Author: Susan Ball
How do you care for the victims of an emerging plague which has blindsided science and defied all treatments? In this book about the defining epidemic of ‘the roller-coaster last decade of the twentieth century’, the author relates her touching experience as a physician looking after 130 AIDS patients in New York in the 1990’s. It is a harrowing account of a time when doctors treating people with HIV had no ‘guidelines or algorithms, no textbooks or handbooks or cheat sheets‘ to rely on, and the grim prognosis meant they ‘helplessly watched as their patients died’. The book’s key message however was that, even in such dark times, the instinct to provide humane and empathic care should overcome the despair. With heartbreaking stories of brave patients, and uplifting accounts of dedicated healthcare workers, the book is a masterclass in how to care when cure is out of reach. The book is also a story of the rewards of patient perseverance, describing as it does how the eventual introduction of effective combination drug therapies lifted the ‘deep gloom of AIDS’, and offered patients ‘a fairly normal life expectancy‘ (pages 2, 20 and 183).
The most compelling feature of the book is the author’s sympathetic portrayal of her patients whom she described as ‘an array of brave, deprived, strong, entitled, admirable, self-centred, amazing, strange, funny, daring, gifted, exasperating, wonderful, and sad‘ people (page 1). All the stories depicted the heavy physical and emotional brunt of AIDS on its victims. The story of Yolanda for example reflects this quite graphically; even though she was in excruciating pain with her third episode of herpes, which had ‘come on with a snarling aggression and intensity‘, what she most needed was a friend (pages 57-60). The impact of AIDS on Sabitha was similarly poignant; she was a ‘voluptuous, gorgeous young woman‘ who AIDS turned into ‘an old lady who needed diapers and someone to feed her’ (page 162). The story of Marco also illustrated the burden that AIDs imposes on its sufferers as reflected by how his ‘constant watery diarrhoea‘ from cryptosporidium ‘slowly sapped all his strength, all his fat, all his muscle mass’ (page 134). The other stories the author narrated all similarly captured the characteristic manifestations of AIDS, for example when she depicted Kaposi’s sarcoma as ‘the unwilling mascot of the dreaded epidemic’ (page 153).
At the heart of the author’s narrative is the impact of stigma on the victims of AIDs, a sad phenomenon which she said ‘spread even faster than the disease itself’. She identified several reasons why so many people stigmatised the victims of AIDS, ranging from their real fear of the disease, to their ‘pure distaste of the clientele‘ and their lifestyles. She illustrated how AIDS ‘brought out the worst in people’, with the result that many victims were sacked by their employers, evicted from their schools, and rejected by their families (page 19). Even more disheartening for the author were the instances when healthcare personnel stigmatised HIV infected people by refusing to care for them, or by treating them in a ‘rude and unprofessional manner’ (pages 19-20 and 44-45). She was however inspired by the majority of doctors and other healthcare workers who braved the risk of infection to treat AIDS patients appropriately, portraying them as ‘heroes‘ who came to work every day ‘to care for dying patients others shunned‘ (pages 45 and 15).
What then is the secret of caring for patients who are fated to die? The author’s answer lies in her simple principle of treating all her patients with dignity and respect. Her practice demonstrated how care was still possible in the absence of cure; this may entail just going out of her way to ensure that her patients knew she was entirely focused on their concerns, and making sure she never appeared impatient even when she had other pressing concerns (page 5). She endeavoured to ‘reach beyond the clutter of masks and gloves‘ to ease her patients’ loneliness, and she always listened to them with humility, aware that sometimes this is ‘the best care of all‘ (pages 22 and 151). Knowing that her patients were facing inevitable death, she dispensed with the cloak of the professional physician and viewed herself as just another human being, ‘a fellow traveller in this crazy world’; in this way, she was able to acknowledge and witness their suffering, and to offer them ‘a few moments of companionship‘ (pages 28-29).
A major theme of the book is the emotional impact on the caregiver of caring for people with incurable diseases such as AIDS. The author noted that this heavy toll of compassionate care is because ‘it was impossible not to become personally involved‘ (pages 37-38). Particularly harrowing was the effect the frequent deaths of patients with AIDS had on their health care providers, a passing they often watched helplessly as ‘the man they knew faded away‘ (page 7). It was indeed very distressing for the author, at the peak of the AIDS epidemic, to know that every one of her patients was ‘a living dead person’ on an inexorable journey to mortality (page 11). To mitigate the emotional impact of caring during the epidemic, the author and her colleagues drew strength from each other, using coping strategies such as humour ‘to let off steam and to temper the tragedy‘ (page 53). They also established a formal support group which she said ‘was our safety net, a place to catch us and help us process some of the acute emotions that we experienced as part of our daily work’ (page 111).
The latter part of the book described the slow and often frustrating process of finding effective treatments for HIV, and how this impacted on AIDS patients and their carers. For example, the author depicted the high hopes that accompanied the introduction of AZT, and how this was followed by dashed hopes when it turned out that AZT did not prolong survival in AIDS (page 33-35 and 104). She also reflected the cautious optimism that accompanied the introduction of the protease inhibitors which, exhilaratingly, turned out to be very effective when used in combination with the reverse transcriptase inhibitors (page 174, 181, and 204). As this major achievement dramatically enhanced the outlook of patients with AIDS, and the burden of caring for them diminished, the author noted that it sadly, and paradoxically, also eroded the camaraderie that existed within the healthcare team.
This book is a humbling account of the victims and caregivers of the AIDS epidemic. It focuses on the lives of individuals, and avoids the political intrigues that typify other narratives about AIDS. The author succeeded in highlighting the important place of empathy in the care of a devastating and stigmatising disease. She made the strong argument that, whilst she could offer no cure for her patients, she had many opportunities to dispense compassion. The story-telling was occasionally marred by the author’s preference for using dialogues. The prose was otherwise clear and appropriately projected the themes set out by the author.
This book deals with a landmark epidemic which defined clinical medicine for a generation. Whilst the book was published long after the AIDS epidemic, the lessons it teaches remain relevant to the care of people who are facing terminal diseases. The author provides a roadmap on how devising caring strategies when facing uncharted diseases. She highlights the inevitable uncertainties, and explores the ethical and social issues which go beyond the disease. The contents are relevant to healthcare at all times, and I recommend it to all doctors.
Publisher, Place, Year: ILR Press, London, 2015
Number of chapters: 18
Number of pages: 249
Star rating: 4