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Elective withdrawal of non-invasive ventilation in motor neuron disease: a neuropalliative care perspective
  1. Fiona I Runacres1,2,3,4,
  2. Rowan Hearn3,5,
  3. James Howe1,6 and
  4. Susan Mathers1,4
  1. 1 State-wide Progressive Neurological Disease Service, Calvary Health Care Bethlehem, Parkdale, Victoria, Australia
  2. 2 Supportive & Palliative Care Department, Monash Health, Clayton, Victoria, Australia
  3. 3 The University of Notre Dame Australia, Darlinghurst, New South Wales, Australia
  4. 4 School of Clinical Sciences, Monash University, Clayton, Victoria, Australia
  5. 5 Department of Palliative Medicine, Calvary Health Care Bethlehem, Parkdale, Victoria, Australia
  6. 6 Faculty of Medicine Nursing and Health Sciences, Monash University, Clayton, Victoria, Australia
  1. Correspondence to Dr Fiona I Runacres, State-wide Progressive Neurological Disease Service, Calvary Health Care Bethlehem, South Caulfield, Victoria, Australia; Fiona.Runacres{at}calvarycare.org.au

https://doi.org/10.1136/bmjspcare-2020-002383

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    We were pleased to read ‘Requested withdrawal of mechanical ventilation in six patients with motor neuron disease’,1 and congratulate the authors. We wish to add to this discussion, including both neurology and palliative medicine perspectives from our clinical practice within the State-wide Progressive Neurological Disease Service (SPNDS). The SPNDS provides multidisciplinary care for approximately 350 patients with motor neuron disease (MND) across Victoria, Australia. It combines specialist neurology, palliative medicine, psychiatry and allied health clinicians and works closely with the Victorian Respiratory Support Service, Austin Health and local community palliative care services.

    Approximately 5–10 patients with MND who attend the SPNDS request elective withdrawal of ventilation annually. Some deteriorate abruptly due to intercurrent illness and elect a palliative approach. They or their medical decision-maker may discuss elective withdrawal to avoid prolonging this phase. Guidance from advance care directives is particularly helpful. Others, a smaller number in our experience, make an informed decision to electively withdraw ventilation when they perceive it has become burdensome rather than beneficial. Most of our experience has been withdrawal of non-invasive ventilation (NIV) in the community and hospice setting.

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    Footnotes

    • Twitter @nonic15

    • Contributors The authors of this submission include: FIR, RH, JH and SM. FIR initiated and planned this submission, and composed the first draft. JH and SM contributed further clinical experience and learnings.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; internally peer reviewed.