Aim 

Background

Communication with the Child and their Family

• Advanced Care Planning
• Talking about death
• Talking with a child about their illness
• Sibling support
• Medical discussions prior to the child’s death

Place of Care

• RCH Bereavement Rooms
• Home
• Very Special Kids

Referrals to support service

• Pastoral Care
• Palliative Care
• Social Work
• WADJA Aboriginal Family Place
• Music Therapy
• Interpreting Services
• Very Special Kids (Bereavement Care)
• External Community Supports

Symptom management

• Subcutaneous Devices

General care

• Preparing families for dying process

Memory making

Spiritual care/rituals

At the time of death

• Medical Considerations

• Nursing Considerations
• Ward Clerk Considerations

After the death

• RCH Death of a Child checklist
• Care of the body: Coronial vs. Non-coronial
• Spending more time after death
• When it comes time for the family to leave
• Transfer to RCH Mortuary
• RCH Mortuary/Body Hold Process
• Funeral directors

Caring for yourself

• Can I make contact with the family?
• Can I go to the patient’s funeral?
• What do I do if a family attempts to make contact with me?
• Where can I get support for myself?

Other special considerations

• Organ/tissue donation
• Post-mortem examination/autopsy
• Post-mortem and the child with suspected metabolic condition
• Post-mortem tumour donation
• Suppression of lactation
• Family presence during active resuscitation
• ECLS Withdrawal
• VAD Withdrawal

RCH Additional Links

References

Aim

To provide guidance on what is expected when a child’s death is imminent at the Royal Children’s Hospital. This encompasses nursing, allied health and medical care, memory making and resources that can be provided to a child and their family in both coronial and non-coronial cases. This document should be read in reference to the RCH Death and Bereavement Procedure (RCH>Policy & Procedures > Death and Bereavement).

Background

The Royal Children’s Hospital cares for approximately 100 inpatient and 150 outpatient deaths per year. The care required for a dying child and their family is complex and challenging for the family, their community and for the health care providers involved. It requires a multidisciplinary approach with clear communication.

Irrespective of whether the death is sudden or expected, the care that is provided to an individual and their family can help minimise the immediate and long-term distress and grief commonly associated with dying and death. This healthcare should encompass the total care of the dying child’s body, mind and spirit and that of their family, respecting any cultural considerations and family requests wherever feasible.

Notably, this care may be difficult to provide when the death is compounded by complex circumstances. This may include when complex medical treatment is being provided (i.e. active resuscitation, ventricular assist devices), when there are time constraints surrounding the death (i.e. organ donation after circulatory death, post mortem time frames) or when there are legal requirements (i.e deaths referred to the Coroner’s Court). However, when families are involved in decision-making, kept informed and allowed opportunities for questions, holisitic family-centered healthcare can still optimised.

Communication with the Child and their Family

The care of a child at end-of-life involves many potentially difficult conversations.

It is very important to ensure the family feels heard, cared for, and respected, and that the information communicated between the child, family members and healthcare workers has been understood. Open and honest communication is essential to empower and support the family and offer an opportunity to share and clarify goals of care and other information. Health professionals who are uncertain about how to best approach these conversations should ask for assistance from a senior staff member.

Advanced Care Planning

Advance care planning (ACP) is a process of discussions between families and health care providers about preferences for care, treatments and goals in the context of the patient’s current and anticipated future health.

A guide to paediatric ACP, including the Victorian government policy, a framework for understanding the stages of ACP and a practical discussion guide for professionals wishing to undertake ACP with their patients is available as documents and as a handy portable mobile application: These resources can be found here (RCH>Advanced Care Planning).

Advance Care Plans, with comprehensive details about discussions that have been undertaken with the family, can be documented in the ‘Advance Care Plan’ tab or through the ACP document link at the bottom of the ‘Resus’ tab on a patient’s EMR profile. Additionally, Partial Resuscitation orders can be placed as an order set through EMR.

For families, the ‘Caring Decisions’ resource (see below) encourages reflection on their child’s experience of their illness and offers advice about navigating the process of ACP from a family perspective.

Talking about death

Health care professionals and families may wish to involve children in discussions about their illness. Families and medical professionals may benefit from resources to help them find ways to enable their child to discuss their serious illness or even their death. 

A number of resources exist to help guide these conversations;

• The Conversation Project - (Coversationproject.org) is a wonderful resource for families, created by the parents of children who have died.  
• Thinking Ahead Discussion Guide - (RCH>Advanced Care Planning>Discussion Guide)- within the Advance Care Planning resources, there is helpful information on how to talk with a child about their illness.
• Caring Decisions – A handbook for parents facing end-of-life decisions for their child.
• Palliative Care Australia - A Paediatric Palliative Care Guide (Palliativecare.org.au/children)
  

Talking with a child about their illness

Within the Advance Care Planning resources, there is helpful information on how to talk with their child about their illness. This can be found here (RCH>Advanced Care Planning>Discussion Guide>Including the child).

Sibling support

Parents often express concerns about how to talk to siblings. There are a number of resources that you can share with parents. 

