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Background

This guidance provides information and considerations for a person with confirmed COVID-19 infection being cared for at home at the end of life. It should be read in conjunction with Chapter 8 of the COVID-19 Infection Prevention and Control (IPAC)Manual and the COVID-19 screening and guidance for NSW Health outpatient and home visiting health services. Please note however that the latter guidance is not specifically about care for people with confirmed COVID-19 infection.

This document will be reviewed and updated when related resources are produced.

It will be highly challenging to care for people with COVID-19 at home, rather than at hospital, and the requirements to minimise risk to people receiving palliative care, carer/family and workers will be significant. Where the considerations in this guidance cannot be met by all care providers, the person may need to be cared for at hospital, even though this may not be the person’s preferred location of care. Palliative care and/or community nursing services may have local tools or processes to facilitate home care, where this is decided upon and can be supported. 

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Can a person with confirmed COVID-19 infection be provided palliative care in the community, including at home?

Yes, if a person with a confirmed COVID-19 infection does not require admission to hospital for their care, it is possible for them to be cared for at home, including in a residential aged care facility (RACF). This applies when a COVID-19 positive patient is receiving supportive or palliative care, or care in the terminal phase. In situations and clinical conditions where virtual care may be challenging (e.g. when the person is unstable and the family are not able to provide care), alternative accommodation should be considered, such as a medi-hotel or care in hospital as clinically appropriate.

Consideration for palliative care at home should be made on a case by case basis, and given the infection prevention and control and care considerations it may not be possible for care to be provided in the home. However, where this is in line with patient wishes, and there is capacity to do so, the following guidance and considerations are provided.

Palliative care at home can only be provided when:

  • this aligns with the local health service plans and capacity of the community palliative care service (PCS) during the pandemic (including partner providers);
  • the current COVID-19 risk level is understood by the carer/family and workers, and can be responded to according to Chapter 3: Response and Escalation Framework of the COVID-19 Infection Prevention and Control Manual
  •  the clinical needs of the person are able to be met;
  • Infection prevention and control procedures can be followed by all health and other support services as well as family and carers. See Chapter 8: Hone Visits of the COVID-19 Infection Prevention and Control Manual 
  • necessary community health and support services to meet the person and their carer’s/family’s needs are available, including equipment and medication needs, supply of meals and other essential groceries, General Practitioner (GP) and Funeral Director services;
  • there has been engagement and consideration with RACFs, partner provider agencies, and GPs, and roles are clear;
  • the decision to be cared for at home aligns with the person’s wishes;
  • carers and family members who will have contact with the person are fully informed, and understand infection risks and public health implications for themselves;
  • risk issues have been considered and addressed for any children, people with disability or other vulnerable people living in the household. Consideration should include ensuring their needs are met, regarding potential infection prevention and control and other risks; and
  • the person and carer/family can be provided with sufficient appropriate personal protective equipment (PPE), education on its use, and the PCS has ensured their competency, depending on the person’s condition.

The above factors should be considered before referrals for community palliative care are accepted during the pandemic if the referral is in part for a home death. Please note that community palliative care providers vary across LHDs.

Alternative approaches to delivering care, including telehealth, should be considered to support care. The person, their family and carers will be involved in discussions and decisions about care.

Alternative approaches to delivering care, including virtual care, and hospital admission for palliative care should be considered. The person and their carer/family will be involved in discussions and decisions about care. Wherever possible, actions should be taken to support carer/family contact in some form.

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What are the service delivery considerations?

When local service plans have capacity to support care at home for people with confirmed COVID-19 with complex clinical needs, people will need to be admitted for care. This may change at times according to people’s current need, local case numbers and service capacity. The PCS may need to make some additional checks to ensure the person and carer/family’s needs can be met.

In sites where providing palliative care at home is an option for care, a holistic assessment will need to be conducted to identify the services and supports required by the person, their carer and family. In this instance, the PCS and other community services required for a home death may also need to make some additional checks to ensure the person’s and their family’s needs can be met.

This may include:

  • Coordinating with other community health services and Hospital in the Home (HITH) services
  • Confirming how the patient’s GP and community pharmacy will be able to support care
  • Checking whether in-home supports, such as Commonwealth Home Support Program, equipment supply or home care packages, can continue or be arranged. Alternative plans should be made to ensure needs are met if usual services are not available.
  • Ensuring that services are able to follow all infection prevention and control guidance for COVID-19 - See Chapter 8: Hone Visits of the COVID-19 Infection Prevention and Control Manual  (please note that the infection prevention and control guidelines may be updated as the pandemic progresses). Specific guidance for primary and community care is also available -  See Chapter 7: Non-acute healthcare settings of the COVID-19 Infection Prevention and Control Manual  
  • Where a funeral director is identified, checking they will be able to provide the service in line with guidelines (guidance on handling deceased bodies within hospitals is also available).  
  • Consideration of, and discussion with the person, their carer and family about any specific, individual care needs for example, related to communication, religion, disability or culture.

