ECWO: Collaboration, care and connection: An interview with Prof Dr Lia van Zuylen
When Prof Dr Lia van Zuylen takes up her appointment in the newly established position of Professor of Palliative Care at Amsterdam UMC in January 2020, she will bring with her more than two decades experience working as a medical oncologist and researcher at Erasmus MC Cancer Institute. More than that, van Zuylen will carry forward an approach to medical practice and research that is both collaborative and deeply caring – and is founded on her unwavering belief in the power of connection. We spoke to her about her own professional journey, what we can do to help our loved ones at the end-of-life and how we can better take care of our own health.
You are both a medical oncologist and a researcher into palliative care. How do you integrate both aspects of your working life?
By working with capable people. Even when I was a student, I was the person who always said, “let’s eat together”. I’ve long seen the power of connection and how working together in a group brings new insights and results. I am curious about people and I know that being a bridge for people to find each other in professional settings is a real strength of mine. I had worked as an internal medicine doctor before coming to Erasmus MC to specialise in oncology. When I first arrived, I had the feeling of coming home because of the people that I found here and the connections that I made. One of these was with (Prof. dr) Agnes van der Heide. She has been one of my most important role-models and I attribute a great deal of my ability to integrate my work as a medical oncologist with really impactful research to working with her. We have had a very close working relationship for nearly 20 years, developing research around the dying phase of life and together we have supervised several PhD students which has been very gratifying.
From the outside, it might appear as if you work in a very difficult area of medicine. What first drew you to oncology as an area of focus?
My mother died from breast cancer when I was 19. I will never know what sort of doctor I would have been without that experience, but I do know that it has been intrinsic to my journey within medicine. It has made me who I am: a doctor specialising in oncology – with a focus on palliative care. When you work in oncology, you make connections with your patients that extend beyond pure medicine. You are obliged to see a much bigger picture that includes what kind of person your patient is, and where they are in their life. I always say that I need to have a feel for who my patient is and then approach their care with that in mind - and within the context of medical possibilities and impossibilities. I consider it a privilege to be given the responsibility to do this by my patients.
Share your needs to give others the opportunity to help
What is the one thing that patients can do, as part of their role in their care – whether medical or end-of-life?
I encourage my patients to be clear about asking for what they need. Often people want to help but don’t know what to do when someone has cancer or is dying. I myself find it difficult to know how to help best when people in my personal life are sick. So I always suggest to my patients that they give other people the opportunity to help, by saying what they need. It is rare that someone is totally alone in this part of their life journey. Sometimes people act like they are on their own when they are not. I remember very clearly this one patient who I was seeing for the first time. She was old and very beautiful, a classic lady. She had no-one with her at the appointment and I said to her, ‘you’re not allowed to come alone again’. She never did.
Your research work has played an important role in your new position as Professor of Palliative Care at Amsterdam UMC. What have been the best – and hardest – parts of this journey?
There are definite outstanding moments including getting research finance for our study on the death rattle. DR is caused by mucus in the respiratory tract and occurs in about half of patients who are in the dying phase. Relatives often experience DR as distressing and so being able to look at more effective ways of preventing this is important for everyone. Getting to know very capable PhD students and working with institutions from abroad are also highlights for me. The hardest? Facing an unexpected curveball when I was approached to apply for the position at Amsterdam UMC.
“If you don’t do it, you are old”
You hadn’t imagined taking up a professorship?
I am 59 and have been at Erasmus MC since 1996. If I had thought about the next decade of my working life, it was within that context. We already have a wonderful Professor of Palliative Care in (Prof dr) Karin van der Rijt and so I had more thought about new research, new kinds of patients. I earned my PhD in 2000 and, even after that, becoming a professor was not one of my professional goals. I also have several close friends who are my age and who are facing serious medical challenges so when I was offered the appointment, I had all sorts of questions in my head: I’m healthy, but can I do this? Do I deserve it when so many people I love are struggling with health issues? But when I discussed it with my family, the decision became clear. My husband was immediately supportive, in the same way he’s always been during my career. I have two daughters and when my youngest daughter, who is nearly 19, said to me, “if you don’t do it, you’re old” something shifted. I knew I needed to take this opportunity to make important bridges in a new environment - and I am fortunate that my close friends have supported me from the beginning and also given me the strength to choose this position. I am quite emotional about saying goodbye to my Erasmus MC family and my patients - but to be able to focus on care for the dying and bring my life’s work to the position is really something special.
The importance of realistic hope
You’ve become a real friend of ECWO and Professor Dianne Bevelander over the years. Can you give us some insight into that?
