What is important to the aged, their families and their communities
Our most cruel failure in how we treat [the aged] is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one's story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters in everyone's lives.
Source: Atul Gawande M.D., Being Mortal (2014)
Being Mortal, a 2014 book by a retired surgeon and author of several books in the USA, has been widely praised and debated because of its analysis of the problems and experiences in managing the last years of life. I have not yet read it but it is clear that it will be a useful resource for those interested in the welfare of the elderly and how to care for them.
The quote above is from the beginning of the Californian report "A Shattered System" that I analysed on the previous web page. The report uses it to say "that a person's age or physical or cognitive impairment should not portend a sedentary life of isolation in or out of an institution" and that "People prefer to remain at home and avoid institutionalisation to every extent possible". They don't seem to address these issues further but I may have missed it.
A good review of the book by a Professor of Medicine in California indicates that "Gawande's indictment of modern medicine's approach to aging and dying is pointed and withering". He is critical of many aspects of the medical care in aged care and of the way the aged are handled and issues addressed. There is also an interview with the author on that website.
Atul Gawande visits Australia
Atul Gawande visited Australia in June 2015 and the transcripts of his interview with Norman Swan on ABC Radio National are available.
Gawande challenged the idea that our biggest concern was death itself making the point that people had other concerns and each person had different priorities about what was important to them as their time diminished. But almost universally, it was their ability to control their lives and decide what they wanted that was important to them.
- -(Gawande) - he argues, medicine and indeed the aged care industry are often serving those of us at the end of our lives, pretty poorly.
Courage was the concept of being willing to face the facts (of terminal illness) as they were, and that is courage in and of itself, and to have prudence in knowing how to manage that - - - But then there's this added layer to it, which is a willingness to act, to take action in the face of that knowledge. You can still be paralysed by knowing what the truth is, can you act on it?
I describe a philosopher named Josiah Royce who said we all live for something larger than ourselves, that we are even willing to sacrifice our life for a greater cause. And he called that cause your loyalty.
- - as we face the losses that come with sickness or with frailty, we fear as much, if not more, what happens to us along the way.
The first surprise was that people as they get older, their health declines, their abilities decline, and they get happier. The average 75-year-old is happier than the average 35-year-old
And what I gradually realised was that people have priorities besides living longer. And talking to experts who were really good at these situations, what they simply did was ask people the key questions which we don't ask in medicine; what matters to you besides just living longer? - - - they have priorities besides just their health and living longer,
And so one of the fundamental roles of medicine is to be able to help people be clear about what their priorities are and then help them achieve them. - - - What are your priorities besides living longer, and let's make sure we don't sacrifice those.
Gawande looks at nursing homes critically and does not see them as being home. They are about protection and safety - and home is not like that.
We will all likely come to this place where we have a hard time living alone and need services or need to be even in a nursing home. And the striking thing is that nursing homes look more and more like hospitals. They are built around a nursing station, the rules are all around safety. And safety is assumed to be the most important thing that you would want for your ageing parent.
Laura Carstensen describes people getting happier as they age, having lower anxiety, less depression. The exception to that is when they become institutionalised, and they feel like they are in prison. And the most common complaint, what you hear them say over and over is, 'When do I get to go home?' And you realise, what is home? And home is ultimately a place where you get to make the choices, where you get to make the choices about the risks you want to take.
I describe visiting some radically redesigned places. They are built not around a nursing station but around a kitchen. And in the kitchen is a refrigerator, and in the refrigerator you can go and take food any time you want. And that's a radical concept in nursing homes. You mean, you could let a diabetic go take a soda? Yes. That's what a home is. You get to make bad choices. But that's a very difficult concept in these settings, but I describe places where those kind of choices are allowed.
Gawande describes the change that occurred in a nursing home when a colleage made radical changes to what was done there and gave people some responsibility by giving them pets:
And he (colleague) would see the people slumped over in their wheelchairs and just feel like there is no life here. He called it the three plagues of boredom, loneliness and helplessness. And so he decided to inject the place with life by bringing animals in.
Exactly, and it was total chaos, but even very severely disabled Alzheimer's patients tuned in to their birds. And when they were not being fed properly would raise a stink about it. And you saw that people wanted to walk their dog. Suddenly they were given responsibility, they had purpose, they had something to care for. Antipsychotic medications went down and survival went up
But that wasn't the crucial thing. The most crucial thing was simply that they were not lonely. They had a purpose, and they had a reason for existing. And that is what he was bringing in and starting to make happen, in his haphazard crazy way. - - - they have assumed that safety was the only thing that matters in people's lives, and it isn't.
In talking about health care he echoes two themes of these web pages and priorities for the proposed hub, namely the imbalance of power for consumers who need to be able to decide what they want and the importance of total transparency illustrating this with what happened when the measured performance of doctors was made public in the USA.
What's the role of consumers? We have a very inefficient market, and whenever you've got an inefficient market there is information asymmetry between the provider and the person who is buying the service or getting the service, and in no market is it bigger than in healthcare. So what's the role of the consumer in pulling the right care towards themselves that's rational?
But the fascinating thing was that the transparency about those ratings drove the bottom end of those ratings to leave the business. Their colleagues stopped referring. - - And so that group of people either improved or else got out. - - I think making our results known is partly the power of the consumer, there's going to be some effect from that. But I also think it's the power of your colleagues.
Then there is the problem of knowledge. As you can see from the many links on this page, none of us can adequately grasp and assess all of the information that is needed to make good judgements. We now have to learn to work in teams. The days of the all knowing prima donna are over. We have to share knowledge with one another, discuss and work together. Below, he is talking about medicine:
The volume of knowledge and the volume of skill has exceeded the capabilities of any one individual to know it all and do it all. And so it's become a team sport. We all have pieces of care, even the general practitioner only has a piece of the care.
I think fundamentally important in medical school and in your training beyond is learning to be effective as groups of people, as teams.
Gawande comes back to the idea of smaller groups of people doing things that are homely. Innovation is not going to come from big companies running large profit making institutions but from groups of people interested in aged care working with and talking to older people. Together they might do something that suits people who can have very different ideas about what they want to do during the last part of their lives.
There are a number of innovative and interesting experiments going on in the USA, Europe and Australia, a few of which I mention on these web pages. They are the product of people deciding what they want and then seeing if they can find a way to do that. The proposed hub creates a place where this can happen and be supported.
Even just the idea of making homes where it's a smaller group of people that are living together in a homelike environment is radically transformative, as I'm sure you are being able to show with your Alzheimer's patients. I think as you are also likely to be experiencing, it's not the government that is going to be driving this, it's going to be people who have taken care of people going through this experience. It is not a disease to be wished on anybody, but there is terrible care or care that is at constant loggerheads with a person going through this kind of condition, and there is care that is in tune. And it is amazing to see the difference.
I think more and more we are beginning to ask is this a place that really supports people's ability to have as much purpose and engagement in their life as possible. And that's what you are creating and that is an amazing thing.
Atul Gawande on culture change in medicine: ABC Radio National (June 2015)
- Atul Gawande on healthcare reform (Part 1)- ABC Radio National, 15 Jun 2015
- Atul Gawande on culture change in medicine (Part 2) - ABC Radio National, 22 Jun 2015
Preschools in Nursing Homes
The colocation of preschool centres within nursing homes has been another remarkable success, involving the seniors in educating and working with the kids. A documentary “Present Perfect” has been made about a pre-school/childcare centre in Seattle USA.
The children and the residents work and play together in a wide variety of activities that include art, dancing, storytelling, and more.
Shooting this film and embedding myself in the nursing home environment also allowed me to see with new eyes just how generationally segregated we’ve become as a society. And getting to know so many of the amazing residents of the Mount really highlighted the tremendous loss this is for us all.
Source: Seattle’s Preschool Inside A Nursing Home Is Proving Friendship And Learning Know No Age Posted in: Education 6 July 2015
Below is another report with video clips of both parts of the documentary:
- What happens when you mix a nursing home with childcare? Sunday Night at 7, Yahoo news
Holland is a country that many describe as innovative and providing really good care. There is a good video of the way a "Dementia Village" operates on the link below.
- Malcolm, can Australia become a truly inspired, innovative leader in aged care? Aged Care Concerns, 23 Sep 2015
An article from the Arts Health Institute describes the “staggeringly high rates of loneliness in the elderly” and promotes engagement through learning and the role that art can play in doing this.
- Creative ideas in ageing: the old loneliness problem Australian Ageing Agenda 14 Jan 2015
The future is here: A local community owned nursing home in Mildura is experimenting with virtual reality tours where residents wearing goggles can immerse themselves in exotic locations and experiences.
- How virtual reality is helping aged care residents connect. ABC Local 22 Sep 2015
Approaches to dying: It you want to explore different attitudes to palliative care and dying there are several videos of talks at the link below.
Learning from nursing home residents (Added Dec 2015):
A psychotherapist working in a US nursing home, which is probably much like many of ours, writes an insightful article about the things that matter to those at the end of their lives and facing death. There is much to learn from this article, especially for those who work with the elderly. While she does not say this explicitly I thought the most important is the benefits of entering into, understanding and learning from the life of the other person - breaking the habit of seeing everything from our own point of view - the habit of seeing others who are different in some way as an object to be looked at and managed rather than a subject to engage with, learn from and build social capital with by allowing them to "be".
We might try to relate this to what those from the Centre for Welfare Reform (see page Developments in Social thought) on the opposite side of the Atlantic are saying about real citizenship and their attempts reforming social services by acknowledging the citizenship of groups and individuals who are different or disadvantaged and other - granting them the right to be in control of their lives and participate with you in society as citizens.
What working in a nursing home taught me about life, death, and America’s cultural values Vox Media Inc 2 Dec 2015
Ageism: Internalising community perceptions - Caring and Rights
Karen Hitchcock: Dr Karen Hitchcock (physician and writer) expressed some interesting thoughts on ageing and ageism in an interview with Leigh Sales on a recent airing of the ABC 7.30 Report. She pointed out that the elderly learn to see themselves as others see them - and at present this is as a burden. This is an important point to make and it extends into everyday activities as well. The aged are taught to get out of the way and leave life to the young. I also share Hitchcock's reservations about advanced care directives which don't tell us how citizens will feel and what they will want at a later very different time in their lives.
What I hear is that the fact of our ageing population is an overwhelmingly negative development. - - - they've completely internalised this message that they're a burden.
But I think that saying that every single citizen in Australia should have an advanced care directive is dangerous
I think we need to start from an ethical perspective of what we want our community to be, and then from that, imagine our society and then find ways to create it and fund it, rather than starting from an economic position.
Source: Elderly 'have internalised' message they're a burden on society, says physician Karen Hitchcock ABC 7.30 Report, 12 Mar 2015
I like everything Dr Hitchcock says because the proposed aged care hub is intended to create a context where we can discuss what we want our societry to be, imagine it and then engage with the economy from a position of strength to see what needs to be done to accomplish that.
The publication "Quarterly Essay" published Karen Kitchcock's essay Dear Life - on caring for the elderly in its March 2015 edition. It is a down to earth expose of ageism, ageing and dying in 21st century Australia. It tells it as it is in all its horror, misery, fear and humanity. She debunks the illusions that govern our society's often idealised view of ageing and death - and the policies that govern aged care. She debunks the myth of demedicalising aged care and death, but also does not hide our failures and the way we respond to the stresses involved.
Those of us who have been part of this culture of ageism are now experiencing it ourselves and not liking it much! We can relate to what Hitchcock says. There is nothing more irritating than a kindly overweight unfit young person calling you "dearie" with a paternalistic comment about leaving the grandchildren behind when you are engaged in some physical or outdoor activity that they are incapable of - admiring you for being out of place!. This strips you of your identity and your place in the world.
Stephen Romei, Literary Editor for The Australian considers this essay should be required reading for every Australian and I agree, but especially for all those providing aged care or making policy.
Examples: There was an astonishing example of this recently when a blind retired doctor was taken to a public hospital from her nursing home with fractures of her spine and diarrhoea. Her nursing home was unable to cope. She was issued with an eviction notice read out to her in a public ward because she was blind.
This is a red flag incident illustrating how the bureaucratic mind of manager’s works in pursuit of the managements objectives - in this case beds. It gives some idea of the pressures that are put on doctors to discharge patients that nursing homes are no longer staffed to care for but who don’t need acute care. I can remember occasions in my hospital where medical stsff stepped in to prevent managers from themselves. At that time doctors had the power to intercede effectively! This is the sort of situation the proposed community aged care hub would be contacted about and would act.
Elizabeth Rogers was handed her eviction notice from the emergency department at 11pm last Sunday, when hospital staff gave her written warning that they would be unable to accommodate her once an ambulance was available to take her away.
"It was read out to her in a crowded ward, which must have been quite humiliating."
"I would like you to be aware that hospitals have the authority to insist that you vacate the premises under the Enclosed Lands Act 1901 No. 33," the letter said.
Mrs Elizabeth Rogers, a retired doctor, was admitted to the emergency department last Friday night after falling out of bed at her low-care nursing home in Waverley.
Source: Hospital threatens elderly patient with eviction after she overstays welcome in emergency Sydney Morning Herald Aug 16, 2015
She deteriorated in the nursing home and was later admitted to another hospital where she died. She would have had the training and the experience to know what was needed to care for her.
(Added Dec 2015) How common is this?: A journalist writing for the Medical Observer mentioned this to a friend who ‘stopped in her tracks and said: “That’s what happened to my mother in Canberra just last week! The hospital sent her home to a cold, empty house, no supplies, no food, all alone. It’s freezing in Canberra. She’s 89. How can they do that?”.
- Discharge of elderly in need of urgent review Medical Observer Sept 24, 2015
Bed blockers: There have been several articles related to 'bed blockers'. An academic critical of aged care was critical when she gave evidence to a New South Wales Upper House inquiry:
"Using the term 'bed blockers' implies that they're a nuisance, that they're blocking beds for other people," she said.
"It's not incumbent on the older person to feel they shouldn't be there."
Source: Aged care expert critical at 'bed blockers' reference for older people ABC News, 14 Aug 2015
A common problem in the country (which this academic has also been critical about) is that the local hospital is short of beds after cost cutting pressures have forced the closure of beds, and the local nursing homes have no space. Management puts pressure on and justifications are found to transfer the unfortunate patient to a nursing home hundreds of miles away. There he dies a lonely death far from relatives and friends.
In the Goondawindi example below, the patient returned home from the local hospital to get his affairs sorted out and sell everything only to be refused re-admission when he returned. He was sent off to a distant nursing home. A doctor in the hospital tried to get him back but he died alone before that could happen.
A GOONDIWINDI legend has been “shafted from his home town” according to his grieving family.
Ted’s family thought it would be a matter of putting Ted back in hospital until a room became available at Kaloma.
However they were told, as Ted was not an “acute patient” they could not admit him.
