Dealing with a loved one facing death from a terminal illness is the perhaps the most difficult, challenging task facing anyone in a lifetime.
Bridges: Resources for end-of-life realities
Bridges is a nonprofit, independent charity dedicated to providing neutral, unbiased information on "end-of-life" services in the Lowcountry counties of Berkeley, Charleston, Colleton and Dorchester.
More at http://bridgessc.org/ or 216-7323.
Among the tough decisions, especially in the Charleston area, is choosing the right hospice care service, which helps ease the suffering in the last weeks and days of life. More than 40 providers serve the area. All but two are for-profit businesses.
Hospice by the humbers
In 2012, an estimated 1.6 million patients in the United States received services from hospice.
When hospice care in the United States was established in the 1970s, cancer patients made up the largest percentage of hospice admissions. Today, cancer diagnoses account for less than half of all hospice admissions (36.9 percent).
The top four non-cancer primary diagnoses for patients admitted to hospice in 2012 remained debility unspecified (14.2 percent), dementia (12.8 percent), heart disease (11.2 percent), and lung disease (8.2 percent).
In 2012, about 35 percent of hospice patients died or were discharged within seven days of admission.
83.4 percent of hospice patients were 65 years of age or older and more than one-third of all hospice patients were 85 years of age or older. The pediatric and young adult population accounted for less than 1 percent of hospice admission.
Of those receiving hospice, 81.5 percent were white and 56.4 percent were women.
The number of hospice programs nationwide continues to increase, from the first program that opened in 1974 to more than 5,500 programs today. (This estimate includes both primary locations and satellite offices. Hospices are located in all 50 states, the District of Columbia, Puerto Rico, Guam and the U.S. Virgin Islands.)
Source: National Hospice and Palliative Care Organization's "Facts and Figures: Hospice Care in America" Report, released in October 2013.
Now, a nonprofit that originated in 1980 as the first hospice in the Lowcountry, is seeking to help caregivers make a decision not only about hospice but an array of "end-of-life" issues.
Bridges, which changed its name from Hospice of Charleston Foundation in November, seeks to offer unbiased guidance about hospice and palliative care, as well as offer services to caregivers, form bereavement support groups, and provide community education and professional training.
Bridges will not provide hospice or palliative services itself nor be affiliated with any particular service provider. Instead, it seeks to be a neutral conduit to services appropriate for each individual hospice case.
The nonprofit navigator is needed badly, according to Martha Jane Hudnall, who recently resigned from a local hospice service provider.
"From my perspective of working with senior adults for nearly 30 years, there is a need for an impartial, third-party group to offer solid information and clarity on services," says Hudnall. "There's a lot of both misinformation and good information that gets obscured. We needed a group to serve as a clearinghouse for services. Before Bridges, we didn't have that."
The emergence of Bridges comes at the same time that the Affordable Care Act and the aging population may expand the numbers of people getting hospice services.
Sandy Slavin, the planning and resource consultant for Bridges, says the ACA, or "Obamacare," may provide services to those who weren't covered by Medicare or Medicaid in the past.
"The problem in the past was the person under age 65 who loses their job because they are fighting cancer and lose their insurance. They had no money for hospice services. That is no longer the case because everybody is going to have hospice under the ACA," says Slavin.
With the inevitable increase in demand for hospice services, the landscape for it will change, especially in South Carolina, which does not require a certificate of need for a service to open.
Besides the dizzying array of hospice providers, the Charleston area's hospice scene is further complicated by the fact that it has two cancer research hospitals, the Medical University of South Carolina and Roper St. Francis Healthcare.
Becky Van Wie, associate director of Bridges, says that many terminal cancer patients will enroll in clinical trials at MUSC or Roper, but that the trials are considered "treatment" by many insurance companies.
"Hospice is when someone has a terminal illness and you are in your last month of life. If you're in a trial, you can't receive hospice because of being in the trials, but you can qualify for palliative care," says Van Wie.
What's the difference between the two?
Hospice involves a team of specially trained professionals under the direction of a physician that provides care to a person facing death, either at home or in assisted living and nursing home settings, or an inpatient facility. Palliative care is similar but without a diagnosis of terminal illness.
Van Wie adds that the line between the two used to be strict but is now blurring.
Bridges has evolved quite a bit since its start in the early 1980s as Hospice of Charleston, a home-based hospice provider.
In 2006, the nonprofit opened a 20-bed inpatient facility in Mount Pleasant but soon faced "huge financial challenges" as a result, according to Van Wie. Two years later, the board voted to sell the facility to a for-profit health care company, Gentiva Co. As part of the sale, the nonprofit relinquished the name Hospice of Charleston and more than two decades of name recognition and reputation.
The nonprofit, which still owns the building, reinvented itself as Hospice of Charleston Foundation, partnering with several hospices to offer grants to unfunded patients. In the ensuing years, the foundation helped about 250 people with nearly $300,000 worth of assistance, says Van Wie.
She added, however, that "it never really worked with way we wanted it to." Part of the struggle was providing nonprofit dollars to for-profit businesses.
The nonprofit maintained a public presence by offering Shannon's Hope, a weekend summer camp for grieving children, and by holding an annual Candlelight Memorial Ceremony at Colonial Lake before Thanksgiving.
The organization took a hiatus of sorts before its board identified a void: the need for an organization to provide neutral guidance on local services. With the change in focus, Bridges was born. It's tagline is "Resources for End-of-Life Realities," which reflects the range of services beyond hospice service recommendations.
"We're doing everything that people need at the end of life," says Van Wie.
Bridges is small but nimble. The four staffers are all part-time and on contract. Van Wie adds, "The board didn't want or need full-time employees."
Close to home
Among those staffers is Slavin, who brings five years of experience of working with Lutheran Hospice to the table and is a driving force in helping set a new course for the organization.
Slavin, however, suddenly has found herself in role of caregiver for husband, retired neurologist Dr. Laurence Slavin.
The Slavins were vacationing in Antigua, Guatemala, during the Christmas holidays when the 75-year-old tripped on a cobblestone street, fell and hit his head. He suffered a subarachnoid hemorrhage and had to be flown back to Charleston. As of last week, he was being treated at the Medical University of South Carolina.
Sandy Slavin says he was able to recognize family members, but his condition is day-to-day.
"For the long term, I have no idea what the future looks like," says Slavin of her personal situation. "But this just shows that life can change in an instant. People think it (aging and decline) is going to happen slowly, but in an instant, you can be in a mess and all of sudden, trying to figure out what you are going to do."
Reach David Quick at 937-5516.
Sandy Slavin, the planning and resource consultant for Bridges, suddenly has found herself in a personal role of caregiver after her husband, retired neurologist Laurence Slavin, fell during a trip to Guatemala, hit his head and suffered a severe hemorrage. David Quick/postandcourier.com×
Sandy Slavin is the planning and resource consultant for Bridges, a nonprofit serving people dealing with "end-of-life realities."×