LeadingAge Magazine · May-June 2019 • Volume 09 • Number 03

Comfort and Quality for Patients and Families at the End of Life

May 21, 2019 | by John Mitchell

Hospice and palliative care providers, like other sectors of aging services, are adapting to growing demand.

Dying has always been a certainty. However, the way we die in hospice care is reinventing the final journey for the better. LeadingAge hospice providers don’t just see their work in an end-of-life arena. Instead, there is a strong belief within the sector that good hospice care is an accent on a life well-lived.

“End-of-life should be celebrated as much as birth and the beginning of life,” says Norm Mast, president & CEO of Community Hospice, based in New Philadelphia, OH. “We want the last 3-6 months of life to be a great experience, rather than a crisis.”

To that end, they work to meet patients where they are, rather than telling them where they should be. Mast and his team strive to help patients meet the end of life without regrets, and if the patient desires, to resolve any outstanding issues.

Community Hospice cares for 280 patients a day, seeing 97% of its charges in-home. The remaining 3% are in nursing homes, or come to the organization’s 12-bed inpatient unit for family respite or out-of-control symptoms, such as pain. Community Hospice also provides palliative care for chronically ill patients, with an average length of stay of 220 days. This compares to hospice care of less than 6 months.

“With hospice care, we’re dealing with the psychological and social impact of (a patient’s) prognosis. They want to stay out of the hospital and have good quality of life,” says Mast, who began his health care journey as an intensive care nurse.

To meet the growing demand, 18 months ago Mast added a full-time recruiter to ensure Community Hospice is staffed with caregivers committed to the specialty of dying. The organization also provides bereavement services to families to cope after a patient dies. It raises about $1 million a year to underwrite care, as no one is turned away, regardless of ability to pay.

The work isn’t easy—especially in cases of children with a terminal prognosis. No matter the age, hospice patients and their families need help working through the dying process; they are often in crisis. For parents to accept hospice care, it is often a sign they realize their child is dying.

“We’re coming into a private space to be accepted into a family, and it’s a privilege and an honor," Mast explains.

Demand Grows

Demand for end-of-life and chronic care is on an upward curve. The 65-plus age group will increase to a quarter of the population from the current 15% by 2060, according to Lori Bishop, vice president of palliative and advanced care at The National Hospice and Palliative Care Organization (NHPCO). Further, by 2030, all baby boomers will be older than 65.

“We expect the need for palliative and hospice services to increase simultaneous to a decline in workforce. This will require evolution of the way services are provided,” says Bishop. “We are hopeful […] that ill individuals and families will eventually have access to a continuum of services […] ideally […] provided wherever an individual calls home."

No matter the age, hospice patients and their families need help working through the dying process; they are often in crisis. For parents to accept hospice care, it is often a sign they realize their child is dying.

LeadingAge members are increasingly part of a growing network of hospice and palliative care providers nationwide. To help educate about that role, LeadingAge and LeadingAge Ohio worked with the National Partnership for Hospice Innovation to produce a background report on hospice care. Titled Nonprofit Hospice Services: Where Mission and Community Meet, the in-depth guide is designed to help increase the number of people who can benefit from hospice care. The benefit to LeadingAge communities—including as part of capitated delivery models—are also examined. The need is acute. According to the report, in 2016 less than 1/3 of Medicare beneficiaries were enrolled in hospice benefits with a length of stay of fewer than 7 days.

Bill Finn, CEO of Hospice of the Western Reserve, Cleveland, OH, reports that the mission of hospice is to create a support system of compassion and dignity that anyone envisions for themselves.

“I tell employees at orientation that we are making the bed that we will lie in,” he says. “What do they want that to be?”

Hospice Report

Hospice of the Western Reserve cares for more than 6,000 hospice patients a year, and about 2,000 hospice and palliative care patients a day. This includes 25 pediatric hospice and palliative care patients every day. The organization is celebrating its 40th anniversary. It provides services fully in 9 counties and partially in 3 additional counties, and competes with about 50 other hospices, some for-profit. Finn says that palliative and hospice care complement each other and are intrinsically linked.

