a particular treatment. There is no law that governs the use of living wills. However, in common law refusing treatment beforehand will have a legal effect as long as:

  • you are over 18
  • the will was made when you were mentally able
  • you had not been pressurised or influenced in your decision
  • you are now unconscious or otherwise unfit to make a decision.

From your close relatives' point of view, things may seem very different to your own perspective. For example they may treasure every possible minute of your life, even though you may be in a coma or unable to respond to them. If possible, it is good to have an honest and open discussion with your partner, relative or closest friend in advance, so that they know and understand your wishes.

It is important to understand that living wills are entirely different from voluntary euthanasia and assisted dying. These are controversial and cause many strong feelings.

Living wills by contrast are widely accepted as a humane, sensible way of following the true wishes of people who are dying. A number of recent judgements have upheld living wills. The concept of living wills is supported by the British Medical Association, the Patients' Association, the Royal College of Nursing and the Government.










What happens at the end of life?

People who have survived a near-death experience tell very different stories about their experience of being 'dead'. Although many describe moving towards a bright light and a very welcoming environment which they find hard to resist, others describe sinking or floating into nothingness.

The last weeks
It can be hard to understand how cancer can kill you. In the early stages of having cancer, your body's own immune system, together with any treatment you are receiving, can keep the cancer under control. As new cancer develops, your doctors will have suggested treatments such as radiotherapy or chemotherapy to help your body fight the disease. However, eventually the cancer grows so rapidly that it takes control. The cancer gradually uses up all your energy, leaving you exhausted and no longer able to fight. No matter how much you eat, you begin to lose weight. Your appetite for your favourite foods disappears. When this happens, just trying to carry out ordinary daily activities such as getting up and dressing make you feel exhausted. Your muscles shrink and you become weaker. Eventually, just staying awake becomes too much of an effort and you find you spend more of your time sleeping or drifting in and out of consciousness. The majority of cancer patients are unconscious when they die.

As with all other seemingly healthy people, there is a small risk that you may die suddenly. However, a gradual decline is much more common. Because of this uncertainty, it is always better to do important things such as getting your affairs in order sooner rather than later. Then you can relax and enjoy the time you have left.

The last few days

In the later stages of cancer, several different organs may be affected. Cancer in the liver can cause swelling and discomfort in the upper abdomen; the patient may also become jaundiced (yellowness of the skin, eyes and urine). Cancer in the lungs can cause cough and breathlessness. Cancer in the abdomen can cause kidney failure or blockage of the bowels. When any of these changes is severe enough to prevent the normal body functions, the result is a build up of toxins. Cancer in the brain can cause headaches, confusion and unsteadiness. Any of these can cause you to become drowsy, then drift into a deepening coma.

At times you may become confused, and not recognise your loved ones, or hear or see things which are not there (hallucinations). This is usually much more frightening for your family and friends than it is for you. The drowsiness and hallucinations are usually partly due to the build up of toxins, partly to your profound weakness and partly to the medication you need to keep you comfortable. At this stage food and drink are not necessary as your body is no longer able to benefit from them. Moistening your lips or mouth are all that is needed.

Occasionally a dying person remains aware and able to talk right up until very close to the end, and can have a meaningful conversation with loved ones. However, this is the exception rather than the rule, and you should say all the important things much earlier - repeating them if you have the opportunity.

Even though you are unconscious during the final hours or days of life and will not be able to respond to your loved ones, it is likely that you will still be aware that they are there with you and you may be able to hear what they are saying. This will be very reassuring and comforting for you. For most people, the final moments of life are very peaceful, with a gradual slowing and irregularity of breathing, before it stops. With some people this seems to take a long time, while others slip away quite quickly.

If you practice a faith where the moments leading up to death and the actual moment of death are vital for your future, this time needs to be spent as peacefully as possible. It is therefore important that those who are looking after you are aware of your needs, and that they understand that you will not want to be disturbed in any way for some time before or after death.

The staff in hospital or hospices will try to find out what is appropriate for people of different cultures in their final hours, but it may be easier if you or your family make staff aware of your needs. This will allow them to make arrangements for your spiritual or religious adviser to visit if you feel that this is helpful, and to ensure that your body is treated in the appropriate way after death.










After death

'I wish we'd spent more time preparing for his death. We knew it wasn't far away but somehow couldn't bring ourselves to discuss it with each other or anyone else. I think it would have been easier if we had talked about it. As it was, I had to make the decisions all at once, after he died.'

While the first part of the dying with cancer section is written for the person who is dying, this section is written for the partner, relative or friend. However, you may want to read this section together and discuss the plans well in advance. As with making a will, this will not speed up death, but will make things a lot easier for those left behind. To undertake advance planning of the funeral and financial affairs, and then, having done it, put it to one side, often enables a person to concentrate all the more on living.

