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Behind the curtain of their universe

Behind the curtain of their universe. A discussion of the personal impact of ARVs by Bruce Hugman Consultant to the Uppsala Monitoring Centre Pretoria, 1-10 September 2004. In 1992, my partner of ten years, Roy David Deakin, died of AIDS-related illness at the age of 32 .

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Behind the curtain of their universe

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  1. Behind the curtain of their universe A discussion of the personal impact of ARVs by Bruce Hugman Consultant to the Uppsala Monitoring Centre Pretoria, 1-10 September 2004 Bruce Hugman, Pretoria 2004

  2. In 1992, my partner of ten years, Roy David Deakin, died of AIDS-related illness at the age of 32 Bruce Hugman, Pretoria 2004

  3. Why are we starting this workshop on drug safety with something as unscientific as personal stories about patients? Bruce Hugman, Pretoria 2004

  4. Behind all medical enterprise is a concern for people – for individuals, groups and populations. Bruce Hugman, Pretoria 2004

  5. It is an integral part of all the great human charters: the freedom to enjoy life, liberty and health. Bruce Hugman, Pretoria 2004

  6. Behind the national figures, the continental figures, the global figures, are millions of precious individuals, with their own complex spiritual, social and emotional universes, and their own unique personalities. Bruce Hugman, Pretoria 2004

  7. When a loved one is seriously or terminally ill, nothing but the best will do, and you will fight for their comfort and welfare with every ounce of your strength Bruce Hugman, Pretoria 2004

  8. Roy’s storyIn 1990 we knew that time was limited and the priority was resisting infections, managing infections, and maintaining quality of life Bruce Hugman, Pretoria 2004

  9. About two years from diagnosis to death Bruce Hugman, Pretoria 2004

  10. Progression through PCPCMV retinitis (blindness), cryptosporidium (chronic diarrhoea)open skin lesions, KS Cause of death: acute sphenoid sinusitis and osteomyelitis of the sphenoid bone; AIDS Bruce Hugman, Pretoria 2004

  11. Drugs included: Foscarnet, Ganciclovir, AZT, Pentamadine, Diamorphine, Hyoscine, Midozolam, steroids; a range of antibiotics; Devices: Hickman line and syringe driver Bruce Hugman, Pretoria 2004

  12. Recurrent symptoms included: headache, diarrhoea, nausea, vomiting, constipation; general debility; weight loss, sweats, dehydration; partial and eventual complete blindness Bruce Hugman, Pretoria 2004

  13. > Reconciliation to death in an uncertain timescale> Management of specific symptoms and diseases and general, unspecified process of disease/debility> Response to rapid cycles of change in specific symptoms and general welfare (rollercoaster) Bruce Hugman, Pretoria 2004

  14. > Managing disease with a view to maximising quality of life, even at the expense of quantity (a negotiated decision)> Targeting specific periods for maximum energy and quality (world trip)> Maintaining psychological and spiritual welfare (patient and carer/partner); the inextricable mix of patient and carer psychology, energy, commitment Bruce Hugman, Pretoria 2004

  15. > Exploiting/relishing periods of potential energy and quality (maybe minutes)> Mourning> Letting go – accepting death (patient and partner) Bruce Hugman, Pretoria 2004

  16. We are inclined to see our brief encounters as the fulcrum of the family’s day … It is only when we see behind the curtain of their universe that it is so clear how peripheral and on occasion inappropriate our actions were … Bruce Hugman, Pretoria 2004

  17. Text available on mail@brucehugman.net Bruce Hugman, Pretoria 2004

  18. At any one time we were using anything from eight to fifteen drugs a day: some by intraveous drip or Hickman line; some by syringe driver; many in tablet form; some in preparations for topical use; some nebulised. Bruce Hugman, Pretoria 2004

  19. This complex process of discussion, diagnosis and clinical decision sometimes took place daily and the regime was sometimes changed daily Bruce Hugman, Pretoria 2004

  20. The welfare of the healthy partner played an important part in the wellbeing of the patient Bruce Hugman, Pretoria 2004

  21. The quality of relationships with the medical team are equally vital to the welfare of the patient. Bruce Hugman, Pretoria 2004

