bruce hugman, pretoria 2004 behind the curtain of their universe a discussion of the personal impact...

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


In 1992, my partner of ten

years, Roy David Deakin, died of AIDS-related illness at the age of

32


Why are we starting this workshop on drug safety with something

as unscientific as personal stories about

patients?


Behind all medical enterprise is a concern for people – for

individuals, groups and populations.


It is an integral part of all the great human charters: the

freedom to enjoy life, liberty and health.


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.


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


Roy’s story In 1990 we knew that time was limited and

the priority was resisting infections,

managing infections, and maintaining quality

of life


About two years from

diagnosis to death


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


Drugs included: Foscarnet, Ganciclovir, AZT, Pentamadine,

Diamorphine, Hyoscine, Midozolam, steroids; a range of

antibiotics; Devices:

Hickman line and syringe driver


Recurrent symptoms included: headache, diarrhoea, nausea,

vomiting, constipation; general debility; weight loss, sweats,

dehydration; partial and eventual complete blindness


> 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)


> 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


> Exploiting/relishing periods of potential energy and quality

(maybe minutes)> Mourning

> Letting go – accepting death (patient and partner)


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 …


Text available on

[email protected]


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.


This complex process of discussion, diagnosis and

clinical decision sometimes took place daily and the regime was sometimes

changed daily


The welfare of the healthy partner played an important part in the wellbeing of the

patient


The quality of relationships with the

medical team are equally vital to the

welfare of the patient.


The unpredictability of the disease processes and the

impact of side effects provided a rollercoaster of a

ride


Someone from the medical team was always available to

talk on the phone or visit


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


As his condition deteriorated, we were given the option of a

period on steroids to enhance quality of life


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


The challenges

Reconciliation to death Management of diseaseResponse to rapid changeMaximising quality of lifeTargeting specific periods Maintaining psychological welfareExploiting good timesMourningLetting go


These issues and processes take us a long way from the

mechanistic view of medicine:

drug in; job done


What has this to do with pharmacovigilance?


Side effects played a huge part in the disease process and their management was one of the critical aspects of

patient care.


Many side-effects were known and

explainable; it was their unpredictability

and severity that were the issues


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.


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


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.


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


He was fighting for life, for the best treatment available


Underlying all this was the knowledge of a likely early death, preceded by illness

and incapacity, and accumulating despair and

desperation


They both experienced side effects or therapeutic failures

which were sometimes uncomfortable, sometimes disabling, and occasionally

dangerous


These were all relatively frequent occurrences, and

their resolution was always a negotiated therapeutic

decision


Their medical welfare was intimately bound up with

their social and psychological welfare


Both of them were surrounded by family and

friends who knew the score, both medically and

psychologically


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


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


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


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


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.


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


Roy David Deakin

22 December 1959 - 27 March 1992

bruce hugman, pretoria 2004 behind the curtain of their universe a discussion of the personal impact...

Documents

bruce hugman consultant

death slide

partner slide

commitment slide

strength slide

quality of life slide

syringe driver slide

sphenoid bone aids slide