Information and Instructions

• Termination of life support
• Palliative and end-of-life care
• Seeking the parent's views and wishes
• Legal consultation
• Contact with the child's carers
• Approval process
• After hours and urgent or emergency processes
• Organ donation
• Recording

Termination of life support

Where a child in the CEO's care is placed on life support, contact the medical practitioners involved with the child and request a report on the child's status and circumstances. This report may be provided verbally initially but should be followed up with written documentation from the hospital. You should seek the following information:

• Details of the child's current prognosis.

• Details of how the child came to be on life support. Clarify if there are any suspicious circumstances or if this an expected outcome related to the child's known condition.

• How the child came to be at the hospital and if the child was accompanied by anyone. If so, ask who is currently with the child.

• What decisions need to be made and what are the timeframes for making these decisions.

• Will the child remain at this medical facility, or will the child be relocated?

Provide details to the medical practitioner of the process you need to follow to seek approval from the CEO. Ask the medical practitioner to provide copies of any formal documents that need to be completed if the decision to terminate life support is approved. Make a clear plan for how documents will be signed and forwarded back to the hospital in the required timeframe. This plan may need to be negotiated over several calls, as you should consult with Legal and Business Services before making any commitment on timeframes. Confirm that the hospital will accept copies of forms sent via fax or email. If they won't, ensure you have specific instructions on what format the hospital requires the documents to be in and have a plan for how to get the forms to the relevant medical staff. 

Part of any plan with the hospital should include consultation with the parents.  Every case will be different, and each family will have different needs, but all have a right to be included and to be present where this is possible. The hospital will need to plan if security is required, so planning how to engage with the parents in this process.

 

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Palliative and end-of-life care

Where a child in the CEO's care is diagnosed with a terminal disease, illness or medical condition that is advanced with no reasonable prospect of cure and is likely to lead to premature death (within days, weeks, months or sometimes years), palliative and end-of-life care for that child will need to be managed. The primary treatment goal in palliative care is to optimise quality of life and to manage pain and discomfort associated with the child's illness. This process can be distressing for family members, as the focus is no longer on curing the child or helping them to 'get better'.  

The palliative care team for the child will be made up of varied allied health and medical professionals, all of whom have an important role in contributing to the end-of-life goals for the child. The child (age and capacity permitting), their parents, siblings, family and other significant people in their lives should be part of this planning process and have an opportunity to share their views and wishes.

As with the decision to terminate life support, where a child is in care under protection orders (until 18 or time-limited), the CEO has parental responsibility and must be involved in end-of-life decisions regarding the provision of palliative care and the withholding or withdrawing of medical treatment.  These decisions are made in consultation with treating medical practitioners, family and the child. This decision is not delegated to another Departmental officer.

If the withholding or withdrawal of treatment is considered to be in the best interests of a child in care and reasonable in all the circumstances and having regard to the child's condition, then the CEO may be able to lawfully refuse treatment and the child given palliative treatment. Such issues may arise in end of life planning, such as where it is proposed that health practitioners not provide life-saving treatment in the event of a cardiac arrest or other life-threatening event. However, the CEO's power to refuse or withhold treatment is not unlimited.

If there is a question or disagreement (between the medical practitioners, family, child or CEO) about whether the decision to withhold /withdraw treatment or provide palliative care is in the best interests of the child, the decision needs to be made by the Supreme Court (or Family Court of WA where appropriate).

End-of-life decisions should balance the likely benefits with the detriment to the child, such as pain, discomfort, quality of life, time in hospital away from family and friends, and shortened lifespan.  Other examples of end-of-life decisions are:

• At what point should all medical treatment directed towards the preservation of the child's life stop?

• Should the child receive CPR if they go into cardiac arrest?

• Should the child be placed on any mechanical life-sustaining treatment where that treatment is likely to be futile?

Ask the treating medical practitioners to provide any formal documents as early as possible when palliative care is raised for consideration. Consult with Legal and Business Services immediately, as decisions about palliative and end-of-life care are difficult and will be made on a case-by-case basis (see below for contact details).