Death: how to talk about it with children (Raising Children Network) (https://raisingchildren.net.au/school-age/connecting-communicating/tough-topics/death-how-to-talk-about-it)

Palliative Care Australia have printable fact sheets available in several languages; Fact Sheet – Sibling Support (Palliativecare.org.au/sibling-support).

Referrals to consider include;

• Very Special Kids – provide a comprehensive Sibling Support Program for families in their services.
• Social Work Department - RCH Social Work provide a Family Bereavement Support Program. Further information on this program can be provided to the family through this downloadable brochure. Families are usually sent an invitation to attend the Family Bereavement Support Program 3 months after their child’s death, but families are welcome to make contact prior to this.
• Child Life Therapy (CLT) – Provide resources and support to families, especially siblings, about end of life. 
  

Medical discussions prior to the child’s death

Families often value the opportunity to discuss medical and research options that might give them additional information about their child’s illness or altruistically help other children in similar circumstances. They also benefit from an early indication of any legal issues that may impact on the child’s disposition after death. These early discussions may include:

• Post-mortem examination of the child / autopsy
• Organ and tissue donation
• Tumour donation
• Coroner’s Court referral for report/review

Discussing these issues in advance of the child’s death allows families the time to ask questions and make informed decisions. RCH Education and Donate Life run Difficult Conversation workshops throughout the year which include training on understanding and skils in having medical conversations about end of life. Further information on Post-mortem and Organ/Tissue Donation can be found here.

Place of Care

Families should, where possible, be enabled to choose the location of end-of-life care for their child.  Many families presume their child will have to die in hospital. Families need to be informed of their choices and what supports are available to them. 

The options for place of care include the child’s home, a paediatric hospice, the RCH bereavement suite and the hospital ward which should be considered by the child’s multidisciplinary team prior to offering them to a family, as there may be logistical constraints that may limit the provision of adequate supports in certain sites.

If the preferred location of end-of-life care cannot be facilitated prior to the child’s death, it is still often possible to transport the child’s body to the preferred location after death. Alternatively, families may wish to keep their child in the room where they have been cared for on the ward/unit for a period of time after the child has died.

Place of Care options include:

RCH Bereavement Rooms

A dedicated bereavement room at RCH may be available for end-of-life care or post-death care in both coronial and non-coronial cases. These rooms provide a more home-like setting, to enable families to spend time with their child in a less medicalised environment. Staff must ensure the location is available (and sufficient staffing can be provided) via the ward NUM (in hours) or Nurse Hospital Manager (after hours) before offering it to a family to avoid disappointment. RCH aspires to provide these resources to all patients, but staffing and logistical issues can impact on availability.

RCH has two Bereavement Rooms that may be utilised by all patients; these are staffed by the bedside nurse and Social Work:

• One connected to the Body Hold (Mortuary/Anatomical Pathology) on the Lower Ground Floor (kitchenette, lounge room, no bathroom facilities). This room is more suited to viewing of a child’s body after death.The room is not equiped for end of life care. 
• One on Ground Floor (kitchenette, bathroom, lounge room, double bed) near the silver lifts.

On Butterfly there is an additional family bereavement room where a neonate and their family may spend time together in privacy with less clinical surrounds (family bed available). This is primarily utilised for neonates from Butterfly and on occassion for neonatal deaths that are admitted via the Emergency Department.

More details can be found here: Bereavement Facilities Policy and Procedure Guideline (RCH>Policy>Bereavement).

Please note as of July 2020 there have been a number of changes to the use of these rooms during the COVID pandemic. Please check for the most up to date recommendations and policies via the RCH Intranet.

Home

Children who have palliative goals of care may elect to return home for end-of-life care. Those who are well enough may be transported home in the family car or by patient transport. For children who are expected to die at home, it is imperative to ensure the family are introduced to the Victorian Paediatric Palliative Care Program so that they receive appropriate supports at home.

These may include:

• Symptom plans and medications, including parenteral if it is likely to be needed
• Support services for phone and out-of-hours advice ie community palliative care
• Equipment
• Respite

For children with intensive care management that is deemed to be no longer appropriate, in non-coronial circumstances it may be possible to transfer the family back to their home for withdrawal of life support. This requires clear planning and organisation of resources but can still often occur in a time-critical manner.

The Victorian Paediatric Palliative Care Program should be involved in discussions when considering withdrawal at home, to ensure community resources are utilised for ongoing support of the family. In circumstances where the child is intubated and ventilated there is a PICU resource that can be accessed here (PICU Intranet>Planning for transfer home). A family may wish to take their child home after their death. More information on this can be found  here.

Some considerations for PIPER transfer for withdrawal of life-sustaining therapies at home:

• PIPER are not able to provide medical staff for transfers. This need to be provided by the referring unit.
• PIPER staff are not able to stay at the home once the transfer is complete.
• The child must have intravenous infusions and mechanical ventilation ceased in the PIPER vehicle prior to transfer into the home. The transfer from the vehicle to the home is usually effected by hand-ventilating the child during transfer and ceasing ventilation on settling in the home.
  

