Consensus-Based Recommendations for Advance Directives of People with Parkinson’s Disease in Regard to Typical Complications by German Movement Disorder Specialists

Abstract

A huge proportion of people with Parkinson’s disease (PwP) in Germany have written an advance directive (AD). However, the content of these forms in regard to specific Parkinson’s disease (PD)-related complications is rather low. There is an urgent need to specify ADs of PwP and consequently to improve decision-making concerning end-of-life aspects for affected patients. Evidence- and consensus-based PD-specific recommendations for ADs might help to close this gap. A Delphi study with two online Delphi rounds was initiated. Initial recommendations were built on findings from previous studies and derived from evidence-based literature. Consensus on recommendations was defined as ≥80% concordance regarding clarity of formulated aspects and relevance for clinical practice. A total of 22 experts (15.2% response rate) predominantly from the workgroup ‘neuro-palliative care’ in Germany performed two Delphi rounds. Consensus was achieved for 14 of 24 initially presented recommendations. Recommendations relating to dopaminergic therapy as well as to non-oral therapy options were considered important by the expert panel. The recommendations should be taken into account when developing and giving advice on ADs for PwP. Health professionals should be trained in counselling ADs of PwP and in integrating these recommendations in ADs during the disease course of PD.

Analysis of Parkinson’s Disease Outpatient Counselling for Advance Directive Creation: A Cross-Sectional Questionnaire-Based Survey of German General Practitioners and Neurologists

“…PD-specific recommendations for ADs concerning PD-related complications were evaluated by a group of neurologists and GPs by completing a questionnaire. These consensus-based recommendations were developed in a previous study of our research group [ 5 ]. Physicians were also asked to give their estimation to the current status quo concerning the palliative guidance of their patients with PD.…”

“…As no curative treatment has been found yet, the disease inevitably leads to progressing motor and non-motor symptoms [ 2 ]. Those symptoms can cause a loss of autonomy, forcing the treating physicians to adapt therapies regularly in order to meet the needs of people with PD (PwP) [ 3 , 4 , 5 , 6 , 7 ]. Further, physicians have to support PwP in planning future treatments in advance for when PwP become unable to express their wishes [ 8 , 9 ].…”

“…Unfortunately, no official guidance for writing a specific AD has been implemented yet [ 22 , 23 ]. To improve AD-creation of PwP, our group previously established consensus-based recommendations addressing PD-specific complications and therapy for implementation in ADs [ 5 , 21 ]. However, it has been unclear yet how treating physicians in an outpatient setting value those recommendations and whether those have been already implemented in clinical practice.…”

Patient Safety in a Box: Implementation and Evaluation of the Emergency Box in Geriatric and Parkinson Patients

“…This can lead to diagnostics or treatments that are not within the actual wishes of the patient [ 23 ]. Previous studies reported that a high amount of PD patients have advanced directives, so their use in the inpatient setting should be ensured [ 24 , 25 ]. The emergency box could be of help here, as the advanced directive is mentioned in the inlet as well.…”

Consensus-based recommendations for psychosocial support measures for parents and adult children at the end of life: results of a Delphi study in Germany

“…In accordance with similar studies [36,40,41], each recommendation was considered consented when ≥ 80% of participants scored the item 1 (strongly agree) or 2 (somewhat agree) for both relevance and feasibility. Although the Delphi method does not require items that achieve a high level of agreement in the first round to be added to the second round [42], in the present study, the authors (F.A.H., L.G.)…”