Source: State aged care not good enough Goondiwindi Argus, 12 Aug 2015
This seems to be worse than the third world countries where we sometimes placed stretchers in corners or corridors, and mattresses on the floor to accommodate those in need of care? I can’t remember ever turning people who needed care away.
One family member corresponding with Aged Care Crisis indicated that a private hospital was threatening to raise the fee to several hundred dollars if they did not accept the first home with a vacancy even if it was not on the list they had selected.
(Added Dec 2015) Lobbying for change: The shortage of rural services, particularly in aged care is worrying and allied health professionals are lobbying government. They indicate that "There is a waiting list for aged care beds, so people generally of that particular community, of what 3,500, 4,000 people, may have to move out of that community, they may have to go to Cobram for argument's sake," This problem of elderly people having to move into a far away nursing home far from family and friends is an unacceptable but recurrent problem.
- Allied health professionals to lobby for more Federal Government attention as summit begins ABC News 9 Oct 2015
The lobbying seems to be having some impact. Press reports indicate that the minister, Susan Ley, is working on a plan “to finance rural and remote residential aged care”. She has indicated publicly that “residential care was the next area for reform in the aged care sector” admitting that the governments market based approach, which she claimed worked in cities, “did not work in rural and remote areas”.
- Rural and remote aged care in Ley's sights Courier Mail 28 Oct 2015
My experience of Ageism: I agree with almost everything that Hitchcock is saying based on my own experience working in hospitals and treating aged people. But I was more privileged in that when I came to Australia I worked in a public hospital run by the Sisters of Mercy. The nuns were still in charge. There was a genuine humanitarian mission. We treated large numbers of elderly patients and it was not as ageist as Hitchcock describes in the hospitals she worked in.
As surgeons we learned to assess patients on their physical and recent (not current) mental state and knew how well the aged often did after even major surgery. We were proud of our success in doing this. Those surviving into their 90s were tough survivors and often returned to useful lives after surgery.
When things went wrong they went very wrong and those were the patients that the critics saw when they visited the wards or the ICU. Colleagues and the suffering families asked why we had put them through all this and sometimes were understandably angry questioning our judgement. Those who did well were out of bed the next day and back home with their families within days - which is why we did it but they were not the visible ones.
There were of course many difficult decisions and we did not suggest an operation if the risks were unacceptable or the quality of life did not justify this. You had to balance the odds of benefit against the risks of failure. As Hitchcock illustrates so well with her examples, every case is different and there are no fixed rules. It comes down to judgement and working closely with the patient and family to try to get the best outcome for that person - trying to enter their lives and understand them, discussing issues and possible consequences with them. As fallible humans we sometimes misjudged or made mistakes and had to accept that. What mattered was that you confronted failure and learned from it.
Melanie Joosten: Melanie Joosten has also on 9th March 2015 published an article on The right to be old on the Right Now (Human Rights in Australia) website. It is a useful criticism and well worth reading.
Dr Julie Landvogt, an educationalist writing in The Age What makes a life? Its more than just breathing on 30 March 2015. She describes the misery and degradation her mother experienced staying alive in a nursing home when life was no longer worth living. This is the other side of what Karen Hitchcock was describing. Yet perhaps they are not really that far apart. Worth considering and confronting.
The Workplace: Australian Ageing Agenda has a recent article on ageism in the workplace.
- - 27 per cent of Australians aged 50 and over reported experiencing some form of age discrimination in the workplace during the past two years, rising to 32 per cent for those aged 60 to 64.
Significantly, 33 per cent of people who had been discriminated against gave up looking for work as a result.
Mr O’Neill said National Seniors’ own research had similarly shown that those on lower incomes were particularly affected but too often they had little or no access to opportunities for retraining and upskilling.
Source: Age discrimination in the workplace rife: report Australian Ageing Agenda, 24 Apr 2015
Debate about ageism: Ageism is alive and well in the community and there was recently anger at robust journalism's use of words to scaremonger and stigmatise. This is the way the Australian Financial Review described the ageing baby boomers. In keeping with government policy of privatising everything, the new severe behaviour response teams that will handle people displaying very severe and extreme behaviours are being put out to tender.
- - a surge of feral geriatrics with severe and often violent behaviour problems stemming from dementia. - - wave of people moving into retirement homes expands, a proportion are turning out to be a menace to themselves and other retirement home inmates – mad, bad and dangerous to know.
The Australian government is inviting applications to deliver severe behaviour response teams (SBRTs) services under the Ageing and Service Improvement Program. It will be running, initially, as a nationally consistent operation, from September, 2015 to June 30, 2016.
When an old lady in a wheelchair is suddenly taken for a wild chase down a corridor by a severe behaviour dementia patient who has seized the handles and hurtled off at velocity, despite their own physical limitations, care staff are suddenly faced with a critical response situation requiring instant action.
Yet this is the sort of reality facing an increasing proportion of the retirement care industry, as dementia totals swell.
Source: Dementia troublemakers problem in retirement homes Australian Financial Review, 6 Jun 2015
Graeme Samuel CEO of Alzheimer's Australia gave a measured response Dementia sufferers not mad or bad saying "It is very disappointing when media outlets and others in the community propagate the view that a large number of people with dementia are 'mad, bad and dangerous to know' and that 'I want to live in a community that cares about people with dementia, not one that berates and denigrates them if their behaviour is not what we expect'."
Australian Ageing Agenda provided a forum in an article Anger over Fin Review’s ‘feral’ dementia story where many of those who treated dementia expressed their outrage using words like "scurrilous", "horrified" and "incredibly irresponsible". A complaint had been made to the Australian Press Council.
The Australian Centre for Independent Journalism defended the article. The Australian Financial Review offered explanations, but did not withdraw or apologise. It has hidden the article behind a pay wall.
HammondCare is the one organisation that get things right and often does the right thing. Instead of attacking - it engaged, met with the journalist, persuaded him of the error of his ways and changed the way he saw things.
I might add that most of us were concerned about this article because at heart, it failed to appreciate that people living with dementia are people, not a problem somewhere in the distance. That it’s personal, extremely personal for many, including my own family. We might be advised, after initial outrage has settled, to reflect that same regard to this journalist, in his mid-seventies, who is not a bad person, and who may yet contribute positively to the issues dear to our hearts.
Source: Response from HammondCare - Australian Ageing Agenda, 25 Jun 2015
A Civil Society and its very opposite: Elder Abuse
We can consider society as comprising three major components, politics, the market and civic society. Robert Kuttner has written about this and in the 1990's argued strongly about the erosion of civic society and politics by the market. He wrote about our social selves. His book "The Economic Illusion, Everything For Sale: The Virtues and Limits of Markets" I believe warned of many of the issues we are now facing but I have not read it yet! Some of these ideas are drawn together in a paper he wrote in 1996, The Limits of Markets in "The American Prospect", a US journal he edits.
So we can also consider ourselves as two selves. There is our personal self with its focus on building our own lives and our own place in the world. Modern society with its commercial focus, and the intrusion of aggressive advertising into our world view (how we understand the world and our place in it), directs a disproportionate amount of our attention to our personal self. The selfie creates an image of what the personal self is all about - me and what I look like and do in this world.
A consequence is that we have less time and less interest in our social selves. This self embraces our concerns for society and our role in maintaining and supporting it. The idea of a common good, the welfare of others, and a commitment to the values and norms of society are all part of it. While we may pay service to this and acknowledge its importance we simply don't have the time and enough space in our lives to support and involve ourselves in it.
These two selves are frequently in conflict and it is our social selves that constrain us from doing antisocial things and drive us to help others and contribute. In my view this shift in the balance between the two selves results in a loss of social capital with profound consequences for civil society.
Social capital refers to the collective value of all "social networks" and the inclinations that arise from these networks to do things for each other ["norms of reciprocity"].
Source: The Better Together group accessed 29 May 2015
Our own Eva Cox has also written about a Civil Society and Social Capital:
The dominant ideas of competition and deregulation of markets, and the attacks on the redistributive roles of government are not only dysfunctional but positively dangerous. They are part of an oversimplified dogma which can destroy a truly civil society in pursuit of the cashed-up individual.
Source: A truly civil society - By Eva Cox, The 1995 Boyer Lectures
I like to look at all this in the light of the increased focus on our personal selves as a driving force in our market society. This can cause us to be blind to the interests of others and to respond aggressively rather than empathically to the burden that others place on us. We forget that we too are reliant on the goodwill of others. This legitimising of self-interest immunises us against the pangs of conscience when we do exploit the weakness of others.
As an outsider looking in, elder abuse seems to fit in here somewhere. It represents something that is the very opposite of what we expect in a civil society - a society rich in social capital.
Elder Abuse has become a widespread and recognised problem in aged care. In what we call "primitive cultures", the aged were venerated and respected for their wisdom and experience. People listened to them and when they died some cultures gave them supernatural status with the ability to intercede on their descendent's behalf.
But rapid change places pressures on the wisdom of the past which is no longer seen as relevant to the present and may not be. The aged have lost value and status in the community. The pressures and immediacy of modern life provide less opportunity for thoughtful reflection on the lessons of the past. I think it is useful to look at Elder Abuse within the context of the all of the ideas above because it is the very opposite of what we expect in a truly civil society. The pressures of a "look at me" life cause frustration when dealing with others and blinds us to their interests and wellbeing.
Material of interest:
The ACT Council of the Aged are so concerned about elder abuse in the ACT that they are carrying out a wide-reaching new study into the issue.
COTA believe existing figures are understated and that a "huge" amount of Canberra's elderly are the subject of financial abuse in particular.
The new study comes as assaults in Queensland nursing homes, where residents were bashed, starved and deprived of pain-relief, prompted calls for a state-wide review.
"There is a lot of shame around it, people don't like to call it abuse, and people don't know where the line is [drawn] between looking after your parent and being controlling," she said.
As a result, the incidence of abuse in Canberra could be much higher, she said.
"On a regular basis we would get calls which relate to elder abuse. From their experiences and what they are saying about abuse in the community, it seems like it is a really important issue."
Source: ACT elder abuse figures "underestimated" - more studies needed says Council of the Aged - Brisbane Times, 12 May 2015
Elder abuse occurs in nursing homes, in families, within community groups and in the marketplace where their vulnerability is an invitation to those focused on their own advantage. Just have grey hair and look a little shaky and confused when you go looking for competitive quotes and you will see it. There are multiple types of elder abuse and they are addressed in the links below.
Here is a striking example of financial abuse.
An accountant has been sentenced to more than seven years in jail for "plundering" the estate of an 88-year-old West Australian woman with dementia, during an extended period of criminality in which he stole more than $1.6 million.
Robert Charles Atherley was Mary Taylor Eva's accountant, the executor of her estate, her legal guardian, and had power of attorney over her affairs.
"She was a particularly vulnerable victim," Judge Stone said. He said the offending "constituted a gross abuse of trust".
"The beneficiaries [of the estate] were vulnerable in that they were not aware you were plundering from the estate." He said Atherley "systematically" stole the money over a long period of time,
Source: Accountant jailed for 'plundering' $1.6 million from elderly dementia sufferer ABC News, 27 May 2015
An article Speak up to protect elderly suffering abuse in silence in the Sunshine Coast Daily on 15 June 2015 describes the extent of senior abuse on the Sunshine coast. It describes the problem for people who do not want to incriminate loved ones and or publicise problems in the family. Advocates urge people to speak up.
Lawyers to whom the elderly turn for help and protection can be accused of taking their slice of the pie.
- Legal Services Commissioner alleges Gold Coast solicitor Robin Slipper engaged in unsatisfactory professional conduct - The Sunday Mail, 7 Jun 2015
Elder abuse takes many forms. It is now widely recognised and there is a vast amount of information available publicly. Aged Care Crisis has two web pages.
The government My Aged Care website has links to contact phone help lines in each state
There are multiple government and community group publications. A quick search found the following:
- Elder Abuse on Wikipedia
- Elder abuse prevention and response guidelines for action 2012–14 Victoria Department of Health
- Elder Abuse Prevention Unit example
- Elder Abuse and Neglect - a US community Helpguide following a tragedy
- What You Can Do To Curb Elder Financial Abuse Forbes article, 27 May 2015
More and more recent Elder Abuse developments lAdded Dec 2015)
NSW Elder Abuse Inquiry
- INQUIRY INTO ELDER ABUSE IN NSW Media Release Sept 2, 2015
- Submissions close 12 Feb 2016 and submissions already made are published here
- Elder abuse inquiry welcome (CPSA Sept 2, 2015): In September the NSW Senate announced an enquiry into elder abuse. Apparently there had been over 1000 calls to a hotline established in 2013 and “The Australian Institute of Criminology estimates that up to 50,000 people aged 65 or over in NSW had experienced some form of abuse or neglect, including financial, physical and psychological abuse.”
- The South Australian Community Visitors Scheme in its submission (Number 16) to the senate enquiry into Violence, abuse and neglect against people with disability in institutional and residential settings indicated that Community or Official Visitor programs to all institutions and residential facilities were an important means to detect violence, abuse and neglect of people with a disability. Visitors build trusting relationships not only with residents but with staff who disclose matters of concern. This is one of the roles of the proposed aged care community hub which would be as well or even better placed to do this in aged care.
- Rapid rise in elderly falling foul of greedy relatives: lawyers (The Australian Oct 5, 2015 - NB Paywall): According to the Australian “Lawyers and health workers are reporting an alarming increase in financial abuse of the elderly as tough economic times, rising dementia cases and “an age of entitlement” are creating targets of older Australians.
- Call to criminalise financial abuse of elderly as woman reveals how mother's $2m home was sold by son (ABC News 19 Nov 2015): There are growing calls to criminalise financial and other forms of elder abuse
- Age Discrimination Commissioner Susan Ryan seeks George Brandis' help on elder abuse (Sydney Morning Herald 9 Nov 2015): Elder abuse is another part of aged care where there are many examples but where data are in short supply. The WHO estimates that 1 in 10 elderly persons experiences abuse each month but there is little data for Australia. Migrants are a particular problem. Aged Care Commissioner, Susan Ryan, is asking the attorney general to fund a large study. She also suggests a national financial abuse hot line and a national register for powers of attorney. One comment about the article in the comments box suggests that the government have been the biggest abuser of the elderly in parliamentary history!
- Dentist and former deputy mayor Andrew Istephan admits assaulting elderly patients (Sydney Morning Herald Sept 2, 2015)
- Families of dodgy former Sydney dentist's victims speak out (A Current Affair Sept 28, 2015): “Former Hurstville deputy mayor and dentist Andrew Istephan engaged in the "deliberate, callous and systematic exploitation" of elderly people by performing unnecessary surgery for extra money”. It was alleged that he did this without any anaesthesia.
