Been on a pocast…Dr Luke Crantock, Everyday Medicine
Episode 100 : Working at Central Australian Aboriginal Congress
Been on a pocast…Dr Luke Crantock, Everyday Medicine
Episode 100 : Working at Central Australian Aboriginal Congress
A NT band of musical general practitioners toured Alice Springs and communities to the west serviced by Central Australian Aboriginal Congress. They traveled with Prof. Mike Lean who is pioneering reversing diabetes on a large scale in the UK through dietary interventions – the Direct Study.
I am a general practitioner who hits “retirement age” in 3 days. I do feel qualified to ask this question but not really to answer it. It has been bugging me my whole career, but I have realised most people never contemplate this backwater of physiology.
I always expected to ask someone in the know and get a clear answer. I asked professors of paediatrics, as these muscles seem to cause a lot of trouble in young people. Nothing. I moved on to professors of respiratory medicine, as a lot of their work relates to this biological machinery that can narrow our airways. They smiled, looked around quizzically and got on with their work. More recently I trapped a respiratory professor in a pleasant restaurant, but he was not really interested. He proposed that the muscles were embryonic vestiges of bowel muscle.
You may not be interested in my explanation either. But it is an important question. These muscles are in a critical location in our lungs. The inappropriate contraction of these muscles, called asthma, is a significant cause of death in adults. It tragically happened to one of my otherwise healthy young patients and has been a near miss on a number of occasions. During that huge thunderstorm in Melbourne a few years ago, these muscles went on a rampage. We have drugs to relax these muscles that are contained in a blue inhaler and used by many people around the world. We know a lot about these muscles and how they work.
“These smooth muscle cells have muscarinic M3 receptors on their membrane. The activation of these receptors by acetylcholine will activate an intracellular G protein, that in turn will activate the phospholipase C pathway, that will end in an increase of intracellular calcium concentrations and therefore contraction of the smooth muscle cell. The muscle contraction will cause the diameter of the bronchus to decrease, therefore increasing its resistance to airflow.”https://en.wikipedia.org/wiki/Bronchoconstriction
Searching the internet, has provided no explanation. So, I will have a shot, excused by unrequited inquisitiveness and my age.
My only real experience of these muscles in action is wheeze, the symptom that is caused by their contraction. The noise is generated by the air we breath going through a narrow tube. If you take a deep breath with your mouth open you will hear a soft noise, if you do it again with your mouth shut, you will get a lot more noise in your nose. The same amount of air will make higher pitched noises as the tube narrows. When the tubes get narrow enough they start to hum and whistle and we can hear a “wheeze”.
Living in London for a decade, I noticed that children wheezed a lot. It was usually with a viral infection and was almost always worse at night. It seemed relatively harmless for most, but a few had difficulty. I treated them with the medications we had available, and noticed that most of them settled down as they got older.
I imagined that the viral infection was causing some swelling of the tubes and narrowing them somewhat. I could explain the wheezes disappearing as children got older because the tubes of their lungs were getting bigger. The deterioration at night, something that was particularly evident with croup, was not so easy to explain.
Traveling piqued my interest in this phenomenon. In 1981, I got off a train at Linkoping in Sweden at 1am in the morning and the temperature was minus 30 degrees. The hairs in my nostrils froze in a snap and I began to wheeze gently for the first time in my life. It didn’t last long as we walked knee deep in powder snow to our friend’s apartment. In the early 90s when we returned from London to live in Darwin our wheezy child stopped wheezing altogether. The air was cleaner and it was a lot warmer, especially at night.
Someone told me that the surface area of our lungs, as an adult, is the size of a tennis court. There is a tiny membrane between our blood, pulsing at 37 degrees, and the air we breathe. How do we possibly stay alive and not die of hypothermia? Especially in Sweden! The solution is that our body heats and moisturises the air between entering our nose and delivering the oxygen to our blood in the tiny sacks at the end of the muscular tubes of our lungs. When we breath hard, we bypass our nose, but we are generally exercising when we do this.
Could these muscles have a role to play in temperature regulation? It seemed quite possible. To warm air, it needs to be in contact with a surface, so the thinner a tube the more likely it is to warm during its passage. But the same amount of air passing through a thin tube would travel faster and have less time to warm. What if we didn’t need so much air? That is the case when we are not exercising, especially when we are asleep. Could this be useful when we are at rest, particularly when we are asleep?
The other effect of reducing the diameter of the tubes is to reduce the volume of the tubes. It is dramatic. If you halve the width of the tube, the amount of air being drawn in is a quarter. So for a small reduction, perhaps to 3/4 width, only half as much air would need to be drawn in through our nose to get the same amount of oxygen to our lungs. This sounds handy, less air, more efficient warming and same oxygen.
