Non-invasive ventilation in motor neurone disease

Dr David Oliver, Dr Sandip Banerjee and Dr Lisa Vincent-Smith, Wisdom Hospice, Rochester, UK, explain the background to their longer article published in the July/August edition of the European Journal of Palliative Care. Their research shows how a multidisciplinary collaborative approach enables patients with motor neurone disease to be cared for, and die, in the place of their choice.

What happens when a person with amyotrophic lateral sclerosis/motor neurone disease (MND) develops breathing problems and starts non-invasive ventilation? This was a question we felt we needed to answer in the Medway and Swale area in south-east England. A MND Clinical Team had been developed for more than 10 years, supporting 25-30 people with MND in the area. The team, based at the Wisdom Hospice in Rochester, also involved other professionals from the area.

(Left to right): Dr David Oliver, Dr Sandip Banerjee, Dr Lisa Vincent-Smith and the Specialist Respiratory Team at Medway Maritime Hospital

With increasing use of non-invasive ventilation (NIV), a closer relationship between the hospice, the MND team and the respiratory services has evolved. This has developed over the past three years – we now hold joint clinics, with both palliative medicine and respiratory consultants seeing patients together when considering whether to start NIV and in subsequent monitoring.

Medway Maritime Hospital, Gillingham

Two junior doctors, who were interested in palliative care and neurology, undertook the audit. They looked at the notes of the 23 people who had died under the care of the team over a period of three years. The average time from the first symptom to death was 24 months, but this ranged from one to 84 months. Twenty-two per cent of the patients had a percutaneous endoscopic gastrostomy inserted as they had developed swallowing problems.

Sixteen patients were tested for respiratory problems and six started on NIV. They were usually started on NIV and supported at home by the specialist respiratory nurse and seen in the joint clinic. The proportion of people starting NIV – 26% – was higher than found across the UK and similar to several larger MND centres. They continued with NIV until death. Of all the patients, 56% had expressed their views on their end of life care in the form of an Advance Decision to Refuse Treatment, but only one of the six people on NIV had done so.

Of all the patients, 65% died at home, 22% died in the Wisdom hospice and 13% died in hospital – following an emergency admission for pneumonia, after a collapse at home or after being transferred back to the UK following a tracheostomy abroad. It seemed that we met the preferred place of death for 20 patients (87%).

This audit supported that the work we were doing was effective, but it did show that there was a need to be more proactive in discussing advance care planning, especially with people starting on NIV. The regular reviews in the joint clinic, together with the community team, have allowed us to be proactive in providing treatment, have reduced hospital admissions and length of stay and allowed patients and their families to be cared for, and die, where they wished.

This multidisciplinary collaborative approach, based on national standards, has allowed patients with MND to be managed locally, avoiding long distance travelling to tertiary respiratory units. This may be an example for others, as we all need to develop a more collaborative and multidisciplinary approach to patient care.

For more information about the project, please email us.

Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Non-invasive ventilation in motor neurone disease’, by Imogen Nixon, Faustina Popkiewicz, Sandip Banerjee, Isa Vincent-Smith and David Oliver, published in the July/August 2015 issue of the European Journal of Palliative Care (vol. 22.4).  If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.