LIKE many people who had been enjoying a bit of light relief on the evening of 22 June 2020, I found myself struggling to try to reconcile the latest episode of “reality TV” MasterChef Australia with the reality of the story of COVID-19 in the Newmarch House residential aged care facility when we switched over to watch the ABC Four Corners documentary Like the Plague.

Before I go on, it is very important that any observations on Like the Plague must reflect the context of the moment. Between March and May 2020, when the events described took place in New South Wales, the pandemic was growing rapidly and the predictions of disruption to the health system were very worrying, little was known about the virus, and we were watching with horror the outcomes in Italy, Iran, the UK and the US.

After watching Like the Plague a second time, like many others I came away with a number of questions from a program that was based predominantly on comments and interviews from the family members of some of those who died in Newmarch House. Several months on, many of the higher-level issues have not been addressed, even by the Independent Inquiry into Newmarch House.

First, the observations on Like the Plague that I recorded at the time:

The program was founded on a storyline of multiple deaths in the context of poor or non-existent communication about a range of issues that are core business for the delivery of health care:

  • The patients’ families believed that a decision had been made not to admit to hospital any residents from Newmarch House with COVID-19. Four Corners did not report whether or not such a decision had been made.
  • Families were told that their relatives who were not transferred from Newmarch House would receive the same quality of treatment and care (short of ventilation etc) that they would have received in hospital. Clearly, that level of care and treatment did not eventuate.
  • The families of Newmarch House residents also seemed to believe that at least some patients had been subjected to a process of what they called Advance Care Planning (ACP) that changed the patients’ previously expressed choices that they have all available treatment. The program did not ascertain if this had happened or how such choices were determined or documented.
  • Families were generally restricted from seeing or visiting their sick relatives, and were most distressed when not kept informed of their health and clinical progress in a timely manner.

At the time, the dearth of open disclosure of the full extent of the circumstances in Newmarch House, the decisions that were made and the basis upon which actions and inactions were founded, left the door wide open for speculation and rumour. I believe that our community respects the need to make difficult decisions but only if not shrouded in a cloak of secrecy.

Just last week the Commonwealth released the findings of the Newmarch House COVID-19 Outbreak Independent Review – Final Report; and, simultaneously, the state response: NSW Health response to final report of the independent review into the Newmarch House COVID-19 outbreak.

The scope of the Independent Review was limited to the events in Newmarch House and little mention was made of the context of the pandemic or the role of NSW Health and the Commonwealth.

The NSW Health response to the Review defends the actions of NSW Health and describes subsequent actions taken based on what NSW Health learned from the events in Newmarch House. It states that: “Hospital care was always available, and is always available, to residents who require more complex clinical support and want to be transferred to an inpatient setting”, and notes that a number of patients were admitted to hospital.

Neither addressed the broader issues of national and statewide preparedness and responses for the challenges that would inevitably emerge in the event that multiple facilities were affected at the same time. There was no mention in either document of the benefits of ACP, or the need for triage and ceilings of care in the event that our health services were overwhelmed by large numbers of very sick people, as had been experienced elsewhere.

They did not report whether fears that hospitals might be overwhelmed were explored by either the NSW Health or the Commonwealth – it would seem to have been a dereliction of duty not to have at least considered and planned for that possibility.

I think that there is a back-story to the dearth of information that has undermined the perception of what has generally been a high-quality public health and clinical response in the context of the inescapable uncertainties and unknowns of a pandemic. In the absence of direct descriptions from governments, this is my assessment of what has been going on over the past few months:

Our leaders have been struggling with how to manage the complexities of a pandemic without publicly addressing the reality that healthcare demand might outstrip supply; that would require someone has to stand up and take responsibility for preparing us all for the not-insignificant possibility of the need to apply balanced lose-lose, or, at best, lose-win decision-making resource allocation.

We must presume that the decisions that were taken between March and May were based on epidemiologists’ well-founded predictions at the time. It seemed that we were facing an overwhelming tide of COVID-19 that would crush our health and hospital system under the weight of countless admissions of seriously ill patients and threaten the lives of essential health workers, their families and the community at large – these concerns were exacerbated by shortages of personal protection equipment. Additionally, it was feared that the hospital admission of large numbers of frail elderly patients, with or without COVID-19, could (as in Italy) restrict access for the rest of the community who would be much more likely to gain benefit from intensive treatment, either for COVID-19 or the other illnesses that keep most hospitals full all year round (here, and here).

