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. There is tweaking round the edges and high-sounding cosmetic changes that have no impact on the fundamental causes of the issues. The focus is on processes and practices within a structure and a system that is taken as a given, the status quo that remains unquestioned. This is 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 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 sub- specialties 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 to recognise the underlying causes of the situation at the systemic level and use our lobbying power to demand real reform. We have behaved as academically aloof bystanders. The only evidence that we responded to was critiques of the misuse of anti-psychotic medication in residential facilities. We responded with guidelines and never questioned the credentials of the authors of these critiques that now dominate the approach to the management of disturbed behaviour. Let’s it make it personal. We cannot deny that the atrocities were committed on our patients, on our watch, under our banner: There was a large sign at Oakden proclaiming that it was run by the Mental Health Services for Older Persons.
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.
The ethical principles that we include in our Australian Codes of conduct are based on the very influential textbook “Principles of Biomedical Ethics” by Beauchamp and Childress. They posit that modern bioethics is based on four fundamental and two derived principles.
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 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/caring friend.
I contend that the routine and deliberate conduct of initial specialist assessments of elderly people suspected of suffering from 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 because critically important decisions and actions are based on incomplete and poor-quality information/evidence.
In so doing we, 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); Working Age (Aged 15-64); Aged People (Aged 65+). 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 over 65 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.
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 (RN). Ethel was accompanied by her husband Fred and daughter Betty. Country Mental Health Worker, Fred 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 her concerns, needs and wishes confidentially to the assessing clinician. Furthermore, it puts her under duress in that it greatly limits what she can openly say in front of the people present, including her family.
It also puts the partner and relatives under similar duress, so that very important in formation 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 from the partner and relatives.
In my experience it is quite rare for the patient to trigger the GP referral. 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 and 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/consultants we are being asked for an expert opinion by a referring general practitioner.
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 medicolegal implications in every assessment. When questions of mental capacity and breaches of our ethical and professional obligations are so highly probable that we cannot expect the admonition to be honoured. 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 RCT. A major difference between conducting an RCT 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.
We start from the assumption that because we have completed a training course in Geriatric Medicine or Psychogeriatrics, we emerge as immediate experts. The application of knowledge without relevant experience is simply dogma.
The Australian Law Reform Commission report of December 2005 titled “Uniform Evidence Law” dealt with the definition, conduct and requirements of an expert and identified several key points that from my reading are common to at least the English-speaking nations such as the United States and the UK. All the States have similar relevant legislation, rules and guidelines.
An expert must have a level of education, training, skills, and experience, that is beyond that of an ordinary practitioner in the field. In some jurisdictions, length of relevant experience, such as 10 years is specified, as is the acceptance as an opinion leader by peers. Together, these qualities form the credentials that are listed at the beginning of a legal expert opinion.
Furthermore, the expert must disclose the facts or assumptions (the reasoning and the evidence) upon which his opinion is based. Those facts and assumptions must be compatible with the current scientific state of knowledge in the field, and credible and persuasive in objective scrutiny if challenged.
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 use the No-touch technique. A mental health worker armed with generic lists and questionnaires 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 her. 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.
The assessor must recognise a crisis and the sense of urgency from the perspective of the patient’s partner/relatives. Simply put, we must be seen as trustworthy and capable of empathy and compassion. We must also show that the relationship that we form does not begin and end with this consultation but continues indefinitely.
The assessor or must recognise distress. Many of the manifestations grouped under the heading of BPSDs (The Behavioural and Psychological Symptoms of Dementia) such as delusional beliefs, anxiety, and depression are sources of distress for the patient and direct contributors to the behavioural problems faced in residential care. There is a tendency to see them as complications late in the disease, whereas they are common manifestations that can be found early in the presentation if properly looked for.
The personality changes resulting from frontal lobe damage, the loss of insight and decision-making capacity should be objectively looked for.
In moderate to severe dementia, the outcome is often admission into residential care. This is the point at which we abandon our patients. We entrust their care to the Aged Care System. They cross from the domain of the State-run healthcare system into the domain of the Commonwealth run aged care system. We do this with full understanding that in even 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 Healthcare 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. When I visit country towns, I get a glimpse of just such a system. The local general practice provides the care that is needed in all situations and at every age.
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 in high level care who does not have at least one serious chronic disease, such as diabetes… who is not severely disabled… 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 Healthcare 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, 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 healthcare system capable of providing whatever level of healthcare 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.
 Beauchamp TL, Childress J F "Principles of biomedical ethics". (2nd edition). Oxford University Press, New York, Oxford 1983
 In 2018 I completed over 270 assessments. I am currently analysing the data.
 In my monthly assessment visits to a large country town in 2018 I undertook 64 Home Visits; 13 Aged Care Facility Visits; 18 Hospital visits; and saw 12 outpatients from neighbouring towns.
 LJ Mykyta “The Oakden Disaster: some unanswered questions” MJA-InSight, Issue 47 Dec 2017
 LJ Mykyta “Aged Care: A geriatrician’s view” MJA InSight Issue 38 1Oct 2018
 Mykyta, Ludomyr (2018) Dementia is Different Australian Scholarly Publishing Pty Ltd Chap4 pp118-155
Dr Mykyta was appointed as a Member of the Order of Australia for services to Geriatric Medicine and medical education in 2012. He has practised medicine for over 50 years and still travels all over South Australia seeing patients. He has treated close to 10,000 patients with Dementia.