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When noninvasive ventilation no longer provides enough breathing support, invasive mechanical ventilation will be discussed as a way to extend your life. This requires tracheostomy surgery, which creates a circular hole in your windpipe at the base of your neck where the ventilator tube will connect. After that, the portable ventilator will breathe for you.
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What would this mean for me?
Going on invasive mechanical ventilation means that you will need to be connected to your ventilator full-time and will need 24/7 care. You will receive nutrition through a feeding tube and will need to communicate through a speech-generating device.
What type of care would I need?
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Once you are dependent on a ventilator, you will need 24/7 care. If you hire caregivers, they must be skilled, vent-trained professionals. This type of care is expensive, and is not covered by Medicare. Medicaid and some private insurance plans may pay for some level of care.
Family members can be trained to care for you. They will need to be fully trained before you return home from the hospital, which can take two to four weeks. Once at home, family caregivers will need to care for the trach site, maintain supplies, and suction secretions from the airway multiple times an hour. |
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How should I make this decision?
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Getting a tracheotomy is a very personal decision. Talk with your neurologist, ALS clinic team, and a representative from your local ALS organization about the advantages and disadvantages of mechanical ventilation. Visit our tracheotomy and ventilation page to learn more about the pros, cons, and considerations.
Talking about this with your loved ones is not easy, but it is extremely important. You may want to ask the social worker or nurse at your ALS clinic to facilitate the conversation, answer questions, and educate everyone on the realities of each option. Though it is ultimately your decision, consider and discuss the impact it will have on everyone involved. Your loved ones may have strong feelings and differing opinions, and may even disagree with what you want. Try to explain your thinking and wishes as clearly as possible.
Once you make your decision, be sure to fill out advance directives to make your wishes very clear to your loved ones and medical professionals. This will provide the gift of clarity for everyone and help ensure that your wishes are followed. |
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