How to navigate hospice at the end of life

We waited nervously in the lobby of the Ely hospital for a meeting with my dad’s doctor. While we’d learned a day before that Dad — James Sr. — had cancer, we wanted a better idea of how bad it was and what the next steps should be.

In a small exam room, the scans that the doctor put on the monitor were a punch to the gut. There, in black and white pictures of my dad’s insides, were multiple unmistakable tumors: Stage 4 colon cancer that’s spread to his liver, lungs and lymph nodes.

It was so widespread, and so entrenched, the doctor said, if it was left untreated Dad had less than a year and likely only a few months to live.

Dad’s first reaction? He told the doctor that he wanted to fight it. That he believed in miracles. The next morning, after a sleepless and nauseous night preparing for a colonoscopy, he’d changed his mind. No more treatment, he told me.

The doctor called later that day: “Do you want to look at hospice?” he asked.

Navigating the next steps of hospice care can be difficult and emotional for the thousands of Minnesotans and their families who wrestle with determining end of life care. What questions do you ask providers? How do you determine whether hospice or palliative care is best for your loved one? Here’s what experts advise.

For someone with a terminal illness, hospice simply means “care that helps you live as fully and comfortably as possible, surrounded by support for both you and your loved ones,” said Kristina Wright-Peterson, executive director of the Minnesota Network of Hospice and Palliative Care (MNHPC). “Your goals, your comfort, and your values guide every part of the care plan.”

There are now nearly 100 hospice providers in Minnesota.

By Medicare’s standards, hospice is appropriate for someone deemed by two health care providers to have six months or less to live.

Wright-Peterson, a former hospice nurse and hospice administrator, said it’s never too early to start discussing hospice.

But there are things that should spur a discussion about hospice, such as when a person decides they no longer want to go to the ER or hospital if their condition deteriorates. Signs of deterioration include increased falls, a decrease in appetite, dramatic weight loss and/or increasing pain and discomfort.

Hospice can happen in a person’s home or in a hospice residence. In Minnesota, Wright-Peterson said, 54% of people on Medicare choose hospice.

If you’ve decided to explore hospice, Wright-Peterson said it’s a good idea to ask your primary care provider for a list of local hospices in the area. She also encouraged folks considering hospice to look at the Medicare Care Compare website, which lists all hospice agencies that are Medicare certified, as well as data about their quality.

When considering a local hospice agency, here are some initial questions to ask:

What hospice is not, officials say, is giving up. It’s just making a different choice, centered more on the quality of life for the time a person has left.

“I think sometimes people confuse hospice with giving up,” said Sara Revier, a nurse practitioner based in Duluth. “ It’s just a different choice.”

It’s also not the only choice for people with a potentially terminal illness. There is another: palliative care.

“I can help them live the journey that they want,” Revier said. “Maybe recovery is not a possibility, but care may extend their life. They have choices in their treatment.”

Deciding between palliative and hospice, she said, has to do with a patient’s goals.

“What’s most important? What are your values?” she said. “Your time may be limited, but how do I want to live out this time?”

Sara Lassig is a therapist who works with people who have serious and terminal illness. She helps people choose between palliative and hospice care.

Where hospice is meant to provide comfort to people with six months or less to live, palliative care is working with people who have chronic and advanced diseases, but not always terminal.

“Hospice can be a part of palliative care,” Lassig said, adding that a person’s medical provider ought to lay out the options to people and help decide the steps to take.

Lindsey Pelletier works with hospice patients through Our Lady of Peace in St. Paul. Once known as “the Cancer Home,” Our Lady of Peace offers both in-home hospice care and a residential facility.

Pelletier is director of community hospice. Most people choose to do hospice at home. And many of hospice’s most comforting elements go beyond pain management, she said. Hospice includes an interdisciplinary team — a social worker, someone for spiritual care, a home health aide. Even volunteers to help around the house.

“Maybe they have some goals, like recording their life memories, or writing letters to their family members,” Pelletier said. “What we strive for is just really individualizing that experience.”

The key is developing a relationship with them, she said.

She added that they offer 24-hour care in both the community hospice and the residential facility, with a comprehensive team, including pet therapy and music therapy.

Denise Borglund runs the 21-bed hospice residence at Our Lady of Peace. Which option people choose — in-home or a residential facility —often depends on their preference, she said.

But “the people that we see most often are in their last 30 days of life. So, we care for them when their symptom burden increases,” she said. “That’s when it can be difficult for caregivers to take care of them at home.”

In the end, she said, “the overall goal is providing care that is dignified, manages symptoms — whether that is emotional or physical symptoms — and just giving people the opportunity to have the very best days as they go through this.“