Compassionate care at the end

A Story by Renee Baker, Dallas Voice, July 23, 2009

Hospice offers options to let the terminally ill die with dignity, and to lift some of the burden their loved ones often shoulder

When a social worker came to John Steele about placing his dying mother in hospice care, he thought it meant they wanted to pull the plug on her lifeline. He thought it meant they would take her off all of her medications and all of her life support.

John Steele

Steele thought it meant they wanted to just let her die, but “I wasn’t ready to lose my mother,” he said.

But now Steele says he was wrong. He said not only did hospice improve the quality and longevity of his mother’s life, but it changed his entire life career.

Steele, a former theater director, became such an advocate of hospice care that he has become an educational spokesperson for the Autumn Journey Hospice agency. He is also now the head of the Grief Support Ministry at Cathedral of Hope in Dallas.

Hospice care is an end-of-life care, palliative in nature, provided by health professionals and volunteers. It is meant to help those who are terminally ill to live in peace and comfort while maintaining their honor and dignity.

Steele’s mother, who eventually died of congestive heart failure, had been given two months to live, but hospice extended and improved her life, Steele said, adding that within just the first month, his mother was off her bland, sodium-free diet and finally sleeping regularly.

“Within three to four months, Mother was feeling better, and though her heart was declining, she was doing better than ever,” he said.

Tom LeBlanc (L) and Jack Adams

Hospice care, while intended for those with less than six months to live, also provides much-needed relief to family members and those that care for them.

Jack Adams’ partner of 30 years, Tom LeBlanc, was at first hesitant to accept hospice care in his home.

Adams said, “Originally, Tom said no. He wanted to be independent.”

But when LeBlanc realized how worn out his partner was getting, he agreed.

Adams, a daytime bartender at the Tin Room, couldn’t be home and at work at the same time, so LeBlanc was left untended. At one point LeBlanc, who used a prosthetic leg, fell off of the couch and there was no one there to help.

Steele says family members just can’t continue being the sole source of support for their terminally ill loved ones — and they don’t have to be, since so much help is available, and often for free.

“It’s so sad that the help is there and free most of the time, but thousands and thousands are not getting the help,” Steele said.

Patients often resist getting help because they are not sure they want a stranger to enter their lives and take control of their last days. Adams said he found it to not be that way.

“They are really more like family,” he said, “and they make you feel like family too.”

Regarding control, Adams adds, “They are not in charge. You are in charge.”

Adams said that any time his partner needed an issue addressed, their hospice care providers tried hard to fix the problem. LeBlanc didn’t connect with his first caregiver, for example, so they simply “got a second one,” Adams said.

LeBlanc died two years ago from complications due to diabetes, including congestive heart failure and a subsequent lower leg amputation that would not heal.

Adams said he still misses his long-term partner, especially on holidays and birthdays, but that he was glad LeBlanc was able to die in his sleep, “with a peaceful look on his face.”

Adams said he is grateful for the care he and his partner were given and still keeps in contact with the hospice owners.

He said, “After Tom died, the nurse brought her newborn baby by so I could see it.”

Steele said that losing a loved one during hospice care is an anticipatory type grief, where one is already expecting their loved one to pass on. He said, though it is of course sad, it doesn’t have the sudden impact of losing a loved one unexpectedly.

Steele said many people think of hospice care as taking place in a nursing home, hospital or other long-term-care facility. Instead, hospice care can take place, as in LeBlanc’s situation, right in the dying person’s own home, which is often best for all concerned.

Deb Matthews, a board member at Youth First Texas, did need to use a nursing home in addition to hospice care for her father, Gene Matthews. Her mother, Evelyn Matthews was at home when her husband had a riding lawnmower accident that left him with a broken neck.

Deb Matthews said she was very satisfied with the hospice care that her father received and grateful that it took pressure of caring for him off her mother.

“They were angels, and they catered to [my father],” she said of the hospice workers.

Evelyn Matthews called the hospice workers “wonderful. … They bought him a good bed — automatic,” and “they paid for his medications, his feeding tube and his nursing care,” Evelyn Matthews said.

Evelyn Matthews said that while the hospice care was free and they never sent her a bill, the nursing home costs were $3,000 per month. The state wants you to “go broke” before they will pay for any of the nursing home care, she said. “As long as you’ve got any money, you have to pay.”

But hospice care was another matter, she said, adding that she would definitely recommend it.

“Some people don’t go along with it, because they don’t do anything to prolong your life,” Evelyn Matthews said. “But they do make you as comfortable as they can.”

When it comes to choosing a hospice agency, Steele said the important thing to do is to get references. He suggested calling family members and friends who have used a hospice care company to find out more about the quality of care their loved one received.

The Texas Department of Aging and Disability Services offers information on how to evaluate the quality of care for long-term health care providers throughout the state. The agency also suggests that those looking for services should be sure to inspect facilities and make firsthand evaluations, as well as discussing options with the patient’s medical doctor.

People looking for ways to get involved with hospice care can volunteer, since volunteers are regularly needed to sit with patients, help them with phone calls, run errands for them, or help them at home with projects such as building a wheelchair ramp or tending to the garden.

Steele said, “Hospice is all about helping people — and in those last stages, we do need permission to die.”

For more information on hospice care or to learn more about volunteering, contact John Steele online at www.autumnjourneyhospice.com or the Texas DADS at www.dads.state.tx.us.

For more on this story, see the Dallas Voice link.

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