The term palliative care is used to describe the specialised care and support that is provided to someone who has a terminal (life-limiting) illness. It also involves the support given to the person’s family and caregivers.
Palliative care aims to help people live as well as possible by reducing the amount of unwanted symptoms they feel (e.g. pain, nausea). The goal is to improve the quality of life. Palliative care for children involves:
- ensuring your child is comfortable and in the best possible condition so that they can do things that are important and fun (e.g. going to school or kindergarten)
- supporting and helping you and your family with difficult decisions
- helping you to support your child with any worries or questions they might have
- helping you support siblings of the sick child
- providing practical help with equipment, medications and respite care
- ensuring families can access support at the time of their bereavement.
Deciding to begin palliative care
Sometimes it is difficult to know what the outcome of a serious illness might be. You may find yourself in the difficult position of having to decide whether or not to pursue treatments that offer a small chance of a cure. It is possible to go ahead with such treatments and still receive
elements of palliative care. In this way, families can hope for the best but prepare for the worst.
For some families, the decision is made to stop treatments that cause distress and discomfort to the child yet are not expected to have a positive outcome on the child’s condition. The focus of treatment then becomes improving the child’s quality of life.
When the question of palliative care is raised, you may feel confused, overwhelmed and frightened. You may experience many reactions such as shock, numbness, sadness, fear, anger, helplessness and other intense feelings. It is important to know that these feelings are understandable at such a
difficult time.
Palliative care options
Care at home
Many families wish to care for their children at home, because the child feels secure in their home environment and families are better able to control the daily routines. It also increases the opportunity for extended family and friends of the child to help with their care.
You may find the support of a palliative care service helpful when caring for your child at home. In Victoria, palliative care providers offer a range of services including nursing, counselling and bereavement support. Some services offer complementary therapies such as music
therapy and massage.
Care in hospital
While most symptoms can be readily controlled at home, some children may need admission to hospital from time to time, and some families may feel unable to care for their child at home for various reasons.
Hospital staff try, wherever possible, to care for children in a private room and provide a comfortable environment for the family. In hospital, you and your child will have access to the support of many members of the hospital's healthcare team, including doctors, nurses, social workers and
chaplains.
Care in a hospice
Palliative care can also be provided in a hospice, which is a healthcare facility especially for terminally ill patients.
Very Special Kids Hospice in Melbourne is purpose-built for children. The emphasis is on creating a home-like environment where family and friends are encouraged to be involved. Very Special Kids Hospice keeps a bed available for admission at short notice. Accommodation is also available for
parents.
Changing the place of care
Many children and their families will move between these different places of care. It is important to understand that you can change your mind during the course of your child's illness. This is particularly important for those who choose home care. There will always be a bed available
in the hospital ward if, at any time, you feel hospital care is more appropriate. Hospital staff are also available to provide guidance and advice regarding the care of children at home and in the hospice.
Helpful hints for parents
- Do what is right and comfortable for you, your child and your family, not what you think might be expected of you.
- Continue to ask questions to help you understand all the things you want to and need to know. No question is too small or too silly to be asked.
- It is OK for you to want to know everything all at once, or only some things at a time.
- Let your child's treating healthcare team know when you are ready to talk about your child's illness progression, symptoms, timing of death and other related issues.
- Seek a second opinion if you want to.
- Look after yourself; build some 'me time' into the daily routine.
- As a family, try to openly discuss how you are going to manage the many changes that are ahead.
- Share your feelings, thoughts, fears, concerns, hopes and expectations with a trusted person.
- If you find it hard to talk about things, consider keeping a diary of your thoughts and feelings.
- Create memories of your child. This can be achieved through special times together, photos or videos.
- Share the care and trust others to help.
Accessing and accepting support
We all need the help and support of other people at some time in our lives – you will be able to help someone else at another time. Now it is your turn to have support.
Family and friends
Many people feel the greatest help they receive is the care and support given to them by their family and friends. One of the best things you can do at this difficult time will be to accept the help and support offered by the people closest to you. Try not to shut them out. They will
want to support you in any way they can, but they may not know what to say or do.
