ALMOST no one in Australia will have escaped seeing reports from Italy, the UK and the USA of unimaginable numbers of deaths, overwhelmed hospitals, emotionally drained and fearful health workers forced to make impossible decisions, and patients dying alone, quarantined from the love and support of their families, who never get to see them again. These images, although mostly still distant to us in Australia, are nonetheless a major contributor to the communal understanding of the severity of the threat of coronavirus; an understanding that underpins our willing participation in the restrictions that we have implemented so effectively.
In response to this torrent of information, coronavirus discussions have become ubiquitous in our society – whether at the dinner table among family members, during FaceTime catch-ups between friends, in virtual Zoom workplace meetings, and in the brief physically distanced encounters we have with our neighbours in the street. Some of these conversations concern our immediate lives here in Australia – how much longer will homeschooling be needed, how are we all coping with the lockdown, does everyone have enough toilet paper – and others enter a deeper level of engagement relating to economic repercussions, politics or ethics. Most of us have opinions on the many ways coronavirus is impacting or could impact our lives in the future. The following are excerpts from recent conversations within our own families.
Every evening, our family sits down for dinner during the evening news. Like many families, my children, my husband and I engage in what has now become our daily coronavirus chat. The following conversation was triggered by a television report on Sweden’s alternative mitigation strategies, and the bizarre proposal that the ingestion or intravenous injection of cleaning disinfectant could be the solution to treating [coronavirus disease 2019 (COVID-19)].
My 8-year-old child, who loves a comparative question or statement at the best of times, began this dialogue:
Son: “If someone was going to die, would you prefer it to be you or Donald Trump?”
To which I wisely replied something about that not being a very nice question, and that every life is precious and valuable and deserving of respect.
Son: “But Mum, if only one of you could be saved, should it be you or Donald Trump?”
Me: “I can’t answer that. We shouldn’t compare lives.”
Son: “But Mum, answer the question! What if you could only save one life? What if a kid had coronavirus, and a 95-year-old had coronavirus, and you could only save one of them? Which one would you choose?”
Me: “Um. Great question. Well … who would you choose?”
Son: “Hmmm. I would choose the kid. The kid has a lot more years left to live.”
Me: “Interesting answer. And what if that kid was sick and might only live until they were 25 anyway. And if the 95-year-old had lots of grandchildren like you who cared about them. Who would you choose then?”
Son: “Hmmm. I would still choose the kid. They might still have a lot of good years left. But the 95-year-old doesn’t … [long pause]… And what if you had coronavirus and Grandpa had coronavirus. Would you want to be saved or Grandpa to be saved?”
Me: “I think I would choose Grandad. I wouldn’t want to choose myself over him and he still has a lot to give.”
Son: “But maybe he would want to die before you. So maybe he would choose himself … [another long pause] … But the person who dies, would they get given anything? I mean, would they die by themselves?”
I, on the other hand, am much further along the one-way journey of life. My wife and I only needed a nod one another to confirm that we see ourselves much lower down the priority list than, say, our children or grandchildren, or indeed the children or grandchildren of our friends, or even those of people we have never met. Such values fit within the utilitarian model for difficult ethical decision making but also fulfil our biological imperative to perpetuate our genes. Both our hardwired behaviour and that encouraged by our evolved cultures are manifest in our instinct to rank our own survival as being of secondary importance to that of our offspring and of the community on which they depend.
At a convivial lunch in February, before social isolation and after COVID-19 had emerged, one of our friends suggested (without resentment or envy) that as a doctor I would be prioritised for treatment. I replied that as a 70-year-old who is not currently working as a clinician, and certainly not risking my life for my community, I did not expect to receive treatment that was different from any other 70-year-old in the event that such choices were necessary.
I cannot imagine that I would enjoy my life in old age if I thought that those years had been made available by depriving an opportunity for someone younger who might have had many more years and was grieved by a young family.
