In partnership with the European Association for Palliative Care (EAPC) Neurology Reference Group, we present a new weekly series where practitioners and researchers will share their experiences in supporting people affected by neurological disease.
Today’s guest writers are healthcare professionals from Bonn in Germany. Andrea Gasper, Gülay Ateş, Birgit Jaspers, Martina Kern and Lukas Radbruch describe the steps they have taken to evaluate and implement better ways of supporting people affected by amyotrophic lateral sclerosis and motor neurone disease.
Since 2010, our specialist home palliative care team in Bonn, Germany, has been regularly called upon by patients with amyotrophic lateral sclerosis (ALS) for support. Our team cares for three to five patients with ALS per year in close collaboration with the motor neurone clinic of the University Hospital. Out of these experiences the desire arose to study the needs and existing gaps in the care of patients and their family (informal) caregivers.
Using a mixed-methods design, we collected qualitative (expert interviews, focus groups, action research) and quantitative data (survey of palliative care facilities, patient interviews, pre-post study). We interviewed more than 50 patients, evaluated a number of interdisciplinary case discussions and surveyed palliative care and neurology services in Germany about the care needs of patients. (1) The evaluations confirmed that patients with ALS and their family (informal) caregivers have huge communication and information needs, for example on nutrition, fears about respiratory failure and other anxieties. The professional caregivers complained about the lack of support on social service consultation and nursing care management.Healthcare professionals were wary of ethically complex situations, for example with decision-making on discontinuation of life-sustaining interventions or requests for assisted suicide. Healthcare professionals not trained in palliative care were also wary of palliative care interventions for these patients, as they considered palliative care for the end of life only. In general, they confirmed a need for case management and networking, considering the high number of health and social care professionals involved in the care of patients with progressive disease.
Following the evaluation, we tried to implement comprehensive care for patients with ALS as part of our specialist home palliative care service. Specific funding from an ALS foundation allowed us to initiate nursing and social care counselling with a palliative care nurse one day per week in the motor neurone clinic of the Department of Neurology. We initiated interdisciplinary team meetings with neurology and palliative care experts and provided support and advice to local specialist home palliative care services in the care of patients with ALS and their family caregivers. A care pathway was developed and implemented in the University Hospital and the Helios Hospital in Bonn. An information leaflet was developed and disseminated to patients with ALS and caregivers. (2) Palliative care topics were included in the yearly education and information day of the motor neurone clinic.
Still a way to go…
In spite of these improvements, we are still struggling with a number of problems. More staff resources are needed for coordination and networking. Some patients need 24/7 nursing care but will only get this if they are on a ventilator, leaving patients, who do not yet want to take this step, short of care. Some specialists don’t do home visits which is a – sometimes insurmountable – challenge for immobile ALS patients living at home. Support interventions for burdened family (informal) caregivers are lacking. And, most importantly, neither the specialist motor neurone clinics nor the interdisciplinary network is known well enough in the region, despite efforts to disseminate information.
We will continue to work on our collaboration with motor neurone clinics and palliative care services to find innovative solutions for these problems, and to improve the autonomy and care of patients with ALS, as well as to strengthen their family caregivers in our region and beyond.
- Modellprojekt zur Entwicklung eines Konzeptes zur Palliativversorgung von Patient*innen mit Amyotropher Lateralsklerose (ALS).
- Amyotrophe Lateralsklerose (ALS) Leitfaden für eine patientenzentrierte Versorgung.
Links and resources
- Catch up with the Palliative Care and Neurology series on the EAPC blog. Next week’s guest writer will be Dr Alessandra Solari, Head of the Unit of Neuroepidemiology, Scientific Directorate, Fondazione IRCCS Istituto Neurologico Carlo Besta of Milan, Italy.
- EAPC Neurology Reference Group (includes links to several useful publications and projects).
- Neurological Palliative Care: FREE webinar presented by the EAPC Neurology Reference Group, Thursday 27 January 2022 at 15.00 CET. Register at https://bit.ly/3AaIDTU
More about the authors…
Andrea Gasper is a Nurse and Case Manager in specialised outpatient palliative care at Helios Hospital Bonn and in the special outpatient clinic for amyotrophic lateral sclerosis at the University Hospital Bonn.
Gülay Ates is a sociologist specialising in the fields of migration, religiosity and palliative care research.
Birgit Jaspers is a philosopher, German philologist and medical scientist, senior researcher and research coordinator, University Hospital Bonn, Department of Palliative Medicine, Germany, and senior researcher at University of Göttingen, University Medicine, Department of Palliative Medicine. Follow Birgit on LinkedIn Martina Kern is a nurse specialising in the fields of Case Management and Train the Trainer seminars in Palliative Care. Lukas Radbruch is Chair of Palliative Medicine at the University Hospital of Bonn and Head of Department, Centre for Palliative Care, Malteser Hospital, Bonn.
SUBMIT APPLICATIONS FOR 2022 EAPC RESEARCHER AWARDS BY 31 DECEMBER 2021…
If you’re making an outstanding contribution to research and clinical practice in palliative care, why not apply for a 2022 EAPC Researcher Award? Apply yourself, or nominate a colleague, for this prestigious award. https://eapccongress.eu/2022/eapc-researcher-awards/