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Am I going to die? Living with a

progressive disease
This page had been written for those travelling the emotional journey of living with a life
threatening progressive disease. It is hoped that it will be useful for those living with
HIV/AIDS, cancer, or some other life threatening progressive disease, as well as those
affected as friends, relatives or carers.

The Starting Point

For most people the starting point is the news of diagnosis. But bad news can also come
at other times, whether it is when HIV infection develops into AIDS, when cancer recurs,
or when someone is told that their treatment hasn’t worked.

Being told the news

On hearing bad news many people assume that they are likely to die much sooner than
they previously expected. But it is possible that the person’s life is not going to be
significantly shortened at all. For example, if a person has been newly diagnosed with
cancer a complete cure may be possible, or if a person has been diagnosed with HIV and
antiretroviral drugs are available, the person may go on to eventually die of old age.

Sometimes people will ask a direct question such as:

Am I going to die? or How long have I got?

Faced with the possibility of a premature death, they want to know how long the rest of
their life is likely to be. But whilst some people may want a prognosis, others may not
want such further information at all.

“I am an asker, a seeker of information. I always want to know exactly what is going on

and the best way to deal with problems. Or I did. When it came to my cancer, the asking
came and went, and still does. The dance, the dance in which everyone knows that there’s
only one real question – am I going to die? – is hard to bear. So sometimes I asked many
questions, other times I said nothing.” 1

What is a prognosis?
No doctor or other health professional can tell anyone exactly how long the rest of their
life is going to be. But a patient can be given a prognosis, which medically is a forecast of
the likely outcome of an illness or disease. However, a prognosis is only based on the
average length of time people with a similar condition usually live. Many people can
expect and indeed will live for longer than the average, whilst some people will live for a
shorter time than the average.

“You may well die of old age”

Many health professionals find it very difficult to answer patients' queries about
prognosis, and some will try to evade such questions. But they should be prepared to
answer if asked directly as some people do find a prognosis helpful in planning the next
part of their life.

You might receive the answer: “You may well die of old age”

This means they think you will be cured, or your cancer will be in remission, or that with
HIV/AIDS that you should be able to lead a good quality of life for many years if you
take antiretroviral drugs.

If the news is not quite as good, a helpful prognosis is still likely to be given as an
approximate number of months or years, rather than anything more specific, for example:
“five years or maybe it could be ten”, although sometimes a doctor will need to give the
reply: “a year, or possibly two.”

But a prognosis is only an average and is never going to be exact.

Coping with bad news

“I realized at that moment that life as I knew it would never be the same”

There are many different emotions that you many feel. You may feel angry, afraid, sad,
worried, scared, lonely, fearful, or even relieved. You may want to scream, shout, or cry.

People react in many different ways when they are given bad news, and there is no one
right way to react. Over time you’ll find a way of dealing with it that suits you, but it
might be quite different to the way other people cope.
“When you first get the news, it's like you've been hit in the stomach and you're so full of
fear and apprehension and, ‘What do I do? What do I do? What do I do?’” 2

Most people will be shocked and upset, and many will be fearful and possibly angry,
particularly if the news was unexpected. You need to take whatever time you need to
think about what you want and need to do.

“If you give it a couple of days and let it settle in, then you can begin to absorb the
information and deal with it. Hang on during that awful, awful, overwhelmed period.” 3

Talking to the doctors

When you were given the news you were probably given other medical information at the
same time, perhaps suggestions about drug treatment or an operation. You may well find
that you don’t remember much else of what was said, because you were so shocked, and
you will probably need to ask for the information again.

How much medical information you want is entirely up to you to decide. But whatever
you decide you want, it is important to be clear about what the doctors are saying. For
example, are you being offered treatment that has the aim of curing your disease, or of
significantly extending your life, or is its aim palliative, to alleviate the symptoms of your
disease.

More about palliative care

Palliative care aims to provide the best possible quality of life for a patient as well as for
their family. A major part of palliative care is the control of pain and symptoms, but
palliative care also refers to the total care of a patient, and psychological, social and
spiritual support are all considered important.

Until recently palliative care was provided when a person was nearing the end of their
life, and when treatment that aimed for a cure was no longer possible. As a result many
people have come to associate palliative care with end of life care. But it is now realised
that many aspects of palliative care are useful earlier in an illness, whilst attempts to cure
are still ongoing. For example, palliative treatment which aims to control pain, may be
provided alongside radiotherapy or chemotherapy that aims to cure.

