Many people have had an elderly relative or a friend who has been cared for in a hospice setting or received hospice care in the home. But rarely do we read of someone who has had a tragic experience with hospice. So what a shock it was when reports came my way that there are a growing number of reported cases of patient abuse being carried out by hospice-related health care providers.
I was stunned, but also angry. When someone is so very vulnerable because of a devastating illness, and death is near, there is no excuse for the kind of callous treatment (or lack of treatment altogether) that has come to my attention.
Here is what one young woman reported to the Hospice Patients Alliance:
“My father was a hospice patient and I feel like they killed him with morphine. He was saying he couldn't breathe, so my mother called the hospice nurse. She came out and said to give him morphine every two hours and that if he started getting really bad, to give it to him every fifteen minutes. Later that night he raised his arm up and my aunt thought he was getting upset so she called the hospice nurse and she said to start giving it to him every fifteen minutes and so we did. I really don't think he needed it every fifteen because he wasn't in pain. He just couldn't breathe very good and morphine slows your breathing down. I wish I knew who I could talk to about this and ask them if they think that morphine is what killed my father.”
And then, I read this tragic story:
“My father just died under hospice care … his death was unnecessary. He was still eating well, speaking, joking … however, my daily caregivers and myself noticed he had a low-grade fever … which we reported to the hospice nurse. She told us it was arthritis and to give him vitamin C… Unfortunately, he had a urinary tract infection >(UTI) that went untreated until he was in extensive pain on Thanksgiving Day. His pain was so intense his blood pressure went sky high and he had a stroke. We are meanwhile calling hospice for help with his pain, fever etc. Even when they arrived they did not treat his UTI or help with his fever or pain, even when we showed them a distended stomach, blood in urine and fever. Finally the next afternoon — another 24 hours later — he was given a catheter. But his pain had been so intense, and there had been no treatment for so long, he had a seizure and went into a coma. Pain meds were administered and he suffered another three days and nights before dying.”
Too often there are tragedies like these two taking place within trusted care-giving organizations like hospice, and the public is never informed. Though there is a clear failure to communicate these atrocities to the public, that is no excuse for our maintaining a false sense of confidence in hospice-related care.
There should be a way for every family to determine whether or not the facility they have in mind is staffed by people committed to the dignity of the human person and his care.
It never occurred to me that there was a need for such an organization as the Hospice Patients Alliance, but now I realize that we should be thankful that it exists. We should take advantage of their resources so that one day we do not experience the devastation of knowing that a loved one died prematurely or needlessly due to egregious errors in health care. To learn more about Hospice Patients Alliance, visit their website
One final thought. When you think about hospice, remember what Dame Cicely Saunders, foundress of the hospice movement once said: “Hospice care is there to make it possible for people who are dying to live fully until they die.”
(This article appeared in the Washington Dispatch and appears courtesy of the American Life League.)