While normalising appropriate concern, these short dinner table exchanges lay bare the profound and complex ethical dilemmas facing clinicians all over the world as they respond to the COVID-19 pandemic – whether already living out clinical worst fears or preparing for the possibility that these might be realised.
Rachel’s child understands the moral duty to provide care and comfort even for those who cannot be saved, and that we should not discriminate on the basis of disability. Although it might be argued his responses were ageist, Will’s perspective affirms the child’s viewpoint.
Children have also had their own lives significantly disrupted, feel the distress and anxiety of adults, and they too watch television and hear the news. While family dinner table conversations are not all as frank and open as that between Rachel and her son, most parents will have faced difficult questions raised by their children who are reacting to the reporting of COVID-19. Even very young children know about death and that old people die (“You are old. You are going to die soon”).
The vignettes of videos and letters from children to their grandparents seen on news and current affairs programs show that children realise current restrictions are there for the most part to keep their older relatives, and those of their friends, safe and alive. Children understand the principle of fairness and respond in both direct and indirect ways to the stresses that they feel in their family and their community. As parents, grandparents and health workers, one of our roles is to allow children (and adults) to communicate their concerns and to promote open conversations in pursuit of understanding and an explanation for some of the complexity of what we are all dealing with.
Will’s conversations reflect the views of many older people whose wish is to communicate that they are at peace with their own death. Yet their attempts to discuss these views can be blocked by the fears of their relatives (and the relatives of other elders) who have not yet faced up to the reality that old people die, or addressed the normality of the grief that will emerge when their particular old people die. Many elders say that they expected health workers to broach the subject and are relieved when finally they do. Some very old and frail people who have accepted their mortality say that, for them, COVID-19 might offer an escape route from the need, or perhaps duty, to put up with an increasingly unpleasant old age propped up from death by modern technology.
Our personal stories are but two examples of the conversations that have become almost unremarkable as part of everyday life in Australian communities, and in many nations around the world. They show that we are able to understand and integrate the new realities and to construct a paradigm within which we can accept the resource-allocation decisions that must be made if our health system is to avoid being overwhelmed.
Preparation for disasters offers all those with an interest (which in a disaster is everyone) the opportunity to consider how and why decisions must be made, to set priorities, define values and design processes. Communities are much more likely to accept the necessity for intrinsically discriminatory decision making when discussions start early and are very candid about the gravity of the issues. We all need to own both the process and the outcomes of preparation that can have such an impact on all our lives.
In some places, Italy and the US for example, where planning had not been done, clinicians have had little guidance and support from the government. They have found themselves hugely distressed by having to decide which patients to treat, while also dealing with inadequate PPE, causing an increased threat to their own lives, and potentially that of their families (here, here and here). This has generated a great moral distress for health workers that is likely to play out over the remainder of their lives. Health workers in Hong Kong who cared for patients with severe acute respiratory syndrome (SARS) still have lingering issues of trust in their employers and fears for their own safety.
So how should we prepare to respond when the demand for critical health care resources begins to outstrip supply and we cannot avoid the inescapable, heart-breaking clinical decisions of resource allocation and pandemic triage?
For many years, the unanimous view of ethicists, disaster planners and commentators has been that guidelines should be available far in advance as essential generic preparation for responses to current and future pandemics and other disasters.
While a search of the disaster and triage documents produced by the Commonwealth, state and territory governments in Australia turns up quite an array of plans and instructions, it did not find any specific guidance as to how the difficult worst-case scenario resource allocation and pandemic triage decisions should be made. There are a number of references to the need for such guidance, but governments have not yet made that last step, at least not publicly.
We believe the process of developing and implementing such guidelines for Australia should be founded on the following principles:
- Governments have a duty to lead the creation of guidelines, to take responsibility for the consequences of their activation, and to be accountable for their implementation. This ensures a clear, non-biased and legally defensible process that relieves the burden of personal responsibility from individual clinicians who can then focus on providing good clinical care.
