Celebrating its 30th anniversary last March, Hospice & Palliative Care Charlotte Region is the oldest and most experienced provider of hospice and palliative care in an eight-county area that includes Cabarrus, Catawba, Cleveland, Gaston, Iredell, Lincoln, Mecklenburg and Union counties.It is an independent, not-for-profit organization which serves all medically eligible patients and their families, regardless of age, illness, complexity of care, or ability to pay. Its 398 professionals and over 400 trained volunteers care for more than 1,000 patients and their families every day.
While most hospice programs across the nation are small, Hospice & Palliative Care Charlotte Region ranks in size in the top two percent in the country. Its palliative care program is unique, and it is the only hospice program in the region with a separate children’s team. It serves people of all faiths, ethnic backgrounds, socio-economic levels, ages, and illness categories. Governed by a volunteer board of directors, it exists to provide service, and all profits are used to support its mission.
Founded by a small group of people in 1978, the organization was originally called Hospice at Charlotte. In 1983, Janet Fortner, a young psychotherapist, took over its leadership. Twenty-five years later, she is president and CEO of the still-growing organization.
“I though I would stay for about five years,” says Fortner, “but the work is so challenging, rewarding, and captivating, that I am still here.”
Fortner understands the need for hospice from her personal experience. Her father’s dying mother came to live with her family in Philadelphia when Fortner was a child.
“There was no hospice then,” she recalls, “I saw how difficult it was for my mother to tend to my grandmother with no help at all.”
The family moved to West Virginia when Fortner was about eight years old. They lived on 200 acres on the side of a mountain. She graduated from West Virginia University in Morgantown and earned her master’s degree in social work from the University of Kentucky. Marriage brought her to Charlotte in 1978. When the top job at the young hospice organization opened up, she applied.
“At that time, the budget was $150,000. There were seven full and part-time staff members, and we were caring for about 12 patients a day,” Fortner laughs. “I knew we needed to grow.”
Today, Hospice’s budget is $33 million; it has close to 400 people on staff and cares for almost 1,000 patients every day. It reaches approximately 22,000 individuals every year through its full array of services.
Fortner, herself, is a recipient of The Charlotte Business Journal’s Women in Business Achievement Award, as well as the Peter Keese Award, the highest award given by The Carolinas Center for Hospice and End-of-Life Care, for exemplary service to the hospice movement on the state and national levels.
Dying with Dignity
Hospice is a concept rooted in the centuries-old idea of offering a place of shelter and rest, or “hospitality,” to weary and sick travelers on a long journey. In 1967 Dame Cicely Saunders at St. Christopher’s Hospice in London first applied the term “hospice” to specialized care for dying patients. Today, hospice care provides humane and compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.
The hospice philosophy accepts death as the final stage of life. The goal of hospice is to enable patients to continue an alert, pain-free life and to manage the symptoms of their disease so that their remaining months may be spent with dignity, surrounded by their loved ones. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. It provides family-centered care and involves the patient and the family in making decisions. Hospice care is given in the patient’s home, with a family member serving as the main hands-on caretaker, or in a hospital, nursing home, or private hospice facility.
“Hospices are the only health care organizations that exist to specifically care for the terminally ill,” explains Fortner. “Other organizations do it, but it’s not their main mission.”
During her twenty-five years of leadership, Fortner has seen many changes in the local hospice movement. Her first task was to promote public awareness and support for the hospice concept.
“In 1983, few people knew what hospice care was,” she remembers. “It was not reimbursed by private insurance or Medicare.”
That same year Congress passed legislation creating the Hospice Medicare Benefit (HMB). This benefit provides reimbursement for most hospice services, including needed medical equipment and medications. This was a huge change in the hospice movement across the country, and it led to an influx of for-profit organizations into the field. It also led to greater public understanding of the hospice philosophy.
Hospice & Palliative Care Charlotte Region (HPCCR) was the first hospice in North Carolina to offer the HMB in 1984. Without Medicare reimbursement, Hospice’s ability to make its services widely available would not have been possible. However, as a not-for-profit organization, HPCCR maintains its open access policy of providing care for all eligible patients, regardless of their ability to pay. It covers almost $1 million a year in unreimbursed care.
Not Just Growing Older
During the 1980’s, HPCCR grew within Charlotte, opening two offices. It initiated special children’s services, such as Chameleon’s Journey, an overnight grief camp for children and teens, ages 7 to 16, who have experienced the death of a family member or other significant person in their life.
