A tribute to my father

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A year ago today, I was sitting at my desk preparing for a huge Thursday and Friday when I got a text message from my stepmother Rose, “Dad in hosp emergency fell on carpet 4am bad headache being checked. Will keep you informed. X r” I slumped physically. This could only mean a bleed on the brain. For Dad, that was incredibly serious. He had chronic myeloid leukaemia (CML) and he bled very easily.

Clotting is something we take for granted. In Dad, it did not work at all well. A simple scratch would take an uncomfortably long time to stop bleeding. Cleaning his teeth could set off gum bleeding. A bleeding nose was worrying. His body leaked in this sinister way and it was unsettling. For dental work, Dad would need a platelet transfusion the day before. Surgery was out of the question and meant he had to endure painful arthritic knees that were long overdue for replacement. His leukaemia led to chronic tiredness, which made Dad even quieter than he usually was.

Dad had been on expensive treatment that took weeks to obtain. It was not an overnight cure for his atypical form of CML but it had made some difference. In that month he had been able to walk around Dove Lake in Tasmania and survive a fall that gave him a big graze. He had renewed energy and the night before his bedroom fall, had had a lovely night out with friends, almost back to his jovial self.

But sometimes death comes from the most simple of activities. And it did for Dad. A faint in the bedroom set off a catastrophic bleed to his brain that no intervention could stop. His subdural haematoma was bilateral and they made the considered decision to not operate due to his bleeding risk, hoping it would abate. By 6pm when I arrived he was in the emergency department awaiting transfer to neurosurgical intensive care. But in retrospect, I see that at that time his level of consciousness was on a rapid downhill slide.

I see that evening as a series of events: He shields his eyes from the light and dry reaches, I look for a buzzer to call somebody but can’t find it, a nurse finally arrives to give Dad morphine for the headache, Dad crashes, “Dad, wake up, wake up Dad”. The Narcan fails. “He’ll need to go to resus” says the doctor urgently. They unlock the bed wheels but the decoupling of monitors and releasing of bed breaks is stalled and chaotic.

There is an undignified rush to the resuscitation bay where staff to patient ratios have increased eightfold, we are ushered into a waiting room, the head of ED arrives and screws up his face as he tells us of Dad’s fixed pupils. I fall apart. A kind volunteer offers me and Rose a cup of tea. The neurosurgical registrar seeks our urgent consent to operate, we mention his living will and desire for quality of life, the registrar gives us a fixed stare. I feel abandoned to this decision and wish he had been taught about shared decision making. Now intubated, we kiss him goodbye.

Leaving, we notice another patient in the cubicle next to Dad’s. Lying flat on his back, his face is the colour of marble and he looks terrible but  no staff are attending him. Quickly we realise it’s a mannequin. Dad would’ve laughed uproariously.

Hours later, Dad returns from surgery where they tried to address the haemorrhage. His head is shaved and sutured like something out of a science fiction movie. We update family and get a few hours of sleep.

Rose and I arrive back in ICU the next morning. Dad remains deeply unconscious. When they organise a family conference with the social worker, two junior doctors, his nurse and the head intensivist, you know it’s about turning off life support. I learn later this is called the ‘black hat brigade’. With these sombre companions, we search the brand new ICU complex for a quiet room.

When I studied doctor –patient communication during my PhD, there were entire chapters in the Medical Library on how to deliver bad news. The head of intensive care did it well. He was straight and didn’t muck around. “I’m afraid we’ve reach the point of no return”. His compassion, his body language, what he said – everything made it easier. His life support would be turned off and he would die. But when? There are siblings overseas. In the end, he guided us in putting Dad first and giving him a death with dignity – to leave some time to say goodbye but to not draw things out.

Screenshot 2014-03-06 21.53.49So the next five hours was spent quietly with him. We mulled in the room, holding his hand, kissing his temple, being there. I was in constant contact by phone with my four siblings in Paris, Hong Kong, Brisbane and Melbourne. I held the phone to Dad’s ear as each of them said their last goodbye.

They turned off Dad’s ventilator at 4.30pm and he left us fairly quickly. His beautiful voice uttered its last groan as he exhaled one final breath.

It was the voice that had sung to me as a child “I see the moon and the moon sees thee, shine on the one I love”, or “Happy Birthday dear Julie” each morning of my March birthday. He was gone and I felt a strong sense that he wasn’t there anymore and it was time to leave.

His funeral was a joyous one, a celebration of his life with all five of us kids singing Neil Young’s Old Man and many tributes read. The crematorium chapel was packed.