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Seeking the parent's views and wishes

 

If the child identifies as Aboriginal or Torres Strait Islander, you must consult with the Aboriginal practice leader or other relevant senior Aboriginal staff members. If the child is from a culturally and linguistically diverse (CaLD) background, you should consult with the Principal Policy and Planning Officer, Cultural Diversity, SCPU: SpecialistChildProtectionUnitGeneralEnquiries@communities.wa.gov.au It is important that family have an opportunity to provide information on any cultural practices they wish to engage in with or for the child.

If you are advised of a prognosis where there is no reasonable expectation the child can survive and has been placed on life support, or that a child has been diagnosed as terminally ill and requires palliative care, consult with the TL immediately. Work with the relevant staff to consider how to tell the child's parents if they are not already aware of the situation.

Make every attempt to contact the parents to let them know about their child's condition and to talk through the medical advice with them or facilitate their contact with the treating medical practitioners.

When you plan how to inform the child's parents, consider the following factors:

• Is this information going to be a surprise to the parents? Did the child have an existing serious illness or was this an unexpected tragedy? Unexpected circumstances such as a suicide or traffic accident will be particularly distressing for the parent to hear.

• Was the child deliberately injured or hurt by anyone? Was it someone known by the parents? If so, the parents are likely to respond with a range of heightened emotions.

• Do the parents have the capacity to get to the hospital to be with their child? Will they need support to travel? Will they need on-going transport support if the child is receiving palliative care?

• Are the parents likely to understand the information you are giving them? If they speak English as a second language, ask them if they would like an interpreter. If they have a cognitive disability, mental health issue or are intoxicated, you should be prepared to provide the information several times in easy to understand language.

 

If you are unsure if an interpreter is required, you should ask the parents if they would like one. Have the interpreter on the telephone ready – they can be dismissed if not required. Explain that you have very important medical information about their child to tell them and it is very important that they understand. Do not assume a person will comprehend English at the same level during a traumatic event as they usually do. For more information please refer to  Chapter 4.2 Language services - booking and payment.

Provide parents with as much support as possible, ensuring they have practical assistance to link in with their family and friend network and the hospital social work department. Where possible the case worker should attend the hospital. ​

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Legal consultation

Consult with Legal and Business Services for advice as soon as possible in every case related to end of life decisions. For urgent legal advice email General Counsel, Advisory Services and Legislation at Tara.Gupta@communities.wa.gov.au (mob: 0419915876) and 'cc' the Chief Legal Officer on Samantha.Martella@communities.wa.gov.au and the Specialist Child Protection Unit on SpecialistChildProtectionUnitGeneralEnquiries@communities.wa.gov.au

Given decisions may need to be made quickly, request legal guidance as early as possible. Where a child has a life-limiting or terminal illness, you should consult with Legal and Business Services well in advance of decisions being required.

If there is controversy about the proposed termination of life support or other end-of-life decisions, or disagreement (between the parents or family, the child, treating medical practitioners or the CEO) about the manner in which it should proceed, or if consent is withheld, please advise Legal and Business Services of this as soon as possible as an application will likely need to be made to the Supreme Court (or Family Court of WA where appropriate) to determine the best interests of the child.

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Contact with the child's carers

If the child's carer is not already aware of the situation, make contact with them and involve them in the process. This will look different for every child.

Where a child has had a stable care arrangement and has developed a strong relationship with the carer, it is appropriate for the carers to have an opportunity to say goodbye to the child, and to be advised of what decisions are being made and why. This is particularly true where the carers will be caring for the child during the end-of-life phase.

If the care arrangement is relatively new, the carer may not feel comfortable staying or being at the hospital. You should ask the carers for their views and wishes, and balance these with the needs of the child and the family.

Where there is, or may be, conflict between the carer and the parents or anyone else, consult with the TL and make a plan to mitigate any risks.

The hospital should be provided with any relevant information about the family dynamics. The social worker should be included in planning, as they may be able to assist with practical strategies for managing conflict in the hospital. It should be assumed that tensions may arise and should be responded to with a trauma-informed approach.

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Approval process

Complete the 'Termination of Life Support' template from the 'templates' tab in the child's '360 degree view' in Assist. Record all the relevant details to the template submission for approval.

Formal documents from the hospital or medical facility will need to be completed and signed as directed by the medical practitioner if the decision is made to terminate life support.

