Starship Foundation

Conditions, tests & treatments A-Z
Keeping your child well
Parent support
Abuse
Disabilities or chronic conditions
Early intervention
Emergencies -dialling 111
Financial help (raising a family)
Financial help (for disability)
Grief, loss, change
Health system
Helping your child manage treatment
How can I tell if my child is sick?
Needs assessment
Pain
Palliative care for children
Receiving a diagnosis
Rights
Special education
What health and disability services s...
Support groups A-Z

Palliative care for children


Disclaimer: This fact sheet is for educational use only. Please consult your doctor or other health professional to make sure this information is right for your child.

Introduction

You are probably reading this because a precious child that you love has been diagnosed with a life-threatening or life-limiting illness.
 
When the question of palliative care is raised, you as a parent may feel confused, overwhelmed and frightened. You may experience many reactions, such as shock, disbelief, a sense of unreality, numbness, sadness, fear, anxiety, anger, guilt, emptiness, hopelessness, helplessness, and other intense feelings. It is important to know that these feelings and thoughts are all experienced by many other families / whanau and are not unexpected at such a difficult time. See How will I cope? below.
 
The following is some information you may find helpful – you may want to print it out and refer back to particular sections as you're ready.
 

 Back to Top

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-limiting or life-threatening illness.
  • life-limiting conditions are those for which there is no reasonable hope of cure and from which children or young people will die. Some of these conditions can cause children to deteriorate over time, making them increasingly dependent on their parents and carers
  • life-threatening conditions are those for which curative treatment may be possible but may fail, such as children with cancer. This does not include children who have had successful curative treatment or who are in long-term remission
In the case of children, palliative care involves:
  • ensuring your child is comfortable and in the best possible condition so that they can go about doing things that are important and fun (such as going to school or kindergarten)
  • helping your family / whanau with difficult decisions
  • supporting you as the parents or caregivers
  • helping you to support your child around any worries or questions they might have
  • helping you to support the brothers and sisters of your sick child
  • providing practical help with equipment, medications and respite care
  • ensuring your family / whanau are able to access support in bereavement
“Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the whole family and includes the management of distressing symptoms, provision of respite and care from diagnosis through death and bereavement”. The Association for Children's Palliative Care (ACT), UK and the Royal College of Paediatrics and Child Health (RCPCH), UK. 1993.
 
The aim of palliative care is to achieve quality of life for your child until they die, whenever that may be, preferably in a place of your child's and family's / whanau's choosing.
 

 Back to Top

Does having palliative care mean giving up?

No. Sometimes it is difficult to know what the outcome of a serious illness might be. Children and parents may find themselves 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 / whanau can "hope for the best but prepare for the worst".
 

 Back to Top

How will I cope?

The following are some helpful hints:
  • do what is right and / or comfortable for you, your child and your family / whanau - 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 to 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
  • do call on the supports available to help you. See Where to go for more information and support below, which lists organisations that you may wish to access for information, advocacy, emotional and practical support, and bereavement care (see the section on bereavement care below)

 Back to Top

What are the choices available for families / whanau?

Home
Many families / whanau wish to take care of their children at home because they feel secure there and are better able to control their daily routine. It also increases the opportunity for parents, siblings, friends and family of the child to help with their care. Families may find the support of a homecare team for children - alone or in combination with 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 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. Children and families have access to the support of all members of the hospital's health care team including doctors, nurses, social workers, chaplains and others.

Hospice
Palliative care can also be provided in a hospice and some children and families may choose to use their local adult hospice. There is currently no hospice for children in New Zealand but a two-bedded facility in Hamilton is in the process of being built.
 
Many families will move between these 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. Staff at the hospital are also available to provide guidance and advice regarding the care of children at home and in the hospice.
 

 Back to Top

Respite care and carer support

You may be eligible to have some relief care for a number of days each year. Usually this is money paid to an informal carer that you choose. This is called carer support.
 
In some situations, your child may be eligible for in-home and / or out-of-home respite care. This may require a NASC (Needs Assessment and Service Co-ordination) assessment. See the needs assessment fact sheet on this website. Ask your social worker for assistance or call HealthPAC, the Ministry of Health's help line on 0800 281 222 (press 2).
 
If you are able to receive respite care and carer support, they can be important for you and your other children. They can give everyone a break, including your child with palliative needs.
 

 Back to Top

An individual package of care

All children with palliative care needs require an individual package of care.
 
There are different aspects to palliative care:

 Back to Top

Symptom management

Symptom management is the control of both physical and psychological effects of your child's illness. Management of symptoms often needs to be combined with attention to the psychosocial and spiritual aspects of care.
 

 Back to Top

Advanced care planning

Advanced care planning invloves the making and planning of decisions required for your child as they advance through their illness and can be required for months or years before the end of their life. Advanced decisions are often reached over time and are helped by a trusting relationship with your child's health care team and shared decision making.
 
These discussions are necessary but may be difficult for everyone involved. It may help to look at this planning from the viewpoint of your child's and your wishes at four possible stages:
  • wishes during your child's life 
  • plans for when your child becomes more unwell
  • plans for care during an acute life-threatening event
  • wishes for after your child's death

It's important to remember that:

  • you don't need to complete a plan for all stages at one time
  • you can review and change an individual plan at any time
The following is an example of some of the things you may have thought about and wish to discuss:
 
Advanced care planning: Examples ofsome of the things you may have thought about and wish to discuss
 
 
 
 
 
 
 
 
 
 
 
 
Reproduced from Child and Family Wishes Document. See Acknowledgements. 
 

 Back to Top

End of life care

The end of life phase of your child's illness may well not have a clear cut beginning but ends when your child dies. In some cases the beginning may be recognised by you and your child. In other cases it may be your child's health care team that recognises the start of this phase.
 