It may be helpful to be very honest and let them know that sometimes you may not want to talk with or see them, but there might be some very practical ways in which they can help (e.g. preparing meals or collecting other children from school).
You may wish to allocate a support person from outside the immediate family the role of coordinating offers of help from well-wishers.
Your GP or paediatrician
Your GP or local paediatrician will form an important part of the team caring for your child. They will be able to visit you at home to provide medical support.
The hospital treating team
The healthcare professionals who may be involved in your child's care include doctors, nurses, social workers, occupational therapists and physiotherapists, education officers and chaplains. One member of the healthcare team will take on the role of
coordinator. You may request a coordinator if this has not already happened.
Some families find it helpful to keep a note of all the people involved and their contact numbers, as well as questions they may wish to ask. Family meetings with key staff can also be organised. These meetings can help ensure everyone is clear about the plans for your child's
care and can also provide an opportunity for you to ask questions.
Resources and contacts
The following resources and support services are available in Victoria. For other locations, contact your treating hospital for support services or see
Quality of Care Collaborative Australia.
The Victorian Paediatric Palliative Care Program (VPPCP)
The
VPPCP is a statewide program providing support to any family of a child or young person with a life-limiting illness who is treated in Victoria. The program liaises with your child's treating team to enhance the care available to you and your child. Anyone can refer to the VPPCP for information or support,
including families.
Ph. (03) 9345 5374
Very Special Kids
Very Special Kids
is a Victorian organisation offering an extensive range of free support to families of children with a life-threatening illness. The organisation also provides respite and palliative care at Very Special Kids' House in Malvern.
Ph. (03) 9804 6222
Palliative Care Victoria
Palliative Care Victoria develops and provides information to help people living with life-threatening illnesses and their families. It also provides information on palliative care services in your local community.
Ph. (03) 9662 9644
SIDS and Kids Victoria
SIDS and Kids Victoria offers bereavement support services to the families of children six years and younger who have died suddenly. Regional programs in some parts of Victoria are provided to families who have experienced the death of a child aged 18 years and younger, regardless of the cause. A crisis help line is
available 24 hours a day, seven days a week.
Ph: (03) 9822 9611 or 1300 308 307
The Compassionate Friends Victoria Inc
The Compassionate Friends Victoria Inc is a statewide self-help service that offers support to bereaved parents, information, a 24-hour phone support hotline, grief support groups (including a sibling group) and newsletters.
Ph: (03) 9888 4944 or 1300 064 068
Key points to remember
- The aim of palliative care for children is to ensure the child is comfortable and improve their quality of life.
- It is normal to feel confused, overwhelmed and frightened when deciding to begin palliative care.
- Palliative care for your child can take place at home, in hospital, in a hospice or all three.
- Most people feel the greatest help they receive is the care and support given to them by their family and friends. Medical support is also available.
- There are several organisations that offer support programs for families undergoing palliative care.
For more information
Common questions our doctors are asked
Does palliative care mean giving up?
While deciding to begin palliative care can be an overwhelming and traumatising decision, try not to think of it as giving up. It can be helpful to focus instead on the idea that you are ensuring your child is as comfortable as possible, and in the best possible condition to spend time
doing things that they like. It is also possible to begin palliative care while continuing other treatments.
Is palliative care only for cancer patients?
No – palliative care is available for children facing any life-limiting illnesses. The focus is on relieving your child’s unwanted symptoms, no matter the cause or illness.
How much does palliative care cost?
Many services relating to palliative care are government funded and are free of charge. There may be some costs associated with medicines or medical equipment. You can also access private palliative care services – ask about costs when you contact them.
Developed by The Royal Children's Hospital Palliative Care department. We acknowledge the input of RCH consumers and carers.
Reviewed October 2018.
This information is awaiting routine review. Please always seek the most recent advice from a registered and practising clinician.
Kids Health Info is supported by The Royal Children’s Hospital Foundation. To donate, visit
www.rchfoundation.org.au.