“Don’t separate the specialties in silos.”
There is only one clinical department for palliative care in Austria, and it is at Vienna General Hospital. The chair there has been held since the beginning of the year by Univ.-Prof. Priv.-Doz. DDr. Eva Katharina Masel, MSc, inne. With us she spoke u.a. On their wishes for the specialty of palliative care in Austria and the role of spirituality. She also tells us tips for talking to patients* whose illness will foreseeably lead to death.
Congratulations again on taking up your professorship at MedUni Vienna earlier this year. How do you look back on the first year? What were challenges, what were successes?
E. K. Masel: Thank you! On the one hand, I am an "old hand", as I have been working at the palliative care unit of the AKH since 2010, but on the other hand, my job as head of department is of course new, including obligations and administrative tasks I did not have before.
One challenge was, of course, the pandemic with all its permanent adaptations and regulations, another challenge was and is certainly the since 1.1.2022 valid law on the disposal of the dead. We have to deal with this intensively in the palliative field, because the path of a person willing to commit suicide in Austria includes the visit of two independent medical persons, one of them needs a palliative medical qualification.
I consider it a great success that the master's program I designed, "Master of Advanced Diseases," is expected to be attended by students at the Medical University of Vienna beginning in the winter semester of 2023. The course is designed to understand the role of advanced illness and its assessment, to know the basics of symptom management, to train communication skills, and to gain in-depth knowledge in dealing with ethical, economic, and legal issues.
Another success was that our department was awarded both staff positions and scientific staff during my appointment negotiations, so it is a pleasure to build a team. This is where I see great success in the expansion of palliative care at the university level. It needs us and we are an important clinical, teaching and research specialty. I never tire of emphasizing this, and I am very proud to be the holder of the only chair for palliative medicine at a public Austrian university, at the only clinical department for palliative medicine in Austria.
What are the basic goals of palliative care??
E. K. Masel: Palliative care is a holistic approach to patient care that aims to enable quality of life for patients living with an incurable life-threatening chronic disease. Also accompanying and belonging ones are included.
Modern palliative care grew out of the pioneering work of Dame Cicely Saunders and the hospice movement and is now recognized as a model that can be applied to a range of chronic and life-limiting illnesses. This is also demanded internationally by the World Health Organization (WHO), which recommends equitable access to palliative care regardless of the type of chronic disease.
There is a distinction between primary, secondary and tertiary palliative care. Primary knowledge in the field of palliative care should be available in all medical teams, secondary palliative care is provided by specialized teams – z.B. mobile palliative teams or palliative outpatient clinics – offered and tertiary palliative care is available in more specialized palliative care institutions, such as ours at AKH. Depending on your individual situation, it is important to locate the best care option. In general, the more complex the situation, the more likely it is that hospital care will be required, for example, in the case of severe symptom burden such as respiratory distress, anxiety, pain, nausea, large exulcerating wounds, risk of bleeding, and for psychosocial reasons.
An essential part is talking about goals of therapy, prognosis, and if desired, advance care planning, where contingencies that may arise are discussed in advance to give patients autonomy and security.
What role does spirituality play in palliative care?? How can doctors respond to spiritual needs, where is the line drawn to esotericism??
E. K. Masel: Spirituality should be seen as part of healthcare, as being human in itself involves seeking meaning and purpose in life. The exploration of how patients deal with existential crises and dilemmas can help to positively influence the course of the disease by finding resources.
Optimally, in palliative care, all multiprofessionals, including chaplains, interact with each other as a team. Spirituality cannot be delegated, nor should it consist exclusively of notifying the priest at the end of life, to put it bluntly. This may seem contrary to postmodern thought, which relies primarily on general progress and scientific and technical knowledge.
For me, the difference to esotericism lies in the fact that there are no relevant scientific publications in evidence-based medicine, whereas there are literature reviews and well-published scientific studies on the relevance of spirituality.
When is the change from curative to palliative treatment indicated??
