appendix c

Professionally-Based AIDS Home Care

Communication and planning  The test of good records  Effective team meetings  Sorting out a growing caseload  Short-term placements  Be clear about active or palliative plans  Recording team decisions  Allocating discussion time  Adjusting structures  Providing care for the carers  Recognising the roots of anger  Preventing burnout  Everyone can help  And finally
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 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)
  

You may be intending to set up a home care team following the Christian care principles outlined elsewhere, or you may be involved in a team already. Here are some brief thoughts on the structure and function of successful, rapidly-growing, professionally-based teams, based mainly on my experience of the ACET home care team in London, of working at St Joseph's Hospice and as part of the Community Support Team at University College Hospital. As with the notes on setting up community care, these perspectives will need careful and sensitive adaptation to your own situation.

My definition of professionally-based care is care with a component provided by health care professionals, such as nurses, doctors or social workers. Since the key here is to cover medical problems, the role of nurses or of a doctor is critically important. This kind of care is very expensive in comparison to just using volunteers or paid care assistants, but is in my view essential in a team of any size.

Our primary aim is to provide whatever people need in order to have a good quality of life at home and to live and die well. A strong team will be able to fill from its own resources most of the major needs people have. The exact role of the team may vary according to the person and what else is available, but we are there as a back up, an insurance policy, a safety net to help fill gaps as far as we can. A large team without any professional involvement is going to be unable to help if someone is deteriorating at home with medical problems, such as uncontrolled symptoms or infections.

In London our role has been to support and enhance what other health care workers are doing, not to take over. Therefore although there is a small element of doctor cover for the team we do not prescribe medication, just as we do not provide community nursing. Occasionally those guidelines are broken for a particular reason at a particular time---usually because of an unexpected crisis---but it is the exception.

Our aim is redundancy. In theory the need for specialist teams should grow less with time if the teams are doing a good job---even if the problem is growing. As we help other care workers gain experience in HIV we hope that problems like the relief of pain can be dealt with increasingly by them. We want to normalise HIV so that those with AIDS are integrated into all the normal channels of health care. There will always be a role for specialist advisors in the community in helping sort out the more difficult problems, available on a twenty-four-hour basis.

In some countries this approach may be impossible due to cultural factors or lack of other resources. The principle still applies that wherever possible I believe our long-term aim should be seeking to integrate HIV care into whatever other services exist. This will give the greatest benefit to those with AIDS by reducing marginalisation and offering the widest choice.

Communication and planning                    (return to index)

The two greatest keys to successful care are communication and planning. Therefore the most important event of the week is the team meeting when staff members discuss each person they are caring for. The central record must always be the patient's notes (or client if you and they prefer this term).

It is vitally important that in addition to a full account of past history, medication, treatment, social situation, insight into diagnosis, list of main problems and list of others involved, there should be a log of every contact. This is best maintained in the form of a diary. The log is to enhance care but will also be a great help in recording workload for funders.

Each time someone is telephoned or visited, or there is some other communication, it should be logged in the notes by the person concerned. Notes should be written up at the time or immediately following a visit. It is much better to have the notes open with pen in hand ready to write when sitting down to make important telephone calls. When things get busy, people are tired, and emotions run high with many dying, it is easy for things to slip and for important facts or requests to be forgotten.

The test of good records                   (return to index)

The test of good notes is that somebody should be able to be on call over a weekend having just come back from holiday---with the minimum of handover time. If someone calls, the person covering should be instantly in the picture just by opening the notes. They should know exactly what is happening and be able to give exactly the right input.

Effective team meetings                   (return to index)

During the meeting each care worker brings the team up to date with any changes and plans for future action. New referrals are also presented and discussed. A well-run team meeting will create discussion so that problems and concerns can be shared and solutions found. It is essential for the health of the team that all members feel they have a special contribution to make. It is therefore an opportunity to affirm and encourage people in their different roles.

It is easy for a two-tier team membership to develop, where the professionally trained members are responsible for care and the care assistants are being used as nothing more than full-time volunteers. This is always likely to damage team spirit and care, because nurses will tend to be overburdened while others are likely to feel undervalued.

In my experience, those who have professional training can oscillate at times from thinking their training is hardly being used and their qualifications are being wasted, to thinking that you have to have letters after your name to do anything other than menial tasks. The truth lies somewhere between the two, and an effective team meeting can enable safe delegation with effective oversight.

Sorting out a growing caseload                   (return to index)

People cared for can be grouped in three ways: those who are quite ill and need regular nursing advice and support in addition to practical help, those whose condition is stable and whose needs are mainly practical, and those who are reasonably well at the moment and who do not need help this week or next.

