| Palliative Care  

How does palliative care help people with neurological disease and their caregivers?

The palliative care out-patient clinic approach for people with Parkinson’s disease improves the quality of life for patients and reduces the caregiver burden for families. The interdisciplinary holistic approach of managing both symptoms and psychosocial and spiritual issues seems to be crucial in achieving these aims.

A randomised controlled trial of palliative care out-patient clinics for people with Parkinson’s disease and related disorders showed an improvement in quality of life for patients at 6 months and reduced carer burden at 12 months (1).  A secondary analysis of the data has been undertaken to look at the areas that may be important in the effectivness of palliative care (2).

 

The study has shown:

  • Quality of life of patients with PD correlated with improvements in symptom burden, spiritual wellbeing and reduced depression, anxiety and grief.
  • Caregiver burden improved with reduced patient symptom burden, reduced patient and caregiver anxiety and increased carer spirituality.
  • The completion of advance directives seemed to have a small effect in reducing caregiver burden
  • For patient with PD the quality of life domain “self as a whole” seemed to be most responsive to the palliative care intervention.  This would seem to reflect the interdisciplinary and holistic approach of palliative care which would address the erosion of self-worth and identity of people with PD, which are often unrecognised.
  • The management of physical and psychological issues would seem to improve outcomes.
  • Spirituality and the feelings of grief of both patients and caregivers were important areas and shows the importance of spiritual care and the increased awareness of these issues for all involved in the care of people with neurological disease.

 

Comments:

This secondary analysis of the larger study does show possible areas where palliative care is able to positively influence the care of people with neurological disease.  The interdisciplinary and holistic approach improves both the management of symptoms and the wider psychosocial and spiritual issues.

 

References:

  1. Kluger BM, Myasaki J, Katz M et al. Comparison of integrated outpatient palliative care with standard care in patients with Parkinson disease and related disorders: a randomized clinical trial. JAMA Neurology 2021; 77(5): 551-560. Bock M, Sillau S,
  2. Adjepong K et al. What’s in the sauce? The specific benefits of palliative care for Parkinson’s disease. J Pain Sympt Manage 2022;63: 1031-10.40. doi.org/10.1016/j.painsymman.2022.01.017
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