A strong power of attorney is indeed powerful for a condition like Alzheimer’s. But it may come as a surprise to learn that a good “basic” advance-directive document needs considerable supplementation when it comes to a dreadful illness like ALS – Amyotrophic Lateral Sclerosis, or Lou Gehrig’s disease.
Ordinarily, if a patient becomes unable to communicate their health-care choices, a good advance directive gives the patient’s agent a lot of power to shape the health-care plan as the patient would want: The power to keep the patient at home if possible; or, if not, to select a long-term health-care facility; to authorize pain-relieving drugs; to accept or decline surgery as the patient would wish; and to accept or reject blood transfusions, dialysis, antibiotics, cardiopulmonary resuscitation, breathing and feeding tubes – and possibly to decide when all that treatment should stop and the patient be allowed to die a natural death.
Many, if not most or all, of us would decline mechanical devices like breathing and feeding tubes, if that aggressive treatment would merely prolong the dying process. Yet people suffering with ALS might benefit from temporary use of precisely those treatments, as long as the treatment is accompanied by education and support in a conservative treatment plan specifically crafted for their condition.
ALS patients must be supported by care that is centered on creating more autonomy and the ability to communicate. There are conservative treatments available to assist in the breathing and coughing problems that ALS patients need assistance with, to avoid lung complications and preserve quality of life for as long as possible. These conservative treatments should be used before the drastic choice of tracheotomy, which could condemn the patient to institutionalization for the rest of that person’s life. With less-drastic treatment, the patient might remain at home and preserve a measure of familiar comfort and autonomy.
Likewise, education must be offered to create the ability to communicate by means other than speech. This education, if done timely while the patient still has some ability to move, could ensure that he or she remains communicative even when speech is eventually lost. This would avoid the terribly lonely, frightening, and despair-inducing “locked-in” condition, in which the patient retains all his or her cognitive faculties but is helpless to communicate at all.
A wonderfully supportive resource is a Caregiver’s Guide provided by the Muscular Dystrophy Association, available here.
It’s loaded with information about ALS symptoms and side-symptoms; respiratory, nutritional, and emotional issues; simple solutions to build the communication skills crucial to avoiding “locking in”; financial and legal issues; end-of-life issues; and many other educational resources.
For a brief video about conservative therapies to assist with breathing and coughing, published by the Rutgers New Jersey Medical School, see here.
A document that is custom-drafted for ALS patients should also specify that the patient must be consulted every six months to review the patient’s condition and how it may affect the patient’s health-care choices. The patient’s wishes can change, depending on the person’s progress.
Knowledge is power. And power of attorney documents for ALS patients should ideally reflect the education that is so important to preserve those peoples’ quality of life for as long as possible.