Objective: The aim of the research was to determine factors influencing decision-making about end of life care in patients with Parkinson´s disease (PD) and their family members.

Background: At the present there is an increasing effort to link palliative and neurological care [1] and to start so-called early palliative care, when there is still time,  before the advanced stage of the disease, to discuss  with the patient the prognosis, the development of an end-of-life care plan, and the possibility of previously expressed wishes.

Method: The factors influencing decision-making were assessed with APND-EOLC questionnaire (The Attitudes of Patients with PND to End-of- Life Care) – area II (2 domains: trust in the doctor/treatment, trust in social support). A scale determining factors influencing decision-making regarding life-saving treatment – seven items with a ten-point scale was used: 1 (not at all) – 10 (to a great extent). The sample consisted of 134 participants, patients with PD (mean age: 71.4 year) and their family members (mean age: 60.3 year).

Results: The factors influencing decision making about life-saving treatment were assessed differently by patients and family members. Statistically significant difference (p=0.0006) was found in the evaluation of the domain “Trust in the doctor/treatment” by patients (mean=70.1, SD=22.7) and family members (mean = 78.3, SD = 21.2). Family members would more often delegate decisions about life-saving treatment to doctors and hoped for life prolonging treatment more often than patients. Single and divorced family members more often reported to trust the doctor/treatment than married ones (p=0.044). A weak correlation was found between the evaluation of the domain “Trust in the doctor/treatment” and total QoL (r=0.283, p<0.021) in the group of patients and also in the group of family members (r=0.359, p=0.001). Using simple regressive analysis the evaluation of QoL was proved to be a predictor of the trust in the doctor/treatment when making decision about life-saving treatment (R=0.293, R2=0.078, t=3,270, p=0.001).

Conclusion: The factors influencing decision making about life-saving treatment were different in patients with and family members. Only marital status and evaluation of QoL were found to be significant factors.

References: 1. Oliver, D.J., Borasio, G.D., Caraceni, A. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. European Journal of Neurology. 2016;23:30-38.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/factors-influencing-decision-making-about-end-of-life-care-in-patients-with-parkinsons-disease-and-their-family-members/