  22. The unpredictability of the disease processes and the impact of side effects provided a rollercoaster of a ride Bruce Hugman, Pretoria 2004

  23. Someone from the medical team was always available to talk on the phone or visit Bruce Hugman, Pretoria 2004

  24. We asked the medics to plan a regime which would provide the least negative effects and the greatest availability of energy and strength, even if there was a longer-term cost to pay Bruce Hugman, Pretoria 2004

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  26. As his condition deteriorated, we were given the option of a period on steroids to enhance quality of life Bruce Hugman, Pretoria 2004

  27. Roy died peacefully at home, when we were both ready: when, in fact, it was clear that he was not going to enjoy even the minutes of pleasure which had been available just days before Bruce Hugman, Pretoria 2004

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  29. The challenges Reconciliation to death Management of disease Response to rapid change Maximising quality of life Targeting specific periods Maintaining psychological welfare Exploiting good times Mourning Letting go Bruce Hugman, Pretoria 2004

  30. These issues and processes take us a long way from the mechanistic view of medicine: drug in; job done Bruce Hugman, Pretoria 2004

  31. What has this to do with pharmacovigilance? Bruce Hugman, Pretoria 2004

  32. Side effects played a huge part in the disease process and their management was one of the critical aspects of patient care. Bruce Hugman, Pretoria 2004

  33. Many side-effects were known and explainable; it was their unpredictability and severity that were the issues Bruce Hugman, Pretoria 2004

  34. At every stage, the medical team laid out the options for us, including the likely benefit and harm, and the degree of effectiveness or risk in any possible therapy. Bruce Hugman, Pretoria 2004

  35. Denis’s storyDiagnosed HIV+ in about 1995 in his late twenties; largely healthy and disease-free under three combination therapy regimes; moving towards salvage recently Bruce Hugman, Pretoria 2004

  36. What I remember mostly about him was his heroic defiance of the almost permanent side effects of his drugs: particularly headaches, liver discomfort, lipodystrophy, diarrhoea, general debility and mood swings. Bruce Hugman, Pretoria 2004

  37. Regular viral load, CD4 and liver-function testing prompted frequent adjustments to the regimes and, progressively, raised more and more questions about his survival, as one combination after another eventually failed to keep the indicators positive Bruce Hugman, Pretoria 2004

  38. He was fighting for life, for the best treatment available Bruce Hugman, Pretoria 2004

  39. Underlying all this was the knowledge of a likely early death, preceded by illness and incapacity, and accumulating despair and desperation Bruce Hugman, Pretoria 2004

  40. They both experienced side effects or therapeutic failures which were sometimes uncomfortable, sometimes disabling, and occasionally dangerous Bruce Hugman, Pretoria 2004

  41. These were all relatively frequent occurrences, and their resolution was always a negotiated therapeutic decision Bruce Hugman, Pretoria 2004

  42. Their medical welfare was intimately bound up with their social and psychological welfare Bruce Hugman, Pretoria 2004

  43. Both of them were surrounded by family and friends who knew the score, both medically and psychologically Bruce Hugman, Pretoria 2004

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  45. Their lives were both prolonged and enhanced by the knowledge of their medical teams, knowledge accumulated from, amongst many other sources, the meticulous observation and reporting of side effects, and the processing and assessment of information about them from clinicians all over the world Bruce Hugman, Pretoria 2004

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  47. Reducing the statistics of death is not a credible moral purpose if the effect of the effort on large or small numbers of survivors is to leave them unhappy, regretful, despairing or disabled Bruce Hugman, Pretoria 2004

  48. Good medicine assesses the balance of benefit and harm of any intervention from a therapeutic/scientific point of view AND FROM THE PATIENT’S POINT OF VIEW Bruce Hugman, Pretoria 2004

  49. Good medicine assesses the risks of any intervention from a therapeutic/scientific point of view and takes risks on the basis of the PATIENT’S INFORMED CONSENT Bruce Hugman, Pretoria 2004

  50. The starting point for responsible judgement of a course of therapeutic action is knowing what effects it has on people: what positive effects; what expected and unexpected damage it may do; how severe and how serious; how frequent; and what the preventable or inevitable causes might be. Bruce Hugman, Pretoria 2004

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