Dealing with death
If you think the person you are caring for has died, try not to panic. However well you have prepared yourself it will still come as a shock. You may feel confused and bewildered. If you are inexperienced at feeling for a pulse, anxiety may make it even harder. If you are in a hospital or hospice, the nursing staff will be nearby. If you are at home, let your doctor know straight away. Your GP, or someone who is covering for him or her, will come as soon as possible. If you are alone, ring a friend or relative to come and be with you. You may want your minister or religious leader to be with you as well.

During the first few hours the loss of your loved one may seem very unreal, yet there are important actions which you need to take. However, it is important that you do not feel rushed to 'get on with things' if you want to spend some quiet time with the person who has just died. Many people like to sit and talk or hold hands, and value seeing their loved one at peace, especially if the last few hours or days have been a strain on you both. In many religions this is a time when there is much that those who have been left behind need to do to help their relative or friend to pass onwards. So please feel comfortable to let instinct take over, and do what you feel is appropriate.

You might then want to help to lay out the body. In a hospice or hospital the nurses will usually do this, but they will be happy to let you help. At home the undertaker will show you what to do. This process is different for different religions but may involve carefully washing and drying the body, closing the eyelids, and making sure the mouth is supported closed. The hair is tidied and sometimes washed.

Certification and registering the death
A doctor needs to certify the death. As soon as this has been carried out, you can go ahead and contact the undertaker. All undertakers provide a 24 hour service, although you may choose to wait until morning if the death has occurred during the night. You will find that your undertaker can answer most of the questions you have. You will need to wait until you have spoken to your own doctor and he or she has decided whether a post-mortem will be required (see page 33), before you set a date for the funeral or other service.

The doctor will usually issue a medical certificate of the cause of death, together with a slip of paper 'Notice to informant' which describes the information you will need to register the death. If a post-mortem has been arranged, a certificate may not be available until later. You need to take this certificate, together with the birth and marriage certificates, to the registrar's office in the sub-district where the death occurred within five days (eight days in Scotland). The registrar will ask you several questions about your loved one, and look at all the documents you have brought with you. He or she will then enter the details in a register which you will need to sign. A certified copy of the entry in the register, commonly known as a 'death certificate', will then be completed. NB This is different in France

Some registrars' offices now operate an appointment system, so check before you go. (You can find the number of the local registrar's office listed under 'Registration of Births, Deaths and Marriages' in the Business section of the ordinary phone book and it may be on the envelope containing the medical certificate). If you are not able to attend yourself, several other people could act as an 'informant' and register the death for you. Details of who can act as an informant are listed on the back of the 'Notice to informant'. These include a relative of the deceased who was present at the death or during the last illness, or a person who is not a relative but who was present at the time of death. Slightly different information is required when registering a death in Scotland, so read the details of the 'Notice to informant' carefully and make sure you have all the information before you go to the Registrar's office. If you cannot find some of the documents, you may be able to register the death and take them in at a later date.

Before you attend the registrar's office, it is helpful to know how many copies of the death certificate you need. These so called 'certified copies' (which are duplicate original certified copies of entry, not photocopies) can then be purchased at the time of registration. They cost £3.50* each and you will need to pay for them by cheque - cash and credit cards are not acceptable. They are more expensive and much harder to get at a later date. You will usually need one for each life insurance policy or similar which you need to claim. Other organisations, such as your bank, will just need sight of the original certificate, or will make a copy for their records. The executor, if there is a will, can help you work out how many copies will be needed.

The registrar will give you a green certificate to say that the death has been registered and that the funeral can take place. You need to give this to the undertaker. The registrar will also provide a form for Social Security purposes.

It is useful to have a copy of the booklet When someone dies (available from your local social security office) to consult, as this outlines all the important tasks you need to undertake at this time. The Consumers' Association publishes a book What to do when someone dies which is available in most public libraries.

Although in most cases when someone dies from cancer a post-mortem will not be required, there are occasions when it is very helpful. For example, the cancer may have been diagnosed at an advanced stage and only the secondary tumours identified. A post-mortem may show where the cancer started. This may be information which you will want to know, to help you understand exactly what happened. People who die from a mesothelioma cancer need a post-mortem as this is an occupational disease. A post-mortem may also be required for anyone who has ever been a miner and for some other groups of people who are claiming occupational compensation. Remember that you can agree to a limited post-mortem, where only the relevant parts of the body will be examined. This may feel like a more acceptable option, yet it will still allow the doctors to get the answers needed. A post-mortem can usually be done within two or three days and should not delay the funeral.

