App Icoon
Preferences of patients with Parkinson’s disease for communication about advance care planning
a qualitative study
De abstractcommissie heeft op verzoek van de congrescommissie negen abstracts geselecteerd die tijdens het Verenso najaarscongres 'Buitengewoon Bijzonder' op 28 november 2019 middels een flitspresentatie gepresenteerd worden. Onderstaande abstract is daar een van.
Introduction
Advanced care planning (ACP) concerns discussion on the patients’ needs, wishes, and preferences regarding treatment of (non) disease-specific and end-of-life issues. ACP is considered an important aspect of palliative care that improves quality of life and promotes patient autonomy. Although there is increasing awareness that patients with progressive chronic neurological disease are in need of palliative care including ACP, there is no agreement about the exact timing and content of ACP in patients with Parkinson’s disease (PD). The opinion of PD patients concerning ACP is largely unknown. We aim to explore needs, wishes and preferences of PD patients regarding content and timing of ACP in a qualitative manner.
Methods
Semi-structured in-depth interviews were conducted with 20 patients treated at one tertiary PD referral center. Qualitative analysis was conducted in parallel with data collection using the constant comparative approach.
Results
13 males and 7 females were interviewed. Mean age was 63 years (range 47-82) and mean disease duration 9 years (range 1-27). Most patients had moderately severe motor symptoms (Hoehn & Yahr stage 3). None had severe cognitive impairment. The majority of patients wished to discuss ACP on the initiative of their health care professional (HCP). There was wide variation in the optimal timing of ACP. However, most patients would accept that the HCP would attempt to initiate a discussion about ACP at an early stage. Concerning the content of ACP, patients mentioned they would like to have information about their symptoms, but also about the impact of these symptoms on their daily lives. Other aspects that patients reported they wanted to address in ACP conversations, were resuscitation, euthanasia, nursing care and the risk of developing dementia. Nearly all patients felt they were insufficiently informed about the implications of disease and reported they received suboptimal guidance over the course of their disease. They felt ignorant and uncertain regarding their possible prognosis, the available care and their future disease burden. Wishes and preferences were not related to disease duration or severity.
Conclusion
We conclude that PD patients experience lack of knowledge on individual prognosis and available care. Actively inquiring the need for care and providing guidance in timely decision-making on medical support and treatment may improve patient care during this neurodegenerative illness. Further research is required to optimize communication, including ACP, between neurologist and PD patient.
Auteurs
- E. Kurpershoek MD Phd, aios ouderengeneeskunde, Dept of Neurology, Psychology, Amsterdam University Medical Centre, Location Academic Medical Centre, Amsterdam
- J.M. Dijk, Dept of Neurology, Psychology, Amsterdam University Medical Centre, Location Academic Medical Centre, Amsterdam
- M.A. Hillen, Dept of Medical Psychology, Psychology, Amsterdam University Medical Centre, Location Academic Medical Centre, Amsterdam
- N.M. Medendorp, Dept of Medical Psychology, Psychology, Amsterdam University Medical Centre, Location Academic Medical Centre, Amsterdam
- R.M.A de Bie, Dept of Neurology, Psychology, Amsterdam University Medical Centre, Location Academic Medical Centre, Amsterdam
- M. de Visser, Dept of Neurology, Psychology, Amsterdam University Medical Centre, Location Academic Medical Centre, Amsterdam