Hospice is a wonderful resource in the vast majority of end-of-life situations. They comfort and counsel, provide pain relief, and offer the patient and family both physical and psychosocial care. But every now and again, a patient slips through the cracks in the system and doesn't get the care they need when they need it most. Here's what happened when hospice failed my family.
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"Do not go gently into that good night...Rage, rage against the dying of the light."
That was my husband's philosophy after being diagnosed with pancreatic cancer in the summer of 2013. He'd fought bravely for two and a half years, and most of that time had been good. But the drugs his oncologist gave him had failed, and there were no other options than to go on strong chemotherapy, which the doctor admitted would only prolong his life for a few months and make him miserable in the meantime.
Faced with these horrible circumstances, Will and I broached the subject of hospice. Having worked closely with the various agencies in our area, I was quite impressed with their services and had learned a lot about end-of-life care. It was awful to think of Will as needing hospice, but his prognosis was so grim that it seemed entirely appropriate. He agreed readily, and so began his final odyssey.
It wasn't long before we discovered how wonderful our chosen hospice agency was. Will had a nurse and massage therapist, both of whom came once a week to check up on him and make sure we had adequate supplies. He also was given a comfort pack filled with drugs he might need for nausea, vomiting, pain and agitation. They didn't bring any morphine or Dilaudid because he wasn't close to dying at the time and was relatively comfortable, but promised they would when he needed it. So I never gave it a second thought.
Months passed, and although it was obvious that he was failing, Will remained pain-free...until that night.
It came on all of a sudden. He'd been having one of his bad days, but this was unlike anything he'd ever experienced before---a tearing, stabbing pain in his abdomen along with severe nausea and vomiting. My son, an LPN, grabbed the pain meds and antiemetics, and we gave him everything we had, to no avail. We called hospice so they could bring him the heavy-duty pain meds; unfortunately Will's nurse wasn't on call, so we ended up with another nurse who was clearly uninterested in driving the 25 miles to our home to deliver them. She warned us against calling 911 because he would be "kicked off hospice", but offered nothing of substance.
Meanwhile, my husband was crying in pain. This was a man who once broke an ankle as we were moving house and continued without stopping, never complaining, so we knew he was in desperate straits. By this time he was vomiting blood in large amounts and going into shock. We called hospice again, and this time the nurse advised us to admit him to the hospice house. It would be another two hours before he was transported, all without relief from the pain.
"Why do I have to suffer like this?" he cried out repeatedly, breaking my heart and making me feel helpless. I didn't have an answer.
At long last, the transport van arrived and we went to the hospice facility where nurses quickly prepared Versed and Dilaudid injections. It was still another hour or so until he got adequate relief, but the compassionate care he was given there stood in stark contrast with that of the on-call nurse. He passed away in the early morning hours, and thank God he was comfortable. But what he went through because of the unnecessary delay in pain relief is something that will haunt me the rest of my days.
After all was said and done, I reported these events to the grief counselor, who is still seeing me every few weeks to help me process what happened. Of course I will never know if or how that nurse was dealt with, but I felt better knowing that someone knew about it and had brought it to the attention of people who could actually do something to make sure it never happens again.
I don't blame the hospice agency; I blame the individual nurse. His own nurse would never have let Will suffer like that, and when his massage therapist heard about it she was appalled. They both came to his funeral and sent sympathy cards, and they are the ones I'll remember with love forever.
Yes, hospice is a wonderful thing, and I'm grateful for all the help my husband received prior to that last night of his life. But when hospice goes wrong, it goes terribly wrong, leaving survivors to deal not only with their loved one's death, but the awful feeling that they didn't do everything that could be done.
