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.