Physical and Sexual Abuse
- One alleged physical or sexual assault per nursing home: Government aged care report (CPSA Nov 28, 2014): Combined Pensioners and Supwerannuants (CPSA) reviewed the figures released in the annual government report on the complaints scheme. 2,353 of 3903 complaints made were about alleged physical (1983), sexual (333) or both (37) forms of assaults in nursing homes (note that resident on resident assault was not included). Only 3.3% of all complaints resulted in compliance action being taken. South Australia, the state where there is a trial of reduced oversight and accreditation visits had the highest number of complaints per resident- a ratio of 1.4. CPSA questioned whether the scheme was adequately staffed to deal with this. What we don’t know is how many of the 370 cases were reported to the press. In the publicly reported instances the cases have usually been reported to the police and too often this has been done by staff rather than management or family.
- Employee charged with sexual assault of nursing home resident - Padstow Heights (NSW Police Press Release)
- Aged care worker accused of raping an intellectually disabled woman, 72, who has 'the mind of a three-year-old' is granted bail (Daily Mail in UK): A case of alleged sexual abuse by a long term employee in South Haven Aged Care Facility operated by Christadelphian Aged Care, a not for profit religious organisation was reported in the two links above. It is interesting because the evidence is very circumstantial. The accused was only linked to the crime by being seen near the victim on CCTV - hardly enough to charge someone. Nothing in the reports indicate why he was thought to have raped the victim. It is not clear who saw the rape but it was other staff who made the accusation. The victim was severely mentally impaired. If someone did have evidence or see it happen then why did it take so long to report that the rape could it not be confirmed with forensic evidence. The reports are pretty definite given the lack of disclosed evidence. In other cases there has been delay because of conflict between nurses and management about reporting to the police. Hopefully we will learn more but that can sometimes take years.
Canada seems to be well ahead of Australia. It has recognised this as a problem that has arisen in our communities and that it requires community action and change to address it. Large community organisations are focusing on the problem of abuse of citizens in their local communities and are doing something about both addressing and preventing it. An interesting example well worth looking at is the British Columbia Association of Community Response Networks, a community project to address adult abuse and neglect. It is building local community activities across the state.
Transparency is essential
Whether it is government, business, church, Freedom of information or any other institution, there are always pressures to hide information and not disclose it. The best intensions are steadily eroded and attempts to be transparent are eroded. The importance of transparency has been revealed over and over again. The proposed aged care hub is intended to institutionalise transparency and prevent it from being eroded by putting those who need to know in charge of data collection and dissemination.
The National Patient Safety Foundation Lucian Leape Institute in the USA places strong emphasis on total transparency in health care as well as a number of other important parameters. Aged care is way behind and there is much to learn. When we actually start collecting information it must be available. You Can’t Understand Something You Hide.
The article below described a case where a patient died from a medical error and instead of covering it up the doctors told the family exactly what had happened and reported it to the press so leading to an open and honest investigation which revealed a widespread risk in hospitals of something which could be prevented from happening again. But this is the exception rather than the rule.
It is not only health and aged care that covers up. It happens in politics,in the corporate world, in the church and in everyday life. Its how we instinctively behave. The article goes on to look at the whole issue of transparency. It links to a large amount of additional material. Aged care has been characterised by near total opacity. Total transparency is absolutely essential if we are to do something about aged care. This, the proposed aged care community hub would insist on.
But that’s not how it ended. The clinical team who cared for Mrs. McClinton conducted a thorough investigation and explained the error to her bereaved family. The leaders of the organisation revealed the error in an email to the entire staff, emphasizing the flawed system and vowing to learn from the event.
The press covered the story, and the medical community in other hospitals realized that the same conditions that led to Mrs. McClinton’s death existed at their health facilities, putting additional patients at risk. As a result of the public accounting of the case, other hospitals changed their procedures, even before The Joint Commission added a National Patient Safety Goal related to labeling of medications on and off the sterile field in perioperative and procedural settings.
In a 2009 paper, the Institute members called transparency “the most important single attribute of a culture of safety.” The latest report from the Institute, Shining a Light: Safer Health Care Through Transparency, defines transparency as “the free, uninhibited flow of information that is open to the scrutiny of others.” That is an expansive definition, and reaching such a state is an ambitious goal.
Real change will be realized only when clinicians are transparent with patients and with their peers, and when organizations are transparent with each other and with the public.
Barriers to transparency are ingrained in health care culture. Among them are fears about conflict, disclosure, and potential negative effects on reputation and, subsequently, finances. Strong leadership is required to overcome these barriers and create a culture of safety.
The University of Michigan Health System has pioneered a program of disclosure of medical error and apology to patients and families. Fears that full disclosure would increase malpractice claims and result in larger settlements have proven to be unfounded, as both have in fact decreased. Beyond the financial rewards, the commitment to openness makes it more likely that staff will report errors or near misses –enabling the organization to proactively address potential safety issues.
Source: You Can’t Understand Something You Hide: Transparency As A Path To Improve Patient Safety Health Affairs, 22 June 2015
The National Patient Safety Foundation Lucian Leape Institute website sets out the core requirements for a transparently safe system. The proposed hub would be focused on them all.
transforming concepts that require system-level attention and action. The concepts identified to date are
- Medical education reform
- Active consumer engagement in all aspects of health care
- Transparency as a practiced value in everything we do
- Integration of care within and across health care delivery systems
- Restoration of joy and meaning in work and ensuring the safety of the health care workforc
Source: NPSF Lucian Leape Institute web page accessed 26 June 2015
Here are some more articles:
Transparency—the free, uninhibited sharing of information—is probably the most important single attribute of a culture of safety. In complex, tightly coupled systems like healthcare, transparency is a precondition to safety. Its absence inhibits learning from mistakes, distorts collegiality and erodes patient trust.
Source: SourceTransforming healthcare: a safety imperative British Medical Journal Qual Saf Health Care 2009;18:424-428 doi:10.1136/qshc.2009.036954
A selection of Issues in Aged Care
Dementia is one of the most difficult issues in aged care. Not only are sufferers difficult to care for but they are also vulnerable and unable to help themselves. The College of General Practice has an excellent resource on the medical care of older persons in nursing homes including dementia. Many of the issues in care relate to the management of people with dementia so we do need to understand it.
Dementia is a progressive decline in general cognitive function, with normal consciousness and attention.84 There is impairment of memory, abstract thinking, judgment, verbal fluency and the ability to perform complex tasks. It is associated with behavioural and psychological changes, and impairment of social and physical functioning. Behavioural and psychological symptoms of dementia (BPSD) include psychosis, depression, agitation, aggression and disinhibition in the later stages of the illness.
The prevalence of dementia increases with age, from about 3.4% at 70-74 years to 20% at 85-89 years, and 40% at 95 years or over.
Source: Dementia in The Silver Book Royal Australian College of General Practice (website accessed May 2015)
Professor June Andrews from Scotland has written a book directed at the public The One Stop Guide to Dementia. She spoke at a meeting in New Zealand in May 2015 and gave a long interview on NZ radio which is well worth listening to (link below).
- Dementia by Prof June Andrews Audio on Radio New Zealand 23 May 2015
Too often when we talk about dementia we talk about sufferers as if they have no voice, yet many are still well aware of what is happening to them and able to contribute to the debate and to what happens to them. Dr Susan Koch spoke about the balance between risk and quality of life that we all have to confront as we age.
- - (Dr Susan Koch from RDNS Institute) - - calling for a national conversation on the issue through an open discussion that puts people with dementia at the centre of talks with majority representation, rather than token inclusion. ------------ She said people were taking risks all the time, especially those living in their own homes, but action was often taken once this impacted on health professionals or home visitors who felt uncomfortable.
“Someone who is at high risk of falling and sustaining an injury, do you put them in cotton wool for five years not allowing them to do anything spontaneous or do you let them live their life knowing that there is a risk?” Source: Better balance of rights and risk in dementia care needed: expert Australian Ageing Agenda 10 April 2015
In the UK there is currently a drive for a better understanding of dementia and the government is strongly supporting it. The Guardian organised an expert panel discussion. A few extracts below ---
People with dementia and their carers know what matters to them and must be involved in the way services are designed and commissioned.
Every day we hear about the struggle people with dementia have getting a timely diagnosis. - - - many people with dementia are also at their wits end with the lack of timely and quality dementia care in their area.
We need to have a dementia care system that focuses on the experiences of people who live with dementia. With dementia, too often people are left to navigate an incredibly complex system alone.
Source: 'There is still a shocking level of ignorance regarding dementia' The Guardian 29 May 2015
Transcript of the discussion: How can health and care integration help people living with dementia?
The following articles explore different facets of the debate about dementia
Less than a third of OECD countries collect quality care indicators systematically and even fewer countries make this information available or grade the performance of service providers based on weighted quality indicators
Source: Dementia: The global scene and lessons for Australia Presented by Glenn Rees AM to Catholic Health Australia National Conference, Canberra, Australia, 24 Aug 2015
"The single biggest issue that was identified in the consultation was around stigma," Ms Parker said.
"The people we spoke to said it affects the way people engage with them and even allow them to participate in community life."
Source: 'Stigma' associated with dementia number one concern for people living with the disease ABC News Sept 3, 2015
At 30 June 2014, 83 per cent of people in permanent care needed a high level of care-compared with 76 per cent in 2008. More than half (52 per cent) of all people in permanent residential aged care had a diagnosis of dementia,” Boland said.
Source: Half of all Permanent Aged Care Patients Have Dementia Probono, 8 Sep 2015
This week, it is Dementia Awareness Week in the UK, and I have been publishing daily blogs on the Dementia Alliance International website as part of our contribution to it, in part because we have a lot of UK members, and also to highlight some of the presentations at ADI2015.
---------- We will no longer accept anything about us without us, and will continue to speak up for this basic human right until it becomes a reality.
" We want change; we want improved care, respect, our basic human rights and autonomy; we want full inclusion and a voice; most importantly, we are here to stay
Source: Advocacy and activism for people with dementia (kateswaffer.com)
So those with early dementia like Kate Swaffer are insisting that they have real input into this debate.
The difficulty for those with Dementia in our cities is discussed in the following article in the magazine Dementia Daily: Community engagement key for dementia-friendly communities 22 Sep 2015
More information: Dementia
Many Dementia Reports added below in December 2015
- Are our older Australians slipping through the health care gaps? (Alzheimers Australia 5 Nov 2015): Alzheimer’s Australia comment critically on the BEACH review of Primary Care which does not say too much about Dementia. They note that while more over 65s have a GP and attend regularly, the time it takes to diagnose Alzheimers remains on average 3 years. They ask whether people with dementia are falling through the cracks and makes 5 recommendations.
- Peak urges nutrition training for home care workers (Australian Ageing Agenda 10 Dec 2015): Alzheimers Australia is worried that Dementia sufferers receiving home care under CDC are at risk of malnutrition. Additional effort and training is required. It has “released a discussion paper,Dementia and Nutrition in the Home”
- Do nurses have sufficient training: Dementia sufferers can be much more difficult to manage than other residents and additional specialised interpersonal skills are required. The quality and number of staff are critical issues. Australian Ageing Agenda ran a survey on the front page of its web site during 2015 (accessed October) asking “Do you think graduate nurses have sufficient knowledge on dementia?”. 90% of 161 readers said no, 6% thought they would learn on the job and only 4% thought it was adequately covered in undergraduate courses.
- Hit and miss: duplication, unmet need across dementia programs (Australian Ageing Agenda 5 Nov 2015): A government review done by KPMG has found that there is duplication across services but at the same time unmet need. It recommends consolidation. The minister indicates that she will act on this. But we do need to remember that firms like KPMG make their money out of government surveys so usually tell them what they want to hear (like consolidation) - often a way of reducing funding and this is hinted at. It is therefore interesting that a comment by a stakeholder who attended the KPMG consultations is highly critical of the report and also accuses Alzheimers Australia of failing to use the large amount of government money it gets to benefit consumers.
- ‘Critical mass approach’ to staff training advocated (Australian Ageing Agenda 11 Nov 2015): A paper talks about the difficulties in training staff to provide person centred care where “frontline staff are still illness focused, task focussed and inflexible” It asserts that it is best done using a “critical mass approach” where individuals play out the role of the recipient and experience what they are subjected to.
- Government’s mental health reforms criticised for ignoring seniors (Australian Ageing Agenda 27 Nov 2015): Psychologists and psychiatrists complained bitterly about the new mental health services that will be commissioned through the new Primary Health Networks because seniors and particularly those in residential care had been ignored. There was “no mention of seniors, older people or aged care, despite longstanding calls for improved access to mental health services for older people, particularly residents”. This was even though “more than half of permanent aged care residents have symptoms of depression”. Medicare does not cover mental illness in aged care facilities where “three-quarters of residents have a mental illness” COTA criticised this omission claiming it reflected the ageism in our society.
- Mobile teams will improve knowledge and care of BPSD: Judd (Australian Ageing Agenda 23 Oct 2015): Severely demented patients can become angry, disruptive and violent. A previous plan to supplement nursing homes with these very difficult residents by providing extra funding was exploited by the nursing homes and had to be stopped. To address this problem teams of suitably skilled people are now on standby to go out to nursing homes to help. The claim is that “Severe Behaviour Response Teams — - will improve providers’ capacity to care for seniors with dementia more than the former dementia supplement ever did”.
- The terrible curse of Young Onset Dementia (St Kilda News May 22, 2014): Those who have the the most difficulty in coping in a nursing home are those with early onset dementia. There are simply no facilities for them and these demented patients who are still physically active find themselves in old age dementia units that cater for sedentary octogenarians twenty or more years older than they are.
- Stuck in God's waiting room (ABC Radio National 12 June 2015): But there is one group that is even worse off and that is young people with disabilities who end up in nursing homes because there is no other suitable place for them. They find themselves isolated from people their age and surrounded by frail elderly, half of them with dementia, and by frequent death.
Problems with too many drugs
Drugs that keep us alive and drugs that allow us to live more comfortably or just drugs that keep us quiet when we become a nuisance for others or when nursing homes are so understaffed that they can't cope. All drugs have side effects but when do they outweigh the benefits.
There are many articles in the medical literature that show that often the elderly end up taking too many drugs and their combined effects and interactions may outweigh their benefits. Often no one has properly reviewed their drugs when adding a new one and not stopped those that are no longer needed.
The article quoted below asks whether side effects of medication, when we take too many, impacts quality of life and does more harm than good. It looks at the incidence of poly-pharmacy but the question is not answered.
On the one hand the figures might suggest that patients admitted to medical wards in hospitals are already getting medically appropriate treatment as few changes were made. On the other hand the doctors may have been less cognisant of the side effects than the pharmacists who wrote the paper, which is sometimes the case.
Polypharmacy is common among older people admitted to general medical units of Australian hospitals, with no clinically meaningful change to the number or classification (symptom control, prevention or both) of drugs made by treating physicians.
Whether such prescribing in this patient group enhances quality of life and improves longevity or whether it imposes iatrogenic harm and lowers quality of life needs to be established
Source: Polypharmacy among inpatients aged 70 years or older in Australia Med J Aust 2015; 202 (7): 373-377
Overuse of psychotropic drugs in nursing homes
Chemical restraint: The excessive use of psychotropic drugs as a means of restraint in nursing homes has been an ongoing problem. These drugs have a large number of complications in the elderly and these increase morbidity and mortality.
