Compassionate Communities: Together for Palliative Care

Tell us a bit about yourselves, your organization, and how you create compassionate communities.

Ali (West Kootenay NAV-Care Collective) – What we do in a nutshell is support people to stay in their homes. We assess the client’s priorities and needs, then match volunteers to meet with them regularly. They provide clients the resources to connect back with the community, they are a regular human connection, especially important for our rural and remote clients.

Christian (CEED Centre Society)– We are a Neighbourhood House, and our main connection to compassionate communities is through our Seniors Activities Group. It’s a place for couples where one partner is living with dementia to come and socialize in a friendly, stigma-free environment. A key measure for our success is that group members connect and continue to support each other outside of the formal group… the very definition of a compassionate community.

Diana (Sea to Sky Hospice Society) – Squamish may be experiencing huge growth, but we are still essentially a rural community wedged between Whistler and the North Shore. In small communities like ours, we can’t afford to work in silos, so service organizations really overlap. We are looking for ways to make compassionate communities our overarching philosophy of care and looking for ways to support underserved groups (like caregivers). It’s a real challenge, but an enormous opportunity, too.

Gail (Trail Hospice Society) – This is our first pilot for Nav-CARE at Trail Hospice, and it’s exciting to see it spread. We provide an upstream connection for people who have just been diagnosed with a life-limiting illness or are starting to experience health transition by helping to line them up with resources and navigate health care needs. We serve populations from small cities to very rural areas with few other resources.

Katie (Revelstoke Hospice Society) – Our hospice society supports long-term care facilities and people at end of life. In addition to a network of volunteers supporting palliative patients, we focus on awareness and education. It surprises me how often I’m asked, “what is hospice?” So, we strike a balance between finding a way to support those who need us and building more general awareness in the community (we are a regular fixture at our local farmers market, for example).

Meghan (Cherryville Food and Resources Society) – We started as a rural food bank in 2010 and evolved into a resource centre in 2020. Rural issues are different… there are barriers not faced by people in urban areas, and I love representing them. The resource centre started as a way to support local people to age and die in place but need to access resources or navigate the health system. For us, compassionate communities are all about collaborative conversations.

Pam (BC Bereavement HelpLine) – The BC Bereavement HelpLine supports anyone who is bereaved … the type of grief doesn’t matter. One particular focus is supporting people after a traumatic loss from homicide, suicide, or substance use. This year, we are hearing from a lot people who are grieving losses due to the BC wildfires. We’ve also got an extensive resource guide that is essentially a “bereavement Google”, and we provide training to healthcare professionals in supporting the bereaved.

Tell us about a compassionate community win.

What were some lessons learned and best practices?

Pam (BC Bereavement HelpLine) – With our BCCPC Seed Grant, we created a four-week online program for people who are bereaved by suicide. More than 200 people from BC (and beyond) took part. While it was a huge success, we were challenged to meaningfully engage such a big group, so we are changing it up for our second round this Fall. The sessions will have an educational segment delivered to the whole group, and an engagement segment with smaller groups in breakout rooms.

Christian (CEED Centre Society)– To share the wisdom that comes from lived experience, we teamed up a caregiver with a person living with dementia to do presentations for healthcare providers and service providers. As for a best practice, we know that what works best is just-in-time information from people who have been through it before, delivered in a relaxed, social session. Too much information at once can be overwhelming.

Meghan (Cherryville Food and Resources Society) – It takes time to build trust in a community, and it’s important not to feel pressured to rush the process. A huge win for us was one time when a woman just showed up at the office saying, “I didn’t know where to go, I just started to drive and ended up here.” It was an ‘aha’ moment for us, and so gratifying to know that people in our community felt safe and supported.

Diana (Sea to Sky Hospice Society) – It’s all about partnerships and connection. For example, we reached out to a local community services society and partnered with the local library. The immediate benefit was that we could host information sessions even though we only had one volunteer available. The longer-lasting benefit is that the organizations learned about each other, and we found lots of other ways to collaborate.

