IT IS now several months since the COVID-19 pandemic began to gather over the horizon, much like a cyclone, but with the early warning clouds obscured by the smoke of bushfires. Over that period, the public focus of attention and planning has naturally been on containment and preparation.
From the moment that the disease began its inexorable spread, first in China and then around the globe, it was obvious that this is a virulent and highly contagious disease. No-one has immunity and, until there is a vaccine or we have been infected and recovered, we are all susceptible. It will infect a very high proportion of the world’s population, and based on the data from around the world, many people are likely to die.
We all now know that governments do not expect to be able to protect us from infection with COVID-19. The goal is to slow the rate of transmission to give time to prepare the health system for an onslaught of patients, to flatten the peak in the number of patients so that fewer need treatment and attend hospital at any one time, and to reduce health worker absenteeism. An excellent New York Times article provides a clear visual explanation.
While it is only very recently that governments have started to talk publicly about the mortality from COVID-19, those who work at the frontline, in intensive care units (ICUs), emergency departments and even palliative care, have for some time been quietly discussing the reality that the numbers of very sick people may be beyond the treatment capacity of health care systems. With attention focused on increasing capacity and decreasing demand, less thought has been directed to the needs of the people who will die from COVID-19; those for whom intensive treatment has not been successful, who would not be candidates for intensive treatment under any circumstances, or who choose not to have life-prolonging intervention. If the numbers of people seriously ill with COVID-19 are very high and there are even just a few more candidates than places, some people will be denied intensive treatment because there is not enough for everyone.
We will not explore that final point in great depth. However, there is a real possibility that the state will have to resume the individual patient’s right to choose to have treatment, and impose pandemic triage by asserting the power to make decisions about who to treat in the interests of the community as a whole. Before that happens, the community must be engaged prospectively in the process of deciding the underlying ethical principles and understand that triage will be implemented equitably and without exceptions.
So, where does that leave the palliative care of those who seem likely to die or are dying from COVID-19?
This is an issue that has been considered over many years:
Current responses to Humanitarian emergencies and crises rightfully focus on saving lives, but for both ethical and medical reasons, the prevention and relief of pain, as well as other physical and psychological symptoms, social and spiritual distress, are also imperative. The principles of humanitarianism and impartiality require that all patients receive care and should never be abandoned for any reason, even if they are dying — Dr Naoko Yamamoto, in the Foreword to the WHO Guide Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises
Australia’s peak palliative care organisations – Palliative Care Australia (PCA), the Australian and New Zealand Society of Palliative Medicine (ANZSPM), Palliative Care Nurses Australia (PCNA), the Australasian Chapter of Palliative Medicine (AChPM), Paediatric Palliative Care Australia and New Zealand (PaPCANZ), CareSearch and the End of Life Directions for Aged Care (ELDAC) Project – have created a Working Group to support vital nationwide preparation for the likelihood that COVID-19 will cause significant mortality. We are preparing to provide end-of-life care for an unknown number of people, in addition to our pre-existing workload of seriously unwell patients, and their families, for whom this pandemic will generate significant physical and psychological distress.
The palliative care community in Australia is comprised of clinicians from across the full spectrum of the clinical disciplines who care for people who are dying or living with a life-limiting illness. As a group, we possess a wealth of knowledge and experience in the medical management of the physical aspects of dying and the emotional, psychological, social, spiritual and existential care of patients and their families who are dealing with death.
We currently deal with death on a daily basis. We are better equipped than most to cope with the tasks of caring for large numbers of people dying in a pandemic and their families, and supporting the community as a whole. In addition, we have extensive links across state and national health systems that can be mobilised to promote and integrate palliative care into planning and service delivery.
At the national level, PCA, in partnership with key stakeholders, has been engaged in a variety of activities to ensure that throughout the epidemic patients and the families of both existing and new patients, with COVID-19 and other illnesses, have ongoing access to the end-of-life care that they need. These include:
- working with national planning bodies to integrate the vital role of palliative care into the national response to the mortality that is likely from COVID-19;
- working across jurisdictions to ensure continuing supply of the medications essential for palliative care, particularly those that might be necessary for the respiratory and other symptoms of COVID-19;
- supporting efforts to facilitate telehealth delivery of care and support to patients and clinicians, particularly those with limited access to specialist services;
- consolidating and maintaining up-to-date information and guidelines about the clinical syndromes of COVID-19 and how they might be managed in the palliative care context. PCA and the other peak bodies will coordinate their resources to help standardise evidence-based practice and minimise duplication and information overload, and consequent confusion;
- facilitating state and territory palliative care organisations to develop their local plans for dealing with COVID-19;
- communicating information to the public in clear and compassionate language, that aligns with the principles of non-abandonment.
Across Australia, palliative care services already care for a large proportion of the people who die, and particularly of those who are unwell for many weeks, months or years, such as patients with cancer, cardiac and respiratory diseases, neurological disorders, renal failure etc. These patients will continue to need our care and to die over the course of the epidemic, and new patients will join their ranks. Careful planning is required to maintain the continuity of their care throughout.
