Hi, Tick Tock ... hospice does not have to be the "last resort" at all. That is a misconception. It provides many freebies, benefits and support services that are really worthwhile. I am scheduled to sign up for hospice in mid-month, and am still (somewhat) mobile, slightly self-sufficient, etc., etc.
You can go in or out of hospice as you like. You can also see doctors as you like. I will continue to be treated at a university neuro clinic, can take place in clinical trials, travel, etc. The benefits I will be getting are regular nurses visits, the support of a social worker, and basically having a lot of the hassle removed from my life. Plus wheelchair, hospital bed or other equipment I need, free supplements for my feeding tube (now I pay a co-pay) and many others. I can get these things through other sources, but with paperwork, delays and a lot of effort on my part. It will simplify my life in a major way, and help my caregivers, too.
I think this is something that many people put off investigating until the last minute, but many people are on hospice support for months or even years. The famous columnist Art Buchwald was in hospice for over a year, still writing his column, until he got bored and signed himself out. Usually you sign up for six months, and your doctor will renew it for six months at a time.
What it means basically is that you will receive palliative care ... they will make you as comfortable and pain-free as possible. Hospice will not try to cure your condition or prolong your life with intrusive means. Since
ALS is incurable, that's not a biggie.
As to your friend ... it's impossible to say what stage he/she's at. Calling in hospice services doesn't mean the person has necessarily declined. It may be to help the caregiver, it may be to help the patient. And it's very difficult to pinpoint a person's "progression" with
ALS. There are many side effects that may jeopardize their life ... pneumonia, choking, etc. So if you're not getting firm answers, it's probably because there are none.
Just keep using your time with your friend "wisely." I don't know how knowing how close they are to the end would change that. Show them your love and support and concern.
hospice 
