RESPONSE TO THE PHONE GAME

by Mihaly Lenart, FL

The title refers to the paper by Bedlack, Silani, and Cudkowicz (in the following "authors"). It takes a critical view at the communication among ALS patients (PALS) and their caregivers, in particular at the spreading of rumors and misconceptions about ALS treatments, specifically with IPLEX. Given the authors' concern, my question to them is this:

If you are on death row facing also years of torture, and suddenly you are given a gleam of hope to delay the inevitable or even escape by following unproven directions, what would you do?

This is namely the dilemma of PALS! They ask the medical community: What are you offering us other than palliative care? Can you tell us anything encouraging other than making vague promises that in some distant future we will have an early detection of ALS, effective treatment of symptoms, or even a cure? The answer is disheartening: ALS is "a dreadful, terminal, neurodegenerative disease to which no cure has been found so far", not even a symptomatic treatment, and all that PALS can hope for now is to slow down the progression of their illness. Given this answer by the medical community, is it then surprising that PALS are keen to listen to other, more optimistic messages, regardless where they come from and how reliable they are? Who can blame them for turning to each other for help, organizing support groups to exchange news, stories, and ideas? Who can blame them if they reach even for the thinnest thread of hope, or believe in unverifiable promises? Who is to blame if they are fed up with disappointing statistics and listen instead to promising anecdotes? Who can blame them for amplifying and/or distorting rare success stories? Who can blame them even for gullibility?

Response to the Phone Game