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Family says hospice was a life choice

todayMay 31, 2024 2

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PIPESTONE, MINN. (KELO) — Hospice is as much about living as it is dying, said Sherri Post, the manager of Pipestone County Home Health & Hospice in Pipestone, Minnesota.

“You can go out in everyday life, go to the places you love to eat, enjoy your family, if you are feeling good,” Post said. “One of our goals is to have resources to make sure that the patient feels good, that they live life to fullest.”

Former U.S. President Jimmy Carter’s more than year long stay in hospice care has drawn attention to the care option. And Post and Jill Johnson, a registered nurse with hospice, said they want families and persons to know that hospice doesn’t not mean death is immediate.

Post said some patients are with hospice for several months. Others are in hospice care, they leave hospice care and return to hospice care, she said.

In 2021, 1.71 million Medicare beneficiaries were enrolled in hospice care for one day or more, the National Hospice and Palliative Care Organization said in December 2023.

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One requirement for a hospice patient is their prognosis is 6 months or less.

Johnson said hospice patients have reached the point where they know they no longer want to continue with treatment.

When someone chooses hospice care with only days to live, “most of us feel like ‘if we could have just seen you a month before,” Johnson said.

Janice VanRoekel’s husband Willis was in hospice care for almost a year. He died in 2017 but memories can still cause her to cry. But on a recent weekday, VanRoekel and her daughter Melissa Scotting returned to the hospice house in Pipestone to talk about Willis and hospice care.

Scotting, VanRoekel, Post and Johnson, along with another nurse, talked about Willis, children, grandchildren and summer schedules and how much the kids and grandkids have grown. The conversation was comfortable. Although it had been some time since all had seen each other, the relationship between them was evident.

From left, Janice VanRoekel, Sherri Post of hospice and Jill Johnson of hospice.

At first, when they heard the word hospice, it was scary, VanRoekel said. Willis suffered from illnesses related to Agent Orange exposure while in the military in Vietnam.

The oncologist at the Veterans Administration Hospital in Sioux Falls told them the treatment for Willis wasn’t working and recommended they consider his quality of life.

But as they talked with the oncologist and learned more about hospice and her husband’s prognosis, they got comfortable with hospice.

“Hospice can be whatever you need it to be,” Scotting said. Scotting is a nurse practitioner who helped explain hospice to her parents, especially her dad.

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Post said choices, including decisions of where to receive the care, are a focus of hospice care.

“He wanted to be at home,” VanRoekel said.

The hospice in Pipestone has a hospice house with several rooms or it provides the care in the home. The common thread is that an RN is available 24 hours-a-day, seven-days-a week, and that other care is available throughout the week. For example, instead of going to the emergency room for pain or other issues, the hospice nurse can be consulted, Post said.

The alternative to an emergency room is important because the trip can be exhausting for hospice patients, Johnson said.

“Quality of life, that’s our huge focus,” Post said.

“I think it helped (mom’s) quality of life as much,” Scotting said. “It’s not just about the patient.”

Although the VanRoekels had family in town, they couldn’t be there for every task.

“They came over to help her do things, she couldn’t do,” Scotting said.

From left, Janice VanRoekel, Sherri Post of hospice and Jill Johnson of hospice talk about VanRoekel’s husband and hospice.

Post emphasized that hospice is about choice. One of the choices Willis made was to continue to use compression socks because they made him feel good, even after his legs swelled significantly. Hospice staff helped put on Willis’s compression socks when it became too difficult for his wife.

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Another of Willis’s choice was to attend an NCAA Division II basketball tournament in Texas where a grandson was a coach. Hospice staff and his family made that trip happen.

That trip and another trip to Florida were talked about when the family met with the hospice staff this week. The memories caused some laughter even some tears.

Hospice patients may want that trip to Texas or a girl’s trip to Deadwood. Or they may want to go out to eat at a local restaurant and have a beer, Post said.

Those choices can happen as long as hospice can help and the patient is able. But, eventually, the illness progresses to where life transitions to death.

Patients and family, sometimes it’s only family, ask what the final days will be like.

“We can see the signs coming,” Johnson said. Personalities can change, eating habits will change. The person may no longer desire to eat.

“A lot of times food may make them feel worse,” Johnson said. If that happens, the person is not dying because they are not eating, they are not eating because they are dying, she said

The constant message is that a patient is able to feel comfortable, and again, make choices, Johnson and Post said.

“Nobody says they want to die in pain,” Johnson said.

Willis knew the signs, his wife and daughter said. He asked for a grilled supper in February and that as many family members attend as possible.

Not long after supper, he sat in his chair. “He closed his eyes and he was gone,” VanRoekel said.

“It was actually very peaceful,” Scotting said.

His time in hospice helped to make it a peaceful end, the family said.

The hospice house in Pipestone. The care is also provided to patients in their home.

The conversation around the table this week in the hospice home focused on the VanRoekel’s experience with hospice. Family members said Willis bonded with staff members, including the volunteer who visited so VanRoekel could go to the hair salon, or get groceries or do other errands.

Post said connecting staff and volunteers with patients is important. VanRoekel recalled the social worker who worked with her and her husband. And they talked about how staff enjoyed talking with Willis.

Hospice support continues after death with grief support services. VanRoekel said the social workers checked in several times after her husband died.

The average hospice stay for Medicare patients in 2021 was 92 days or three months, Statista said in February of 2024.

The hospice in Pipestone serves a 30-mile radius.

Written by: The Dam Rock Station

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