The following is a comment I made in MJA Insight on July 8th 2019 as part of a discussion about Rural General Practice:
‘Describing the Australian Healthcare System as a system is an oxymoron. What passes for a system, structures, the processes, and the hierarchies have never evolved beyond its 19th-century origins.
In the present day, the most important level is Primary Care, and the most important practitioner is the Primary Care Physician/General Practitioner.
In the early 1970s, when I first arrived in England to learn Geriatric Medicine I had to work as a locum in London so that my family and I could survive before I found my first hospital appointment. In the course of that time as a locum I did stints in General Practice, Hospital A&E Departments, and even as a Consultant in Outpatient Departments of some of the great hospitals.
Having spent a year in general practice in Australia, I found London Metropolitan general practice an nightmare. 10 minutes were allocated for a “consultation”. It took me some time to learn that I was not expected to take histories, examine people, and reach medical diagnoses. I was there to provide sickness certificates, write prescriptions, and refer anything else to A&E at the nearest hospital.
When I was the locum RMO or registrar in said hospital, I was extremely busy dealing with referrals consisting of only a few words: “abdominal pain… Headache” et cetera. When I became the registrar at the Nunnery Fields Hospital in Canterbury, I met real general practitioners for the first time.
What reminds me of this experience from the past, is that this is where Primary Care is heading in Australia.
We have better models and examples to follow. I find that the best quality General Practice, and the best Aged Care is to be found in one-practice country towns. This is a credit to those general practitioners and not the system, which fails to recognise the value that we are getting for a pittance, while we pay proceduralists and super specialists generously for only being very good at one thing.
I must hasten to add, that I would not be alive today without the quality care that I have received from super-specialists and proceduralists. The workman is worthy of his hire, and we heap great responsibility and unreasonable expectations on general practitioners in many areas while failing to value their input equitably.
In discussing the quality of the healthcare provided in residential facilities with some of the NGOs, they have been offended by my remarks and have pointed out that they provide high-quality healthcare. None of them have been able to show me where the general practitioner appears on the organisational chart.’
I recently met a young man who had just been appointed to a senior administrative position with a Management Company that runs many General Practices across Australia.
The business model is now the dominant and unquestionable favourite in running the Health Industry and the Aged Care Industry. It justifies and rationalises managerialism, and the leadership of human services by lay administrators in heading Health and Welfare Services and other human services. The flowery rhetoric about Mission Statements does not hide the reality that the Budget determines what services will be provided.
Look around. In rural South Australia, where I practice, services will only be introduced and supported if they attract a fee.
When I drive towards the airport, I can’t help noticing the flashy new buildings going up on very expensive land, housing the administrations of several NGOs that deliver the trickle-down services of My Aged Care to desperate elderly people.
There used to be an alternative in South Australia. The Regional Domiciliary Care and Rehabilitation Services emanating from regional hospitals provided very comprehensive home-based support and rehabilitation services for thousands of people in a timely manner, urgently where needed, for a pittance. We were salaried Public servants. All the necessary infra-structures were already in place and did not need to be duplicated. We were regularly audited and subject to the same accreditation standards as our parent hospitals.
It is very North American and neo-Conservatist (USA, not Canada) to ignore the contribution that Public Services (“Western European Socialism”) can make. USA’s poor ranking in the delivery of Health and Welfare Services among the OECD nations should make our political leaders use their brains.
This is my latest contribution published in the MJA InSight on 15 April 2019.
Following on from his recent article, Ludomyr Mykyta reviews the Royal Commission into Aged Care Quality and Safety so far.
It is beginning to look like the Royal Commission into Aged Care is heading the same way as other recent high-level reviews of elements of aged care: accept the status quo as a given and tweak the process with tighter accreditation and increased contact hours with trained staff.
Peak bodies such as the Australian and New Zealand Society for Geriatric Medicine — an organisation of which I am a co-founder and past president — tacitly accept the structures and systems as appropriate. There is a failure, or a deliberate refusal, to see the elephants in the room.
The first of these elephants is that high-level residential care is a level of healthcare, not an accommodation option. As I have said before:
“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.”
One wonders when, how, and why the Minister for Aged Care (currently Hon Ken Wyatt, MP) was separated from the Minister of Health (currently Hon Greg Hunt, MP). This separation reflects the disconnect between aged care and the sector to which we have entrusted it.
The standards of care that must be met in residential aged care facilities are set by the Australian Council on Healthcare Standards. Enforcement of these standards is impossible when the facilities are not within the health sector. It is instructive to observe that non-government organisations and businesses run private hospitals and meet relevant standards.
