One memory sticks out to Margie Thompson from her time volunteering with Hospice of the Valley in Decatur, Ala., –carrying bucket after bucket of blood from a hospice patient’s bedside.
In a bright, airy sun room, a middle-aged woman lay in her home in the hospital bed that would house her until her death. She was throwing up blood while a hospice nurse sat by her side.
“It was really horrible,” Thompson said. “She was completely coherent. Normally they give patients morphine to calm them and help ease the transition, but she refused.”
The woman suffered from colon cancer, and the time had come for the family to come in and say goodbye.
“The family has to give permission for the patient to die.” Thompson said. “She needed to hear it because the will to live is too strong. The nurse coached them on exactly what to say.”
That is what hospice does: It strives to help dying patients transition into death as peacefully as possible. Hospice is a service offered to terminally ill patients often with a six-month life expectancy prognosis. To be admitted patients must be no longer responsive to cure-oriented treatments.
The focus of hospice is on caring, not curing. They provide the terminally ill and their families medical care and both emotional and spiritual support tailored to the patient’s needs and wishes. According to Hospice Of West Alabama’s website, hospice relies on the belief that a person has a right to die pain-free and with dignity, and that his or her loved ones will receive the necessary support to allow the patient to do so.
The National Hospice and Palliative Care Organization, a nonprofit membership organization representing hospice and palliative care programs and professionals in the United States, reported an estimated 1.65 million patients in the U.S. who received services from hospice in 2011, and approximately 44.6 percent of all deaths in the U.S. were under the care of a hospice program. According to NHPCO, the first program opened in 1974 and more than 5,300 exist today.
Even on a gray day, HOWA is unexpectedly uplifting. Large windows let light into a foyer, where a volunteer receptionist, like Gladys Ritchie, greets visitors with a smile and points them in the right direction.
Ritchie, affectionately known as “Trouble” among her co-workers, has been volunteering with HOWA for more than 10 years. HOWA needs volunteers like her to provide its service.
HOWA is located on the campus of the Tuscaloosa Veterans Affairs Medical Center, and a staff of 85 serves seven counties in West Alabama. The Helen H. Hahn House, HOWA’s home, looks out on the tranquil scenery of the central courtyard, complete with a pond and gazebo.
Kimberly Gibson, volunteer coordinator for HOWA, said the majority of hospice care is provided in the place the patient calls home, but HOWA is one of three hospice providers in the state that has an inpatient unit.
The 10-bed HOWA inpatient facility, located in the Hahn House, offers homelike spaces for the patient and family. Each room has a full bath and a shared screened-in porch. These porches are patient-accessible, with French doors that open wide enough for a bed to be wheeled out onto the porch. The chairs in the room convert into sleepers for family members who want to stay the night.
“We tried to think of any obstacle that would keep a family member from being able to be here,” Gibson said. “The inpatient facility also features a chapel for quiet moments, as well as gathering places for patients and families.”
The comfortable environment provided by HOWA’s facilities supplement the care given by the staff and volunteers.
Holly Mason, a UA graduate student working on her master’s in social work, currently interns with HOWA, and worked as volunteer before that. She said she began volunteering with HOWA after someone from a hospice group spoke to her health psychology class.
“I thought hospice care was a really worthwhile service and wanted to get involved,” Mason said. “My favorite part about it has been getting to know the patients. As a volunteer, I visited patients. It gave me good perspective to talk to them. I got to hear a lot of stories about their lives.”
Additionally, Mason said she enjoys getting to know the patients, seeing pictures of their families and building relationships.
“Hospice workers are not hired, they are called,” Gibson said. “That is very true of our staff. Hospice has to be something you are passionate about.”
For Laura Graham, an RN for Hospice of North Alabama, getting to know the family was one of her favorite parts of her job as a hospice nurse. Graham’s said it was also the most challenging – getting to know her patients and their families.
“When you lost a patient, you also often lost the family too,” she said. “Understandably, many families don’t really want to keep in touch, but I met a lot of people I never would have met otherwise and I loved that.”
Graham, from Decatur, Ala., worked as a hospice nurse for Hospice of North Alabama for two years and an administrator for three years. As a nurse, she was assigned between eight and 10 cases. Graham spread her visits out during the week, starting with visiting her patients just a couple of times a week, but increasing the visits as death became more imminent.
Graham worked to make the patient more comfortable while educating both the patient and family on the transition process. She spent a lot of her time simply listening to her patients, too.
“The family members go through the five stages of grief, but so did the patients,” Graham said. “They talk a lot, reliving their lives, and so they often just needed someone to listen.”
The relationship that develops between an RN or volunteer and the patient and family can also be a lasting and special bond. For Diane Wiley, getting to know one of the RNs who helped with the care of her mother was meaningful.
“We just loved her to death,” Wiley said about the weekend nurse assigned to her mother’s care. “She was absolutely wonderful. She became like a member of our family.”
Wiley said only she and her sister were present when their mother passed away, but immediately after she died, Wiley called the RN.
“She was offduty,” Wiley said. “But as soon as I called she came.”
The nurse handled all the paperwork for Wiley and her sister.
“My mother was so ready to die,” Wiley said. “She was ready to go be with the Lord. She would go in her room and turn on Christian music and tell us she was going to die right there in that bed.”
Nurses play a large role in caring for patients and families, but another big part to hospice care is the volunteers. Gibson and Wells both attested to the importance of volunteer help at HOWA.
“We have the best volunteers of the area, and that makes my job amazing,” Gibson said.
Volunteers go through intensive training, and their jobs include sitting with patients, providing companionship or offering relief for caregivers and much more. They also run errands, like going to the bank or grocery store.
Volunteers are also involved in other ways outside of patient care. They make flower arrangements, help keep HOWA’s kitchen stocked, work as receptionists, and Gibson said they are important for fundraisers.
“Volunteers are vitally important to the success of fundraisers, like our Fourth Annual Family 5k Run and Walk event,” she said.
This year, the run was held at Munny Sokol Park in March and proceeds went to benefit patient care at HOWA.
As a volunteer, Thompson had the opportunity to build relationships with families and patients. One of her first experiences with hospice was the woman with colon cancer.
“When I think of hospice, every nurse I saw was so soothing, caring and calming,” Thompson said. “The nurse stayed with [the woman with colon cancer] the whole time.”
The woman had two daughters in high school. One daughter went in to say goodbye and one refused initially. As the woman neared the end of her life, her breathing became shallow and gasp-like and the second daughted relented.
Tears streaming down her face, the daughter looked at her mother face to face for what would be the last time, Thompson said.
“I love you, Momma,” she said to her mother. “Please go be with Jesus.”
Holding her daughter’s hand, the woman gathered what was left of her strength to respond.
“I love you too,” she said. Within a few minutes, she died.
“It was as if she was waiting to see her daughter before she went,” Thompson said. “She needed the closure before she could go.”
Hospice of West Alabama, in addition to numerous volunteers, has 85 employees and serves hundreds of patients annually in Tuscaloosa, Pickens, Fayette, Lamar, Hale and Bibb counties. The majority of their patients are usually seen at home. The inpatient unit, which has 10 beds, has a waiting list and admittance is based on the patient’s prognosis. The wait would vary on availability and the patient’s need for care. HOWA is a nonprofit organization. Payment for hospice care comes from Medicare, Medicaid and most private insurers. Contributions from the community via United Way, fund raising, memorial and general donations help provide care to provide care to patients who have no health care coverage or have needs not covered by their insurance.