ALS From Both Sides

Quality of Life

Breathing is not a problem if you opt for a vent and trach. Swallowing is not a nutritional problem with a feeding tube. That pretty much takes care of the actual life threatening problems of ALS!

What is left to consider are quality of life issues. Loss of speech is a hurdle that many people find very difficult to deal with emotionally. I haven't reached that point but suspect that the speech equipment available will work well for basic communication but can't give back the pleasure of a simple conversation. Anyway, loss of speech won't happen because of the trach itself (and the vent will give you the air volume for a louder voice), but because of the progression of the ALS. With Bulbar onset, speech has to be considered very temporary, as does swallowing.

As the ability to swallow worsens we face the "socially unacceptable" and therefore embarrassing problem of drooling. The good news is that it can generally be reduced to an annoyance rather than a major problem.

If all of that seems like something you could deal with, there is still the need to recognize that the ALS will continue to progress. Losing the use of your legs is a walk in the park (bad pun!) compared to losing the use of your arms. A wheelchair and lift system or Hoyer lift pretty much solve the leg problem. Arm weakness will eventually require an eye tracking system to allow you to do anything with a computer and that seems critical in giving any outlet for an active mind.

Bottom line: All of these quality of life issues are going to happen whether or not you choose a trach and vent. The difference is that they and you will go on longer if you do. Do you and your family want the extended time under those conditions.? Can you accept that your progression might be so fast that the extended time is mostly after you have lost all function? Not wasted efforts but probably not nearly the quality time you had hoped for. Can your family accept the flip side of that, that you could live for years?

Quality of life is hard to anticipate or for anyone else to determine. We have all heard that people can deal with far more than they thought they could, but that ability only stretches so far. How far? Studies have shown that evaluations of a persons quality of life by doctors and other professionals are consistently lower than the person themself rates it:

The above information was taken from "Independent Living and Quality of Life Among Persons Who Use Ventilators," an in-press book chapter by Margaret A. Nosek, Ph.D., and S. Ann Holmes, M.D. Both authors are ventilator users themselves.

Each of us has a tipping point where quality of life goes from acceptable to unbearable. Where that point lies is different for each of us. Unfortunately we can't foresee or accurately predict that point. Many people settle the issue by drawing a line in the sand early on and saying "This far and no farther”. And that is right for some people. But that line is drawn in sand and sand can shift. Time can change technology, our circumstances, our view of our disabilities. Drawing that line can give resolve and emotional peace. Drawing that line can also lock us into a promise made that makes it hard to admit that we may be considering otherwise.

The two subjects already discussed, cost and caregivers certainly play a huge part in quality of life, vent or no vent. So what does going on a ventilator add to the mix? First, what can a ventilator do for your quality of life?

Next, what are the things that a ventilator cannot do for you?

Life on a vent requires adaptability. Can you find things to occupy the hours? You will be able to be out of the house much better, but there will still be most days spent at home. A computer is a great source of entertainment, news, interaction with others if you are willing to work with one. By the time you need to decide about going on a vent, you will probably be very reliant on others for care and have a good idea of their ability, willingness and tolerance for continuing to care for you. There is nothing more demoralizing than a main caregiver who is resentful, angry, or acting the martyr. Family and friends may have already deserted you. Good riddance to the lot of them. Your spouse, partner, child, or parent will most often be your primary caregiver and their health, availability, and suitability must be considered. Regardless of their willingness, they must have help. Someone must be shown how to suction you and commit to at least a few hours a week at a scheduled time. Ideally you will have more than one person for this so that your primary caregiver can get out to get groceries, keep appointments, etc. People uncomfortable with taking care of you can commit to things like lawn mowing, emergency shopping,

A trach, vent, and feeding tube can keep you alive indefinitely. At some point (assuming pneumonia, heart attack, stroke, flu, or killer bees don't get you first) you may decide it is time to explore the great beyond. Whether or not you have a trach and vent, dying will be similar, just at a different pace. (With BiPAP or vent you can chose when, without them you have to wait until the process of dying begins naturally.) You will be given sedation to minimize anxiety and morphine to reduce the feeling of "air hunger" (polite medical term for suffocation) by dampening respiratory drive. If you aren't using BiPAP or a vent, you will continue these comfort measures for days, weeks, possibly months. Doses will be increased as needed to keep you comfortable. Eventually you will slip into unconsciousness and die in a few days.

If you have ordered that the BiPAP or vent be discontinued, the process will be faster and the unconsciousness hurried by heavier sedation and morphine. Only when it is clear that you are too out of it to experience any struggle to breathe will the BiPAP or vent be turned off. I have always said I am not afraid of dying -- I just don't want to be there when it happens! This seems like the way to accomplish that.

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