It is now widely recognised that most cases of dementia can be far better managed using a different approach to the patients and other forms of therapy. But care of troublesome dementia requires more and better trained staff, something that increases costs and reduces profits. As a consequence their overuse continues and there has been so much publicity that the nursing homes must know it.
The case of a family member who had complained to staff and tried to persuade them to cut down on these drugs is illustrative of the strategies adopted by some nursing homes. Not only did they not discuss this with the knowledgeable wife when they started drugs, but the nursing home refused to tell her what drugs the resident was on. She had to submit an FOI request to find out what drugs had been given:
Meanwhile, John continued to be dosed with antipsychotics. Despite having power of attorney over John's affairs, it took Mrs Sypkens two months to get the nursing home to stop dosing him. Only after lodging a Freedom of Information request could she later find out exactly what he had been given.
Source: Dementia treatment: Stemming the tide of loss - Sydney Morning Herald, 17 May 2015
The issue of chemical restraint has been in the media for several years.
Geriatrician and Clinical Pharmacologist Associate Professor Sarah Hilmer and NHMRC Early Career Fellow Dr Danijela Gnjidic, said that a shift to non-pharmacological management of behavioural and psychological symptoms of dementia in aged care facilities was urgent.
The authors said that while research supports use of psychotropics (antipsychotics, hypnotics, anxiolytics and antidepressants) in some clinical scenarios, they are being used “too often and for too long” at high doses in residential aged care with harmful effects.
Source: Urgent call to act on psychotropic drugs - Australian Ageing Agenda, 23 Jul 2013
Alzheimers funded a study to assess the extent of the problem. It also looked at physical restraint. This was reported in 2014:
A new study produced by Alzheimer's Australia suggests up to 80 per cent of dementia patients in aged care facilities are being treated with psychotropic drugs.
- - only one in five dementia patients receive any benefit
Lateline previously revealed that up to 6,000 elderly Australians could be dying prematurely each year because of the misuse of psychotropic drugs in aged care facilities.
Source: Up to 80 per cent of dementia patients in aged care facilities restrained with psychotropic drugs: report ABC News 26 March 2014
The prevalence of physical restraint in aged care facilities varies and evidence suggests prevalence ranges from 12–49%
Physical restraints can have a range of adverse psychological and physical effects.
There are some situations in which it may be appropriate to use physical restraint for a short period of time, but clinical guidelines indicate that physical restraints should always be an intervention of last resort
It is best practice to ensure that consultation takes place with the carer and/or legal representative prior to the decision to apply restraint.
Source: The use of restraints and psychotropic medications in people with dementia A report for Alzheimer's Australia, Mar 2014
There have been several more recent articles that are worth looking at:
Public subsidies for antipsychotic medications used in nursing homes should be restricted to curb the “outrage” of harmful overprescribing of the powerful drugs to elderly Australians, experts say.
This prescribing was “in nearly all cases inappropriate, harmful (and) generating reduced quality of life and increased mortality” and was done because it made it “just easier” to manage residents.
A quarter of those in aged-care facilities, equating to an estimated 50,000 people, were on antipsychotics, “mostly to try to control their behaviour”.
A quarter of those in aged-care facilities, equating to an estimated 50,000 people, were on antipsychotics, “mostly to try to control their behaviour”.
Source: Call to curb PBS subsidies for antipsychotics for aged The Australian, 4 Aug 2015 (Note Paywall)
"This shows that powerful drugs are not the only way to care for people with dementia. While they may be an appropriate treatment in some cases, they are not an inevitable form of treatment for everyone."
Providing residential care grounded in a deep understanding of the individual located in environments that minimised confusion and agitation vastly reduced the need for antipsychotics, Dr Judd said.
Source: Helping aged care to ditch drug habit by Stephen Judd from Hammondcare
(Added Dec 2015) Australian Doctor reports a study of 150 aged care facilities which revealed that 25% of residents were taking sedative drugs and half had not had their medication reviewed. Medication review reduced the use of these drugs by over 40%. There was resistance to reducing usage from staff families and GP’s. Some were “too busy dealing with accreditation paperwork to take on any quality improvement initiatives”.
- Review curbs sedative overuse in nursing homes Australian Doctor 6 Nov 2015
More information: Chemical Restraints
Dental care / Oral health in nursing homes
Poor dental hygiene is a contributor to general ill healthy and increased mortality. There has been a problem for years and nothing has been done about it.
An Adelaide survey has provided a damning snapshot into the dental health of nursing home residents. The report by the University of Adelaide shows that people in nursing homes suffer oral diseases at a rate many times higher than older people living in the general community, and bad dental health is a problem that can lead to further health complications such as pneumonia, as Nance Haxton reports from Adelaide.
Source: Study finds bad dental health in nursing homes ABC - The World Today, 7 Jul 2004
Nursing aids are not trained to care for people's mouths and their teeth. It is time consuming and they do not have the time, nor do managers support this. Trials to train those providing care in nursing homes have not been successful.
DENTAL experts are divided over a government plan to train a staff member from each of Australia's 2830 aged-care homes in dental hygiene, with some describing it as ineffectual and others as a step in the right direction.
- - - "has to be put in the basket of token gestures, really".
"They need fully trained dental hygienists and dentists to work as teams, coming into nursing homes to deliver dental care.
Source: Aged-care dental plan under fire - The Australian, 7 Mar 2009
Dentists and dental hygienists interested in the area have been pressing for staff positions at nursing homes and for better training to meet the needs of the sector. A recent study in Western Australia is representative.
The University of Western Australia-led study says while experts have promoted addressing geriatrics within dental training since the 1970s, little has been done to put recommendations into practice.
“It is time for academics, geriatric dental professional and policy makers to advocate for a world where social justice is valued, and promote geriatric dentistry education,” Dr Slack-Smith says.
Source: Dentist attention needed for geriatric patients Science Network, Western Australia, 18 April 2015
Educational institutions (with others) have an obligation to lead change, yet there appears to be little formal recognition in Australian dental curricula of the need to develop quality education and research programmes in geriatric dentistry
Source: Geriatric dentistry, teaching and future directions. Aust Dent J. 2015 Mar;60 Suppl 1:125-30
There is much that can be done by carers to prevent dental decay. Aged Care Crisis has articles about this elsewhere: Dental health of residents in aged care facilities - Aged Care Crisis, 11 Mar 2009
Cross infection in nursing homes has always been a problem because of the need to balance quality of life against the risk of infection. This has become more of a problem as antibiotic resistant bacteria have spread into nursing homes. This survey examines gaps in infection control and vaccination in aged care facilities and in accreditation requirements. There is an article on Australian Ageing Agenda and an audio on Aged Care Insight website.
- Survey highlights gaps in infection control practice and policy Australian Ageing Agenda 8 April 2015
- Facilities lack proper infection control: study AUDIO of Interview with author Australian Aged Care Insight 16 April 2015
And another study of MRSA spread has just come out in the USA:
Healthcare workers frequently contaminate their gloves and gowns during every day care of nursing homes residents with drug resistant Staphylococcus aureus or MRSA, according to a new study. The findings were published online today in Infection Control & Hospital Epidemiology, the journal of the Society for Healthcare Epidemiology of America.
"One in four nursing home residents harbor MRSA in some settings. We know that healthcare workers serve as a vector for MRSA transmission from one resident to another in settings such as nursing homes," said Mary-Claire Roghmann, M.D., lead author of the study.
Source: Healthcare workers serve as vector for MRSA transmission in nursing home settings - News Medical News, 29 May 2016
Infection control, when an outbreak of a serious infection occurs, inevitably causes upsets for residents and family. But if you want to make it look bad you just cover it up and don't tell people what is happening as BUPA has done. Were the proposed hub in place its staff would be very much involved and know what had happened, whether there had been an unacceptable breakdown in hygeine, and what was being done to control it. It would not be done behind closed doors.
An aged care home on the New South Wales north coast has re-opened after being in lockdown for three weeks following an outbreak of gastroenteritis. - - - had not allowed family members to visit relatives
Bupa today issued a statement that said a number of residents were being treated for gastroenteritis - -
Source: Ballina aged care home re-opened after three-week lockdown amid gastro outbreak ABC News 29 May 2015
Bupa will not reveal how many residents are ill,- - -. Many other families have reported their anguish over not being able to visit their elderly relatives.
Source: Gastro outbreak causes lockdown - Northern Star News, 29 May 2015
Family disputes and difficult relatives
When you look at the reports on failures in care, it is readily apparent that nursing home staff's skills in managing discussions about failures in care and dealing with unhappy customers are often very poor. Attempts to cover up instead of being open, honest and apologetic when there are problems only make matters much worse for them.
It is particularly difficult when family relations break down and each of the children wants to be in charge. There are legal issues here that need to be addressed by the family so that these situations don't develop. There is advice on the Aged Care Crisis website.
Here is a quote from an article about the problems with family and especially when families disagree. It is from an elderlaw lawyer advising nursing homes how to deal with these problems and keep themselves out of trouble by careful record keeping.
Ms Field also stressed the need for “objective documentation” whenever issues arose. She warned against using emotional or judgement language when documenting grievances or incidents. “Think about who writes in the notes, when they write and why, and think about where the notes could end up. Remember, you cannot go back and change them.”
Source: Heading the warning bells on aggressive relatives - Australian Ageing Agenda, 22 April 2015
A recent study by Benetas working with FMC Mediation and Counselling Victoria to be presented to the Australian Association of Gerontology shows the benefits of mediation in resolving issues and the advantages over law suits. The impression I get though is that the focus was as much on disputes between family members as about unhappiness with the care given.
There are problems in mediation. particularly if the mediation is arranged by the company and not independently as has happened in the USA where it has been made a condition of admission to the facility. The other problem is that the resident’s family is unlikely to have access to nursing home documents or to statements under oath from staff so may not know what has actually happened to their family member. This is important when mediating and resolving complaints.
Mediation would be a key function of the proposed community aged care hub, but this hub would also be responsible for investigating problems. Its staff would have access to nursing home documents and have spoken to staff. Mediation would be conducted with full access to all information and ideally with the actual staff involved as well. The hub would be there to protect them if the facility attempted to penalise them for speaking honestly. Residents and their families would not be disadvantage by mediating.
- Mediation program helping to resolve conflicts in aged care, trial shows Australian Ageing Agenda 9 Oct 2015
Whether at home or in a nursing home loneliness is a problem for all those without close family contacts as well as for those whose families are far away or just too busy.
Elder orphans: Singles who never get married or whose relationships have broken up form a significant proportion of the ageing baby boomers. They have no family to care for them and become increasingly isolated and homeless. There is no one to help them at home and they more readily end in nursing homes where no one comes to visit them. The USA has done a study.
There are unprecedented numbers of childless and unmarried individuals among the aging Baby Boomer population, leading researchers to coin the new phrase ‘elder orphans’. According to U.S. Census data, about one-third of Americans aged 45 to 63 are single, a 50% increase from 1980, and nearly 19% of women aged 40 to 44 have no children, compared to 10% in 1980. The trend is causing concern among geriatricians and palliative care physicians who say that many are at risk of becoming ‘elder orphans’ with little support available to them as they age. Sadly, many will have no known family member or designated person to act on their behalf.
This is a population that can utilize expensive healthcare resources because they don't have the ability to access community resources while they're well but alone.
My generation was one of the first that elected not to have children… I see a lot of sadness and regret on the part of the elderly people who decided not to have children. A lot of fear. 'How are we going to get care? Is there going to be anyone with me at the end of life?’”
Source: The rise of the ‘elder orphan’The rise of the ‘elder orphan’ MercatorNet.com, 22 June 2015
In Australia some nursing homes are worried about this and asking for volunteers to come and talk to residents.
Moving into a nursing home can be a difficult time for many elderly people, particularly if they have no one to visit them. It is an issue facing many residents at the Waroona Multipurpose Centre in Charleville, where staff members are now asking locals to volunteer their time to keep lonely residents company.
Nurse unit manager Jeanelle Everitt says it is easy to spot the difference between residents who receive regular visitors and those who do not
For the residents that don't have family or regular contact with family they really haven't got much in their rooms at all, which is a shame."
"It's very important for them to have that social contact because, as you know, when people come into aged care they do go through a whole grieving process - the loss of their home, the loss of their social contacts," she said.
Source: Charleville nursing home residents desperate for visitorsCharleville nursing home residents desperate for visitors ABC local, 22 June 2015
The Gold Coast
While home care services are available on the Coast, moving into a nursing home doesn’t have to be the end of the world.
I was saddened to walk past room after room of lonely souls.
While it's easy to get caught up on the hectic merry-go-round of life, I think it's important to spend time with our friends and family whose lives are no longer spinning around.
While their bodies have slowed they are still the same people on the inside.
And they would love nothing more than your company.
Source: SOAPBOX: Elderly don't need pity, but company would be nice Sunshine Coast Daily, 16 Apr 2015
People like to be near their relatives and friends, but this may not be possible when the local nursing home is full. Maree Bernoth from Charles Sturt university has looked at the problem:
A SHORTAGE of aged care services in Wagga is making it more traumatic for older people who are forced to travel away to access facilities, research has revealed.
Findings released in a report by Charles Sturt University researchers has found loneliness and desperation often results in older people who have to move away from their community.
“We need to provide support for carers to assist keeping people at home,” she said, adding that an initiative that upskilled carers could be one possible solution.
Source: Study reveals care gap ‘hurting’ aged - Daily Advertiser, 11 Apr 2012
Information about medical conditions and their management in nursing homes
The College of General Practitioners has an excellent "Silverbook" about disease and care in nursing homes. You can view it online or download it as a pdf.
Australian medical opinion
Australian doctors working in aged care
Professor Ian Maddocks: On 7th April 2014 the Medical Journal of Australia (MJA) published a letter from Professor Ian Maddocks in which he responded to a paper about the misuse of psychotrophic drugs in aged care facilities. In the letter Maddocks pointed out that this was only one of many problems that needed attention in aged care facilities.
He listed problems in assessment of new residents, poor availability of medical personnel, overdependence on locum services, inappropriate transfers to hospitals, poor support for staff and inadequate palliative care. Too often residents were not getting the medical care they needed.
He urged a system in which general practitioners with a special interest and with additional training would be based in aged care facilities. Here they would provide medical care and support other health care staff providing aged care here and in the community. This was already working well in the Netherlands. This paper is available on the internet but access is limited to subscribers to the MJA.
Maddocks developed these ideas further in his July paper “Big challenge requires bold thinking“ proposing an aged care community hub. In part 1 of Solving Aged Care I strongly supported this and used his proposals as a basis on which to build a proposal for a wider aged care community hub which addresses additional issues.
Aged care is "broken" a 7th April 2014 article by Cate Swannell addresses the issue of Primary Health care for residents of aged-care facilities which is described as fundamentally broken. The article and subsequent brisk discussion addresses the issue as to whether the aged are best cared for by their own doctor who knows all their background, or by a more dedicated and trained doctor working and available in the facility.
