The Gift of Goodbye
Caroline Kirk was only 9 in October 2007 when she died comfortably in her living room, by a window overlooking her yard. Her parents, Alison and Doug, were on either side of her, holding her hands.
Although they lost their first-born child, her parents were comforted that she died at home, surrounded by the people and things she loved.
“She felt as safe and loved and secure as anyone could feel,” Alison said. “I can’t imagine how it (her death) could have been any better for her or for us.”
The Kirks were helped during the last months of Caroline’s life by Nashville’s Alive Hospice, founded nearly 35 years ago by two Vanderbilt physicians. The non-profit organization helps support Middle Tennessee’s terminally ill patients and their families.
Diagnosed with Niemann-Pick Disease when she was 5, Caroline was a “verbally precocious” little girl who liked books, hearing her father play the guitar on her front porch, and serving her parents “ice cream cones” made from sand, rocks and twigs by her backyard playhouse.
Caroline started showing the neurological signs of Niemann-Pick when she was 3, but wasn’t officially diagnosed at Vanderbilt until she was 5. The rare genetic disease, which affects the body’s metabolism, affects only about 1,200 individuals in the world. Caused by the deficiency of a specific enzyme, there are three forms of the disease. With Type A, most children die between 2 and 4. With Type B, they can live until early adulthood. Caroline had a combination of A and B. Her 8-year-old sister, Kate, also has the disease.
Caroline’s first symptom was clumsiness. “She started having trouble with ballerina twirls,” Alison remembers. She soon lost the ability to walk and talk, but kept her penetrating gaze and sense of humor. “She loved to be outside, the wind in her face,” Alison recalls. “Her home was her refuge, the center of her little world.”
Pets, families and backyards
The concept of hospice care was only an idea on paper in 1959, the year John Flexner, M.D., joined the Vanderbilt faculty and began teaching hematology to medical students. At that time, most terminally ill patients died in hospitals.
That same year, British physician Dame Cicely Saunders published a paper laying the foundation for her vision of a modern hospice, an organization that provides physical, psychological, social and spiritual care for dying persons, their families and other loved ones. Eight years later Saunders opened the world’s first modern hospice in London, St. Christopher’s Hospice.
At Vanderbilt, Flexner and colleague David Barton, M.D., wanted to teach students not only the physical aspects of caring for a dying patient, but the emotional and spiritual as well. The subject was tacked on to the end of lectures, but then became a complete course, “Death, Dying and Bereavement,” taught to a multidisciplinary group of students. Students often told the pair it was their favorite course.The hospice movement made its way slowly across the Atlantic Ocean, and in 1975, a year after the first hospice in the United States opened in New Haven, Conn., Flexner and Barton led an interdisciplinary group of community physicians, nurses and individuals and founded Nashville’s Alive Hospice.
“The worst thing a doctor can say is ‘I’m sorry. There’s nothing more I can do for you,’” Flexner said. “That’s nonsense. Hospice picks up at the end of that sentence and says, ‘There’s a lot we can do for you.’”
The Nashville group met at Barton’s home in West Meade on Dec. 18, 1974, to discuss forming the hospice. The Nashville initiative started slowly. Initially, Alive Hospice provided care to patients in their homes only, but in 2000 they added inpatient care to their services, opening Middle Tennessee’s first freestanding hospice facility, the 30-bed Alive Hospice Residence Nashville. It continues to serve Davidson and 11 surrounding counties.
“People usually want to die at home,” Flexner said. “They want their pets, their families, their backyards.” But when they are unable to remain in their homes, Alive Hospice offers inpatient care in a homelike environment where patients’ pets can even visit, he said.
You might not know what you need
A common misconception about hospice care is that it’s for the last days of life, and that care is provided only for the actively dying patient. In fact, some patients with a limited life expectancy can begin receiving hospice care several months before death. Their family members are also helped through psychosocial and spiritual support.
When the Vanderbilt palliative care team first referred the Kirks to Alive, Caroline had recovered from a hospital stay with pneumonia, but was still gradually declining. “In fact, I met the people on our team and said, ‘We’ll call you when we need you,’” Alison remembers.
Jennifer Rowe, the Alive nurse assigned to the Kirks, visited weekly to assess their situation. She was able to get to know Caroline and her family in a calmer time before a crisis occurred.
