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Palliative Care in Amyotrophic Lateral Sclerosis: A new tool in the fight against an old enemy

explored the dismal state of palliative care in the treatment of patients with amyotrophic lateral sclerosis (ALS), a rapidly progressive and fatal motor neuron disease.1 Hospice and palliative care programs seemed to be losing the public relations battle where ALS was concerned; a patient was even seen on a nationally televised news show, discharging himself from hospice care and choosing physician-assisted suicide with Dr. Jack Kevorkian. The panoply of tools we use for the successful palliation of cancer pain, congestive heart failure, renal failure, chronic obstructive pulmonary disease, and other terminal conditions seemed to be ineffective or irrelevant for ALS patients, who complained of air hunger, dysphagia, motor weakness, thick mucus secretions, and pseudobulbar effects, such as inappropriate affect. Many hospice professionals expressed a loss of confidence in the power of palliative care to make the last days of ALS patients comfortable and fulfilling. As always, there was a call for more research. In 1999, a Columbia University study described a cohort of 121 ALS patients that was followed to assess when patients underwent certain milestones, including use of adaptive aids, pulmonary support, enteral feeding, and hospice care. It was interesting to note that only 37 percent of patients enrolled in a hospice program, 48 percent had a power of attorney and, amazingly, only 18 percent had a “do not attempt resuscitation” order.2 Someday, there will likely be a cure or a successful treatment that will arrest the progression of this terrifying disease. Until that time, the primary care provider must rely on symptomatic therapies. Thankfully, some significant progress has been made in the treatment of ALS in the palliative setting over the last several years. One of the new tools available to the provider of services to patients with motor neuron diseases is the book, Palliative Care in Amyotrophic Lateral Sclerosis,3 edited by David Oliver, Gian Domenico Borasio, and Declan Walsh (Oxford University Press, 2000). This new text has an international feel (the editors are from the UK, Germany, and the US [via Ireland], respectively) and covers models of care in Japan, the Netherlands, South Africa, and other countries. The book begins with a cogent 16page review of the current concept of ALS that includes hypotheses about the pathogenesis of the disease and drugs that may alter survival. (So far, only riluzole, a glutamate release inhibitor has shown any efficacy in human studies, and that was disappointing.4) The following is a discussion of palliative care in general, and