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
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 PCP
CMV 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 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
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 story
Diagnosed 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 liverfunction 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
Bruce Hugman, Pretoria 2004