The Harsh Reality of Hospice Care
The snow from the harsh and biting winter was visible through the cracks in the floor of the decrepit, scorched trailer. The single-wide itself was smaller than an average living room.
With no furnace and a tiny wood burner stove smack dab in the middle of the trailer, an elderly couple sat. The man, burning coal on the rusty stove. The woman, pridefully showing Kris Denning around her living space.
“She was so excited because the trailer was given to her,” said Denning, the bereavement coordinator for Hospice of Eastern Idaho, who was wiping small tears from underneath her wide-brimmed glasses. “It was given to her because there’d been a fire in it. And here she is, dying.”
A mentally challenged couple living in squalor, dealing with the wife’s diagnosis of cervical cancer. Blankets were stacked on the bed of the elderly couple. She struggled to keep warm.
As they sat in the trailer without taking off their coats, Denning, along with a social worker and the former CEO of Hospice of Eastern Idaho, Ray Barnes, knew that something had to be done.
“The social worker at the time, her dad had a rental house,” said Denning. “So, thankfully, we were able to move the couple into the rental house.”
Just a small distance from the Hospice Center, Denning and Barnes’ wife decorated for the upcoming move-in of the elderly couple.
Candles, towels and a cozy, clean home. The soft-spoken, gracious woman slowly walked into the house followed by her husband and breathed, “This is like a fancy motel.”
“I so believe in hospice care and what hospice has always been in this area,” says Celeste Eld, the CEO of Hospice of Eastern Idaho. “People don’t even want to, number one, talk about dying. [People] say, “How could you work with someone that’s dying?”
Back home from the hospital late one afternoon, an elderly woman was cautiously lifted from a wheelchair onto her bed by a tall, blonde hospice nurse, Lorri Anderson.
According to the doctors, the elderly woman had but a few weeks left. Anderson, the Director of Nursing at Hospice of Eastern Idaho, turned to invite the woman’s children to the kitchen.
Gathering the woman’s medications, Anderson began teaching the children the ins and outs of when their mother would require which medications, and everything else that comes with the process of caring for a loved one who is dying.
After a few minutes of training the children, Anderson walked back into the bedroom and assisted the woman in stretching out to try and get some much needed rest.
“I can see that you’re tired, I need you to lay down now and try to go to sleep,” Anderson said to the woman.
“No I can’t, not with my kids here, I need them gone.”
Anderson left the bedroom and walked outside to tell the children that their mother requested to be alone, before walking back into the bedroom to sit and attempt to comfort a woman who had just been told that she was going to die.
After a few quiet moments, Anderson felt the sudden urge to say something that she had never felt the need to say before in her 30+ years of working as a hospice care nurse.
“I was prompted at that point to say “I love you,” said Anderson. “And I didn’t. Because this was really my first interaction.”
The woman was dead three hours later.
“It was a learning moment for me that when I am prompted, when my gut tells me to say something or do something, you do it for these people.”
Hospice care has been a touchy subject since its beginning in 1974 with the establishment of the Connecticut Hospice in New Haven. Though many would want to avoid any kind of work that involves terminal patients, hospice care workers spend every day (and sometimes every night), helping the dying through their final stages of life.
“We are not going to live forever in these bodies,” said Eld. “Hospice doesn’t hasten death. It allows families and patients to change the focus of their hope from cure, to care and comfort. We’re not euthanasia, we’re not assisted suicide. We believe that there is value in life, until the last moment of life.
The practice is now synonymous with terminal illness and as time goes on, hospice care is becoming more commonplace.
According to John Hopkins, in 2011, an estimated 1.65 million people received hospice services. Recent statistics also indicate that around 44.6 percent of all deaths in the U.S. occurred under the care of a hospice program.
Hospice workers face the burden of putting a substantial emotional toll on themselves when a patient they have deeply connected with passes away.
When it comes to self care, Denning believes that being able to step back and take time for your own mental health is important for the well being of yourself and your patients. The ability to go home at the end of the day and leave work behind is a difficult but necessary task.
“I can remember talking to one of the nurses and I said, ‘How do you do this? How do you do this patient care thing?’” said Denning. “And she said, “‘Somebody’s gotta take care of them.’”
For Denning, “It might as well be me.”