Life and Death Issues in AIDS Care

Just one person  Dying without family, friends or dignity  In the prime of their lives  Correct but horribly wrong  Just one more statistic?  Death denial  The church's reaction to death  Horror  Frantic search for cure  Miraculous healing  God's kingdom now yet still to come  Confusion  Questioning  Isolation  `He had just left his body behind'

CHAPTERS: Introduction  1 The Extent of the Nightmare  2 What's so Special about a Virus?  3 When Cells Start to Die  4 How People Become Infected  5 Questions People Ask  6 Condoms Are Unsafe  7 Moral Dilemas 8 Wrath or Reaping?  9 Some Life and Death Issues  10 When Church Members Need Help  11 Others Need Help Too  12 Saving Lives  13 Needle and Condom Distribution?  14 Special Issues in Poorer Nations  15 A Ten Point Plan for the Government  16 A Global Christian Challenge  Appendix B  Appendix C  Appendix D 

Note:  This chapter of The Truth about AIDS by Dr Patrick Dixon is the original text as published by Kingsway in 1994 updated in 2002 and may be reproduced with acknowledgment.  Search this book.

• Latest AIDS statistics, AIDS information - Africa AIDS Crisis - History of AIDS - AIDS epidemic, India, Asia, Eastern Europe, Central Europe, Russia, America, China
• AIDS research - causes of AIDS - AIDS treatment - retroviruses - protease inhibitors - cure? Antiretroviral therapy for HIV
• HIV transmission, AIDS risk factors and HIV window period
• What is AIDS? - HIV symptoms - AIDS symtoms - symptoms early HIV infection - early signs infection
• How reliable are condoms?  HIV dating - reducing HIV transmission
• Life and death issues - HIV medicine
• AIDS FAQ - vaccine, treatment, AIDS testing, Africa, China, Children, workplace discrimination, AIDS myths, origin of AIDS
• Moral dilemmas - euthanasia and AIDS treatments
• AIDS and the church - when church members need help
• Community care - treatment, adults, children, orphans
• AIDS education - AIDS awareness in youth and schools
• HIV Prevention - needle exchange program and condom distribution
• AIDS in Africa and HIV in Africa, HIV infected surgeons
• Ten point AIDS management plan for governments
• A global Christian challenge - church response to AIDS
• Guidelines for best practice in running HIV / AIDS programmes in developing countries (Africa / India / Asia)

Just one person            (return to index)

I will never forget the first person I met with AIDS: a young student desperately ill in a side-room of a busy hospital ward. He was anxious, sweaty and panting for breath. His hands gripped the sides of the bed with fear. His thin face was covered with an oxygen mask, his chest was covered in wires and tubing. He was alone and about to die.

From that moment on I found I was involved. Here was a human being, made in God's image and in great need. How could I respond other than to care and help, laying aside any personal feelings I might have had about lifestyles, and the means by which he had become infected?

Dying without family, friends or dignity            (return to index)

I asked about his family and his medication. I was told his parents lived some distance away, knew nothing and thought he was fit and well at university. He did not want them to be contacted because he feared a terrible reaction when they found out what was wrong. He had hidden his illness from them completely.

I was told the simple medication I suggested could not be given because there was a chance he might pull through. In my view the team would be phoning his mum or dad just a few hours from then, to inform them of the death and of the diagnosis. By the time they arrived his body would be in the mortuary, sealed in an opaque body bag following an agonising death. What kind of care was that?

I came off the ward feeling angry, upset, frustrated at the lack of response to suggested medication changes, and realising that life would never be quite the same again. I later found out that almost three-quarters of those with AIDS in the UK lived within ten miles of my home and place of work. I quickly discovered that many others were dying badly, in pain, alone, afraid, separated from those they loved, and often trapped in a hospital ward because no one could care for them at home. At the time, many services available for other illnesses would not get involved. There was a massive gap.

In the prime of their lives            (return to index)

The most shocking thing of all was that unlike a cancer ward where people tended to be retirement age or older, here was an entire ward of young people in the prime of their lives, every one of whom was going to die from a totally preventable rapidly spreading infection. As a care-of-the-dying specialist I could not turn away, whatever the reasons for the illness, or the lifestyles of those who were ill.

I had had mixed feelings about even visiting the ward. Some of my colleagues had refused to get involved and I had felt less than keen. After all, so they told me, AIDS was basically a sex disease of gay men. Was this really an illness I wanted to become heavily involved in?

Correct but horribly wrong            (return to index)

My Christian background told me that most of those infected were ill because they had rejected God's ways. It was easy to feel detached or even critical. It was also easy to react when confronted by a whole ward of young gay men, many of whom were openly expressing physical affection and intimacy.

