Two women with chronic health problems stemming from historical events give medical educators feedback about their health care experiences
Considering the difference in their ages and their life courses, Kate Mulvany and Trish Jackson have much in common.
Both were born with defects and conditions either directly caused by, or associated with circumstances their parents found themselves in. Both have chronic health issues.
Both have had overwhelmingly negative experiences with the Australian health care system.
Trish Jackson is in her mid-50s. When her mother was in the early stages of pregnancy with Trish, late in 1961, she attended her general practitioner’s surgery for help with a severe migraine.
The drug her mother was prescribed, and took just once, was thalidomide (alpha-phthalimido-glutarimide).
Trish was subsequently born with defects which are now considered typical of thalidomide, even though “not one [was] unique to that drug”.1
She has bilateral upper limb amelia, six holes in her heart, and had to have a heart valve replacement in 1999. She is in chronic nerve pain, and has what she describes as “bad temperature control”. She uses her right foot as a hand, but joint pain in her leg is a constant. Pain medication causes her to gain weight, which reduces the flexibility needed to use her foot effectively.
Children of the mist
Kate Mulvany is 37 years old, and is a successful actor and playwright (“The Seed”). She was seen on Australian television screens most recently in the crime drama “Winter”.
She is also a “child of the mist”.
Her father is a Vietnam veteran who was exposed to toxic herbicides used as defoliants including dioxin and now collectively known as “Agent Orange” during his tour as a “nasho”. He has had his own health issues, including severe post-traumatic stress disorder (PTSD) and a recent, successful fight against throat cancer.
Kate was diagnosed with a football-sized Wilms tumour on her left kidney when she was 3 years old. It was removed, but subsequent radiation therapy damaged the ribs and vertebrae on her left side which affected growth.
When she was 10 she was declared cancer-free, but at the age of 19 she was told that she was unlikely to have children.
“That’s when I started getting a bit angry”, Kate tells the MJA.
“I set about doing my own research and that’s when I got struck by this second wave of doctors, that I’m still dealing with, who are younger and energized but they don’t know what the hell I’m talking about when I walk in and say I was an Agent Orange baby.
“If you go to enough doctors who don’t know, you stop going and I stopped, and I regret that I stopped, but I got so sick of having to explain the Vietnam War.”
Kate was the subject of an “Australian Story” on the ABC in 2012, after which, she says, renal cancer was added to the list of diseases the Department of Veterans’ Affairs regards as associated with exposure to the herbicides used on Vietnam.
Kate says the government now acknowledges that some heart disease, spina bifida, hydrocephaly, cleft lip and renal disease could be dioxin-related.
“Too grossly deformed”
For Trish Jackson, negative health care experiences began minutes after her birth.
“When I was born my mother was not allowed to see me for 3 days”, she tells the MJA. “The doctor told her that I was too grossly deformed and that she should take me home and smother me.”
With the exception of the cardiologists at Prince Charles Hospital in Brisbane, who patched up the holes in her heart in 1974 and replaced her heart valve in 1999 — “they are amazing” — she has little time for the medical profession.
She has had doctors call her a “cripple”, and it’s not unusual for a doctor to have no idea about thalidomide or what health care problems she has apart from those obvious to the eye.
With fewer than 40 thalidomide survivors in Australia, it’s perhaps not surprising that doctors may start from a position of little knowledge but it is some doctors’ attitude to learning about her conditions that frustrates Trish.
Recently she found a GP who listened.
“I have a lot of drug intolerances”, she says. “I have a recurring digestive problem and I told my GP that one particular tablet had helped me before. She said ‘you know your body better than I do’.
“It was a breath of fresh air.”
But doctors move on, and Trish’s GP moved to another practice too far away for Trish to travel to.
“Now I have to start training another GP from scratch again”, she says.
Professor Judy Searle, chief executive officer of the Medical Deans of Australia and New Zealand, says feedback from patients like Trish and Kate is vital if the health system is to continue to improve.
“The truth is, there are a lot of things doctors don't know, historical [events] through to new breakthroughs”, Professor Searle says.
“But what medical training should do is provide doctors with the skills to recognise when they don't know something, find out more and seek additional help.
“All health practitioners, including doctors, should be good communicators. Such skills are key attributes to being a good doctor.”
Professor Ross Coppel, acting Dean of the Faculty of Medicine, Nursing and Health Sciences at Monash University in Melbourne, tells the MJA that medical courses attempt to teach not just clinical skills, but habits for life-long learning.
“Doctors’ clinical experiences and continuing medical education, together with reflection on what they have done, should continue to develop their clinical acumen throughout their careers”, Professor Coppel says.
“Hopefully, a practitioner confronted with a thalidomide sufferer would not rely just on what they learnt during their course, however many years ago it was, but also more recent learning, together with their network of clinical colleagues and the most recent medical literature.”
Dr Frank Jones, president of the Royal Australian College of General Practitioners (RACGP) tells the MJA that GPs treat each patient’s concerns with “equal importance and give the appropriate care, attention and treatment required”.
“GPs are expert generalists and are comprehensively trained in a way that equips them with a core set of skills to diagnose and provide the most appropriate treatment for a broad range of health issues”, Dr Jones says.
“Whether a patient presents with a straightforward or a complex health concern, the management of a range of illnesses, including those which may have arisen from events past, is a fundamental proficiency for all GPs.
“When dealing with complex health conditions, GPs may refer to guidelines and a range of other resources.
“For example, GPs can refer to materials provided by the Department of Veterans’ Affairs specifically related to the health concerns of veterans.
“GPs are trained in the primary care management of PTSD and, if required, can seek additional training.”
Kate Mulvany, who now works as an ambassador for dioxin advocacy group Agent Orange Justice, knows exactly what she would say if she could stand in front of a roomful of medical students.2
“More important than the people who come in and say I’ve got this illness and it’s from dioxin, there are going to be three times as many coming in and saying I’ve got this unexplained thing happening, and I don’t know where it’s come from”, she says.
“Don’t just go, ‘okay, well, we’ll treat that’. Go to the effort of helping them find out where it’s come from. Take the time to ask more questions. Listen, rather than talk.”
The full interview with Kate Mulvany, including information about her work as an ambassador for Agent Orange Justice and the Vietnamese “children of the mist”, is available as a podcast at www.mja.com.au/multimedia/podcasts, and as a video at www.mja.com.au/multimedia
- Smithells RW, Newman CG. Recognition of thalidomide defects. J Med Genet 1992; 29: 716-723.
- Agent Orange Justice http://www.agentorangejustice.org.au