At the funeral, I conveyed a few small memories that seemed to capture him well. His hand tremor that made us (and him) glad that he wasn’t a surgeon. He was a superb driver, and I always admired the way he would deftly edge in between cars to change lanes – all grace and calm competence. He had a cheeky sense of humour and especially loved telling the Wide Mouthed Frog joke, fingers stretching his mouth across to play the frog. He was quiet but loved just being around people – us kids, his 12 grandchildren, his many friends. He was a superb host and after a few wines was loquacious and fun.

Dad and my son take a spin in a teacup in May 2004.

Dad and my son take a spin in a teacup in May 2004.

He was also wise and pragmatic. He and mum divorced in 1975 but in the process, felt that the lawyers were trying to drive a wedge between them, so they fired them. They remained friends until his death. As branch manager of a paper merchant company, he described his management style as “benevolent autocracy”.

He was also extremely principled. He had been heavily involved in a rotary club which automatically appointed the local primary school’s principal to its board. When a new female principal was appointed, she was unable to serve on the board because at the time Rotary was for men only. Dad resigned from Rotary in protest and never returned. He was a gentleman, always leaping to his feet when a woman walked into the room and always opening doors. He also had a bite and could be pretty tough with you, although mellowed in his later years.

He was generous and humble. In his retirement, he volunteered for Meals on Wheels for many years, driving round with an esky of soup and hot meals in the boot, getting to know all the homebound and lonely people in the area. Then each week he would call the bingo at the Exodus Foundation and fondly regale stories of the colourful characters there. When he left Exodus he did not want his departure marked in any way, his modesty preferring to avoid fanfare.

Dad went at age 77 years. It was too early and seemed unfair. Many of my friends and colleagues are also losing their parents, and for some 77 is still a generous lifespan. It’s still hard to believe he is gone and, one year after his death, it seems fitting that I pay tribute to him.

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MMR, autism and Facebook

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From time to time I am asked to comment on vaccine safety issues on Facebook. Today somebody had shared an article entitled “Courts Quietly Confirm MMR Vaccine Causes Autism

Here is my contribution which I am sharing because might help others in a similar position.

Bottom line – the MMR vaccine is safe and does not cause autism.

We all want to do the best for our kids. Protecting them from measles mumps and rubella is important. Measles can cause pneumonia, brain inflammation and sometimes even death. There is an outbreak in Australian right now.

Class actions in the US and UK have found against a link between vaccines and autism. Autism is a serious problem and the cause is not known but it does run in families and affects boys more.

The theory that vaccines cause autism has been studied by independent experts all over the world. The Rolls Royce review is here http://www.iom.edu/Reports/2004/Immunization-Safety-Review-Vaccines-and-Autism.aspx.

Parents wanting a user friendly information might find the MMR decision aid helpful. Sample page linked below: http://www.ncirs.edu.au/immunisation/education/mmr-decision/measles.php 

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Are Australia’s immunisation rates really falling?

Our childhood immunisation rates have been climbing. Between April 2012 and March 2013 COAG reported an overall increase in Aboriginal and Torres Strait Islander children, children in certain low coverage regions, and four year olds. The report showed an increase in 25 of the 30 subgroups across all states and territories and five where there were slight reductions. It also reported on vaccine leakage or wastage – a story in itself but not discussed here.

I have put the COAG report figures into some graphs below. It gives  a snapshot of the main findings. I also discuss what can be done in the subgroups where immunisation rates are lower compared with other groups.

Aboriginal and Torres Strait Islander children

The good news is that immunisation rates in Aboriginal and Torres Strait Islander children have mostly increased. Three different age groups in each state or territory were reported. Of 24 groups, 21 had increased, with the largest increase among four year olds in South Australia jumping from just 67.1% to 85.7% – an increase of 18.6%. Just three of the 24 groups had reduced vaccination rates and these were Victoria (down by 1.5%) and WA (down by 2.2%) for the two year olds and Tasmania for the 12 months olds (down by 0.9%).

The following graph shows the overall coverage changes from baseline in this period with red arrows where coverage dropped.

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Four year olds

There has been an impressive increase in coverage for four year old children. This is probably related to the previous government’s decision to link receipt of Family Tax Benefit Part A with on-time immunisation. Queensland remained worryingly low and it is not clear why this is the case.

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Low coverage areas

Some states or territories have named certain regions within them as ‘low coverage’ areas. For the 12-15 month old age group, this included NSW, WA and Tasmania.