As we have seen, so often as Christians we do nothing or find ourselves rushing to open our Bibles, to declare to ourselves and to others that something is wrong. Yet in our sudden reaction we can lose sight of God's mercy, love and forgiveness.

Just one more statistic?            (return to index)

I went back to the ward a few days later to find the young man had died the day before. They had taken my advice. They found as I predicted that medication to relax and help remove fear and feelings of breathlessness had improved his condition. The level of oxygen in his blood went up, not down. Far from killing him, the medication had allowed the inevitable to take place with comfort, dignity and peace. He saw his family before he died.

As a result of this experience I began with others to set up hospice-style home care teams for people with AIDS. Many with AIDS reacted, telling me that the emphasis should be on `living with AIDS', not on dying. My reply was that such an approach was fine so long as you were well, but many were dying badly. Doctors also reacted, telling me there was no `terminal phase', that AIDS was totally unlike cancer, and that the emphasis should be on active treatment. A part of these two reactions was undoubtedly fear of death or death denial, since those dying so obviously needed help, and there is often a stage of chronic illness and gradual deterioration when palliative care is needed.

Death denial            (return to index)

Since 1945, those in industrial nations have been living in an escapist, death-denying society. What is so peculiar about dying? It is just as much a part of the cycle of life as birth. The reason is that we are afraid of death. Death is the terrible unknown which robs and destroys. This fear spills over into panic, fear of illness, operations, flying, or many other things. As we will see later in this chapter, this has a profound effect on doctors and what they do.

The church in the West is full of the same death-denying mentality. This can lead to a watered-down gospel promising good things now (peace, security, happiness, prosperity) because all the future rewards (heaven, eternal joy and peace with God) have lost their meaning. People who are always talking about heaven can be regarded as needing a psychiatrist---and yet that is the hope that drove the earliest Christians towards their goal. The prize St Paul was absolutely determined to win was God's call to the life above in Christ Jesus. He was perfectly content to continue this life as long as God wanted because to `live is Christ' but `to die is gain'. So what has gone wrong? If even Christians are afraid, what hope is there of dealing with the fears in the rest of our society?

Christians in wealthy nations have so much to learn from the churches in poorer nations.  Here death stalks even the youngest and the healthiest as a daily reality, where life on earth is uncertain.  And eternal life is more real.  The result is often an attitude to daily living which is far closer to the attitude of Jesus himself, who taught us not to worry about tomorrow for tomorrow has troubles enough of its own.  Jesus mocked the rich man who laid up wealth in his barns and then suddenly died.  Jesus taught us to lay up treasure in heaven, to focus our attention not on what is seen but on what is unseen, not on things, but on our relationship with our heavenly Father.

The church's reaction to death            (return to index)

Look at the reactions of many churches (particularly in developed countries) to someone in their congregation who has just been told he will be dead by Christmas. The younger the congregation, the more extreme the reaction, which is why many of the rapidly growing churches are in difficulties over this whole area.

Horror            (return to index)

The person or his family or the church recoils with horror at the prospect of death. Having carefully put aside all thoughts about getting old, the body wearing out, and having ignored the absolute inevitability of death, the news comes as an inexplicable, unexpected disaster. The deaths of friends, colleagues and relatives at similar ages and stages have always been written off with the philosophy of `it will never happen to me'. The shock now produces devastation.

Frantic search for cure            (return to index)

Every avenue is pursued and every door pushed. Second opinions are asked for. Ever more mutilating procedures are discussed. The treating doctors often drive this madness along themselves, as a part of their own feelings of inadequacy and failure. `Cure at all costs.'

Desperate prayers

Fear of death is perhaps what lies behind some of the tremendous drive towards supernatural healing in the church. Books on healing are bestsellers. Healing conferences are packed. Healing meetings have been standing-room only unless you arrive very early.

Within a congregation there is a drive to desperate prayers---and maybe fasting. Not the balanced prayers of faith, but the desperate prayers of fear. Gripping, overwhelming, paralysing fear of a terrible disaster. I have seen people reacting out of fear and their own emotional problems. The person they are so strenuously praying for may be totally at peace about `going home' but others are utterly opposed to allowing events to take their natural course.

Please do not misunderstand this. I believe God heals supernaturally. Major healings of conditions doctors are unable to cure may happen every day and I say this as a doctor. I regularly pray for people to be healed and sometimes things happen. This recent growing experience of God's healing power has gone hand in hand with a renewed emphasis on the Holy Spirit who had become a mere nebulous, ethereal `thing' in the life and teaching of the church. The Holy Spirit is described by Jesus as the agent of his power. I am sure we are going to see far more evidence of that power over the next few years in countries like the UK, where the rationalistic mindset seems to mean supernatural intervention is more unusual, compared to many developing countries. God has given gifts and resources to the church and expects them to be used.