Amy Stapleton, an Alive social worker assigned to the family, noticed how Caroline’s parents had to lift her into the house. She enlisted the help of a group of students on an alternative spring break to build a wheelchair ramp at their home. “They keep an eye out for you and what you might need, because you might not know what you need,” Alison said.
The social worker was also at ease discussing topics that most parents aren’t ready to face, like planning a funeral and choosing a cemetery. “Some people think you are morbid, but Amy understood that this was something we could control. We wanted time to think it through, when we weren’t in a crisis.”
The brains and whip
Since its inception, more than 36,000 individuals, the majority through home visits, have been helped through Alive Hospice, said Jan Jones, president and CEO. Over the past decade about 5,800 patients have been cared for at the Alive Hospice Residence Nashville.
Grief support is offered free of charge to those who receive Alive services, and others are charged according to ability to pay.
Initially, Alive Hospice was entirely a volunteer organization dependent on the community for support, Jones said. The early days of the organization were devoted to cataloguing already existing community services and developing the program’s direction.
“David Barton was the brains, and I was the whip,” Flexner said. “I said, ‘look this is absolutely ridiculous. We are not doing a service.’ We didn’t even have a director.”
Iris Kozil came aboard as Alive’s first full-time director, and the organization was off and running. She spent her time out in the public, raising money and awareness for the organization. “She got this whole thing off the ground,” Flexner said. “She got our patient count up, established our notoriety. She was a dynamo.”
In 1983, Medicare began offering a hospice benefit that paid for physician services, nursing care, social work and spiritual care. The organization still relied heavily on its volunteers, but was able to add full-time physicians, nurses, social workers, chaplains and aides to its staff.
“Now we had a resource for the care we gave,” Jones said. “The Medicare hospice benefit incorporated all of the original ideas our founders had with the exception of research and training. It recognized spiritual support and that the unit of care is both the patient and their family. That’s unique.”
The organization’s volunteers, however, remain critical to its success. They help provide respite to family members caring for a dying family member at home, and some are more comfortable working in the organization’s office on Patterson Street. Other volunteers have specific skill sets to offer – pet therapy, doing hair or massages, or sewing. Volunteers must go through a training program and submit to a background check and interview.
Jones said that families are beginning to talk more openly about death, but there’s still room for improvement. “People need to know what their options are and need the tools to make decisions. It’s an age-old issue, and it’s going to take some time to move the mountain. We’re there to help,” she said.Alison Kirk said as Caroline weakened and had another hospital stay for pneumonia, they chose to focus on quality of life with the help of Alive Hospice instead of life-extending care. “She wasn’t happy in the hospital. It drained her spirit. We knew she wasn’t going to recover in any significant way.”
So in July 2007 her parents relocated her to a pillow-covered futon in their living room. They took her on walks through the neighborhood in a large stroller equipped with an oxygen tank. She loved to look out the window and to gaze at some lighted spheres that hung from the ceiling.
“It was in many ways a peaceful time,” Alison said. “There aren’t too many times in life that you have an absolute clarity of purpose. I knew that mine was to be with Caroline, to help her as much as possible.”
For two months, the Alive Hospice team gently helped prepare Caroline’s family for her death. “That’s one of the most valuable things they did for us. It (dying) is a natural process, what her body was programmed to do. As parents it’s so ingrained in you that you have to intervene. But her body knew what it was doing. We were along for the ride.”
This is exactly the vision that Flexner and Barton had for a hospice program for Nashville. “Those two gentlemen had such tremendous foresight and vision,” Alive’s Jones said.
Flexner and Barton say that founding Alive Hospice was among their most important accomplishments. They both remain on the organization’s advisory board, and Barton is writing a history of Alive. He has also experienced first-hand the organization that he co-founded. His wife’s 95-year-old mother, Hannah Palmer, died last September under Alive’s care.
“It was a wonderful experience to see what we put together functioning so well. She received some of the best care I’ve ever seen in my life. The ability to give comfort is so very, very important to me.”
Flexner agrees. “I’m an academician,” he said. “I haven’t done any great research, but I’ve been a real good, caring, warm, loving physician. I’m loud and boisterous. I’m demanding. But this (Alive Hospice) was my contribution.”
Each spring Alive Hospice hosts butterfly releases and invites the community to participate. Butterfly releases, which are an Alive Hospice tradition, offer a way to celebrate the memories of loved ones. Participants also are invited to release butterflies in honor of cherished family and friends who are still living. For more information, please visit their website at www.alivehospice.org.