So if you are offered the opportunity to talk to a member of a specialist palliative care
team, it does not mean that you are about to die, or that a cure is no longer possible.

Who should I tell, who can I talk to?

Different illnesses can bring particular worries about who you tell and how.
“At first I told no one, not even my partner, and my family still have no idea, but I want
my friends to know, even though actually telling them is so difficult. I find myself
sounding out their views, how much they know about AIDS, whether they would realize I
am no threat to them, how discreet they will be.” 4

Should I talk to my children?

“not talking may suggest that it is too terrible a subject to be discussed”

There are a number of reasons why it is important to talk to children. Children tend to
sense when something is wrong and not talking about a serious illness in the family may
suggest that it is too terrible a subject to be discussed.

Children also have an ability to deal with the truth which adults sometimes
underestimate. Not knowing things can make them feel anxious, and even sad truths will
be better than the uncertainty of not knowing what is happening. 5

What should I say to my children?

The advice that is usually given is that you should explain to a child that you are ill and
tell them generally what you think may happen. You don’t have to tell them everything at
once, you can give a bit of information at a time. Generally it is best not to offer more
information than is asked for, and to let them ask questions at their own pace. If you
don’t know the answer to something they ask, you can say that you don’t know.

Children can be helped by honesty as Christopher explains.

“My father’s illness and death were there, no one could hide that or protect us from it. I
remember my dad was very responsible about it, very up-front and honest. He also told
us ‘I love you and you have all these people around you who love you. You’re going to
be OK.’” 6

What should I say to my parents?

For some people talking to their parents can be as important as it is for other people to
talk to their children. Some people may not have seen their parents for some time, they
may have a partner or other important people in their life whom their parents may not
know about.

But sometimes those close to you will surprise you with how supportive they can be.

“I didn't tell my parents for 2 years. I was worried that they would be mad at me, and
would probably disown me. Since telling them, they have been very supportive. My
whole family have been supportive. My best friend has been supportive. I just have been
blessed to have people in my life that have supported me through and through.” 7
Family and friends can help, but they need to know
what to do
Many people’s family and friends will want to help, but in many cases they won’t know
what they can usefully do, and you may need to help them to do what is useful to you, as
well as sometimes to do things that are useful for them. Exactly what this is will depend
on you and your particular circumstances.

Some people prefer to go on their own to see their doctor or other health professionals,
but many people do find it helpful to have someone go with them.

“Take someone with you that can write down the stuff that gets said and can make sure
that all of your questions get asked. It's good to have someone there that can help
remember later and can help remember the questions that you wanted to ask.” 8

“Be honest with people - I hate it when people tell me: ‘It'll be alright.’”

Practical assistance can also be useful.

“It can be very hard to ask for help, so practical assistance is wonderful. Offer to go to the
supermarket, or help with gardening or cleaning.” 9

You may sometimes need to tell people what doesn’t help.

“Be honest with people - I hate it when people tell me: ‘It'll be alright.’ I know they're
only trying to reassure themselves, but it really doesn't help you! Ride with it and
remember that everyone has bad days. Ask for help and support if you need it.” 10

And when people say that they understand how you feel, you may need to tell them that
they don’t.

“I don't think even those close to me really understand how this feels to me, and they're
sometimes shocked at my wicked sense of humour which comes as a result of living with
the disease. I need to make a joke of it, and people can't quite understand that, but it's a
way that I cope. Who knows what tomorrow will bring?” 11

Am I going to be in pain?
Modern methods of pain relief are such that few people should need to live or indeed die
in uncontrollable pain. There are many different types of pain medication from mild
painkillers, to morphine based medication. They can be given so that their effects do not
wear off and pain does not regularly come back.

Some people worry about being offered morphine, as they believe that being offered
morphine means that death is imminent. But it is not the stage of disease, but the level of
pain that determines whether someone is offered morphine. Another myth is that people
who take morphine will become addicted. But people who are taking such drugs for their
pain control, do not generally go on desiring more drugs. Although it is true that the
drugs should not be stopped suddenly, because unwanted side effects can then occur. 12

It is sometimes assumed that pain control is going to be effectively provided, but this
doesn’t always happen.