The picture is complicated because responsibility for community and residential aged care rests with the Commonwealth and that of hospitals with the states and territories. Additionally, the pursuit of an understanding of the complexity of the pandemic is continuously distorted by the increasingly adversarial nature of party politics at all levels, our seemingly innate desire to apportion blame, the sensationalist and sometimes partisan tendencies of modern media, and fiscal tensions between the States and the Commonwealth.

It is scarcely surprising that, because we have been increasingly successful at delaying death from the illnesses that arise earlier in life, we end up with a large population of people who are old and frail with multiple comorbidities. RACFs have become the places where people live when they can no longer care for themselves in their own home and do not have family who are able to provide care for them – this being exacerbated in part by the geographical fragmentation of families. While many RACFs are able to manage the uncomplicated dying of a steady stream of frail elderly people reaching the end of their natural life, they are not designed, equipped or staffed to provide care for large numbers of people dying concurrently from complex and contagious medical syndromes.

Governments are well aware of the deterioration in the ratio of taxpayers to older persons at the end of life (that period months to many years of declining independence ending with death). In 1978 Australia had 101.4 people of traditional working age (15–64 years) [taxpayers] for every person aged 85 years or older. This decreased to 32.5 in 2018, and is expected to reach 14.6 by 2058. Concerned by the financial implications, governments have been very wary of committing to the levels of funding necessary to meet both care standards and community expectations. Equally, some in the community are reluctant to support the taxes necessary to achieve those standards, while many individual older persons (and their offspring) are reluctant to fund their own care from the accumulated resources that they are expecting will be inherited after death.

On the other side of the ledger, state-run hospitals are predominantly designed and staffed to treat a steady flow of short-term problems. Hospitals are expected and encouraged (sometimes by the Orwellian incentive of a so-called “efficiency dividend”) to maximise their throughput; however, it is important to remember from disaster theory that “efficiency is inversely related to reserve”. With many hospitals operating continuously at or near capacity, as a sort of just-in-time delivery system, there are few resources idling on the off chance of a once-in-a-while pandemic. Hospitals can accommodate a surge in one domain of health care by shrinking the provision of another. This works well for a short term localised disaster such as a cyclone, but not for an event lasting months or even years. Private hospitals are businesses, not services. In Australia there are about 60 000+ public hospital beds and 30 000+ private beds while (in 2017-2018) about 270 000 people accessed residential aged care.

More recently we have seen many of the challenges faced in NSW re-emerging in the RACFs in Victoria that have been most affected by this wave of COVID-19. It is clear that a great deal has been learned from the experience of NSW. Many of the RACFs in Victoria have mounted a far more effective response, the Commonwealth has activated the Victorian Aged Care Response Centre, and many more patients have been admitted to hospital. However, as a predictable consequence, concerns about the capacity of hospitals, and the risks to their staff have come to the fore (here, and here).

Like the Plague also raised the issue of ACP. The program implied that patients who had previously expressed a preference for life-prolonging measures were persuaded to sign off on care plans that set a ceiling on their care lower than their previous statements.

It is very important here to understand that ACP does not include persuading people to sign a document refusing treatment that they would prefer to have, from which they are likely to benefit, and is being offered to others. Decisions that are necessarily and legitimately made during a disaster about which patients will be chosen not to receive a limited resource (eg, admission to hospital for intensive treatment for COVID-19) are resource allocation choices. They should not be disguised as a patient choice so as to avoid the need for accountability and difficult public conversations. If a patient is refused treatment on the grounds of insufficient resources, that should be explained to them and also to their family if the patient consents.

Whether or not this scenario played out in Newmarch House is unclear from the evidence presented in the Four Corners program and was not addressed in the Independent Review. However, an uncorrupted and trusted system of ACP and confidence in the care provided in residential aged care is essential for the management of this pandemic, not to mention the longer term functioning of our health system in the 21st century with an ageing population and high expectations of medical technology.