E. K. Masel: The world has not necessarily become easier in this respect, as modern medicine has become very specific thanks to numerous possibilities and advances. There are about 2 million new publications per year. We have very high standards and good hygienic conditions in the industrialized world, which has increased our life expectancy and improved our quality of life. In the meantime, one can no longer have a complete overview of all the intricacies of medicine, but must first and foremost know whom to turn to.
Optimal palliative care requires the cooperation of different medical and psychosocial disciplines with each other and with the patient
Curative and palliative should not be viewed as a "black and white" concept. Rather than this definition, it is more important to always define a therapy goal and assess how and if it can realistically be achieved for an individual patient. However, a desire for therapy alone does not constitute an indication for therapy. In this regard, I think (hemato)oncology and palliative care should work together and not silo their specialties from each other. In this respect, I very much welcome the fact that palliative care is taught early in medical school and also in the nursing profession, so that there is more awareness that palliative illnesses can also have a long course. Palliative care affects all specialties.
Have increasingly personalized and targeted cancer therapies changed palliative care?
E. K. Masel: For palliative care to take place at an early stage, I think palliative care teams should also be open to concurrent disease-related therapies. A large number of controlled studies have demonstrated the positive effects of early palliative care with regard to various outcome parameters, yet practice lags behind here.
For most patients, but also for colleagues, the field is primarily associated with the end of life. At the same time, there are significant advances in the field of hemato-oncology. In this sense, a "double awareness" is necessary to meet the requirements of modern disease-related treatment concepts as well as comprehensive palliative care. You should use the intelligence of the group and exchange information with each other. As a palliative care physician, I also see it as my duty to continuously educate myself in hemato-oncology.
Do you have any tips for talking to patients when it is clear that the disease will lead to their death??
E. K. Masel: My personal advice here would be to first give an invitation to such a conversation. For example, to ask, "Can you summarize what your current status is regarding your condition? Would you like to talk about your prognosis?" Sometimes it takes time until this invitation is accepted. However, this does not mean that one should give up after the first attempt under the motto "This patient does not want this". Such a conversation should not be held between door and door, but rather without sources of interference, if possible. Doctors should also be prepared and not look for findings on the computer.
The more often you have such conversations, the sooner you realize their added value. Despite widespread belief to the contrary, open, honest conversations about the end of life will build trust, reduce anxiety and prevent unrealistic expectations. My recommendation would be to practice such conversations regularly in conversation trainings. One has about 400000 conversations in the course of medical practice. Who can still deny the relevance here?? Just as you get better at surgery the more times you do it, so it is with end-of-life conversations.
What do you wish for the future of palliative care, in general and in Austria?
E. K. Masel: I would like to divide this into the three areas of clinic, teaching and research. At the hospital, I would like to see palliative care expertise grow in all departments. This project will also support our palliative care consiliary service available for the entire AKH. Non-oncology patients* should also have access to palliative care.
For teaching, I am particularly interested in the "medical humanities" as an interdisciplinary field at the interface of medicine and the humanities, cultural and social sciences. I am convinced that the field of palliative care is very diverse and therefore attractive to students because, on the one hand, it focuses on evidence-based symptom relief in the context of serious illness and, on the other hand, it is not only the illness itself that is essential, but also the people who have the illness.
The research projects in our department are diverse and deal with advance care planning, assisted suicide, cachexia, new teaching concepts, medical humanities, patient-reported outcomes, palliative pharmacology, palliative psychiatry and symptom relief, to name a few. As a professor, I see it as my responsibility to be active in clinical practice, teaching and research, and to be involved in the field both nationally and internationally.
For Austria, I would like to see the implementation of the announced nationwide expansion of palliative care in all provinces and at all levels, from basic care by general practitioners and other health care professionals to specialized outpatient services and facilities.
In addition, for the next year, team building is also clearly in the foreground for me. Palliative care thrives on multiprofessionalism and reflective capacity.
And what would you want to see in practice?
E. K. Masel: That before everyone argues about what's best for a patient, talk to the patients themselves. That "advance care planning" or. Give "future conversations" a higher priority. That there are more resources for communication. And that as a palliative team we like to be involved in complex situations. We love challenges!