Role of the palliative care physician in the motor neurone disease clinic

In partnership with the European Association for Palliative Care (EAPC) Neurology Reference Group, we present a new weekly series where practitioners and researchers will share their experiences in supporting people affected by neurological disease.

Today’s Guest Writer is Dr Siwan Seaman, Consultant in Palliative Medicine at Marie Curie Hospice Cardiff and the Vale, Penarth, Wales, United Kingdom, who runs a multidisciplinary clinic for patients with motor neurone disease (MND). Here, she explains her role, and that of the clinic team, in helping a patient and his family to manage the practical and emotional hurdles they encountered during their journey with MND.


Dr Siwan Seaman

I remember clearly the clinic when I first met Mr D, who attended with his wife and son; I would get to know all three of them well over the next 20 months. Only a month earlier, he had received his diagnosis of motor neurone disease (MND). I saw him with the consultant neurologist that I work closely alongside in the multidisciplinary clinic in Cardiff.

During that first interaction it was clear that Mr D did not truly believe that he had the diagnosis, nor was he ready to accept the progressive neuro-degenerative nature of the illness. I suspect this was especially difficult for him because he had always been very fit; in his youth he had played sports at a high level and was still walking eight miles a day at the time of diagnosis.

We needed to respect his wish to be optimistic and to ‘fight this’, which persisted until the last days of his life, whilst also helping him and his family manage the practical and emotional hurdles they encountered along the journey. We worked to find ways to help them to plan for the future using a ‘what if’ and ‘just in case’ approach. He was not keen to accept that he might require interventions such as a feeding tube or non-invasive ventilation (NIV), but when he needed these things he did willingly consent and started on nocturnal NIV 10 months after diagnosis.

Every member of the multidisciplinary MND team played their part in providing the care Mr D required at different stages of his illness. Our clinic team comprises a care coordinator, consultant neurologist, respiratory nurse and palliative care consultant (me). We also work closely with the community allied healthcare professionals and hold a virtual multidisciplinary meeting with the community physiotherapist, occupational therapist, speech and language therapist and dieticians involved before each clinic.

Strong communication between team members is essential

On assessing patients’ current problems, and in anticipating future difficulties, strong communication between the team members is essential to find solutions and ensure the correct members of the team are addressing each issue. I describe my role in the team to new patients as aiding the management of tricky symptoms and supporting with advance care planning, the latter being particularly important in this patient population, given the high prevalence of associated cognitive change (up to 50 per cent of all patients).

In Mr D’s case he had hoped to remain at home but as his care needs escalated, and when he became dependent on NIV 24-hours a day, his existing continuing healthcare package was not meeting his needs and he was admitted to the hospice, under my care. He was still struggling to accept that he was approaching the end of his life despite now being non-ambulatory, artificially fed, dysarthric, and extremely breathless when not on the NIV for more than a couple of minutes.

Most of our patients with MND die at home but when they choose to come into the hospice, or if circumstances dictate this, I like to think that the patient and their family benefit from continuity of care from diagnosis to their last days.

Links and resources


REGISTRATION OPENS SOON FOR THE EAPC 12th WORLD RESEARCH CONGRESS – 18 to 20 MAY 2022.  Registration now open https://eapccongress.eu/2022/ 

This entry was posted in EAPC Task Forces/Reference Groups, Neurology, PATIENT & FAMILY CARE, SYMPTOM CONTROL and tagged , , . Bookmark the permalink.

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