Institute for Palliative Care
Research Projects

• Neurological/geriatric palliative care
• Symptoms control in palliative medicine
• Administration of pharmaceuticals
• Education and training
• Spiritual care
• Hastened death
• Public health
• Telemedicine

Since April 2025, KOmpASS NED (Koordination, Orientierung, medizinische und pflegerische Assistenz und Seelsorge zur Stärkung von Patient:innen und deren Umfeld bei neurodegenerativen Erkrankungen) and KOmpASS ALS (Koordination, Orientierung, medizinische und psychosoziale Assistenz und Seelsorge zur Stärkung von Patient:innen und deren Umfeld bei Amyotropher Lateralsklerose) started within a four years period as follow-up projects of ALS Home-Care, which is already implemented successfully.
Focusing on the nursing aspect, the aim of KOmpASS NED is to expand the established outpatient multidisciplinary care model to patients with neurodegenerative diseases, particularly Parkinsonian disorders, implementing caring and consulting at patients’ homes and also via telemedicine.
Based on the results from the ALS Home-Care project, KOmpASS ALS focuses on multidisciplinary care integrating digital consulting via telemedicine for patients with Amyotrophic lateral sclerosis outside the region of Miesbach/Munich.

Status: Ongoing

Contact: Prof Stefan Lorenzl, Dr Sarah Bublitz

In cooperation with the Department of Health of the City of Munich, a point prevalence study will survey the care of people with non-oncological and especially neurological diseases in hospices and out-of-hospital intensive care facilities in Germany. The aim of this study is to analyze the care situation and access to palliative care for this patient group in more detail.

Status: Ongoing

Contact: Dr Sarah Bublitz, Prof Stefan Lorenzl

This is a collaborative project between the Institute of Forensic Medicine, LMU Munich, the Department of Health of the city of Munich, the Clinic and Policlinic for Palliative Medicine of the LMU Munich, and the Department of Neurology and Palliative Medicine at Agatharied Hospital. To analyze the care situation of people with chronic neurological diseases, the study investigates where and under what circumstances those affected died, and to what extent they had access to specialized outpatient palliative care.

Status: Ongoing

Contact: Dr Sarah Bublitz, Prof Stefan Lorenzl

An increase in chronic diseases in an aging population and shortage in health professionals provokes the need for advancement in medical care, employing Digital Health as potential application. As a consequence, digital health competencies from both, patients and health professionals, are a premise for a successful implementation of digital health resources.
The DHC-HP project is led by Prof Kristina Mikkonen (University of Oulu, Faculty of Medicine, Oulu, Finland) in cooperation with ZHAW School of Health Sciences (Institute of Nursing, Winterthur, Swiss). The projects aim is the assessment of digital health competencies in health professions to reveal potential training needs and deficiencies. Therefore, two qualified questionnaires originally developed in Finland, are translated and validated into the German language.

Status: Ongoing

Contact: Prof Piret Paal, Dr Andrea Egger-Rainer, Nele Stock MScPH (nele.stock@gmx.com)

In Austria, since January 2022 assistance in hastened death is no longer subject to prosecution under specific circumstances. Consequently, nurses will presumably be confronted with questions about assisted suicide and requests for its support. So far, assisted suicide is not part of curricula in education nor advanced training, leaving nurses unprepared for this ethically and morally burdening challenge. DRAS-P informs nurses about legal uncertainties within their profession and provides thought-provoking inputs to reflect one´s own attitude to assisted suicide, how they would react when confronted with hastened death and if they would be willing to assist.

Status: Workshop

Contact: Prof Piret Paal, Dr Egger-Rainer

Researcher: Fulya Sahinoglu, Master student in Public Health at the Paracelsus Medical University

Publications:

Workshop on hastened death as “space for an appreciative discussion”: A qualitative study

Since June 2021, ALS Home-Care is a research project at the Hospital of Agatharied, Germany for patients suffering from Amyotrophic lateral sclerosis (ALS), a neurodegenerative disease harming motor neurons in brain and spinal cord. Presently, there is no curative treatment for ALS. In consequence, multidisciplinary palliative care for alleviating ALS symptoms is a crucial aspect. The aim of ALS Home-Care is an improvement in outpatient care for patients and relatives by employing a team based care model, allowing patients autonomous and rational decisions.

Status: Finished

Contact: Dr Sarah Bublitz, Prof Stefan Lorenzl

Websites:  Krankenhaus Agatharied - Neurologie, ALS-Hilfe Bayern

Publications:
Homecare amyotrophic lateral sclerosis (ALS): A multidisciplinary, home-based model of care for patients with ALS and their caregivers
Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and Caregivers
Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients

About seventy percent of neurologic diseases have a chronic course associated with a high symptom burden. Consequently, access to profound neurological expertise particularly in palliative care is of uttermost importance and not routinely the case.
In response, TANNE developed a program to provide neurological and neuropalliative expertise (24/7) using point-to-point encrypted real-time video consultations between palliative care patients (at home or in hospices) and the neurological department at the Hospital of Agatharied, Germany.