Very Special Kids

In both coronial and non-coronial cases a child and their family may be transferred to Very Special Kids (VSK), a children’s hospice in Malvern, for their end-of-life care. There is accommodation on site for families, fully trained medical and nursing staff available and a cool room for a family to have extended time with their child after their death. Please discuss with your team before offering, and ensure VSK has the capacity to accept a patient before offering the resource to a family. Click here for the transfer to VSK checklist and here for further information of VSK. 

Referrals to support services

There are a number of options that can be offered to a child and their family before, during and after a death. Where time permits, it can be helpful to discuss these with the family early so that we can provide an environment that best suits the family and their situation. Patients may be referred to relevant support services through ‘Orders’ on EMR, by landline and/or pager. All services are available during business hours and many are accessible afterhours, through the Nursing Bed Manager, via the relevant Associate Unit Manager (AUM). 

Pastoral Care

Religious and non-religious families may find spiritual care support comforting. Pastoral and Spiritual Care is available during normal business hours and after hours on an “On Call” basis. Families may wish to participate in a religious ceremony with their child, such as a baptism or blessing. Non-religious families may wish to utilise a personalised ritual such as a naming ceremony or other spiritual practice all of which Pastoral and Spiritual Care staff are able to facilitate.

If a family wishes to have their own faith leader present the team are able to assist families in facilitating communication with the appropriate persons. Pastoral and Spiritual Care (RCH>Pastoral Care) can be accessed through RCH switchboard (after hours), the pager system - 6094 (Normal Hours) or making an order using the EMR for non-urgent referrals at any time. If using the pager or switch please also enter an order in the EMR so that referrals are recorded efficiently.

Palliative Care Team

The Victorian Paediatric Palliative Care Program (VPPCP) is an alliance between RCH, Monash Health and Very Special Kids. The team is made up of specialist doctors, nurses, social workers, occupational therapist and a pharmacist. The program aims to ensure children and adolescents with life-limiting conditions and their families receive the best possible palliative care by providing information, advice and support to families and the health professionals caring for them. Palliative Care can assist in advice of symptom management, end-of-life-care and community resources. Palliative Care (RCH>Palliative Care>Contact us) team can be accessed through EMR, order or phone. 

Social Work

Social workers are skilled at engaging families in a range of crisis situations and draw on grief and loss theories to assess and respond to families at the end of a child’s life and after death. 

Social workers provide emotional support, counselling, psychological first aid, practical assistance, information and advocacy.   Social workers assess for risk of complicated grief associated with the presence of emotional and mental health issues, familial conflict, material disadvantage, and social difficulties. 

• Referral to Social Work is made by calling x56111 and placing an order in EMR. During business hours the allocated unit social worker will respond. 
• After Hours Social Work is available from 4pm – midnight on weeknights and from 8am – 8pm on weekends.  Contact Ascom x52443.
• Social Work is also available in the Emergency Department from 8am to midnight on weekdays and 10.30am to midnight on weekends. Contact Ascom x52853.
  

WADJA Aboriginal Family Place

A culturally sensitive service available for Aboriginal and Torres Strait Islander children and their families.

When an Aboriginal family member dies, cultural obligations and expectations about grieving are important considerations. It is essential that a Wadja staff member be involved in the care of dying Aboriginal children and bereaved families.  

Some principles to keep in mind are:

• ‘Sorry Business’ is of great significance to Aboriginal families and is a period of grieving where cultural responsibilities need to be undertaken by family members.
• It may be of great importance for Aboriginal families to make contact with extended family members or community members during these times.
• Families may or may not need to spend time alone with the child’s body.

Wadja can be contacted directly through phone call, EMR order or via switchboard, for further information click here (RCH>Wadja Aboriginal Family Place>About Wadja)

Music Therapy

Music Therapy at RCH is part of Allied Health and consists of a team of 8 Registered Music Therapists who provide clinical music therapy services to children and adolescents with a range of medical conditions.  Music Therapists are registered with the Australian Music Therapy Association.  Services are provided to inpatients only. Referrals can be made through the EMR.

The Music Therapy team support infants, children, adolescents and young adults using targeted therapy sessions to assist with aspects of their hospital experience.  At end of life, Music Therapy can provide opportunities for meaningful family moments and supports quality of life, comfort and symptom management.  This is achieved through face-to-face services and resourcing. Music Therapists work with patients and families to address their individual needs. For further enquiries please email: musictherapy@rch.org.au

Interpreting Services

RCH can provide interpreters for families when English is not their first language, as well as Auslan or other sign language services for families hard of hearing. 

If an interpreting service is required in an emergency, or with less than 48 hours notice, please phone the Interpreting Office during business hours (Monday - Friday 8.30am - 5pm) on extension 55998. Outside of hours please contact switchboard for telephone interpreting. Face to face interpreting can be approved by the Nursing Hospital Manager in the cases of an imminent death. 

For further information on RCH interpreting services click here (RCH>Operations>Clinical Support Services>Booking an interpreter), and here (RCH>Immigrant Health>Clinical>Working with Interpreters) for advice on how to optimise working with an interpreter.