It quotes Maddocks and also Professor Whitehead president of the Australian and New Zealand Society of Geriatric Medicine, who support dedicated and trained doctors based in the facilities because most busy GP’s simply cannot find the time and patients fall between the cracks. Patients often move to a facility away from their local GP and its not working.
The president of the College of GPs preferred a system where the patients own GP, who knew the patient and also the family well continued to provide care. The article and comments are worth reading.
Professor Whitehead echoes Dr Mykyta’s concerns (see below) stating
“The idea exists [among bureaucrats and politicians] that RACFs are just homes. That is clinical nonsense.
- - - - the problems with the structure of primary care for people in RACFs are huge”.
“The whole structure does not match the clinical reality of the situation.” He said aged care legislation concentrates on accommodation but not health care even though the two were directly linked.
Source: Aged Care is broken - MJA Insight, 7 Apr 2014
(Added Dec 2015) The new minister of health has decided that “Aged care and responsibility for older Australians will be explicitly included in the remit of the nation’s Primary Health Networks that co-ordinate services in local communities and ensure funding is used efficiently”. They would be given responsibility and benchmarks for aged-care services.
It is far from clear to what extent they would take over the actual care in the community and in nursing homes. Will they replace the patients general practitioner. Continuity of care might suffer without the compensatory benefits of a more trained and dedicated doctor looking after the residents in nursing homes. It sounds like policy made on the run with neither objective being met, Simply creating more doctors who don't know the residents is not going to solve the problem,
- ‘Limited dollars’ to keep aged care on toes: Susan Ley The Australian Oct 6, 2015 (PayWall)
Dr Ludomyr Mykyta is an experienced geriatrician who has been an adviser to governments at a state and national level as well as as a WHO Consultant in Aged Care. In June 2014 he published an article Aged failings in MJA Insight.
Dr Mykyta is particularly concerned that aged care is no longer a part of the health system and that, as a consequence, the frail and sick aged are not getting the medical care they need.
He too had visited Europe. In criticising our failed system he comments on how “similar prosperous countries were already coping with the ageing of their population. What I saw was the high quality of care and rehabilitation that was routinely provided”. Like other doctors he is highly critical of politicians lack of action and of the controversial 2014 Abbott government budget.
The current federal Budget will exaggerate the disparities in the system and will delay necessary reforms of systems and structures.
This budget has dealt the health and aged care systems a lethal blow. Future generations will have nothing to be grateful for.
Source: Aged failings - MJA Insight, 2 Jun 2014
Radio interview: On 8 September 2014 Dr Mykyta gave an interview to Ian Henschke on ABC radio titled Aged care is "fatally flawed". This is an excellent interview in which these and other issues are explored. It is well worth listening to all of it.
COMMENT: Clearly there are many advantages to a patients own GP continuing to provide care but equally clearly there are major logistical problems with this and as has occurred in hospitals a more dedicated and more highly trained and committed on site medical service may be the best option. In my view this would soon resolve itself if the proposed hub was in place because it would be the medical system that worked with the hub and provided the best care at a reasonable cost that would be developed.
Interprofessionalism and interdisciplinary team care: It is clear that in aged care many professional and non-professional individuals with different experiences and different expertise have a useful contribution to make in re-enabling those who can be improved and in maintaining the health and the quality of life of aged citizens at home and in nursing homes.
The hub I am proposing brings these groups and the community together. The medical profession will be working more closely with others who have different types of expertise and with members of the community. Doctors may need to play a rather different facillitating role to that they are used to.
In 2007 the World Medical Association published a useful paper by Dr Blackmer from Canada Professionalism and the Medical Association in which the pressures on medical professionalism created by a changing world are discussed. The section on Interprofessionalism (pages 22 to 25) is of some interest. The focus there is on cooperation particularly in those sectors where there is a need but insufficient supply of professionals to meet that need - as in aged care. They need to work more closely together and learn from one another.
This material needs to be considered in the light of the government’s plan to use a competitive market system to drive the introduction of Consumer Directed Care. This overly competitive system is likely to put vulnerable people at risk. I am concerned it may also place pressure on professionalism and make the building of trusting inter-professional relationships and relationships with the community more difficult.
Demedicalising aged care
Fitting the facts to your ideas and your advantage: In life and particularly in what I have called a culturopathy, ideas that people want to believe or actions they take too often ignore evidence and alternative opinions. They are simply not sought or examined. Over-medicalisation is a problem but that reflects a failure of knowledge, skill and judgement in those providing care. It is not good medicine and is an argument for more trained people, greater specialisation and more trained doctors to focus these skills. Using demedicalisation as a catchphrase to promote and ignore the medical needs of the residents is very dangerous.
The facts are that we are living longer into our 80’s and 90’s largely because of medical care and that health is maintained because the diseases that kill us or limit our well-being can be managed and controlled. Few die of old age but ultimately as we age, as one or more of our systems fail and need support to sustain them. The vast majority of people aged over 80 have chronic diseases of one sort or another and their wellbeing and ability to live effectively is maintained by medication by physiotherapy, occupational therapy, dental care and a variety of services by other professionals (including. architects, family or community). Medical care is a part of life, starting at birth!
All of this is broadly a part of medical care, regardless of who provides it and has been since the development of public health. The profession has been an active participant or an adviser in all of these development. Medicine is a broad field.
People enter nursing homes because medical care can no longer maintain them well enough to live independently - so in one sense they are the sickest and most frail group in our society and their continued well being depends on skilled medical care or medical advice. When their life can no longer be maintained, they also need skilled palliative care to prevent suffering. Many factors play a part in an improved lifestyle, but all ultimately depend on some level of physical and mental health. We have to be capable of benefitting.
Creating an unconscious world: I recently found a document on a company website promoting a presentation to the “Aichi World Expo Lifestyle Health and Ageing”. in 2005 by a group calling themselves Pacific Bridge Medical who claim to be experienced authorities selling business services and advice to the medical and aged care sectors.
The new world is no longer considering ageing as some kind of disease or medical problem – it is part of life. The majority of older people live or can live long fulfilling lives. A small percentage of the older population may have some health issues. However these can be managed through better practices resulting in the maintenance of a reasonable quality of life. The new world will focus on prevention rather than treatment, on better information and productive lifestyles rather than the negative portrayal of older people and ageing.
Source: Promoting a Presentation by Pacific Bridge to the Aichi World Expo Lifestyle Health and Ageing 2005
These people have been selling this at least since 1997 when one of its charismatic proponents from the USA spoke to our politicians and briefly operated in Australia. They have been listening ever since. They simply ignore the real world in order to be able to do what suits them. All of this is true because older people have had preventive advice and medical care all of their lives and that the chronic conditions that a majority of them suffer from are controlled and managed.
Consequences: Doctors and other health care professionals have felt unwelcome and have left in droves. In the real world they need to be there, not only to supervise care but to facilitate and support what others do - as they have done in other sectors of society for a long time. But doctors do need to have the time, the facilities and the additional knowledge and skills for this rapidly growing and largely new medical sector. What is happening today is in part due to their absence.
(Added Dec 2015) Surveys by the AMA in 2012 show that “nursing home visits by doctors are becoming increasingly rare” with an “ever-shrinking pool of practitioners is providing it” so that there was an urgent need for action. Not much has happened since 2012.
- Fewer doctors visiting the elderly Australian Medical Association Dec 12, 2012
Geriatricians Maddocks, Mykyta and Whitebread all have the knowledge and skills. They know what is going wrong. These experts are criticising the direction in which politicians have taken aged care, something that requires medical support, transferred it to a department that does not provide medical care and then gone looking for businessmen to provide social services instead of the care that the aged need if they are to benefit from this social service.
The response: These doctors are telling us what is needed, but few, including some of the general practitioners who do not have that training, believe them. Industry often address efforts like this from within their own paradigms (patterns of thinking). They consider doctors assertions and objections as turf wars or commercially self-serving (and of course, like everyone else, they sometimes can be).
The best example of this occurred in the big US hospital corporation that I use as a classical example of a culturopathy on my own website. This company ignored the remonstrations of doctors who tried to draw attention to money making strategies that were harming patients. Managers considered they were protecting their own commercial interests so they muzzled them. As a result, over 700 patients had major heart operations that they did not need and some died or had major complications. This was only exposed when a priest, who came as a patient, realised what was happening, went to the FBI and blew the whistle.
A review of General Practice (Added Dec 2015): The University of Sydney has conducted a detailed analysis of “General practice activity in Australia” - the BEACH report. It shows that Australia’s health expenditure is average compared with others and only half that of the USA, yet life expectancy is longer than all the countries compared. Chapter 14 looks at primary care use by seniors and finds that 97% of those over 65 have a regular GP, attend twice as often than younger patients, have one or more chronic condition and use more drugs. Our health system with its specialties was structured to treat patients with single diseases and not for handling multiple chronic conditions.
- General Practice activity in Australia 2014-15 The BEACH study Univ Sydney
The Royal College of General Practice - RACGP website:
The Silver Book is a guide to medical care in nursing homes.
One of the major concerns in Australia today is the low number and the skills level of staff in nursing homes. Nurses, doctors and families complain bitterly about the level of staffing in nursing homes and the consequent failures in care. Providers claim that staffing is adequate and try to reduce levels further to save money claiming this is increased efficiency and improves care.
NSW is the only state in Australia where a registered nurse is required to be on duty at all times (there are loopholes or exceptions even within this requirement), something the industry is trying to have removed completely. The government has conducted an inquiry. The debate, the rationalisations by industry and government, and the battle lines are well illustrated in the submissions, the transcripts and the supplementary documents. The answers to questions by the College of GP’s is below.
- Answers to Questions on Notice: Royal Australian College of General Practitioners
(Added Dec 2015) The senate recommended that fregistered nurses be be required but this was not the position taken by liberal members on the committee and it is not clear what if anything will be legislated..
Australian Medical Association website material:
The Australian Medical Association has produced a number of papers and made submissions about aged care. It has done periodic surveys of the attitudes and problems for doctors visiting aged care facilities and is doing another in 2015
- GP Services to Residential Aged Care Facilities
- Additional funding for access to medical services for residents of aged care facilities
- Report on the 2012 AMA Aged Care Survey
- Medical Care for Dementia, Palliative, and Aged Care Patients
- Care of Older People - 1998 - amended 2000 and 2011
- Access to Medical Care for Older Australians - 2012
The importance of home
The importance of home: In Australia a paper by Emily Millane, Per Capita's principal research fellow headed "The Head, The Heart & The House" is reviewed in The Age. It looks at the importance of the older persons home and the problems with downsizing or moving to retirement institutions. Millane uses the following quote by Ilse Crawford from the Design Academy Eindhoven to introduce the paper.
... "The very word home, derived from the old Norse, heima, describes a state of being as well as a physical place" ...
This is the first of a series of reports which will "consider participation in society through the broader lived environment". Its findings and ideas are interesting. The following are random extracts from the report:
... The starting point is to let go of the idea that rational policies and financial incentives are the only way to influence older people about where and how to live. This approach has not worked.
... However the reality is that many people, particularly current older cohorts, will choose to age in their current homes for a variety of reasons.
... Finally, it is self-evident that the home cannot be a place which gives you any quality of life if you don't have one.
Source: The Head, The Heart & The House - Per Capita, Jan 2015
The review itself indicates that the "physical environment affects one's health". It considers that many are attached to their old home and this is integral to well being. Old people don't make rational decisions about accommodation.
The report looks at how we can adapt and modify the old family home so that the ageing can stay there. It looks at the psychology around this issue. It examines the way the contexts within which people live and make decisions affect what they decide. There is more.
But government and the market don't think this way. They want to find ways of getting people to downsize:
The Senate committee on housing affordability reports recommends that the Federal government investigate new policy settings to address barriers to downsizing by retirees, including schemes along the lines of the Housing Help for Seniors pilot.
The committee believed a better approach would be to explore innovative and affordable policies that allow retirees to downsize (or 'rightsize') when they wish or require to do so, without the sale proceeds necessarily jeopardising their pension eligibility.
The exemption was to be available to people assessed as home owners who moved into a retirement village or a granny flat, but would not have been available to people moving into residential aged care.
Source: Seniors should be encouraged to downsize: Senate affordability committee report - Property Observer, 14 May 2015
It seems that those people who have elected to downsize are happy about that decision, in spite of some problems with finances. Preliminary figures suggest they didn't need home help as early and that they stay out of a nursing home for 4 to 5 years longer. If these limited figures are confirmed by other studies, then going into a retirement village could increase your lifespan. The average survival in a nursing home is much less than 4 years so they must be living longer.
Survey after survey finds high levels of contentment. Residents are rarely sorry they’ve moved from the family home.
As well, village residents gained more years of independence compared to older people who stayed in their own homes. The village residents were two years older before they received in-home aged care services. They were an extra four to five years older before they went into a nursing home. The numbers were small and indicative only but if these findings were replicated in a bigger study across the industry, then retirement village living may prove beneficial not only for residents but government revenue.
The potential problems are highlighted by University of Queensland academic Dr Maree Petersen. “The contracts are one of the most complex people will ever enter into,” she told me. “People are told this is a lifestyle decision not a financial decision but it is a financial decision.”
Source: Retirement villages: new-age communities or grey ghettos? - Adele Horin Blog, 17 May 2015
But others are trying to find a way of staying home for longer. This is also an attempt to bridge the age gap and the ageism that accompanies it.
But a proposed "homeshare" scheme in Sydney could soon bring seniors and 20-somethings together under the same roof. Young lodgers would live with older residents for free or at reduced rent, in return for spending up to 10 hours a week completing chores, such as cooking, cleaning or shopping.
The proposed model is designed to assist young people find affordable housing, while helping older people remain at home rather than in an aged care facility.
Source: Old and young people living together under proposed 'homeshare' trial - Sydney Morning Herald, 22 May 2015
That is sometimes going to be a big adjustment for both sides, as some of us can be difficult and set in our ways. As the chairman of a Body Corporate I found myself being a peacemaker between elderly people owning units and new student renters next door. It required facilitating some give and take on both sides.
The debate about home gets angry (Added Dec 2015)
The Productivity Commission set the cat among the pigeons by accusing Australians of being too cautious with their money and of hanging onto their houses instead of downsizing or getting reverse mortgages so that they could have a better quality of life - in other words spend it while you can. I can’t help thinking how wise my caution was in rejecting the Commonwealth bank as a financial adviser and then later moving on from Macquarie Bank when I felt unvomfortable with the aggressive investments suggested by their new financial adviser. I see how much money those who accepted advice from these banks lost and the scandal that followed. Why do I feel the same way about this advice? This is the same body that gave advice on the future of aged care in 2010, advice I criticised to no avail in a suplementary submission after seeing their Draft proposals. The changes they advocated are now being introduced and I am even more critical because of the deceptive way it is being done.
