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THE Royal Commission into Aged Care has opened. I look forward to it with great anticipation, but even greater trepidation that it will end the same way as previous high level inquiries into elements of aged care: tweaking round the edges and high-sounding cosmetic changes that have no impact on the fundamental causes of the problems.
My concern is that the focus will be on processes and practices within a structure and a system that is taken as a given, the status quo that remains unquestioned. This would be akin to investigating the collapse of a building without examining the foundations.
The Commission resulted from the widespread public concern about the abuse of residents in aged care facilities, most clearly typified by the Oakden disaster. This should make us think. I made several submissions to the various inquiries into this affair because I strongly believe that it represented an example of the gross failure of clinical duty of care. One thing that the victims had in common was that they were somebody’s patients. Most of the victims had some degree of dementia, and it is highly probable that many had been assessed by a geriatrician or psychogeriatrician prior to their admission into a residential care facility.
I believe that the medical profession, particularly the subspecialties of geriatric medicine and psychogeriatrics, should examine our consciences to determine how we contributed to these events through our actions and practices, as well as our inaction and neglect. We must recognise the underlying causes of the situation at the systemic level and use our lobbying power to demand real reform. So far, we have behaved as academically aloof bystanders.
We cannot deny that the atrocities were committed on our patients, on our watch, under our banner.
As medical practitioners, we are obliged to operate in compliance with our professional and medical, ethical, and legal obligations in the best interests of our patients and our patient population.
In general, we are confident that our practices are scientifically evidence-based and cannot be improved on and that we behave ethically and meet all our obligations.
I believe that this confidence is unfounded and that our practices are questionable from the first contact with our patients. It is instructive to examine how many breaches of our ethical obligations we commit from the beginning.
The initial assessment of a patient is a pivotal event, not a routine consultation. What is determined and the consequences of that determination have a major impact on the rest of the life of the patient and the patient’s life partner, relative or caring friend.
I contend that the routine and deliberate conduct of initial specialist assessments of elderly people suspected of having dementia or mental illness, in the presence of other people, is discriminatory and leads to bad practice and outcomes for our patients and their partners and relatives. This is because critically important decisions and actions are based on incomplete and poor quality information or evidence.
This is the opening statement of a typical psychogeriatric report conducted by telemedicine (all of the names are fictitious):
“I reviewed Ethel over telemed accompanied by Mary White (registered nurse [RN]). Ethel was accompanied by her husband Fred and daughter Betty. Country mental health worker, John Smith and Felicity Adams (an RN from the local hospital) were also present.”
This is a failure of recognition of the patient’s right to the opportunity of expressing their concerns, needs and wishes confidentially to the assessing clinician. Furthermore, it puts them under duress in that it greatly limits what they can openly say in front of the people present, including their family. It also puts the partner and relatives under similar duress, so that very important information is never revealed. Just as there are things that you can only learn from the patient, there are many more relevant things that you can only learn from the partner and relatives.
In treating our patients this way, the medical profession and the specialties and subspecialties thereof have accepted the legitimacy of the creation of a minority group, “the aged”, as justifying treating everyone in this age group differently from other adults.
My first forays into demography were in the early 1970s, when I was learning how to become a geriatrician in England. The population was divided into three groups by age: children (aged 0–14 years), working age (aged 15–64 years), and aged people (aged ³ 65 years). Children and aged people were often referred to as the “younger dependency group” and the “aged dependency group” for the purposes of determining dependency ratios. Little has changed, but it defies all logic to believe that a group as diverse as people aged over 65 years can be considered as being stereotypically identical.
When we treat a defined group of people differently from the general adult population this is discrimination (injustice) and a breach of respect for the person’s right to autonomy. We deprive them of individuality and respond to them in generic ways guided by generic guidelines. This is the extreme opposite of respect for the right to autonomy.
In my experience, it is quite rare for the patient to trigger the GP referral – in 2018, I completed over 270 assessments and I am currently analysing the data. Indeed, the assessment often comes as a complete surprise to the patient, who is often angry and resentful. The referral is most commonly triggered by the partner and relatives in the community, and care staff, partners and family in residential care facilities. The decision to seek an assessment is often very difficult for the partner and relatives to come to. It is often the result of disturbed behaviour that has reached crisis point. It is obvious, as stated above, that there is information that only the patient can tell us and that only the partner can tell us if given the opportunity to speak in private. This is critically important contextual information.
The teleconference is perhaps the most intimidating assessment environment, but it is also the most spectacular example of missing the opportunity to learn something about the context of the presentation of the issues that led to the assessment. I strongly believe that, given the implications of the assessment, it should take place in the patient’s environment.
