Meet Our Team
Q&A with Rachel Neufeld
Rachel Neufeld has volunteered with Two Worlds Cancer Collaboration since 2015. Experienced in both adult and children’s palliative care, she has supported in-person training in India, Nepal and Bangladesh. And supports numerous Sunflower Children’s Network ECHO sessions.
How did you get into healthcare and nursing?
In high school I discovered a love of biology. There was something about learning about how the body worked, and ways that we could fix it that was absolutely fascinating to me.
I thought I was going to go to Med school. My aunt said, "Have you ever considered nursing school? I think you should look into it. I think you'd make a really good nurse."
Then the longer that I was a nurse, the less I wanted to go to Med school. So I plowed through accelerated degrees and was working as an RN by the ripe old age of 20.
Today you work at Canuck Place Children's Hospice, what's your role there?
Now I'm a nurse practitioner. I've been a registered nurse for 15 years, and went back to school for a master's degree for a nurse practitioner and then started this job at Canuck Place Children’s Hospice in 2018.
So a nurse practitioner role is quite different in a lot of ways, but the intention is that it builds from a foundation of nursing knowledge. You get advanced practice training that builds off your nursing experience, advancing into training for diagnostics, diagnosing people, ordering labs, prescribing meds, taking on more of a provider role than a bedside nursing role.
So my role as a nurse practitioner at Canuck Place is quite unique. I am at our Abbotsford Hospice location and I am also one of the nurse practitioners supporting the community care program. We also provide perinatal consults and hospital consultations throughout British Columbia.
Let's just back up a bit, you go to nursing school and then how did you find your way to palliative care?
The first five years of my career were high acuity: trauma, cardiac, all adrenaline, rush, go, go, go! I loved a trauma room, but I also loved the travel nursing gig. So I got my nursing license to move to England.
I moved to London and was doing agency nursing, which meant every day I was picking up a shift in a different hospital all over the city, doing everything and anything from oncology to trauma, medical surgery to labor and delivery.
And my agency called me up one time and asked if I'd do two weeks at a hospice in Central London. At the end of my two weeks the manager asked to talk to me as we both sat down I said, "Can I stay?" as she said, "Can you stay?"
Within those first two weeks, I was thinking, 'This is what I'm supposed to do in the world.' There was a complete 180º shift in my perspective of what I could do to care for patients.
How long have you volunteered with Two Worlds Cancer Collaboration? And how did you get involved?
Since 2015, so almost 10 years now. So I was working with Dr. Gillian Fyles in Kelowna. She was one of our medical leads for the palliative program there. I heard her talking about this work – that they were building a program in India.
I had come back to Canada after a decade of traveling. I had done travel nursing in five or six different countries at that point and I wasn't super happy with some of my international work because it felt sometimes like volunteerism. And then sometimes, I felt like it was just taking advantage of us.
When I heard Gillian talk about doing palliative care internationally, I said, "Hey? I want to do that." I think it was 2009 or 2010, she said, "We're still just getting started. We're not ready to bring in nursing."
My first year to Hyderabad was 2015 and I stayed for three months specifically to focus on the growing community palliative care program that they were just starting.
Another palliative home care nurse went and we shadowed the [home-care] nurses every day for three months to get a sense of what was working. What they felt they needed from us. They had two vans and two teams then.
And I witnessed the way that TWCC also focused on building and empowering. So educating, advocating at the Ministry of Health level, and supporting the local team to do the work not just handing out things. That's what I'd witnessed with other international programs that I didn't like.
So after that year, I knew this was an organization that I really wanted to work with. I really liked the mission and I saw just how passionate people were in volunteering all their time to make this work.
You visited TWCC's program early on and now with the Sunflower Children's Network programs in India, Nepal and Bangladesh. What has stayed with you from these visits?
Two things have stuck with me from India. The immense compassion and desire to do good work from the folks on the ground. That work was mind blowing to me. They work six days a week, often 12-hour days.
The compassion that I saw from them to make things better for these patients blew my mind. I also witnessed a resiliency in the people through enormous suffering that I think has also permanently created a soft spot in my heart for the people in India.
The thing that I love about Nepal that has stuck with me is an ability to accept. They seem to just accept this is what it is and we're going to just move through it. And we're going do the best that we can. There's something about the general calmness of the people.
Bangladesh being the newest for me, it was a very juxtaposed experience. When we went into education sessions there's just this insatiable appetite for learning, "Tell us about this. Tell us what you would do in this situation. Tell us more."
What do you see as the biggest challenges to TWCC and palliative care programs?
I think the challenge that I see for TWCC right now is keeping up with demand.