Miraculous healing            (return to index)

People often ask me if I know of any cases of miraculous healing of those with AIDS. The answer is that a number of reports are circulating, many from developing countries, but none yet that I know of relating to people in the UK, or of cases I have been able to verify.

If we believe God made the universe in an outpouring of almighty cosmic power, then it follows that the same God must have power and authority over every aspect of what he has made. He can boil a kettle of water at his command, turn water into wine, turn your home into rubble, move a huge tree twenty feet, quieten a storm, create a second moon to go round the earth, or remove a virus from someone's body.

God's kingdom now yet still to come            (return to index)

Scripture teaches us that God in his infinite wisdom and mercy has chosen to constrain much of his own power at this stage in the earth's history until the second coming of Jesus. In the meantime we have been given a foretaste of the coming kingdom.

There is a sense in which the kingdom of God is already here. We are encouraged to pray. When we pray according to God's will, we are told that God hears us and desires to act in response.

The truth is that in all things God is sovereign. Who is healed and why remains a mystery. Far fewer people are healed at the moment than think they have been healed. Unless we get our fears of death sorted out we will never have a true perspective on healing.

Confusion            (return to index)

Let's be honest. Usually the person is not healed. Even those who are especially gifted have success rates which are very low with serious illnesses like cancer or AIDS. This often leads to confusion---especially if people have been convinced that healing will take place or has occurred.

There is a lot of unreality in the church over this which is the result of fears of death and teaching by some that God wants to heal all who are sick. Unless there is honesty, openness and integrity, healing ministry will be brought into disrepute. If you think you have been healed, then just as Jesus told the lepers to get their cure certified by the priests (medical experts at the time), get it checked out. Why are you so afraid of an X-ray? If God is God and he has healed you, the X-ray of your arthritis-ridden hips will be normal. If you have been healed of high blood pressure, it will be normal and remain so when (under medical supervision) the drugs are stopped.

Some conditions flare up and die down, so it is hard for a doctor to certify a cure until a long time has gone by without any further episodes. Examples are asthma, ear infections, sinusitis, epilepsy, arthritis and AIDS. Because of the so-called placebo effect many symptoms such as pain may disappear for minutes, hours or weeks simply as a result of suggestion. Yet the disease may remain.

Questioning            (return to index)

The person or family may be angry: `Why hasn't God healed me if he healed someone else in our church? Why me?' This can try the faith of the ill person, their family and their friends.

Isolation            (return to index)

All too often separation occurs between those who have faith that healing has already occurred or is about to be completed, and those who are being faced with the daily reality of subtle changes in health, growing weakness, steady loss of weight, depressing blood tests, increasing pain, or shortness of breath. One group can be praying and fasting while the other is also praying but is tied up with the important process of preparing for death. This is a tragedy, especially if the latter group is tiny or non-existent apart from the ill person. If both groups are substantial, the result can be a split congregation.

Dying people tend to be marginalised anyway. We kid ourselves that we are caring but we are in fact rejecting. This has always been so of cancer---and has been part of the reason for hospices---and is especially so of AIDS. Apart from all the terrible fears and fantasies about touching a person who is dying with cancer (many deep down fear they can catch cancer even though they know this is irrational), there are all the intense fears of catching a plague related to AIDS.

When you don't know what to say, the result may be either ludicrous conversation or oppressive awkward silence. Because both are uncomfortable, many people shy away from visiting someone who is near death or has been bereaved. If they do visit, the conversation is stilted and often meaningless to the ill person who finds entertaining visitors exhausting. Visiting times can become nightmares: the most vulnerable part of the day when literally anyone can burst onto the ward into your bedside chair and be unmovable for an hour---unless a large number of others arrive. For further discussion of grief and loss, see Chapter 10.

So what is the answer to it all? The answer I believe lies in understanding the mystery of life and of death. Because nearly all my medical work has been to do with those who are dying, dead or bereaved, I have often been confronted by this issue.

`He had just left his body behind'            (return to index)

The first dead person I ever saw as a medical student was a huge, bloated, blue-faced man who had been pounded and punctured during a cardiac arrest. Doctors had jumped on his chest and jabbed him with needles. He came around, groaned, vomited and died. They shocked him again, pounded him some more, sucked out the vomit and eventually gave up. I waited and watched. Everyone drifted away. The curtains were abruptly closed off. Who was he? Who were his family? What about his wife?