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NSW reported a 0.3% reduction, a finding that the Daily Telegraph picked up on this week with the headline “COAG Reform Council Shows Vaccination Rates Fall Further In Some Areas“.  Immunisation rates do jump around slightly, but to me this newspaper missed the overall story in their pursuit of a more dramatic angle.

The idea that Australia’s immunisation rates are falling generally has been propagated widely in Australia this year in the media. But it is simply wrong, as seen in the graph below produced by the National Centre for Immunisation Research and Surveillance. Our national coverage is stable and has in fact increased in the four year old age group nationally. It seems irresponsible to propagate this idea of falling national coverage and shows an implicit disregard for the evidence. It has also spurred newspaper editors, professionals and politicians to seek quick and poorly thought out policy solutions.

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While vaccination rates are not declining nationally, averages can mask significant variations in regions and sub-groups. Mostly where rates are lower, it’s about timeliness. A four year old may have had all her baby vaccines but if she is more than three months late four year old vaccines, she will be in that group counted as not fully immunised. Reminders and recalls that help prompt parents when a vaccine is due or overdue, can certainly increase vaccination rates. NSW has produced an app that does this. But parents who tend not to vaccinate on time also tend not to opt-in for such things. For them, Australia could invite all parents postnatally to be enrolled into an SMS reminder system linked to the Australian Childhood Immunisation Register.

Helping motivated parents to access timely vaccination can be done with the right strategies. But parents and whole communities who are less motivated to vaccinate present a much bigger challenge. For many years we have put them in the ‘too hard basket’ and for years, the rates of vaccine refusal in such communities have stagnated. But with lower coverage, they are more vulnerable to disease outbreaks, it is time to ‘brave the discontent’.  Our research group is now starting a series of studies that will build a situational analysis of such communities. By working with a range of partners, we hope to develop some promising approaches that respectfully help parents and communities to make the best quality choices about vaccination.

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The figure above shows how parents who decline vaccination and register their conscientious objection cluster in certain regions of Australia.

Source: NCIRS http://www.ncirs.edu.au/immunisation/coverage/maps/index.php

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In defence of bureaucrats

The public often maligns bureaucrats. They are said to be obsessed with procedure, dull, lazy, erecting barriers to innovation, even corrupt. When it became clear that the conservative Coalition would win government in Australia, Rupert Murdoch put the boot in with this Tweet, “Aust election public sick of public sector workers and phony welfare scroungers sucking life out of economy.”

Literature is also replete with bureaucrat bashing, often very amusing. In Hitchhikers Guide to the Galaxy, Arthur Dent seeks to find out why his house is set for demolition that day without his prior knowledge. He encounters Mr L Prosser, who is “40, flabby and fat and works for the local council”. Prosser insists that the demolition plans had been available in the local planning office for the last nine months. Prosser is unrepentant when Arthur points out that they were “on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying Beware of the Leopard”.

In Harry Potter and the Goblet of Fire, Harry and co encounter the officious and smug Percy Weasley from the Department of International Magical Cooperation who must finish a report to standardize cauldron thickness.

Bureaucrats are the people we love to complain about. Mostly the complaints go unchallenged. The bureaucrat cannot phone the local radio station or write to a local paper to defend their work nor the complexities they deal with behind the scenes. Their jobs usually require them to maintain a dignified silence. 

While most of us will feel the impact when bureaucracy functions poorly, we are usually blissfully ignorant of the benefits when it functions well – even just reasonably well.

Refreshingly, this week Croakey published an article by Professor Tarun Weeramanthri who heads up the Public Health and Clinical Services Division in the Department of Health in Western Australia. Professor Weeramanthri talks about the backroom staff who perform important duties, from laboratory staff right through to those who work on legislation and finance.

When we go to hospital or a GP clinic, a doctor, nurse, midwife or allied health professional will care for us, help birth our babies, dress our wounds, pin and plate our bones, help our rehabilitation. We see and feel their cures and well up with gratitude at their competence and care.

But consider the absence of illness enjoyed because of people in the backroom.

  • The middle-aged adults who don’t get cancer, heart disease or emphysema in 2050 because a bureaucrat implemented an effective policy to reduce youth smoking now.
  • The women who are, or will be, free of pre-cancerous cervical lesions because a team of bureaucrats successfully coordinated the delivery of an HPV vaccination program in their schools when they were adolescents.
  • The children and adults who avoid dentist visits for fillings and extractions because a bureaucrat negotiated with a hesitant council to agree to fluoridate their drinking water supply.

The bureaucrat mostly does these things silently and without fanfare. Being a bureaucrat doesn’t have much dash about it. It’s about serving the public usually in banal, ordinary and unseen ways. But the work is important for a healthy and well functioning society and even if bureaucrats can’t defend themselves, those of us who get a glimpse of their work occasionally will.