To complete the submission process, follow these steps:

1. Submit written documentation to TL for quality assurance. The TL will submit this to the district director (DD) for endorsement. Where there are time pressures and the DD is not available, the assistant district director (ADD) may approve submissions and documentation

2. The DD considers the submission and, if appropriate, endorses and forwards it to the relevant executive director (ED) and regional executive director (RED) for consideration.

3. The ED or RED considers the submission, and if necessary, seeks advice from General Counsel.

4. If approved, the ED or RED endorses and forwards the submission to the CEO (Director General) for consideration and approval and 'cc's' in the Deputy Director General, Community Services.

5. The CEO considers the submission, seeks written advice from General Counsel and if appropriate, approves it.

6. If approved, the CEO signs the relevant legal documentation.

7. The executive assistant forwards the signed submission and documentation to the district office.

Consult with the TL, SPDO, Legal and Business Services and the DD to determine how best to document decisions made during the child's palliative care.

If you are in a regional or remote area with limited internet and/or electronic communication facilities, seek support from the nearest district office and/or the Statewide Referral and Response Service (SRRS) if support is required afterhours.

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After hours and urgent or emergency processes

After hours

If consent is required after hours, seek immediate legal advice from General Counsel at Tara.Gupta@communities.wa.gov.au (mob; 0419915876) and 'cc' in the:

Chief Legal Officer  Samantha.Martella@communities.wa.gov.au and the Specialist Child Protection Unit  SpecialistChildProtectionUnitGeneralEnquiries@communities.wa.gov.au.

Any plan must be approved by the relevant DD. If they are not available, contact the SRRS, who will contact the SRRS DD.

Where action may be required after hours, submit an Action Request to the SRRS. Provide all relevant legal or formal documentation required to manage the situation after hours, and details of key decisions and consultations. See Chapter 2.2 After-hours Action Request for further information.

Where the situation arises afterhours, follow the processes for gathering information and planning engagement with the parents set as detailed above, in addition to seeking immediate legal advice.

Urgent or emergency situations

In urgent or emergency situations such as an accident or unexpected death, consent to terminate life support may be required quickly. In this instance:

• Consult with the medical practitioners and follow guidelines noted above.

• Seek immediate legal advice as noted above.

• Consult with the TL and DD or DD SRRS if after hours.

• Contact and continue to liaise with the parents and carers.

• Contact the DD of the district managing the case for the child who will in turn must contact the relevant ED or RED. The ED or RED will then contact the CEO (Director General).

Provide a clear summary of the situation to the CEO with details of what is required from them and written advice from Legal and Business Services (this can be provided via email or text).

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Organ donation

Ask medical staff at the earliest opportunity if:

• they are likely to request consent for organ donation,

• the child is carrying a registered organ donation card, or

• the child has decided to donate their organs and expressed this wish.

The family may have strong feelings about this issue, so consult with the Legal and Business Services as soon as possible.  

Organ donation in WA is regulated under the Human Tissue and Transplant Act 1982 (HTT Act). A designated officer for a hospital may authorise the removal of tissue from a person who has died:

• where having made enquiries, is satisfied the deceased during their lifetime expressed the wish for or consented to the removal of tissue after death

OR

• where after making enquiries, is satisfied there is no reason to believe that the deceased person had expressed an objection to the removal of tissue from their body after death (for the purpose of transplantation to a living person, use for other therapeutic, medical or scientific purposes) AND the designated officer is satisfied that the senior available next of kin consents to the removal of tissue (s.22 HTT Act).

 

The wishes of the deceased person expressed in their lifetime will prevail over the wishes of the senior available next of kin. Where there are 2 or more senior available next of kin, an objection from any one of them to the removal of tissue will prevail over the wishes of the other senior available next of kin.

'Senior available next of kin', in relation to a child, means the first person in order of priority who is available at the time as follows:

(i)  if the child has both a spouse and de facto partner who has attained 18 years, the spouse or de facto with whom the child is living

(ia) the spouse or de facto partner who has attained 18 years, of the child;

(ii)   a parent of the child;

(iii)   a brother or sister, who has attained 18 years, of the child;

(iv)  a guardian of the child (Note – this will include the CEO).    

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Recording

Scan and save all documentation to the child's case file and update the 'Person' details and the Quarterly Care Review in Assist.

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