Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognise and support the work of scientists and clinicians who make an outstanding contribution to palliative care research.
We talk to Dr Maria Heckel, PhD, winner of the 2019 EAPC Palliative Medicine Early Researcher Award, about her work as Head of the Research Team at the Department of Palliative Medicine at the University Hospital Erlangen, Germany, and the research that has led to her award. Maria received her award on Friday 24 May in Berlin.
What, or who, was your inspiration for a career in palliative care?
Dr Maria Heckel: I have always been interested in transitions in life and in the needs of people that are usually not visible in our society. That is where I can feel what makes life valuable. That was my motivation to study social work and also my motivation to work in palliative care.
Can you tell us briefly about the research that has led to your winning this award and some of the main findings?
MH: I was lucky to be engaged in health services research projects on the quality of dying and death (QoDD questionnaire) and the quality of end-of-life care (CODE questionnaire). Two were validation studies and helped to provide validated assessment instruments on the quality of dying and death and on end-of-life care in German language for clinical and research applications. Another project on multidrug-resistant organisms (MDRO) used a multi- and mixed-methods approach to capture a bouquet of perspectives on MDRO management in end-of-life care. National recommendations were developed on an empirical basis of patients, family caregivers, staff members and institutions’ perspectives, experiences and wishes. Integrating the recommendations into practice is still work in progress. This project clearly shows how research findings in palliative care directly influence the quality of life of our patients. This motivates us – researchers and clinicians – and drives quality of care forward.
You come from a social work background, how can we encourage more social workers to undertake research in palliative care?
MH: At least in Germany, social work studies do not necessarily lead to a scientific career. There was a co-operation between the university of applied science I graduated from and the university where I applied for a nursing science doctoral programme. In fact, I had been advised not to inform my then employer about these extra-occupational studies. Some networks are giving advice and sharing experiences for doctorates in social work.
My personal experience shows that social work studies teach some basics of scientific work, but the focus is on training and supporting students to find the most fitting field for their future activity, e.g. clinical social work, street work, work with children and adolescents, gerontology, addiction care, resocialization, family counselling, refugee assistance. Academic careers are neither focused nor fostered on a structural level on the social work ‘side’. On the other hand, academization has become an important issue in social work as well as in nursing in Germany.
Research in palliative care would benefit from active social workers as they are academically socialized in a cross-sectional field, committed to human rights and hold competencies in the fields of practical and evaluation research, implementation, as well as social planning. Social workers are used to the issue of linking research, theory building, science and practice. Social (work) science aims to generate knowledge that is important for shaping social cohesion and civil engagement, to empirically ground socio-political debates and to sustainably ensure security and support structures in the social and health welfare system. Therefore, it adds a more societal-based approach to the patient and family centered approach of palliative care.
Encouraging social workers to do research in palliative care should start with opportunities to qualify at, and graduate from, the faculties in which palliative care centres are placed. This requires a lot of effort and might be time-consuming, and the support of the head of the palliative care centre is indispensable. Even more importantly: research needs time and money.
Acquiring money for research requires good ideas, methodological knowledge, knowledge about funding structures and time. In my opinion, it is really hard, if not impossible, to do research alongside full-time clinical work. That is not only true for social workers but for nurses, physicians and other clinicians as well. Exemptions for research activities should be funded. We need more permanent positions for scientists from different disciplines.
What do you find most challenging about palliative care research, and palliative care researchers in particular?
MH: I perceive a close interaction between clinical practice and research in palliative care research. This contributes greatly to the practical relevance and connectivity of research findings. In my view, the theoretical foundation and methodical depth in palliative care research in general should be extended. Shortcomings may result from the fact that the field is still young and growing.
What trends/changes have you seen over the years, or would like to see, in palliative care research?
MH: In recent years, research (funding, publication) has become more and more competitive. This is good for research quality, in my opinion, but it excludes smaller and non-university facilities from research. I would like to see more efforts to teach research competencies in the field. This would raise quality of research in palliative care and foster multiple perspectives and research questions that match the challenges of health services. In palliative care research, I would like to see funding possibilities to elaborate existing instruments (outcome, quality assessment) and concepts/interventions besides innovation funding.
From my point of view, patient and public involvement is still in its infancy, at least in Germany. We need to explore and develop methods and approaches to successfully integrate the patients’, families’ and the public’s views into research. Otherwise, health services and technology innovations will not be established to their full potential. Technologies, and digitalization in particular, should be accompanied by research on their ethical, legal and social implications (ELSI). Funders require this, but there is still the challenge of establishing valid methods and avoiding ELSI from becoming a fig leaf to circumvent necessary societal debates and developments.
How do you see your role (and palliative care researchers in general) linked to that of clinicians?
MH: I see research in the nursing and medical field as a co-creational process. The role of researchers is to pick up clinical questions and find answers that allow us to establish the best possible, and most efficient, care of patients and families. That means that researchers report their findings back to the clinic and help to integrate them in care. Multi-perspective approaches arise from linking views of all persons that are involved in palliative care.
How do you see your career opportunities in palliative care in your country?
MH: It depends on what kind of career you mean. In a classical academic career in Germany, the doctorate would be followed by a ‘habilitation’ and then the aim is an appointment to a chair or a junior professorship. For me as a social worker and nursing scientist, my opportunities for a professorship might come at the earliest in several decades if medical faculties will ever allow non-physicians to hold chairs. In faculties other than medicine with a focus on palliative care, I might stand a chance. There is (still) a glass ceiling for non-physicians on their way to the top positions. Other opportunities, such as leading a research department or a group of junior researchers, seem more likely, but only in the rarest of cases do they promise a permanent position.
Outside of palliative care, what do you enjoy doing to relax?
MH: I enjoy being with my family and friends, cycling and being outside.
- Read the abstract of Dr Heckel’s plenary lecture, ‘Older people, palliative care and multiple perspectives: My contributions and future directions’ in the EAPC Book of Abstracts for the 16thEAPC World Congress, Palliative Medicine, May 2019. Download a copy here.
- Follow the EAPC World Congress at #EAPC2019 and @EAPCvzw
- Find more information about Maria Heckel on ResearchGate.
- Look out for more interviews on the EAPC blog with Dr Geana Paula Kurita, winner of the EAPC Post-doctoral Award, and Dr Mark Taubert, winner of the EAPC Clinical Impact Award. (Mark’s interview will be published early next week).
The Palliative Medicine Early Researcher Award is supported by Palliative Medicine.