I’m new to posting here but discovered this site last year and wanted to share the positive experience my husband and I had with palliative care. My impression is that it’s underutilized and not well understood. My husband had end stage renal disease and was on hemodialysis when he agreed to an evaluation last fall (I had been bringing it up for a while).
As some of you know, palliative care is for people who have serious or complicated medical issues such as heart failure, cancer, Parkinson’s, COPD. There is no required life expectancy and no treatment limitations. My husband was at a point where he did not want to be hospitalized or pursue aggressive treatment beyond dialysis and our focus was on symptom management and decreasing doctor’s visits.
His nurse practitioner came to the home every three to four weeks and he received at least an hour of individual attention. His pain was better controlled than it had been for many years along with G.I. issues, and our quality of life improved significantly. I was his only caregiver and the relief I felt to have a true medical partner was huge.
When the time came, the transition to hospice was so much easier (I may share more details if someone here with ESRD ever has questions). I had the advantage of decades working in a medical field and understanding how hospice care works. I wish I had been more familiar with palliative care when I was still working, because I would have brought it up to a lot of my home care patients. Anyway, I’ve been visiting this site since last year and wanted to share our experience.
I so agree that this new specialty is not well understood.
Five years ago when my brother was ill a MASSIVE huge teaching hospital like Desert Regional in Palm Springs didn't even HAVE a palliative care specialty. No idea if they do or not now. One resident I talked to told me she was so disappointed as this was going to be her specialty.
I am dealing now, at 81, with my second bout of breast cancer (having been 35 years cancer free from the first) and have already got such GREAT advice and counseling. I have made decisions just how to treat and not treat (no nodes removed, no chemo and no radiation) all of the "what ifs" and the plan will all be for quality of life ongoing, for support, for pain relief. Live while I live, hoping for no spread, but when and if, then palliative and hospice and MAiD (medical aid in dying). I feel, as an old retired RN so comforted in knowing, in feeling pain and distress will be managed. I don't fear death at all, but the medical machine? I am pretty thoroughly PTSD'd out by it. Ha ha.
Thanks for writing this for us.
My mom had Parkinson’s disease. She died in an end of life hospice care home at age 95.
Wishing peace for you and your husband. Thank you for sharing your experiences.