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Samantha Winemaker and Hsien Seow, co-hosts of the innovative and popular podcast series, , were interviewed by Devon Phillips.
Drs. Winemaker and Seow will be plenary speakers at the 不良研究所 International Congress on Palliative Care, Oct. 18-21, 2022.听
Devon Phillips (DP): I thought we could start with a little bit about each of you professionally and how you came to came together as co-hosts for the Waiting Room Revolution.
Hsien Seow (HS): I am a heath care researcher and I have been doing work in palliative care for a number of years and I try to improve patient and family experiences.
SW: I am palliative care physician. I work in all care settings but the majority of my work is in patients鈥� homes. Hsien and I have known each other for 17 or 18 years but we really partnered approximately six or seven years ago, both of us at a time in our careers when we were feeling very frustrated that we weren鈥檛 able to make a big difference in terms of moving the needs of healthcare to appreciate that a palliative care should be woven in to the entire the entire illness journey for anyone who is facing serious or progressive life-limiting illness. We were so frustrated that we ended up at a coffee shop discussing some research that Hsien was involved in and that turned into a whole different conversation.
HS: We have been trying to improve the patient experience. One of the gaps is that there is a lot of energy and attention focused on what is palliative care and on early palliative care, but less on what that actually looks like for patients and families. So for the Congress keynote, we are presenting how this movement of the was born from the idea that patients and families deserve better information.
DP: How have discovered what patients and families need? What has this journey been like for the two of you?
SW: For me personally, I have likened myself to Jane Goodall. I feel like I have been doing one big observational study my entire career. I have been at the bedside of thousands of patients. I am in their house sitting beside them with no white coat, no swinging stethoscope. I am surrounded by their family, or friends, or sometimes just the patient alone. And in the home environment, we can have an honest discussion that ends up being a discovery of what their healthcare journey has been like, the good, the bad and the ugly. So from the stories of thousands of real people, themes bubbled up.
Hsien and I spent a lot of time untangling the stories and then we tested what we thought was missing, and some of the hidden gens that people need to know about in order to change their illness journey right from the beginning, essentially drawing on a palliative approach. You are arming patients and families with new skills, new knowledge and new perspectives about being unwell and interfacing with the healthcare system so that they are not at the mercy of whoever they meet. This means that they can be empowered and activated, and they can come forward as truly in control and informed about their decisions.
HS: I would just say that the journey has been one of discovery and it takes time just like any innovation. We had to challenge ourselves to really rethink what we already knew. The biggest challenge is how to unpack that and move it upstream and then turn it into a product that people want. We have learned so much about how important language is, and how be in places where everyday people are which is social media and podcasts. This is a movement to activate. We are very excited to share what we have learned at the International Congress on Palliative Care in October.
DP: You have produced many podcasts on a wide variety of topics. What has the feedback been like?
HS: The feedback from listeners has been amazing. It has been wonderful to be embraced by people in the community, to talk about all kinds of things - death doulas, loss of our pets, many different topics. It鈥檚 been a wonderful experience meeting people all around the world and hearing their thoughts.
DP: We are so very happy we will be welcoming you as plenary speakers at the 不良研究所 International Congress on Palliative care this coming October. In our last congress people from about 65 countries attended. Do feel your messages will resonate with people from all over the world?
SW: We are hoping our messages will resonate quite deeply. We all die; it鈥榮 a human experience no matter country you live in. We believe that people have been waiting for a way to be invited into exploring their relationship with their own mortality more deeply, but have been afraid. For most people, when they feel more in the know, they feel more grounded, more able to plan because you have looked a little bit into the future. It鈥檚 become very clear to us that being informed is an incredibly liberating way to live your life, to travel through an illness.
HS: The biggest thing we face in the field of palliative care is how do we move the care and philosophy we provide upstream, because we believe we can make more of a difference if we provide palliative care earlier. We need to invite patients and families into this conversation to be in the know sooner. Then they can be advocates and champions.
DP: Social media can be an incredible opportunity for societal change. Am I correct that you are harnessing social media to move people forward?
SW: The fact that we are being asked about social media is laughable! Neither of us was ever on social media. I personally was not on social media until May of last year, not even Facebook, nothing. And so it鈥檚 been a huge learning curve. We are trying to harness the power of social media. As a physician, I am being careful of my ethical boundaries and patient confidentiality. It鈥檚 been incredible that we have met so many people, reached so many countries. To think of what we were doing before- you know, emailing our friends and families. I am surprised we weren鈥檛 stuffing envelopes.
We are now connecting with thousands and thousands of people on Instagram, twitter and recently TikTok. We have met other social media pioneers in palliative care, so we can鈥檛 take the credit, but we are certainly amazed!
DP: I think we all are! Your podcasts are amazing. I love is the wide variety of interviews you have- from caregivers to clinical experts. I am thrilled you鈥檒l be bringing your message to the Congress in October. Any last words of wisdom?
HS: We have come to the International Congress for many years and we love Montreal. We are very excited to present. It will be a wonderful to finally meet face-to-face and virtually wherever people can connect, with like-minded people who have the same passion that we do, about palliative care, about improving the patient and family experience, about making the world better. We are very excited to share what we have learned because it has given us hope and fuel in our careers. We hope that people come and listen and take something away that will give them renewed energy and passion.
HS: I think that we who work in palliative care have our marching orders and our call to action. Many of us have found ourselves as advocates. Things have got to change and we have to rise up together. We have to think of creative ways so all of us feel less helpless. I think we have enough passion and enough energy to make this happen.
In addition to their roles at the Waiting Room Revolution, Dr. Winemaker is Associate Clinical Professor, Department of Family Medicine, in the Division of Palliative Care at McMaster University, and Dr Seow is Associate Clinical Professor, Department of Family Medicine, in the Division of Palliative Care at McMaster University.
This interview has been slightly edited for length and clarity.