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
- 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
- Preparing families for dying process
At the time of death
- 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
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).
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.
with the Child and their Family
care of a child at end-of-life involves many potentially difficult
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.
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.
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
Talking with a child about their illness
the Advance Care Planning resources, there is helpful information on how to
talk with their child about their illness. This can be
(RCH>Advanced Care Planning>Discussion Guide>Including the child).
often express concerns about how to talk to siblings. There are a number of
resources that you can share with parents.
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)
Care Australia have printable fact sheets available in several languages; Fact Sheet – Sibling Support
to consider include;
– provide a comprehensive Sibling Support Program for families in their
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
Life Therapy (CLT) – Provide
resources and support to families, especially siblings, about end of life.
Medical discussions prior to the child’s
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
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
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.
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.
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.
of Care options include:
RCH Bereavement Rooms
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
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.
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
details can be found here: Bereavement Facilities
Policy and Procedure Guideline (RCH>Policy>Bereavement).
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.
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.
- 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
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
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.
considerations for PIPER transfer for withdrawal of life-sustaining therapies
- PIPER are not able to provide
medical staff for transfers. This need to be provided by the referring
- 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.
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).
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
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
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 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.
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
- 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
culturally sensitive service available for Aboriginal and Torres Strait
Islander children and their families.
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
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.
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 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: email@example.com
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
(RCH>Operations>Clinical Support Services>Booking an interpreter), and
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
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
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
- 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.
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.
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
BD Saf-T-Intima –SC device
utilised at end of life. (please see SC Clinical Practice
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).
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
- 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)
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)
decreasing, peripherally and then centrally
(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).
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.
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
Coming soon. CPG page to be updated.
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.
- Ensure relevant support
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
- There are specific expectations
for stabilising a patient after Brain Death (See page 98 – PICU Guidelines
‘Death - Organ Donation’), or, Organ Donation After Circulatory
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
After the death
Death of a Child checklist
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
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
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
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.
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).
parents have a contact number – for any questions
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
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
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.
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
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
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.
the Body Hold entry book and leave all relevant paperwork next to the registery
- 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.
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.
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.
information on the policy within Body Hold can be found here (RCH>Policy>Bereavement - Use of
Specialist Bereavement Facilities).
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?
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
Can I go to the patient’s funeral?
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?
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.
can I get support for myself?
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
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.
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
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
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.
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.
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)
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:
Family should have two hospital identification
bracelets placed in the home
When the child’s death is thought to be imminent,
VPPCP should alert anatomical pathology team and after hours nursing
to ensure the funeral director will have mortuary access after hours if needed
When child dies, parents should alert their
Community Palliative Care (CPC) service or VPPCP, and the funeral director of
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
c. If there are any AH
problems, the Pathologist on call can be contacted through switch to facilitate
the mortuary transfer
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.
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
information on ECLS and VAD withdrawal considerations are being developed. They
will soon be available via the PICU Intranet.
RCH Additional Links
- 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,
- 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
- 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.