Very Special Kids (Bereavement Care)

Very Special Kids cares for children with life-threatening conditions by providing a children’s hospice and professional services to families. Support can start from diagnosis all the way through to bereavement.

Services offered include;

• Counselling and emotional support
• Sibling support
• Trained family volunteers
• Bereavement support
• EOL care at hospice

For referrals please call 03 9804 6222, and for further information click here (RCH>Palliative care>Very Special Kids children's respite and hospice service).

External Community Supports

There are a number of not-for-profit (NFP) community organisations and networks for bereaved families. Families may find they want to explore these through social media or from recommendations themselves, however some may ask staff for advice.  

Below are a few NFP groups that families may wish to explore:

• Australian Centre for Grief and Bereavement Counselling and Support Service (www.grief.org.au) for families across Australia and their families who need assistance following a death.
• The Compassionate Friends Victoria (www.compassionatefriendsvictoria.org.au) for support for families and their extended relatives following the death of a child.
• Heart Kids (www.heartkids.org.au) for support of families of children with heart conditions.
• National Centre for Childhood Grief (www.childhoodgrief.org.au) for support of bereaved children aged 3-18years.
• Red Nose Grief and Loss (www.rednosegriefandloss.org.au) for support of families after the loss of their early pregnancy, stillborn, newborn or child.
• Red Kite (www.redkite.org.au) for support of families of children with cancer.
• Road Trauma Support Services (www.rtssv.org.au) for families impacted by a death as a result of a road trauma.
• Wings of Hope (www.wingsofhope.org.au) for support of families impacted by suicide.
  

Symptom management

Managing symptoms at end-of-life is very important both for the child and family.

Symptom management strategies with both pharmacological and non-pharmacological options can be found in the RCH clinical handbook and on the RCH Palliative Care website (RCH>Palliative Care>For Health Professionals). 

Butterfly (NICU) have a comprehensive document for symptom management of infants within an acute care setting which can be found here (RCH>Neonate Intranet>Palliative Care Formulary). Please note that the dosing may not be suitable for patients outside of an intensive care setting. Please discuss with the palliative care team if you are unsure.

Please discuss with your medical team if you are concerned your patient does not have the adequate options to maintain comfort. A referral to Palliative Care may assist you in further providing symptom management pathways for your individual child. Completing the EOL EMR Order Set can help you assess whether your symptom control measures are appropriate.

Subcutaneous Devices

The preferred route of medication administration in paediatric palliative care is oral. However, there may be occasions when this is impractical or undesirable. In this situation, the use of a subcutaneous (SC) or intravenous infusion using a syringe driver to deliver medications may be necessary.

BD Saf-T-Intima –SC device utilised at end of life.  (please see SC Clinical Practice Guideline)

Niki T34 –syringe driver utilised at RCH to deliver SC medications. If nursing staff are not familiar with this pump please utilise normal ward pumps. Further information on the Niki T34 can be found here (RCH>Palliative Care>Paed pall care link>Clinical Resources). 

General care

End of life care is a highly stressful situation and it is important to;

• Provide regular updates to the family and allow them time to ask questions
• Ensure a clear symptom control and treatment escalation plan is prepared by your medical lead.
• Regularly update your medical and nursing lead on the child’s condition and how effectivly the symptom management plan is working
• Minimise unnecessary observations, monitoring and interventions
• Optimise comfort care (ie. position, music, lighting, warmth)
• Assess pressure care - poor circulation, weight loss, decreased activity can increase risk of pressure injuries
• Protect skin with cushioning, moisturising, massage and regular position changes
• Pressure mattress, sheepskin, skin creams and dressings may also be required
• Perform regular mouth care

Note: EOL Order set – is available on EMR to help ensure nursing staff attend to this important general care. There is also an EMR ‘Death of a Child’ Smartform to help prompt all multidisciplinary aspects of end of life documentation.

Preparing families for dying process

It is important to be aware and help prepare the family for the physiological changes (Palliativecare.org.au/What to expect in the final days) that will occur over time.

These may include:

• Heart rate changes (tachycardia, bradycardia, arrhythmias)
• Significant breathing changes (cough, rapid, laboured, irregular breathing, slowing with apnoeas, noisy or obstructive breathing, extra secretions nasally and orally – it is important to explain that the child may be unaware of these breathing changes but this can be distressing for family members to witness)
• Temperature decreasing, peripherally and then centrally
• Skin discolouration
• Incontinence (both urinary and faecal)
• Muscle tone (initially reduce then becoming very stiff after death).

A useful resource for families is the fact sheet – What to expect in the final days (avaliable in several languages).  

Memory making

Please note that for a death that is refered to the Coroner’s Office, permission to take ink prints or locks of hair (or remove medical equipment) must be sought from the Coronial Office prior to commencement of these tasks.

Please see the Memory Making CPG for further information on what families can be offered and step-by-step advice on how to make ink prints and clay casts.

