Dying still matters in the age of COVID-19

Joel Rhee    Matthew Grant    Karen Detering    Josephine M Clayton    Kelly Arthurs   
doi: 10.31128/AJGP-COVID-28   |    Download article
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The ongoing COVID-19 pandemic has led to dramatic changes to life in Australia as well as the rest of the world. Fortunately, at the time of writing, Australia has experienced lower case numbers and fewer deaths as a direct result of COVID-19 when compared with many other countries, and in comparison to early Australian modelling. Despite this, advance care planning (ACP) and palliative care remain more relevant than ever in Australian general practice. While most general practitioners (GPs) have not cared for a person dying from COVID-19, the ongoing pandemic is having a significant impact on people with palliative care needs, including people of advanced age and those who are frail or have chronic and advanced diseases.1 Physical distancing measures have affected the availability of health services and social support and placed additional burden on carers, many of whom have isolated themselves from usual family and social networks because of their caring duties. Many people are anxious that they might not be able to get help if they were to become unwell; concurrently, many patients with urgent needs are not seeking medical attention for fear of contracting COVID-19.2 The anxiety and uncertainty surrounding the COVID-19 pandemic present an important opportunity and a need for GPs to talk to their patients about their preferences for future care (ie ACP) and thus help their patients to take back some control over their healthcare.

Practical tips for ACP during the COVID-19 pandemic

ACP can take place over multiple consultations to suit the context of general practice.3 Initiating the discussion is often the most difficult step but could be done opportunistically (eg following on from small talk during a consultation about an aspect of COVID-19). Some GPs are worried that ACP could increase patient anxiety, but a recent study in the Australian general practice setting showed a high level of acceptability of patients in being asked about ACP.4 A patient who expresses an interest in ACP could be given written information to read, including information about choosing and appointing a substitute decision maker (SDM), and have an arrangement made for follow-up consultations to further discuss the topic. The ACP discussion itself follows a broad outline and should include a discussion about the patient’s preferred SDM, their concerns about their future healthcare, and any values or preferences they would want to be taken into account about their healthcare if they were to become very unwell. This may include finding out if there are any specific treatments that the person would want to avoid, for instance ventilation and cardiopulmonary resuscitation (CPR). It may be appropriate to discuss the likely outcomes from ventilation and CPR if the patient were to be infected with COVID-19 or if they became unwell from other causes (ie a very poor outcome is likely for people who are older and frail living in a residential aged care home, or with serious comorbidities such as advanced cancer or cardiorespiratory conditions). Another important topic is the site of care (eg home versus hospital), including the provision of realistic information on how this may or may not work. It is important to encourage the patient to discuss their preferences with their family, in particular their preferred SDM, and/or to consider documenting their preferences in an advance care directive. It might be appropriate to offer to telephone and speak with the patient’s SDM if that would be helpful to the patient, or to have a telehealth consultation with the SDM present. The order of the discussions may vary and can take place over multiple consultations, either face to face or via telehealth/telephone. Box 1 contains a list of useful resources including communication tips, resources for GPs undertaking ACP during the COVID-19 pandemic, and educational programs and tele-mentoring support in ACP developed specifically for general practice.

Practical tips for palliative care during the COVID-19 pandemic

The approach to palliative care during the COVID-19 pandemic is not too dissimilar from other times, with a few exceptions. Assessment of the patient should still be holistic, addressing not only physical symptoms but psychosocial and spiritual wellbeing.5 Telehealth or telephone consultations could replace the need for face-to-face visits in many cases, but home visits should still be offered if there is clinical need. Appropriate personal protective equipment should be used as required. Anticipating future needs and planning in advance is vital in providing effective palliative care because of alterations in modes of service delivery, access to services, medical equipment and medications. Early engagement with specialist palliative care and health and social services is important, and anticipatory prescribing and charting of medications (eg analgesics) is essential, especially in residential aged care homes or for patients with deteriorating health who are planning a home death. Psychosocial and spiritual needs require special attention because of physical and social isolation. Finally, it is important to consider pre-emptive ways to connect people; for example, encourage the use of technology to help connect the patient with family and friends. Box 1 contains a list of useful resources on anticipatory prescribing and education resources for carers.

Box 1. Helpful resources for advance care planning and palliative care in the age of COVID-19
Useful resources for advance care planning Useful resources for palliative care


ACP and palliative care remain as relevant as ever for GPs during the ongoing COVID-19 pandemic. GPs should feel confident about raising and talking to their patients about their treatment preferences. It is critical that GPs continue to plan and provide anticipatory healthcare to people with palliative care needs in collaboration with specialist palliative care services and other providers.

First published online 30 June 2020.

Competing interests: MG reports personal fees from Australian Digital Health Agency, where he is employed as a Clinical Reference Lead and member of the National Goals of Care Collaborative steering committee.
Provenance and peer review: Commissioned, peer reviewed.
Citation: Rhee J, Grant M, Clayton J, Detering K, Arthurs K. Dying still matters in the age of COVID-19. Aust J Gen Pract 2020;49 Suppl 28. doi: 10.31128/AJGP-COVID-28.
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