This newsletter is designed to create connections across the Long-Term Care and Assisted Living sector at Vancouver Coastal Health. It is an opportunity to share best practice and innovations, celebrate successes and get to know what our colleagues are doing at VCH, and beyond, to bring to reality our vision of Living meaningfully in community with Dignity, Connection and Well-Being. We want to build our COMMUNITY, so please share this newsletter widely and send us your stories! 

In health care, there is much talk of person-centred care and the concept of empowering residents to make their own choices and decisions. At the end of the day, however, it takes courage for residents to try something different and to advocate for themselves to be partners in their own care. It also takes care providers who are willing to listen and who recognize that residents are the true experts in their own well-being. The result of these two factors coming together is a beautiful partnership and improved quality of life for the resident, as shown in Anne's story below.

Finding Peace With Pain

The project began in the Spring of 2021 with a meeting of Dr. Steven Larigakis, lead physician at Point Grey Private Hospital, Peter Doan, pharmacist from CareRx Pharmacy attached to Point Grey Private Hospital, and myself - Anne Speer, a resident.  Upon checking my pain medications, Dr. Larigakis and Peter Doan noted that my current medication regimen was quite complex.  They felt that all the pain medications could be amalgamated for easier management. 

As background, the pain that I have endured was a result of an overdose of radiation that I received after a case of Endometrial Cancer in 2003. The overdose of radiation gave rise to a total of seven pelvic fractures over a period of one and a half years. As well, the discs between my vertebrae were crumbling. All of this damage caused severe pain. The overall response from the several pain clinics and various specialists I visited was that the damage would continue to escalate in the lower spine and the pain would worsen.  In April 2018 I moved into Point Grey Private Hospital.  I was now in a wheelchair and suffered from chronic severe pain. I required monitoring and administration of pain medication 24 hours a day. 

The true meaning of partnership began to form at the beginning of January, 2022. At this time Dylan Alcott, a Paralympian wheelchair tennis champion and disability advocate from Melbourne was named Australian of the year 2022. By listening to him speak I realized that it takes courage to accept my way of life as he also has done. Looking back I realized that I played a major role in forming this partnership. I had sent Dr. Larigakis an email regarding my years of pain and due to his interest and willingness to work together with me to find a solution, I became the third person of the team that included Dr Larigakis and Peter Doan. Every adjustment to my pain medication was a decision made by all three of us in consultation. As a result, I was now understanding my pain better and I felt empowered to manage it and live with it.

After a year and a half the perfect balance was achieved. I am now free to carry on with my life, participating joyfully and fully in activities at Point Grey and creating projects of my own, such as greeting new residents or painting birthday cards for other residents.  I enjoy being engaged with these projects and others.  They give me inner satisfaction and joy and I am able to accomplish these projects knowing my pain is now controlled.  

I can never thank Dr. Larigakis and Mr. Peter Doan enough for believing in me and giving me the courage to try a new approach to managing my pain and accepting it in my life. Dr. Larigakis' continued reference to my courage and that I was "real trooper" led me to adopt the positive energy I needed. I do not feel that this is the end of our amazing journey. This is a major achievement that requires constant belief in following the path we had laid out together - as a team. 

~Anne Speer, Resident, Point Grey Private Hospital

From the Provider's Perspective

The impact of a partnership between residents and care providers is not limited to the residents themselves. To highlight the experience of this partnership to all, we include here the perspectives of Anne's team. 

Peter Doan - pharmacist: This is what I'd considered as "patient-centered" care, with Anne herself being a major if not the most important part of the health decision making process. Thinking back to this whole project, Anne came to us with a cocktail of pain medications. From my perspective, it was an opportunity to use my theoretical knowledge to consolidate everything to a stable dose of Fentanyl. Anne was able to let us know to adjust our process accordingly and slow it down when she found the transition at the beginning was a bit too assertive on our part. For me, it's important to have that feedback so I can disassociate from literature and numbers and treat the actual person in question. I think Anne's perseverance for us to be part of her care after trialing numerous other methods over the past 20 years is a big take away. I see myself as the hired-help that was lucky enough to put my drug knowledge to good use + working with someone ambitious like Steve willing to "rock the boat". In the end it's all about what's best for the resident. The transformation to Anne's optimism and pain-controlled demeanor is the real reward. That puts the hidden smile behind the mask I wear.

Dr. Steve Larigakis - physician: I think for me, Anne's situation boils down to one thing. Curiosity. I saw Anne, clearly suffering, and saw her med regime which looked complex, yet was ineffective. In order to make meaningful changes, we needed to establish a Team. Firstly, I had to hear Anne's story and build her trust. Secondly, I had to build a plan with our pharmacist, Peter, that made sense. And thirdly, we had to get buy-in from the nurses who were going to administer the meds and be our eyes and ears on the ground. Despite all the physical and emotional trauma that Anne had been through, she had the Courage to try a new approach. We were going to do it gradually, with her feedback along the way. This empowered Anne to be an active participant in her care. Gradually, Anne began experiencing longer and longer pain-free periods. Anne also learned non-drug techniques for managing her pain flares, like meditative breathing. Eventually, Anne was having entire days that were pain-manageable, and she was able to go on outings with friends and re-focus on her hobbies like needlepoint and writing. She even started a welcome team for new residents to the facility. Anne is not completely pain-free, but she has come a long way, and now knows she can work with her team to manage her pain and re-engage with life. To make it happen, it took Curiosity, Courage, and a Team.

Resource | A Guide to Having Conversations About What Matters

"Wouldn't it be amazing if we could understand what is most important to the patients we support or care for? If we could have 'What Matters to You?' conversations each and every day that truly invite patients and their family members or caregivers into a partnership in their care?"

This resource from the BC Patient Safety and Quality Council provides tools specific to providers, patients, family members or caregivers around having the conversations that allow for a true partnership in care.  It provides guidance around 3 key steps: 1) asking what matters 2) listening to what matters and 3) doing what matters.  Practical ideas for how homes might embed these questions into current processes are included. 

https://bcpsqc.ca/resource/conversations-that-matter/conversationsmatterfinal/

Guidebook | Culturally Safe Engagement

By definition, person-centred or person directed care needs to be culturally sensitive.  The BC Patient Safety and Quality Council co-created this resource on culturally safe engagement based on conversations with Indigenous patient partners at an event in June 2021.  The pamphlet and guidebook titled "Culturally Safe Engagement: What Matters to Indigenous (First Nations, Métis and Inuit) Patient Partners?" highlight 8 key principles required to create a safer space for Indigenous patient partners. 

https://bcpsqc.ca/blog/culturally-safe-engagement-what-matters-to-indigenous-first-nations-metis-inuit-patient-partners/

Video | Person-led care (Relational Care)

This video, provides a short and simple summary of how to work collaboratively with Indigenous people to meet their health and wellness goals.  It comes from from the Indigenous cultural safety, cultural humility and anti-racism video series created by the British Columbia College of Nurses and Midwives.

 https://vimeo.com/showcase/9636826

Research| Person-Directed Care Planning in Nursing Homes

"Although focused on the individual, person-directed care planning is not an individualistic undertaking; it is a shared undertaking that requires a commitment to work together to navigate the care-planning process..."

This study held focus groups with residents, families and staff of two North Caroline nursing homes to identify key structures and processes for implementing person directed care planning in nursing homes.  To learn more about the strategies for supporting resident and family engagement in care planning, the different roles to support engagement, and the perceived limits on achieving person-directed care planning, see the paper here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6408957/