Spiritual care/rituals

Spirituality and rituals can assist families in coping with the death of a child; they provide a way of making meaning and guiding grief in very stressful and confronting situations, as well as in times of deep sorrow, when a child’s death has been anticipated for some time.  Rituals and spirituality may be religious or non-religious.  If a family would like to explore possible rituals, the Pastoral and Spiritual Care Team can assist them in planning and practice.

The Pastoral and Spiritual Care Team (RCH>Pastoral Care) are available 24 hours a day and can assist in families to access a relevant Religious leader (or the family can invite their own) to visit. Sacred or Spiritual texts such as Bibles, the Quran and other texts can be made available to parents and families upon request.

Additional resources to fulfil families’ spiritual and ritual needs are available on PICU Ward, with the Pastoral and Spiritual Care Team or through Victorian Paediatric Palliative Care Program:

• sterile water/brass container for washing a child
• oil stock for anointing and blessing
• flameless candles
• icons are available for orthodox families to have with them on the ward or in the bereavement areas.
• White ‘Angel gowns’, which fit children <15kg
• the ‘Cuddle Cot’, or 'Techniice', are two cooling products to help preserve a child, if families wish to spend a longer period with the child after death.

Additional documents that may be of assistance to staff supporting families from diverse backgrounds are available –Queensland Health’s Cultural Profiles Document (see additional links) provides useful information regarding the care of patients, as well as potential issues within the healthcare system.

The family’s spiritual needs and preferences should be openly communicated as early as possible amongst the health care team (including medical, nursing, social work, palliative care, pastoral care and the unit management team), to ensure that any variance from the family’s wishes is minimised and any logistical needs can be anticipated and planned for.

At the time of death

Medical considerations

Coming soon. CPG page to be updated. 

Nursing considerations

There are a number of options for how these final moments for the family and their child are spent. Some parents may wish to hold their child or lay next to them in a bed. For some families they will wish to have only parents and siblings present and for others they will wish to have extended family and friends there too. For some cultures not being present for the death will be a sign of respect or what is expected. Some families will not know what they want to do which is why it is important to talk with them. Please speak with your senior colleagues if you have any questions on what can be offered.

Other considerations include;

• Ensure relevant support services are notified and accessed to help support child and their family. Check in on your patient’s family and ask if they have any questions. It is okay not to know all the answers, seek the support of your colleagues to answer any questions you can’t.
• Document care given to the child and their family and commence the RCH Death of a Child Smartform on EMR.
• Clarify with the medical officer whether the death is reportable. If the death will be a coroner’s case DO NOT remove any medical apparatus (ie. endotracheal/tracheostomy tubes, nasogastric tubes, peripheral/intraosseous/central lines, urinary catheters, chest drains etc) without confirmed permission from the Coronial office.
• There are specific expectations for stabilising a patient after Brain Death (See page 98 – PICU Guidelines ‘Death - Organ Donation’), or, Organ Donation After Circulatory Death

Further indepth information on the role of the nurse during a death can be found within the RCH Death and Bereavement Policy and Procedure.

Ward clerk considerations

Information for how to document a child’s death on IBA can be found here. Please contact the Ward Clerks in Emergency Department for any assistance if after hours.

After the death

RCH Death of a Child checklist

Please complete a RCH Death of a Child checklist which is found via the ‘RESUS’ tab on each patient’s profile on EMR. It is a comprehensive list of reminders and provides space to document what has been offered and completed. Any member of the care team can fill in their relevant sections and can be edited by multiple health care professionals. 

Care of the body: Coron vs non-coronial

In a Coronial case

• The family can still utilise the Bereavement Suites and have time with their child after the death unless there is a set time frame (due to Autopsy or request by Coroner’s Office), however the body and family cannot legally be left alone after the death. Social Work, nursing or a medical representative must stay within visual sight at all times. It may be important to remind family that this does not need to be the last time they see their child, viewing of the body can occur at the Coroner’s office or with their chosen funeral home.
• Nursing Bed Manager/Hospital Manager – all paperwork must be complete before Coroner’s Office called to pick up body. Please discuss with your AUM to facilitate realistic timeframes (all documentation must be on a CD before transfer to Coroner’s Office).  

In a Non-coronial case

• As discussed earlier, there should be no timeframe set on families spending time with their child. Time spent with the child may be at the bedside, in one of the RCH Bereavement Suites, Very Special Kids or at home prior to eventual transfer to either RCH Mortuary (Body Hold) or funeral home. The family may wish to wash their child and dress them in a special outfit during this time. When families are finding it difficult to leave it may be important to remind them that this won't be the last time that they are able to see their child. They are be able to arrange a viewing with the funeral director prior to burial. Viewing of the child at the hospital is possible with the support of the Social Work team but must be discussed with Social Work before being offered.

Spending more time after death   

The family may take a child of any age home from the hospital after death, unless there are Coronial restrictions. The paperwork that must be completed can be found here. The printable parent information sheet can be found here. The hospital does not offer embalming services, but does recommend that a family speak with their chosen funeral home if they wish to keep the child’s body for a prolonged period of time. 