As specialists and consultants, we are being asked for an expert opinion by a referring GP. It is interesting to observe how many psychiatric and psychogeriatric reports are headed with the bold admonition: “Not to be used for medico-legal purposes”.
There are medico-legal implications in every assessment. Indeed, the law can teach us a great deal about who should be recognised as an expert and the quality of the evidence that we use to come to our conclusions.
When we act as clinical specialists to whom patients are referred by other medical practitioners, we must act in accordance with all our professional ethical obligations and the full awareness of what constitutes an expert at law.
As a profession, we claim to be dedicated to evidence-based best practice. Our gold standard is the randomised controlled trial. A major difference between conducting a randomised controlled trial and acting as a clinician is that we enter into a doctor–patient relationship and must elicit a very different type of evidence that must nevertheless be of equivalent quality.
It is also expected that the information that forms the opinion was directly obtained by the expert, not others. All sources of information must be made clear. Many psychogeriatric assessments and interventions involve a mental health worker armed with generic lists and questionnaires who conducts interviews and reports back to a psychiatrist who has never met the patient and is not familiar with the patient’s environment.
I almost never offer a clinical opinion on living people unless, at the very least, I have met the patient privately and attempted to engage them. I then interview the partner or relative privately, and in hospitals and aged care facilities, I often interview a care worker who is very familiar with the patient’s care needs, feelings and behaviour.
The critical initial assessment must identify all the manifestations of cognitive impairment, not just memory deficits as measured by a simple screening test.
In moderate to severe dementia, the outcome is often admission into residential care.
This is the point at which we have abandoned our patients. We have entrusted their care to the aged care system. They crossed from the domain of the state-run health care system into the domain of the Commonwealth-run aged care system. We did this with full understanding that, even in the best facilities, there is not the slightest chance that all the assessed health care needs of these patients can or will be met in this setting.
We are very proud of our health care system and proclaim it to be one of the best in the world. However, it is like the “curate’s egg”, good in parts. It is not a complete system. It does not provide continuity of care from the cradle to the grave.
Aged care in Australia is seen as capable of providing appropriate care for the elderly (however arbitrarily defined). It is accepted that there are levels of care. The most intensive level of care is high level residential care. There is no one patient in high level care who does not have at least one serious chronic disease, such as diabetes; who does not have a severe disability; and who does not have a significant cognitive impairment. Dementia is itself a chronic, progressive, disabling and distressing disease. What these people need is skilled continuing, long term and active palliative care.
Aged care is not a unitary entity. It has two distinct elements: accommodation and community support, and long term health care. We entrust it to the accommodation sector when it is clearly the responsibility of the health care system.
As the medical profession and as geriatricians and psychogeriatricians, we have failed to expose this intolerable situation and in our ethical clinical obligations to the patients with whom we entered a doctor–patient relationship.
A major obstacle is the Commonwealth–state divide. As I have often pointed out (here, here and here), the role of the Commonwealth should be that of funder, while the states should be the providers — something that they do far better than the Commonwealth. Only then will we have a seamless health care system capable of providing whatever level of health care is needed from the cradle to the grave.
I will be making submissions to the Royal Commission, but to date, I seem to have been a lone voice in the wilderness. I hope that I have at the very least provoked a response that goes beyond indignation.
Dr Ludomyr Mykyta AM is a consultant geriatrician based in South Australia.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless that is so stated.
I couldn’t agree more about the quality of assessments for dementia. All my 40 years as a geriatrician, I have worked with a Community Dementia Nurse, who sees the family and asks all the potentially embarrassing questions about delusions, hallucinations, behaviour and personality change and capacity, especially regarding driving. This is essential to avoid family disharmony, diminishing the self-esteem of the PWD but at the same time ensuring that a complete picture is obtained of the illness. The Nurse then provides on going support for the PWD, carer and family.
Unfortunately, no level of government has funded these nurses. I believe now that they would be best placed.within Primary Care, using the geriatrician as a consultative resources
Strong points are made in the article. “Dementia is itself a chronic, progressive, disabling and distressing disease. What these people need is skilled continuing, long term and active palliative care.”
We doctors have let down everyone in the community if we continue to act as though dementia is only a disorder of cognition, of memory, of behaviour, of coping, of higher functions–the loss of ability to live independently. So many dementia information websites gloss over the end-stage of dementia. But end-stage dementia is a disease state just as worthy of palliative care support as is end-stage cancer.
Dementia is a progressive neurodegenerative disease that is eventually fatal, like motor neurone disease, or prion diseases. In end-stage dementia there can be severe global motor deficits, inability to swalow, disabling levels of autonomic dysfunction, dysphasia, aphasia, and a type of quadriplegia that is categorised under the ICD-10 as “functional quadriplegia”. That definition could be challenged on the grounds that in advanced dementia, there is physical damage to the brain at a cellular level.
