Early in the 20th century, there were few choices to be made about one's final hours and even rarer discussions about that final journey.

Within the past two decades, hospice programs changed the discussion about death and where people choose to die, according to local experts. With the advent of palliative care in the 21st century, Butler County residents with terminal illnesses have more control over the quality of the end of their lives as well as their deaths.

“It's OK for them to die at home, and it's OK to be on a hospice program, and it's OK to make choices about not wanting certain treatments, so that has gotten better,” said Suzanne Grove, director of hospice and palliative care of VNA, Western Pennsylvania Lutheran Senior Life.

While VNA has served Allegheny, Armstrong, Butler, Lawrence, Mercer and northwest Westmoreland counties since 1981, the organization no longer provides inpatient hospice following a national trend of facility closings across the United States.

And although the places where hospice is administered may have changed, the need for the program — which provides care and support for people with a life expectancy of six months or less, and palliative care focusing on helping terminally ill people and their families maintain their quality of life — is growing.

Medicare recipients receiving hospice care increased from 1.27 million in 2012 to 1.49 million in 2017, according to the National Hospice and Palliative Care Organization.

Of the 1.1 million Medicare recipients who died while enrolled in hospice care, about 48 percent chose to die at home, about 32 percent chose a nursing facility, and about 11 percent chose a hospice inpatient facility.

According to the most recent estimates available from the U.S. Census Bureau, about 24 percent of Butler County residents are 60 years old and older. These Baby Boomers are more educated about their options and making different choices about their deaths.

THE FUNERAL

“There was a time when you didn't talk about death,” said Glenn Miller, owner of Thompson-Miller Funeral Home, 124 E. North St.

In 1927, funeral services and visitations took place in people's homes over the course of days. “As time went on, it got out of the homes and came to the buildings called funeral homes, and over the years it went from two days in a home to a day and a half at a funeral home,” he said.

Home visitations eventually evolved into funeral homes because most people did not want to be that close to death, said Bruce Vasey, funeral director with Thompson-Miller.

“Here they can come in, do what they need to do and they can walk away from it. It's not their home; it's somewhere,” he said. “As they need breathing room or need to go for a walk or have a good cry, they can walk away from it. At their home, that's their home.”

Over time, the options for final services became more readily discussed, Miller said.

“It's more open than it's ever been,” Vasey said. “People have choices and they want to make choices.”

About 50 percent of their clients prearrange their funerals, considering it a courtesy to the survivors, Miller said.

“It's not usually emotional” when people make prearrangements, he said. “That's the advantage of preplanning; you're making decisions when you're not emotional or under pressure.”

Many 21st century realities have affected the industry. Services can be livestreamed for family members who cannot be present. Grief counseling, which did not exist 30 years ago, is offered, Vasey said. The funeral home's own grief companion dog, O'Shea, retired in June.

Trending toward cremation

Nationwide, cremation has grown rapidly due to its cost, Vasey said. Cremation is one of four choices a person has for their final disposition. Additional choices include burial, entombment or donating their body to science.

By the year 2035, adults ages 65 and older are projected to outnumber children for the first time in American history, according to the 2019 Cremation and Burial Report. With this large aging population comes a natural increase in the death rate.

By 2040, according to the report, the cremation rate in the United States is projected to be about 79 percent, while the burial rate is predicted to be about 16 percent, signifying that cremation is no fading trend — it is the new norm, set in motion by baby boomers' evolving end-of-life preferences.

The national median cost of a funeral with viewing and burial for 2016 was $7,360, while the national median cost of a funeral with viewing and cremation in 2017 was $6,260, according to the National Funeral Directors Association.

“The consumer drives the final choices,” Vasey said. “We live in an information age. There are choices and people want to be involved with them.”

HOSPICE care

Hospice care has transformed in the past five to 10 years with more medical treatments available and patients being treated longer, Grove said.

A decade ago, a 24-bed inpatient hospice facility was built by the VNA in Butler Township. In the early 2000s, there was a greater need to take care of patients in an inpatient environment, Grove said.

However, the facility — equipped with private bedrooms, a communal kitchen and family living room — was only open to those who could not manage their symptoms at home.

Over the years, Grove said regulations about who could be admitted tightened, which made having patients in the facility more difficult. Earlier this year, the VNA chose to no longer offer an inpatient hospice.

In Butler County, other hospice care providers include Visiting Nurses Association-Western Pennsylvania in Butler, Medi Home Health & Hospice in Butler, Heartland Hospice in Seven Fields, St. Barnabas Hospice in Gibsonia and Heritage Hospice in New Kensington.

Inpatient hospice is still available for those who do not want to die at home or in a hospital.

Concordia Lutheran Ministries, a faith-based nonprofit organization, has the only inpatient hospice facilities in the area, according to Roni Lucas, director of customer experience.

The organization — which serves Armstrong, Beaver, Butler, Allegheny, Westmoreland and Lawrence counties — has a 10-bed inpatient unit in Cabot, a six-bed inpatient unit in Wexford, and a 10-bed inpatient unit in Beaver.

Private rooms are homelike and there is a community kitchen for families and volunteers.

“If the patient can't be home, this is the next best thing,” Lucas said. “It's a homelike environment, not institutional.”

PALLIATIVE CARE

Palliative care conversations focus on quality of life, while hospice focuses on quality of death, said Jenna Rhodaberger, a social worker in the Butler Health System palliative care unit.

“Hospice is a word that can often be really taboo,” Rhodaberger said.

As the state's population ages, palliative care has gained momentum, said Dr. Dillon Stein, a palliative care physician.

“Part of what the health system saw is a growing need as the population gets a little bit older and shifts,” Stein said. “There's a growing need for palliative care.”

In August 2015, Dr. Kathy Selvaggi and Lisa Doverspike, a physician assistant, opened the palliative care program at Butler Health System.

In 2016, the outpatient clinic was founded for Butler County residents with serious illnesses.

People are living longer and have multiple diseases and issues, Selvaggi said.

The program affects more than 2,000 people in the community yearly — and that number is climbing, Selvaggi said.

Medical care is aligned with the patient's goals with palliative care, Stein said.

“For some people, goals are to be comfortable, not go through more medical treatment,” he said.

Staff members are trained to have difficult conversations, Selvaggi said. For some health care providers, death can be an uncomfortable topic.

In this case, that is where palliative care is different from hospice. If someone has a serious or terminal illness and feels that preparations for end of life and the comforts of home are most important, then hospice is the choice for them, he said.

“The difference between hospice and palliative care is that we can prepare for those things and we should be talking about those things and serious illness, but that doesn't necessarily mean that it's at the right place in their disease to say that's necessary,” Stein said.

Patients and families discuss the progression of their illness and about “what may be coming down the road,” Selvaggi said.

“Beyond the four walls of a hospital, life happens,” Stein said. “The question is how does that impact people's decision-making and have an impact on care.”