- Older Australians too cautious about their finances, says Productivity Commission Sydney Morning Herald 30 Nov 2015
Combined Pensioners (CPSA) in a radio interview were highly critical of this advice giving multiple reasons why pensioners needed to be more cautious and why people wanted to stay in their homes
- Productivity Commission report says retirees should sell up to live better ABC News (radio) 1 Dec 2015
The Australian published several articles critical of the changes. One of the most critical was by Judith Sloan, herself once a PC Commissioner and a chairperson or board member of several large companies - some with health and aged care operations. All are scathing of the recommendation for a variety of different reasons.
- ‘Don’t penalise retirees for downsizing’ The Australian 2 Dec 2015 (Paywall)
- FTB Part 2 and pensions under attack because our birthrate fell The Australian 5 December 2015 (Paywall)
- Superannuation reform: when a house is not a home but an asset Judith Sloan The Australian 5 December 2015 (Paywall)
There is an article about this that is not behind a paywall which among other things says “People as they get older treasure the areas they have lived in for in some cases thirty or forty years. They have family and friends nearby and have been visiting their local GP and dentist forever”. We have other priorities in life than serving the economy.
- The family home under attack Switzer Daily 8 Dec 2015
Nursing Home relocations
Nursing Home relocations: Related to the issue of homes is the forceful relocation of residents when a nursing home closes. This happens when a compamy collapses financially and when authorities close down nursing homes because residents are at risk. There is no mechanism in Australia to bring in another group to take over and run the facilities so that residents can remain in place.
Residents have to be relocated, sometimes in a rush, and this causes major stress. They are subjected to spatial disorientation, strange carers who don't know the case, and disruption of their social networks. This has sometimes been poorly managed and has caused major stress and harm. The facilities are these residents homes. A UK paper about this published in a Gerontology Journal in 2012 is reviewed here. A quote from the original article's summary and a link to it is below.
... Reports of post-move mortality, physical or psychological health suggest and confirm that relocation without preparation carries higher risk of poor outcomes than moves that are orderly and include preparation.
Source:Forced relocation between nursing homes: residents' health outcomes and potential moderators, Holder J, Jolley D (2012) Reviews in Clinical Gerontology, 22, 301-319
Preventable and not preventable deaths?
Preventable deaths: Professor Ibrahim from Monash University and Victoria Institute of Forensic Medicine has been active in accreditation and has been on the board of the accreditation agency in the past. He leads a research team based at Monach and the institute.
The first comprehensive study (published in the Journal of the American Geriatrics Society) into injury related or premature deaths of residents in nursing homes (in Victoria) has found that more than 80 per cent are from falls.
The study, led by Professor Joseph Ibrahim, from Monash University and the Victorian Institute of Forensic Medicine, also found that seven per cent of deaths were from choking, 1.3 per cent were suicides, 0.6 per cent were from complications in clinical care, and 0.5 per cent were by resident-resident assault.
“There needs to be a debate over whether residents may choose activities that enhance their quality of life but increase the potential of harm or death, particularly from falls or choking.”
While the study has shown that preventable harm occurs in nursing homes, there must be balance between protecting residents from harm impacts and their quality of life, he said.
Source: Study into nursing home deaths - Healthcanal, 18 May 2015
"We tend not to reflect on these deaths in the same way we do a child who dies in a playground, but we really want to get people to think about the fact that your life is worth something no matter how old you are," Professor Ibrahim said.
Carol Williams, an advocate for people with family members in aged care, said the figures were alarming, - - - She said many families had reported to her that some nursing homes failed to take timely action on fractures and on infections.
"Any forensic analysis of contributing causes would consider the exclusive role of managers in determining the number and the skill levels of staff on each shift," Mrs Williams said
Source: Victorian nursing home deaths preventable: study The Age 17 May 2015
There are three issues here:
- The first is falls. To maintain a reasonable level of fitness, balance, mobility and quality of life residents must remain active and this does entail a risk of falling and injury/death. So, as Professor Ibrahim indicates, there is a line to be drawn between strategies to prevent injury and other quality of life issues. The incidence of falls by itself, does not reflect poor care and making too big an issue of this can be very counterproductive for all residents.
- The second is relationship to structure. Whether the study throws any additional light on Dr Baldwin's findings in regard to the impact of structure on performance, and to staffing numbers and skill levels. That information is not offered in the two reports above.
- The third is the stress for all parties following a death from resident on resident trauma. A report in the Sydney Morning Herald describes the awful problems of dementia patients whose restlessness in nursing homes and their tendency to turn violent causes them to be heavily sedated increasing their risk of stroke and of an inhalation death as in the case below. Shortage of staff and suboptimal skills in handling these patients with adequate diversional therapy and without sedation compounds this problem.
Susan, the wife (in the following excerpt) describes the difficulties and terrible traumas with her physically healthy husband who eventually became unmanageable and was admitted to a nursing home where he felt constrained and became violent trying to get out attacking others. She was worried about the extensive sedation he received and remonstrated. He developed a stroke and later died of inhalation.
What was not acceptable was that the sedation was not discussed with her and she had to submit an FOI request to find out what sedation he had been given.
Confused, he began to wander the corridors, trying to open doors and pressing his face against glass windows. Other residents didn't take kindly to his habit of entering their rooms in search of a way to escape, and there were distressing incidents in which staff dragged him from other people's rooms. During one such scene, John lashed out and struck a staff member.
Recalling this, Susan's voice wavers. Staff gave John an injection of Haloperidol, a powerful anti-psychotic that dropped him to the floor. Afterwards, he was given so-called "chemical restraints" – antipsychotic drugs routinely used to pacify dementia patients in nursing homes.
Source: Dementia treatment: Stemming the tide of loss - Sydney Morning Herald, 17 May 2015
The Victoria Institute of Forensic Medicine publishes a digital news sheet Forensic Medicine Communiques which you can subscribe to on their website. This is mostly articles based on matters that the coroner investigates, and they are often aged care issues. The latest edition has some excellent articles describing the mental trauma for all parties when resident on resident assault result in death and a coronial investigation is required.
Suicide: It is interesting that after a period of decline suicide in the aged is increasing again. Mental illness, while a factor does not play nearly as big a part as in younger people. Loneliness and depression are significant factors. I think it likely that the social isolation, the sense of being a “has been” and of being useless which is a feature of ageing in our ageist society is a contributor to loneliness and depression. The elderly are expected to disengage and put themselves out to pasture and they internalise this.
Another factor that is ignored is the commitment to family and the future of children and grandchildren - the desire to help them on their way - perhaps a feature of our current older generation rather than subsequent ones. The uncertainty, increased risk of large unanticipated costs and the complexity surrounding a system for funding aged care that requires the liquidation of assets and family homes is seen as a threat not only to their security but to their genetic future. The current insecure social and employment environment for the young worries many. The unexpected need to meet crippling unforeseen nursing home costs can place the planned education or support of grandchildren, who are starting out in life, in jeopardy.
With no way of knowing who will be unlucky and need expensive aged care family planning is difficult and precarious. If there is little life left and that holds little promise then rational choices may be made that give the young a greater opportunity in life.
In the absence of good palliative care and a sensible approach to Euthanasia we can understand that when life is near its end and no longer tolerable some will choose to end it. Being in a nursing home makes this more difficult. The decision may be made sooner rather than later.
- Why are elderly Australians taking their own lives? ABC News 8 Oct 2015
This situation is a legacy of the Howard government 20 years ago. By then all citizens were protected from the costs of catastrophic unexpected illness. Removing this protection could no longer be credibly challenged. The government had the opportunity at that time to set up a national insurance scheme to spread the risks so that everyone paid something in advance and knew what their commitment would be when they were old. They could plan accordingly. But this was seen as socialist and contrary to the ideology government were pursuing as they created our market in decrepitude.
Combines Pensioners (CPSA) has been scathing about the involvement of the National Aged Care Alliance (NACA) and particularly the smaller seniors group, The Council on the Ageing (COTA), in our present plight. They agree that it is now much too late because “this approach should have been taken decades ago”. CPSA advocates a progressive approach with the wealthy paying more.
Professor Fine, a sociologist with an interest in aged care has suggested in the second article below that the re-imposition of limited death duties would be the best way of restoring equity at this late stage. Everyone would know what their contribution was and could plan accordingly. Like others CPSA feel that “clustered residential development” is the future of aged care. That is not happening because the large nursing homes are a much more profitable alternative.
- Pensioners slam misleading numbers put out today by aged care sector CPSA 4 Apr 2012
- The real-life impact of aged-care funding policy Professor Michael Fine Aged Care Insite 1 Sept 2015
Assisted suicide (Euthanasia): There has been debate about assisted suicide (Euthanasia) and the right to die for many years. It is an emotional topic often dominated by religious belief or individual adverse experiences - but the issues are given meaning and relevance through personal experience. There were some interesting comments on Q&A by Dr Hitchcock relating this to the sort of disability, palliative and other care that our society provides or could provide.
I agree with her comment that people respond and cope differently, some by simply not hearing what you tell them or accepting the implications. You do have to accept that and handle the situation accordingly by allowing the person to set the context within which discussion occurs. Forcing confronting news onto some does not help them. You have to be receptive to the person in front of you and follow their lead. There is no one size fits all formula.
There are those who are depressed or feel so ill that they want to die but are subsequently grateful that you ignored their request. This is particularly difficult when the family see the suffering and support the patient. If you disregard their views and don't succeed in giving the patient a good life again you will be blamed - but a patients best interests occasionally do require you to ignore their views.
Others have no prospect of worthwhile life and sometimes palliative care is not available at home where the person wants to die, or even proves to be suboptimal. Its a complex and sometimes confronting issue but you cannot generalise.
Here are links to some recent material mostly centred around a recent Q&A program.
- Andrew Denton has fallen for the doctors’ spin on the euthanasia debate The Age 8 Nov 2015
- Q&A recap: Andrew Denton leads debate for euthanasia during emotionally-charged episode The Age 9 Nov 2015
- Euthanasia isn’t a substitute for palliative care at the end of life The Age 10 Nov 2015
- Andrew Denton: Doctors shouldn't look away when dying patients are suffering The Age 10 Nov 2015
- Someone kill my grandmother. Please The Sydney morning Herald 13 Nov 2015
- Rachel Friend: ‘Having a choice about how and when my mum died would have provided her with comfort and peace’ Daily Telegraph14 Nov 2015
Reablement and over-medicalisation
Reablement and over medicalisation: Professor Gill Lewin (and her Silver Chain Group in Western Australia) has carried out widely acclaimed research (see links here) into aged care in the community and this is something that those interested could follow. Her focus is on wellness and "reablement" and she is working to promote that through NACA. She has received an award as a Champion for Seniors from The Council on the Ageing (COTA). She is critical of the tendency to "over medicalise and over professionalise".
In September 2015 the government announced that “The first tranche of 200 short-term restorative care places will be allocated by a competitive process in early 2016”. This is clearly to be welcomed, provided that good restorative care is given and it does not evolve in the same way as other contracted services have (e.g. Vocational training):
- Federal Government releases details of new restorative care scheme Community Care review Sept 23, 2015
Professor Lewin has been president of the Australian Association of Gerontology (AAG) in Western Australia and then federal president. She has been the AAG representative on the National Aged Care Alliance (NACA). So her interests and what she says will probably be a guide to what NACA is thinking and planning so worth looking. I have been critical of the industry dominated NACA because of its economic rationalist policies, the way it has not opened issues to public debate - muzzling its members and so causing the larger pension and senior organisations that were not prepared to accept this to withdraw from the industry dominated NACA.
Only a small number of community based organisations remained including COTA, which the government uses as its mouthpiece when it wants to show that it has consulted with the community when promoting matters with which the other consumer groups disagree. The minister relies heavily on NACA for advice and to develop policy. Many of the things NACA advocates would be very useful, if in my view they were introduced differently and the proposed hub were there to ensure that seniors were protected - so please look at what is proposed with an open mind.
I feel sure that when Professor Lewin talks about over-medicalising and over professionalising she is concerned about poly-pharmacy, overuse of psychotropic drugs and sometimes poor care, both of which make reablement difficult or impossible. It worries me that politicians and other less insightful people will only hear the words. They will see this as confirmation of the validity of their program of reducing medical services including trained doctors and trained nurses in nursing homes and the community.
Wellness and re-enabling those who are not able to lead a full life are, or should be, what all good medical care is directed towards. That is a part of "medical care" whoever actually provides it - its not a turf war. This is a community, many of whom are only still alive because of professional medical care. Probably a majority suffer from chronic illnesses that impair their health and their ability to be effective citizens.
To improve their wellness and re-enable them, good professional medical care is required. That this is currently inadequate and quite often inappropriate is an entirely different issue. This is what Professor Maddocks and Dr Mykyta are equally critical about and are pressing to change.
There are differences of opinion between nurse academics and doctors who are worried that nurses are encroaching into areas of care where they are not adequately trained. Government is supporting the nurses in this because they see it as less costly. Doctors see it as a threat to care.
But that is something that is best resolved in the workplace. The current heirarchical structure there can make this difficult but the proposed hub provides a venue where they and the community can sort this out in real life situations and then drive changes from the coal face. Doctors and nurses are in short supply, so no one should be fighting to preserve their patch. This does not happen when relationships are good.
The economic potential of the aged
The article The economic potential of older people is being ignored in the Sydney Morning Herald 22 February 2015, comes from Susan Ryan, Age Discrimination Commissioner. It is not about squeezing more money out of the feeble and helpless, but about increasing the ages of retirement so that we all keep working for longer. She praises Joe Hockey as if he and not the medical profession were responsible for our soon being able to live for 150 years - which might not endear her to some readers.
It is an interesting article expounding the economic benefits of keeping our noses to the grindstone. But has Ryan considered just how boring and uninteresting it can sometimes be to keep working year after year after year at the same thing - something that was once fascinating. If you look at Part 5 you will see that I talk about paradigms or ways of understanding and the way we become locked into those - called paradigm paralysis.
When I was young, I worked with older people and realised that when you were involved in something and had made significant contributions, you often became wedded to the ideas and the solutions you had found. Criticism or challenge caused you to defend and obstruct. I experienced this and was prevented from doing research I wanted to do. It was left to others to do what I wanted to do and get all the credit.
I realised that after a few years of doing something you often ceased to contribute and could became an obstruction. This is a challenge for those wanting seniors to stay in the work force and I support that in a qualified way. They can sometimes be an impediment and we must be realistic and work around this.
You don't want to be a senior and be put in charge of setting the directions for others because of your experience. Its going to be very stressful as the people you are organising often want to pull down everything that you have done and do it all differently. It will muzzle their potential and cause problems.
But demotion in your late 50s is very destructive of confidence and identity so needs careful management. I resolved to change direction in some way at least every 5 years in order to avoid the paradigm trap, but the absence of anyone to pick up ideas has meant I only managed about every 10 years. Some periods were successful, others not!
