Am I going to die?

back to top Introduction

Advances in antiretroviral treatment and the lessons learnt from research and experiences around the world means that today in most countries people can live with HIV and learn how to best maintain their wellbeing. During the early years, living with HIV was more challenging because not much knowledge, expertise and resources were available. This page had been written for those travelling the emotional journey of living with a life threatening progressive condition. It is hoped that it will be useful for those living with HIV and , cancer or some other potentially life threatening progressive disease, as well as those affected as friends, relatives or carers.

back to top A progressive disease

A progressive disease is a disease that generally gets worse or more severe over time. Some progressive diseases get worse quickly whilst others progress more slowly. Some otherwise progressive diseases such as cancer and HIV infection can quite often be halted by treatment.

back to top A progressive disease - being told the news

For most people the first time they are told they have a progressive disease is the news of diagnosis. But news, whether good or bad, can also come at other times, whether it is when HIV infection develops into AIDS, when cancer recurs, or the good news when someone is told that their treatment has worked.

On hearing they have a progressive disease many people assume that they are likely to die much sooner than they previously expected. But it is possible that their 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, they 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

back to top 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.

back to top 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

back to top 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.

back to top 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.

back to top 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

back to top 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

back to top 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

back to top 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

back to top 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

back to top 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 a progressive 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.

back to top 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.

back to top 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

back to top 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

back to top 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.

back to top 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.

back to top 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

back to top 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

back to top 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.

back to top 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.”

back to top 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

back to top 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

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References back to top

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