“Go home, see the doctor and the specialist nurse and they will control the pain with
morphine. But it doesn't work like that; the doctor doesn't give you enough morphine or a
laxative or inform the nurse. Your pain is unbearable, you can only work for short
bursts.” 13

Not all health professionals have a good knowledge of pain control. So if your pain is not
well controlled, or you are having significant side effects, it may be worth getting more
help, possibly from a palliative care specialist.

Where am I going to live?

As a person becomes sicker they may move in with relatives, in order that their family
can provide more help. Although this sometimes can be extremely helpful for both the
person and their family, the effect on everyone needs to be considered before such a
commitment is made.

“Alexander lay upstairs in bed, day in, day out. Generally he slept, he caused no trouble,
but he was there. He was forced to go to the toilet several times a night. Where before
silence had reigned, doors now banged shut and his crutches tapped on the wooden floor.
The bookcase and cupboard in his room now accommodated nothing but medical
supplies, and all the familiar objects of our everyday life had been moved, muddled up or
simply disappeared.” 14

Relatives may often provide nursing care.

“My mother became his nurse as he became ever weaker, eventually unable to walk. A
stair lift was installed in their house, a special armchair was bought. A walking frame and
wheelchair were delivered.” 15

But sometimes if there is insufficient help from other people, relationships can be
stretched to breaking point, and beyond.

“I hate nursing and caring for him whenever he becomes sick.I silently pray that he
should die so that I could be able to live the life I want.” 16

It is crucial for everyone that carers are offered and indeed accept extra help before they
start to feel this way. Sometimes carers are encouraged to continue without extra help
because “it is not going to be long now”, but it is never possible to be sure how long it is
actually going to be.

Talking about death

There may come a time when it is clear to you that your illness is probably going to cause
you to have a premature death. This may happen because you are told this by a doctor,
but it may also be a more gradual realisation that this is likely to happen.

It is very difficult for most people to talk about death and dying.

“The days go by, we talk about anything and everything. Everything that is except the
things that we should talk about: what’s going to happen at the end? What does he want
for his funeral?”

But if you can talk it can be a help, not only in respect of talking about the emotions, the
grief and the sadness, and maybe even the fear, but also talking about practical matters.

“[There is] a fear of death; mine and everybody else’s. My experience has taught me that
few people can bear to discuss death, my possible death. The fear is so great that it
cannot, must not be discussed. .. We seem able to talk about sex more nowadays, money,
religion, all the old taboos. But death still scares us witless.”
“I have come a long way in my thinking about death. I know that I do not want to be put
on a ventilator or resuscitated if I become seriously ill. I know where I would like the
funeral service to be held, and I would like flowers, and everyone to dress up, wear bright
colours and I would like lots of people to stand up and say nice things about me.” 17

In some countries it is possible to prepare a “living will” which describes when life-
saving treatment should and should not be given. Also a “durable power of attorney”
allows a patient to name a person who will be able to make decisions about their
treatment when they are not able to decide for themselves. 18

Planning ahead, putting your affairs in order

Not everyone wants to talk in advance about the arrangements they would like for their
funeral, and indeed how it is to be paid for, although there is more discussion about this
in some families, than many people might think.

“Mum and I had spent much time deliberating over which music would best suit her
funeral. Should we go for an outright weepy? Should we go for upbeat? Should it be a
favourite 60s tune?” 19

But people should make sure that they have made a will, and put important papers where
they can be found. In this increasingly electronic age in which many people live, it can
also be helpful to make sure that you are not the only person knowing the password to
online files.

“When my father got cancer, to ask him where he kept the deeds of the house would have
seemed like an admission that he was going to die – and none of us ever acknowledged
that as a possibility. Since his death six months ago, my mother has spent weeks trying to
sort out his affairs. The deeds of the house haven’t turned up, his will is out of date, and
we can’t find the original copies of several insurance policies and investments.” 20

a “memory box”, containing books, letters, photos and other mementoes

It is also important to have made arrangements for the care of children or other dependant
relatives. The other parent will often be the choice for the care of children, but this may
not always be possible or appropriate. Consider who you think would be able to offer
love, warmth, stability, patience, continuing contact with friends and relatives, and seek
the agreement of your chosen guardian. It can also be helpful to then write down your
wishes in your will. 21

For your children it can be helpful to make a “memory box”, containing books, letters,
photos and other mementoes. But making a memory box for children, and doing other
practical things, is not a reason for not talking to them, whatever the disease, the
circumstances, or the children’s age. And if you don’t talk to them they may find out the
information some other way.

