Seasons Hospice House reaches 25-year mark: How hospice has changed the way we think about death and dying

Nov. 4—ROCHESTER — Mary Madden's mom, Carole, entered hospice in January 2020. A month later, the memory care facility where she was receiving care closed its doors to visitors in response to the pandemic.

Up until that point, family and friends had been able to visit Carole. After the shutdown, no one was able to visit Mary's mom except a hospice nurse and an aide. Carole faced the prospect of living her final months of life in isolation.

"It was horrible," Mary said. "We knew she was declining, not actively dying. But the fact that none of us could see her and touch her was so terribly hard."

As Carole continued to fade and nursing home facilities showed no sign of relaxing their restrictions on visitors, the family made arrangements to move Carole to Seasons Hospice House in Rochester.

The house changed everything. Carole's children, grandchildren and friends were finally able to see her. They were able to get her outside, so she could take in fresh air for the first time in months.

There is a pond area on the Season Hospice House grounds, and a long sidewalk that leads to it. And every day, Carole was taken in her wheelchair to the pond, so that both Mary Madden and her mom could take in the birds, the flowers and the water.

Carole lived only 10 days after being moved to the house, but those 10 days were "beautiful," Mary Madden said. She is convinced her mom might have died earlier but for her desire to hold on and see her family and friends one last time.

"She was so relaxed — no anxiety, no fear," Mary said. "She knew death was coming. I asked her, 'Mom, do you feel like the end is near?' And she'd say, 'Yes.' And I'd say, 'Anything you want to do today? Get outside,' (she'd say)."

Today, Seasons Hospice is commemorating an anniversary: It was 25 years ago that Seasons Hospice House admitted its first patient.

The anniversary is a reminder of how attitudes and understanding about hospice have changed over the decades and how it has changed and reshaped people's concepts of death and dying.

Julie Assef, a Season's Hospice admissions coordinator who has been with the organization almost from the beginning, has seen the change in attitudes in the presentations she has given to the public. Twenty-five years ago, a single hand might fly up when she asked an audience whether anybody knew someone who had been in hospice. Today, almost all hands go up.

Seasons Hospice was a home hospice agency for a time before it opened its house. Back then, Seasons Hospice staff were typically caring for three patients in their homes. Today, it typically cares for at least 80 people at one time.

For the uninitiated, hospice may conjure up thoughts of death and dying, grief and dread. But for many who have experienced loved ones go through hospice, it stands for the ability of those who are entering the last stage of life to make choices: To live their best lives even as they are dying.

Hospice philosophy is built on the idea that "each person defines quality of life in their own way," Assef said. "And how we establish and evolve our plan of care is based on what does this person want? And how does this person want to live through this time?"

Assef tells the story of a patient who wanted to complete the circle of his life by dying on the farm he had been born and raised on. He was approaching his 100th birthday and the farm was a Century Farm.

"(The family) really wanted to get him home," Assef said. "And we helped them to get him home to his Century Farm. He lived for less than a day. But that's where he died. And that's the story that the family can tell forever."

Yes, Seasons Hospice House is a place where people go to die, but it has been the site of celebrations, where the grandchildren of patients have gotten married and babies have been baptized.

"None of us is going to escape the death part of it," said Pam Schaid, Seasons Hospice's first executive director. "So how do we make it be the best that it can be? That's what I mean about living until you die. And those are the choices that people get to make."

When the house opened, it became the first Medicare-certified, independent, free-standing residential hospice facility in Minnesota. Before then, families couldn't use Medicare, federal health insurance, to help pay for care at the house.

"It took five years to get to the point where it met all the Medicare and medical assistance criteria for being able to open. It was a huge, huge undertaking," Schaid said.

The idea of providing specialized care for dying patients began in England in the 1950s, when a pioneering physician named Dame Cicely Saunders created the first modern hospice there in 1967, according to "A Brief History of Hospice Care and Palliative Care in the U.S."

Hospice care and the philosophy behind it soon spread to the U.S. Its popularity grew in the U.S. when physician Dr. Elisabeth Kubler-Ross interviewed 500 dying patients for a book she published in 1969. "On Death and Dying" became an international bestseller. The book is a plea for home care as opposed to treatment in an institutional setting. It argues that patients should have the right to participate in that decision-making.

Nothing completely erases the profound sense of loss and grief when a family member or friend dies. But it can be tempered and balanced with a sense of joy knowing that the wishes of the dying have been followed and fulfilled.

"We can make death be a time when people look back on it and feel good about the situation," Schaid said. "It's always sad. We can't take that away. But they can feel that they did everything possible.They followed the wishes of the loved one, and that it was as good as it could possibly be."

Mary Madden lived through that experience with her mom, Carole, and it's why she can say today, "That place is just magical."

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