Dave was 38 years old and lived alone in a council flat. He was diagnosed HIV positive in 1990. When I visited him he was virtually bed-bound due to severe muscle wasting, weight loss and diarrhoea. He was extremely weak and hardly eating or drinking. Although we had not met before, he welcomed me into his home and trusted me. I cleaned his kitchen, cooked him some lunch and chatted. As I was leaving, Dave told me that he was panicking as his mother had died of cancer the year previously and he felt he now looked as she had then. He was conscious that he was nearing the end. Five days later, Dave died.
Dave is just one of the people I met during my elective with ACET who made a profound impression on me and helped shape my attitudes and approach to AIDS. Founded in 1986 as a Christian response to the AIDS epidemic, ACET works in communities around the world to provide unconditional care for those with AIDS, enabling individuals and communities to live with hope and to die with dignity. The London home care teams consist of doctors, nurses, home care assistants and trained volunteers. All are committed Christians. Most of my three weeks was spent visiting clients in their homes although I also visited hospices, hospitals and schools.
Learning to serve
Meeting patients in their homes gave me the opportunity to discover what living with AIDS really is like. They knew me only as 'Anna', not as a medical student nor with any other label. This resulted in a far more natural relationship than if I had been in a white coat at the foot of a hospital bed.
Providing practical help may not be part of the typical job description of a medical student, but the experience of serving people in this way was personally invaluable. Often what I perceived a patient's needs to be and what they were asking me to do were two different things. For example, Dave told me not to bother with the bathroom although I could see the floor really did need washing. Then I realised that this was an embarrassment to him. He would much rather live with the mess and retain what he could of his independence and dignity. He had already lost so much through AIDS.
People with AIDS are struggling to maintain control over their lives. They may lose control of their future, their daily routine, their body image, their continence, their relationships and increasingly their minds. It is important that they feel they can be in control of their care. People with AIDS are often highly informed and motivated concerning their illness. Many of them will have experienced the death of a close friend or relative due to AIDS. These factors mean that often the patients are more knowledgeable than the doctors. This can be hard for us to accept, having trained for many years. The doctor's role becomes less authoritarian and directive and instead is that of a facilitator and enabler. Traditional paternalistic approaches must be put aside in order for us to listen and respond to the needs of the patient.
It is easy to forget when you meet a sick person in hospital that they have previously been totally well and lived a normal life. This is strikingly obvious when you are in someone's home. I remember visiting Joe. He was 53 years old and had AIDS. I was looking at a portrait on his wall and suddenly realised that the healthy man depicted was in fact Joe, now lying on his couch, thin, weak and surrounded by medicines. Talking to him, I learnt of his hobbies, holidays, interests and attitudes. He was amazingly open about what it was like to live with AIDS. It showed just how depersonalising hospitals are and how the fashionable term 'holistic approach' means nothing until you see someone in the context of their normal life.
Caring for people dying of AIDS involves addressing not only the physical but also the emotional and spiritual needs of the individual. It was a joy to be part of a team such as ACET where this understanding shapes every activity. Half an hour each morning was spent praying for the patients. The genuine love that everyone showed for them, and the belief that God could intervene in their lives, was evident. How wonderful it would be if before a ward round a consultant could gather his firm for thirty minutes of prayer! I am convinced that this spiritual dimension makes a difference to the quality of care that ACET clients receive.
Who is my neighbour?
In the well known parable of the Good Samaritan, the expert in the law asked Jesus this question. He was probably hoping for an easy answer - that his neighbour was the person he already loved. Maybe Jesus' reply shocked him!
Most of the people I met were from social groups of which I had had no previous experience - homosexuals, African immigrants and intravenous drug users. These were people with whom I would normally have had little contact. Jesus described such people as my neighbours. He illustrated how our care must be motivated only by love and not influenced by race, background or circumstance.
Jesus spoke very strongly against those who were quick to judge others. Yet sadly many Christians have responded judgmentally to AIDS. I had to deal with my own ungodly attitudes whilst at ACET. I realised how easily I forget the amazing truth of my own salvation; that I am a sinner and would not be here but for the grace of God. Recognising this motivates us to give the same depth of unconditional love to those for whom we care.
To address the real problems of AIDS we have to challenge our own personal prejudices so we can accept, love and care for people as people. Otherwise our care is almost worthless. Many of the patients I saw had experienced for themselves the result of prejudice and fear. Jesus understands the pain of rejection and isolation. People with AIDS need to know they can trust carers, not to further marginalise and stigmatise them.
Without a cure
With all the advances in modern technology there is still no cure for AIDS. We live in a death-denying culture and doctors probably find dealing with death harder than most. I think that traditionally doctors, and medical students, are expected to cope whatever the circumstances. We are conditioned to deny our hurts and insufficiencies. Working at ACET, there were often patients dying. The support of other workers was invaluable. There are many emotions involved when someone dies from AIDS and Jesus shares in this grief.[7,8] Yet for the Christian there is real hope in death.
For many people with AIDS one of their main fears is that of dying alone and in pain. The assurance of someone 'just being there' can allay these fears. It was a tremendous privilege, and a responsibility, to be accepted into people's homes when they were at their most vulnerable. Practical care alongside appropriate medical management can enable an individual to die with dignity, without pain or isolation and in the place of his choice.
I am convinced that the challenges of AIDS are ones we all need to address. Studies have shown that medical students harbour many negative attitudes towards AIDS as well as many warranted and unwarranted fears, to the extent that in one study, 50% of students were not interested in treating any type of patient with AIDS. Another study showed that most medical students feel inadequately prepared to cope with the medical and psychological problems of HIV infection.
I believe we have a responsibility, both as medical students and as Christians to ensure we are informed and equipped to deal with AIDS. We also need to recognise our own attitudes and prejudices as these affect our ability to provide competent and compassionate care. My experience at ACET gave me that opportunity.
I would encourage you to spend time with people whose lives have been profoundly affected by the virus. This is a powerful form of learning.[13,11] Personalising the illness increases empathy for patients and offsets the tendency to stigmatise those with AIDS. Our attitude and determination quickly deteriorate if we lose sight of the people, and ultimately the God, whom we serve. My memories of the people I met will stay with me and I trust will enable me to play my part in providing quality unconditional care for the increasing number of people living with AIDS.
(All names used have been changed)
Are you interested in doing your medical elective with ACET, and encouraging others to do so? Write to: ACET, PO Box 1323, London W5 5TF or telephone: 020 8840 7879