Many people believe that going into a RACF causes the progressive neurodegeneration of dementia. However the pathophysiology of dementia itself is a neurodegenerative and eventually fatal illness in any surroundings. This is not widely understood.
“Aged care is not a unitary entity. It has two distinct elements: accommodation and community support, and long term health care. We entrust it to the accommodation sector when it is clearly the responsibility of the health care system.”
This statement is crucial to the major issues in funding shortfalls for residential aged care. The funding, the skilled staffing of a heath care setting is not mandated. It is as though a family sedan has been requested to turn into a sports car.
There’s a sign in the staff toilet at our local nursing home, “Our residents don’t live in our workplace- we work in their home” There is also a urine concentration colour chart to remind dehydrated staff to drink enough water. It’s a caring touch, as staff are very busy providing personal and nursing care, run off their feet, they may not drink enough water to avoid dehydration.
Lu, insightful commentary, with which I fully agree. Seeing patients in their own environment is important but seldom practical for a specialist in private practice; I’m a retired physician and can remember a mere handful of occasions during my practice. I rue the decline in home visits at the primary care level, an adverse result of profit-driven corporates.
In reply to anonymous No. 2. I am the oldest continuously practicing Geriatrician in Australia. I have always seen people in all settings including home and Aged Care Facilities. I treat all patients exactly the same way in each setting. I am very aware of the difficulties that caring GPs face and I have always argued that Primary Care is the most important element of Health Care.
I suspect that I have visited hundreds if not thousands more Aged Care Facilities than Anonymous No.2. My last visits were last week in a country town. Many caring GPs could attest to the advice I have provided to them.
What of these pleas:
“Yes, from when they were small and into adulthood, I have spoken to my children about what I want in my older years should I become ill … they promised I would always live in my home and they would take care of me there in illness and old age – such has it been with all our family. My daughter, who had moved back into my home, packed my bag and
led me out of my own home, drove me to an aged care facility and left me there never to return to my home, my beloved home – the place that is mine to be on this earth. I plead looking into her eyes saying again and again, “Home”. “Home”.
“I want my privacy, my own bed, to sit on my comfy chair, feel my fluffy sheets in my own bed. I’m angry, frustrated, afraid, powerless – I tell them the only way I know how. I yell,I flay my arms, I scream. They choose to not understand. The doctor says I’m psychotic and wants to prescribe Risperidone – does he know what that can do to me? Or doesn’t he care as long as it keeps me seated, keeps me silent? I’m not psychotic, I am just telling you in my own way what I want and what I don’t want. The money’s there in the equity in my home to take care of me so I can live the life I want.”
“When I’m happy, or sad, I clap my hands for a few seconds and say out loud, ‘Ahhhh’. They don’t like that. I’ve always walked, never had a car. I like walking in the garden. They don’t like that either. I swallow. The pill goes down. I don’t walk any more, or clap my hands. I can’t talk any more, not even ‘Ahhhh’.”
“My brain is just another body part. Would you treat me as you do if I lost the use of my arms, my legs, my kidneys, my eyes, my hearing? So don’t make me suffer even more and treat me as if I’m gone. I am me and I’m here.”
“I want to go home. I weep silently. I ask and ask until in the end I know you won’t let me will you?”
“Do you not see my family wants our home, our money – they think it’s theirs. I no longer have specialist care – they say it costs too much; but it’s our money. It’s us who have worked so hard to get what we have to live the life we want and desire? Will you help us, protect us so we can live our life, not the life they make us live?”
“I stare. My fingers are stiff. I forget to chew now. I see her; she cuddles me, holds me; she can’t take me home with her, she’s not allowed; her eyes are wet. Soup. She puts a spoonful in my mouth. I hold it in my mouth. She tickles my cheek with her finger. I swallow. One word. One word, “Beautiful”, I say and our eyes bathe in each other’s love. She
leaves. I lay me down to rest now. My heart beats no more.
Extracts: Submission_965_-_Bourne_and_Associates.pdf”. ‘End of Life Choices’ submission to the inquiry by the Parliament of Victoria, 2015.
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You are not a lone voice in the wilderness Dr Mykta, our voice is there too.
Read our submission to the Australian Productivity Commission, ‘Eat Bananas. Identity Abuse in the Care of Older Australians’. Bourne and Associates, 2010.
AGENDA FOR CHANGE
Whatever the effort to address the above, it is necessary to undertake, for to do otherwise is to diminish us all as it stands at the core of humanity and civil liberty.
