What is Palliative Care?
The term Palliative Care is used to describe the care and support that is provided to people who have a life threatening illness. The World Health Organisation states;
“Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and families”.
Palliative care does not mean withdrawing all treatment. Indeed, very active interventions such as chemotherapy and radiotherapy may be helpful in alleviating symptoms and improving a child’s quality of life. Where cure is unlikely or impossible, the goals of care change to focus on enhancing quality of life. Palliative care means that your child’s comfort and dignity become the priority and adequate support is provided to them and others in the family. It has been said that palliative care is about “adding life to years, not years to life”.
Is palliative care only for children with cancer?
No. Palliative care is available for all children facing life-limiting illnesses.
What are the choices of care available to families?
Home – Many families wish to care for their children at home because they feel secure there and are better able to control their daily routine. It also increases the opportunity for the parents, siblings, friends and family of the child to assist with their care. Families may find the support of a palliative care service helpful when they are at home.
Hospital – While most symptoms can be readily controlled at home, some children may need admission to hospital from time to time. Some families may feel uncomfortable or unable to care for their child at home for various reasons. Children and families have access to the support of the paediatric palliative care team within the purpose build Nicholas trust rooms. The emphasis is on creating a home-like environment where family and friends are encouraged to be involved.
Many families will move between these places of care. 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. Staff at the hospital are also available to provide guidance and advice regarding the care of children at home and in the Nicholas trust rooms.
How do families cope?
When the question of palliative care is raised, you may feel confused, overwhelmed and frightened. You may experience many reactions – for example: shock, disbelief, a sense of unreality, numbness, sadness, fear, anxiety, anger, guilt, emptiness, hopelessness, helplessness, and other intense feelings. It is important for you to know that these feelings and thoughts are all experienced by many other families and are not unexpected at such a difficult time. They are natural expressions of the feelings parents experience when they cannot protect their child from a life-threatening illness.
Many families experience great turmoil as a result of what are major changes. Sometimes families find that their experience of the good days can be affected by the knowledge of their child’s illness. It can be hard to balance the needs of your child, other family members and yourself. Some parents find it helpful to live one day at a time, to maintain some routine, and to also be flexible when making plans.
Helpful Hints for Parents
Do what is right and/or comfortable for you, your child and your family ” not what is expected of you.
Continue to ask the questions that you need to for further understanding and clarification. Remember that no question is too small or too silly to be asked.
It is OK for you to want to know everything or only some things at a time.
Let your treating health care team know when you are ready to talk about your child’s illness progression, symptoms, timing of death, etc.
- Seek a second opinion if you want to.
Share the care and trust others to help.
Look after yourself; build in some of your ‘own time’ into the daily routine.
As a family, try and openly discuss how you are going to manage the many changes.
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, videos, etc.
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. It is your turn now to have support.
Meet our Paediatric Palliative Care Team
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You matter because you are you, and you matter to the last moment of your life.
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It is so often, through adversity, that we are challenged to make a difference. We could not save Nicholas, but we could ensure support for families who find themselves in a similar situation.