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Review
. 2023 Jul;22(7):619-631.
doi: 10.1016/S1474-4422(23)00129-1.

Palliative care to support the needs of adults with neurological disease

Benzi M Kluger  1 , Peter Hudson  2 , Laura C Hanson  3 , Radka Bužgovà  4 , Claire J Creutzfeldt  5 , Roop Gursahani  6 , Malenna Sumrall  7 , Charles White  8 , David J Oliver  9 , Steven Z Pantilat  10 , Janis Miyasaki  11
Affiliations
Review

Palliative care to support the needs of adults with neurological disease

Benzi M Kluger et al. Lancet Neurol. 2023 Jul.

Erratum in

  • Correction to Lancet Neurol 2023; 22: 619-31.
    [No authors listed] [No authors listed] Lancet Neurol. 2023 Oct;22(10):e11. doi: 10.1016/S1474-4422(23)00310-1. Epub 2023 Aug 8. Lancet Neurol. 2023. PMID: 37567203 No abstract available.

Abstract

Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. Unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care.

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Conflict of interest statement

Declaration of interests CJC has received research grants from the National Institutes of Health and is secretary for the International Neuropalliative Care Society. RG has received honoraria from Abbott Laboratories and travel support from Sun Pharma and Intas Pharma, and is a board member for the International Neuropalliative Care Society. LCH receives funding from the National Institute on Aging, Centers for Medicare and Medicaid Services Civil Monetary Penalty Fund, National Institute for Nursing Research, and the Patient Centered Outcomes Research Institute. BMK has received research grants from the National Institutes of Health and the Patient Centered Outcomes Research Institute; has received honoraria from the Parkinson Foundation and International Movement and Parkinson Disease Society, Davis Phinney Foundation, and American Academy of Neurology; has received royalties from Elsevier; and is President of the International Neuropalliative Care Society. JM has received research grants from the Patient Centered Outcomes Research Institute, Canadian Open Parkinson Network, Brain Canada, the Canadian Consortium on Neurodegeneration in Aging, the National Institutes of Health, and University Hospital Foundation; has received royalties from Elsevier; and is American Academy of Neurology Vice President, US delegate for Oxford University Press, and on the board of directors of the Parkinson Foundation, and on the board of directors of the International Neuropalliative Care Society (20192–021). DJO has received royalties from Oxford University Press and Springer, and is a board member for the International Neuropalliative Care Society. SZP has received support from the Gordon and Betty Moore Foundation, American Academy of Hospice and Palliative Medicine, Palliative Care Quality Collaborative, Cambia Foundation, Hellman Foundation, Alafi Family Foundation, Stupski Foundation, Archstone Foundation, and Unihealth Foundation; has received received royalties from McGraw Hill Publishers; and is President of Palliative Care Quality Collaborative, on the board of directors of By the Bay Health, and advisory board Chair for Sojourns Scholar Leadership Program. PH is a board member for the International Neuropalliative Care Society. MS is on the membership committee for the International Neuropalliative Care Society. All other authors declare no competing interests. LCH (R01-AG065394) and BMK (K02 AG062745) received support from the National Institute of Aging for this work.

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