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Vaccination and the art of gentle persuasion

Vaccination and the art of gentle persuasion

This blog has been re-posted from The Conversation. In it, I summarise a framework for communicating with parents about vaccination that a team of us worked on and published here. It is a conceptual piece and we are now in the process of turning the framework into a toolkit that we will pilot then maybe trial in the future. It’s a bit like building a smartphone. It needs to be road tested and adapted until the toolkit is user-friendly, convenient, adaptable and effective. So we are starting a program of research with step one being a qualitative study with GPs, nurses and paediatricians looking into their experiences, challenges, and needs when facing the sometimes challenging task of reassuring parents about vaccination.

I’m working with a multidisciplinary group with expertise in cognitive science, immunisation, general practice, paediatrics, complex interventions and communication. They include Hal Willaby and Lyndal Trevena from the University of Sydney, Margie Danchin from the Murdock Children’s Research Institute in Melbourne and in the UK Francine Cheater from University of East Anglia, Cath Jackson from University of York, Nick Sevdalis from Imperial College London, Paul Kinnersley from Cardiff University and Helen Bedford from University College London.

Source: flickr

Source: flickr

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September 17, 2013 · 11:25 pm

Pregnant adolescents and the deficit model.

“This is effin pathetic”. Each week, a teenage girl would slump into the sofa and complain bitterly about having to be at ‘group’.

I was in my early 20s and had been employed to establish a health education program for pregnant or parenting homeless young women aged 18 years or less. They were living in an accommodation service in urban Sydney. Attending these sessions was a requirement. Most were trying to do the best they could, caring for themselves and their babies against sometimes significant obstacles, displaying enormous resilience. Some of them had drug addiction, others had been in juvenile detention, some just needed a place to live and living at home wasn’t an option. Some were under child protection orders to be there or they would lose their children.

Midwifery training did not equip me for this. Nor did nursing. Both were entrenched in the deficit model where if a person is thinking or behaving in the wrong way regarding their health, they lacked knowledge. In nursing it was called a Knowledge Deficit. The Knowledge Deficit needed to be addressed with information. Their wrong knowledge would be righted and they would alter their behaviour or thinking so it aligned with that which was conducive to their health.

My health education program ran on a top-down deficit model. I earnestly but resolutely decided what they needed to know. Sex education, domestic violence,  infection control, cookery.

I also did individual work supporting and advising the girls through their pregnancies, attending antenatal appointments, or the GP clinic when their babies were sick. We put together birth plans. I would hang out with some of them as they smoked on the balcony and lecture them on how bad this was for their babies. I developed posters and pamphlets on how you should not heat bottles in microwaves or how dental caries would come from putting babies to bed with bottles of juice.

None of this made much difference.

After a year I was ready to leave. Before I did, I attended a one day course that changed everything. It was based on William Glasser’s Reality Therapy which asked three simple questions of clients: What do you want? What are you doing? Is it working?

I learnt to work with these young women in a way that honoured their growing need for autonomy but guided them towards better solutions for them and their babies. It revolutionised my work with them.

I held a planning meeting with the girls. I would no longer decide the program, they would. They wrote down what they were good at and what they wanted to learn more about or do more of. Our sessions were now directed by them and peer led by them.

Their approach to group changed completely. The girls were cautiously happy to be there. Health promotion became more than just teaching them how to cook healthy meals. We also painted T-shirts or went to the movies – some badly needed respite and a chance to just be adolescents and have fun. The Christmas before I left, we even performed a puppet play for the children in a nearby child care centre.

Hungry for some theory to inform my practice, I went back to uni and completed a Master of Public Health. Then I did a treatise with Simon Chapman on how the media frames anti-immunisation messages. That publication led to an NHMRC project grant which turned into my PhD that looked at how different parties to debates about the safety of vaccines construct and advance their arguments, what makes vaccine scares ‘tip’ and how to avert this. Margaret Burgess and Penny Hawe were my associate supervisors. I was incredibly fortunate to be guided by these inspiring people.

In the ensuing years I have worked as a social scientist looking at what people think, feel and do about vaccination. In the last few years I have been privileged to be joined by a wonderful team of postgraduates and postdocs. This year, after four years of trying, I got a NHMRC Career Development Fellowship focused on improving communication about vaccination.

The experience with the teenage girls continues to influence me profoundly – in terms of working with communities, public engagement, health communication, the social determinants of health and achieving effective change. It was a lifetime of lessons packed into one very intense 20 months.

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