Vritual Care 

  • Direct contact with the person may not be required for all care provided at home. For these activities, virtual care options can be considered.
  •   NSW Health guidance includes risk factors for serious disease, including:
  • Aboriginal and Torres Strait Islander people 50 years and older with one or more chronic medical conditions
    • People with chronic medical conditions
    • People 70 years and older
    • People with compromised immune systems
  • Agency for Clinical Innovation (ACI) guidance on telehealth is available.

Paediatric patients

  • The above guidance can apply for patients who are children
  • After hours support is available from NSW Paediatric Palliative Care Medical On-Call or the specialist PPC team during business hours
  • The following Hospital Switchboards have the current roster and contact details of On Call Consultants and Fellows:
    • Sydney Children’s Hospital (SCH) 02 9382 1111
    • Children’s Hospital Westmead (CHW) 02 9845 0000
    • John Hunter Children’s Hospital (JHCH) 02 4921 3000

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How should vulnerability be considered for home visits?

  • Vulnerable (at risk for COVID-19) patients/clients should be identified and risks associated with specific COVID-19 vulnerability should be considered in the provision of home care.
  • The number of care providers and contacts for vulnerable patients/clients should be minimised as much as possible whilst maintaining the health and wellbeing of patients/clients e.g.one or two. For example for this vulnerable group; no students attending home visits, care providers from different organisations should have no conflicting appointments.
  • If there are visitors who have received an exemption from hotel quarantine, the service should contact the relevant Public Health Unit and refer to the Infection Prevention and Control Manual for guidance.
     

What are the screening considerations for facilities?

The following guidance should be referred to:

  • Screening advice for Residential aged care facilities
  • Screening advice for disability care facilities
  • Screening advice for home care service providers facilities

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What are the personal protective equipment (PPE) considerations?

  • PPE usage should incorporate the current COVID-19 risk level and response according to COVID-19 Infection Prevention and Control Manual  see Chapter 3: Response and Escalation Framework
  • The community PCS or community nursing (depending on whoever is providing the direct care) is responsible for providing PPE for the person and their carer/family.
  • NSW Health has provided advice on PPE requests for NSW Health funded NGOs.
  • The LHD Public Health Unit or LHD/SHN delegates will provide education and information to the person, their carer and on the necessary infection prevention and control measures, for them to be deemed competent to use PPE. The Public Health Unit or LHD/SHN delegates can advise family on this - see Chapter 8: Home Visits of the COVID-19 Infection Prevention and Control Manual
  • The PCS should ensure the family is able to disinfect the home appropriately, and dispose of contaminated items and PPE The LHD’s Public Health Unit or LHD delegates can advise the carer/family on this.  - see Chapter 8: Home Visits of the COVID-19 Infection Prevention and Control Manual
  •  Online PPE training is available, however this is designed for health workers. The Commonwealth Department of Health (aged care) is developing a COVID-19 training program that includes: Module Nine: COVID-19 in-home care settings. Check their website for updates.

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What should be considered for the carer and/or family involved?

The PCS should engage with families and careers to make sure that they fully understand the implications of caring for the person at home. The following information should be provided:

  • what is likely to happen to the person during their final days and hours;
  • in relation to COVID-19, carers should be informed about managing agitation and severe breathlessness as these are symptoms, which are both known to be common for people with COVID-19 at the end of life;
  • access to appropriate medications needs to be planned prior to the time at which they are required, including necessary processes to administer the medication;
  • PPE and infection prevention and control required, infection prevention and control required (including CEC donning and doffing processes) and risks of infection to the household members  - see Chapter 8: Home Visits of the COVID-19 Infection Prevention and Control Manual
  • what symptoms to look out for and where to seek advice if carers/family members themselves become too unwell to provide care;
  • what public health measures the family will need to take after the person has died, including quarantining for a further 14 days after last contact with the person and household cleaning required (refer to iinformation on Handling of deceased bodies with suspected and confirmed COVID-19);
  • how bereavement support can be accessed and provided;
  • if there are current restrictions around numbers of people able to attend funerals ;
  • the manual handling requirements;
  • cultural and social considerations should continue to be incorporated (e.g. Aboriginal and multicultural health, people with disabilities).
  • Cleaning requirements and considerations are in Appendix A.
  • Where possible, the number of carers and family should be limited. People at higher risk of severe COVID-19 should be discouraged from providing home care. This includes:
    • Aboriginal and and Torres Strait Islander people 50 years and older with one or more chronic medical conditions
    • people with chronic medical conditions
    • people 70 years and older
    • people with compromised immune systems

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What are the outbreak management considerations for facilities?

Please refer to:

What do the carers and families need to consider for home isolation?

