This guide provides recommendations for supporting the bereavement care of people impacted by COVID-19 related deaths, and other deaths during the pandemic. The purpose is to signpost activities and communications that may support care. This guide is for palliative care services, and other services involved in care of the dying and support for families and carers at this time.
Specialist advice, about recognising and responding to grief and bereavement should be sought from palliative care, bereavement support and social work services, including referral, when needed.
This information will be reviewed regularly.
On this page
- COVID-19 - factors to consider
- Recommended approach
- Pre-death activity
- At death
- Bereavement-centred activity
- Bereavement services
- Document Information
The clinical management of seriously ill COVID-19 positive people creates physical and interpersonal barriers between the patient and their significant others. More generally throughout the sector, current restrictions on visiting hours and visitor numbers may similarly impact upon the grief and bereavement experience of members of the community. Further, social distancing measures will affect the usual informal interpersonal processes of bereavement care across the community, including funeral rituals and family/community support.
COVID-19 - factors to consider
- People dying from COVID-19 will experience unexpected deterioration leading to a rapid death, and therefore their families and carers will have little time for preparation.
- If there is a surge of cases (or local cluster), the bereaved people may also experience multiple deaths of close family and friends.
- Risks of more complex grief and bereavement may be increased due to restrictions on patient contacts during the dying process, social distancing and community isolation, and increased financial and relationships stressors. These factors are relevant to all deaths during the pandemic. For family members and friends of people receiving end of life and palliative care, the restrictions resulting from COVID-19 may impact their ability to touch, hug or kiss goodbye their loved one which may lead to a lot of incomplete feelings for people.
- Pre COVID-19 requirements, an estimated 5-10% of bereaved individuals were considered at risk of developing prolonged grief: an extreme, debilitating grief that impairs functioning and mental and physical health. Whilst grief and bereavement are highly personal and individual, an increase in this proportion may occur during and after the pandemic. In this context, all services are encouraged to address bereavement care fundamentals and ensure pathways to skilled intervention are clearly promoted where possible, including the involvement of social work and palliative care.
Where possible, a ‘normal’ bereavement response should be provided, including risk assessment, immediate support, information and appropriate referral, among other processes. While the majority of anticipated bereavement needs can be addressed by informal bereavement care and support it is unknown what immediate or longer term impacts the present interpersonal constraints may have on grief related health outcomes.
The person’s condition and goals of care are discussed with family/carer/ person responsible (N.B.: a person responsible is not necessarily the patient's next of kin, family or carer).
Visitor restrictions and infection control guidelines are explained, with sensitivity. Family/carers are encouraged to consider how they will manage these in the time ahead. The person responsible / key family member is made aware of any visiting restrictions and options upon admission and as the person’s condition deteriorates.
NSW Health resources about infection control are provided and/or referred to, and the family/carers should be provided information (which may include written information) and trained on the safe use of personal protective equipment (PPE). The current response according to the CEC - COVID-19 Response and Escalation Framework should be explained to the family/carers. The family/carers are also provided guidance on touching the person.
Strategies for family/carers to visit and/or communicate with the person may be explored dependent on available resources e.g. tablet devices, telephones etc., and this will be facilitated by staff. Visual communication between the person and their family/carers should be encouraged.
Refer the family/carers to Social Work for anticipatory grief support.
Advance care planning and the person’s wishes are explored, and memory-making could be discussed. Cultural and spiritual/religious practices that are part of the person’s wishes are identified and observed/facilitated, where possible. If some of these practices are not possible, due to infection control considerations, these will be discussed with the family/carers before the person’s death.
Family/carers are kept informed of the person’s condition and alerted to any changes and/or deterioration.
The person’s death will be communicated in accordance with existing protocols, and a Social Worker will be contacted to provide family/carer support.
Workers will clearly describe to the family/carers where the deceased person will be taken to, and what steps are followed to transfer to a funeral director, if the family/carers wish to know this. Where families request to view the body, they will be advised according to the NSW Health COVID-19 Guidance on handing of bodies by funeral directors (refer to section: ‘viewing the body’). Workers will provide information around funeral service regulations on number of attendees, and offer support to families/carers who may be distressed by the current gathering restrictions.
Support to be provided around cultural and/or spiritual/religious rites that are in line with the deceased person’s wishes. This will include advice on any limitations, according to infection control considerations. Advise the family/carers on what cultural and/or spiritual/religious rites have been completed.
Social Worker to provide comprehensive bereavement care including written information about the processes following death, such as what will happen with their body, how to collect the death certificate, and the role of the funeral director. Also, provide written information about grief and bereavement and information/contact details for bereavement and local support services.
Provide an opportunity or a means to ask any questions where possible. Provide hospital contact information for questions that may arise around the patient’s care at a later date. Identification of risk factors and referral will be provided, as required.
When need is identified, bereavement follow up telephone call to be made within two weeks following death or sooner if possible.
A number of Covid-19 bereavement resources for practitioners and the public have been created by the Australian Centre of Grief and Bereavement.
Many bereaved people are likely to need bereavement services to assist with their recovery, and the expected volume of additional clients will overwhelm current available. In addition, many will present with bereavement issues many years after the event.
Consideration may be given to whether longer term enhancement is needed to local bereavement supports and services if there has been a surge of deaths.
Palliative Care Community of Practice
Dr Nigel Lyons, Deputy Secretary, Health System Strategy and Planning
Health and Social Policy Branch
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