Researcher Steven Vanderstichelen wants to create a more compassionate world. A world in which we deal more thoughtfully with the end of life, and in which we develop and encourage the knowledge, skills, support and self-confidence to discuss it consciously. It’s a purpose to reflect on, and one we would very much like to know more about.
As a researcher, you have a social responsibility to contribute to society
“I don’t know if I have a concrete purpose in my life, but I see that my daily actions and my study and career choices are always driven by wanting to understand things. In my case, that’s mainly about social phenomena, human behaviour, social interaction, how our circumstances determine our life chances, choices and ideas, and how you as an individual are part of a system that you can never be completely disconnected from. I find that amazingly cool and interesting. And it’s hard for me to keep that curiosity to myself, so I always look for others who have the same kind of drive and curiosity about something. You always learn something from people like that; it’s contagious. I also hope that what I do in my work, in my hobbies, in my contacts with others is meaningful to others in one way or another, that they recognise themselves in it or take something away from it that helps them move forward. That can be in very small ways.”
Compassionate Communities
“As a researcher, you have to be driven in some way to discover and understand things. And I think you also have a social responsibility to contribute to society. That’s our mission as a centre of expertise on Compassionate Communities (COCO). We investigate how communities and environments can offer structural answers to the social challenges surrounding experiences of serious mental or physical illness, death, dying and loss. Personally, I am hugely interested in the unique role that informal caregivers such as volunteers play in palliative care, how they form a bridge between people with care needs, their communities and professional care services, and how they complement professional care delivery with their focus on the person behind the illness."
“With COCO, we also want to find out how policy, our environment and existing community networks can be used to prevent unnecessary suffering when faced with serious illness, death, dying and loss. We study the role that communities, cities, schools and workplaces can play in framing such profound life experiences and making it possible to talk about them. We also have the opportunity to help shape practice through local partnerships and participatory action research, for example in partnerships with cities, towns, neighbourhoods, schools and VUB itself. This way of working is very close to my own ambition to make a difference, be it big or small.”
We vastly underestimate how much life, meaning, connection, passion and humour can be found when people and communities come together to talk about the end of life
“Losing someone or being confronted with serious illness and one’s own mortality are obviously very difficult experiences. And of course, as a researcher you sometimes need to be able to keep a sufficient distance. A healthy sense of perspective and a sense of humour can’t do any harm. But at the same time, there’s a real misconception that facing this confrontation necessarily has to be heavy, depressing and melancholic."
“If I’ve learned one thing from my research, it’s that people still live very full lives during palliative care. We vastly underestimate how much life, meaning, connection, passion and humour can be found when people and communities come together to talk about the end of life and take control of caring for people in their neighbourhood. It encourages people to think more consciously about their own end of life and what their preferences and wishes are. It also creates opportunities and spaces to meet others. Just look at the video that a New Zealand Coffin Club made about their operation and mission. It’s by no means a sad affair!"
Steven Vanderstichelen is also coordinator of the Compassionate Communities expertise centre.
“It’s a good mix of coordination, building bridges, bringing people together and conducting and guiding research."
“With my colleague, Prof Sarah Dury of Belgian Ageing Studies, I try to build bridges between the groups that are part of the Compassionate Communities expertise centre, COCO. In our first year, we’ve mainly been creating spaces and moments to get to know each other, exchanging ideas and brainstorming. This is sometimes a bit of a challenge, but at the same time it’s very rewarding and instructive. We organise open seminars with international speakers (our last seminar was on compassionate art and design and had participants from 21 countries), thinking sessions, internal brainstorming meetings, bilateral discussions and consortium meetings.
“Along with the other research groups that make up COCO, we developed a common vision and mission for the centre. We’ve also developed an interdisciplinary approach to Compassionate Communities, including a research agenda in which all the partners and their disciplines are represented. We’re going to work on this actively. We’ll look for opportunities to collaborate in current and new research projects, while supervising and encouraging master’s and PhD paths and writing project applications. We’re also gradually building a broad social and academic network.
“Our work as coordinators is very diverse and challenging. It offers us unique opportunities to make the link between disciplines and arrive at new insights. You get the chance to work with lots of interesting people who each bring their own infectious passion and drive.”
People who were already facing serious illness or loss were doubly affected by the coronavirus crisis
“I look back on the past year of coronavirus with mixed feelings. It seemed to last forever, but also like it never happened, like a vague dream state from which we’ve not yet fully awoken. I am lucky that I had little to worry about, that I stayed healthy, could spend more time with my partner, that I came out physically more active and healthier. But I also reached my own mental and professional limits a number of times. I had to relearn the boundaries between work and home and missed the structure and direction. I missed the presence of colleagues and the informal contacts between work and the perspective that brings. Above all, I had to learn that, despite digital tools, we cannot expect ourselves and the people around us to function as we would in normal circumstances.
“We have all seen our social networks shrink since the beginning of the crisis, but people who were already facing serious illness or loss were doubly affected. They received limited professional help and missed family members, friends and other contacts outside the family to support them emotionally and practically. We as a community have also been collectively confronted with enormous loss in a short period of time and have been stuck in a kind of fight-or-flight mode for a year now. That takes its toll at some point.
“But in addition to that, we also saw a lot of understanding and support coming up from our streets and neighbourhoods. Neighbourhood networks and key figures proved their indispensable role in recognising and responding to local practical, psychosocial or other care needs. This was expressed in numerous citizen initiatives such as Paraat In Mijn Straat and impactdays.be. It shows there is support in many communities for a more Compassionate Community. That makes me feel hopeful.”
Making the end of life discussible
“I would be delighted if we at VUB and in Belgium could play a pioneering role in the development and further substantiation of Compassionate Communities in Europe and worldwide. I hope our work can contribute to a new discourse on the end of life in Belgium as something normal and social, something that can be discussed matter-of-factly. I hope to be able to contribute to that personally, but more generally I hope I can stay curious and that that curiosity will take me to new places and ideas.”
Would you like to find your purpose as well? Then take a look at The World Needs You under People.