Care at this time focuses on preparing for the end stage of your child's illness, anticipated death and immediately afterwards. This includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.
 

 Back to Top

Bereavement care

You may find the following fact sheets on this website helpful:

 Back to Top

Your health care team

The community team
Many families will want to spend as much time as possible at home. General practitioners, local paediatricians and paediatric homecare / community workers form an important part of the team caring for your child and are able to provide support in the community.
 
The hospital team
The health care professionals who may be involved in your child's care include doctors, nurses, social workers, occupational therapists, physiotherapists, educational officers and chaplains.  Family meetings with key staff can be organised and can help ensure everyone is clear about the plans for your child's care. These meetings can also provide an opportunity for you to ask questions.
 

 Back to Top

Who can offer support?

Make sure you use the supports and resources that are available to help you. Some are listed in Where to go for more information and support below.
 
Most parents feel that 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 those closest to you. Try not to shut them out. They will want to support you in any way they can but 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 very practical ways in which they can help such as preparing meals or collecting the other children from school.
 

 Back to Top

Where to go for more information and support

ACT - The Association for Children's Palliative Care (UK)
ACT is a UK organisation working to achieve a better quality of life and care for every life-limited or life-threatened child or young person and their family.
Website: http://www.act.org.uk/
 
Your health care team may discuss this guidance document with you. It has been developed by members of the Service Improvement Network Project (Avon, UK) to support, and promote, end of life planning for children with life-limiting conditions.
 
The document has been written for health professionals and provides:Child and family wishes document
  • guidance for discussions on child and family wishes when a child's life is limited
  • a general information sheet
  • wishes during life
  • plans for when a child becomes more unwell
  • plans for care during an acute life-threatening event
  • wishes for after death
Starship Children's Hospital (NZ)
The Starship website provides information about the specialist palliative care team who are available to provide advice. 
 
One of the following organisations / support groups may be helpful to you depending on your child's illness:
 
Canteen
CanTeen is the New Zealand organisation supporting young people living with cancer. CanTeen was established to ensure that no young person in New Zealand living with cancer should ever have to feel alone. CanTeen is for anyone between the ages of 13 and 24 who is living with cancer. The organisation aims to provide a relaxed, friendly and fun environment where young people can share their thoughts and feelings with other young people whose lives have been affected by cancer.
 
Carers NZ
Carers NZ provides information, advocacy and support for New Zealand's family, whanau and aiga carers. 
 
Child Cancer Foundation
The Child Cancer Foundation provides ongoing practical, emotional and financial assistance to children, and their families, whose lives have been changed forever by cancer.
 
Cystic Fibrosis New Zealand
The Cystic Fibrosis Association is an incorporated society providing membership for regional groups, businesses and individuals who wish to work together in support of people with cystic fibrosis and their families. There are branches in most regions to provide local support.
 
IDFNZ (Immune Deficiencies Foundation of New Zealand) and Kids Foundation
IDFNZ is a non-profit organisation dedicated to supporting children, teenagers and adults with diagnosed Primary Immune Deficiency (PID) disorders. A member of the International Patient Organisation for Primary Immune Deficiencies (IPOPI), its focus is on educating the public and health professionals about PID, lobbying, and ongoing medical and scientific research.
 
The Kids Foundation is the welfare arm of IDFNZ and is responsible for caring for suspected or diagnosed PID children, teenagers and their families, as well as bone marrow transplant (BMT) and liver transplant children. The Foundation offers members practical, emotional, medical and social support.
 
 
Heart Kids
Heart Children New Zealand provides care and support to heart kids and their families.
 
Kidney Kids
Kidney Kids is a group of New Zealand parents and children, who are dealing with kidney issues, and who get together to share problems, solutions and good times.
 
Leukaemia and Blood Foundation
The Foundation's programmes include patient support; some financial assistance (each case is assessed on an individual basis); educational materials; advocacy and education and support programmes:
 
LDNZ (Lysosomal Diseases New Zealand)
LDNZ is a support group for families affected by lysosomal storage diseases.
 
Muscular Dystrophy Association of New Zealand
The Muscular Dystrophy Association has a national office and four branches which provide a range of free services to people affected by 40 or more neuromuscular conditions.
 
NZORD (New Zealand Organisation for Rare Disorders)
NZORD provides New Zealand's central starting point for information about rare diseases.
 
Parent to Parent
Through a network of regional groups and trained volunteer Support Parents, Parent to Parent provides information and emotional support to families who have a child with a disability, special need or health impairment. There are more than 3600 different conditions covered by the service, ranging from the very common through to the most rare condition. By contacting Parent to Parent, families can access written information relating to their child's condition, and also receive emotional support through talking with a trained volunteer Support Parent who knows and understands from personal experience the challenges, frustrations and special joy that comes from parenting a child with special needs.
 

 Back to Top

Acknowledgements

ACT - The Association for Children's Palliative Care. UK.
 
Service Improvement Network Project. UK. 2008. Child and Family Wishes Document. 
 
Royal Children's Hospital logoThe Royal Children’s Hospital (Melbourne) Kids Health Info for Parents.

 Back to Top
Links   (these are the web addresses for the numbered links in the text above)


Back to Top

Your notes

Print this page

Endorsement

This fact sheet was endorsed by PSNZ - 14/05/2009

Copyright

Fact sheets are subject to copyright. In the interests of information sharing they may be copied but acknowledgement must be given to PSNZ and Starship Foundation.
© The Paediatric Society of New Zealand and Starship Foundation 2005 - 2010


The Paediatric Society of New Zealand
http://www.paediatrics.org.nz 		Starship Foundation
http://www.starship.org.nz