The sickest patients need nurse supervision of care, preferably with each nurse having his or her own group of people to look after. Those needing only practical help can be delegated to a care assistant to look after. The care assistant ideally will work very closely with the nurse who did the first assessment, reporting back anything new which might indicate a further professional visit is necessary.

A simple checklist can be drawn up for a care assistant to use when visiting. It might cover some standard enquiries about new or existing symptoms, changes in medication and changes in mobility. Change is the key. Is the pain the same one you have always had, or is it new? The cough which started last week and which was assessed by the doctor at the hospital, do you think it has got better or worse?

Short-term placements                   (return to index)

People joining the team on short-term training attachments are also an invaluable resource. Training requires investment on our part, so we want to make the most of their contribution; not just using them for driving or cleaning. Medical students on electives may be close to qualifying and may be very helpful in some reassessments, or in liaising with other health care workers or agencies.

Nurses and doctors on short-term placements can also play an important role, recognising that their lack of specialist knowledge may limit their symptom-control advice, as well as their ability to network with other agencies to build a package of care. In that context we also need to make sure we are using the professional expertise of some of our volunteers. Sometimes our own professional pride can prevent us from fully using the resources God has given us in our staff, our volunteers, or from other sources.

Why fill gaps that others can fill?

One rule when making assessments is that we ourselves never provide what can be found elsewhere. Often we find that a massive list of needs compiled during the first visit can be almost entirely met from other sources. Our main role may be as co-ordinator or organiser of care, backed by a twenty-four-hour call out facility.

However, a word of warning is needed. Never assume that what is promised by others is actually being delivered. Recently the London Home Care team carried out a survey of symptoms in patients whose clinical monitoring was supposed to be fully covered by others. We all had something of a shock to find how many we were caring for had uncontrolled symptoms such as pain, diarrhoea, nausea, vomiting or itching. In some cases all treatment options had already been offered and refused, or had been tried with limited success. However, in a number of other situations we found there were urgent steps which needed to be taken.

Be clear about active or palliative plans                   (return to index)

One of the problems of coping with advanced HIV at home is that many symptoms can only be alleviated by diagnosing and treating an underlying infection---a process which may require hospital admission. However, if we are not careful we can move to a situation where whenever a new problem emerges the person goes back to hospital, eventually to die there.

We have seen earlier how pressures are growing for legalised euthanasia, driven in part by the AIDS lobby. Those pressures are magnified if the response to every new problem is active treatment. Gradually the person with AIDS accumulates more and more chronic conditions, each of which produces a number of unpleasant symptoms which may or may not be controllable. There must come a time for each person when further active treatment is questioned, with the alternative being partial treatment at home (say with antibiotic tablets but not with intravenous therapy), or symptomatic treatment only.

Ideally then everyone in the team meeting will have some notes in front of them of people they feel responsible for and will be presenting to the others. Each week some notes will be passed across to others as the person's needs are reclassified. Only those requiring active input soon need to be discussed each time (in London this might be half of those on the books). The remainder who are `low dependency' do need monitoring, perhaps with a monthly phone call.

If you just wait for people to contact you again you may find people have died with all kinds of problems that you knew nothing about. This is particularly true for people referred too early when they do not really need care. Although we say they can ring us any time they feel the situation has changed, in practice many may feel a slight hesitation. They may have had high expectations before our first visit, and a feeling of disappointment, or even of being let down, when we told them they were not really suitable yet for our involvement.

Recording team decisions                   (return to index)

When discussing each person's care in the meeting it is important to record decisions made. Three important things need to be noted on a regular basis: main problems, agreed action to be taken, and likely problems in the future. The latter is very important. How is the person going to die? Where is it likely to happen? Is that what the person wants? What is likely to be the next problem we face along the way? How are we planning to meet this? AIDS is an uncertain illness and it is easy to be lulled into a false sense of security by someone who looks reasonably well today. A recent survey showed that half of all those referred to London Home Care were dead in fewer than twelve weeks.

It is important to record team decisions in the notes, possibly in a different colour so they can be clearly found among the log of other entries.

All team members including care assistants should be writing in the notes, including short-term secondments. This ensures the record is complete, and also sends out a further message that their contribution is an essential part of the care.

Allocating discussion time                   (return to index)

A well-run team meeting will allocate time wisely with a gentle but firm leader, ensuring that those discussed at the end of the meeting are not skipped over, and that longer is spent on those with complex problems. Time also needs to be given to support for team members when care has been traumatic, to discussion of new referrals and to a review of recent deaths. It is important to look back. We cannot go on caring for large numbers of the dying, forgetting about them the moment the funeral is over.

Care `post-mortems' can be a deeply meaningful part of a team meeting. They can be a time when hopefully we can pat each other on the back and tell ourselves we did well. They can also be a time when we comfort each other because we feel, for reasons possibly out of our control, that things turned out badly.