It seemed to explain why children get wheezier at night. I was told by my Swedish friends that all Swedish footballers wheeze for the first few minutes of the game in winter. Could this explain exercise induced asthma, where the airways constrict until the person is generating enough heat from exercise? Cold air is a well known trigger to wheeze. A person probably also has some swelling in the lining of the tubes when this happens; allergy or a viral infection. Clearly things go horribly wrong with this mechanism at times, causing severe asthma, but a lot of wheeze can be explained physiologically.
So what is my answer to what has become a rhetorical question?
The muscles around your bronchi protect you from excessive heat loss when you are not exercising, and particularly when you are asleep. You can get by at those times with a lot less air coming into your lungs, and so can conserve heat efficiently. You can survive and sleep in cold weather and cold nights without becoming hypothermic.
Now that sounds like evolution.
Whether or not you like the answer, you can start asking experts the question. I think you will be as bewildered as I am by their inability to answer. You should at least consider why that is so and what it says about our profession? No doubt some of you will search the internet. Please comment if you find the answer out there.
We are living in a moment when there is evident risk to every soul on earth. We worry for the people we love if not for ourselves. My good friend, young and healthy, has just spent a week in hospital and 4 days in intensive care in a personal battle with this virus. It is a depressingly passive experience lying with plastic lines and tubes, depending on oxygen, coughing discretely when others are around. All the while alone, removed from family and friends. Dying was a real possibility. We talked about it on the phone. The virus spread and wreaked havoc in her family. Her three children had both parents in hospital for a few days, all separated and unable to help each other. This was in Australia in a street near you.
Behind the face shields in intensive care, others hovered, their eyes concerned, concentrating but creasing kindly when looking into another. A gloved tap on the arm, and patience with the endless shuffling of bedpans required by a person whose dignity lives only in facing this dark unmeasured threat to their life. It is a kind of love. These caring people matter immensely. To all of us. Time will inevitably take quite a few of us to the edge of this slippery chasm held back by special people decorated only with gowns and gloves and masks. There will be no one else.
Meanwhile the children danced and played with some delight with a visiting aunt who, recovering from the disease, found herself taking care of energised children who were not allowed out. Their young bodies unaffected and one, despite coughing a little like the rest of the family, could not manage to give a positive swab to the persistent masked visitors in gowns. Like other children around the world, they were somehow protected from its power; the younger, the stronger even if afflicted with other conditions. Cryptonite of youth.
It is a wonder of this condition that the deaths that occur mirror almost perfectly the ‘natural’ rates of death in the community. It is for this reason that despite reaching 4,000 deaths in Italy, this virus had not taken a single life under the age of 30. The problem for all of us is that this ‘natural’ curve of human attrition is delivered over a period of 14 days, and the other health problems facing us do not go away. It is a massive impost on health care and society and a disaster facing us all. But it still has this compassionate element – to take we older folk in stark preference. We, who want nothing more than for our children to outlive us.
Health care workers, paramedics and aged care workers are now the farmers in the drought, the police on Saturday night and the firefighters of the summer. We are needed desperately, our attention, our care and compassion. We will be needed for sometime and it could be dangerous. Some are going to catch the virus. It is going to be tough, but it is going to be much tougher for the older members of our professions. The haunting image of an aged care home in Spain, abandoned by carers who may themselves have been sick, must guide our future.
I hear some of my colleagues saying they did not sign up for this, or they have a young family. This is stark. The younger you are, the safer you are. Society needs young health professionals to step forward and engage. Your older colleagues will be there with you but there will be no equality when the virus hits. This is a real test of civility, of commitment to society.
We sit under a cloud of adversity, wondering what will become of us, of our loved ones. Will we come through this, will we all survive? But we are your own. Please take care of us.
Image by Meredith Reardon
I am afraid. My eyes fill a little, mostly at night when I consider my future, our future. I have lived a full life, more focussed on the world around me than my family. My lovely wife has channelled her energy to family and friends. Together we have stood easy in our space, even when apart.
We share some sadness; a fatal crash, estranged loved ones and health has become more fragile. We have a wealth of offspring who pluck our sense of being. We have always loved to live in the villages and spaces we moved in, with little concern for the future. We have had good parents, and siblings who have found their feet. My parents still go about their lives, playing bowls and music as they approach their centenary. My body is likely strong.
I have always anticipated my death a little, and felt vaguely cosy with the tears that I would share with my cherished sons and daughters and those grandchildren who had enjoyed exploring the opaque and cheeky thoughts of elders. Even the regrets that we didn’t do more together, that I didn’t show my love enough, or wasn’t there for some when I should have been, could be resolved in that final reckoning. If I was younger my one love in life would carry me, my family would lift my mood and surround me. Perhaps even some of the people I worked with would join the throng and replay forgotten moments. If I was older, the sheer number of offspring would sustain me and I would go easily.
With the news of this virus and my work amongst potential victims a new contagion has begun to haunt my dreams. It is bleak. What if my wife or I were to catch it and get sick? How would it be to need increasing support and finally, to know one of us could not recover? What then?
