Dying without dignity; a growing trend

CHATTANOOGA, Tennessee(WDEF) – Professional hospice care is meant to give terminally ill people an opportunity to die in comfort with as much dignity as possible. But there’s a growing trend of terminally ill people who have a tough time gaining access to hospice care because of their social-economic status.

On a warm and sunny afternoon, WDEF spoke with Amy Colette. The conversation was about her aunt, Jane Sadler. Colette described her aunt as a very positive woman who lived a fulfilling life.

"She was so happy. She was one of those people you were always happy to see. She always had a smile on her face; never complained; two daughters; two grandchildren. She was just in the prime of her life," Colette said.

But at age 51, Sadler’s doctor diagnosed her as being terminally ill from pancreatic cancer. Her family was told she only had days to survive. She was prescribe hospice care 24-hours before her death.

"But prior to 24-hours when we finally got the hospice ordered from the physician; the hospice that he had ordered told us that it was not covered by her insurance. At that point, it left our family scrambling for another hospice agency that could assist," Colette said.

According to family members, Sadler suffered in pain until she was eventually accepted into another hospice program before passing away.

"Just to see a loved one suffer for no reason at all was so upsetting for us," Colette said.

WDEF spoke to Tiffany Hobbs who is the director of operations for Avalon Hospice in Chattanooga. She said she’s fully aware of the red tape family encounter when trying to place a loved one into hospice.

"It is tough and we face this challenge quite a bit," Hobbs said.

According to Hobbs, terminally ill people who die without dignity and comfort is a growing problem that centers around health insurance, especially Medicare and Medicaid.

Medicaid will pay for long-term nursing home care. But there is a loophole many people fall into that makes it hard for them to qualify.

"You have just enough assets or funds to not qualify for Medicaid but you don’t have enough money to pay the monthly fee for room and board," Hobbs said.

Medicare covers hospice 100-percent. But that coverage is limited by time so patient must only have six months or less to live. Also, Medicare does not cover assisted living. This is when end-of-life care becomes an out-of-pocket expense.

"Some people just don’t have those funds; so if they can’t afford to go to a nursing home or they can’t afford to go to assisted living, then the only other real option is to go home," Hobbs said.

The option of going home would require a medical professional who can come to the home to provide care.

"Sometimes we do hit a roadblock where it’s very challenging because they still have to pay out-of-pocket for the hours of personal care," Hobbs said.

Hours of personal care at home does not come cheap. According to Debt.org, home hospice care can average close to $140 per day. Running into red tape makes it more enticing to consult with experts like Hobbs who deals with this problem everyday.

"We’ll exhaust every option and every resource so we try not to burden the family with that. We take that on," Hobbs said.

Despite what may seem like an uphill battle to place a family member into hospice care, there are some solutions to this growing problem. Both Colette and Hobbs said the solutions involve planning.

"If you could have an advocate; if you have spoken to a family member who can be a power of attorney or someone to act on you behalf; that would definitely be helpful because there is a lot of paperwork," Colette said.

"looking into long-term care insurance policies; seeking out elder law attorneys and estate planning; that can often be helpful to tell people how to allocate funds," Hobbs said.

But there is a segment of society that is cut off from family and funds; a segment left to die on the street or in some back-alley. That is why Sherry Campbell turned an ordinary Chattanooga home into a hospice facility for terminally ill homeless people. It’s called Welcome Home Chattanooga.

"We work with the area hospices to come in and provide the professional care. We provide the shelter; the day-to-day care; the love; the companionship and fellowship," Campbell said.

Welcome Home Chattanooga began in March of this year thanks to a three-year grant from Blue Cross Blue Shield. More than 65-volunteers help in various capacities. The home has four bedrooms that can be used to help terminally ill patients die in a comfortable setting.

"Welcome Home feels that at the end of life, everyone needs to know they matter; they’re important and that they’re loved," Campbell said.

Campbell worked at Hospice of Chattanooga for more than 11 years. She also worked at the homeless health care clinic so she’s familiar with the less fortunate dying without dignity.

"That really sowed seeds in my heart that I couldn’t ignore," Campbell said.

Her hospice is a small non-profit operation that requires a lot of help.

"We do rely on donations to keep us going through the month. But not just monetary donations; volunteers; people who come and help with care giving," Campbell said.

Experts and family members of terminally ill people agree that when it comes down to quality versus quantity of life, one thing is certain.

"If you have a terminal illness, you know there’s not much quantity; so then you focus on quality; and quality can be reached with hospice." Colette said.

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