Status: Finished

Contact: Dr Christiane Weck, Prof Stefan Lorenzl

Partners: Prof Dr Christian Maier (University of Bayreuth), Prof Dr Jürgen Zerth (Katholische Universität Eichstätt-Ingolstadt), Prof Dr Kirsten Brukamp (Evangelische Hochschule Ludwigsburg), AOK Bayern, StatConsult GmbH, MEYTEC GmbH

Publications:
Neurological consultations via telemedicine for specialized outpatient palliative care (SOPC) at home and in hospice (TANNE project): study protocol for a randomized controlled trial

Presently, there is no optimal and uniformly agreed international model of palliative care for patients living with a neurological condition. Commonly cited barriers to the integration of neuropalliative care into practice include educational gaps not only among clinicians, but also among patients and communities. A novel, international, hybrid and asynchronous curriculum with self-study modules and lectures on neuropalliative topics was developed by an international consortium, International Neuropalliative Care Certificate Course | International Neuropalliative Care Society (inpcs.org). The course aims at neurologists, palliative care physicians and all other clinicians interested in the intersection of neurology and palliative care.

Status: Finished

Contact: Prof Piret Paal, Dr Sarah Bublitz

Prevention and alleviation of suffering and pain is an essential part in Palliative Care to improve the quality of life for patients with life-threatening diseases and their families. This significantly increases the need for qualified and competent nurses and trainers in palliative care.

The Erasmus+ funded project NursEduPal@euro (Palliative Care Core Competencies and novel European matrix for educating bachelor-degree nurses) aims to improve and foster high quality education and training in Palliative Care by:
•    Defining core competencies for high quality Palliative Care in Europe
•    Development of innovative education tools and an European matrix as toolkit for implementation into existing nursing curricula
•    Training of educators using the European matrix and education tools

NursEduPal@euro is a cooperation between the Kajaani University of Applied Sciences (Finland), Hogeschool West-Vlaanderen (Belgium), Universitatea Transilvania din Brasov (Rumania), Paracelsus Medical University (Austria) und der European Association for Palliative Care (Belgium).

Status: Finished

Contact: Prof Piret Paal

Publications:
Palliative Care Kompetenzen im Bachelorstudium Gesundheits- und Krankenpflege. Ergebnisse einer Nominalgruppenbefragung in Österreich im Rahmen des EU-Projekts NurseEduPal@euro
Palliative Care: Ausbildungslandschaft Pflege

Education and training is a central aspect for development and improvement of palliative care. In Austria, a broader spectrum in postgraduate palliative care education has developed during recent years, which is well accepted by various health-care professionals. However, palliative care is not only limited to patients in palliative care units. An Austrian study showed that 10% of patients in emergency units are also in need of palliative care. This implies the necessity for implementation of palliative care education and training into existing university curricula for medicine and nursing.

PallAUSTRIA aims to assess the actual status and the development of palliative care teaching at Austrian universities by:
•    Documentation of palliative care in the curricula at medical faculties of all Austrian universities using a (structured) questionnaire
•    Semi-structured interviews with key personnel in palliative care teaching to assess how the actual education opportunities are valued and how this is or can be changed

PallAUSTRIA is a cooperation between RWTH Aachen University, Germany (Véronique Toussaint, Prof Frank Elsner), the Paracelsus Medical University and Dachverband Hospiz Austria (Rainer Simader).

Status: Finished

Contact: Prof Piret Paal

Publications:
Entwicklung der universitären palliativmedizinischen Lehre in Österreich: ein Scoping Review

In consequence to a life-limiting diagnosis accompanied with an increased symptom burden, patients suffering from primary malignant brain tumors may have specific spiritual needs as well as their relatives. From the moment of diagnosis this has to be considered by health care professionals. However, it is unclear how and with which attitude nursing personnel responds to these spiritual needs in particular. This question will be addressed in a master thesis by employing a multicenter-based qualitative vignette study to assess the attitudes of nursing personnel in Austrian neurosurgical wards. The results will serve to improve integration of the spiritual dimension in education and training to provide an efficient support for malignant brain cancer patients.

Status: Finished

Contact: Prof Piret Paal

Researcher: Reinhard Grabenweger, BScN, master student in nursing science at the Institute of Nursing Science and Practice at the Paracelsus Medical University Salzburg; graduated caregiver at the Kepler University Hospital Linz, Austria. Interests and research topics: spiritual care, neurosurgical nursing.

Patients living with primary malignant brain tumors and their relatives may have distinct spiritual needs due to a life limiting progression accompanied with a high symptom burden. The aim of this study is to assess the attitudes of neurological and neurosurgical nursing and medical personnel in Bavaria, Germany with respect to these spiritual needs, by employing a qualitative vignette study and an online survey. Attained results serve for a better understanding and support for patients with primary brain tumors and as basis for future research in health care.

Status: Finished

Researcher: Dr Elisabeth Bumes (senior physician neurology), Daniela Völz (doctoral student); Wilhelm Sander-Therapieeinheit NeuroOnkologie; Department for Neurology, Regensburg University Hospital, Germany