We meet online, in each other's office. The backgrounds bear some resemblance. We are both in a setting with a cupboard full of books behind us. Professional literature and novels about palliative care, dying, death and mourning. Rob's closet takes the cake. Five shelves of at least 3 meters long are packed. To a layman it looks disorderly, but there is indeed a system in it. His books are arranged by theme. And a section has recently been added: literature sources for the new book, which he is once again writing with his partner Mariska Overman. It will be a sequel to I don't know what to say .

Anniversary

He says about his anniversary: 'I really think it's an incredibly long time. I'm actually just getting started. I wish I could clone myself six more times and then I could keep all those clones working. After 25 years there really is no less to write or develop about palliative care. Maybe even more, it is getting more and more attention. Earlier you had the pioneers who made the roads passable. Now palliative care has moved more into the attention spectrum of trend followers.
That also results in some pollution. If you just look at Advance Care Planning (ACP), the advance care planning. I do see a kind of double-crossing in this, with on the one hand a kind of ACP 1.0, which mainly involves ticking off lists with only medical subjects. And ACP 2.0 , a variant that transcends medical subjects, and which also deals with the norms and values that lie behind it. And that, in my opinion, is much more what advance care planning should be about. In the world of pediatric palliative care, I think advance care planning is more appropriate to the theory and the authentic drive. A good example of this is the individual care plan.'

This proves it: if anyone is an expert in palliative care, it's Rob. He has been following developments closely for years and writes about them in books and journals. He is also active on social media almost every day. He raises important themes and does not hesitate to put difficult dilemmas on the table. Whether it concerns making death a subject of discussion, the social changes surrounding active termination of life or the accountability of subsidy funds. He keeps people awake and sharp. Rob has something activist in him. And at the same time he knows how to touch the reader in his books with his warm writing style. How does he describe himself?

critical friend

'I cannot separate journalism from activism. There is no journalism without activism in palliative care either. But I am not an activist pur sang. I am much more the spectator, the spectator on the sidelines. And that role has mixed with that activist tendency. That means that I can look through an independent lens, from an outside position. It is also good for the maturation of a movement that there are people who continue to criticize, as a critical friend. I cherish that role. I am a huge supporter of developments in and awareness of palliative care. But that doesn't mean everything that happens is great. And from that independent position I can also name that. I am allergic to waste and sensitive to equality and injustice, for example when certain patient groups receive insufficient attention. And that is one of the factors that brought me into contact with pediatric palliative care.'

Pioneering pediatric palliative care

There was one person who lit the fire for pediatric palliative care in both of us: Marie-José Pulles. Rob remembers it vividly. 'In 2005 Marie-José asked me to write a book about palliative care for children, based on her personal experience after the death of their ten-year-old son Karel. The research for that book forced me to get to know pediatric palliative care better. I have had many conversations with Marie-José, her husband Theo and Karel's brother, Thomas. I also did research in Great Britain, where there were already more developments in the field of pediatric palliative care. I visited families there with an terminally ill child, went to children's hospices, and did literature research. That is how this book was born.

And so I came into contact with a number of other pioneers in the field, with whom I was able to think about rewriting the WHO definition of palliative care to include pediatric palliative care. That was a time when you know as a kind of surfer that you are at the beginning of a wave that will become very big and that will roll over the land at some point. And there was a tremendous eagerness to steer that wave and make it bigger and bigger. I felt honored to be there. And then I was eager to keep following it to see if that movement would continue to move in the right direction. That would retain the individuality, freshness and creativity.'

I recognize that contagious enthusiasm of Marie-José that Rob talks about. At the time, the book In the Sign of Life gave me the proverbial last push to mean something in child palliative care. In the university hospital where I worked at the time, I often felt empty-handed when children turned out to be terminally ill. While care could still mean so much to those families. After reading this book, I joined the Pal Foundation, the predecessor of the current Knowledge Center for Palliative Care for Children. I especially wanted to draw attention to the development of terminally ill children, which continues until the very last moment. And for loss and grief in families, especially in the palliative phase.
Since then, both Rob and I have not let go of pediatric palliative care.

What will require attention in the coming years?

There are plenty of themes to write about in the coming years. Rob does have a few favorite themes that drive him. 'I would like to draw more attention to palliative care within psychiatry. In addition, I will continue to closely follow the movement of the role of euthanasia within palliative care, including pediatric palliative care.
When it comes to children in palliative care, I would like care providers to pay attention to the children they do not meet as patients, but who do meet in the system they work in. There is still a big blind spot in healthcare. Systemic thinking in palliative care may now be more part of the care. Aftercare is another neglected child that is talked about a lot, but with which little is done. These points are in my top 5 anyway.'

Be the drop

As a grief and loss therapist, I get a lot of satisfaction from guiding parents and children. Sometimes a very small thing can make a big difference. Rob is in indirect contact with patients and relatives. Finally, the question: What is your driving force?
“It can make me very happy if I can be a link between something I've written or made and something someone needs, like the Cards of Meaning . I think every order makes two people happy: the person who buys a card, and the person who receives a card. My website palliatievezorg.nl also makes me very happy. Coincidentally, I have a poll on the site since a week. I will receive an email about every submission. My mailbox filled up with hundreds of emails a day. That means that many hundreds of people come to read 'something' on my site every day. I don't know if it's justified, but it certainly gives me the feeling of being meaningful to them.'
Someone once said to me: We are really just throwing drops on the glowing plate. You can call that nonsensical, but that's not how I look at it. You will be just below that drop anyway. So: keep creating those droplets that fall on that glowing plate, and do it for those people who are under those droplets! And I hope that with that fire in my heart I can keep writing for the next 25 years.'