Hi, this is my first post although I have been reading this forum for several months now. I will post an introduction later, but I wanted to go ahead and comment on this topic.
There are a number of factors to consider in terms of mechanical ventilation, and I think that it is a personal decision that everyone must make for him/herself. Others should respect each person's decision, even though each of us might choose something else for ourselves.
My mother's disease has progressed very rapidly--she was active last summer, but is now wheelchair-bound. When we went to an ALS clinic for diagnosis, we discovered that her FVC was around 50%, but she didn't feel like she was struggling to breathe.
That all changed a couple of weeks ago when she developed bronchitis and could barely breathe. She was admitted to the hospital for treatment, and she ended up on a vent after her CO2 levels were so high that she almost died. She had been there overnight for observation with a BiPap machine, and so the vent was an emergency procedure for which I was not consulted. I received a call to be informed about the vent, and I was told that we would need to make a decision about whether or not she wanteed a trach. Then the pulmonologist called (this was not a doctor we had met before) to discuss the options with me. Without the trach, she would essentially die because the intubation is a temporary measure, and the doctor felt that it would be risky to keep her on it for more than a couple of weeks. He told me that he would respect our decision and that he was prepared to help us either way. He presented the facts about the trach and did not bias us one way or the other, but he did emphasize that she could adapt to the trach and live a good life if that's what she wanted to do. He still stressed that the decision was up to her.
She opted for the trach, and now she is doing better. She will be on the trach for life most likely, but she is headed to a facility that will offer rehabilitation to help her speak and eat again. She does not have upper motor neuron involvement yet, so her speech and swallowing are excellent. Also, she has some upper body strength still. The pulmonologist told us after the trach that he was glad she made that decision because she is so alert and cognizant, plus he thinks she will be able to enjoy life, in spite of the major adaptations that we will have to make.
I wanted to contribute to this discussion because I have indeed encountered a supportive pulmonologist who has been so helpful and encouraging. Yes, this is a major life change, but we feel that she can still have a good quality of life. There are portable vents that allow a person to travel outside of the home, so it's not like she will be "locked in" at home.
My own thoughts about what I would do in a similar situation have changed. I really wanted her to get the trach because I am not ready for her to die yet. She feels the same way. I would have made the same choice if I had been in her exact situation. Yes, this has all happened really fast, but that's actually part of why she opted for the trach. She's still fighting (and kicking, if only figuratively). So my new opinion is that the decision about whether or not to opt for the trach is a rather nuanced and subjective decision. You might have one opinion based on a potential set of circumstances but another opinion if the disease progresses differently. I think that if she were not able to swallow and move her arms, she might have made a different decision, but I do not know for sure.
My advice, for what it's worth, is to consider different options and don't rule out the trach completely. Your decision will most likely be based on a specific event, like a respiratory illness, and it might come sooner than you anticipate. Picture yourself living a day and a week with the trach. Imagine what you would do during that time. Would you watch television, read, listen to music, sit outdoors, or what? Imagine how you might feel as you are doing these activities, and also imagine who is around you. Focus on how your life itself would be, rather than just the ventilator aspect of it. You might still decide that you don't want to get a trach, and that is fine. But be prepared for different scenarios because it might be an "If...then..." situation, with different answers based on what exactly precedes the respiratory failure.
And one final thing: While my mother has been concerned about being a "burden," I have told her over and over again that she will never be a burden to me. I want her in my life as long as she wants to be here, and I am making an active choice to help take care of her. While this isn't how I had imagined my life, neither is the rest of my life, even before she got sick. Ask anyone who lived in New Orleans before Hurricane Katrina, and they will tell you the same thing. We never know what is going to happen and what/who will impact our lives, so to me this is just "one more" life change. Yes, it will take a lot of work and planning, but I am fully committed to doing whatever she needs. We are making sure that I take time for myself as well so that I don't experience burn-out, but for now I am cherishing every moment that I get to spend with a person who has done so much for me. I have told her that we are in this together, and I know that I will grow through the experience. So rather than a burden, I see this as a gift--the gift of time with my mother, and the gift of learning how to be a stronger person.
Good luck to everyone who has to make this decision. It certainly isn't easy, and I respect everyone's personal choice. I just hope that no one gives up simply because of the worry about financial or other burdens. There are plenty of resources out there to help you if you choose ventilation, and I imagine that your family wants to be there for you every step of the way.
P.S. Sorry this is so long!