After death cooling, to help best preserve a body, should be considered in any circumstance when a child will not be taken to the Body Hold or collected by Funeral Directors within four hours post death. There is a cooling product, located in Body Hold, Lower Ground Floor, called Techniice to assist in the optimal cooling of a child of any age. More information on it's use can be found here( Techniice CPG link). There are also two portable cooling blanket and baskets (Cuddle Cots) available from the Ground Floor Bereavement Suite, which a family may use for a neontate. Further information about the lending, care and the returning of the Cuddle Cot can be found here.

A family may choose to have an extended time with their child in one of the RCH Bereavement Rooms or at Very Special Kids, if available, which can also accommodate extended family members. Further information on availability, booking and the use of these rooms can be found here.

When it comes time for the family to leave

For parents/families, physically leaving their child (often at the hospital or in the hands of the funeral director) can be a heartbreaking and agonising moment. Staff caring for the family can assist greatly at this time.

Some things to consider include;

• Re-assuring the parents that you will continue to care for their child once they leave.
• Walking with the family to their transport home
• Ensuring the family is safe to drive, and if concerned liaising with Social Work
• Sorting out car parking issues prior to parents/family leaving (please discuss with Social Work if required).
• Ensuring parents have a contact number – for any questions 

Transfer to RCH Mortuary/Body Hold

Transferring the child’s body to Body Hold can be a very distressing process for some staff members. It is important that a staff member never feels pressured to do this without support. Family members are not allowed into the Body Hold area, ensure the family have adequate support if they are present when you are leaving with the child. This may be with extended family members, nursing or allied health staff supporting the family. 

Often staff find carrying neonates or infants to Body Hold comforting and less confronting for families. Others prefer to place them in a cot or pram (this can be borrowed from the Rosella Basement Storeroom, or sometimes from Koala Storeroom). An older child will need to be transferred to Body Hold (on Lower Ground near the silver lifts) on a patient bed/trolley. 
Please discuss the best method of securing the path to Body Hold with your AUM. It may be done through ‘a guard of honour’ - nursing and medical staff ensuring exits are clear of people. Or through the use of the portable blinds, located in Rosella, to mask off passageways. Note that some families do have access the ‘Silver Lifts’ and may be present in the hallways. 

RCH Mortuary/Body Hold Process

In accordance with the Department of Health and the Coroners Court of Victoria, there is a standard of care we are expected to provide which includes correct labelling, handling of documentation, respectfully wrapping of a body (including the covering of the face) and placement in a body bag. This helps ensure the correct identification, processing, best preservation for future care of the body and provides optimal infection control.

It is understandable these processes may be distressing to witness for families and for this reason, can be completed in the Body Hold area prior to placement into one of the fridges. 
The RCH Body Hold which is labelled 'Laboratory Services' can be found on Lower Ground Floor near the Silver Lifts. 

Place  2x ID bands on right wrist and right leg (left wrist/leg or under a tegaderm on the abdomen if previous options are unavailable). If not completed prior, once in body hold, as best as possible, the child should be laid flat, with arms by their side, legs straight, and if required a soft towel under their chin to help close the mouth. This will ensure the optimal position for future care by funeral directors. The child is then wrapped in a clean white hospital sheet, including the covering of their face, placed in an appropriate sized body bag, and hospital identification adhesive label placed on the outside of the bag prior to being placed into one of the available fridges. The weight limitation is 250kg and therefore should not be a concern. 

There are three sizes of bags available: small (preterm - 1 year old), midsize (2 year old to 12 years approximately) and adult ( 12 years and older). These are available in the memory trollies and extra stock in Body Hold.

Complete the Body Hold entry book and leave all relevant paperwork next to the registery book:

• In a non-coronial case:  copy of Death certificate
• In coronial case: copy of Statement of Identification, CD of all inpatient notes. In Coronial cases the body should not be left unattended until coronial office collect body unless approved by the Coronial Office. Please check with your Medical Officer and Nursing Unit Manager for clarification.

In the circumstances where a child is being collected from the ward, the correct identifications, documentation and wrapping and placement in body bag should still be respectfully completed prior to collection. 

Access for collection by funeral directors of a child from Body Hold is only available during business hours unless required for exceptional circumstances such as coroners or for religious reasons. The After Hours Nursing Bed Manager must be notified on extension 54000 if after hours collection is required.

Further information on the policy within Body Hold can be found here (RCH>Policy>Bereavement - Use of Specialist Bereavement Facilities).

Funeral directors

The family will need to choose a funeral director, as Australian law requires that a child be buried or cremated. If a family plans to make their own arrangements they will need to seek advice as the law requires them to fulfil certain obligations prior to cremation or burial. There are regulations governing where and how a child is buried or cremated. A RCH printable fact sheet on this can be found here (RCH>Kids Health Info>Fact sheets>Taking your child home - time together after death). Alternatively, you can encourage the family to contact the Australian Funeral Directors Association (afda.org.au) on 9859 9966 in Melbourne. For interstate body transfers, please discuss with the Nursing Hospital Manager and relevant Social Worker. There is a helpful RCH printable resources on Funeral preparation (RCH>Kids Health Info>Fact sheets>Always in your Heart - Planning your Childs Funeral) for families.

