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Palliative care for childrenDisclaimer: 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. Key points to remember about palliative care
 Back to TopWhat is palliative care?Palliative care for children and young people with life-limiting conditions focuses on comfort and quality of life for the child and support for the whole family.
The term "palliative care" is used to describe the care and support that is provided to children in the following four groups: Children with life-threatening conditions ...
... for which curative treatment may be possible but may fail. Palliative care may be necessary during periods when prognosis is uncertain and when treatment fails. Children who have had successful curative treatment or who are in long-term remission are not included. Children with conditions ...
... where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal childhood activities but where death could still occur.
Children with progressive conditions ...
... without the possibility of a cure. Palliative care in these children may be for many years.
Children with conditions not usually considered progressive ...
... but which may cause weakness and make children more likely to get complications. These children may deteriorate unpredictably.
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 TopWhat is the goal of palliative care?The goal of those working with you, your child and family/whanau is to:
Back to TopDoes 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 TopWho provides palliative care?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, mental health professionals, dieticians and others. 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. Specialist Palliative Care Team The Starship Paediatric Palliative Care Team are available to provide advice and work together with the health professionals providing care for your child. See the Starship website for more information about the Specialist Palliative Care Team. Back to TopWhere can palliative care be delivered?Palliative care can be delivered in a number of settings. These are the main options available in New Zealand:
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. 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. 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 be provided in a hospice and some children and families/whanau have chosen to use their local adult hospice for part of their care. Back to TopWhat does palliative care involve?All children receiving palliative care have unique needs. Palliative care involves some or all of the following: Back to TopSymptom managementSymptom 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 TopAdvance care planningAdvance care planning involves 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. Advance 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:
It's important to remember that:
Back to TopRespite care and carer supportYou 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 TopEnd of life careThe 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 TopBereavement careYou may find the following fact sheets on this website helpful: Back to TopWhere to go for more information and supportStarship Children's Hospital (NZ) The Starship website provides information about the specialist palliative care team who are available to provide advice. International websites
ACT - The Association for Children's Palliative Care (UK) www.act.org.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.
British Columbia Children's Hospital (Vancouver, Canada) www.bcchildrens.ca
Although the resources at this website are Canadian, most of the content is also relevant to New Zealand families. The most important exception is that medicines referred to may have different names in New Zealand, or may not be available. Also, where support services are mentioned, these apply only to Canada. There is content on making hard decisions about care; parenting a dying child; symptom management and talking about death.
New Zealand organisations and support groups
One of the following may be helpful to you depending on your child's illness:
Canteen www.canteen.org.nz
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 www.carers.net.nz
Carers NZ provides information, advocacy and support for New Zealand's family, whanau and aiga carers.
Child Cancer Foundation www.childcancer.org.nz
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 www.cfnz.org.nz
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 www.idfnz.org.nz/home.htm and www.idfnz.org.nz/kids/index.htm
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 www.heartchildren.org.nz
Heart Children New Zealand provides care and support to heart kids and their families.
Kidney Kids www.kidneykids.org.nz
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 www.leukaemia.org.nz/how_we_can_help
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) www.ldnz.org.nz
LDNZ is a support group for families affected by lysosomal storage diseases.
Muscular Dystrophy Association of New Zealand www.mda.org.nz/about.html
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) www.nzord.org.nz/default.asp
NZORD provides New Zealand's central starting point for information about rare diseases.
Parent to Parent www.parent2parent.org.nz/start.htm
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 TopAcknowledgementsACT - The Association for Children's Palliative Care. UK.
Website: http://www.act.org.uk/
Service Improvement Network Project. UK. 2008. Child and Family Wishes Document.
 The Royal Children’s Hospital (Melbourne) Kids Health Info for Parents. Back to TopYour notesEndorsement
This fact sheet was endorsed by PSNZ - 27/07/2011
CopyrightFact 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 - 2012
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