A hospice nurse who uses her experience to educate and inform people about death and dying has advice that might be difficult to hear: stop trying to keep your loved ones alive at all costs.
When someone you love is critically ill, decisions about medical care can be tough. Despite impressive advancements, medicine isn’t an exact science, and families and medical teams must work together to determine what course of action offers the best chance of the desired outcome.
Those decisions become tougher when critical illness becomes terminal illness. Naturally, no one wants their loved one to die. But as Hospice Nurse Julie explains, some outcomes are worse than death.
Drawing on experience as an ICU nurse
Julie explains that she spent half of her 20 years as a nurse working in an Intensive Care Unit (ICU). That experience led her to hospice care because she saw what can happen when people refuse to deal with the possibility of death.
“An ICU is a place where we keep people alive at all costs, or at least we try to,” she shares. “People who are super, super sick, and we do all these things medically to try to keep them alive. Now, granted, there were many times when we did wonderful things, and people did live on, which is amazing. But as the years went on, I started to see over and over and over again that we also had the group of people that we were keeping alive at all costs. And to me, it was far more brutal than allowing them to naturally die.”
She gave an example of a man who came in for a Whipple procedure for a pancreatic cancer diagnosis. It was a major surgery at the time, but if successful, it could add another five years to his life.
“I’ve had many Whipple patients who are in and out of the ICU within five days, and they do great,” she said. “But this particular patient, he did great, and he went to the floor (which means you leave the ICU and you go to the floor after 5 days of being in the ICU). But on the floor, he coded.”
They revived him, but things kept going downhill from there. She went into some detail about the medications and treatments they implemented to keep him alive, and how they led to his fingers and toes starting to die. Sooner or later, they would need to be amputated. Complications like this continued for six months.
“This person likely was going to die,” she said. “They were not getting better. It had been six months. He had terminal cancer already. He had necrotic toes and feet. He was still on a breathing machine. We weren’t sure of his neurological status because he had coded so many times, and we were still keeping him alive.”
The quality of life and ‘life goals’ conversation every family needs to have
Julie said this man’s loved ones had never talked about allowing him to die or what it meant for his quality of life to keep him alive at all costs. Though she had been a nurse for only two years, she felt compelled to prompt that necessary conversation.
“During rounds, I spoke up and said, ‘I think we should have a family meeting about life goals.’ And everyone knew what I meant when I said that, even though I was scared and I didn’t really know what I meant. But I just knew we needed a family meeting to talk honestly with the family. And everyone agreed, ‘Yes, yes, yes, yes, yes.’ It was scheduled for that day.”
Even if the man ended up recovering enough to leave the ICU, what was his quality of life going to be at home? His body had been through the wringer. The surgery may have bought him some time, but at what cost? Is more time worth it if it means more suffering?
“By the end of my shift, after having a family meeting and being honest with the patient’s family, the family decided to turn off all machines and allow the patient to die here in the ICU,” Julie shares. “And by the end of my shift, the patient had died peacefully in bed in the ICU.”
Just because it’s a hard choice doesn’t mean it’s not the right choice
Julie says she went to her car and cried after that shift, knowing that her intervention led to someone’s death. She kept asking herself if she’d done the right thing.
“Years have passed now, and I know I did do the right thing,” she says. “And that did actually change the trajectory of my career, and it changed the way I viewed life and death. I have countless examples of patients like that from the ICU. And this is why I tell you death is not the worst possible outcome. Trying to keep someone alive at all costs, when you don’t fully understand what’s happening with their medical care, can lead to so much suffering. Undue suffering for you and for the family member in that hospital bed.”
People in the comments who had been through such experiences themselves concurred:
“It was a nurse like you who was honest with me about my husband when he had an aneurysm that basically blew up his brain stem. He was in a coma, and she told me that she was in the same position as me once. The hospital wanted to keep her husband alive, but even if he lived, he would have no quality of life. She didn’t want to give up hope, so they transferred him to another long-term facility; she said it was the biggest mistake she ever made. I knew my husband would never want to be alive like that, and she helped me feel okay about letting him go. I will always be grateful.”
“Julie, my mom had her seventh stroke, when I got to the hospital she was unconscious. The doctor asked if we wanted to put her on life saving machines. I asked him how bad was she damaged. He said ‘she will likely just stare at a clock ticking the rest of her life.’ We (my sister and I ) made the most heartbreaking decision of our lives to let her go naturally. She passed away three days later. I loved her so much.”
“I was my older brother’s health advocate in 2016. His heart was loaded with blockages, his kidneys were shot due to being diabetic. He had sepsis. He was on life support. The doctors explained to us that he could be kept alive for a long time like that. I chose to let him go. He wouldn’t want to live that way. He went to a hospice floor and passed the next morning. I know I did the right thing.”
“I have been a nurse for 36 years. Hospice nurse for almost 25 years. I have explained to my hospice patients and their families that there are worse things than death. Keep up the great work with your channel. You are educating so many people about dying and death.”
These decisions are never easy, but remembering that death is not the worst outcome may help some families let their suffering loved ones go.
You can follow Hospice Nurse Julie on YouTube for more helpful information about death and dying.
