Many patients with MND, their families and the health care professionals involved in their care, fear that death form MND will be distressing – particularly choking to death.  However the experience of palliative care services involved in the care of MND has shown that choking is a very rare occurrence and most people with MND die from respiratory failure without distress.

There have been three large surveys of patients with MND and these have shown that dying from MND is peaceful in most cases:

In 1981 Dame Cicely Saunders and staff at St Christopher’s Hospice looked at 100 people with MND and showed that “nearly all …..died peacefully”⁽¹⁾.

In 1992 a further study from St Christopher’s Hospice looked at 124 patients cared for from 1980 to 1990⁽²⁾.  Of this group 106 (94%) died peacefully and no patient choked to death.  The common mode of death was “acute on chronic respiratory failure” In this study there was one patient who died following a choking episode but at a post mortem there was no evidence of blockage of the airways

In 2001 a study from the Wisdom Hospice and the MND Clinic in Munich looked at 171 patients with MND⁽³⁾.  Overall 91% of patients were felt to have died peacefully – from the reports of the nurses and families - and no patient died choking.  90% of this patient group died from respiratory failure and 6% from heart failure.

In all these studies palliative care was provided with careful assessment and management of the symptoms and support of both the patient and their family.  The symptoms that were encountered in the final stages of the disease were commonly breathlessness, pain, dribbling of saliva and restlessness.  Medication is required to help relieve these symptoms:

• Morphine or diamorphine to reduce pain / breathlessness
• Midazolam, a sedative, to reduce restlessness
• Glycopyrronium bromide to reduce the chest secretions and saliva

With the use of these medications the symptoms can be minimised and distress relieved.

The Motor Neurone Disease Association has produced the Breathing Space Programme to encourage discussion about dying from MND and to help patients, their families and their carers at this time.  There are leaflets for health care professionals which explain the medication that can help and a box is provide to store this medication at home.  In this way the patient and family are able to discuss the care at the end of life and the medication can be provided so that it is readily available if required.  The Programme has been helpful in allowing these discussions and enabling patients to receive medication they require, even if their own professional carers are not available out of hours.

The majority of hospice and specialist palliative care providers are involved in the care of people with MND and their expertise and advice is available to enable patients to die peacefully, without distress.

Prepared by:

Dr David Oliver
Consultant in Palliative Medicine
Wisdom Hospice, Rochester
Honorary Senior Lecturer
Kent Institute of Medicine and Health Sciences, University of Kent

References:

1. Saunders C, Walsh TD, Smith M.  (1981) Hospice care in motor neuron disease. In: Hospice: the living idea. Saunders C, Summers DH, Teller N (editors). Edward Arnold
2. O’Brien T, Kelly M, Saunders C. (1992) Motor neurone disease: a hospice perspective. British Medical Journal 304: 471- 3.
3. Neudert C, Oliver D, Wasner M, Borasio GD.  (2001)The course of the terminal phase in patients with amyotrophic lateral sclerosis. Journal of Neurology 248: 612-616.
4. Motor Neurone Disease Association (2003)

Breathing Space Kit and Programme
Death and Dying – for professional carers
How will I die? – written for people with MND and their carers