Number of hospice patients in Minnesota increases as doctors accept such alternative care
ST. PAUL -- Bert McKasy has not reached the end, but he can see it from here.
He is dying of colon cancer and has only a few more months to live. Yet he feels good, looks good and is exactly where he wants to be — in his Mendota Heights home with his hospice nurse beside him.
They met after McKasy decided, at 3 a.m. one night last August, that three years of chemotherapy was enough.
“I wanted nature to take its course,” he said.
For McKasy and a growing number of Minnesotans, hospice care is a favored way to go. Hospice patients have tripled since 2000, and today they account for more than half of all deaths in Minnesota.
They are part of a revolution in the way people die, according to Cordt Kassner, CEO of the consulting company Hospice Analytics in Colorado Springs, Colo.
“If you ask people, they say they want to die at home, surrounded by loved ones,” he said.
The remarkable rise of hospice care has been powered by grassroots promotions — books, plays and radio programs to review the various pathways to the grave. “Death Cafes” in public places are proliferating as forums for topics that were once taboo.
Doctors, the gatekeepers of hospice entries, now accept hospice as a natural alternative to their expensive and often uncomfortable treatments.
“There is a huge death-positive movement happening now,” said Christin Ament, organizer of Death Cafes in the Twin Cities. Ament is one of a growing number of “death doulas,” who help people leave this world, just as traditional doulas help people enter it.
“It’s about time for high-quality, end-of-life care,” said Kassner. “It’s been neglected for so long.”
Minnesota’s hospice population spiked to 19,253 in 2016, the latest year for which statistics are available. This includes people getting care in their homes, as well as those living in hospice centers.
No longer fighting death
One reason for the surge is the aging of America. But the increase in the number of people older than 65 since 2000 — 35 percent — isn’t enough to explain the tripling of hospice use.
The main reason, say hospice experts, is that doctors have stopped fighting or ignoring hospices.
A generation ago, doctors didn’t talk about the possibility that their patients might die, according to Nancy Larson, director of community hospice and home care at Our Lady of Peace hospice in St. Paul.
To them, death was the ultimate defeat, to be avoided at all costs.
“Sometimes the family decided not to tell people with a terminal disease,” said Larson. “They didn’t want them to give up.”
Hospitals were focused on prolonging life by any means necessary. That included a battery of chemicals and medicines; multimillion-dollar machines; and pipes, tubes and needles jammed into the body.
“At times, you were fighting against what the body wanted to do,” said Lindsey Pelletier, McKasy’s hospice nurse who formerly worked in intensive-care units. “At times, you were doing something unnatural.”
How does it help?
Today, hospitals have whole teams of specialists devoted to palliative care. Doctors appreciate that for terminal patients, hospice is the best possible care, according to Dr. Glen Varns, medical director of palliative care for Allina Health.
Hospice not only addresses physical pain but spiritual pain, said Our Lady of Peace’s Larson.
Dying people often grieve over the loss of everything that gave their lives meaning. “This could be existential suffering. It could be about the loss of your role in the family, the loss of being the breadwinner, the decision-maker,” she said.
To ease that kind of suffering, hospice allows more contact with visitors in a low-stress environment. “Hospices treat a patient holistically, along with the family, friends and loved ones,” said Hospice Analytics’ Kassner.
In addition, as medical costs soar, hospice care saves a soaring amount of money.
Hospice officials hate to talk about that. Repeatedly, they say hospices give patients what they want, which is not pinching pennies.
But 22 percent of the nation’s medical costs are incurred in the final six months of life, said Susan Marschalk, executive director of the Minnesota Network of Hospice and Palliative Care in North St. Paul.
“When you are in your 20s, 30s and 40s, you are just perking right along with one visit to a doctor a year,” said Larson. “Then you get congestive heart failure” followed by ambulance rides, surgeries and hospital stays.
Hospice activist Ament recalls the $11,000-a-day bills for Mayo Clinic intensive care, where she worked as a nurse. Compare that, she said, with the Medicare reimbursement for hospice care of $180 per day.
“Hospice is so cheap,” she said.
More support for dying
Hospice care is bolstered by community support coming from all directions:
- KTNF-AM 950 dedicates one hour a week to the “Minnesota Hospice and Healthcare Show.”
- Minnesota Public Radio has jumped on the bandwagon, with the nonprofit End In Mind started by “Morning Edition” host Cathy Wurzer. The group sponsors meetings metrowide to discuss end-of-life planning.
- The Death Over Dinner movement encourages hosts to make meals in their homes for the purpose of discussing death. More than 70,000 people in 20 countries have attended such dinners, according to National Public Radio.
- A play, “Lily,” was written by Syl Jones, director of Narrative Health and Medicine for Hennepin Healthcare. The play with end-of-life themes was staged in Minneapolis.
Additionally, roughly 7,000 Death Cafes have been sponsored globally, according to organizers.
Stacy Remke managed a monthly Death Cafe in St. Paul’s Lowertown for 18 months, ending last summer. She said hospice care has reached a tipping point, where enough people have used it so that word-of-mouth endorsement is spreading quickly.
Death is natural, she said, and should be demystified with public conversations. “When did we medicalize death?” said Remke, a University of Minnesota professor and expert in palliative care. “There are worse things than death.”
People are drawn to hospice because it provides what the patient wants.
“The biggest thing is that she finds peace and happiness,” said Mark Ford of Bloomington, who was caring for his wife, Gina, at Our Lady of Peace hospice in St. Paul before she died Dec. 12.
She had ovarian cancer. He knew it would possible to keep her alive for a few extra days in a hospital.
“But I didn’t want her to have a feeding tube and respirator,” he said. “This hospice is excellent. They know how to do this. Our society does not do death very well.”
The final days
McKasy has no problem talking about it.
The former lawyer, who represented Dakota County’s District 39A in the Minnesota House of Representatives from 1983 to 1988, is now a vigorous golf-playing 76-year-old. It’s a little awkward to explain to visitors that he’s terminally ill.
He looks so good, said wife Carolyn, that friends whisper: “He looks like he’s faking it!”
For three years, McKasy took a long pharmaceutical ride, as drugs washed in and out of his body.
He slept for up to 20 hours a day. “The kids had to help him from the sofa to the bed,” recalled Carolyn. He was unable to eat more than a bowl of Raisin Bran for dinner.
Finally, in August, he decided to start hospice care. “My mindset was I would come back and sit in a rocking chair and go downhill and want to die,” he said.
That’s not quite what happened. He called Our Lady of Peace, and now a nurse visits weekly to do whatever pain-relief work is needed.
McKasy is living where he wants to live, feeling how he wants to feel. He has accepted the inevitable.
“I know the shoe is going to drop at some point,” McKasy said to his wife.
She replied: “This really is the right thing to do.”