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The Palliative Care Programme in British Columbia

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In her latest blog update, Helena visits Canuck Place Children’s Hospice in Vancouver. To follow along with her earlier blogs: Blog 1, blog 2, blog 3.

Where do I start ?

The Paediatric Palliative Care Programme across British Columbia is a truly integrated model of care delivered across hospice, hospital, community, education and research -to provide the best possible quality of care for children in the province.

Canuck Place Children’s Hospice in Vancouver is the only paediatric palliative care provider covering the province of British Columbia and the Yukon. Compared to the 54 children’s hospice services and specialist palliative care teams in the statutory sector across the UK, we might argue that the UK is adequately resourced.

However, the population size is significantly different – there are approximately 5 million people in BC with a further 50,000 in Yukon compared to approximately 67 million across the UK. In terms of size it is much easier to compare Scotland with BC, Scotland has a similar population size but with an area of 78Km sq it is significantly smaller than British Columbia at 950 Km sq. Providing and delivering a palliative care programme across this size of area is astounding, but also hints at the complexities of managing the care of patients living hundreds of miles away from the hospice or the tertiary children’s hospital.

Hospices across the UK and the province of British Columbia and the Yukon

Canuck Place started with paediatric nurse, Brenda Eng and a dream. Inspired by a visit to Helen and Douglas House Brenda returned to Vancouver with a vision not only of a place where children and families could be together in peace, but also receive world-class care.

Glen Brae Manor in Vancouver was built in 1910. In 1995 with the help of the Vancouver Canucks Ice Hockey Team owner, local businesses and the Mayor of the City of Vancouver, the 16, 000 sq ft mansion was transformed into BC’s first children’s hospice.

Arriving at the hospice you are completely bowled over by its beauty, a mansion standing majestically in the Shaughnessy neighbourhood. Surrounded by lush gardens the area is both tranquil and secluded. It also helped that the sun shone on my first day there!

Canuck Place Children’s Hospice, Glen Brae Manor in Vancouver

The palliative care programme is led by medical director, Dr Hal Siden and the hospice is managed by CEO, Denise Praille. There are approximately 560 children across 240 + different diagnoses on the palliative care programme run by Canuck Place. They have eight beds at this facility and a further four beds at their second location, Dave Lede House, opened in Abbotsford in 2009.

On my first afternoon there I was able to sit in on the weekly hybrid ‘Grand Round’ in the Grand Room of the hospice – a detailed discussion facilitated by Dr Hal Siden which included the children resident in the hospice, those due to be admitted in the next week for respite or symptom control management and the children known to the palliative care programme currently inpatients at BC Children’s Hospital.  All staff from the two hospice sites, hospital and community are invited to the Grand Round discussion from housekeepers, nurses, doctors, allied health professionals, play specialists, counsellors, nurse practitioners, educators, school and the community sector – a total of 30 staff were present. The two hour round finished with case reviews of new referrals into the palliative care programme.

Dependent on the needs of the child and/or family new referrals are accepted into the three tiered model of the palliative care programme for either consult, serious illness provision or full programme. Rather than invite every child with a life-limiting diagnosis into the full programme where demand would outweigh supply, this model enables flexibility and endorses parallel planning, appropriate education and symptom management and more importantly meets the needs and expectations of the child and family.

What struck me most was the beautiful start to the round, the lighting of 4 candles to signify and remember the four children who had died in the last week, a special moment to allow staff who knew them to stop, and take a few minutes of quiet to reflect and remember in their own way the children and families they had cared for.

The Grand Room

It is evident that Canuck place holds a position of leadership and reputational respect across the province. Their model of delivery is truly collaborative. Staff have the equivalent of honorary contracts with BC children’s hospital which is about 1.5 kms from the hospice.  The relationship they have with PICU, NICU and Oncology is truly inspirational (100% of all oncology patients who may need end of life care are known to the hospice).

Dr Hal Siden, Medical Director Canuck Place

Wednesday morning started with an online presentation to the Paediatric Advanced Care Team (PACT Team) in Toronto.  What I hadn’t realised when invited to speak, was 11 am in Toronto meant that it was 8am in Vancouver! Despite this it was really good to share my work and passion for sibling support.

Later I returned to BC children’s hospice site, but this time to the older Shaughnessy Building, where I had the pleasure of meeting Hal’s research team.  Whilst enjoying BC’s hospitality and a box full of donuts in addition to learning about their research I was able to highlight the work that Together for Short Lives does across the UK and discuss our recent work : “Developing  a framework  to help identify children in the UK who would benefit from a palliative care approach.”

Collaboration in research in palliative care is vital and I am thankful that at Together for Short Lives we are able to share Trends in Pediatric Palliative Care Research (TPPCR) an email newsletter distributed by Hal’s Team. The newsletter contains a list of citations pulled from a carefully crafted search strategy featuring the most current and relevant literature in paediatric palliative care research. The newsletter gives a glimpse into the trends of a small, but growing area of research and includes a commentary on a chosen publication by an expert in the field. The latest edition can be found here.

The Siden Research Lab team

Back at the hospice, time with Camara Van Breeman, Nurse Practitioner who leads the community outreach programme at Canuck Place presented another opportunity to compare frameworks of practice and form relationships for ongoing work and meet Gaia, the therapy dog.

Whilst there are many similarities with palliative and end of life care practice in the UK my overriding reflection is there is much to learn from sharing, spending time with other professionals and respecting the work that we all do to improve the quality of life for children and families who need it most. I have had a fantastic few days with the Siden team. Thank you for having me!

Read part five here

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