End-of-life and emergency care planning during COVID-19

07 May 2020 | Dr Jane Ingham, MB BS FRACP FAChPM, Senior Medical Adviser, Advocacy, Education and Research, Avant and Dr Jack Marjot, MB BS BSc, Doctor in Training Medical Adviser, Avant

During the coronavirus (COVID-19) pandemic, we are aware that many patients and family carers are expressing concern to their doctors about care if this illness were to impact them. Sadly, the mortality risks are higher in the elderly and those with co-morbidities. 

This situation reminds us of the importance of advance care planning and establishing emergency care plans for elderly people so that, if deterioration occurs from any serious illness, their care can be managed in a way that respects their wishes. If a person deteriorates, plans will need to be made promptly about:

  • Appropriate escalation in care
  • Whether or not transfer to hospital is appropriate
  • Symptom management
  • Family and carer support.

It can help greatly in a crisis if an understanding about the person’s preferences and priorities has been developed before the deterioration occurs, and if consensus has been reached about these matters with the person and/or their medical decision-maker, family and carers.

Doctors know conversations about emergency or advance care planning are not always easy or quick. In the context of the pandemic, both opportunities for, and challenges to, planning exist. As planning for care towards the end of life is as important as ever, considering and addressing these for your practice setting can be helpful.

Patients and families may be worried and fearful about the potential impact of COVID-19, and when they raise their concerns there may be an opportunity to initiate a planning discussion. While some patients and families may be hesitant to plan, opening the door to listening to and discussing their concerns is important. Some new challenges include possible limitations on face-to-face conversations and in-person family meetings. Accessing witnesses for statutory documents may also be difficult. Below, we discuss some approaches to overcoming these difficulties.

Suggested approaches

The RACGP states that general practitioners can use a proactive, systematic approach to anticipate and provide person-centred care at the end of life and a ‘good death’ by:

  • initiating advance care planning early to document patient wishes and directives
  • anticipating and assessing escalating palliative care needs early along the illness trajectory
  • establishing clinical care goals and treatment decisions with the patient/medical decision-maker

Avant suggests considering the following, keeping in mind that a ‘step-wise approach’ can be helpful for working with patients and carers to plan for care towards the end of life.

  • Doctors check the recency of discussions with the individual and/or their medical decision-maker about emergency planning, and their values, priorities and wishes for care towards the end of life.
  • Opportunistic discussions (for example, at the time of a flu vaccination, health check, or care planning visit) can be used to explore and acknowledge concerns, and provide ‘seeds’ of information, for example, reading materials, and help patients and families to talk together before revisiting plans with their doctor. This approach allows for planning conversations to evolve over time using telehealth as well as face-to-face opportunities.
  • A starting point for conversations about emergency and advance care planning can sometimes be a ‘routine’ review of emergency contacts and the identification of the patient’s substitute medical-decision maker. These conversations can provide opportunities for exploring future care priorities. For example, whether the patient has an advance care plan or directive and if so, what guidance it provides; what guidance they have given to their substitute decision-maker, and the benefits and burdens of potential hospital-based interventions in the context of the patient’s current health situation.
  • When discussing the care possibilities and the patient’s preferences for the management of a serious illness towards the end of life, it may be an appropriate time to discuss their preferences for palliative care in the future.
  • It may also be appropriate to discuss some of the challenges that exist in the pandemic and consider ways to address these - for example, visiting restrictions and other public health requirements.
  • You might also discuss a plan for sharing the patient’s preferences and wishes with key members of their healthcare team, and when sharing occurs, these should be clearly documented. Any advance care plan or directive documents should be included in the medical and nursing record and, where applicable, you might ask the patient to include these documents in their My Health Record.
  • To complement this, after you have established the approach to care with the person and/or their medical decision-maker, it can be helpful to provide clear guidance in advance for those caring for the patient - in home or aged care settings - about the specifics of the care plan for acute deterioration. This can be quite sudden in COVID-19 - as it can be in many illnesses that affect the elderly - and sharing the patient’s priorities and providing a clear plan can assist with: decisions about transfer and escalation of care, disease management, symptom relief, and family and/or carer support. If the plan involves palliative care, we suggest you consider whether to put a symptom management plan in place - including, if needed, the prescription of medications for symptom relief - especially if the patient expresses a preference for not being transferred to hospital at the end of their life.  Local palliative care services can also be contacted to provide advice and support for patients and families at the end of life.
  • Finally, in any setting, in the event of a sudden change in the patient’s health status, health professionals need to be able to easily access essential patient details. This can be challenging in the home care setting. Encouraging patients to keep copies of advance care plans in accessible places at home along with lists of contacts and medications can help. My Health Record can also be a good place to enter and/or check these details. Important details include: contact details for the patient’s GP and other relevant professionals; medication lists; ongoing treatments; key documents such as advance care directives; and details of any care responsibilities that the patient has for others – for example, for a frail spouse or even a pet.

The distress of acute deterioration can be decreased by exploring with the patient and/or their medical decision-maker in advance, their concerns, hopes, values and priorities, and establishing, where possible, clear plans. Revisiting those plans when deterioration occurs is key, but having emergency and advance care planning, along with plans for symptom management and family support, already in place will help you to understand and care for the patient, their carers, and family, and assist you and others to be responsive to the patient’s needs and priorities.

Helpful resources

The resources below include information that can assist with care planning during the COVID-19 pandemic:

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