Children, adolescents and a national approach to end-of-life care...

With respect to the implentation of a pan-Canadian approach to palliative care - that includes the four key components that have been elaborated on here - I feel we must ensure that certain populations that have their own unique needs and concerns be able to have those needs met in a unique manner.

I feel that it is critical as we continue to research end-of-life care and develop policies that we do so in a way does not just address the needs of the majority but that also addresses the needs of those whose end-of-life experience is not as well understood.

Children are one such group that has their own unique challenges when it comes to end-of-life care.

Stats Canada (1997) reported that over 6000 children, ages ifancy to 19 years of age die each year in Canada.

The prevalence of life threatening illnesses within Canada are as follows:
10 per 10 000 children aged 0-19 years.

In a health district of 250 000 people, with a child population of about 50 000 in one year:
5 children are likely to die from al ife threatening illness -
cancer (2)
heart disease (1)
other (2)

50 children are liely to have a life treatening illness, about half of whom will need palliative care at any time.

A number of different organizations are responsible for starting and advancing the field of pedatric hospice palliative care. These include the Children's International Palliative Projects and Services (ChIPPS), Canadian Hospice Palliative Care Association Pediatric Special Interest Group (PSIG)/Canadian Network of Palliative Care for Children (CNPCC).

The goal of these groups is to help guide health care professionals in establishing relevant standards of practice, service delivery and policies that will advance the field and ensure that children and families are able to receive optimal care. It is our belief that all the policies and principles that afforded to adults requiring palliative care should also be applied to children and adolescents who require end-of-life care. This includes applying the 4 key components to the process of care.

Children, adolescents and their families are unique and require specialized that is based on the best principles of adult palliative care but that recognizes that they require a specialized and family centred approach. The following are some of the unique needs and issues surrounding children and pedatric palliative care (this list is by no means exhaustive):

• Children are not small adults and therefore their emotional, physcial and developmental issues and needs are unique and they respond uniquely to therapies and drugs.Childhood diseases are often unpredictable in terms of prognosis and duration or trajectory of illness requiring years of caregiving by families and often the loss of income and social supports.
• Families with children who have life threatening illnesses tend to be younger and have fewer available resources.
• Children are not as likely or able to advocate for themselves and therefore rely on family members to make decisions for them at a time when adults are highly stressed and grieving the loss of the child's health.
• Children communicate differently and their understanding of illness, death and dying is developmentally dependent.
• Children's experience and expression of pain is different than adults and requires different and idnvidualized treatment.
• Children experience unique symptoms such as fatique, nausea and vomiting, shortness of breath which are not well understood or treated in children.
• The grief associated with the death of a child is known to have more devastating and long-term implications for the entire family.

These and other considerations (e.g. bioethical considerations) need to be addressed as we begin to develop and implement a national best practices approach to end-of-life care.