off hospice to treat her in the hospital. She did not survive. She was intubated and unable to communicate. After a week-long fight, my brother and I made the gut-wrenching choice to extubate her. Watching my mother suffer, and choosing to extubate her, was the worst time of my life. Looking back, I would not have taken her off hospice and would have let her die at home with the help of drugs to keep her comfortable. We did not know my mother’ s wishes and so had to guess as to what she wanted. I would advise everyone to have that difficult conversation so that when the time comes, you know you are honoring your loved one’ s wishes.
Third, hospice provided us with many services, including bi-weekly bath aides, massage therapists, clergy visits( if you want), and a few hours of respite per week.
And last, I agree with Steve Garcias that it depends on the hospice provider as to the quality of care. Obviously, some are better than others, so it is important to interview more than one and to check references or reviews.
From Fran Gardner
Unfortunately, we had a negative experience seeking palliative service. To my surprise, none of the hospices in our area offered palliative last year. Al was being discharged from rehab and was denied hospice because it was important to him to continue therapy. So he was discharged to home health.
End of Life Hospice: We had planned that Al pass at home early on, but as the end unfolded, he was an inpatient in the hospital and was transferred to inpatient hospice. It was a positive experience, where he had 24 / 7 nursing and physician care, was comfortable, and was pain-free. This gave us the opportunity to focus on our goodbyes.
71
There are some wonderful hospice facilities that are family supportive. Depending on individual circumstances, a facility may be a better option than home hospice.( I am thinking of the group of spouses that may need to continue working, or PSP patients who don’ t have the family support at home).