Background: People with Parkinson Disease (PwP) facing the end of life have complex and specific care needs, but there is not much guidance for the neurologists, hospitalists, and palliative care doctors treating them. What are some of the trends of in-hospital care and palliative care for patients with Parkinson Disease at the end of life?
Design and Participants: A retrospective analysis was conducted at two Cleveland Clinic hospitals of all PwP or Parkinson related diseases (N=727) who were admitted to the hospital and either died in the hospital or were discharged on hospice (N=35). Information was gathered and evaluated on their demographics, clinical data, engagement of multidisciplinary and palliative services, code status changes, invasive care, frequency of admissions, and medication administration.
Results: The end of life (EOL) group was compared to the non-EOL group. The average age for the EOL group was older at 80 compared to 76 years old for the non-EOL group. The median interval from admission to death was 37 days for the EOL group v. 425 days for the non-EOL group. Within the EOL group, 46% of patients had a palliative care consult, 49% had an invasive procedure, and 49% had ICU level of care. For the EOL group, 76% were admitted with a full code status, and during the hospitalization, and all but one changed code status to DNR/DNI. For those that died in the hospital, 75% either had an invasive procedure or ICU level of care. This article also includes a review of management recommendations for inpatient PwP at EOL which covers considerations for hospice referral and management of motor symptoms, pain, psychosis, and gastrointestinal symptoms.
Commentary: Quality of life and symptom burden of PwP are similar to those with advanced cancer (Klugler et al 2019), and studies suggest underutilization of palliative care. Compared to non-Parkinson care, comorbid burden is high with longer lengths of stay, more delirium, infections, pressure ulcers, syncope, falls, and adverse drug events (Gerlach 2011). The findings in this study are similar where we see low utilization of palliative consultation and higher rates of medical intervention for those without palliative consultation. Low PC involvement also associated with mismatch between patient/family expectations and provider’s goals. Some possibilities for low PC utilization are lack of clear hospice criteria for PwP and difficulty in prognostication. Limitations of this study include the small size of the EOL PwP group as well as biases of a retrospective study which relied on automated information retrieval from electronic medical records.
Bottom Line: 1-2 sentences that summarize the findings and link them to changes in practice. More research, including prospective studies, is needed to better provide guidelines to address the complex care needs of PwP at the end of life. Suggestions for improving EOL care for PwP include earlier PC consultation especially in the outpatient setting, integration of PC in the inpatient setting, and raising awareness of inpatient teams to medication challenges and symptom management. This article includes a review of management recommendations for inpatient PwP at EOL which covers considerations for hospice referral and management of motor, pain, psychosis, and gastrointestinal symptoms.
References:
Gerlach, O. H. H., Winogrodzka, A., and Weber, W. E. J. (2011). Clinical problems in the hospitalized Parkinson’s disease patient: systematic review. Mov. Disord. 26, 197–208. doi: 10.1002/MDS.23449.
Kluger, B. M., Katz, M., Galifianakis, N., Pantilat, S. Z., Kutner, J. S., Sillau, S., et al. (2019). Does outpatient palliative care improve patient-centered outcomes in Parkinson’s disease: rationale, design, and implementation of a pragmatic comparative effectiveness trial. Contemp. Clin. Trials 79, 28–36. doi: 10.1016/J.CCT.2019.02.005.
Source: The reference for the article reviewed: Bhansali S, Assaedi E, Yu JRT, tMandava N, Sonneborn C, Hogue O, Walter BL, Samala RV and Margolius A (2023) End of life care of hospitalized patients with Parkinson disease: a retrospective analysis and brief review.Front. Aging Neurosci. 15:1265156.doi: 10.3389/fnagi.2023.1265156
Want to know more about our Palliative Care Education programs? Click below:
- Interprofessional Palliative Care Certificate
- MS-Palliative Care
- Community Hospice and Palliative Medicine Fellowship