Katie (Revelstoke Hospice Society) – One thing I am very proud of is the installation of a Windphone. A Windphone is a public art/hospice awareness piece where people pick up a receiver and speak to lost loved ones. It’s a permanent space in our community and a tangible testament to the community involvement with community organizations, individuals and local government to make it happen.
Another success I’ll share is our monthly ‘death cafes’… it’s community engagement in an unstructured, un-agenda-ed event. It’s open to the public, all ages, and offers a safe space to talk about hard things. People can come to talk about loss (of whatever kind… family member or pet for example), some people come to talk about their own upcoming death. We welcome between 10 and 13 people each month.

Ali (West Kootenay NAV-Care Collective) – One “win” I’d like to mention is the tenacity of our Board to set us up for success from behind the scenes. A public-facing success is our outreach coordinator based in healthcare facilities and closely connected to healthcare providers to make it easy to refer clients. We’ve also just launched a caregiver support group to address an unmet need.

Gail (Trail Hospice Society) – I’ll just add that we’ve had success educating our community about advance care planning. And shout out our children’s grief support. People often forget that children grieve too.

What are some barriers and challenges to implementing Compassionate Communities?

What strategies help you overcome them?

Ali (West Kootenay NAV-Care Collective) – Community awareness is still an important need. Hospice in Trail is 36 years old, which is a huge achievement, but some people still don’t know about it. They may not tune in to awareness messages until they need it, so it’s an important – and ongoing – need.

 

Gail (Trail Hospice Society) – I think we need to acknowledge that there is a challenge in the term “hospice”. It has a connotation of end-of-life, but we have so many other services to help people. Another enormous challenge is living grant-to-grant. We need stable, predictable funding.

 

Katie (Revelstoke Hospice Society) – Year-round, stable volunteers. Especially over the summer, it’s hard to have volunteers turn up. Our programs – and the needs of the people they support — don’t stop for vacations. This Fall, we are having a volunteer social to foster connections with existing volunteers, and then doing a volunteer drive to promote engagement. Looking ahead, making connections between people is so important in the coming cold, dark months.

Diana (Sea to Sky Hospice Society) –– I agree with volunteer engagement challenges… getting volunteers on board can be a bottleneck. With the time needed to screen and train hospice volunteers, there are not enough hours in the week! So, we are looking at changing our volunteer training to have different levels of training to get people up and running more quickly.

Meghan (Cherryville Food and Resources Society) – As a rural/remote community, we have unique challenges with information dissemination. Hard to believe, but we just got widespread internet access in the last 5 years, so there is little uptake and some resistance. Instead of relying on online channels, we mail a hard copy newsletter, and hand deliver it to others who don’t have mailboxes.

Christian (CEED Centre Society)– Our unique challenge is the age of the groups we serve. They tend to be older, and transport and the ability to use technology can be an issue. How do you reach them if you don’t know they’re there? How do you reach adults who are not socially connected?

 

Pam (BC Bereavement HelpLine) – Funding is always a top-of-mind challenge. There is so much demand, and we just don’t have the staff and resources to meet it. We have an extensive wait list, especially for suicide grief support. It’s tough when you see people who are really suffering and reaching out and having to tell them that they have to wait. The double-edged sword of raising awareness is raising expectations you can’t meet.

What are some strategies to engage local communities and empower individuals to take an active role?

Ali (West Kootenay NAV-Care Collective) – I have a great example from outside of BC about an unlikely compassionate community partnership. NAVCare in Montreal partnered with local RCMP, who knock on doors in neighbourhoods with aging populations, which align with their goals for people to live safe and healthy lives. And seniors feel safe opening the door to a uniformed RCMP officer.

Christian (CEED Centre Society)– )– It may sound strange, but not having a particular focus helps us to engage local communities. We pursue programs when we have a champion to lead the way. This approach works for us, but you have to be at ease with not being an expert and just jumping in. We’ve found it gives us fantastic opportunities to connect with other organizations.
It opens doors to collaborate more, even with organizations that don’t necessarily align. For example, our environmental group promotes compassionate communities because many people get great solace from being in nature. It’s a connection that’s not immediately obvious, but it works.

Diana (Sea to Sky Hospice Society) – – Less a strategy and more a question… how do we educate and inform our boards of directors – and our volunteers – to get them to see themselves as part of this movement? We need to give them the big picture to see how their work fits in.

 

Gail (Trail Hospice Society) – We can have more impact when we use the voice of other agencies who have influence with policymakers. And like others have already said, aligning with agencies who might not seem to have connections results in something more than the sum of its parts.