On Friday my 44 year old daughter’s referred palliative care nurse made their first visit. Then a 2nd nurse visited yesterday.
They reported to the service’s doctor that my daughter “was suffering” and should be on hospice - and to stop dialysis. Then I was called and informed that the service would not provide any services until that decision was made.
All I had asked for was to make her more comfortable because the skilled nursing facility wasn’t keeping up with her pain and extreme itching of uremic pruritis.
She is lucid, has no intention of stopping dialysis - “Hold On” is tattooed on her arm.
She is a double lung transplant survivor and has a failed kidney transplant. She receives bedside dialysis five times a week, for as long as the nurses can keep her blood pressure at a safe level.
She’s been hospitalized twice since April of this year, for infections that may have started with her stage 4 sacral wound. This wound hasn’t fully healed for two years.
On top of everything, she suffered a stroke a few days after the transplants. So she has been bed-bound since then.
But she lives each day with hope, and as her POA, I cannot imagine approving that the dialysis be stopped.
Why can’t they just give her the comfort care I requested? It is covered by her insurance.
I don’t know if I can get a 2nd opinion from a different provider. I’m so sad.