Talking About #EOL Makes It Easier for Those Who are Dying and Those Who Love Them

“None of the families had ever talked with the parent about the parent’s perspective on dialysis and when to stop,” Hammes said. “Families were going to have to live with the question of ‘did I do the right thing for my mom or father?’ and they would never know the answer.” These patients had not gotten sick suddenly. They had long, progressive illnesses and had been in care at Gundersen for years — and no one had thought to begin that conversation. The lack of communication is often catastrophic for patients who do not want heroic measures. When family members don’t know a relative’s wishes, they often feel they must show their love by asking that everything be done. Anything short of the maximum seems like abandonment or betrayal. And that makes the choice also terrible for families. “I witnessed frequent and repeated moral distress that health professionals and families had making decisions when there were no good decisions,” Hammes said. “It was almost exclusively based on the fact that we didn’t know what the patient wanted.” Research shows that families who are unaware of a patient’s wishes suffer much more stress, anxiety and depression than those who are aware. “It was a difference of night and day,” said Hammes. “The difference it makes in people’s lives is so clear and big that not to do it seems cruel.” Hammes started a program to begin end-of-life conversations with dialysis patients and their families. Within two years, he said, almost all the families of dialysis patients knew their loved one’s wishes. In 1991, Gundersen set up a task force to spread the program throughout La Crosse, which included the Franciscan Hospital and the Skemp Clinic, alongside the Gundersen Lutheran Medical Foundation’s hospital and clinic. All four collaborated, along with nursing homes, hospices and smaller hospitals. The goal was not simply to have people fill out an advance directive and put it in their medical records. A written directive alone, members of the task force reasoned, could do more harm than good if it came as a surprise to the family, said Hammes. “We don’t think mom understood what she signed,” was a common response. Just as important as the legal document was a conversation with the patient and her family. The patient would need to understand the options — for example, that “do everything necessary to keep me alive” can mean intubation and cardiopulmonary resuscitation, which on a frail elderly person can break her ribs and sternum; those who survive it often do so with abdominal bleeding and neurological damage. And the family had to agree to support the patient’s decisions.

Talking Early About How Life Should End, NY Times