I remember holding his hand and praying for him silently as he lay there, his brain gradually dying. A junior doctor came in armed with huge needles and began practising entering a vein in the neck. I asked him to stop, but he refused. He carried on until he got bored and wandered out. That doctor was in charge of the patient, but couldn't be bothered to find out if his wife was waiting outside. His whole attitude was cynical, as though the man was merely an object, a piece of meat.

I was angry and upset. How could people who had been trained to care react like this? I vowed no one I was with would ever die in such indignity.

As a Christian I believe I understood something the doctor had completely missed: a profound mystery had just taken place and I had been privileged to be present when it happened. Here was a man, a person, an individual with personality and energy, who in a moment had left this world bounded by space and time. While I watched he had just left his body behind.

Going into the dissecting room for the first time as a medical student is a strange experience. Here are people laid out on slabs; people of all shapes and sizes, distorted by long lying in formalin. Hard skin and fixed muscles. Empty shells: no one there, all long since departed. This is a mystery, the key to understanding life itself and our Creator.

That is why I count it such a privilege to look after people who are nearing the end of their lives. It is a spiritual event. Some would say that the nearest an atheist gets to a religious experience is his own death, and approaching death heightens spiritual awareness in every way.

It's why deathbed conversion is so common. As we saw in an earlier chapter, Jesus welcomed the dying thief into his kingdom. It seems strange that a patient who becomes a Christian in the last week of life should be loved by God in the same way as a faithful believer who has served God for decades. Jesus said that the first shall be last and the last shall be first. Those who care need to look out for clues to where the person is: a newly-opened Bible on the bedside locker, a crucifix which appears one day above the bed, a rosary in the patient's hand. These are all ways in which people tell us that things are changing inside. Sometimes conversion takes place without a word being said. A man I admitted to St Joseph's Hospice announced he was an atheist. Two weeks later he asked to see a priest. The man had undergone a radical turn-around as he approached the end.

Without faith, death is the ultimate enemy; death is the robber and the destroyer. With faith in Christ, death is merely a doorway to eternity. Faith confronts us with an issue: will I enjoy eternity when I get there? Will eternity with God be heaven---or will I find eternity an unpleasant hell?

Because I have found forgiveness, inner peace and reconciliation with God through turning to Jesus, I am looking forward to dying. While I am alive I am delighted to be allowed time here to spend with my family, building up the church, serving the community, worshipping and praising God---which is one of the most enjoyable things in my life---and telling people the good news, extending God's kingdom. However, I am just a visitor, passing through. There is nothing here which compares to what is to come. The next life is the true reality---because it is unchangeable. The earth we live on, the solar system, galaxies, space, the whole cosmos as we know it today has a very limited existence. You and I can outlive it all.

When we begin to find God's perspective on this time-space world, then death truly loses its sting. AIDS has lost its power. As doctors, the death of a patient is no longer failure but the natural transition from one existence to another. Death is not taboo any longer. We can talk about it and face up to our own mortality.

When we are with a patient who asks us if he is going to die, he can sense that we are at peace and not afraid. We can stay with him and not run away. We don't avoid spending time but are able to share experiences with him. We will not abandon him because hope of cure has abandoned us.

As a student I spent a four-week residential elective at St Christopher's Hospice. Someone said that you didn't have to have a faith to work there, but those who had no faith didn't tend to last very long.

If you are a Christian I believe you have the answer. For you the mystery is understood. You know the meaning of life and the meaning of death. You understand what is happening when someone is dying. You can give meaning and hope to a person who is reaching out to God. Because Christ himself lives within you, you bring Christ to each person you meet. Every time you speak, smile, or take someone's hand, that person comes into touch with some aspect of Christ himself.

In summary we have seen how AIDS is sweeping across the globe, leaving a terrible trail of human destruction, why the only solution in the foreseeable future is a radical change of values and human behaviour, and how failure to deal with fundamental issues like death and dying now compounds the problem of providing good care. AIDS makes us think through again our views on sexuality and life itself. It confronts us at the very root of our being and at the end of the day leaves us with choices about how we respond, not just to AIDS and those who are dying from it, but also to the ultimate issue: What is the meaning of life? What is the meaning of my life? Am I really just a collection of molecules, or is there another dimension?

There is another question: What is the church going to do about AIDS? What Christian response can be made and how do we make a start?

Just one person  Dying without family, friends or dignity  In the prime of their lives  Correct but horribly wrong  Just one more statistic?  Death denial  The church's reaction to death  Horror  Frantic search for cure  Miraculous healing  God's kingdom now yet still to come  Confusion  Questioning  Isolation  `He had just left his body behind'

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