The "Ten Commandments" for Optimal Motor Neuron Disease Patient Care
- "Leave no stone unturned" - The diagnosis must be made by experts and confirmed independently, since the diagnosis is entirely clinical and objective laboratory testing is lacking. The ALS type of MND is usually fatal and each patient deserves expert confirmation.
- "Hope springs eternal" - Even if no other diagnosis seems likely, hope of a less serious outcome must be preserved; ALS progression can stop or "burn out" and the other types of MND are generally less malignant. Do not crush all hope.
- "Understanding a suffering shared is a suffering halved" - This is a family disease. The whole family should be involved as soon as the diagnosis is confirmed, because much of the burden will be on them as well as on the actual sufferer. We encourage the family to be present at all examinations, tests, and research procedures, etc.
- "Go out in good spirit with flags flying and whistle wet" - Ameliorate symptoms with early intervention. Many MND symptoms can be reduced by the use of a variety of simple treatments, which should be utilized to ease the effects of progression. To do otherwise is a disservice and indignity. Avoid superimposing manageable problems on an already difficult situation. Should worse come to worst and a terminal stage be reached, the generous use of powerful narcotics has absolutely no risk of addiction and guarantees comfort in the last days.
- "Never let the patient feel abandoned and alone" - Participation as early as possible in experimental treatments confirms realistically that the sufferer is not alone and abandoned. World-class researchers are devoting themselves to conquering this disease.
- "Be it ever so humble, there is no place like home" - In most circumstances home care is best! Brief hospital admissions for more significant treatments may be appropriate later in the illness. However, again, we encourage family attendance, including at least one family member, to be present during the night.
- "Keep the patient involved, informed and updated" - An informed patient is the most effective patient. Keeping everyone as fully informed as possible about what may be next respects their intelligence and integrity. Their decision about what is best for them should always be respected. The difficult decisions about life support or assistance should be discussed openly early, without prejudice and be made by the patient before they are needed. Refusal by the patient to participate in research or life support, or a wish to self-administer unlikely treatments or alternative health methods, such as vitamins, acupuncture, meditation, etc. should not be derided by the attendant health professionals.
- "Let the patient be in charge" - Never forget that the patient is in charge throughout the illness; physicians, nurses, physical therapists and other health care attendants are serving only to aid the patient and to help the family manage as well as possible.
- "Anticipate the added financial burden" - Equal attention must be given to the family finances and maintenance of the home, especially when the MND victim has been the wage earner or the principal in the family.
- "Encourage positive thinking to heighten morale" - Maintain patient and family morale with respect and support during the long haul. This is perhaps the overriding, and final consideration in MND management. Everything including medical and nursing care invariably goes from bad to worse when morale is low, and likewise good morale can compensate for many seemingly dire problems.
by Forbes H. Norris, M.D. 1928-1993
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