The Royal Commission into Aged Care Quality and Safety has also bought into the issues of the pandemic in aged care as though they are a stand-alone problem, and applied the inquisitorial style of interrogation of our prosecutorial/adversarial legal system to civil servants; those working within a system that they did not create and for which we are all responsible. It seems rather unfair to seek to allocate blame for immediate impacts of a pandemic imposed on the consequence of decades of poorly considered responses to a problem identified by demographers 50 years ago.

Neither our aged care services nor our hospitals have been designed to cope with the scale and complexity of the COVID-19 pandemic. Therefore, it is scarcely surprising that they have been severely disrupted, both in Australia and elsewhere, as they are asked to respond to the unpredictable challenges of an unprecedented number of patients with an unknown disease for which they could not have been prepared.

The Commonwealth/state responsibility split is an artificial divide that simply encourages the political tendency to blame-shift but does not recognise that, for patients, the goal is to be able to move seamlessly from one to the other as needed on clinical grounds. Blame-finding for a subsection of the response to a disaster simply promotes the illusion that if each component had been managed well, all would be well.

In the light of these observations, what might be the best response?

First, I would suggest the leaders of the Commonwealth and the states and territories accept joint responsibility for all aspects of health care and openly acknowledge that, when a pandemic really takes off, there is no way that the health care needs of every person can be met as we have come to expect in the 21st century. The best outcomes emerge when health services are managed as a single complex entity, rather than a mechanism for cost-shifting.

Second, they should all acknowledge and we should accept that, while decisions made at the height of any disaster may well seem appropriate at the time, unfortunately, they may turn out to have been wrong. This pandemic is generating a hugely complex array of competing demands, fears and necessities that we see every day in the media and that must be part of the public discussion. Choosing secrecy over candour in the face of uncertainty always risks leaving a lingering sense of a cover-up, and will play out as mistrust of decision makers well into the future.

Third, our leaders should lead us in a discussion about how we can most fairly allocate limited resources if and when demand outstrips supply. My experience of conversations with a large number of people of all ages over past months and years has told me that the community already understands the need for difficult decisions and that they will be accepted because there is no alternative, even when we might be the subjects of the prioritisation.

One nonagenarian of my acquaintance recently met up (at a distance) with her RACF coresidents to talk about the plight of their lockdown. This person reported that their conclusion was:

“I think that they are trying to stop us from dying. I’m not sure that is a good idea.”

As has been discussed elsewhere (here, and here), during a major disaster such as a pandemic difficult resource allocation decisions may be made necessary and appropriate in interests of the community. Open communication at such a time helps to focus attention on the gravity of the situation and generates respect and support, perhaps even sympathy, for leaders who have to take responsibility for difficult choices, including triage.

I am pretty sure that when the history of this pandemic is written, it will be the leaders who were open, candid and inclusive who will receive the accolades.

Dr Will Cairns is a palliative medicine specialist based in Townsville.

 

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 so stated.

 


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7 thoughts on “Candour and openness: lessons from Newmarch House

  1. Sue Ieraci says:

    Michele – the very idea of Advance Care Planning is that it should happen in advance – not at the time of crisis. Ideally, this process, in the manner you have described, should occur upon entry into residential aged care, and should be reviewed as circumstances change.

  2. Dr Meredith Hinds says:

    I too watched the Four Corners program on Newmarch House with horror, and also felt that it left many questions unanswered.
    As a psychiatrist working with mainly elderly people both in private practice and in a liaison position at our local Base Hospital, I was concerned about who was making life and death decisions about the care of residents , and on what basis. i cannot speak for the Newmarch House residents, but we do know that ‘officially” over 50% of residents in RACFs have dementia (and unofficially the figure is much closer to 70-80%) and my extensive clinical experience tells me that most of these residents do not have capacity to consent to medical treatment, and would certainly not have capacity to engage in meaningful advanced care planning, particularly in the totally unforeseen context of a pandemic. Additionally, most of the residents in ACFs would have either a “person responsible”, or guardian (usually a close relative) appointed to make treatment decisions on their behalf, but it wasn’t at all clear that these people were being consulted. As others have noted, there also seemed to be no mention of the residents’ GPs (or other specialists for that matter). It did appear that blanket decisions about people’s health and quality of life were being made about residents based on where they lived ie in an ACF, rather than on the basis of clinical assessment and need, and that is very concerning, if true. I have certainly seen this happen in other clinical contexts.