So, my message to Susan Ryan is that we need a social system that does more than just train people to do jobs. We need a broad one which encourages lifelong education, intellectual mobility and ongoing relearning wide of employment and growing. We need to learn to make our contribution then move on to something else and have the depth of understanding to do this. This applies particularly to the 40s and 50's where there should be educational and also employment opportunities that enable these workers to become interested and involved in something new. They will be ready to innovate rather than obstruct, contribute more, live longer and be less likely to get dementia - even to 150.
The treasurer has created a new job for Ms Ryan and that was announced on 29th June 2015. She has been appointed as the new Ambassador for Mature Age Employment. That is good, but I hope that she will recognise the problems and tensions for both the young and the old when people remain in a particular job and age there instead of moving on.
Working for Longer is Good for Australia – Human Rights Commission (Probono Australia 23 Nov 2015): An article on Probono quotes Ryan’s views on continued employment. At least the CEO of IRT Group, one of Australia's largest community based seniors lifestyle and care providers said they needed to be able to choose if they wanted to go on working. For some the continuing high competitive pressures of todays marketplace becomes all consuming. This is not something they want to continue with for longer than they need to. They have better ways to spend the rest of their lives. They have other far more productive things they would like to do. A lack of mobility and intellectual activity consequent of boring repetitive work has left some with limited insight and without the resources to contribute further.
I would be far happier to see Ryan advocating intellectual and employment mobility, building knowledge and interest throughout life. Reducing competitive pressure and opening opportunities for growth in skills and knowledge over a lifetime, starting in middle life when there is intellectual capacity but when it is difficult to do.
Advocacy and Dissent in aged care
Human rights: At a fundamental level, on these web pages, I am talking about the rights of older vulnerable people in Australia to receive care when they need it, to have the best life they can and to die in comfort. The proposed hub is advocating for a system that protects them and makes it much more likely that this will happen.
A new guide: ACT Human Rights and Discrimination Commissioner and acting Public Advocate, Dr Helen Watchirs has just issued a guide to Human Rights for advocates which is intended to help them achieve their goals. I have not yet read it but it seems to outline what is officially available in Australia and give some guidance in how that can be used. It will certainly be worth looking at.
The promotion indicates that it is intended for organisations helping individuals. It was “modelled on similar publications in the UK” and “in consultation with a number of organisations including the ACT Public Advocate, ADACAS, Advocacy for Inclusion, the Community and Disability Services Commissioner, and the Children and Young People Commissioner”. I will be interested to see what it offers community groups wanting to address systemic issues and government policies that result in the breach of human rights.
Experience of government systems: From what Aged Care Crisis have seen in aged care, those who have tried to use the available sources like the complaints scheme, have found that at best it is extremely arduous and at worse, does not work most of the time. Individuals and families who try can be left sadly disillusioned and sometimes psychologically damaged, particularly when this involves whistleblowing. Employees in aged care advocating for residents are particularly at risk.
We should not expect too much from government systems. We should use them to begin with but not be overly expectant. Think ahead and be prepared to go beyond them. My view is that these processes were set up in 1997 at a time when adverse events in aged care would have been politically disastrous. Because of the pressures at the time they were not set up to work effectively and this is still the case.
You need more: My own experience is that it is important to know what is available and be prepared to utilise this, but it requires much more than official channels. You also need leverage, ie, a powerful outside force. This may be in the form of assistance from people with power such as politicians, the wealthy, the press and anyone else with influence. That is how the system works. Embarrassing disclosures can sometimes be very effective with politicians and corporate businesses.
Strong community support and action can be very effective if it is soundly based and is continued and maintained. The use of the internet by groups such as Alvaaz, Getup and Change.org has provided a very effective way of mobilising support and getting positive outcomes. Some of these can also be very useful when addressing systemic problems. My own view is that understanding the social dynamics and the response of people to being challenged is very important as is flexibility and a willingness to seize opportunities within and outside the system.
Advocating about systemic issues: To be effective in making major changes there should be a sound methodological, theoretical and evidential base to what is planned and widespread engagement of the community in defining that and progressing it. The arguments must be sound and logical and be compatible with available evidence. The renewable energy and climate change movements are good examples of well organised advocacy.
The web pages in Solving Aged Care seek to establish a sound theoretical, methodological and evidential base and to engage the community in developing and embracing that. As a community we then have a solid foundation from which we can work to utilise all of the resources available and also, when needed, innovate and seize opportunities by going outside the system.
I do not expect everyone to read or understand all that I have written, but I would like them to engage and look at what is happening within their own frames of understanding and then contribute so that we build up consensus and a broad understanding of what we want.
Therefore, we do need to look at what is available. The illustrative example of success Dr Watchirs gives from the UK is trite and should not require all this to achieve. While it reveals the sort of thing that seems to be common across the aged care systems in the US, the UK and Australia, we are not going to address the core problems and the widespread problems by only securing the rights of isolated individuals.
If this is all that can be achieved (and I do not want to minimise the importance for the individuals) then we will only be scratching the surface of the problem and be making ourselves feel good - the problems will fester on and there will be many more isolated examples. It is only when we bring all of the isolated examples together in one place that we recognise the extent of the problem and begin to understand what is happening and why.
We do need to understand what is available and harness that to our efforts, but we will need to do much more.
Helen Watchirs - - said the Guide was primarily aimed at organisations that assisted individuals in advocating better outcomes from government and other public authority service providers.
"For example, the case of a publicly run aged-care facility, which initially intended to separate a couple that had been married for 60 years because of their different care needs," she said.
"After a non-government organisation made representations based on the provider's obligation to consider the right to family, the couple were reunited."
Source: New guide for clients dealing with PS - PSnews (The Australian Public Services News Network), 2 Apr 2015
More information: full guide Achieving the Rights Outcome - ACT Human Rights Commission
The Government advocacy service: The government runs an advocacy service and this is paid for and contracted to groups in each state using competitive tenders. The system seems to be variable between states and is not integrated with the other oversight of resident support services. Their activity is restricted to the support of individuals having problems in accessing or using the service - so nurses and academics who are attacked for exposing failures are not supported.
We hear very little about this advocacy service in the reports in the press or in the comments of those contacting ACC. It is difficult to know how effective it is but the impression is "not very".
The Department of Social Services has commissioned a commercial group to investigate aspects of the government's advocacy service. They asked for submissions but none of this is going to be published or debated publicly. This is an important service for the community. It is something we should know about and participate in and it speaks for the mindset in government that those who go to the trouble of contributing are not going to see what others are saying or have access to the final report..
Aged Care Crisis is therefore making their first contribution to the Solving Aged Care debate by inviting disussion of advocacy using their submission to the inquiry to initiate argument and suggestions. Their proposal is congruent with my suggestions for an aged care hub. I suggest that any comments about the current government advocacy program and how it can be changed be made there.
If you have had any experience of the government's advocacy service as an advocate, as a nursing home employee or as a family member then please go there and contribute. No one has enough information to assess what it is doing.
To look at their submission, visit: Review of Commonwealth Aged Care Advocacy Services
In depth information: Professor Brian Martin is at the University of Wollongong. His interest is in the dynamics of power as well as the dynamics and politics of controversy. He has studied and written about Dissent and Whistleblowing. He has been president of Whistleblowers Australia and is currently vice-president. He has written many books and articles. He describes the difficulties in promoting alternative points of view and what can happen to those who speak out to expose failures or to promote ideas that challenge establishment thinking.
Those wanting to explore this further may find articles of interest on Brian Martin's website
Being sympathetic and strong: We also need to understand that people will go to extraordinary lengths to protect the ideas that underpin their lives and everything they have done there. We need to recognise the difficulties that those challenged have and we can try to be sympathetic. Importantly understanding their position is helpful in withstanding the personal attacks and adverse criticism that critics can be subjected to. We need to consider strategies for dealing with them.
- ACSA commissioned report: Not for profit sector in the aged care industry SGS Economics & planning report for ACSA October 2014. This report commisioned by ACSA looks at what the not-for-profit sector does in aged care and its performance.
- ACSA: The Aged Care Workforce in Australia Position Paper Feb 2015. This exploration of staffing will be of interest to many
- Department of Social Services: Aged Care Compliance Policy Statement 2015 - 2017 This paper sets out the federal governments policies and approach to oversight of aged care.
- The Hon Susan Ryan AO, Age Discrimination Commissioner: addressed the National Aged Care Alliance about the provision of aged care on 7 February 2014. She focused on human rights.
- Alzheimer's Australia: Quality of Residential aged Care: the Consumer perspective - a Report for Alzheimer’s Australia, Paper 37, November 2013
At this time, Glen Rees (who had some reservations about Consumer Directed care) and Ita Buttrose (who was seen by the industry as one of their strong critics) were dominant in Alzheimers Australia. While the paper is supportive of the planned changes in aged care (their membership of NACA requires this even if they had reservations) it also makes a number of criticisms. Interesting is the strong emphasis on Consumer involvement - something that the community aged care hub I am promoting sets in place.
This was in 2013. In November 2013, economist and supporter of corporatisation Peter Shergold moved from his role working for government to become chairman of aged care provider Opal Healthcare. Before changing its name from "Domain Principal" to Opal, the company had a tarnished record for care. In June 2014, Alzheimer's Australia entered into a partnership with aged care provider Opal Healthcare in spite of its tarnished record - something I am very critical of on my own web pages.
In July 2014, Graeme Samuel, past president of the National Competition Council and then chairman of the Australian Competition and Consumer Commission, became CEO of Alzheimers Australia. He has been a strong advocate of competition and market forces, including in health care where he once delivered a controversial paper. He and Shergold would have had similar views. There seems to have been an ideological shift at Alzheimer's Australia and one wonders about that.
Other Aged Care issues
In the next slider section I have included notes and links about Ageism and a new Australian blog about the aged care marketplace. There are also notes and links to material about the impact of sponsorship and financial support on behavior and outcomes. There is a section looking at what happened when the care of the vulnerable was contracted out to commercial enterpries and made competitive in another sector in Australia. This has relevance for our plans to supply Consumer Directed Care by contracting it out commercially, rather than use local resources.
Aged Care and the marketplace
The Aged Care marketplace
HammondCare Chief Executive Stephen Judd, has started writing a series of blogs about the "increasingly competitive environment of aged care". HammondCare is not-for-profit and faith based. Stephen considers a sense of mission very important. He generally says exactly what he thinks. He is always interesting.
While I don't want to rain anyone's parade, in a competitive environment there has to be winners and losers! Throughout this blog series, I am going to explore who I think could be the winners and losers in an increasingly competitive aged care environment, and why.
I believe the provider that will be winners will compete on the basis of one or more key considerations:
- Differentiated product
Source: A competitive care environment: winners and losers - Stephen Judd, 2 Feb 2015
Quality: This competitive environment is what happened in the USA in the late 1990s. My experience is in studying the US health and aged care systems during the period when they were competing aggressively and consolidating. Without an effective customer marketing and not quality was the critical factor in success. The main losers in the wild scramble to grow and build empires were the frail residents who through no fault of their own were trapped in all this. It will be interesting to see if Stephen Judd talks about them.
Prices: In the USA much of the talk about prices was empty rhetoric, especially when insurers or government were paying which was often the case. These companies were growth companies and they were all growing by buying smaller companies. To do that they were making an enormous amount of money, some of it fraudulently and at other times by price gouging the poor, charging several times more than the insurers paid.
They employed debt collectors who forced the poor to sell their cars and then their homes to pay the bills. The Latinos, among the poorest and most vulnerable in the USA were targetted. They eventually found a legal champion who went to court on their behalf against the worst and most ruthless offender, which is why I know about it and wrote about it at the time. Once again the prime offender was Tenet Healthcare (the renamed NME), the company that I have used as an example of culturopathy elsewhere. It is clear that pushing up costs and driving the already poor into destitution gave them a competitive advantage.
In aged care much the same happened although most of the big empires at the time were built by overservicing and bilking government in step down care so private payments were not a big issue. At the same time as vast fortunes were made from step down care to the relatively healthy there was extensive cost cutting in the nursing of the unprofitable elderly and the aged suffered.
If there had been real competition on price and their success depended on it then these companies would not have had the income stream to buy competitors and grow in the way they did.
Another problem is price collusion, something that is probably more common than most people realise, but is very difficult to expose.
Competition: Competition was primarily about power, size, political influence, the manipulation of wealth (big companies dropping prices temporarily in a local area to force a competitor out of business) and marketing. The aged care market consolidated into a small number of large market listed and private equity owned chains that focussed strongly on profits so that they could compete in acquiring small competitors. They achieved this by control of market sectors, expensive acquisitions or mergers, and keeping costs down - mainly by reducing staff. Not for profits tumbled like ninepins if they did not behave in the same way.
So those smaller groups who try to compete on price in this sort of marketplace might be stabbing themselves in the foot.
In the USA, care was poor but big companies developed a complex corporate structure to shield them from lawsuits.
Differentiated product: The third competitive advantage Judd mentioned is a differentiated product in niche market. This is only possible if the sector is too small for the big companies. This is where the not-for-profits might be successful. That condemns those companies doing this to a more peripheral role and they are unlikely to become a force or have much impact on the industry.
It will be interesting to see what Judd says about this in the later blogs and if he talks about what has happened in the USA and UK.
In a page on my own website I revisit this issue and challenge Judd to show how he will address these issues.
Advertising: A nursing home company’s success in a competitive marketplace depends on persuading prospective residents to choose them. They go to considerable lengths to create the best impression they can. It is unusual for a resident to leave a nursing home and go elsewhere once they have been admitted.
The first and only contact for many seniors and their families is a nursing home’s attractive web site telling them all the good things, then a friendly phone call asking for details which is followed by guided tour run by staff in the nursing home. All of these staff may have been trained to sell by professional trainers.
This training might have been given by professional businesses like specialist aged care marketing experts Brand Partners which presented a paper “The art of marketing and selling Aged Care Services” at an ACSA industry forum in Victoria in October 2015. The papers can be downloaded here.
Perhaps it is one of the “more than 300 Aged Care facilities around Australia” that have engaged Murray Strategic “since the 1st of July 2014”. Murrayy Strategic is an aged care business advisory and training group that has formed a strategic partnership with LASA. LASA is the aged care body representing the for-profit and also some of the not-for-profit aged care providers that feel there is now little difference between the two types of provider.
On its web site Murray Strategic “offers a range of services that assist you to achieve the best admission outcome”. This training includes skills in telephone answering, sales and conducting tours of the facilities. It markets this training as ”Imagine the power of placing an end-to-end ‘tour’ of your aged care facility at the fingertips of potential residents and their families. It also presented a paper “Aged Care Uncovered” at the ACSA meeting.
Will these seniors get the sort of information they need to make this important life changing decision, or will the negatives be hidden from them causing them to make the wrong decision?
One of the interesting things that you find when you collect information and bring it all together is the startling contrasts in the way different groups see the same activity. Of interest are two reports about what is claimed by a company to be an award winning revolution in aged care. I am simply going to give the facts as they came to me.
- Overwhelmingly in international studies the number and quality of staff is a critical factor in care. It is also the largest cost.