Funerals and other religious services
We live in a multi-cultural and multi-faith society, and each group has its own traditions and ceremonies. Some people have no religious beliefs, while others will have lived their lives as humanists, agnostics or atheists. There are people within the various humanist organisations who will lead a funeral service or will give help in planning a humanist funeral. Sometimes those who are confirmed atheists or agnostics choose to have their funeral conducted by a religious leader out of respect for them as individuals. However, it is not necessary to have a religious leader to conduct a funeral. Your chosen undertaker will lead you through issuing the death notices, planning the funeral and arranging for you or other family members to view the deceased at their chapel of rest if this is what you and your loved one wanted.

If you and your loved one have not had the opportunity to discuss his or her choice of burial or cremation, and there is a will, it is important to consult the executor to see if the will provides this information. If you had the opportunity to discuss plans for the funeral before death, this makes it much easier to be sure you are arranging a service of remembrance which would have reflected your loved one's wishes. Some people also have strong views on what clothes they wish to be buried or cremated in. Do not let anyone, however well meaning, talk you out of what you have agreed.

















Deaths in France – Judicial and Other Procedures
The death of a relative or a friend can be a traumatic experience. When the death occurs overseas, family and friends in the UK can feel additional distress as they are unfamiliar with foreign procedures may be unable to communicate in the language of the country where the death occurred. Consular Division of the Foreign and Commonwealth Office and our Consulates in France are ready to help in any way they can.  French procedures differ significantly to those in the United Kingdom and, while you may want to make arrangements quickly, this is not always possible.

Repatriation and Burial

A relative or a formally appointed representative must instruct a funeral director in France or the UK for a body to be repatriated to the UK or buried or cremated in France. If the deceased was insured you should contact the insurance company so that they can make the necessary arrangements. If there is no insurance cover, funds for repatriation or burial will need to be met by the family.

A medical certificate certifying the death is issued by the local doctor and serves as a burial permit.  A death is registered at the Mairie (Town Hall) in the locality in which it occurred. A relative or their formally appointed representative usually registers the death. This, however, can also be carried out by a local firm of undertakers. A certified copy of the entry is usually issued immediately if all necessary details are available. No fee is charged for the medical certificate or for the registration. French death certificates, however, do not show the cause of death. In France there is no central registry corresponding to the General Registry Offices in the United Kingdom.

Although not obligatory, it is possible to register the death of a British national who has died in France at the British Consulate general in Paris. This service carries a statutory consular fee and full details can be obtained on request. Click here for details

When a body is repatriated to England or Wales from France, a Coroner will only hold an inquest if the death was violent or unnatural or sudden and the cause unknown. As the cause of death is not given on the French registration certificate, the Coroner may order a post mortem as part of the inquest (even if a post mortem has already been carried out in France). The Coroner does not have access to the French judicial file. He may however request a copy of the French police and post mortem reports through Consular Division. However these reports will only be provided once the judicial process, if any, has been completed and the death is no longer subjudice. In some cases this can take several months.

If there is no requirement for a Coroner to become involved and a cremation is to be carried out, a cremation order will need to be obtained from the Home Office. An application for the order is usually made by the local undertaker. There is no equivalent order required for burials. Coroners in N. Ireland are not obliged to hold an inquest into the cause of death, but next of kin can apply for a judicial review if an inquest has been decided against.
Under the CREMATION (SCOTLAND) REGULATIONS 1935 AND 1952, a permit for cremation must be obtained from the Scottish Office in Edinburgh. Coroners do not exist in Scotland and there are no special formalities for a burial there.

Police/Judicial Inquiries
Inquiries are not held when the doctor who certifies a death is satisfied that no suspicious circumstances exist and the death was due to natural causes. However, an inquiry is held when the death occurs in a public place, e.g. in the street or at a hotel, or when foul play is suspected. In such cases the responsibility for issuing the burial permit lies with the Public Prosecutor (Procureur de la Republique) at the local high court (Tribunal de Grande Instance).

Useful Addresses

Foreign & Commonwealth Office
Consular Division
Old Admiralty Building
London SW1A 2PA
Tel. 0033 207 008 0226/0205
Fax. 0033 207 008 0162
British Embassy Paris
Consular Section
16 rue d'Anjou
75008 Paris
Tel. 01 44 51 31 00
Fax. 01 44 51 31 27
British Consulate-General Lille
11 square Dutilleul
59800 Lille
Tel. 03 20 12 82 72
Fax. 03 20 54 88 16
British Consulate-General Lyon
24 rue Childebert
69002 Lyon
Tel. 04 72 77 81 70
Fax. 04 72 77 81 79
Incorporated Law Society of Northern Ireland
Bedford House
16-22 Bedford Street
Belfast BT2 7FL
Tel. 0033 1232 246441
Fax. 0033 1232 332548
Scottish Legal Aid Central Committee
44 Drumsheigh Gardens
Edinburgh EH3 7SW
Tel. 0033 131 226 7061
Fax. 0033 131 220 4879
British Consulate-General Marseille
24 avenue du Prado
13006 Marseille
Tel. 04 91 15 72 10
Fax. 04 91 37 47 06
Law Society
113 Chancery Lane
London WC2A 1PL
Tel. 0033 207 242 1222
Fax. 0033 207 831 0344
Institut National d'Aide aux Victimes et de Médiation
14 rue Ferrus
75014 Paris
Tel. 01 45 88 19 00
Fax. 01 45 89 94 02
British Consulate-General Bordeaux
353 boulevard du Président Wilson
33073 Bordeaux Cedex
Tel. 05 57 22 21 10
Fax. 05 56 08 33 12
Home Office
Coroners Unit
50 Queen Anne's Gate
Tel. 0033 207 273 3560
Fax. 0033 207 273 2029
Scottish Executive
Public Health Policy Unit
St Andrew's House, Regent Road
Edinburgh EH11 3XD
Tel. 0033 131 244 2501
Fax. 0033 131 244 2157