Would I die in an expensive shiny intensive care bed, my tubes and vital signs attended by masked and selfless strangers, fading into a world where a distant and sunless window occasionally showed a fleeting familiar face? Or less alone in a ward of others suffocating slowly while sharing our stoic denial or whispered acknowledgement of our very possible future? Perhaps I will be amongst a hoard in a warehouse, given what sustenance the conscripted carers can find. They may be the untidy recovered or people out to make some money to pay off recent debts.
Whatever the stage, whatever the course, we seem deemed to tackle this grim reaper alone. Any peace cut by sirens of the tiny oxygen meters on our fingers or the soon futile wailing of ambulances arriving at the barred doors below. Or the creaking of lines of makeshift beds and gasping neighbours. Alone in a sea of drowning strangers.
That is not what I want for me, for my family or anyone. Let me have a little of my own future, and the people I love. Even one to be with me will make me smile and wonder at what might have been and see inside another’s eyes. I think we can and we should.
Let households be the victim of this wanton infection, strong together within familiar walls. Let resilient children play with their snotty parents, and lovers lie with their fevered friends. They will joke and laugh and cough even as they feel a shared fear of the future. Take out the elders if they wish and test them, returning immediately if they have the little beast within and later if not. The children will wonder what the fuss is about and happiness will replace fear as each recovers, cared for by ones affected not at all or in a little way.
The home while coughing will need help to bring supplies. They will wave together through clean blue windows and call gratefully to the helpful neighbour who turns away. They might go outside in their garden or play music and sing in a balcony choir. Every now and then one will get very sick, and if there is somewhere better to be with a ventilator or new treatment, they can go. They can be visited there and kissed and hugged by their recovered family. And if all fails or they are making a slow recovery, they can go home if they wish to be cherished.
They say things will change with this king of germs. Perhaps it is a chance to discard the notion of health and even being as an individual experience.
Few of us blame the Government for this virus pandemic but on a dreadful day when Australia has twice as many new cases as China (and a 60th of the population) we have to ponder whether we have done enough. Peter Wener in the Atlantic points to a major issues in the USA such as, “… the decision to test too few people, the delay in expanding testing to labs outside the Centers for Disease Control and Prevention, and problems in the supply chain. These mistakes have left us blind and badly behind the curve, and, for a few crucial weeks, they created a false sense of security. What we now know is that the coronavirus silently spread for several weeks, without us being aware of it and while we were doing nothing to stop it. Containment and mitigation efforts could have significantly slowed its spread at an early, critical point, but we frittered away that opportunity.” It sounds a lot like us. Five hundred people getting together at the moment is NOT safe. It is very hard to get tested, and we are being told it may be more difficult.
We have seen TV presenters, film stars and politicians come down with the virus. These people certainly mix with more people than we do day to day, but there are not many of them. So if we extrapolate back from their numbers and determine the rate of infection we will arrive at figures many orders of magnitude above that being reported. Let’s face it:
It is infectious, it is deadly and we need to stop it.
Economic predictions of impact are unlikely to be accurate and should not be listened to. Minimising the spread of the virus will have the most positive economic impact. Short, sharp, severe. Norman Swan has been getting air time to promote more health of the nation approaches. If we stop the growth, we can reopen schools and kindergartens. We can probably keep schools open now for children of emergency workers, health workers and other services that are understaffed.
Most of all we need to consider testing. At the moment we are testing a lot of worried people and groups of people who are in contact with an infected case. If we take a community view rather than an individual view and extreme social distancing is in place, we can check one member of a potentially infected household with symptoms and declare it positive or negative. That household should then be supported at home. Children are likely to be infected very quickly and have no difficulty. The disruption of treating individuals in this situation is massive and quite likely to lead to asymptomatic people thinking they are clear. Household members over 70 in infected households can be removed if asymptomatic and offered alternative accommodation if they do not have the virus after brief quarantine and testing.
Small towns with limited movement in and out can test the first locals with fever, and no travel or contact, as sentinel cases. If the sentinel febrile person is negative then we can assume safely that other fevers in that community are almost certainly negative for a period – perhaps the next seven days. This will be especially important when we add the usual winter viruses to the mix. Obviously any new arrivals with symptoms must be tested.
Regions, such as Central Australia, Cape York and Northern Western Australia (and many others) lend themselves to a regional community approach with community-based testing. The experts on our nation’s 60,000 year old cultures are at grave risk and require extreme measures of preservation. This requires checking all arrivals into the region (which is often one or two roads and an airport or two) and testing any of these who are symptomatic or develop symptoms over the next 14 days. We can tell them when we check them at the regional boundaries. In two weeks they become part of the “viral control” community. We will need sentinel testing in communities, perhaps one or two tests per week. The extraordinary thing in Central Australia is that this will require less than 100 tests a week. If we can “bank” the saved tests, we will be able to carry out contact tracing in the way Singapore has done.