“It's been six years since my parents died of Aids. I was seventeen when they died, but
we were never told about what they were really suffering from. I am not sure if the reason
behind this was that my aunts were in denial or that they didn't want us kids to know, but
the fact of the matter is that I knew.” 22

But I might not die

If you are fortunate and you live much longer than you expected, then it won’t matter if
the practical things have been done. But if you do die without doing them it can cause
unnecessarily difficulties and indeed suffering for those left behind.

Who is going to look after me?

When a person is likely to live for only a few more weeks or months, it is often referred
to as the period when someone is terminally ill. “Terminal care” or “end of life” care are
expressions sometimes used to refer to the care that a person needs at this period.

In the UK much of the terminal care that people receive is provided by community health
care teams (formally known as primary health care teams) which include and are
coordinated by the person’s local doctor (GP). The community care team will include a
district nurse, and may also include help provided by one or more of the larger medical
charities, although the amount of help possible will depend not only on where the person
lives but also on the specific disease. If someone is living in the UK, and has Cancer, it
may be possible for a Marie Curie nurse to provide extra practical nursing help. The
Macmillan Cancer Support charity also provides some support through nurses, but this is
not practical “hands on” nursing care, but rather the Macmillan nurses providing
specialist help with pain and symptom control, and other more specialized tasks, This
other help is again organized through the person’s GP.

Other countries have other arrangements. It is best to ask your family doctor or whoever
is responsible for your medical care, what local services are available. Don’t presume
they will tell you if you don’t ask.

Where am I going to die?

The period when someone is terminally ill is a particularly fearful time for everyone
involved. Sometimes this fear may result in the person being moved to a hospital or
hospice, or they may be moved because they have a reversible problem such as an
infection, for which hospital treatment is desirable and should be provided, or it there
may be no other way that sufficient nursing and social care can be provided.

It is vitally important that the person, if at all possible, is fully involved in any discussion
about a move, particularly if they had earlier been against it. If the person appears to
agree to a move, it is crucial that it is what they really want and not something that they
are agreeing to for some other reason (perhaps because they don’t want to upset their
relatives for example).

Once a person is in hospital it can be difficult to arrange for them to be discharged, as

health professionals can be nervous about whether the person will have sufficient care. It
may be necessary for the patient to express their wishes quite clearly.

There can be considerable pressure on the relatives and difficulties for them as well.

“‘Don’t do it.’ said a doctor-friend when I told her I wanted to bring my terminally ill son
home. I’d no idea how exhausting and emotionally draining this caring business is, she
warned. Honestly, I’d be much better off leaving him in hospital till the end, and anyway
I should think of myself and the rest of the family. They need a mother too. So I thought
of myself, my son, and the rest of the family. And I brought him home.” 23

The last few days at home

There can be particular benefits to the last few days being at home, and some of these
benefits can also arise if the person is in a hospice.

“Once we were free of the hospital, the tension and pressure began to fall away, and the
last days were suddenly free of fear. Time was incredibly valuable. All the crushing
worries, torments and pain of the preceding months simply floated away. They no longer
touched us. Our daily routine relaxed. He didn’t want the dressing on his thin arm
changed today? Fine. Lets do it tomorrow. Or not at all. It didn’t matter any more.Instead,
we had lots of time to exchange memories, to be close together, undisturbed by the noise
and inevitable hectic environment of a hospital death.” 24

How will I know when death is approaching?

It is impossible to be certain how long a terminally ill person is going to live, because
even with a progressive illness, death can be unexpected and sudden if the illness causes
a major failure in some part of the body. This is why it can be so important to plan ahead,
and also to say those things which need to be said whilst you have the chance, because
you never know which conversation might turn out to be the last.

More often though with a progressive disease, death will be a gradual and slower process,
and there will often be signs that it will probably not be too long before death will occur.
These signs do of course vary greatly, not only from illness to illness but from person to
person, but may well include the person becoming gradually but noticeably weaker and
perhaps less interested in things which are happening around them. They may also
become quite sleepy during the day, and possibly a little confused about what day or time
it is.

The Moment of Death

A dying person may often be fearful and lonely. Most of us fear the unknown, and no one
else can tell you what it will be like. As a relative or carer you may also be fearful, fearful
for the grief that you know is coming, and fearful of the actual moment of death and the
period leading up to it. Many people will never before have been present when someone
dies. There is no “right” answer about what you should do or say, and there is not always
a need to talk.

