Home Clinical resources for End-of-Life and Palliative Care in the COVID-19 environment

Clinical resources for End-of-Life and Palliative Care in the COVID-19 environment

These resources have been developed to assist healthcare professionals respond to the care needs of patients in the evolving COVID-19 environment. This includes clinical care of those who require general and supportive care during COVID-19 illness, and for those who will be unlikely to recover and as a result will go on to require end-of-life care.

These resources do not replace specialist consultation, advice or experience. Specialist advice should always be sought to support the care of those with complex needs or who are experiencing intractable symptoms.

The information held here is current guidance only and will be reviewed, updated and replaced as new information becomes available. Return to this website regularly for live information, rather than storing printed local copies from these webpages. This information is not intended for use by consumers, consumer information on COVID-19 can be found on Healthy WA.

The resources held in these web pages were produced or curated by the WA Cancer and Palliative Care Network (WACPCN) in consultation with clinicians. We welcome your input and feedback to ensure that these resources are useful and relevant. A Community of Practice has been established and we would welcome your membership via GoalsofCareCommunityofPractice@health.wa.gov.au

Palliative Care aims to actively provide holistic, person centred care across the end-of-life trajectory; from diagnosis of a life-limiting illness through increasing decline, during the last days of life, at time of death and during bereavement. Care during this time should improve quality of life through the prevention and relief of suffering and the anticipation of symptoms. Good end-of-life and palliative care is active care and can be provided alongside treatment for the underlying condition.

Palliative care also recognises the importance of individuals engaging in open and honest conversations to discuss and advance plan their end-of-life. Establishing care preferences can be assisted by using the Advance Care Planning and Goals of Care Patient Care processes.

Goals of care discussions and documentation are recommended for all patients.

Symptom management and care for adults with COVID-19

These guidelines are intended to support the care of people with COVID-19. General palliative care symptom management guidelines for people dying of other conditions are also available.

These clinical guidance documents are to be used in conjunction with individual patient assessment and good clinical decision making. The recommendations should be tailored to individual patient requirements and circumstances. Ongoing reassessment is required with adjustment of therapy as necessary.

Assessment tools and resources

Assessment is the cornerstone of high-quality end-of-life and palliative care. Tools used to guide assessment are evidence based and can also be used to inform assessment in the care of individuals with COVID-19.

The Palliative Care Outcomes Collaboration (PCOC) is a national program that that uses standardised clinical assessment tools. Many public and private West Australian health services use PCOC to measure and benchmark patient outcomes in palliative care. Participation is voluntary and can assist palliative care service providers to improve practice and provide evidence for services to meet core NSQHS standards. This is achieved via the PCOC patient outcome improvement framework which is designed to:

provide clinicians with the tools to systematically assess individual patient experiences using validated clinical assessment tools
define a common clinical language between palliative care providers to support assessment and care planning
facilitate the routine collection of national palliative care data to drive quality improvement through reporting and benchmarking
provide regular patient outcomes reports and workshops to facilitate service-to-service benchmarking
support research using the PCOC longitudinal database.

The PCOC data set includes the clinical assessment tools: Palliative Care Phase, Palliative Care Problem Severity Score (PCPSS), Symptom Assessment Scale (SAS), Australia-modified Karnofsky Performance Status (AKPS) Scale and Resource Utilisation Groups – Activities of Daily Living (RUG-ADL). More information is available on the PCOC website (external site).

The following assessment tools are recommended to support the supportive and end-of-life care needs of individuals who have COVID-19:

PCOC also provides Self-directed Education PowerPoints (external site)

Breathlessness and respiratory distress (including secretions)

In palliative care, the focus of care is comfort and quality of life and therefore, the overarching measure is the level of distress the person is experiencing from their breathlessness.

To develop a management plan, it is necessary to first understand the intensity, distress and impact of their breathlessness:

General Management and Care (flowcharts)
- Management of respiratory distress for adult patients with COVID-19 (PDF 1MB)
- Management of excessive secretions for adult patients dying with COVID-19 (PDF 1MB).

Delirium

In patients with COVID-19, delirium can be a manifestation of direct CNS invasion, induction of CNS inflammatory mediators, secondary effects of other organ system failure, and untoward medical and environmental factors including heavy use of sedatives for prone positioning of the patient and quarantining and social isolation during care.

The approach to delirium management must therefore reflect broader understanding of the goals of care for the individual patient within the context of local health system capability.