If we are short of tests, lets think about how to use them effectively. It is time for extreme social distancing. Whatever we are putting in place, we need to know where the virus has spread.
I have been moved by the wonderful Toni Morrison, one of my thought mothers, to consider racism from the oppressors point of view. I am a white man, tall, middle class and educated. I work as a doctor of medicine, a powerful role in our country. I have been rewarded with an Order of Australia Medal, probably by people a lot like me (but I do not know). I am ‘in the driving seat’, so to speak, but I have chosen, with the relentless encouragement of Mimi, my ‘specialist in life’, to drive off the track.
I find myself in a position where Aboriginal people employ me. I have two levels of Aboriginal executive above me (who are both women) and the organisation is controlled by an Aboriginal board. I mention this as it is not a common environment for someone like me to work within. It is a very well run organisation, the best I have experienced, very motivating and with great working relationships. It is challenging and I feel good about it.
So Toni has asked for people ‘on the other side’ to describe what racism is. My first piece on this difficult topic was with Waiting for the world to change. I am interested in how the presence of white people changes things in my setting and if this is how institutional racism works. This is not about how redneck we are, or how vile. Rather, how there is an accepted code that gives white people more authority in social settings. There are a couple of subtle ways I have seen this being played out.
Aboriginal people in the Northern Territory use words in everyday discussion that are not so common or acceptable in mainstream culture. I did not notice this when I first came to work in Central Australia but now I do. I have used the ubiquitous terms ‘gammon’ and ‘budju’ for sometime having raised a family in the NT. I now use swear words a lot more at work than I did. I have become reasonably comfortable with the work “cunt”, not when it is used in hate, but in many contexts. Budju is also a word for vagina but is now used by all Territorians to describe very attractive people of both sexes. I am sure this word is acceptable in any setting.
Like my Aboriginal friends and colleagues, I do not say things that might offend when there are too many white fellas about. I wondered about this; about why Aboriginal people change their language when talking to non-Aboriginal people? Why Aboriginal people might stop being Aboriginal when a white person comes close?
Toni Morrison wrote:
“I have always myself felt most alive, most alert, and most sterling among my own people. All of my creative energy comes from there. My stimulation for any artistic effort at all originates there. The compulsion to write, even to be, begins with my consciousness of, experience with, and even my awe of black people and the quality of our lives as lived (not as perceived). And all of my instincts tell me that both as a writer and as a person any total surrender to another culture would destroy me. And the danger is not always from indifference; it is also from acceptance. It is sometimes called the fear of absorption, the horror of cultural embrace. But at the heart of the horror for me is what I know about what the history of the culture that pervades this country have been.”Toni Morrison “Hard, True and Lasting” in A Mouth Full of Blood.
Lukas Williams, the wonderful young change advocate from Gan’na Healing, told me a story about one meeting he attended in a desert community where he was living. He was talking and projecting slides onto a make-do chipboard screen nailed to a post. The large group of local men who attended these meetings were chatting around the fires for warmth. Lukas put up a drawing of Captain Cook landing on Australia’s shore and waited until people grew silent. He started to talk about sovereignty. As the talking slowed to quiet, a large rock came flying through the air and smashed through the screen leaving a dark hole.
There was an immediate hush: uncomfortable silence. A snigger echoed in the far back of the group. Then more, some now laughing. Then, with the explosive urgency of freedom, a massive outburst of laughter filled the air. It rang and rang and echoed off the nearby mountains.
I was waiting to board the plane from a community back to Alice Springs and a young client who I had seen the day before was in the queue. It was great to see she had decided to move on. She had a pillow and a lot of hand luggage as well as her chubby young baby. I offered to carry something and she held out her pillow. I took it. We walked to the plane together sharing a little history and contemplating the new life she was heading towards. She beamed hope and liberation from a very tough time in her life.
On the plane she went to the back, row 23 and I stopped at row 1. I told her I would ask a hostess to bring the pillow down when she was settled in. I put on my headphones and started to listen to John Mayer. Once the door was shut, I asked a lively young, very blonde and Aussie hostess who came from the back of the plane if she could give the pillow to the tall young woman in row 23 with a baby. She looked at me quizzically, turned her head to one side, pursed her lips, but took the pillow. I was puzzled that she hadn’t noticed the striking appearance of the woman, and I wondered if there were a lot of babies in row 23.
She came back and checked, “You mean the dark one?”
“Yes”, I said.
I worried for that young woman from the bush who will be trying to make her way in mainstream Australia. It is tempting to try and understand what was going on in the young hostess’s mind. She was clearly a caring and well intentioned young person. I think we need to own the state of the young hostess’s mind as a nation and realise how far we have to go to educate ourselves and embrace our Indigenous peoples and cultures. When it comes down to it, the complex cultures of our ancient forebears define our space in an increasingly global cultural ‘mash-up’. The alternative is that our collective ignorance defines us.
