John Willems' progressive neuromuscular disease is gaining on him.

The 44-year-old Lansing man can no longer use his arms or legs.

But he still greets visitors with a big smile from his brown leather recliner, where he watches through large windows as birds and deer roam a meadow.

Willems, who has Lou Gehrig's disease, has lived in the eight-room Hospice of Lansing for about a month.

It's one of three Lansing residences offering comfort, care and pain management to people who have incurable conditions and choose not to be hooked up to hospital machines near the end of life.

And with a growing demand for hospice services, the all-volunteer Eaton Community Hospice will open a three-bed Charlotte residence in June. The new facility will be the 16th in Michigan.

But while many health and government officials are sold on hospice benefits, patients are slow to turn from futile disease-fighting treatment to hospice. Factors include society's reluctance to talk about death, fear that hospice hastens death and cost concerns, experts say.

Facing death

Hospice actually saves money for the federal Medicare-Medicaid system and for hospitals, advocates say.

But the personal decision to turn to "palliative care" - focusing on physical, emotional and spiritual comfort - is difficult.

"There's a fear of facing death,'' said Barbara Kowalski, Hospice of Lansing director. "Most people don't want that information in advance.''

Willems, a former truck driver, has turned that corner. And he's relieved.

"It takes a lot of stress off family members and a lot of stress off the person who is sick," he said. "You get to enjoy family and friends more ... enjoy what time you have left."

"They try very hard to make it homelike,'' Willems said of his sunny room, equipped with an entertainment center with television and VCR, a sofa-bed draped with a handmade quilt and large green plants.

Hospice users are increasing in Michigan, but advocates want to see them earlier, said Penny Murphy, director of the Michigan Hospice and Palliative Care Organization. Doctors mention the option late, she said, and patients still seek high-tech treatments.

Late comfort

In 2001, 27,500 state residents received hospice care in their own homes or an in-patient residence. That's a little more than one-quarter of the 90,000 people who die in Michigan every year.

"Our whole culture is death-denying,'' Murphy said. "Families are not ready to hear it. Physicians may have a difficult time telling someone their life is coming to an end, that they are not able to cure their disease.''

Medicare-Medicaid will cover at least six months of hospice care, which doesn't rush death but allows it to happen naturally and more comfortably.

Care can include psychological support, a comforting massage or someone to do chores. It can even include child care.

Mark Berthold, who lives between Charlotte and Eaton Rapids, got that help from church and Eaton Community Hospice volunteers last year. But he wishes an Eaton residence had been available when his wife, Tara, was dying of brain cancer at age 33.

"It was a huge relief to have somebody here when the kids got off the bus,'' Berthold said of Becky, 3, and Connor, 7.

"Having a hospice house here would have been fantastic. It got to be quite a burden at home taking care of everything,'' said Berthold, a state environmental lab scientist.

Tara died Dec. 9 at Ingham Regional Medical Center, five days after slipping into a coma.

Hospice varies

Mid-Michigan's hospice residences operate differently, but none turns anyone away for inability to pay. Depending on licensing, most can bill Medicare-Medicaid for certain costs but rely on donations for the rest if families cannot pay.

The oldest, Hospice of Lansing, formed in 1979 by community volunteers, has a $125-a-day room-and-board fee, not covered by Medicare or all insurance companies.

However, "50 percent of our clients are on a sliding scale,'' Kowalski said.

Sparrow's 15-room Hospice House of Mid-Michigan in the St. Lawrence building has a $150 daily fee, but also offers a sliding scale. Both also offer in-home services for about $118 a day.

Volunteers at Mother Teresa House in downtown Lansing serve one or two patients at a time at no cost, Director Karen Bussey said.

"People that can't pay come first," she said. "We provide 24-hour care but one of the other hospices oversees medical care."

The new Eaton hospice house will operate that way, Director Margaret Kyser said, giving Eaton County residents priority.

Michigan tackles dying

Michigan has made strides in end-of-life issues, professionals say, pointing to then-Gov. John Engler's 1999 Michigan Commission on End-of-Life Care. It led to 15 bills enacted last year to improve pain management of dying patients and expand access to hospice care.

"Most states have had nowhere near this much focus,'' Murphy said.

Now, the Michigan Partnership for Advancement of End of Life Care, with 40 organizations, is educating underserved communities about hospice. It has visited American Indians in Sault Ste. Marie, blacks in Detroit, Latinos in Muskegon and rural Upper Peninsula residents, Murphy said.

Americans still don't comfortably discuss end-of-life issues but, "20 years ago, people never talked about discontinuing treatments that weren't effective,'' said Michelle Wiseman, Sparrow Hospice Services administrative director.

And hospices are attracting volunteers.

"It's the miracle that happens here again and again,'' Bussey said. "It changes the community. We are all enriched.''