  • The person’s carer and family are likely to have been exposed to COVID -19, and as such should follow applicable isolation guidance for:
  • Carers and family members should be informed about:
    • infection risks and the CEC - COVID-19 Response and Escalation Framework requirements for PPE and physical distancing - see Chapter 3: Response and Escalation Framework in the 19 Infection Prevention and Control Manual
    • what COVID -19 signs and symptoms to look out for
    • isolation requirements for themselves while the person is at home
    • expected isolation requirements for themselves in the weeks after the person is admitted to hospital or dies.
  • See appendix A for prevention steps for carers, family caregivers and household members of confirmed COVID-19 cases.
  • See information from Carers Australia on what social distancing rules mean for carers.

Are End of Life packages available for people requiring palliative care with a suspected or confirmed COVID-19 infection?

  • The non-clinical End of Life packages are delivered by eight Out of Hospital Care Service Providers across NSW. Clinicians making referrals for people with suspected or confirmed COVID-19 are required to contact the LHD Out of Hospital Care Relationship Manager to discuss the specific needs of the patient and their family/carers.
  •  Please contact the LHD relationship manager or MOH-OutOfHospitalCare@health.nsw.gov.au for further information.

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What are the in-patient care options?

  • The PCS and/or person, their carer and family may determine, in considering the above factors that care at home is not feasible.
  • Alternative arrangements should also be made where the person or family/carer decide they can no longer manage care in the home environment.
  • Local decisions will need to be made on alternative locations for palliative care. These locations may include COVID-19 wards in local hospitals or palliative care units (if available), and will be considered on a case-by-case basis, depending on need and local resources. Please note that residential aged care facilities will not accept new residents with COVID-19 infection.
  • When a person is admitted, actions should be implemented to ensure ongoing contact with carers and family members. Particular focus should be given to minimising isolation and distress for people in the terminal phase of care. The Public Health Unit may provide advice.

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What are the requirements for verification and certification after a person has died?

Verification of death

  • This is a clinical procedure and therefore has to be at the patient’s bedside. This can be done by a medical practitioner, a registered nurse who has achieved competencies in this assessment, or as a last resort, an ambulance paramedic.

Medical Certification of the Cause of Death and Cremation Certification

  • A Medical Certificate of the Cause of Death (MCCD) can be issued by a medical practitioner who has “referenced the cause of death with the health care record of the deceased” and has visually identified the body of the deceased by use of platforms such as Skype, FaceTime, clear digital photo or other video methods.
  • A Cremation Certificate can be issued by a medical practitioner who has “reviewed the dead person’s medical record” and has visually identified the body of the deceased by use of platforms such as Skype, FaceTime, clear digital photo or other video methods.

NSW Health PD2020_011 contains further information.

Handling of the deceased with COVID-19 by hospital and funeral staff will follow NSW Health Interim Guidelines.

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Appendix A: Prevention steps for caregivers and household members of confirmed cases

Please refer to the CEC videos and information on putting on and removing (‘donning and doffing’) PPE, when caring for patients with some infectious diseases such as COVID-19.

It is important to limit the household members present.

Caregivers and household members should follow the below advice to reduce their risk of infection.

Monitor symptoms

If you are a caregiver or household member and develop any symptoms of COVID-19  such as a cough, a sore or scratchy throat, shortness of breath, loss of taste, runny nose, loss of smell or a fever (37.5° or higher) you should get tested at a COVID-19 testing clinic, even if symptoms are mild. If it is a medical emergency, you should call 000. Tell the testing clinic that you are caring for a person with confirmed COVID-19. Use a surgical mask when in the presence of other people, or when attending medical care 

Wash your hands

Wash your hands often and thoroughly with soap and water for at least 20 seconds. You can use an alcohol-based hand sanitiser if your hands are not visibly dirty. Avoid touching your eyes, nose, and mouth with unwashed hands. Always wash your hands before putting on and after taking off PPE.

Wear Personal Protective Equipment and disposable gloves

Wear a surgical mask, gown, goggles and disposable gloves when you are in the same room as the person with confirmed infection, or when you touch or have contact with the person’s blood, body fluids and/or secretions, such as sweat, saliva, sputum, nasal mucus, vomit, urine, or diarrhoea.

  • Make sure your mask covers your nose and mouth at all times
  • Remove all PPE on leaving the room as per provided guidance, taking care not to contaminate yourself
  • Throw out PPE (disposable surgical masks, gowns and gloves) after use
  • Wash your hands immediately after removing the PPE.

Refer to  Chapter 8: Home Visits of the COVID-19 Infection Prevention and Control Manual  for guidance on household cleaning and disposal of contaminated items.

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Document information

Developed by

Health and Social Policy Branch

Consultation

  • Palliative Care Community of Practice
  • Primary and Community Care Communities of Practice
  • Community Health Community of Practice
  • Disabbility Community of Practice
  • Aged Care Community of Practice

Endorsed by

Dr Nigel Lyons, Deputy Secretary, Health System Strategy and Planning

Review date

28 June 2021

For use by

Palliative care professionals and other health care workers supporting people receiving palliative care and their carers and families.


Current as at: Friday 9 July 2021
Contact page owner: Health Protection NSW