Post on 25-Dec-2015
Bruce Hugman, Pretoria 2004
Behind the curtain of their universe
A discussion of the personal impact of ARVs
by
Bruce HugmanConsultant to the Uppsala Monitoring
CentrePretoria, 1-10 September 2004
Bruce Hugman, Pretoria 2004
In 1992, my partner of ten
years, Roy David Deakin, died of AIDS-related illness at the age of
32
Bruce Hugman, Pretoria 2004
Why are we starting this workshop on drug safety with something
as unscientific as personal stories about
patients?
Bruce Hugman, Pretoria 2004
Behind all medical enterprise is a concern for people – for
individuals, groups and populations.
Bruce Hugman, Pretoria 2004
It is an integral part of all the great human charters: the
freedom to enjoy life, liberty and health.
Bruce Hugman, Pretoria 2004
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
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
Roy’s story In 1990 we knew that time was limited and
the priority was resisting infections,
managing infections, and maintaining quality
of life
Bruce Hugman, Pretoria 2004
About two years from
diagnosis to death
Bruce Hugman, Pretoria 2004
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
Drugs included: Foscarnet, Ganciclovir, AZT, Pentamadine,
Diamorphine, Hyoscine, Midozolam, steroids; a range of
antibiotics; Devices:
Hickman line and syringe driver
Bruce Hugman, Pretoria 2004
Recurrent symptoms included: headache, diarrhoea, nausea,
vomiting, constipation; general debility; weight loss, sweats,
dehydration; partial and eventual complete blindness
Bruce Hugman, Pretoria 2004
> 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
> 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
> Exploiting/relishing periods of potential energy and quality
(maybe minutes)> Mourning
> Letting go – accepting death (patient and partner)
Bruce Hugman, Pretoria 2004
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
Text available on
mail@brucehugman.net
Bruce Hugman, Pretoria 2004
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
This complex process of discussion, diagnosis and
clinical decision sometimes took place daily and the regime was sometimes
changed daily
Bruce Hugman, Pretoria 2004
The welfare of the healthy partner played an important part in the wellbeing of the
patient
Bruce Hugman, Pretoria 2004
The quality of relationships with the
medical team are equally vital to the
welfare of the patient.
Bruce Hugman, Pretoria 2004
The unpredictability of the disease processes and the
impact of side effects provided a rollercoaster of a
ride
Bruce Hugman, Pretoria 2004
Someone from the medical team was always available to
talk on the phone or visit
Bruce Hugman, Pretoria 2004
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
Bruce Hugman, Pretoria 2004
As his condition deteriorated, we were given the option of a
period on steroids to enhance quality of life
Bruce Hugman, Pretoria 2004
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
Bruce Hugman, Pretoria 2004
The challenges
Reconciliation to death Management of diseaseResponse to rapid changeMaximising quality of lifeTargeting specific periods Maintaining psychological welfareExploiting good timesMourningLetting go
Bruce Hugman, Pretoria 2004
These issues and processes take us a long way from the
mechanistic view of medicine:
drug in; job done
Bruce Hugman, Pretoria 2004
What has this to do with pharmacovigilance?
Bruce Hugman, Pretoria 2004
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
Many side-effects were known and
explainable; it was their unpredictability
and severity that were the issues
Bruce Hugman, Pretoria 2004
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
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
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
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
He was fighting for life, for the best treatment available
Bruce Hugman, Pretoria 2004
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
They both experienced side effects or therapeutic failures
which were sometimes uncomfortable, sometimes disabling, and occasionally
dangerous
Bruce Hugman, Pretoria 2004
These were all relatively frequent occurrences, and
their resolution was always a negotiated therapeutic
decision
Bruce Hugman, Pretoria 2004
Their medical welfare was intimately bound up with
their social and psychological welfare
Bruce Hugman, Pretoria 2004
Both of them were surrounded by family and
friends who knew the score, both medically and
psychologically
Bruce Hugman, Pretoria 2004
Bruce Hugman, Pretoria 2004
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
Bruce Hugman, Pretoria 2004
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
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
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
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
And that’s why what drug surveillance accomplishes is such
a high priority; that’s why this meeting is so important, and
what you do in the future so vital, not just to the survival rate
statistics, but to the welfare and optimism of the people of Africa
Bruce Hugman, Pretoria 2004
Roy David Deakin
22 December 1959 - 27 March 1992
Bruce Hugman, Pretoria 2004