In the ’90s, the service area was expanded to eight additional counties and Hospice of Lincoln County merged with HPCCR. A branch office was opened at Lake Norman. In 2002, the first full-time medical director was hired and palliative medicine was introduced as a new service.
“Just as hospice became a common concept, we adopted a new concept—that of palliative care,” says Fortner.
Palliative medicine specializes in the relief of the pain, symptoms, and stress of serious illness. The goal is to improve the quality of life for patients and their families. It differs from hospice care because it may be provided at any time during a person’s illness, even from the time of diagnosis. Also, it may be given at the same time as curative care. Hospice care always provides palliative care, sometimes called comfort care; however, it is focused on terminally ill patients— people who no longer seek treatments to cure them and who are expected to live for six months or less.
In 2006, palliative medicine was recognized as a medical subspecialty by the American Board of Medical Specialties. Hospice & Palliative Care Charlotte Region was the first hospice in the area to add board certified physicians to its staff to address the need for specific care for those living with serious illness. With a team of nine physicians and eight nurse practitioners, HPCCR has the largest such program in the Carolinas, and is a national leader in the field.
In 2005, the organization adopted its current corporate name, Hospice & Palliative Care Charlotte Region. Branch offices in Lincoln County and Lake Norman became Hospice & Palliative Care Lincoln County and Hospice & Palliative Care Lake Norman to reflect the ability to provide palliative medicine in those offices.
Since then, palliative medicine services have been extended to additional counties. Today, the organization serves over 1,000 patients a day with approximately 500 being hospice patients and 500 palliative medicine patients.
In January 2008, HPCCR opened the first hospice house in Mecklenburg County. Recognizing that there are times when home care is not an option, the Levine & Dickson Hospice House provides short term, high-quality, compassionate hospice care.
Centrally located within the service area of HPCCR, Levine & Dickson Hospice House sits on 12 wooded acres in The Park Huntersville. The 29,000-square-foot facility, built through a $10.7 million capital campaign, is designed in the American Craftsman style to be home-like with large floor-to-ceiling windows offering natural light, fresh air, and views of the outdoors.
Each of the 16 patient rooms is large and private with its own bathroom. There is a large family room with a beautiful stone fireplace, sunrooms on each patient wing, a library, a kitchen, and an interfaith chapel. The grounds feature beautifully landscaped gardens, welcoming benches, and a labyrinth for meditative walks.
“The opportunity to offer this level of care in a hospice facility has been our dream for a long time,” says Fortner. “While our first priority remains offering compassionate hospice care daily to hundreds of patients in their own homes, hospitals, assisted living communities and nursing homes, there are times when this is not an option. Being able to offer an alternative will make a big difference. It is a wonderful addition to our services.”
Levine & Dickson Hospice House was planned with future expansion in mind. This expansion is part of the organization’s response to the continued demand for its services.
“The increase we are experiencing in referrals to our programs tells us that the community needs our growth and vision,” says Fortner. “As the baby boomers grow older, they are going to demand choices and will want to be in charge of their own care. That’s what hospice is all about.”
There are other challenges ahead for Hospice & Palliative Care Charlotte Region. One of these is the federal government’s plan to cut its Medicare hospice budget. While it may not make sense to reduce access to a program that, by Medicare’s own studies, actually saves Medicare dollars by keeping people feeling better and out of the hospital, it is also true that the numbers of those in need are rising dramatically. Medicare’s hospice budget has grown as people live longer and increasingly choose hospice care.
The Hospice Medicare Benefit has proven to be extremely cost-effective for care during the last six months of life. An independent study by Duke University showed that hospice saved an average of $2,300 per patient, or nearly $2 billion each year, and close to 100 percent of families who used hospice would recommend it to others. In addition, the Duke study showed that, on average, dying patients who received hospice care lived 29 days longer than those not receiving hospice care.
The scheduled cuts in Medicare funding will likely result nationally in reduced patient access, program closures, and less money to care for patients. These cuts come at a time when the cost of providing care is rising. Because most hospice care is provided in the patient’s home, HPCCR clinicians travel over a million miles per year. Rising gas prices have placed a new burden on the organization, coming on top of rising costs for pharmaceuticals, supplies, equipment, and hiring and training health care professionals.
Despite its phenomenal growth, and the challenges it faces, Hospice & Palliative Care Charlotte Region has impacted the lives of thousands of area residents by providing the best and most comprehensive care for individuals facing a serious or terminal illness. Fortner is grateful for the opportunity to make a difference in those lives.
“Knowing you are providing help for someone who really needs it, is the most fulfilling and rewarding job you can have,” she says.