“Old age isn’t a battle, old age is a massacre!” Philip Roth
Philip Roth’s words are confronting. To continue the metaphor, avoiding the battle is of interest to many and has led the growing acceptance of voluntary euthanasia. Most of us will have long lives and unless we have a heart attack or an aggressive cancer, with the aid of modern medicine, will probably die slowly. Unfortunately, anticipating the impending doom and deciding what to do about it requires retention of our mental faculties and the period leading up to death often strips us of these. Losing our memory often moves us into residential aged care, the frequent site of the massacre.
There is now a Royal Commission into Aged Care, Quality and Safety. It is actually a royal commission into us, our values, and concerns each of us intimately. What is to become of our lives? The commission will have a job to root out “the dark secrets of aged care” (AFP headline) and neglect. The rightful distress and indignation of partners and younger relatives will be broadcast. Everyone will want the best, but the best is elusive in a world where others take care of our loved ones. And I am yet to hear a single voice of an aged person over the hanging crowd of concerned others.
Both my parents are alive and living together independently. They drove themselves to Darwin at 93 and 87 to be nearer their great grandchildren. My wife and I were looking at places they could live. I was a little aggrieved that the people showing us around a quite smart aged care ‘resort’ thought we were wanting to move in! I have been lucky that my parents are so capable and independent at their age, but many baby boomers like me have fathers and mothers, brothers, sisters, aunts and friends in residential aged care. Many residents do not know their visitors any more, some do not have any.
I have worked in aged care as a GP all my career. I have been massively impressed with the quality of care residents have received in the Northern Territory in the urban centres and at Mutitjulu community near Uluru. I have vivid memories from this rewarding work. An old toothless woman from Tiwi Islands mumbling “Fire … Fire” impatiently pointing to the floor next to her nursing home bed on an unusually cold Darwin morning. I got her a blanket instead which did not suffice. A Scandinavian man in his 50s with alcohol brain injury greeting me warmly every single time I saw him and taking me aside, asked me as if he had never met me before, “How do I get out of this place?”. Fleeting smiles from groups of silent women hunched over word search puzzles, pens ready. A woman who smoked a cigarette in a single draw every time she got one, eyes crossing as she watched the glowing tobacco approaching her lips and then filling the room with smoke as she exhaled. Ted Egan came to the nursing home one day singing about Roger Jose from Borroloola to a group of residents who knew the man and the song.
Still, some aged care patients require an overwhelming amount of attention. One difficult situation I have dealt with was an old man falling out of his chair every day and often cutting his elbow or his head. I stitched him up a lot. But he walked almost all day, every day, around and around the facility never acknowledging another person, completely blank eyes, yet careful and assertive in his frail mission. He had soft mats around his chair and his bed. He was dressed like a cricketer with ‘exoskeleton’ hip protectors which he tried to take off and a helmet which he always removed. All kitted up he only got tangled and fell more often. He became extremely distressed if he was restrained, even to suture his forehead.
Catching someone who might fall is not possible for most individuals and difficult for most teams. Restraints are distressing and unacceptable in most situations. Falling sometimes leads to major consequences, but we must see it primarily as a consequence of aging and frailty and not a completely preventable event. To put preventing falls first will destroy old people’s lives through restriction. But it is true that we can do a lot of simple things to minimise falls.
A lot of people in my part of the world like to lie on the ground in the sun when it is cool. It looks like neglect to an accreditation team from Canberra. Well intentioned and usually young speech pathologists order ‘mush’ food for residents in case they choke. I choke a little now, my elderly father chokes often and at most meals. This is aging and no reason to punish people with ‘mush’ unless you fancy living forever! Aspiration of food occasionally leads to pneumonia, the ‘night train’ that used to take almost all of us, gently and with dignity. The alternative is dying of nothing, slowly, deeply, agonisingly. Watching rebellious clients assigned to ‘mush’ steal real food from their neighbours at the table appeals to my sense of justice. I have not found an older person who, when asked carefully if they would rather eat the ‘mush’ in front of them or the steak on their neighbour’s plate, choose the mush.
It gets worse; there are PEGs – tubes that are inserted in the stomach so you no longer need to eat. I override prescriptions of mush and have had a stand up argument with a legal guardian who wanted to follow the advice of one speech therapist that the client needed a PEG. Aboriginal patients always pull the PEGs out. When research was (finally) published showing that demented elderly live longer without a PEG than if they have one inserted it was a eureka moment for me. OMG, how good to know that even demented people can give up because they have no reason to live. Eating decent food is everyone’s final dignity.
I have witnessed love for residents in many forms from staff in aged care. Many do not show their affection overtly as it probably feels unacceptable to visitors – but it is inevitable when people spend a lot of time together. It is truly wonderful to see. My preferred “Married at First Sight” partner used to be a palliative care nurse, but now it is an RN on the floor of aged care facilities. Like me, they are not getting any younger. It is not without consequences for them. I have admitted very sick people to hospital who had chosen not to go because the aged-care staff couldn’t cope with another person dying at that time – they were stricken with grief from multiple deaths within a week. It hurts carers deeply, often more deeply than relatives who have already grieved their failing relative.
