Hospice provides dignity in death - Catholic Courier

Hospice provides dignity in death

By late summer, Hornell resident Arbirta Damrath knew something had to change. The 84-year-old was plagued by terminal health problems, and even getting up in the morning was becoming too much of a challenge, she said.

“I was living alone and it was hard,” she said. “My kidneys were going and they weren’t getting any better and they won’t get any better.”

Things started looking up for Damrath on Sept. 3, when she moved into The Vincent House in Wayland, a two-bed comfort-care home for the terminally ill. She is never alone at The Vincent House, which is staffed by volunteers from 8 a.m. until midnight, when an overnight caregiver takes over. Meanwhile, there’s also a registered nurse on call 24 hours a day to attend to the residents’ medical needs, said Kim Snyder, the home’s executive director.

“It just seemed like the right place. I think it’s wonderful. I have help. I don’t have to worry about anything,” Damrath said.

Hospice-care concept

Located in the former convent of St. Joseph Church in Wayland, The Vincent House is one of more than a dozen comfort-care homes within a 100-mile radius, Snyder said. Each nonprofit, two-bed home serves terminally ill residents with prognoses of three months or less to live and who can no longer stay in their own homes, Snyder said. The care is provided free of charge. These homes differ from larger hospice facilities, which have more than two beds, may bill for services and must follow government guidelines, she noted, but they do provide similar care.

The word “hospice” does not refer to a place, but rather a concept of care, according to the Hospice Foundation of America. British physician Dr. Cicely Saunders began the modern hospice movement in the 1960s when she founded St. Christopher’s Hospice near London. The first hospice in the United States was founded several years later in New Haven, Conn., in 1974. Currently more than 3,200 hospice programs operate in the United States, Puerto Rico and Guam.

Hospice care is specifically designed to provide comfort and support to patients and their families when a life-threatening illness no longer responds to cure-oriented treatments, according to the Hospice Foundation of America. This type of care neither hastens death nor prolongs life, but rather aims to improve the quality of a patient’s last days by providing that patient with comfort and dignity.

Professionals, volunteers and family members often work together to provide this type of care, addressing all disease symptoms while placing special emphasis on managing the patient’s pain, according to the foundation. Hospice-care workers help the patient and family members deal with the emotional, social and spiritual effects of the patient’s disease, noted Annette Gibson, home-care manager for Southern Tier Hospice and Palliative Care.

Eighty percent of hospice care is provided in a patient or family member’s home or in a nursing home. In the remaining cases, hospice care is provided in a facility dedicated to that type of care, according to the Hospice Foundation of America.

At least 14 agencies provide hospice care within the Diocese of Rochester’s 12 counties, according to the Hospice and Palliative Care Association of New York State and www.hospicedirectory.org. One of these agencies — Visiting Nurse Service of Rochester and Monroe County — recently partnered with St. Ann’s Community in Irondequoit to open a five-bed inpatient care center for patients in need of short-term hospice and palliative care.

The new Palliative Center for Caring opened on the St. Ann’s campus in July 2007, and since then the center has served more than 160 patients and their families. The center provides acute pain, symptom and crisis management, and boasts a round-the-clock nursing staff, Betty Mullin-DiProsa, St. Ann’s president and chief executive officer, told the Catholic Courier.

Southern Tier Hospice and Palliative Care is among the agencies that do not operate hospice facilities, but rather work with patients who have a prognosis of six months or less to live and are receiving care in private homes, nursing homes or comfort-care homes, including The Vincent House. Gibson, a registered nurse, typically maintains a caseload of eight to 12 patients and their families, serving as a vital link between the patients and families and the patients’ physicians.

Southern Tier Hospice and Palliative Care also coordinates visits from social workers and spiritual-care workers. The agency emphasizes patient and caregiver support, and help is always just a phone call away 24 hours a day, Gibson said.

“There’s always a registered nurse that they can call at 2 or 3 in the morning. There’s always somebody that can come out,” she said.

Patients sometimes begin receiving hospice care in their own homes or those of family members, and eventually move into comfort-care homes as their conditions deteriorate, said Sandie Ville, president of the board of directors for Aurora House, a two-bed comfort-care home that is being planned in Spencerport.

“Generally the homes accept at (a prognosis of) three months or less because that’s generally when the need is the greatest. That kind of phase of it is generally when the care gets a little more involved and when the families can use the help,” Ville said.

Ville and her fellow board members have raised more than $106,000 in the past year and hope to build and open their facility sometime in 2009 on a plot of land donated by Spencerport’s Ogden Presbyterian Church. All of the area’s churches, including St. John the Evangelist Parish, have been ardent supporters of the project thus far, Ville said.

Dying with dignity

Likewise, many of the volunteers who staff The Vincent House are members of Holy Family Catholic Community in Wayland, Dansville, Cohocton and Perkinsville, Snyder noted. One such parishioner is Connie Hurlburt, who has been volunteering at the Wayland home since it opened in 2002. Before that she volunteered at Teresa House, a similar home in Geneseo where her mother spent her last days.

“You find that (a comfort-care home) is a place you never want to need, but it’s a fantastic place,” Hurlburt said.

Hurlburt’s personal experiences with terminally ill family members help her relate to the home’s residents and their family members. Experienced volunteers such as Hurlburt are able to walk residents and their family members through the dying process, which family members may be experiencing for the first time, Ville said.

“These homes are filled with people that are experienced with this process and know what to expect. These homes are to the dying process what midwives are to the birthing process,” she said.

The emphasis at hospice homes is not placed on death and the dying process, however, said Carole Jensen, director of House of John comfort-care home in Clifton Springs. House of John staff and volunteers treat residents with dignity and respect and try to meet all of their residents’ needs and wants, said Jensen, a registered nurse. Staff and volunteers take residents on field trips, sit with them on the porch and play games with them.

“We listen with our ears and our hearts. We cry and we laugh,” she said. “Our residents do not come here to die. They come here to live the rest of their lives.”

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