Response to: the adult multidisciplinary respiratory neuromuscular clinic

We read with interest Shah, Murphy and Kaltsakas' article “The adult multidisciplinary respiratory neuromuscular clinic” [1]. The authors recognise the positive support which palliative care services can offer adult patients with neuromuscular disorders (NMD), but also that access to services can be restricted for several potential reasons. The authors suggest that indicators for the introduction of palliative care services in NMD would be helpful.

Short abstract

A new “traffic light” system is recommended to identify adult NMD patients who would benefit from advance care planning and possible referral to palliative care services https://bit.ly/3mVDY0P

To the Editor:

We read with interest Shah, Murphy and Kaltsakas' article “The adult multidisciplinary respiratory neuromuscular clinic” [1]. The authors recognise the positive support which palliative care services can offer adult patients with neuromuscular disorders (NMD), but also that access to services can be restricted for several potential reasons. The authors suggest that indicators for the introduction of palliative care services in NMD would be helpful.

We have recently published a traffic light system which can be used to identify adult patients with NMD who would potentially benefit from advance care planning (ACP) [2]. Our traffic light system was modelled on “The spectrum of children's palliative care needs” [3], used commonly in paediatrics, and categorises patients as “red”, “amber”, “green” or “blue” based on cardiac, gastrointestinal, locomotor and respiratory status, recent hospital admissions and prognosis (figure 1). The system also includes events that could lead to a change in category and can be used to indicate that both ACP and referral to palliative care services may be appropriate for an individual patient. Of note, with regard to respiratory function, commencing overnight noninvasive ventilation (NIV) or a significantly reduced lung function would lead to an “amber” categorisation, while commencing daytime NIV or an unrecordable peak flow would categorise a patient as “red”. Our suggestion would be that all patients categorised as “red” should be offered the opportunity to discuss ACP and end of life care.

Figure 1.

Traffic light system to identify adult NMD patients who would benefit from advance care planning. GI: gastrointestinal; NIV: noninvasive ventilation; ICD: implantable cardioverter defibrillator; ICU: intensive care unit. Reproduced from [2] with permission from the publisher.