The decision to go to a ventilator with a trach has to include consideration of more than just the respiratory numbers. How fast is his overall
weakness/paralysis spreading and is he in pain because of it? That is a huge factor! Is he adaptable enough to find enjoyable things to do as he loses
strength? Is he able to mentally tolerate his condition or has anger or depression taken over? Is he willing to at least try the medications and
equipment suggested to him? Does he understand that a ventilator doesn't require being homebound much less being confined to bed? Is he aware that
if the cost of a ventilator and supplies is a hardship, it can be reduced or eliminated by applying for financial assistance from the provider? Is
he aware that being on a ventilator doesn't medically or legally require any care hours from licensed nurses if family and friends are available and
willing to help? That home care doesn't require all the expensive sterile supplies used in the hospital? That opting for a ventilator and trach is a
reversible decision whenever the person decides it is not enough to make continued life desirable and that removing the vent and dying is done with
medications to make death peaceful?
It comes down to being his decision but it should be a decision based on good information, not assumptions about living with a ventilator.
Diane H.
If you are evaluating the pro's and con's of going on a ventilator when the time comes, there
are big questions you need answers to. How will affect my quality of life and that of my family?
What help will I need at home? What will it cost for the equipment? If living at home becomes a
problem, how far is a nursing home that accepts ventilator patients? It is hard to answer these
questions because insurance coverage varies, the availability and willingness of family and
friends to help varies, and each individual's adaptability to advancing ALS is different.
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!
A vent is not for everyone. Those with rapid progression and loss of nearly all movement will
face being locked in (mind is working but with no way to communicate even yes/no) fairly soon. In
all of the United States, a patient can request to be taken off the vent and allowed to die at
any time, and the process will be done under heavy sedation and other meds for a peaceful death.
Learn about your country's laws regarding your right to discontinue treatment, including a
ventilator, before deciding.
The hard part is deciding "when". If the patient waits too long, he or she can be locked in
with no way to say turn off the vent. Patients can live for years in this state. Most people
consider that an extremely undesirable way to live. Family is stressed terribly. No one should go
on a vent without deciding when they want the vent turned off and telling their family and
doctors that decision. Giving medical power of attorney to someone they believe will carry out
that decision is critical. Often the best person for that job is not an emotionally torn family
member.
Going to a vent is not an easy decision. If you have read "Safe Harbor" you know that I have
found vent life to be positive and I tend to be pro-vent. It is horrifying to me that only 5% of
ALS patients in the United States opt for a vent while 50% of ALS patients in Japan do. But that
is a topic about our pathetically bad health care system...
I definitely recognize that I have had all the breaks in the situation; a husband who was
able to take early retirement to care for me, supportive family even though only one family
member lives here and the rest are 800+ miles away. A couple of friends have pitched in to help
so we don't have the expense of paid care. I am a couch potato by nature and can keep occupied
and happy. Most of all, my ALS has been very slowly (but consistently) progressive making the
decision to vent worthwhile. In spite of all that, I have tried to present the information here
in as unbiased way as I can. I hope you find the information useful as you try to decide what to
do.