- In Australia we do not have the data needed to compare staffing with standards of care so we have no way of assessing any links between them.
- As the competitive pressures rise Australian companies are coming up with strategies to reduce staff, claiming that by altering rosters they improve care by using fewer staff. It is not clear how they assess this improvement.
- There is much to suggest that there is serious understaffing in aged care, claimed by some to be a shortage and by others as under-utilisation.
- The Quality Agency accredits and together with government regulates the industry. It does not collect and report staff data or failures in care and very few facilities fail to get full marks in their surveys which focus on process rather than outcomes.
- The federal government has a policy promoting marketisation, marketplace innovation and consolidation in aged care
- The quality agency awards a number of Federal Government Better Practice Awards each year.
- Nick Ryan was the CEO of LASA, the body representing the bulk of the providers of aged care until 2014 when he was appointed CEO of the Quality Agency - some might think the fox guarding the hen house.
- LASA’s current CEO and many of its members were among those pressing for the removal of a requirement that all nursing homes in NSW have a registered nurse on duty at all times.
Here are links to two articles about the same company, one from Victoria and the other from Queensland.
- Concern as Arcare Overton Lea in Sydenham cuts 46 jobs and scales back hours The Leader 25 Nov 2014
This article reports the complaints by nurses about the consequence of staff reductions in a Victorian nursing home which they say were cost cutting and resulted “in utter chaos”. Management justified the reduction in staffing as due to a “dedicated staffing model”. This meant meant that “staff numbers need to be adjusted”
- Dedicated staffing: a revolution in aged care started on the Gold Coast ABC radio 612 Queensland 25 Nov 2015
This second is a radio advertorial promoting this “dedicated staffing model” as a “revolution in aged care” in a nursing home in Queensland. Even more interesting is that Arcare won a Federal Government Better Practice Award in 2015 for its “dedicated staffing model. The awards are made by the Quality Agency.
My particular interest is in the different ways that different people and groups see and understand the same things. Please look carefully at the facts I have listed and consider the worlds from which these different groups come and then look at the reports. Are they looking at this in the same way or is one looking at it from the point of view of a carer and the other from the point of view of a successful business practice. Alternately are we the victims of some wicked conspiracy by either “the family” comprising industry and politicians or the scheming unions. Its all too much like science fiction!.
We don’t have the information so we just don’t know. Do we advise someone to go to this award winning nursing home or should we warn them to stay clear?
How will Judd's not-for-profit nursing home providers that have consciences fare when to succeed they have to oversell itself and exaggerate what is being offered.
This is why we need something like the proposed Community Aged Care hub that actually knows about the nursing homes and advises potential residents accordingly. A local community group primarily interested in the residentsthat is talking to both providers and staff, and most importantly collecting the staffing and care data needed to assess whether the dedicated staffing model is indeed a revolution in aged care or simply a profit generating strategy which is being justified by misplaced management enthusiasm. To an outsider like me it sound very much like something so obvious that if it has not been happening we ought to ask why - because its certainly something that used to happen when people simply staffed sensibly. How do you manage the complexity of care if you don't have staff who are dedicated to a limited group of residents whom they know and whose needs and behaviour they understand - particularly if they have dementia.
The new money in aged care comes from the wealthy who can afford to pay much more for luxury. This is where the profits come from and this is where the focus of aged care is shifting. Not-for-profits are also forced into serving this market if they want to compete. Both are building palatial 5 and 6 star nursing homes to attract this group. A strongly competitive market dictates its requirements and to conform providers must comply.
But the vast majority of us are not in this financial bracket and in this market we become peripheral to the competitive process. The focus is not on us and we are going to be left with what is left over and even be considered as dispensable. Hopefully this will not get as bad as the USA where one US aged care company in the 1990s simply discharged less profitable residents to their families so that they could fill their beds with more profitable residents and concentrate on them. The way the market can be distorted is addressed in this article from a blog.
- Old, poor and lonely: the other side of the ageing story October 13, 2015
Sponsorships and similar financial support
The conflicts of interest involving the pharmaceutical industry and doctors are of course widely known. But there are conflicts of interest whenever there are sponsorships because many of them are intended to influence or to protect the donor from criticism. Dietician Associations have been a target in the USA and a recent article on Croakey and a review looking at the sponsorships and close relationships with Australia's dieticians is illustrative of problems that have muzzled democratic debate and distorted the integrity of many community groups in that country.
It's so bad - that in the USA dietary advice that ignores the interests of the food industry has been described as "courageous". Bodies serving the community and informing the public (eg. Wikipedia) refuse all industry and government sponsorship relying only on donations from users or members. This is in order to maintain their credibility. There is more information and links on The Croakey Register of Influencers in Public Health Crikey 23 Feb 2015
These articles are interesting and important because hardly any of our Australian community organisations are open about their funding, and few if any, refuse corporate or government sponsorship or support. We have a number of groups representing seniors and pensioners and others representing the community in various ways.
How many of them publish their sources of income and their sponsorship on their websites where we can look at them and decide whether what they are saying is in our interest or to meet the expectations of their industry or government supporters?
Competitively contracting government services to the vulnerable
Government is planning to rapidly contract the care of vulnerable seniors at home and even in nursing homes to the market calling it "Consumer Directed Care" or CDC. There is much to suggest from the information available that this will be open slather for the profit hungry. It is worth looking at what happened elsewhere and hopefully it will not get quite as bad as that.
Consider what happened to the vulnerable young and unemployed after the Commonwealth Employment Service was contracted out in 1998. ABC - Four Corners have just done an investigation The Jobs Game and found widespread fraud. There is more here.
Its an interesting insight into what happens in a culturopathy - how it works to harm people and how the sort of people who are most poorly suited to provide these services are very successful. In order to compete all of the others have to behave similarly. Its totally impersonal and inhumane. These are all features of a culturopathy. I describe other examples of culturopathy on my own website but this is a good example to think about.
Exploiting the vulnerable
ABC programs have also recently exposed several very similar instances where the market has exploited the vulnerable, and regulators and other businesses have turned a blind eye to this, There was the exploitation of vulnerable vocational students funded by loans from the government on 3rd March and the exploitation of the poor using short term loans in Game of Loans on 30th March. Slaving Away on 4th May reported the financial and sexual exploitation of vulnerable foreigners brought into Australia to work with the food industry as pickers and packers for products sold through the large supermarkets in Australia.
It seems to have become the norm for almost every vulnerable group to be exploited and misused if money can be generated by doing so. This is not unique to Australia as big corporations seem to almost routinely exploit the vulnerable in 3rd world countries whether this is in mining or in factories including in India and China. In the USA health and aged care are both good examples. Like the big Australian supermarket chains exploiting foreign workers these companies all have public policies and claim that they do not exploit the people who make the products they sell.
But aberant behaviour in response to social pressure is not limited to the marketplace. It occurs in the most prestigious organisations when the social pressures are strong enough. In the USA for example some major universities, anxious to offer gifted sportsmen scholarships and degrees in order to get them on to their sports teams, are running fake classes where little if anything is taught and the students are left without the education they were promised. We have seen a similar situation in prestigious sports in Australia and elsewhere where strong pressures have led to the use of illegal enhancing drugs.
While we are interested here in the impact of strong social forces in the marketplace and specifically their presence in aged care we need to understand that it is a more general phenomenon. As I see it aged care is only part of a much wider problem, but a good place to start addressing it. We must not make the mistake of analysing aged care outside the context of the society in which it is situated and the problems there, even though the ways of addressing the problems may differ from those used elsewhere.
In my experience aberrant behaviour tends to occur in vulnerable sectors whenever competitive forces whether commercial, sporting or political are excessive and so strong that they overwhelm social restraints built on the values and norms of civil society. Other forces such as poverty, existential pressures, extreme alienation, excessive ambition etc. can similarly overwhelm the constraints of civil society and result is dysfunctional behaviour. As a general rule regulation and punishment exert only limited control, partly because they are applied after and not before the situation arises. Deterrence is often not a consideration during the development phase of deviant behaviour.
The time line: An important point to make is that because the people who introduce market changes are motivated, by the belief system and are sometimes under pressure from critics, they genuinely want to make this work, and in spite of the pressures in the system they do make it work for a time. Early success should not be seen as validation of the belief system although proponents will claim that it is.
Ultimately the initial enthusiasts move on and market forces impose their rules on the system. So it may take a number of years before problems appear and several more for them to be exposed and become major issues. It can take anywhere from 10 to 40 years or longer before pressures become strong enough for the matters to be addressed. The time taken depends on a multitude of factors.
It took between 10 and 20 years for the health and aged care problems to become a major social issue in the USA and nearly 40 years later they continue to smoulder on with no sign of any attempt to address core issues. It has taken 17 years for the jobs scandal to develop and be exposed and probably a similar time for the vocational frauds. In neither case is there any sign of a willingness to confront the basically flawed patterns of thinking that gave rise to them and address the issue. In aged care problems appeared 2 years after the 1997 aged care "reforms" and have been ongoing since. After 17 years we are still calling them isolated events and ignoring the underlying problems. In fact we are applying the same ideas ever more rigidly and so compounding the problem.
This pattern is not limited to the market. As students in a liberal South African university in the 1950s we thought that apartheid (the ideology of separate but equal development) would not last 20 years. It took 40 years, enormous international pressure and extensive social unrest before the true believers in the ideology and their supporters confronted the problems in the belief system and made the changes needed. Similar patterns can be seen with most ideologies and only some have been resolved without civil or international warfare.
The proposed hub is intended to shorten this cycle by addressing key problems in aged care within the capitalist system. It is also intended to provide a venue where problems developing in any future ideological system (and societies do live by and advance by adopting ideologies) would soon become evident and might be addressed. No ideology is universally applicable and because they are all based on a limited understanding of our complex world they all have problems and limitations.
I write about CDC on at greater length on my own seb site and these matters are particularly relevant there.
How and why do we develop illogical ideas
My interest is in trying to understand why people adopt illogical ideas and how this leads to harmful practices. We can understand it if we look at the way others behave and then at our own behaviour. It happens to all of us on occasion.
Developing ideas: We all have to have views and ideas so that we can have some way of understanding the world, our position in the world and what we do here. But we are social beings and these ideas are not real until we have expressed them. We have to say or write out our ideas and then have someone - even an imaginary other person accept them.
Its talked about as objectification (throwing it out there for inspection) and then internalisation (inspecting it or having it confirmed by others and then adopting it firmly ourselves). We have lots of thoughts but we only accept them as real and as our opinions when we have been through this process. Social scientists have written tomes about it.
By remaining silent and not objecting to someone’s dogmatic assertions we are implicitly accepting and making them real for that person. If they are false they will fail to confront that.
Observing it: So if you watch other people, you will find them expressing their views to you sometimes very forcefully - particularly when that view is important to them and they need your assurance to make it part of their own belief system. If you then watch yourself you will see yourself doing it too! Usually we will choose people whom we know share our views and avoid those who are unlikely to do so - at least until we are so convinced that no one can persuade us.
Groups dynamics: Groups and the dynamics of groups as they interact play an important part particularly when ideas are discussed by people with similar experiences of life. Because life and the world is so complex most ideas expressed, including the one above, have some truth but this truth is incomplete or partial. So groups that think alike embrace the same ideas.
Sociologists write books exploring the way we build up patterns of ideas about the way the world is. They call this “social reality", because it is created by social interaction and is accepted as real even though it is only an incomplete representation of the complicated real world. Once we have adopted ideas and used them when making decisions they become very important to us and we defend them, often by attacking the messengers credibility. Social scientists have written books about this and it is called labelling theory.
Doctors are not different but they have a different life and experience of the world so do see many things differenty, as for instance, to many businessmen.
World views: Our ideas about the world change as society changes and we talk about “world views” in different historical eras and in different societies. Some like the writer John Ralston Saul describe our current civilisation as unconscious because the theories and ideas by which we live (social reality) are so divergent from the facts and evidence about the world.
We are not conscious of the real world because we elect not to see what we observe or don’t acknowledge that we have seen it. This is because this would challenge ideas that are important to us. How that happens is another subject! What is clear from history is that the world views we have in 100 years time will be different to those we have today, and ours are likely to look ridiculous.
Applying this knowledge: So if we challenge someone's ilogical ideas at an early stage they are still uncertain about them and are likely to think again or abandon the idea. But once an idea is firmly established and accepted as real, particularly if the person has used it to justify what he/she does, then the person is likely to reject your argument. They will label you to discredit your opinion and probably avoid you in the future - a good way to lose friends.
The proposed hub is intended to involve people with different experiences and different areas of knowledge in the delivery of aged care so that they are continually talking and discussing. Ideas are more likely to be confronted at an early stage and more sensible ideas adopted that reflect multiple different experiences and so a better understanding of the situation. You gain friends instead of making enemies - and even develop insight. This website itself sets out my ideas and invites people to set their own thoughts and ideas against that so that we can resolve or integrate and come up with a better overall grasp of the situation.
Modern marketing: My personal view is that modern advertising and marketing plays an important role in creating and maintaining an unconscious civilisation. Public Relations firms are paid to present what a business does in glowing terms. They downplay or ignore knowledge, facts and ideas that don’t support the business and beat up ideas that will please their customers. This puts the ideas the salesmen wants the customer and his/her peers to adopt into a framework that will appeal to them. They come to identify with them.
The most susceptible and the most likely to internalise the ideas as their own are those whose self-interest, wealth and credibility is enhanced by them. When they support what the reader does or likes they become real. More and more people accept them. This process plays an important role in the development of what I have called culturopathies - patterns of thought and belief (cultures) that cause well meaning people to develop systems and indulge in practices that when applied are likely to harm society and its members.
But to come back to these pages: In Part 5 I will be looking at what happens when two groups of people who have had different life experiences and so have different view of the way the world works are forced into collision - and how the powerplay between them unfolds. One group's views developed in community focussed humanitarian activities like health and aged care. The other developed outside in the marketplace and it is imposing its views. It is far more powerful. The two groups previously operated in different domains and community structures kept them apart and controlled the relationship between them.
An elderly Australian wants to return home ... but?
To round this page off there is an account by a perceptive intelligent elderly Creek Australian author thinking of returning from Greece to Melbourne now that she is getting old. But having looked at our aged care system she is having second thoughts.
She was “struck by the resemblance between people in power in Australia, and those deciding policy in Brussels - - “ both “run by accountants manqué*, whose chief interest is in cutting costs. The human cost does not seem to be a consideration”. She felt a rant coming on “What has happened to the general mindset? To compassion? What has happened to the English language? - - - I have a vision of George Orwell sitting on a cloud and wringing his hands in renewed horror, for now the business model and associated language appears to have taken over the world".
Amen! Why is this so obvious to outsiders and yet Australia and its citizens so blind. Read it all at the link below.
- Growing old in Australia is a difficult business EurekaStreet.com 6 Oct 2015
*manqué is a word used to "describe what a person could or should have been but never was"ad