Parkinson’s disease permanent care unit: managing the chronic-palliative interface

Abstract

Background:

Parkinson’s disease (PD) eventually leads to severe functional decline and dependence. Specialized care units for PD patients in need of permanent care are lacking.

Methods:

Patients with severe PD are referred to the PD permanent care unit harboring 30 patients with specialized medical and health care provided by trained staff. Patients need to have intensive medical and care needs, and be no longer able to stay at home or at an ordinary institution. A written and continuously reviewed care plan is made for each patient at admission, with the overriding aim to preserve quality of life and optimize functionality.

Results:

After five years, the PD permanent care unit has cared for 70 patients (36 men and 34 women) with a mean age of 76.6 years and a mean duration of Parkinsonism of 11.8 years. Hoehn and Yahr severity of disease was 3.7, cognition was 25.3 (Mini-Mental State Examination), and the mean daily levodopa dose was 739 mg. The yearly fatality rate was seven, and the mean duration of stay was 26.9 months. Only five patients moved out from the unit.

Conclusion:

A specially designed and staffed care unit for Parkinsonism patients seems to fill a need for patients and caregivers, as well as for social and health care authorities. This model is sensitive to the changing needs and capacities of patients, ensuring that appropriate services are available in a timely manner. There was a rather short duration of patient stay and remaining life span after admission to the unit. Despite the chronic/palliative state of patients at the PD permanent care unit, there are many therapeutic options, with the overriding objective being to allow the patients to end their days in a professional and comfortable environment.

Keywords:

• Parkinsonism
• palliative care
• end-stage disease
• permanent care

Acknowledgements

Many thanks to all staff members and especially the two nurses, Birgitta Wiklund and Lena Hultgren, of the PD permanent care unit who performed many of the assessments and provided much of the data.

Disclosure

The study was not supported by any monetary grants. The author has no connections with the pharmaceutical industry or stock companies which could be considered to be potential areas of conflict.