Study Paper No. 5
Riding the Roller Coaster: Experiencing Transitions from HIV to AIDS

SUMMARIES and OPPORTUNITIES

  Transitions from HIV to AIDS and the New Treatments Climate  

The Transitions project was an exploratory research project which examined the transition from being HIV positive and well to being ill and having AIDS. We have seen that in many ways the division between HIV positivity and AIDS is an artificial one - people can be classified as HIV positive but still experience illness and people who have AIDS can be symptom free. But in the industrialised countries, it is the burgeoning impact of renewed treatment optimism which has most markedly shifted the nature of transition since this research was conducted. In some quarters, HIV is thought to be on the verge of being seen as a "Chronic Manageable Illness" viewed as little different than an easily treatable disease. While this scenario is a distant prospect for the overwhelming bulk of PLWH/A worldwide, in Australia there are strong claims that treatments are again PLWH/A's top priority, whether their actual decision is to treat or not15.

 There is no doubt that this new treatments climate is impacting the entire HIV/AIDS field. Preventive educators and care and support workers are both envisioning and enacting critical adaptive strategies to respond appropriately. Influencing sexual behaviour change becomes especially complex in a culture where health monitoring tools such as viral load testing may encourage greater risks of becoming infected due to a perception that HIV/AIDS is now a manageable condition. Treatments uptake and treatments education is increasingly being pushed concertedly by clinicians who, with a diminishing caseload, are able to devote more time to health maintenance. Put simply, those PLWH/A "living well" are living more healthily than ever and beginning to conceptualise a future beyond the short-term.

 Nonetheless, it is all too easy to paint a rosy picture to the detriment of those still struggling with the burdens imposed by AIDS. Indeed, drug company data in Australia suggests that only about 5,000 or 40% of PLWH/A are accessing anti-retroviral therapy. Furthermore, even though a NCHSR sample of 124 PLWH/A saw 68% using anti-retroviral treatments, a high proportion (33%) had been diagnosed with AIDS16. Many PLWA remain resistant to combination and/or monotherapy and others confront various obstacles in accessing appropriate treatments.

 Of course, any discussion of new treatments is liable to refocus attention away from the still severe impact of AIDS-defining illnesses. The Transitions study strongly indicates that the adjustment from an asymptomatic HIV positivity to dying with AIDS remains an exceptionally complex and undeniably traumatic process, despite the fact that these interviews were conducted prior to renewed treatment optimism from about late 1995 onwards. Indeed, several participants suggested that in a more optimistic climate, it is likely that the transition from HIV to being ill with AIDS becomes an even more problematic process, surrounded as it would be with quashed hopes of long-term survival and the sense of inevitable failure that accompanies any patient's supposed "incompatibility" or "lack of compliance" with medical treatment. It should also be recognised that the fervour surrounding new treatment's effectiveness is more a result of their capacity to slow the progression to AIDS than their ability to comprehensively attack the most common causes of death due to AIDS. Certainly fewer people are dying from PCP, wasting and KS but more people are dying from lymphoma (cancer) and MAC, presenting further challenges to the much heralded treatments revival. It is also difficult to overstate how much all this treatments fanfare is overwhelmingly geocentric in terms of its applicability to such a small fraction of the worldwide population of PLWH/A.

 

Illness and Dying

What is not in dispute throughout the world is that the advent of an AIDS defining illness involves a symbolic as well as physical transition for the individual concerned and to date, there are no successful therapies for coping with this form of transition. While the transition may be sudden and unexpected or gradual and accompanied by awareness that changes are slowly occurring, we have seen through the experiences of the great majority of participants in the Transitions research project that a PWA identity is constructed significantly different to living well with HIV. A further distinction drew attention to the range of identities amongst people with AIDS, from those who had successfully survived an initial AIDS-related illness to those close to dying.

In unpacking transitions from HIV to AIDS, the crucial distinction then involved separating the areas of illness and dying. One is not necessarily a precursor of the other. To put it another way, when dying is spoken of, more often than not illness is present; however, illness may not involve a realisation of dying. There is also a political or ideological aspect to the relationship between illness and dying. It is undeniably an extremely sensitive area. However, if this sensitivity is carried too far, the danger is that the dying experience of people with AIDS will not receive adequate attention.

We used the term dying experience to include not only the actual death but also in the self-defined sense - that is, a personal realisation that life has changed and that the time left to live is shortened. This awareness moves beyond an abstract notion that life is finite, it is urgent and influences all aspects of a person's existence. The overall purposes of the Transitions research were to study the experience of illness. However, in doing this, we also have to account for the experiences of people who feel they are dying. In this sense, a broad question for the study was:

  • How useful is the idea of dying in understanding the experience of AIDS? Or
  • How do people with AIDS understand dying, what does it mean for them?  

This begs another question, namely why attempt to describe the dying experience and what use is it? Describing the dying experience in a social and psychological sense is important in several respects. Firstly, it is an acknowledgment of a profound experience. Secondly, in describing this experience and the strategies used by dying people, services can be sensitised to this issue. Furthermore, other people with AIDS who may feel a profound isolation because of illness and the sense that they are dying, can have access to a broad social framework within which they can place and explore their own experience. 

The broad direction for this study was developed during the consultations and owes much to the concern that illness and the dying experience of people with AIDS were areas, which for many reasons, are where knowledge and description are lacking. And yet one must confront a larger problem in that to speak of illness and dying is to align with the view that AIDS is necessarily a fatal disease, and in so doing this is seen to undermine attempts to promote the idea of living with AIDS. In many HIV/AIDS communities, living with HIV and dying with AIDS have been presented as polar opposites. Part of the aim of this study is to examine the relationship between these ways of thinking. Broadly speaking, the reasons for the lack of focus were identified as: 

  • a general societal and cultural resistance to speaking of death and dying,
  • the physical limitation illness imposes on the involvement of people with AIDS in developing a voice in this area,
  • HIV/AIDS organisational culture which is concerned to offer hope and focuses away from illness and dying , and
  • the organisation of medical care around people with AIDS (treatments).  