The opportunity for abuse looms large and requires vigilance. The stories on the news are dreadful. Abuse of aged people is widespread and statistics would suggest that it happens more at home than in aged care facilities. But one person can harm a lot of people in residential care so we have to be very careful. I have never even suspected anyone I have worked with of abuse, or seen any consequence. The only concern I have had over 40 years is relatives wanting their parent to die and not receive simple health care. This is tough to deal with and requires strength.
Nurses are up in arms about staffing ratios and probably with good cause. They need to be listened to but recognise their own interest. Providers have successfully resisted this regulation, probably with some legitimacy in some settings. Running a non-profit service at a remote location is challenging and there will be times when it is inappropriate to close a service because you cannot meet a regulation. The mere bricks and mortar alone provide comfort even without any staff. Dogs defy regulators and warm their sleeping partners. Visitors come and go as do residents.
The Australian nursing federation website states that “Over the last 13 years, chronic under-staffing [in residential aged care] has seen a 400% increase in preventable deaths of elderly Australians in aged care with hundreds dying from falls, choking and suicide.” I am not so sure that these deaths are preventable; perhaps delayed. This Royal Commission will allow society to demand what we want for our loved ones, but we baby boomers have always been willing to draw down credit on the future and make the present better. I think if we do the maths, it will be impossible to pay for the aged care many of us want.
The final straw from my perspective is being asked to record in a resident’s file that they are not for resuscitation. Where are the defibrillators and mobile resuscitation teams? Should we have paramedics on hand? This ‘hospitalises’ aged care and I do not know where you stop if start. The vision of rows of beds with breathing bodies in them, fed through tubes, with temporary or indwelling pacemakers to keep them alive. Such people already exist, through good intention at some point in the past. In a large facility I visited from time to time I noticed one man come daily and sit next to one of these bodies for years. He never smiled or looked at me and I wonder how he suffered. I am grateful, there are no resuscitation facilities in aged care facilities and strongly resist having to note that someone is ‘not for resuscitation’.
Can we embrace death? It is very difficult to grapple with the fact that the timing of our final moment is largely controllable by others. It is not preventable but it can be delayed for many years. My elderly father is quite prepared for it, and often says he is ready, not out of depression but that his life is complete and his body is gradually less than adequate for his young mind in more and more ways. He takes no medication and waits for little set backs to settle themselves; they have done so far. Another close older relative looked me in the eye on a couple of occasions, holding my wrist and seeking to confirm that I would finish him off if he lost his memory. He was serious. He was also wonderfully patient and caring for his wife who developed dementia late in life. If she had asked the same of him I wonder what he would have done.
I am a general practitioner and a long standing proponent of electronic health records but I am going to opt out of the Australian Government’s My Health Record (MyHR). This will, for the first time in history, create health records which are not under the custodianship of health professionals. This will be done without the person’s consent. I consider this be dangerous.
I may opt in when I can see advantage for me, and that will be when it really is MY Health record. I work in a context where many people use and benefit from the shared record. But they understand what is going on and have consented. It was a local thing. Now it is out of control. Literally, out of your hands.
Whose Health Record?
GPs have been keeping reasonably comprehensive individual health records for many years with letters to and from hospitals and specialists, pathology and radiology results, and progress notes – which are the GPs’ reports of the interaction with that person. General Practitioners, with your funding, have generated this resource.
Who sees the value?
As health care has got more complicated this comprehensive record has become more valuable. In view of this, and the fact that patients move and change their GPs, society has legislated that a person should be able to get a copy of their record and give it to their new GP. If that record is electronic (which is almost always the case these days) you would hope that they might be able to receive it over the internet and incorporate it into the new doctor’s software. It may seem unbelievable, but it usually comes on paper! Even when the same software is used by the practices at each end! If not paper then it will be “electronic paper” as a fax, a pdf or html. I received a ‘wodge’ of paper from a nearby GP’s dot matrix printer when I first went into practice nearly 40 years ago. It wouldn’t fit into my folder as the size was not standardised. Despite working to create an international standard health record format (openEHR) that could outlive systems and software, I still get paper and faxes. Never a record we can incorporate into our software.
Is it Accurate or Complete?
There is another change that has taken place: public concern about the accuracy of digital records – health or otherwise. Giving people access to their digital health records is a check and balance on the completeness and accuracy of these records and is helpful if people have concerns (and know how to access them). Patients in some parts of the world can look at their doctor’s records on line – and show them to others. It is rare that they can add to them, but there is increasing interest in co-production of health information between health professionals and the person themselves. This will allow entry of measurements such as blood sugar and blood pressure, logs of exercise and perhaps the fact that they have stopped or not taken prescribed medication or have started a treatment they did not get from a health professional. After all, only people themselves can know what medications they are taking or have stopped.