Also, under the current arrangements it is difficult — if not impossible — to achieve proper medical attention for residents in aged care facilities for many reasons, including the lack of incentives for general practitioners to take a leading role in the management of residents. I can think of several ways that this could be achieved, but the Commonwealth — as the funder of primary health care — is out of its depth, as I will now explain further.
The larger elephant in the room is the Commonwealth. My Aged Care is nothing short of appalling. It is poorly conceived and even more poorly managed. The designers and managers have no understanding of the issues that confront the “client” and the client’s partner and family. Navigating My Aged Care is a mighty challenge — even for those family members who are not suffering from cognitive decline.
Anyone with experience dealing with people suffering from dementia will understand that it is often very difficult to persuade these people, particularly as they progressively lose their insight (the capacity to understand their current situation), to agree to accept assistance, and even to be assessed by someone like me, with expertise. They know what they want and don’t want, but they may lose understanding of what they need. Often, there is reluctant acceptance during a time of crisis, but by this time, the service sought is overdue.
According to the latest Home Care Packages Report the waiting time for people who have been assessed by Aged Care Assessment Teams as being qualified for a package is over 12 months. I wonder how many people die while waiting for their Level 3 or 4 aged care package to commence?
I am focusing on aged care. However, everything that I am saying applies equally to the whole Australian healthcare system. The States do it better than the Commonwealth. It is appropriate that the Commonwealth is the funder and has the responsibility to distribute funds equitably through the States, but my belief is that the Commonwealth has, up until now, been an incompetent provider.
It does not seem to me that the Royal Commission into Aged Care Quality and Safety has come close to tackling these bigger issues.
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
While listening to the BBC in the small hours, which is my wont, in a program explaining why the public believes blatant lying by politicians, an expert in rhetoric offered a persuasive explanation.
As soon as I completed my morning ritual (exercise, shower, my first cup of coffee) I looked up Rhetoric in Wikipedia a very good starting point with any new topic, and discovered a paper on “Rhetoric of health and medicine”. What an eye opener!
I also understood the power of catchy slogans and mantra, so here is one of my own:
High level aged care is HEALTH CARE!.
Simple message. Pity that no politician seems to understand it.
And so on a linked theme, here is a copy of an article I submitted to MJA InSight,
Issue 38 / 1 October 2018
Aged Care: A Geriatrician's view
THE Prime Minister’s announcement of a Royal Commission into problems besetting the aged care industry and the ABC’s recent Four Corners exposé raise my hopes that perhaps there is light at the end of the tunnel for senior Australians living in residential aged care facilities.
However, a great deal will depend on the terms of reference of the Royal Commission. I have been practicing as a specialist geriatrician for 45 years. Throughout that time and up to last week, I have undertaken home visits and visited residents in aged care facilities. I treat all patients identically, irrespective of the setting, at hospitals, clinics, private rooms, homes and residential facilities.
Throughout that time, I have participated in and contributed to numerous high-level enquiries at federal, state, regional and local level. All begin with assumptions and a starting position and methodology that often leads to what amounts to tinkering with the status quo rather than major change. Royal Commissions take a very long time.
In Australia, governments deal with difficult social problems by creating amorphous groups, such as “the aged” and “the disabled”, or equally amorphous issues, such as “aged care” and “mental health”, ostensibly to give them special attention and oversight by a Minister.
This results in the creation of minority groups that are vulnerable to discrimination and exploitation. The special group’s access to mainstream services and institutions is then only through “special services”, which act as a barrier when they should have the same access as any other citizen.
A major complication in this case is that residential facilities are outside the state health services arena, and services emanating from state hospitals, clinics, and community health services do not extend to residential facilities at all. State-employed geriatricians and psychiatrists do not visit residential facilities as part of their service obligation (not that home visiting is particularly common in this day and age), whereas they would visit state-run long-term care facilities as a matter of course.
We seem to accept that aged care in its entirety is the rightful domain of the aged care industry (the starting position), even though entry into high level residential care is limited to people with enough physical, cognitive and mental impairment and disability to warrant this level of care.
I contend that high level care is a level of health care. It is not an accommodation option that anyone can choose as a lifestyle. It is long term, continuing and palliative health care. The qualifications of carers and the carer time that it takes to provide this level of care is obvious and predictable.
High level care is the most complex and demanding level of long-term and continuing care. It is not passive warehousing. It must actively include prevention, treatment, rehabilitation and palliative care.
