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.
Introduction
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.
Partners
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.
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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.
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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.
Hospice
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.
Hospital
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.
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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.
Pain
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.
OTHER DRUGS USED
TO HELP RELIEVE 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
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.
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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.
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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.
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'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.
Post-mortem
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.
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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
Coroners
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
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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 |
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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 |
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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
London
SW1H 9AT
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 |
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Getting a death
certificate
DEATH CERTIFICATE (Acte de Décès):
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.
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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.
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