A Referral to Palliative Care: frequently asked questions by parents and carers

Does palliative care mean my child will stop having treatment?

When a paediatric palliative care team becomes involved in caring for a patient it does not mean that treatment automatically stops. Treatment and therapies can continue but goals may change. In some cases the goal or focus of treatment may shift from cure to effective symptom management.

I do not want my child to be nursed in hospital and we want to stay home as a family. Can you support us there?

There are many ways we can support a family to care for a child in their location of choice. This may include hospital, home or Bear Cottage. Every family has unique needs and goals of care for where they would like their child to be cared for. The palliative care service can provide home visits wherever possible, or may additionally be able to video conference and provide telephone support to a family in their home when needed. We are able to work with your local community service to ensure you have additional support to care for your child at home.

Does this referral to palliative care mean that everyone has ‘given up’ on my child?

A referral to palliative care never means that everyone has ‘given up’ on your child. A referral to palliative care means that your child has an illness where the outcome may be unknown and during that time palliative care aims to help your child live in the best way possible. If your child is having treatment with the hope of cure, this will continue. Palliative care will not take over care of your child, but will work with the teams you already know and trust to provide the best possible care.

Why are these (new and different) drugs being given to my child and what will these medications do?

One of the most common reasons children are referred to palliative care is for the expertise we have in managing difficult symptoms. This often means we need to add strong medications that your child may or may not have had before. The reasons for giving the drugs are to manage the symptoms for example if the child has pain we will give strong medications. These drugs do not cause any harm to your child and are used safely with many children. Often children are a lot more active and happy, and enjoying life because their pain or other symptoms are better controlled.

Some thoughts shared by our families

• “It’s a BIG, big psychological help to know palliative care is always there. It’s just a matter of a phone call and they will do anything to help along the way.”

   

• “Palliative care has supported our son and family since 1999. It has been a long journey. The team have been a big support and helped us to advocate for our son’s needs with other medical teams.”

   

• “At a time when we thought our world was falling apart, we were introduced to the Paediatric Palliative Care Team who has been a true blessing ensuring the best care and quality of life for our child.”

   

• “When you are emotionally and physically exhausted, the palliative care team are absolutely amazing. There are times in the journey we’ve really needed them to go in and bat hard for our family. Other times they walk quietly but strongly supportive by our side.”

   

• “Initially I had a fear of the doctors “giving up “on my son, but the palliative care team have been very supportive, always offering a helping hand. They liaise with other health professionals so that my son can receive the best care and management.”

   

• “One of the biggest aspects for us is the social isolation and lack of understanding from those around you…. the palliative care team fill in those huge gaps by being there and just seem to know what you are going through.”