If the workload becomes very high, much of the routine work of palliative medicine and palliative care would need to be curtailed, including the commitment of significant quantities of time to exploring the holistic needs of individual patients. Like everyone else, palliative care clinicians will have to learn how to allocate their time so that all patients can have their core palliative care needs met. While the provision of the physical aspects of patient need would have generally first priority, we cannot ignore the huge burden of emotional distress that permeates the human experience of this pandemic, which will only grow over time.
Palliative care services in every state and territory are assessing their resources, identifying gaps, and mapping how they will cover all the communities within their jurisdiction. As they do so, they are coordinating and integrating with the broader COVID-19 responses in their state or territory.
This week is Advance Care Planning (ACP) Week and everyone is encouraged, particularly the elderly and the unwell, to consider ACP, which has long been a core component of palliative care. The complexity of modern healthcare requires that we seek to understand our patients’ preferences, wishes and choices, and proactively involve them in planning for their future treatment and care. In a series of interviews, some of the elderly residents of a residential aged care facility (RACF) expressed little concern about COVID-19. We suspect that, like some of our elderly relatives, these seniors are less concerned about dying than about how they are able to live their lives. For many, ACP may be as simple as a conversation with family about choices and preferences. For those people who prefer not to receive treatment, or who have significant illnesses, open conversations with health care workers and family that are backed up with appropriate documentation, can pre-empt futile intervention and burdensome or unwanted treatment. The ACP Australia website is an excellent resource.
All specialist palliative care services are very willing to provide support and guidance to clinicians caring for patients virtually anywhere – in ICUs, other hospital wards, RACFs, special purpose facilities, clinics, those dying at home, and to rural and remote health care facilities.
For most patients dying in the community – at home, in RACFs, and in rural and remote areas – the coordinators and managers of palliative care will be GPs, nurses and local non-specialist medical services. For some practitioners, the provision of end-of-life care is an unfamiliar role and in the course of this pandemic many will find themselves with roles and tasks outside their scope of training, and for which they may feel ill-equipped. Non-specialist facilities can prepare by examining their skill base and resources, and educating their staff for the tasks they may face in the future by tapping into the educational resources online (eg, CareSearch) and from their local palliative care service.
Specialist palliative care services are being encouraged to mirror such activity by building relationships across their geographical area of responsibility, including particularly with GPs and RACFs. These links and associated modes of communication are best developed before they are needed.
RACFs and some remote Indigenous communities require special attention. The residents of RACFs are almost all elderly and many have multiple comorbidities that place them at added risk from COVID-19. Many of the residents of Indigenous communities have poor health at younger ages compared with the general population, with remoteness, limited access to health care, poor housing and overcrowding contributing to increased risk during a pandemic. The care of these groups may be a challenge for staff with little experience in the palliative care of single, let alone multiple, patients. Many palliative care services are creating more formal links with RACFs and Indigenous communities in anticipation of the epidemic ramping up.
If you or your organisation think that you and your patients would benefit from upskilling in palliative care in anticipation of the COVID-29 pandemic, take a look at CareSearch or contact your local palliative care service. Every palliative care service has staff who can provide training and resources as well as clinical consultation for the management of individual patients. Education, training and clinical support are made much easier by general access to high quality telehealth.
The community must be assured that patients will not be abandoned if intensive treatment for COVID-19 is unsuccessful or unavailable; whatever happens, they will continue to be provided with the best possible supportive care by which they may still recover. If it becomes clear that they are dying, their palliative care, with the goal of comfort, will not stop. All of us are responsible for ensuring that people feel confident that they will receive the palliative care that they need.
We also need to be sure to care for one another.
The successful delivery of health care requires effective multidisciplinary collaboration and mutual respect. Many of our colleagues are experiencing conflict between their duties to family and to their patients and co-workers, and dealing with fear for their own mortality and that of their family and friends. For many in the community, including health workers, this pandemic is also causing severe financial stress. For many of us, the world as we have come to understand it is being turned upside down.
As health workers, many of us identify as being people who save lives. Those who are distressed by large numbers of deaths that they are powerless to prevent will need to know we are there to support one another. None of us have experienced anything like this before in our own lives. Personal support in the form of acknowledgement, direct personal conversation, validation, normalisation, education, standardised guidelines, empowerment to act and kindness can go a long way to help those who may feel isolated and overwhelmed. Social distancing creates its own problems – a no-touch hug does not meet the very basic and deeply embedded human need for physical contact.
As clinicians and leaders in our community, we health workers have a vital role in encouraging community engagement in the processes of dealing the COVID-19 pandemic. It means telling our community that we in palliative care are working on our community’s Plan B just in case the worst-case scenarios with which they are being bombarded in the media come to pass. Open explanation of the difficult choices and acknowledgement of the likelihood of at least some deaths empowers people to address their fears more openly and to move on to an enhanced sense of community unity.
We all have a role to play. The ways we clinicians behave in the face of disorder and uncertainty can help foster a culture of mutual support, cooperation, engagement, altruism and kindness.
We are all in this together.
Dr Will Cairns is a palliative medicine specialist based in Townsville and has put thoughts of retirement on hold until it is clear how COVID-19 plays out.
Professor Meera Agar is a palliative medicine physician and Chair of both the board of Palliative Care Australia and the Australian COVID-19 Palliative Care Working Group.
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.