Ownership or Access?
Ownership of health records, particularly electronic health records, is ambiguous. The simplest axiom is to accept that it is the property of the person who is the subject of that record and the set of authors of that record. The subject of the record (or their guardian) can give access to whoever they want. It has not to this point been the government’s health record in any sense, but MyHR starts to blur that boundary.
In fact, MyHR supposes that the government is a better curator of your health record than your GP or some other provider who is attempting to meet your health interests. In the absence of standardisation, there is always pressure to centralise. Although this is attractive to bureaucrats it is fraught with many problems, most of which we have not yet faced.
Dangers of a Single National Database
“If it is on the internet, you probably need to see it as public at some time in the future”, a speaker at a security conference said to me recently. The ex-foreign Minister, Julie Bishop, said the same thing on Tomorrow Tonight on the ABC last week. Wow, that goes against the grain. Why is MyHR a particular risk?
The larger and the more centralised a data repository, the higher the risk of security breaches. The ransom to unlock a hacked national database is likely to be many millions of dollars so it is very attractive. It is certainly true that a very high level of security is possible for such a monster database but governments will never have the resources that a company like Facebook has to spend on security; and yet 50 million Facebook records were recently hacked. That is twice as many as can possibly be in MyHR. There is an even more important risk to security in health care. Health care is now the biggest employer in most settings involving more than 1.5m people. Your relatives and personal adversaries are likely to work in health care or know someone who does. They are actually insiders – administrative and clinical people who have access. By contrast to MyHR, a GP practice has a very small database largely unknown to an outside agency and it is relatively secure as risks are local and more likely to be known.
Once information is in the national database it will be inordinately more difficult to remove and correct it than when it is only stored locally. We are not known to the government agent on the end of the phone. Inevitably, and many (hundreds? of) times a day, health professionals will write in the wrong person’s record and save it to MyHR. This may sound neglectful, but it is difficult to prevent completely. Once that information is pushed up to the national health record it needs to be removed. The real problem is, it is not in your health record, and someone who doesn’t look at their health record might have the wrong information in theirs for years, or forever.
Problematic entries make it more difficult for people to navigate the health system without prejudice or inappropriate treatment. These problems are very easy to correct locally where the client and clinician are known but very difficult and time consuming when it is anonymous.
Curating Your Health Record
Currently, if you want a mortgage you will usually have to agree to the lender getting information from your GP. Some GPs fall for the lender’s request to forward the entire record; something they do not have the right to do without your explicit consent. I have not had one patient agree, when consulted, to send the entire record to the insurance company. A considered report of key information is what is required. It takes time and responsibility. But the situation may be considerably worse if you have a MyHR. You can understand in the light of this why the government has said earlier this year that it is inevitable that insurance companies will get access to MyHR in the future, as people want to get mortgages. Personal access control will not stop insurance companies legitimately requesting access before providing a loan. GPs currently vet the request and the health record, withholding sensitive and potentially confidential information that bears no relation to health risk in the future while providing information that allows assessment of risk pertinent to the insurer’s decision. This will include data such as cancer diagnoses, blood pressures, weights, smoking status, waist circumference and other measures that are associated with shorter life expectancy. In the case of MyHR, who will consider the interests of the patient?
Who Benefits from a Shared Health Record?
There is little evidence to date that a national health record repository will make any major difference to care although it has been particularly important in Aboriginal health in the Northern Territory. Having access to accurate information about people as they move about the health system is likely to be beneficial, particularly if you are mobile. But it has to be trusted and complete in relevant aspects to be useful. While many people who are mobile or have major illness will benefit from the sharing of health information, it is unlikely to make a major difference to standards of care in most instances as this information is already available from the client or in correspondence. Very up-to-date prescribing will probably have some utility at this scale.
So how can it be argued that consent is not required? I am very happy for people to opt in once they believe they will benefit and I am sure there are many people who will. The risk of privacy breaches, of inaccurate or incorrect information being recorded and the lack of curation will be balanced for some by their health providers having access to information at the point of care around the country. But in general, the risks of publishing our health information demand our consent; it must not be assumed.
Further, government agencies will undoubtedly have access for what are deemed to be ‘honorable purposes’ by governments of the day. Again, I think we should have to consent to specific secondary purposes, understand the need for completeness of information, and the potential benefits to us or others from the involvement in some way.
Is making participation in the national health record repository involuntary the best solution? The shift to “Opt out” means you get one if you take no action. That is not respecting a person as a citizen.
Why Would I Want To Opt Out?