Assessment

To develop a management plan, it is necessary to understand the intensity, distress and impact of the delirium. As delirium often affects an individual’s ability to perceive accurately and communicate needs effectively, assessment should include use of validated screening tools alongside comprehensive clinical assessment including:

medical history (including pre-existing neurodegenerative disorder, complex physical comorbidities)
intensity and pattern of delirium
- history of onset, fluctuation, severity etc
- accompanying features (e.g. Hallucinations / misperceptions, delusions, agitation, difficulty processing information, mood lability)
General assessment tools
- Assessment tools to assist with suspected delirium in patients with COVID-19 (including 4AT & PINCHME) (PDF 157KB)

General Management and Care

In a palliative approach, the focus of care is comfort and quality of life and therefore, the overarching measure is the level of distress the person is experiencing from their delirium.

Providing a delirium-friendly environment may be challenging for patients with COVID-19 being cared for in isolation by staff wearing PPE. While appreciating the constraints of care, the following issues are important to address wherever possible:

lighting appropriate to time of day (although use of a night light may be useful)
quiet and calm environment (noise reduction strategies)
clear and concise communication by all staff
staff to clearly state their name and role and the purpose of each interaction (a large named identification photograph may be useful when wearing PPE)
approach patient from the front (peripheral stimuli are more likely to be misinterpreted as hostile)
frequent prompts concerning orientation
provision of clock and calendar that the patient can see
ensure that patients who usually wear hearing and visual aids are assisted to use them
Provide other communication aids as appropriate for the individual
Use interpreters for non-English speaking patients

Medication Management

Due to the multifactorial presentation of delirium in patients with COVID-19, for those receiving active treatment, pharmacological management should be discussed with onsite specialists and individualised to the specific patient.
Where person remains agitated after assessment and non-pharmacological management, see Management of delirium or agitation for adult patients with COVID-19 (PDF 1MB).
Additional information at Management of acute behavioural disturbance in COVID-19 (PDF 416KB).

Management of coexisting symptoms

National COVID-19 Clinical Evidence Taskforce - Management of people with COVID-19 who are receiving palliative care (external site)
ANZSPM Guidance – palliative care in the COVID-19 context (external site)
e-Therapeutic Guidelines: Palliative Care – available through your organisations library

Medication information – opioid conversions and infusion compatibility

Considerations after death

Medical duties for reporting after death:

The doctor who was responsible for the medical care of a person before their death or who examines the deceased person after death, must complete and sign a medical certificate cause of death. Alternatively, the certifying doctor may be a doctor who is part of the care team looking after the patient who has not personally met the patient, but who has access to sufficient clinical information to make a sound assessment as to the cause of death, any contributory causes and the time intervals involved. This certificate must be issued within 48 hours after the person's death and given to the funeral director or persons arranging the funeral service. The doctor is not required to give this notice of the cause of death in circumstances in which the death is reported to the State Coroner.

Guidance on completion of the death certificate: COVID-19 Guide for Medical Practitioners (external site)
Certificate of the medical practitioner required under the Cremation Act (form 7) (PDF 198KB).

COVID-19 is a notifiable disease under the Public Health Act 2016 (WA) and therefore all COVID-19 deaths must be reported to the Chief Health Officer via the notification form. This is in addition to the normal certification and registration of death procedures, or notification to the Coroner under specific circumstances.

Notification form and information for notifiable infectious diseases in Western Australia. (external site).

Additional healthcare professional resources

Guidelines for the preparation of the deceased for burial or cremation
A Guide for Health Professionals – Funerals and Sorry Business during the coronavirus pandemic (PDF 417KB).

Other resources

Additional readings:

Heath L, Carey M, Lowney AC, Harriss E, Miller M. Pharmacological strategies used to manage symptoms of patients dying of COVID-19: A rapid systematic review. Palliat Med 2021; 35(6): 1099–1107.
Andreas M, Piechotta V, Skoetz N, Grummich K, Becker M, Joos L, et al. Interventions for palliative symptom control in COVID-19 patients. Cochrane Database Syst Rev. 2021 Aug 23;8(8).

Spotlight on pharmacological interventions for palliative care symptoms the following videos have been developed for personal professional development or use as an education resource:

Acknowledgements: Penelope Tuffin, Advanced Practice Pharmacist, Palliative Care and Pain Management, and the Cancer Council WA.

Last reviewed: 23-02-2022