Some funding for funerals (RCH>Policy>Funeral Assistance Fund - RCH Foundation) is available for families experiencing financial difficulties. If you are unfamiliar with the process of assessing a family's financial state, please discuss with the social work team. This funding should not be mentioned to families prior to an assessment being completed.

Caring for yourself

Can I make contact with the family?

Under the Social Media policy, it is unacceptable to make long-term contact via email or social media. There is evidence to show the profound positive impact a letter/card can make on a family’s bereavement. However this should be discussed with your manager in the circumstance that a family have requested privacy. 

Can I go to the patient’s funeral?

You should never feel pressured or obligated to attend a funeral. If the family have shared funeral details and you do wish to go, you are going to their funeral as a representative of RCH. Please always discuss with your manager as there may be multiple team members wishing to attend. Please see RCH Death and Procedure Policy for further clarification here.

What do I do if a family attempts to make contact with me?

Be honest with the family and thank them for thinking of you. Under the Social Media policy, it is unacceptable to make long-term contact via email or social media due to professional boundaries.

Where can I get support for myself?

Caring for a child and their family is complex and emotionally charged. It is important to ensure you also care for yourself. This can be done through speaking with your manager or a colleague that you trust, talking with Pastoral Care team or through the RCH Employee Assistance Program (EAP).

Other special considerations

Organ/tissue donation

For some families, generously gifting their child’s organs provides an opportunity for finding meaning amidst very tragic circumstances. However, the consideration of organ and tissue donation should never impact with the overall care you provide the child and their family.  Furthermore, never assume that a child would not be eligible, or a family would not be interested without contacting the RCH Nurse Donation Specialist.

In business hours the RCH Nurse Donation Specialist can be contacted internally on 51598 or if you are outside the hospital can be contacted on 9345 5223. If out-of-hours, the weekend or no response from the RCH donation specialists within 15 minutes please contact the DonateLife Victoria 24-hour service on 1300 358 842. A donation specialist will return your call and will request information including patient demographics, presentation summary, past medical history, current supports and blood results. 

The types of tissues and organs that can be considered for donation will depend of the child’s age, size and clinical circumstances. Only people who die ventilated in critical care can be considered for solid organ donation. 

Donation of tissues such as eyes, heart valves, skin, bone and tendons can be considered if a patient dies outside of critical care and can be retrieved within 24 hours after death is declared. For further information please contact the RCH Nurse donation specialist as above, the Donor Tissue Bank of Victoria (DTBV) on 03 9684 4444 (www.dtbv.org.au) or the Lions Eye Donation Service (LEDS) on 0408 370 148, for further information regarding tissue only donation, please see guideline here.

Post-mortem examination/autopsy

Families may benefit from the opportunity to fully understand the reasons for their child’s death by allowing an investigation of their child’s body after death. A senior medical officer who has been closely involved in the child’s medical care is the most appropriate person to broach this subject with the family. If possible, this discussion should be commenced prior to the child’s death, to allow the family to process the discussion, ask questions and make an informed decision. Further information of Autopsy Consent can be found here.

Post-mortem and the child with suspected metabolic condition

The families of children who die with a suspected metabolic condition may be offered urgent post-mortem investigation of the child, comprising biopsies of skin, liver and muscle and a blood/urine/CSF specimens, to facilitate diagnosis and inform future family planning. 

The initial post-mortem examination in this case should ideally be within 2 hours of death to gain appropriate tissue specimens. Some families prefer for post-mortem to not be undertaken; this preference should be respected.

There are a number of teams that are commonly involved with this screening process. The treating team in consultation with the Metabolic team should discuss and coordinate these procedures, ideally beginning prior to the child’s death, to ensure accurate and adequate tissue for diagnosis. 

Despite a death, consideration for the referral to the Rapid-Whole Exome Sequence project should still be made if the child meets the criteria: Neuromuscular diseases, syndromic cardiovascular malformations, hypertrophic cardiomyopathy, skeletal malformations and/or dysplasia, neonatal cholestatsis and liver failure, cystic renal disease, metabolic disorders with lactic acidosis, immunodeficiency or bone marrow failure. 

Although consent is sought by the treating team, the biopsies are most commonly taken by the Surgical Registrar or by Anatomical Pathology Registrar (contactable via switchboard) and appreciate being contacted early to discuss the feasibility and process involved. A ‘Metabolic Autopsy Kit’ is kept in Core Lab on Level 2 which has the protocols requried for sampling. Further information can be found here. 

Post-mortem tumour donation

The families of some children with rare brain tumours may elect to have the child’s tumour donated for research purposes after the child has died. This extremely generous donation allows vital information to be gathered about these rare tumours, enabling the development of treatment options for future children with these diagnoses.

