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Paediatric Palliative Care

Nurture Information Hub

Evidence  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687538/ 

Franca Benini, Marco Spizzichino, Manuela Trapanotto, and Anna Ferrante 

Children with life-limiting and life-threatening illnesses that lead to death, or a life of severe disability deserve a profound cultural and organizational reappraisal of how we care for them when the aim of care is not to make them recover, but to offer the best possible "health" and "quality of life", despite their disease. 

Infants with life-limiting and life-threatening illnesses need support and long-term care in a palliative setting. 

The World Health Organization defines palliative care for children as "the active total care of the child's body, mind and spirit... also involves giving support to the family”. 

Education  

Paediatric palliative care is the care for babies and their families when the baby is recognised as having a life-threatening or life-limiting condition. It does not necessarily mean that your baby won’t survive. 

Palliative care focuses on improving quality of life, reducing pain (and other symptoms), and supporting you and your family, helping with practical and emotional supports, and in your decision making 
 
If you're in an area with a children's hospice, it can provide a more home-like environment compared to a hospital setting. These hospices offer round-the-clock holistic care for your child with access to health professionals on-site.

Children's hospices operate in purpose-built facilities, ensuring a child and family-friendly atmosphere. They offer a range of support services, including respite care, assistance during the transition from hospital to home, and end-of-life care. 

The staff at hospices are highly skilled in caring for children with life-limiting conditions and are equipped to provide significant support to you and your family, not only in the present but also in the future. 

Deciding to begin palliative care 

Facing a serious illness can be incredibly challenging, especially when deciding on treatments when the chance for cure is diminished. It's possible to pursue such treatments while still incorporating elements of palliative care. This approach allows families to hold “hope for the best” while preparing for other possible outcomes. 

In some cases, families decide to discontinue treatments and interventions that cause distress and discomfort to the child when positive outcomes are unlikely. Instead, the focus shifts to enhancing the child's quality of life, comfort and dignity. 

When palliative care is discussed, it's common to experience a range of emotions (e.g. feeling confused, overwhelmed, and/or frightened). Emotional reactions such as shock, numbness, sadness, fear, anger, and helplessness are entirely appropriate to experience during such difficult times. It's essential to recognize that these feelings are understandable, and seeking support during this challenging period is crucial. 

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 alternatively be given small bits of information as you go. 
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. 
A focus on getting through each day as you go can help, while at the same time tyring to keep an eye on the larger picture of what is happening

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  

During challenging times, many find that the most valuable support comes from family, friends and sometimes faith communities. Accepting the care and assistance offered by those closest to you can be one of the most helpful things you do. It's understandable that you might not know how to navigate this situation, and your loved ones may be unsure of what to say or do. 

Being honest about your needs can be beneficial. Let them know if there are times when you might need space, but also specify practical ways they can help, such as preparing meals or looking after other children. 

To streamline the support you receive, consider assigning a support person from outside the immediate family to coordinate offers of help from well-wishers. This way, you can focus on what matters most while ensuring that the support you receive is organized and meaningful. 

The hospital treating team 

The healthcare professionals who may be involved in your child's care include doctors, nurses, social workers, psychologists, occupational therapists, physiotherapists, pharmacists, other allied health professionals, and chaplains. It can be helpful for one member of the healthcare team to 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. 

Empowerment  

While deciding to begin palliative care can be an overwhelming and challenging 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.  You could consider it as an extra layer of care and support in addition to the care and support you are already receiving.

Educating yourself about your child’s illness is an important part of managing their care. There may be a large amount of information available about your child’s illness however it is important to try and ensure that it is reliable and relevant to your situation. The best source of health information is your child’s care team. Speak to your child’s care team, don’t be afraid to ask for more information.  

Useful Links 

The European Foundation for the Care of Newborn Infants (EFCNI) 

https://www.efcni.org/news/compassionate-care-for-sick-or-preterm-newborns-at-the-end-of-life/ 

Paediatric Palliative Care 

https://paediatricpalliativecare.org.au//wp-content/uploads/dlm_uploads/2018/10/A-Family-Companion.pdf 

Miracle Babies Foundation 

https://www.miraclebabies.org.au/content/bereavement/gjspjs 

Paediatric Palliative Care Services in Australia by State

https://www.quocca.com.au/Palliative-Care-Services

National Service Directory (palliativecare.org.au)

Hospice Palliative Care in Australia by State: 

Hannah’s House – WA  