Introduction by Croakey: Many of the challenges of end-of-life care have been amplified during the COVID-19 pandemic.
Julia Corfield, a Melbourne doctor working in palliative care, wrote in The Age recently about her experiences in supporting dying patients during the pandemic.
“Dying in a pandemic has brought with it new and more challenging obstacles, ones that make us question what it means to be human,” she wrote. “Death is normal but dying alone is not. So, frankly, when I hear my patients and their relatives say that it is a bad time to die, I can’t help but agree.”
And in The Conversation, Deakin University researchers explored whether more could be done at this time to preserve the patient-family connection at the end of life.
The pandemic has also brought some previously “taboo” topics to the fore, such as the possible need for difficult binary choices of pandemic triage should Australia’s health system become overwhelmed.
Pallliative Care Australia has released a report to explore the challenges that a pandemic or disaster poses for the delivery of health services, particularly palliative care.
The report seeks to prompt discussion around the ethical challenges in providing palliative care during a pandemic and calls for the release of explicit national pandemic triage guidelines, as Nicole MacKee reports below.
Nicole MacKee writes:
“Palliative care is high contact; it’s about touch and engagement and connection,” says Dr Will Cairns, a Queensland palliative care consultant.
“It means being able to read facial expressions. It also brings families together. Given the opportunity, people gather from far and wide when someone is dying.”
The COVID-19 pandemic, however, has turned this ideal model of palliative care on its head, with border closures and physical distancing preventing families from gathering and clinicians having to provide support and comfort to patients from behind personal protective equipment.
On top of these challenges, the possibility that some sectors of the health system may become overwhelmed during a pandemic or disaster is no longer as remote as it may have once seemed.
Cairns said that early in the pandemic, with health services in Italy and the US in turmoil, it became clear that should COVID-19 get “significantly out of control” here, the ability to care for existing patients, those diagnosed with non-COVID illnesses, as well as patients dying from COVID-19 would be severely disrupted.
Palliative Care Australia has released a report – co-authored by Cairns and Rachel Coghlan, researcher at Deakin University’s Centre for Humanitarian Leadership – to explore the challenges in maintaining effective, high-quality palliative care for “patients and their families over the course of the COVID-19 pandemic when governments must also make decisions that are in the interests of the community as a whole”.
The report – ‘Palliative Care during the COVID-19 Pandemic: Understanding the necessity for honest conversations and difficult decisions’ – was commissioned by the Australian COVID-19 Palliative Care Working Group.
This group was established by Palliative Care Australia in partnership with the Australian and New Zealand Society of Palliative Medicine, Palliative Care Nurses Australia, the Australasian Chapter of Palliative Medicine of the Royal College of Physicians (RACP), End of Life Directions for Aged Care, Paediatric Palliative Care Australia and New Zealand (PAPCANZ), CareSearch, caring@home and the Australian Department of Health.
The authors wrote that, even before the COVID-19 pandemic, our ageing population was posing significant challenges for the provision of palliative care services:
Changes to the delivery of palliative care services necessitated by measures to control COVID-19 have caused further strain on the overall provision of palliative care in Australia, for both the admission of new palliative care patients with diseases other than COVID-19, and for those few who have so far died from COVID-19.
While it will be some time before we fully understand the impact of COVID-19 on the delivery of palliative care, for both clinicians and their patients, the things that we learn will help planning for future events.”
The authors wrote during a pandemic, “the obligation to provide palliative care as a basic human right may be overlooked temporarily in the urgent need to prevent deaths at a time when resources are scarce”.
Cairns said it was crucial to explore the ethical issues behind these types of decisions and to develop a pandemic triage protocol. And, he said, the rationale behind such planning needed to be open and transparent, adding that this had not always been the case in other parts of the health system.
“As soon as you start doing ‘secret stuff’ in what is a very public event, people will start to lose confidence in you,” Cairns told Croakey.
Coghlan added that the community voice was crucial in these “open and honest” conversations.
“Pandemic responses, until now, have largely involved governments telling communities what to do without having the necessary community input to help guide their decision-making,” Coghlan said.
“And yet we know from community development and the humanitarian space in particular, that communities can often identify solutions they think will work best for them and will often have a different perspective to that of policymakers, governments, or health professionals.”
Coghlan pointed to the Burnet Institute’s community-centred approach in preparedness and response to epidemics and pandemics – particularly in low-resource settings – and said it was important the community views were also considered in the provision of palliative care.
Advance Care Planning
The authors wrote that many of the decisions that cause concern could be addressed with good communication, and Advance Care Planning (ACP) could facilitate these discussions.
“ACP is uncontroversial and conventional practice in non-pandemic times,” the authors wrote in the report. “Although perhaps more urgent during a pandemic, ACP should be no more controversial or difficult than when an individual is faced with any other serious illness.”
Cairns said ACP could help patients to understand what might be achievable for them based on their overall health, and thus, the choices available to them.
“[ACP] can help to make sure that you are not doing something that a patient doesn’t want because that would be a burden for the patient, and is a waste of resources for the community,” Cairns said.
The authors did emphasise, however, that ACP should not be conflated with discussions about the lack of sufficient resources to treat all those people who desire and would benefit from treatment.
Cairns said a chart outlining the patient journey during the COVID-19 pandemic would help to inform both clinicians and patients, and prompt discussions about the ethical issues around pandemic triage.
Call for guidelines
The authors wrote in the report that clinicians needed guidelines with enough lead-time to be able to integrate an understanding of how they should be applied.
“ED and ICU staff in Italy and in New York, working flat out without prior guidance and with insufficient time to contemplate the ethical balance of rights for every patient, designed their own scoring systems on which they, or in some cases panels of external impartial clinicians, could base on-the-spot decisions,” they wrote.
“In Australia there is a growing awareness of the responsibility of governments to prepare for pandemic triage with a clear set of guidelines that are the product of open and public consultation.”
The authors wrote that almost every jurisdiction in Australia had produced at least one document describing the process for creating triage guidelines and there are “whispers” that national guidelines were in the pipeline, but firm action remained elusive.
“It seems the default mode here in Australia and in many other jurisdictions is that clear triage guidelines will be released only if they are needed, but without specifying how long before,” the authors wrote. “Perhaps the Swiss and the Germans are more rational, pragmatic and/or mature. They have produced pandemic triage guidelines that have been released to the community in case they are needed.”
Coghlan said having clear guidelines would help to assuage some of the moral distress health professional might experience if required to make such complex ethical choices in a vacuum.
“Health professionals will know that they have the support of the broad community, the hospital system, ethics committees, policymakers and governments.”
Reflecting on priorities
Courageous leadership was now needed to ensure that these challenging and complex discussions continued, Coghlan said.
“These are not nice conversations,” she said. “It does take courageous leadership to open up that kind of discussion. And for me the importance of community voice and genuine community participation in this process is absolutely important as well.”
The report authors concluded that epidemics and pandemics were “disastrous and chaotic” and it was not possible to escape the “humbling realisation that humans can never be in control of the rolling tumult” of such an event.
However, they wrote, “COVID-19 also provides us with the opportunity to reconsider how we function in the community”.
“Those of us who work in healthcare, and particularly in palliative care, can take the opportunity to learn from our patients what is important for them in a finite life – their hopes, goals, preferences and wishes – and to reflect on what may have been for some a painfully close encounter with death.
“As always, the interests of our community and each one of us in dealing with these issues will be best served by openness, transparency and honesty about all aspects of the challenge of dealing with COVID-19, including facing up to the risks and uncertainties.”
• The video from Advance Care Planning Australia, shown in the feature image above, can be viewed here.