Motor neurone disease: a hospice perspective.
OBJECTIVE
To describe and evaluate the management of patients with motor neurone disease from the perspective of a hospice.


METHODS
Retrospective analysis of hospice medical and nursing notes.


METHODS
Established 62 bed teaching and research hospice.


METHODS
124 patients with motor neurone disease cared for by the hospice between January 1980 and November 1990.


METHODS
Patient profile; functional status; symptom control and use of opioids; insight; mode and management of death.


RESULTS
124 patients (67 women, 57 men) had a mean age 63.9 years. The median length of admission was 61.5 days (range 1 to 2147). 84 patients (68%) were aware of their diagnosis and its implications when first seen by a hospice doctor. Functionally, the patients were very dependent. Symptoms such as pain, dyspnoea, and insomnia were major problems that responded well to opioids. Many patients were noted to deteriorate "suddenly," and in 58% of cases death occurred within 24 hours of this deterioration. When dying, 106 patients (94%) were peaceful and settled. 101 patients (89%) received opioids during this dying period. No patient chocked to death.


CONCLUSIONS
Although motor neurone disease is an uncommon disorder, many of its symptoms occur commonly in medical practice and must be actively treated. Opioids are both safe and effective for such treatment. The term chocking is both inaccurate and inappropriate in describing the cause of death in motor neurone disease and its use should be abandoned.
O'Brien
T
T
St Christopher's Hospice, London.
Kelly
M
M
Saunders
C
C
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D017051:Hospice Care; D006801:Humans; D007902:Length of Stay; D008297:Male; D008875:Middle Aged; D009020:Morphine / Q000627:therapeutic use; D016472:Motor Neuron Disease / Q000401:mortality / Q000628:therapy*; D010146:Pain / Q000188:drug therapy; D012131:Respiratory Insufficiency / Q000401:mortality; D012189:Retrospective Studies; D013727:Terminal Care
D009020:Morphine