It feels like it has just grown exponentially. And what I really appreciated in the early days, in terms of this empowerment, [of our partners] to build their own programs and to be self-sustaining. TWCC has the ability to step back when they are self-sustaining.
I see the struggle of people from other countries and other regions saying we want to do this with your help. And we want to help, but we can't do it all. We don't have the budget to support all of this – the fundraising need is huge in order to maintain, let alone build and grow [programs].
And again, you know, it's on the backs of volunteers, most of whom work and have careers, and this is off the side of their desk. We have to maintain boundaries I think right now, because it could be a runaway train.
The other challenge – and I think it's worldwide – is what is palliative care? I see differences in cultures, and the approach to death and dying, but I think one common thread is that nobody really wants palliative care and yet there's this huge demand for it. On the ground, I think a lot of people still struggle with how to present or explain what palliative care is why and how it can be helpful. There's still a fear of it.
I think that's going to be a big challenge, but I see a lot of resilience. Just having witnessed Dr. Gayatri Palat's programs grow in Hyderabad, the rate of change has been mind-blowing. I think the Hyderabad Centre for Palliative Care will be a major component in this because people from all over Asia know about her program and that centre of excellence.
Is there a single experience with a patient or family that stays with you?
There was a young man in Hyderabad that had an oral facial cancer that had eaten away half of his face and neck. His care was an example of navigating wound care and pain management. He wasn't able to actually eat or drink. Watching him try and take a morphine tablet it kind of just dribbled out. It took almost an hour of the team trying to convince his dad to [allow] the team to use a Fentanyl patch.
The father of the house was making decisions, not the patient. That was a big thing to wrap my head around that the patient really didn't have a lot of autonomy themselves.
They convinced them to let allow a Fentanyl patch. And then on the subsequent visits he was so peaceful. He would be sleeping lots and would rouse and smile and thank us every time we came. It was within a week that he died. And his wife, I remember she would follow us out to the van and then just break into tears about how grateful she was to see him more comfortable.
That first visit after convincing them to do the patch that young nurse just broke into tears in the van like it was exhausting for her to try to balance all of this. Then she said to me after the next visit, "The patch worked." And then just seeing her relief in that she was able to see him die much, much more comfortable.
There's so many things we weren't going to improve or change for this family in the end, but that was one piece that they had impact on. I think about him a lot, that young man.
Is there something from your volunteering with TWCC that you bring back to your own practice?
One of the things that has been forefront lately for me is that my perception of what is the right way to do things or what would be a good death. I really don't like using those terms because they're so incredibly subjective.
What I've also learned doing the work in some of these countries is that my perception of the right language, or the right approach, or the right thing to do doesn't always translate. It renews the sense of always coming with curiosity to a family of what their values are and really checking my own biases and assumptions.
I think it's helped me to do work here in BC where we have a vastly diverse population of families. I've noticed that a couple of times where I've said something that I think is soft, supportive language and a family will give me a sign – a non- verbal sign and sometimes verbal – that they don't really know what I'm asking or what I'm saying.
I've used some of my work in other countries to help me come back to what is it that I'm after. How do I reword this? Or how do I come at this in a different approach that makes sense for this family?
I think it's been really helpful doing some of this education with TWCC in other countries where they'll say that doesn't really translate into Nepali or that doesn't make sense in Bangla.
It can be emotionally draining the work that you and your colleagues do in palliative care. How do you cope with that?
Very early in my career I had a mentor say to me, " You're not a stream; You're a vessel. You can only pour out what has been poured into you. So something has to be poured in before you can pour it back out to someone else."
And that visual has stuck with me. Where do I fill my vessel? Everything from being outdoors, being in nature has always been a healing, calming thing for me. Sometimes spending time with people, and then other times it's spending time alone. And sometimes it's actually reaching out to be able to talk to a professional that I can just unload on particularly in the pediatric palliative care. I would say that I've noticed that shift from my previous adult palliative work in that the people around me that want to support me – friends and family – It's harder for them to hear it.
So being outside and moving my body, playing music, being creative, being goofy and letting loose – all of those things. And sometimes it's just a quiet sit in a sauna just doing absolutely nothing.
Is there anything else that you'd like to share or add?
The questions that I get a lot are, "How do you do this work? Why do you do this?"
My perspective has always been since I got into palliative care that there are specialists and people bringing life into the world and we need specialists helping life leave the world.
Particularly with children, it's unfortunate that there are some of these things that we just cannot fix. The passion of my work is to make sure that we help them live as well as they possibly can with what time they have and there's joy in that.
It's reduction of suffering, yes, but it's also helping them live well and live fiercely and boldly That is the part of the job to me that keeps me going when we really get to help a family identify that and focus on it. And find meaning in the time that they have together.