I was at a meeting in Alice Springs about 30 years ago in a session led by Ada Parry and Peter Thomsen, two pioneer Aboriginal cultural educators, who set a task for two large groups of doctors in a big meeting room. One group was told they were on an island which was about to be visited by a powerful nation. They had to erect a monument to show their own prowess and demonstrate the importance of their leader. The other group were told of the poverty and lack of education of the island people and were to go to the island to help. They were told to mingle and find out what the population really thought was the best thing for them to offer. My colleagues present will remember the insight we all gained into the difficulties that arise when people negotiate from different positions.
The resonance with Australia’s current experience with ‘the voice to parliament’ is extraordinary. This is not a new experience and one of which every Indigenous leader is acutely aware and it is potentially devastating.
All Australians can understand the “Uluru statement from the heart” – it is a strong request for recognition in the constitution and finishes with “In 1967 we were counted, in 2017 we seek to be heard.” It was the result of a massive national effort to consult with all Australian First Nations’ leaders and communities culminating in a meeting at Uluru and the creation of this historical document. It was delivered to the Prime Minister, Malcolm Turnbull, with pomp and grandeur, but it was not accepted using excuses that still echo today. Mr Turnbull is now advocating for Aboriginal and Torres Strait Islanders to be heard, demonstrating that it takes time for all of us to really appreciate the importance of this small generous step. Changing our minds is always required for progress.
I grew up in a small country town in South Australia with Tony Dodd and Bobby Wanganeen in my class and their brothers and sisters in my school. Two proud families from a South Australian mission given passes to live in our town and work for local industry. I was 12 when these families were accepted as citizens and they moved on, back to their country. My ancestors settled the fertile land in regions of South Australia and my grandmother remembered only one older Aboriginal man working in the region during the second world war. My father, soon to be 100, remembers as a child, a man escaping to Adelaide on horseback to establish an alibi after killing an Aboriginal man. That’s it – no history, no story, no place in the region. But I can still sit on the abundant middens along the limestone coast, find flint knives and imagine the Booandik people feasting on cockles around big fires. Most First Nations’ people of that region died before Federation, without being counted, or heard.
Constitutional change is necessary to guarantee that our Parliament will consider the impact of its new laws on our First Nations people. Why? Because this sovereign group will forever be a minority in their own land.
We can be more generous to the people who have a connection with this country going back millennia. We can see people who live in remote Australia or our islands in the north, not as pioneers but as keeping what is uniquely Australian alive. We can see the imposition of law to stop the cattle being killed as understandable from a British perspective but complex and foreign to open range hunters. We can see the idea that a person can come with some wooden stakes and bits of paper that gives them the right to dig up country and blow up ancient monuments as strange and somehow unfair. Farmers are now experiencing this with fracking and are duly concerned. This ‘voice’ we are voting for (or against), might actually be good for all Australians who have established non-mining interests in rural and remote parts of our country. In the most urbanised country in the world, this voice may also speak for them.
This vote for ‘the voice’ has strong international interest in the press around the world. Our country is under scrutiny. It is seen as a sign of our inclusiveness, our maturity as a nation. I have never had anyone speak out that they voted against the 1967 referendum and opponents have quietly disappeared. This vote will also be seen as a turning point in our nation’s history – towards the future or away from it. It is about inclusion, safety and well-being. It is simply a recognition of First Nations people in our constitution and a requirement that their views be heard by Parliament.
We all have a choice on the 14th October 2023, approaching 250yrs since Federation. If you are uncertain about how you will vote, I hope that you might consider a generous response. One for the history of all our nations.
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.”
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.
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.
But how?
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.
Medicine at the Deep End 