Many people are particularly afraid of the physical aspects of death. Much can be done
by a doctor or nurse to ensure that neither the person dying nor other people present are
unduly distressed by any additional physical symptoms. If such symptoms are likely to
occur they can usually be controlled with medication.

If a person is in hospital, and even more so if no relatives or friends are present, a doctor
can provide very important help at this time, as this patient explained a few moments
before she died.25

“There are times when you want your doctor to have lots of letters after his name to show
how clever he is. There are other times when you want your doctor to be your friend as
well as being your doctor. This is the loneliest time I have ever known in my life – a time
when all I want is a friend, particularly if he is also my doctor. Please stay with me for
just a few minutes more. You don’t need to talk unless you want to. Just be there.”
A “good death”
“you took a long breath and stopped, after a minute you took another long, long breath,
like a sigh. So peaceful, no pain, no loss of dignity. We had promised you that. You
trusted us all and we didn't let you down. You took two further breaths with everyone
there and then your body was at peace. How peaceful and beautiful death can be when it
is a gentle release from a progressive disease? When death has been accepted, as you had
accepted it, without fear.” 26

The Emptiness that is left behind

“a sadness that is always a part of us but no longer gets in our way”

For the relatives left behind the period after the death can be very hard as this mother
explains.

“A phase of life came to an end and Simon’s illness, which had been the focus for 20
months of our lives suddenly no longer had any significance. We are left with a great
void. We had to plan the funeral, inform family, friends, and officials that Simon had
died and the intense concern of keeping Simon alive was wiped out.” 27

But in due course, even for these relatives, the grief finds a place, they find support, and
they continue with their activities and lives.

“From a sadness which is with us frequently to a sadness that is always a part of us but no
longer gets in our way we can begin to be happy and move on in our lives” 28

Where Next?
AVERT.org has more about:

• HIV transmission & testing

• What is palliative care?
• Introduction to HIV & AIDS treatment
• Global HIV & AIDS epidemic

• back to top

• What's this?

Written by Annabel Kanabus in memory of Jason Kanabus.

References
1. Carr K. (2006 16/10),'It's not like that actually', Vermillion
2. Lance Armstrong Foundation - Barbara Ramsey Story
3. Lance Armstrong Foundation - Barbara Ramsey Story
4. Dickinson D, et al (Editors) (2000 12/08),'Death, Dying & Bereavement', SAGE
Publications, Second Edition
5. www.cancerbackup.org.uk (2005 01/09),'Talking to your children about your
cancer'
6. Kessler D (2000 01/10),'The Needs of the Dying: A Guide For Bringing Hope,
Comfort, and Love to Life's Final Chapter', Harper Paperbacks
7. Kessler D (2000 01/10),'The Needs of the Dying: A Guide For Bringing Hope,
Comfort, and Love to Life's Final Chapter', Harper Paperbacks
8. www.avert.org - 'Stories Section'
9. Lance Armstrong Foundation - Barbara Ramsey Story
10. www.bbc.co.uk/health - Living with cancer - Your Stories
11. www.bbc.co.uk/health - Living with cancer - Your Stories
12. www.bbc.co.uk/health - Living with cancer - Your Stories
13. www.hospicenet.org
14. Grant S (2005 30/06),'Standing On His Own Two Feet: A Diary Of Dying',
Jessica Kingsley
15. Carr K (2006 16/10),'It's not like that actually', Vermillion
16. www.avert.org - 'Stories Section'
17. Carr K (2006 16/10),'It's not like that actually', Vermillion
18. Y-ME National Breast Cancer Organisation - End of Life Issues
19. www.bbc.co.uk/health - Living with cancer - Your Stories
20. BBC, 'Planning a good death' booklet
21. BBC, 'Planning a good death' booklet
22. www.avert.org - 'Stories Section'
23. Grant S (2005 30/06),'Standing On His Own Two Feet: A Diary Of Dying',
Jessica Kingsley
24. Grant S (2005 30/06),'Standing On His Own Two Feet: A Diary Of Dying',
Jessica Kingsley
25. Oxford Textbook of Palliative Medicine
26. www.cancerinyoungadults-throughparentseyes.org
27. Grinyer A (2002 06/12),'Cancer in Young Adults: Through Parents' Eyes', Open
University Press
28. Department of Health, 'Help is at hand' booklet

Last updated March 19, 2010

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