“When choices exist, and when patients are able to develop a trusting relationship and goals of care truly are the driver of care, then palliative care becomes a realistic option—and hospice care is used much more frequently,” Finn explains.

In addition to full-time staff, the organization has 2,000 trained volunteers who help the nonprofit to deliver 13% in operating savings, much higher than the percentage required by Medicare for such programs. Hospice of the Western Reserve is the highest ranked service provider in its service area.

Finn says the organization tends to get the highly complex patients, such as those with cardiac problems and ALS. One patient, whom he called Michelle, had unfinished business with her husband and family. The staff deployed art, music, and pet therapy to help the patient work through and resolve the issues. Volunteers, as well as the core staff of physicians, social workers, spiritual care, and the bereavement team, also assisted in the family’s care. Finn adds that bereavement services—to aid families after the hospice patient dies—is required under Medicare protocols. Finn also says that later this year, Hospice of the Western Reserve will offer a hospice program tailored to Vietnam veterans, who often have different end-of-life issues than civilians or even other veterans

The primary regulatory issue mentioned by the sources interviewed was meeting Medicare guidelines for the level of care and opiate pain controls used in caring for patients.

Editor’s note: The Medicare hospice wage index proposed rule was issued by the Centers for Medicare and Medicaid services (CMS) on April 19. The proposal identifies payment and policy changes that CMS intends to make beginning on Oct. 1 for fiscal year (FY) 2020. See this LeadingAge article for more details.

Chapters Health System, in the Tampa, FL area, has been providing end-of-life services since 1983. President and CEO Andrew Molosky sees its hospice services as just one part of total wellness. He says its mission is simple, as a nonprofit: to provide the highest quality of care in the environment that the patient and the family wish to call home. This not only includes hospice but a continuum of care for chronic conditions before end-of-life. Preventive care, palliative medicine, home health, and case management are in the organization’s care mix.

"This has allowed us to […] increase access and increase the care people can receive in their homes much earlier than a traditional hospice organization,” says Molosky. Forming such relationships sooner helps Chapters Health to drive good clinical outcomes and deliver cost efficiencies for payers. He explains that the way many chronic and end-of-life benefits are delivered under current models is chopped up and disjointed. The result is more readmissions, higher costs, and a poorer patient experience.

“’We’re committed to stopping fragmented care,” says Molosky. “We’re committed to a seamless continuum of chronic and end-of-life care, even if the patient doesn't have a defined benefit […] and to drive the quality experience for the patient.”

Chapters Health uses 2 primary delivery models. The first is traditional fee-for-service, caring for 20,000-25,000 patients a year, one of the largest in the country, according to Molosky. It also offers capitated services to payers, which can mean anywhere from 1 to 100 patients a day. This includes caring for patients on an inpatient basis in the organization’s hospice houses.

“We’re trying to actively change the paradigm around how many lives are on our service," says Molosky. "(We) consider ourselves a social impact organization to drive wellness and not just illness.”

For example, he proposes, why limit care to just the hospice patient? Why not care for the family? If Dad smokes and has lung cancer and his son also smokes, why just bide time until they also see the son in hospice?

The way many chronic and end-of-life benefits are delivered under current models is chopped up and disjointed. The result is more readmissions, higher costs, and a poorer patient experience.

It's a “circle-of-life” approach in which hospice care is an important component. As an example, Molosky cites the hospice care Chapters Health provided to a well-known matriarchal community leader. The family was very satisfied with the end-of-life care; her passing was peaceful. The family subsequently made a monetary donation.

And that's good, according to Molosky. But what's great—and how the organization fills its role as a social impact organization—is that the family also donated their mother's furniture and housewares to one of Chapters’ thrift stores. A couple of weeks later, 2 teenage brothers, who had been removed from their homes and were receiving a stipend from the state, acquired many of the items donated by the family.

"These kids are off the street and starting their lives, benefitting from the service we're providing," says Molosky. "That to me is when you move from a health care company to a wellness company. End of life is where you see us, but the benefit we bring is for those who carry on."

John Mitchell is a writer who lives in Cedaredge, CO.