For those readers following the black cloud over our family's head this year, you know that my wife's brother and then my sister passed away less than a month apart earlier this year. On Aug. 23, so did my father-in-law, Lou. He was hospitalized July 3 and never made it home. While 51 days of his hospital experience were miserable, the last day of his life was peaceful and dignified.
His last day was spent in hospice, administered in the hospital through a separate company not affiliated with the hospital. The culture difference was glaring. And hospice workers were truly caring.
First, they respected the family's wishes. I married into a large Irish family and there were probably 20 of us around his bed as they withdrew support. Even a cousin from Northern Ireland, a priest, came over and administered last rites. Crowd control was not an issue. The hospice nurse simply let us have our space while she explained necessary information in a respectful manner.
As we moved my father-in-law and the gang into a private room and out of the intensive care unit, the hospice aide respectfully stayed in the shadows. As one hour led to two, it was clear that my father-in-law was waiting for something before he left us. The hospice nurse suggested that he might not pass with that many people around, especially with his devoted wife of 64 years in the room. We took that as a sign to start taking shifts, and my wife, her sister, her niece and I kept vigil as others went home to get something to eat.
Obviously, hospice knows a thing or two about dying because less than an hour after most people left, Lou passed away. It was peaceful--I've never been present when someone died. The aide came in and once the death was verified, she took the most loving care of this man who she did not know. She shaved him and bathed him. But it is hard to describe the love she showed while doing it. I watched, probably more so than my grieving wife and her sister.
See, but for sporadic episodes, Lou's hospital care was nothing like his care at death. Sure, there were some caring staff. And there were others in and out just doing their job. But the experience was more than staff. The environment reflected it. He spent 51 days in a room that my wife and her sisters felt compelled to clean. He stared at a ceiling vent that was dirty, which my sister-in-law eventually cleaned. But not for his family advocating for his care, he might have died months before.
The biggest observation for me was the complete breakdown in communication. No one seemed to know what the others were doing. That was reflected in his two readmissions to the same hospital prior to the last and final visit. It persisted to the last day when the renal doctor came in to say they would be trying dialysis again, even while the family's wishes of withdrawing support were documented days before.
I am not sure what the answers are here. I do know that going to the hospital close to you is not always the best choice. My in-laws chose it because it was just two miles from their Blue Bell, Pennsylvania apartment. They went there despite numerous lapses in care. A lesson to caregivers: Do your homework for your older parents, show them the facts and politely but firmly suggest they seek care at a high-quality hospital.
I also know that transparency is a good thing and sometimes HCAHPS don't lie. This particular hospital, thinking that it was doing a good thing by posting their satisfaction scores, also reinforced that the score did reflect the care. All of the scores I observed were in the 50s. Not comforting.
But maybe the biggest takeaway is for hospitals to take a lesson from the hospice aide who shaved and bathed my father-in-law after he died. The dignity, the love and the respect are something we could all emulate. And to think we still battle for hospice's rightful place at the healthcare table.
Anthony Cirillo, is president of Fast Forward Consulting, which specializes in experience management and strategic marketing for healthcare facilities. He also is the expert guide in Assisted Living for About.com.