My husband's story
My husband, age 58, was recently hospitalized out of home community with an acute life-threatening condition that he succumbed to after 5 weeks of complex and invasive treatment.
He was initially cared for on a unit where there was essentially one-to-one nursing as his condition required constant monitoring and intervention by both nursing staff and physicians.
He was transferred to a "step down" unit placed at the end of a long hall and left on his own to await the nursing staff and physicians' visits. His condition was not initially deemed "palliative"; however after 3 weeks it became apparent that he would either not survive or would be chronically disabled requiring constant care and access to life-saving treatments (dialysis). In spite of this awareness of his condition, he remained on the step-down unit. While the conversations with physicians broached the subject of "palliative care" and transfer back to home hospital for comfort measures, palliative services were not offered to him or to his family, and he remained alone.
I live 2 hours away from the Hospital where he was admitted and remained there staying in hotel rooms visiting with him daily with our 2 daughters, both of whom had travelled from communities hundreds of miles away. With each visit we found him confused, disoriented, enduring pain and discomfort, and at risk of harming himself by pulling out leads, IVs, monitors etc. We did on occasion have to return to home base over 100 miles away, and relied heavily on his care providers to ensure his safety, dignity, and overall care needs were attended to during our brief absences.
He was not deemed to be in need of closer supervision in spite of our efforts to have him transferred back to the initial unit where the staff-patient ratio was 1 to 1.
We were not successful in having him return to home hospital to be treated palliatively and he died alone. A palliative visitation program would have provided him with the presence of a caring individual when his family could not be with him, and perhaps he would not have been alone at the time of his death had his care team recognized the need for "end of life" care.