Dianne is one of my role-models. Starting ECWO and taking it to where it is now shows me what is possible when you have a vision - and that is inspiring. At one point, Dianne asked me to attend a Masterclass and talk about ovarian cancer because some of the funds from the event were being donated to our research. I had never really gone deep into gender-issues but I stayed for the class and was really compelled by what she spoke about. Like her approach to life, Dianne mixes hope and realism in how she talks about what women can do to help each other and help men to change the gender landscape. In oncology, realistic hope is important to enable people to continue living their life, while still facing a very serious illness. Since then, I have attended many Masterclasses and I have grown to really appreciate the mix of women who attend. It’s a refreshing change from the medical and research environment.
You are also a mother of two and juggle many different aspects of what makes for a rich, full life. How do you do that?
My husband and I adopted two daughters when they were very young, and they are now almost 21 and 19. Family really is at the heart of everything I do and so when I took on my new role, I negotiated to work four days instead of five. I need that one day for myself – to spend with my family and my friends. Quality of life is at the core of palliative care and so when you do this kind of work, it makes you examine your own life, to see whether it is in balance. Of course, it’s not always easy to achieve this, but I do my best. I’m not an analytical person and I approach a lot of things by using my intuition and by following my heart. I also try and stay in touch with my energy. Sometimes you have a great deal of energy and you can achieve a lot in a day, and at other times you have less and that is okay. I also know that no woman has a career without a good partner. My husband, Marcel, and I are very much a team when it comes to making the big and small decisions.
Speaking of your husband can you share some insight into the role he has played in raising your children?
Because our children are adopted we came to parenting as equals – both mentally and physically. From the beginning, he’s been one hundred percent committed to equality when it comes to our responsibility as parents. An illustration of this is that once the children came into our lives, Marcel asked to work four days a week – even though it wasn’t standard practice for new fathers at his workplace or something that men requested in general. I didn’t have to ask him to do that – he just did it because he wanted to be able to share our parenting responsibilities equally. My job can be very demanding and emotional and having a partner who has taken this approach to parenting has helped enormously.
Fulfilment of work
What advice would you give young women wanting to start a career but who also want to (eventually) have a family?
I would say follow your heart. But I would also say be proud of the work that you do, and accept that being both a mother and a woman with a career or a job is sometimes difficult. There will be compromises but you must not feel guilty about those. Of course, there were times in my children’s lives that I missed because I was on a conference or at work. I might have some moments of regret about those but I never, ever regret the career path that I have chosen. And there is another side to it: sometimes women find it hard to accept that they have cut themselves off from the fulfilment that work can provide when their children are grown up. It's important that young women think about this when contemplating the road ahead.
Why is it important for women especially to seek out role-models?
I believe that role-models help women see how others deal with the kind of challenges they might face - both good and bad. I have had several wonderful role-models who have contributed to my professional journey, in many different ways. But for me, personally, my earliest role-model was the one who made me believe that a young girl could in fact become a doctor. When I was about 12 I thought my only options were becoming a schoolteacher or a nurse – that was, until I was taken to a paediatrician who happened to be a woman. I only saw her a few times and, in my memory, she wasn’t even a very nice doctor but it was by watching her work that I saw exactly what I wanted for my future. That is the power of a role-model - whether you actively seek one out or passively come across one. They help guide the way to your future.
In closing, do you have any advice for what women should look out for in terms of ovarian cancer?
It’s a very hard disease because the biggest problem is that by the time you start noticing symptoms, the disease has already progressed to a higher stage. It’s not like cervical cancer or breast cancer where you can have regular checks to try to catch them in their early stages. When my patients come in a few months after first experiencing issues and are diagnosed with ovarian cancer, I always say to them that they should not blame themselves. There is no sure way of catching ovarian cancer early so the delay in seeking treatment is not of consequence. I would say too, that if you feel something is not right, make sure your GP is listening well. Of course, our GPs face a difficult task sometimes as there are people who feel they have a lot of medical problems when they don’t. As an oncologist, when I see someone for the first time, there generally has been a diagnosis already. Still, it’s very important to learn to advocate for yourself. In the end, I think my biggest point is that all of us have to realise that life will end. I believe in the role of palliative care because living is also daring to say goodbye. It is essential for everyone left behind. Taking inspiration from James Dean and Mahatma Gandhi, the best we can all do is dream as if we’ll live forever but live as if we’ll die today.
The Erasmus Centre for Women and Organisations (ECWO) is committed to women’s continued advancement into leadership positions across multiple sectors – from multinationals and start-ups to not-for-profit organisations. ECWO supports gender-balanced leadership through its management education, research and events about gender equality, and by coaching female business leaders. Its strong network leads to women empowerment and gender equality to the benefit of business and society.