Getting a death certificate


Death certificates are obtained from the La Mairie where the death occurred.

 The request must include:

(a) the full name of the deceased;

(b) and the date and place where the death occurred.

The request must be accompanied by a self-addressed, stamped envelope. There is no charge for a copy of a death certificate.

How to register a death in France
If you wish to register the death of a British National in our Consular Register please complete and print the Death Registration Form and return it to The British Embassy, Consular Section, 35, rue du Faubourg Saint Honoré 75008 Paris with the person’s local death certificate, birth certificate and passport. These documents will be returned to you.

(see link for registration form)

The fees payable are as follows:

Registration of death 88.00 Euros (2006)

Each death certificate 56.00 Euros (2006)

Customers are able to pay the above fees by personal cheque drawn on French bank accounts. Cheques should be made payable in Euros to "British Embassy Paris". Payments can also be made by mandat-cash obtainable from French Post Offices, also made payable to the "British Embassy Paris". Personal callers can pay by cash, cheque and most debit/credit cards.











Death of British persons in France
  • In the event of a death, first call a doctor to certify the death and an undertaker to take care of the body.  The death must be declared to the local Mairie within 24 hours. The declaration can frequently be made by the undertaker.  The doctor's certificate and the deceased's identity papers will be required.  Among other things, the Mairie will want to know the names of the deceased's parents (including the mother's maiden surname), in the case of a married woman her maiden name, and in the case of a married man or woman the full names of his/her spouse.  When the death has been registered, it is advisable to have several copies of the local death certificate issued, as they will be needed in several instances (undertaker, Social Security, pension, estate purposes, etc.). The Mairie can issue a multilingual version of the death certificate (formule plurilingue del'acte de décès). 
  • Disposal of the body. The usual possibilities are: a) local burial; b) local cremation; c) return to the UK for burial; d) return to the UK for cremation; e) donation of the body to medical research. In the last instance, arrangements will normally have been made in advance, and it will suffice to inform the relevant establishment of the death as soon as possible.
  • Local burial or cremation is handled entirely by the undertakers.  If repatriation to the UK is requested, the decision on burial or cremation (if it has not been taken in advance) must be made promptly and the local undertaker informed, as the preparation of the body and the type of coffin required depend on this decision and on the means of transport (by air or surface). For local burial or cremation it is normally satisfactory to use the services of a local undertaker.  Cremation must be requested in writing by a member of the deceased's family, and a medical certificate of no impediment produced. 
  • For repatriation to the UK it may be wiser to use a larger organisation such as the PFG (Pompes Funèbres Générales) who are more familiar with the procedures for international transport. The documentation which must accompany the coffin for burial is simple, but for cremation the documentation is more complicated, which means that there is usually a delay of about a week before the coffin can be sent.  It is important to be aware of this, as the delay is not always understood by grieving families and can give rise to added distress and unwarranted complaints.
  • In all cases, the documentation should include a doctor's certificate giving the clinical cause of death and not merely the description (e.g.  natural causes) or the circumstances (e.g.  accidental death).  Failing this, permission for burial or cremation in Britain will normally be withheld until a post-mortem examination has been carried out.
  • Consular assistance: The Consulate may be able to help by contacting relatives in case of difficulty, or by relaying instructions to undertakers and liaising with a UK undertaker in the event of language difficulties.  It cannot pay funeral or repatriation expenses.
  • Registration of the death: Local registration of the death is obligatory, and is done at the Mairie of the commune where the death occurred, frequently by the hospital or undertaker.
  • Registration at the General Register Office in Britain is not obligatory, but may be advisable when, for instance, an estate is to be settled in the United Kingdom.    Application can be made to the British Embassy in Paris, or on return to Britain, to the Nationality and Passport Section, Consular Division, Foreign and Commonwealth Office, Old Admiralty Building, London SW1A 2AF.