  3. Annemie Beck says:

    I found this a very well thought through opinion piece and not at all adding to speculation around what happened. The big artificial divide between Federal and State funding of health care, and the added comments about family practitioners (GPs) being left outside the loop when disaster and pandemic management are involved, just add more complexity to an already complicated situation. As the author stated, the entire health care system and how it interacts with aged care, and vice versa, needs to be reevaluated and redesigned with the changed parameters of modern society. The solutions do not lie in endless inquiries or Royal commissions, but in collaborative discussion between all parties involved. Our centurions, nonagenarians, octogenarians, geriatric specialists, accommodation and care providers, family members, politicians, accountants, etc. all have to have a seat at the table and be able to have their experiences and preferences considered. I agree with the author that there are many elderly who held or still holds a lot of wisdom about the realities of life (and death). Younger generations in the roles of family members, care givers and even healthcare providers, are often the ones who struggle with the certainty that death will follow for every one of us. The youth are protected with “trigger warnings” in everything that they are presented with, from movies, news articles, etc to university lectures. In the era of high speed internet and the availability of nearly everything at the click of a button, the larger part of Western society expects instant cures and endless resources. Our (much wiser) older generations know that this is only an illusion. As hard as it is, society and all its members need to discuss and accept that dying is part of life. Only when this fact is accepted by all, can we have a meaningful conversation about end of life care and choices. With limited health resources, death may indeed come through a pandemic, or else through a natural disaster. Should this necessarily trigger an inquest into every decision that was made in difficult circumstances? I believe life would be a lot less stressful if we could just trust each other once the open conversations were had, and treasure the time we do have with our loved ones.

  4. Anonymous says:

    “…the dearth of open disclosure of the full extent of the circumstances in Newmarch House, the decisions that were made and the basis upon which actions and inactions were founded, left the door wide open for speculation and rumour.”
    Unfortunately this article continues the speculation and rumour. Nothing of fact is in the piece, only supposition and assumption – the assumption that poor care was given. Unfortunately open disclosure through a peer reviewed medical forum is currently suppressed because of the royal commission and coroners inquest. Sometimes it is better to lay an issue to rest until the facts come out, rather generating column inches that don’t contribute to patient care and only serve to increase the paranoia around this difficult area of medical care.

  5. Constance dimity Pond says:

    I do’t understand why the system has been ignoring the GPs who look after these patients, do the ACP, know the relatives etc etc.

    Of course not all GPs are familiar with all their patients as both come and go, but many GPs have long standing relationships with patients in RACF. We are also capable of delivering palliative care in the facility if there is a nurse to administer the medications. Perhaps we would like a palliative care specialist to turn to for advice, but this should be possible.

    We could be helpful, but we are not included in the discussion

  6. Stacey Masters says:

    Advance care planning typically involves a discussion about what is important to the person at the end of life, or in any situation when the person loses the capacity to articulate their wishes.

    Discussions about end of life care when there is an outbreak of COVID-19 at the facility are likely posited as a choice between artifical assistance with breathing (should the resident acquire COVID-19 and experience difficulty breathing) and being kept comfortable where they live. The often expressed wish to die with loved ones at their side is unlikely to be fulfilled.

    The choice to transfer to an environment that can provide a higher level of protection against transmission of the virus is unlikely to be available. Decisions to transfer multiple residents to hospital are made by others when there is a lack of confidence is the care provided in specific residential aged care facilities. These decisions are, by their nature, delayed.

    Thank you Will, for your insightful article.

  7. Michele says:

    I find the issue of possible abuse of Advance Care Planning concerning. When I wrote an ACP with my elderly father, he had first had a capacity assessment, and then he sat with me and a specially trained social worker and wrote a carefully thought out and legally witnessed statement of his wishes. I found it very helpful.

    I don’t see how any of that could happen in a lockdown or crisis situation. Possibly it could be done with some kind of virtual link, but certainly not without the participation of a suitable next of kin and suitably trained health professional.

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