LIVE FROM THE 15TH WORLD CONGRESS OF THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE IN MADRID . . .
Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognize and support the work of scientists and clinicians who make an outstanding contribution to palliative care research.
Dr Miguel Julião, a visiting professor to the School of Medicine, University of Minho, Braga, Portugal, talks to us about his research career and his thoughts on winning the award yesterday in Madrid.
Can you tell us about your personal experience and involvement in palliative care?
Dr Miguel Julião: I was ‘randomly touched’ by palliative care when, as a medical student, I did an optional module on end-of-life care to obtain credits for my course at the Faculty of Medicine of the University of Lisbon. After the first class, I decided to devote myself to palliative care permanently – and the dream of becoming a plastic surgeon disappeared . . .
At the Faculty, I developed a strong interest in palliative care, investing my time and effort in pre and postgraduate teaching, research and clinical practice in palliative medicine. To expand my view of palliative care from a cultural perspective, I travelled to the United States of America, Canada and Spain, engaging with new and different palliative care perspectives, learning a lot and making many of the important contacts that I still have today.
I had the opportunity to be in touch with many wonderful physicians and researchers. These connections have helped me to build a strong foundation as an academic and physician, supporting my work in palliative care in three areas: caring for people as a physician, teaching palliative care and developing clinical research in palliative care.
I had the honour of opening some palliative care units in Portugal, some of which are considered to be examples of excellence in care. I moved to the University of Minho´s School of Medicine where I hold an academic position as an Invited Professor, with responsibility for palliative care research and teaching to undergraduate and postgraduate students. I also contribute to programmes in other Portuguese universities and post-graduate teaching institutes.
To sum up, most of my time is spent happily dedicated to palliative care: caring for terminally ill people and their families, teaching and investigating in the field of palliative medicine.
What is the current status of palliative care in Portugal?
MJ: Portugal is currently undergoing reform by the National Palliative Care Network in several areas. Although Portugal has been investing in palliative care for several years, there are still many patients and families that would benefit from a palliative care approach and multidisciplinary follow-up.
A huge effort has been made in academic and research areas: Portugal now has accredited and high-quality palliative care Master’s and post-graduate courses. Since this last academic year, two Portuguese Medical Schools have implemented compulsory palliative care education for undergraduate medical students. The teaching experience has been amazing and the students´ feedback is very positive and supportive.
What are your main areas of expertise?
MJ: I have been really interested in the psychosocial aspects of end-of-life care – what I call the ‘end-of-life psychosocial experience’ in which we encounter dignity-related distress, desire for death, demoralisation, feeling a burden and hopelessness. I have the great honour and opportunity of working closely with Professor Harvey Chochinov and his research team at Manitoba University, Canada. I have learned so many things along this journey together, besides the more scientific aspects.
My main research focus is dignity in terminally ill patients and older people, and Dignity Therapy (DT). I defended my PhD thesis on DT in July 2014 at the Faculty of Medicine, University of Lisbon. We developed a randomized controlled trial (RCT) with the aim of studying the effects of DT in several psychosocial variables of palliative care patients and their families.
Tell us about any research projects in which you are currently involved, and any of the main findings so far?
MJ: I continue to be profoundly aware of, and interested in, the ‘end-of-life psychosocial experience’. Terminally ill patients ‘bring’ to their end of life many different issues that are still not entirely understood but deserve a better understanding. I think that each clinical contact is an opportunity to make a change in people’s lives (and in our own life) and is also a clinical research opportunity. We have to be very attentive. This end-of-life experience is a deep and intense one and human behaviour is very interesting to observe and ‘listen to’. I am truly fascinated with this complexity.
After conducting an RCT using a quantitative approach I feel the need to move forward and grow myself as a researcher and as a person. I am also very interested in the qualitative approaches in clinical research.
I am developing research in the concept of dignity for elderly people; in personhood versus patienthood. We are concluding our content analysis of the DT´s legacy documents and are now writing our paper on this issue. It has been wonderful to discover what people say in these documents and what they want to transmit to their loved ones and to the world as their legacy after death.
We published the surprise question Portuguese validation, and we are validating the dignity question and the TIME (This Is ME) questionnaire developed by Chochinov and his co-workers. I would say that our research group is really investing effort, ideas and time in dignity and personhood clinical research. We are also developing research into the impact and acceptance of palliative care teaching in medical students.
So far, we have no data retrieved but it is all taking shape along the way. We are having fun doing relevant research and that´s halfway to being successful!
What does winning the EAPC Clinical Impact Award mean to you?
MJ: This award gives me positive encouragement to continue doing research that makes a difference in academic and research fields. But most of all it’s a clear and important sign that pursuing clinically relevant research makes a difference in the lives of patients and families when they are confronted by terminal illness, and the suffering that is involved.
Winning an award also gives you a responsibility – one that I am taking with ‘my arms wide open’. And it helps to give meaning to those hard, and more depressing moments, where you feel helpless, alone and exhausted as a researcher without any grants to support your ideas and protocols.
What do you like to do to relax and unwind, outside of palliative care?
MJ: I love being with my family – along with patients, they are truly the reason for all I have achieved. All my work – each effort, the ups and downs, each paragraph – is dedicated to them.
I love horses and riding – although I don´t do it often these days – and I love cultivating and caring for bonsai.
I need music – especially classical music and Bach´s organ music – literature, and paintings. Artists have this rare gift of telling the world things that are just not possible in any other way. And at the end of the day … I love people. As a professor of mine once wrote, “Our future is profoundly relational.”
Follow the EAPC Blog to read more posts from the 15th EAPC World Congress in Madrid. We’ll be publishing an interview with Dr Lara Pivodic, winner of the Palliative Medicine EAPC Researcher Award, next week.