This might be true for someone who died unexpectedly quickly, or where support in the home collapsed towards the end and the person ended up in hospital when they wanted to be at home. Sometimes there are lessons to be learned. Did we communicate well enough with others? Could we have anticipated the need for extra symptom control over the weekend? Sometimes symptoms can be severe and very difficult to control. The problems can be far more complex to manage than in the cancer patient.

Adjusting structures                   (return to index)

With a growing caseload, the structure of the team may need adjustment. This should be done in a way which maintains a sense of family, continuity of care and a feeling of stability. If the caseload is too big to handle in one group, a large number of people may have to sit through a never-ending list of reports. Tiredness results, and discussion can become almost impossible due to time constraints. We have faced this recently in London.

A growing team may need dividing into two sub-groups which are reasonably self-contained, but providing on-call cover for each other, and care for each other. Inter-team communication can be maintained by continuing to base all members in the same offices, and by having the two care meetings overlapping by an hour so that all are aware of those who are most ill or who are likely to call.

Providing care for the carers                   (return to index)

In Chapter 10 we looked at how important it is to care for the carers: others in the home on whom the person who is ill depends. However, adequate team support is also essential. This needs to happen on three levels. First, by friendship between team members, caring for each other and praying together. Secondly, by those responsible for the oversight of the team, preferably people not involved in the day-to-day running, who meet with the whole team and with individuals as needed. Thirdly, by the churches that team members belong to. Sometimes it is hard to unravel personal needs from home, and needs arising from the strains of the work.

One thing is clear: terminal care of any kind is draining and traumatic. There is a cumulative load with time. Emotional survival in the longer term may require a degree of emotional detachment and breaks from close involvement with certain individuals.

Recognising the roots of anger                   (return to index)

Anger can be a real problem in any team caring for the dying. Anger, as we have seen, is often close to sadness and tears. It is often a defence mechanism. Therefore we can expect to find a lot of angry feelings emerging in those visiting people at home. The trouble is that anger can destroy a team if the reasons for it are poorly understood.

Sometimes anger among a group can be directed at some unwitting outsider, whether senior management, a person from another agency or a representative of local government. While this may act as a relatively safe outlet as far as the group is concerned (because it is better than attacking other group members), it can still be very damaging. It can also create tension between people who are trying to support the team from outside and team members themselves. Distancing can then create further resentment and difficulty.

Preventing burnout                   (return to index)

The answers to preventing unbearable stress and burnout may include giving people extra time off---especially after an `important' death or a busy weekend on call---redeploying them for a while into other areas of work, taking steps to reduce caseloads by recruiting more staff or by reducing service levels, providing a listening ear, encouraging local church support by contacting leaders, and finally sometimes by helping someone see the need to have a complete break by getting a different kind of job for a while.

As with anger from those we care for, the issues raised must always be taken very seriously, and be responded to quickly. Nothing is more infuriating than to be told the reason you are so upset is because three of your favourite patients died last week. Those who are doing the caring are at the sharp end and deserve every ounce of support and encouragement we can give them. Just as with carers in the home, it may be more helpful to roll up your own sleeves and get involved than just sit and listen (see p 401).

Everyone can help                   (return to index)

There have been times of particularly great pressure when almost every member of the ACET staff in London has given time to help in the home, including our accountant, educators, secretaries and members of the executive team. The boost to morale is out of all proportion to the level of the contribution. We are in this together. Caring for people in desperate need at home is what we are all about. It sharpens all we are doing in prevention. As a byproduct, extra staff involvement ensures that we are all in touch with the heart of our work.

And finally                   (return to index)

Just to show you how complex home care can be, here are just a few of the issues raised during a single team meeting recently:

Clients' forgetfulness (leaving taps or gas on or cigarettes burning---one person we cared for in Scotland died in a terrible fire); incontinence; verbal abuse of volunteers and staff by emotionally disturbed clients; difficult symptoms (pain, itching, diarrhoea, loss of sight); volunteer helper upset by very explicit pornography on walls (change person going in?); chaotic client not keeping appointments---visits cancelled at last minute, sudden discharge from hospital, rapid deterioration at home; massive skin infections (herpes); multiple drug-resistant TB; home intravenous infusions, eg glanciclovir; total parenteral nutrition (feeding via a vein); children about to be orphaned; fostering; client terrified of death; homelink telephones (pendant around neck to press in case of fall or emergency); six people died at home or in hospital this week; eight more referrals to see .

Communication and planning  The test of good records  Effective team meetings  Sorting out a growing caseload  Short-term placements  Be clear about active or palliative plans  Recording team decisions  Allocating discussion time  Adjusting structures  Providing care for the carers  Recognising the roots of anger  Preventing burnout  Everyone can help  And finally

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