1.     The child’s treating oncologist should initiate discussions if appropriate and complete consents with the family, ideally prior to the child’s death. Consent forms can be found in the Children’s Cancer Centre in the Level 2 offices. Three copies of consents should be made, with one copy to reside with the family, one with the treating oncologist, and one distributed to the appropriate pathology service as follows:

          a.    RCH tissue bank consent (sent to tissue bank)

          b.    Molecular characterisation of rare tumours consent (sent to neuro-oncology CRN)

          c.    Consent for limited post-mortem (brain/brainstem/cerebellum only) (sent to anatomical pathology)

          d.  Parents need to be given a Postmortem Family Information Booklet, available through the Reproductive Loss Services Coordinator at RWH or from the CCC neuro-oncology CNC

For children who die in hospital, anatomical pathology should be notified as soon as possible in order to facilitate tumour donation in-hours on the next working day.

For children who die out of hospital, the Victorian Paediatric Palliative Care Program (VPPCP) will commonly be involved with the family, and the following procedure applies:

1.     Family should have two hospital identification bracelets placed in the home

2.     When the child’s death is thought to be imminent, VPPCP should alert anatomical pathology team and after hours nursing coordinators (Nurse.HospitalManagers@rch.org.au) to ensure the funeral director will have mortuary access after hours if needed

3.     When child dies, parents should alert their Community Palliative Care (CPC) service or VPPCP, and the funeral director of their choice

4.      CPC service or VPPCP should liaise with the funeral director:

          a.       Funeral director or CPC should put the ID bracelets on the child prior to transporting them to RCH (parents may do this if they wish)

          b.      After hours, funeral director can contact the After Hours Nursing Coordinator through switch (9345 5522) to arrange mortuary transfer

          c.       If there are any AH problems, the Pathologist on call can be contacted through switch to facilitate the mortuary transfer

5.     The post-mortem donation will occur in-hours on the next business day; anatomical pathology will then liaise with the funeral director to discharge the child to their care.

Suppression of lactation

RCH does not support the prescription of Cabergoline as the primary means of lactation suppression, as it requires assessment and review to ensure the wellbeing of the mother. Medication is best considered and commenced in consultation with the mother’s own GP. Further information can be found here.

Family presence during active resuscitation

The consideration of a family’s presence during cessation of active resuscitation is important and should be offered. Some families will want to be present and others will decline. If families are present, they must have a dedicated staff member there to support them, such as social work or a senior member of staff, who will not need to leave abruptly. For further information please see here (RCH>Trauma service>manual>Trauma team roles and responsibilities).

ECLS and VAD Withdrawal

Specfic information on ECLS and VAD withdrawal considerations are being developed. They will soon be available via the PICU Intranet. 

RCH Additional Links

• RCH Death and Bereavement Policy and Procedure: https://www.rch.org.au/policy/policies/Death_and_Bereavement/
• Queensland Health’s Cultural Profiles Document: https://www.health.qld.gov.au/__data/assets/pdf_file/0033/158775/profiles-complete.pdf

References

• Brodribb, W. (2020). Lactation Suppression After Infant Death, https://www.breastfeeding.asn.au/bfinfo/lactation-after-infant-death
• Butler, A.E, Hall, H., Willetts, G., Copnell, B. (2015). Family Experience and PICU Death: A Meta-Synthesis, Pediatrics, 136, 961-973.
• Carlso, R. (2012). Helping families create keepsakes when a baby dies, International Journal of Childbirth Education, vol. 27, no.2, pp86-91.
• Coroners Court of Victoria (2009), Coroners Information for Health Professionals, https://www.rch.org.au/uploadedFiles/Main/Content/clinicalguide/Coroner_Information_for_Health_Professionals.pdf
• Mullen, J., Reynolds, M., Larson, J. (2015). Caring for pediatric patients’ families at the child’s end of life, Critical Care Nurse, vol. 35, no. 6, pp.46-56.
• Department of Health. (2013). Requirements for the facilities and operation of mortuaries, National Pathology Accreditation Advisory Committee https://www1.health.gov.au/internet/main/publishing.nsf/Content/9E16A59073C155C4CA257BF0001B080B/$File/V0.29%20Mortuaries.pdf
• O’Malley, P., Barata, I., Snow, S. (2014). Death of a child in an Emergency Department, American Academy of Pediatrics, vol. 134, no. 1, pp313-330.
• Royal Children’s Hospital. (2017). Number of deaths and location from 1 July 2015 – 30 June 2017 of RCH Patients, RCH Data Collection.
• Wender, E. (2012). Supporting the family after the death of a child, , Pediatrics, vol. 130, no.6, pp1164-1169.
• Youngblood, A.,  Zinkan, J., Tofil, N., White, M. (2012). Multidisciplinary simulation in pediatric critical care: the death of a child, Critical Care Nurse, vol. 32, no. 3, pp55-61.

Please remember to read the disclaimer.

The development of this nursing guideline was coordinated by Molly Williams, Consultant, Palliative Care, Melissa Heywood, CNC, Palliative Care,  and Jess Rowe, RN, ED, and approved by the Nursing Clinical Effectiveness Committee. First published May 2020.