Pediatric Hospice Palliative Care in Canada

What is Pediatric Palliative Care

“While the number of children requiring palliative care is small relative to adults, the impact of a child’s serious illness and death is extensive. It affects the family as well as the entire community. Moreover, the illnesses that affect children are quite distinct. Palliative care for children must comprehensively address the body, mind and spirit, and requires an inter-disciplinary approach; it is also inclusive of parents and siblings.”

[For more information, see PedPalASCNET, A Network for Accessible, Sustainable, and Collaborative Research in Pediatric Palliative Care].

In their Pediatric Hospice Palliative Care | Guiding Principles and Norms of Practice, the Canadian Hospice Palliative Care Association defines pediatric hospice palliative care as

“…an active, holistic approach to care which focuses on relieving the physical, social, psychological and spiritual suffering experienced by children and families  who face a progressive, life-threatening condition, and helping them fulfill their physical, psychological, social and spiritual goals. Its philosophy is to provide optimal comfort and quality of life, and sustain hope and family connection despite the likelihood of death. Pediatric hospice palliative care aims to provide comprehensive care for children and their families through the living, dying and grieving processes. It affirms life and regards dying as a process that is a profoundly personal experience for the child and family. Pediatric hospice palliative care is based on the same principles as adult hospice palliative care but also recognizes the unique needs of families faced with a child’s illness and death.”

The Role of the Pediatric Palliative Care Team

When a child or adolescent receives palliative care, the family is the unit of care. Delivering age-appropriate care is vital. When a child or adolescent has a life-threatening illness, the tendency may be to treat him or her as developmentally younger than their chronological age. This could cause the child to suffer emotionally and/or socially. Including the child in developmentally appropriate discussions about the illness, and including the family unit, creates an open dialogue and trust between the palliative care team, the family and the child. Open communication is important, especially as the disease advances.  Providing information allows the family, and the child, to make informed decisions. Health Care providers benefit from training in discussions of death.

One of the concepts identified by families as an outstanding practice in palliative and end-of-life care is getting to know each child personally – their likes and dislikes, and what makes them an individual. This way, interventions can be tailored to their needs. Individualized care acknowledges both the child and the family unit’s beliefs and cultural practices, and respecting diversity.

The pediatric palliative care team provides comfort and support to reduce or alleviate suffering. Physical and psychosocial symptom management is required.  The Canadian Psychological Association’s “Psychology Works” Fact Sheet: Pediatric Palliative Care speaks to “Interdisciplinary palliative care, including effective communication, psychological support, spiritual care, comprehensive pain and symptom control, and grief and bereavement support are appropriate from the time of diagnosis. Palliative care goals and life-prolonging goals can be pursued simultaneously. “

The pediatric palliative care team generally consists of many team members – physicians, nurses, personal support workers, clinical psychologists, social workers, dieticians, physical therapists, pharmacologists, spiritual leaders and respite caregivers. Interdisciplinary care across settings can be extremely beneficial to the child and the family unit.

Shared decision making (again, developmentally appropriate) allows the child and the family to actively participate in their treatment and decisions in regards to their care.

Worth a watch: Little Stars is tells the surprisingly life-affirming stories of young people around the world living with life-limiting illnesses.  Against the odds, these children and young adults are making the most of every moment thanks to the support of their loved ones, working in harmony with passionate ‘pain and palliative care’ teams.

Education and Resources

Children and Youth

 

Little Stars: A film about Children’s Palliative Care

We were thrilled to have been contacted by our friend Mike Hill, of Moonshine Movies, recently to let us know about his newest project – Little Stars. In the one-hour Little Stars film they have captured surprisingly life-affirming stories of children around the world (8 countries to date in the USA, South Africa, India, Australia, Malaysia, Italy, Jordan and Russia) living with life-limiting illnesses.

“There’s a lot of misunderstanding about what palliative care is and how it works so parents don’t know to ask for it, or if it’s offered they are scared that it means they are giving up on their child, which is NOT correct. Children are particularly at risk of inadequate pain management due to age related factors, limited access to essential medicines and misconceptions about how to effectively treat their pain. These vulnerable children and families are suffering. They are largely invisible. But for those who are receiving care, the results are extraordinary.

We have focused Little Stars on the surprisingly life-affirming stories of children around the world living with life-limiting illnesses in order to show the immense benefits of this medical specialization. Against the odds, these very special kids are making the most of every moment thanks to the support of their families, in harmony with passionate ‘pain and palliative care’ teams.”

Mike and his team are currently running an Indiegogo campaign to raise funds to complete the film in time to host a red carpet World Premiere of Little Stars at the World Cancer Congress in December this year. Acclaimed British actor DAVID SUCHET CBE has agreed to narrate the film.  This is BIG NEWS for the project as David is remarkably talented and has a legion of fans around the world.

Little Stars is supported by the International Children’s Palliative Care Network, Open Society Foundations, United States Cancer Pain Relief Committee, The Nando Peretti Foundation, Fondazione Maruzza Lefebvre D’Ovedio Onlus, Hospis Malaysia, CIMB Foundation, Pettus Foundation, Amit Iyer Memorial Foundation, The Children’s Hospital at Westmead and Children’s Hospitals and Clinics of Minnesota.  The goal is that Little Stars will do tremendous good in getting this issue on the agenda of governments around the world.  By supporting their campaign you will be joining this coalition in advocating for children’s palliative care. The Indiegogo campaign will close on September 25, 2014 (11:59pm PT) and at the time of this post they are 20% of the way to their goal of raising $65,000.

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