There are many areas that we believe need to be changed in policies and processes for an ageing group that is expanding with new needs emerging (‘baby boomers’):
• In how they are treated and in how their needs met ncluding general well-being.
• In how the law deals with their rights.
• Medical practice and drug adminstration.
• In the quality of services to meet their individual needs, wants and desires within their homes and elsewhere.
We are commited to bring about these changes, so we can each be all we are for all our days, even when we have no voice.
Many areas need to be changed in policies and processes for an ageing group that is expanding with new needs emerging (‘baby boomers’):
1. Change our mindset – Identity abuse
• We are working to add ‘Identity Abuse’ to the existing list of abuses in Australia and at international level including the United Nations, so peoples globally may benefit.
2. Judicial, administrative, legislative
These cover areas such as:
• Particularly focusing on enduring Guardianship, Powers of Attorney (financial, legal, and medical) as well as matters concerning privacy and informed consent ie when a person has capacity/ does not have capacity.
• Changing the current policy of VCAT that withdraws proceedings when the person dies before the matters are concluded ie matters that are not resolved and have implications other than for the deceased.
3. Medical
• These cover areas such as:
• Remove antipsychotics such as Haloperidol or Risperidone from the current range of drugs administered to control behaviour when there is no psychosis in dementia and Alzheimer’s Disease patients.
• Reporting ie Australian Health Practitioner Regulation Agency (AHPRA).
• Relationship between GPs and specialists.
• Continuity of care – Medical/agency staff within care facilities and the relationship to GPs and specialists’ treatments and medication including on-going and up-to-date knowledge of drugs – their applicability, side-effects and monitoring.
4. Workforce requirements
Advocate, and where possible, deliver:
• Upgrade quality education and training in both home and supported care at every level from carers to GPs and specialists from basic to advanced courses – life-long learning.
• Increase number of specialists – psychiatrists, geriatricians, psychogeriatricians and neurologists.
• Create a program to attract under-graduate medical students to the aforementioned specialist practices.
5. Well-being
• Provide living environments in which an individual’s preferences are delivered to meet his/her life style and life choices from living spaces, food, music, clothing, activities, furnishings and more.
6. Communication inventory
• For those, who due to illness or injury, cannot voice their needs, wants and desires, we advise that an inventory be designed to document his/her choices and that it be used to direct management. The inventory is to be a legal document to be delivered and sustained for whole-of-life such as at an appropriate time this can be referenced within a likely prognosis for future need for care such as a diagnosis of Alzheimer’s Disease.
Having spent many years working in aged care facilities all the above points are valid although perhaps the geriatrician has forgotten about the GP’s who still do the majority of the medical care in the homes. We now work in an environment driven firstly by profit and secondly by accreditation. As so often happens a process which brought about so many good changes into these facilities is now a self serving organisation which seems to govern these facilities by demanding more paper work and more hoops to jump through. Some of these practices are now interfering in patient care . They have no right to direct facilities to organize referrals to geriatricians , psycho geriatricians without discussing the issue with the GP and patient in the first place as to whether it is required or warranted.
However all of this doesn’t touch on the true issue which is the nursing standards in these homes. As mentioned above these people have complex needs and require a high level of medical knowledge and understanding of their problems. How can we expect nurses straight out from their degree who for some reason are registered nurses with no in hospital “internship” year to manage what is required. No nurse should be registered without this essential training. Churning nurses out of universities without enough places in hospitals for this further training should not be allowed. So where do these young people go but into the aged care homes. We have gone from nurses training in hospitals where their practical skills were excellent, to a uni degree where their skills have never truly been developed. They are not safe and they know it of course but cant get other work. Therefore the system denigrates to protocols in which they tick boxes. The knowledge of what that means is not present at all. So as mentioned before the system has based itself on accommodation which has improved considerably but what of their medical care which is the reason that they are there.
The staffing crisis in aged care for doctors and nurses alike needs to be urgently reviewed or we will never move forward.
Medical practitioners did not desert the elderly – the nursing home administrators, nursing staff, relatives and Medicare are much more accountable. Years ago when working as a locum tenons I was at the nursing home at 7.00 am before going to the practice then back there after dinner that night frequently. No office to see patients and nursing staff variously ignored me (makes me wonder about patient safety at night in hindsight) but above all Medicare cut the fee for all with every visit. No IT as well.
Whereas it is easy to dismiss for-profit nursing homes as a money making scam hence no services, non-profit nursing homes fare no better in terms of support for medical practitioners and have reaped as they has sown. They failed to show respect for us because the old-school doctors were prepared to go through high water and heck for their patients. When you are a locum you obviously don’t have the detailed knowledge and history (hence the need for computerised records and capacity to bill on the spot (tomorrow is another hectic day!).