The gross failure of the system and the incapacity of the aged care industry to provide an even remotely adequate level of continuing and palliative care has resulted in all the horrendous instances of personal abuse and mismanagement that the Four Corners episodes have brought to public attention. The current providers of aged care may be able to run a hotel, but they are completely unable to run a hospital.
If Oakden nursing home in South Australia had been a mental health unit, as the sign over the front door implied (“Mental health services for older persons”) and had faced health unit accreditation, and if the Mental Health Service had met its ethical and legal obligations regarding duty of care, we would never have heard of Oakden.
Long before Oakden there were long-stay facilities managed by the state’s mental health service. They were called Makk House and McLeay House, and they provided a valuable service in dealing with behaviourally disturbed and difficult to place people. They were fully staffed by trained nurses, medical officers, and psychiatrists. For purely financial reasons (Commonwealth government funding), they became the Makk and McLeay Nursing Home at Oakden. The rest, as they say, is history.
When the Oakden Report Response Plan Oversight Committee report of July 2018 is implemented, in South Australia, at least, an important element of high level residential care will be properly provided.
Just as Oakden had a capable and effective ancestor, so did general long-term care. In the 1970s, I was the visiting specialist responsible for half of the long-stay wards of the Royal Adelaide Hospital at the Hampstead Centre. Again, they were properly staffed with access to all necessary specialist nursing and allied health professional expertise. The funding was from the state budget.
In the 1990s and early 2000s, the network of domiciliary care and rehabilitation services that covered the whole metropolitan area of Adelaide and had outreach into rural and remote communities provided a very comprehensive home-based service for many thousands of people that makes My Aged Care look like amateur hour. They did not survive a series of very expensive reforms.
Perhaps the saddest thing about this tragedy is that relatives have had to endure the anguish of finding out that the people, to whom they had entrusted the care of helpless people that they loved, had perpetrated callous abuse on them. They discovered this through very indirect means and had enormous difficulty having their concerns heard by anyone in authority. The Four Corners exposé will have raised alarm in other unsuspecting and already guilty relatives because “they put mother in a nursing home”.
Many of these relatives were legally substitute decision makers, who were not only entitled to information but should have been consulted when any significant care decision was made, and they had the right to agree or disagree to any proposed action. They were also advocates for and defenders of the rights of their relative. Any standards accreditation should ensure that facilities understand this point and demonstrate that they are complying with this, one of the most important standards.
All of the high level enquiries and undertakings that followed the Oakden disaster have resulted in no significant change. It will be business as usual, just with more rigorous standards assessment and a few more hours of clinical time.
I will end on a positive note.
Most of the facilities that I visit provide good quality care because the nurses, allied health professionals, and base-grade carers are decent dedicated people. Most of my working life is in rural and remote South Australia. The quality of residential care in rural towns is very much better, in every way, than in the metropolitan area. Country towns have true community spirit. An old person admitted to the local aged care facility has a history and understanding in that community, they may have been a teacher, a friend’s parent, the person who delivered Meals on Wheels. The people working in the facility in all capacities are mostly local people. The GP that was looking after them in the community and looked after them at the local hospital will continue to look after them at the nursing home. That GP will treat them with the same care and respect that they always have. The practice cared for them when they were born, and will continue to care for them as they die. Perpetrators of poor standards or abuse would be answerable to the whole town.
I can confidently counsel partners and relatives that when somebody needs 24-hour care, entry into high level care is not an abandonment nor a condemnation to a living hell.
I could go on and on. Anyone interested in greater detail can find it in my book, Dementia is different, available through my website.
Recently my wife and I had dinner with two very dear friends that we have known for many years. They are sisters who have been providing their ancient father who has advanced dementia with total care for several years. One sister moved in with him. The other sister lives overseas where she has an extended family and comes to her old home regularly to give her sister respite. I had given them copies of my book, and they commented on my views on the need of expert continuing health and palliative care for sufferers of dementia until the end of life wherever they may be. They told me that some time ago they had approached the Regional Palliative Care Service for assistance, which was refused on the grounds that, “he was not palliative”. This is the routine response in such circumstances.
I have had an interest in palliative care for most of my working life. When I trained as a geriatrician in England in the early 1970s I took the opportunity to visit St Christopher’s Hospice in London where I met the great Dame Cicely Saunders. This left a lasting impression of what palliative care could and should be. It is above all a humane philosophy that can be applied in any setting.