Being involved as Citizens and not Consumers
We are now consumers and we consume healthcare at an alarming rate. Never mind the over-treatment, the over-diagnosis – the more we get the better. That works politically up to a point…happy consumers. But there are consequences to this consumption apart from the waste. If we have been prescribed antidepressants for a normal reaction to the loss of a loved one, or had an ECG for chest pain that shows some ambiguous changes, or have a high blood pressure reading because we are frightened and full of adrenaline, the content of our record damns us in the future. It does so unnecessarily, as we actually have no health problem, but in a way we cannot control. Consider the possible consequences. Higher insurance premiums perhaps, more unnecessary tests because the next doctor is anxious or a persistent shadow of mental illness or suicide risk and difficulty getting travel insurance? The problem with our health information is that it is a threat to our autonomy. If people have certain information about us they can legitimately act on that basis, and defend it legally. To be citizens and partake in society as autonomous individuals we must guard our health information closely.
What Happens with Dr. Shonky, Stays with Dr Shonky.
When an incorrect record is created in a shonky ’emergency clinic’ it stays there. A record stating that we had ‘pneumonia requiring a major course of potent antibiotics for 14 days because it did not respond to the first course‘ rather than a more likely diagnosis in a fit person of ‘a viral lower respiratory infection‘ can have a major influence in future. But at least no one else knows. The more mobile you are, the more you see different practitioners, the more you find free and easily available services , the more your MyHR will be promoted as ‘valuable’ and the more full of noise it will become. There is little or no value in this information, especially when compared to a comprehensive letter from a specialist general practitioner or physician, whom you know well, providing information relevant to the problem you want solved to another practitioner you are going to see.
Less educated people will be dealt the worst hand here and stories will slowly get to the press – wrong diagnoses, wrong treatment and occasional major harm.
The Special Case of Children
I am particularly concerned about children. Parents have persuaded government that they deserve the right to access to their children’s MyHR. This sounds reasonable. It is very rarely that children will benefit from having a shared record as they are usually robust, but I do accept that there are complex paediatric situations where parents are likely to opt in and they and their child will benefit.
However, in the new nightmare, children will ALL have a record. Now, in this dystopian future, consider the plight of the adolescent who is seeking contraception to prevent pregnancy. After the age of 14, adolescents will be able to turn off parental access to their health record. But will they even be aware of the existence of this thing? Will Dr Shonky understand the implications of adding certain information to MyHR? Most troubling is that the adolescent will not be able to turn off access without parents being aware of this. How many Adverse Childhood Events are going to arise because of the MyHR? The world is not the middle class playing field that people working for government in Canberra experience. Some children will suffer.
Is there a Utopian Future?
I would like to offer some examples of health records that I think could meet our needs, and by using the word ‘our’ I mean citizens and clinicians.
For the young, IT savvy person who is most concerned about privacy, I would propose an individual health record on their phone and backed up onto the cloud maintained by a regulated cooperative agency. The health record would be composed of transactions with different health providers, potentially in different countries and even in different languages. This does require standardised export from GP and hospital systems and a means of access to a person’s health record but this is quite possible. There are technologies now available that can be used to validate such records, enabling the person to have a fully validated health record despite no one else having a complete copy of it.
The next level of control for citizens is where the health record is held by a number of providers in a range of settings. Some information is likely to be aggregated in one place by their provider of choice, but this service would be paid for and the person able to move some or all of the record to another provider. This model would involve EhrBanks, trusted aggregators and qualified custodians of health information. These agencies would hold some of the information and links to other records on other systems. These links can access and be able to pull down all the source records if required.
The EhrBank agencies would ideally be non-profit and allow individuals to consent to ‘secondary’ use of their health information for specific purposes. A representative group of clients could agree to use of data for research or other proven benefits.
In this future, I would see a national health record, but only for people moving long distances and not having providers that were grouped geographically or cooperatively. You might just have your allergies and your prescriptions on the national health record if that was of benefit.
I believe that Australians should opt out of MyHR if:
1) they believe that unknown people having access to their health information is more of a concern than health professionals not having access to it
2) their health record holds information that could damage them in the future
2) they are under 18 (involving parents opting out their children at birth)
For those who want to opt out, it might be time to consider an open platform that allows a range of solutions to meet people’s needs, while ensuring control. There are some budding examples.
Declaration of compound interests
I need to declare a number of interests. First, I am a GP and work for Central Australian Aboriginal Congress in Alice Springs, which has expressed the Board's and management's specific concerns via their umbrella organisations AMSANT and NACCHO. I have not sought in anyway to influence these and am writing this from an entirely personal perspective. Second, I am a director of the international openEHR Foundation which offers a collaborative technological specification as a solution in this domain. openEHR does not prescribe the actual implementation model, rather it specifies how to make this work in any number of ways. It is being used in the NT and also in a couple of PHNs around Australia. This technology supports and unlimited range of solutions while preserving the meaning of the health information. Third, I am a shareholder and director of Ocean Informatics which provides this openEHR based software. I have not been part of the national debate for some time as I have been disillusioned by the lack of progress. I did write the original scoping paper for the national electronic health record and have chaired and participated in various national and international standards efforts.