For families
- Information for families
- What is palliative care?
- Is palliative care only for children with cancer?
- What are the choices of care available to families?
- How do families cope?
- What resources can I access?
- Morphine
Information for families
The website you have accessed Paediatric Palliative Care is primarily an educational resource intended for health care professionals who work with children and families. A lot of the information contained within the text is of a technical nature and is not intended for families.
Some information for families accessing this site has been compiled. This information concerns the meaning of palliative care, implications for the child and family, and resources that are available. It is anticipated this site will be developed further over time. If your questions are not addressed in the text below, you are encouraged to Contact Us for more information. Victorian Palliative Paediatric Program
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. In Victoria, palliative care providers are located in the local community and have a range of services on offer for families including nursing, counselling, bereavement support, and in some cases complementary therapies such as music therapy and massage. To find out more about these and other services see Victorian Paediatric Palliative Care Program.
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. Hospital staff try, where ever 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 and chaplains.
Hospice - Palliative care can also be provided in a hospice. Very Special Kids House in Melbourne is a purpose-built hospice for children. The emphasis is on creating a home-like environment where family and friends are encouraged to be involved. Very Special Kids House also keeps a bed available for admission at short notice. Accommodation is available for parents.
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.
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.
Do call on the supports available to help you. The following is a list of resources (not an exhaustive one) that you may wish to access for information, advocacy, emotional and practical support, and bereavement care.
What resources can I access?
Family and Friends - 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, even if they don't know what to say or do. You may need practical help such as in preparing meals or collecting the other children from school.
The Hospital Treating Team The health care professionals who may be involved in your child’s care include doctors, nurses, social workers, occupational and physiotherapists, educational officers and chaplains. To ensure that you are not overwhelmed with offers of assistance it is important that a member of the team take on the role of coordinator. You may request a coordinator to be appointed to your child’s care 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 can also be organised for all the staff involved in your child’s care as well as key family members. These meetings can be an information session to prepare you for things that might happen during the palliative phase of your child’s illness. Alternatively, families are encouraged to make times with individual staff members as needed.
The Victorian Paediatric Palliative Care Program (VPPCP)
The VPPCP is a statewide program and supports any family of a child/young person with a life limiting illness who is treated in Victoria. It is a consultation-liaison program and will not take over from your child’s treating team. Instead, it aims to enhance the care available to you and your child. The program is staffed by a consultant paediatrician, social worker and liaison nurses. They generally work behind the scenes with the health professionals looking after a child but they are also available to speak directly with families. Any one can refer to the VPPCP for information or support including families.
Phone: (03) 9345 5374
Email: VPPCP
Very Special Kids (VSK)
VSK is a unique Victorian organization, offering an extensive range of support to families of children with a life-threatening illness. It is offered free and without obligation by a team of professional family support workers. Family support workers provide support and when requested link volunteers to families. The organization also provides respite and palliative care at Very Special Kids’ house.
Phone: (03) 9804 6222
Email: mail@vsk.org.au
Website: www.vsk.org.au
Palliative Care Victoria
Palliative Care Victoria develops and provides information to help people living with life-threatening illnesses and their families. Information can also be obtained regarding palliative care services in your local community.
Phone: (03) 9662 9644
Email: infor@pallcarevic.asn.au
Website: www.pallcarevic.asn.au
SIDS and Kids, Victoria
SIDS and Kids Victoria now offers services to the families of all children six years and younger who have died suddenly. Regional programs in some parts of Victoria are provided to families who have experienced the death of a child aged 18 years and younger regardless of cause. Ongoing bereavement support is provided by counsellors and trained parent supporters according to the wishes of the individual or family for as long as required, and includes a range of support groups and other family activities. A 24 hour crisis help line is also available.
Phone: (03) 98229611
Email: melbourne@sidsandkids.org
Website: SIDS and Kids Online (Australia)
SIDS and Kids (Victoria)
Hope Bereavement Care, Geelong 5226 7269
SIDS and Kids Grampians 5320 4169
The Compassionate Friends Victoria Inc
The Compassionate Friends Victoria Inc is a self-help, state-wide service and offers bereaved parent support, information, a 24 hour phone support, grief support groups including a sibling group and newsletters.
Phone: (03) 9888 4944 Freecall 1800 641 091
SANDS - Stillbirth and Neonatal Death Support
Phone: 9899 0218
RCH Bereavement Program
The RCH Social Work Department facilitates a number of bereavement programs for parents, grandparents and siblings. The Social Work Department can provide information about these programs.
Phone: (03) 9345 6111
Website: www.rch.org.au
Morphine
What is morphine?
Morphine is an opioid medication which is highly effective in the management of pain and shortness of breath. There is considerable experience with its use in both adults and children.
How is it given?
Morphine may be given by mouth as tablets or mixture. Doses are generally given every few hours but if pain is stable, a special continuous release form of morphine is available which may be given once or twice daily. Morphine may also be given through a small plastic tube placed in a vein (intravenous) or under the skin (subcutaneous). Portable pump equipment is available to enable children to move about freely if the intravenous or subcutaneous infusions are required.
What is the dose?
Your doctor will work out the appropriate starting dose but it may be necessary to increase or decrease this. The amount of morphine required varies from person to person. It is important that a specialist nurse or doctor supervise changes in the dose as this needs to be done carefully but the correct dose is that which controls symptoms. In order for your doctor to help you achieve the best possible pain control, you will need to let them know if you think your child has unrelieved pain or shortness of breath.
Your child’s body will get used to a certain dose of morphine and the dose may need to be increased over time. This is called tolerance. A dose increase does not necessarily mean your child’s condition is getting worse. Nor does it mean that he or she is becoming addicted.
Shouldn’t you save it until my child really needs it?
Many people associate the use of morphine with terminal care. In fact it is used regularly in the care of patients with severe acute and chronic pain and is recommended for this purpose. Morphine can be used for long periods of time and although the body does develop tolerance, the dose can be adjusted to achieve good control of symptoms. Children are more able to move about and participate in activities if their pain is well controlled.
What are the side effects of morphine?
The side effects of morphine are well known and include:
Constipation a laxative should always be taken regularly by patients on morphine
Nausea and vomiting occurs in some patients but generally settles over a few days
Drowsiness many patients experience some drowsiness in the first few days but this also settles with time
Slowed breathing if the initial dose is too large or increases in dose too rapid, a decrease in breathing may be experienced. This is why your doctor needs to supervise dose changes.
Itching a few patients experience itching and this may be relieved by the use of an antihistamine
Rarely side effects are troublesome. In these circumstances, there are other medications related to morphine which may be used instead.
Will my child become addicted?
Addiction is a condition in which people develop a compulsive need to take a drug because they experience a ‘high’ when they use it. Children taking morphine do so to relieve pain and if their pain stops, they can gradually cease the medication. They do not become addicted. Because the body becomes used to the morphine dose however, it is important that the medication is not stopped suddenly. A gradual reduction in the dose is required.