While I was the Director of Geriatrics at the Queen Elizabeth Hospital, and concurrently Clinical Director and Executive Officer of the Western Domiciliary Care and Rehabilitation Service, in the Western Region of Adelaide, we developed a network and powerful lobby group made up of people and agencies involved in Aged Care, Rehabilitation, and Community Health. In the early 2000’s we formed a working party to promote Palliative Care which we saw as needed in every corner of our region. We were successful in persuading the Health Minister of the day to fund Hospice beds in a new nursing home opened by an NGO and that was an active participant in our network. With the advent of the funds, the Palliative Care Service was taken over by the hospital Haematology and Oncology Department and our hopes of a comprehensive community-based palliative care service failed to come to fruition.
I attach a PowerPoint presentation that I have made to many groups over the years. Sadly, the deficiencies that are highlighted continue to be relevant to this day.
Aged Care in Australia is a sham. It is an element of healthcare, and residential care should be primarily a level of care, not just an accommodation option.
In Australia, and most Western nations, particularly the English-speaking ones, we have turned individualism and the “right to autonomy” into unquestionable dogma of religious proportions, irrespective of context or any other consideration.
In my book I posit that the most important element of context is the relationships that we are in. The most important relationship is with our life partner. Furthermore, dementia afflicts both participants in that relationship. It does not just happen to an individual like measles, a broken arm, or being run over by a truck.
I believe that forming a lasting relationship with a life partner is the most fundamental human need, and consequently should be a human right. My contribution to the political debate on Marriage Equality in Australia last year is also posted here.
In the book I give several examples where the legally enforced “right to make autonomous decisions” led to great harm and distress for both partners.
I recently heard about the intended appointment of a Minister for Loneliness in the UK early this year. This followed the release of the report of The Jo Cox Commission on Loneliness. Jo Cox was a socially activist politician who was murdered by a right-wing extremist in 2016.
The data cited in the report is obviously from several sources. Age UK sites similar information and more detailed information. The following items are examples:
None of this comes as a surprise to me because I learn all this from both “the patient” and the partner when I conduct an initial assessment in any and every setting.
It is difficult to understand how the obsession with Individualism and Autonomy, and its political equivalent Self-Interest and Isolationism continues to hold sway. Can it be that it may have something to do with the appeal to Populism?
September is Dementia Awareness Month in Australia. I have devoted many years of my very long clinical career to the care of people afflicted with dementia.
In advanced dementia, we are confronted with the bare rudiments of human existence. In Western societies we have been seduced by the philosophy of individualism, and have made a religion of autonomy as the prime ethical principle, and the most important human right.
In late dementia, the capacity for autonomous decision-making in any context is long past. What then is the purpose of continuing to live? How do we define Quality of Life as distinct from quality of care?
Our obsession with individualism, and thinking of dementia is analogous to any other illness blinds us to the glaringly obvious. Dementia is an ailment that affects a relationship. When all else is lost, what remains is the most fundamental relationship with the life partner, a close relative, a dear friend. That is the most precious asset. Those afflicted by the pathology of dementia have no desire to seek fulfilment. What gives meaning to their life is the fact that someone continues to love and need them. Quality comes from contact with that person. It is a deeply ingrained need. I have seen hundreds if not thousands of situations where there seems to be no cognitive capacity to be aware of the life partner, but it happens.
I believe that the need to form lasting relationships is a biological imperative. In evolutionary terms, and animal species capable of forming lasting relationships had a huge advantage over species that could not. A lasting relationship meant that the young would not only be borne, but would be nurtured as they developed to adulthood. The ability to form groups capable of harmonious and mutually productive relationships enabled the species to prosper and to present a united, cooperative front to adversaries. With the development of the forebrain, human beings had the capacity to perform harmonious relationships at the individual and at the societal level. These capacities included such attributes as empathy and compassion. The development of language gave us a powerful instrument for learning, reasoning, problem-solving, learning from our mistakes, and taking consequences into account when making important decisions.
Ethics, morality, and religious teaching and dogma are essentially rules for living in harmony within our relationships, societies, and beyond.
I believe that forming a lasting relationship with a life partner is the most fundamental human need, and consequently should be a human right.
The debate on same-sex marriage should be seen from this perspective. I have seen same-sex couples literally “battling with dementia” afraid to reveal the true nature of their relationship and knowing that their relationship would never carry the same rights and benefits as a legally recognised marriage/civil union.
Humanity is very diverse, and however we label the boxes, there will always be people who will not fit. To judge them raises questions about our own humanity, and our capacity for empathy and compassion.
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.