The generally assumed equation of AIDS with a painful and prolonged death has meant that a diagnosis of HIV carries with it a powerful death laden stigma. Although there have been many deaths from AIDS, there are also people surviving and leading productive lives - the relationship between AIDS and dying is not as inevitable as it may at first have seemed. Promoting the view that AIDS is endurable and that a successful and fruitful life can be lead by people with AIDS is not, therefore, necessarily to deny the possibility of death. However, if this promotion does not also acknowledge that people are dying, then the danger is that the experiences of dying people will go unrecognised. The physical limitations imposed by illness and the isolation of those who feel they are dying means that it is often difficult for people to make others aware that changes are happening to them or to influence the organisation of the services that they require.  

Finally, the Transitions study has also shown that other individuals and groups can dramatically affect one's ability to cope with AIDS. For example, the organisation of medical care around people with AIDS can work to promote a sense of living rather than dying, sometimes characterised as medical unwillingness to cease intervention. This was once described to a member of the research team by a senior nurse at Fairfield Hospital in Victoria, in terms of an analogy comparing the care and treatment of people with terminal cancer and people with AIDS. She likened the care of cancer to a conventional war - for the terminal cancer patients, there came a point when medical staff acknowledged that their armoury (treatments) were no longer effective, and they withdrew to offer palliative assistance. In the case of AIDS, the recognition of defeat came much later (if it came at all) and thus constant treatment interventions characterised the care of people with AIDS.  

 

Windows of Opportunity

The Transitions study was, amongst other things, a speculative action research project which entered, to the best of our knowledge, unchartered territory. Hopefully, the information produced by the project will be of use to a variety of organisations: policy-making bodies, health care providers, community-based and non-government organisations, PLWH/A groups and other researchers. For specific care organisations, the data might be useful in the planning and delivery of services. More importantly, the research team would hope that these findings will be of most benefit to those living with HIV/AIDS themselves.

In the course of conducting the research interviews, literature reviews and feeding back results, several gaps in the research, policy and community action response were identified. Some of these have been hinted at earlier, but others deserve highlighting.

  • As a forum for people with AIDS to have a voice and articulate the experience of illness, the Transitions interviews were a unique undertaking. Despite pointing out the shortcomings in this research area - namely, that very little research allows for people unwell with AIDS to openly reflect on their experiences - there is little evidence since that this type of research is beginning to occur. Certainly, there is a growing literature about uncertainty and illness and a few attempts to identify differences in asymptomatic and symptomatic PLWH/A but much space remains for facilitating such dialogue. Neither should this space be confined to research circles; it would seem imperative that policy-makers and support organisations are exposed to more personal experiences of illness, and specifically, what people think and feel when they get sick. Formulating policies and projects based on the strategies PWA use to cope with sickness and how this changes and/or influences ideas about self are obvious fruits of this type of investigation. Furthermore, it is critical that responses to a unique illness like AIDS - with its fluctuations that actually allow for seriously ill people to lucidly articulate their experiences - to contribute to a broader understanding of palliative care.
  • We were also interested in the way experiences of illness impact on a person's relationship with others and in particular, how it changes or influences relationships. In this area, a great deal of research has attempted to qualitatively and quantitatively measure the impact of social support on the health of PLWH/As. However, there is again a shortfall in the amount that PWAs themselves contribute to this literature. For instance, many of the Transitions participants clearly experienced profound changes in their relationships as they became ill. This was another salutary reminder to those who hold on to assumptions of social supports remaining basically the same from the point of HIV diagnosis to death.
  • Another underestimated marker of significance in the transition from HIV to AIDS is the point of AIDS diagnosis. Whilst treatments optimism offers realistic hopes of enhanced survival time through early intervention following an HIV diagnosis, diagnosis of an AIDS category illness may come to represent a more traumatic period as one potentially confronts fears (eg shock, denial) conventionally addressed from the point of HIV diagnosis. As mentioned previously, it seems reasonable to expect that the more favourable the treatments climate is, the greater the sense of disappointment and anger for people becoming ill and then dying with AIDS. This is not to deny that a great deal of progress has also been made in the treatment of AIDS-related illnesses; rather, it suggests that in the rush to embrace the promise of new treatments, we do not overlook those for whom an AIDS diagnosis still powerfully connotes the "beginning of the end".

Above all, the voices of the Transitions participants confirms the wildly fluctuating nature of living and dying with HIV/AIDS. No two persons respond the same to any influence during this Roller Coaster period. And while for some the Roller Coaster shows some signs of being a smoother and longer ride, for many it continues to lurch around corners, catapult down vertical precipices and loop the loop. In the midst of such turbulence, it seems more critical than ever that all those infected and affected by the pandemic stay on board and work together to better respond to the enormous complexity of HIV/AIDS. This research and many other projects would further suggest that the more effective policy and program responses are those shaped by the words of people living and dying with HIV/AIDS, rather than vice-versa.

Endnotes

15. Alan Brotherton (1997), Sex, Drugs & Community: Implications of New Treatments for Gay Educators, Sydney: AFAO Policy Paper.

16. Douglas Ezzy, Ian Grubb, Richard de Visser & Diana McConachy (1997) PLWHA Snapshots: Treatments, Accommodation and Employment. A Community Report, La Trobe University, Melbourne: NCHSR (PLWH/A & Carers), p.9.