- The process of guideline development requires the inclusive and equal partnership of the communities who will be affected by these decisions and must respect the key ethical principles on which our communities operate. Ethically challenging decisions force us to make compromises in our usual standards, a responsibility that cannot be borne by clinicians alone. Overt public engagement is at the core of creating such guidelines and making them acceptable to the community as a whole. Since their purpose is to decide which patients will and will not receive potentially life-saving treatment, the final outcome must meet the community’s preferences.
- Guidelines must provide a clear means of discriminating (in the sense of choosing) between individuals so that decisions can be made across the range of severity of any shortfall in the supply of treatment, from marginal to extreme — a sliding scale of decision making to match the challenge.
- Guidelines should apply nationally to ensure equitable and consistent decision making across hospitals and across the states and territories. In the Australian context, this means that while guidelines must meet state and territory legal requirements (or vice versa), they should also reflect our unity as a nation (“We are one, and we are many”).
- Guideline development and dissemination should at all times be open and transparent to health care staff, patients, families and communities. Transparency places communities and clinicians in a position to understand and to accept the moral basis of inescapable decisions, no matter how painful.
Ultimately, governments have a responsibility to work with their community to design ways to deal with all aspects of disasters, including for health systems. This includes endorsing the guidance for making difficult decisions, and supporting the clinicians who must implement the guidance. This is summarised in the Australian and New Zealand Intensive Care Society (ANZICS) document ANZICS: guiding principles for complex decision making during pandemic COVID-19:
“ANZICS acknowledges that patients may die as a result of resource scarcity and that this situation may occur even with optimal planning and coordination. It is essential that this is publicly acknowledged, and that health care workers are supported by hospital executives and civil authorities. This support must include protection from legal and other liabilities when they have acted according to relevant endorsed practices, including jurisdictional guidelines. This guideline recognises that accountability for such outcomes extends beyond the individual clinician to include health care organisations, departments of health and government.”
Given the experience from past calamities such as the aftermath of Hurricane Katrina, contemporary descriptions of emergency departments (EDs) and intensive care units from New York and Italy, and the extensive literature that advises the development and implementation of open and transparent guidelines, any harm to clinicians due to inadequate guidance for decision making is likely to become a workplace health and safety issue. This has been highlighted by the recent suicide of an ED doctor from New York and also in an article last week in InSight+ by Singh and Longstaff:
“This gives rise to a ‘social contract’ between society and health care workers, with obligations on both sides; for example, that health care workers have a prima facie obligation to offer treatment to the sick and injured from within society. However, society has a prima facie obligation to provide a safe workplace.”
Perhaps Australia does not already have these essential guidelines because governments have been worried that we cannot cope with talking about these issues and will disapprove of them being raised. The experience of Germany is the opposite — truthfulness, candour and inclusiveness in the context of inescapable reality bring their own rewards to the community and its leaders.
“It is important that we have guidelines for doctors on how to practice triage between patients if they have to,” Professor Streeck said. “But I hope we will never need to use them.”
Many in the community, whether children or the elderly, have already taken up the challenge of difficult decision making for COVID-19, and understand the realities. Our community is more that ready to work with governments, through relationships built on mutual trust, truth and candour, to create the guidelines that will protect our health workers and give us all the best possible outcomes in impossible times.
Will Cairns is a palliative medicine specialist based in Townsville and an adjunct Associate Professor at James Cook University.
Rachel Coghlan trained as a physiotherapist, has an MPH and is PhD candidate at the Centre for Humanitarian Leadership. Her work focuses on the role of palliative care in humanitarian emergencies and crises such as wars, natural disasters and disease epidemics and pandemics. She is a member of the Palliative Care in Humanitarian Aid Situations and Emergencies (PalCHASE) network.
Both authors are members of the Australian COVID-19 Palliative Care Working Group, a collaboration of Australia’s peak palliative care organisations convened under the auspices of Palliative Care Australia to enhance the contribution of the palliative care community. The views expressed in this article do not necessarily represent those of the members of the Working Group or its constituent organisations.
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.