Offered by the Central Community Care Access Centre, the program provided a caseworker, personal support workers for eight hours every day, and medical equipment including a special bed, an oxygen machine, a wheelchair and a lift, so Landry could live her final days in the comfort of her niece’s home.
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Her niece Charlene Dunlevy took care of her the other 16 hours of the day. “She’s good to me,” Landry says.
The only problem is a bittersweet one: Because Landry survived beyond the program’s 90 day funding period, she now faces reductions in care and uncertainty about the medical equipment.
Landry has cervical spinal stenosis and extensive nerve damage and lives with her niece in Lisle, Ontario, outside of Alliston. Lying in bed, she can manage a small squeeze of her hands, and with effort, a little movement in her arm.
Because of her condition, the bones in Landry’s neck are getting tighter, pinching her nerves. She is losing the power and sensation in her extremities, her voice is becoming weaker. She has difficulty swallowing, chokes often, and has problems breathing. She can’t move her limbs.
“I want to get out of bed,” she says as the air hums on its way through the special mattress. “The doctors tell me, ‘You’ll never get up again.’”
Home First is meant to divert elderly patients from long term care facilities after they are discharged from the hospital following an “acute episode.” The idea is that at-home support can eventually be lessened after the patient improves, or, it will give families 90 days to decide to transition into another form of care, like a long-term care home, which Landry does not want to do. Central CCAC has offered the program since 2009, and 1,713 clients have gone through it. The average 60-day stay (many transition out before 90 days) costs the ministry $10,500.
Born the fourth youngest in a family of seventeen children on Christmas Eve 1927 in New Brunswick, Landry is the last of her siblings. She is lucid, and on her good days, spunky and bright, with nails painted pink by a caring personal service worker. She wants to sit in the gliding rocking chair at the bedside, but she can’t get there. Her condition is terminal — but it is difficult to predict how much longer she will live. Her doctor says there is a prognosis of death in the next few months.
When the 90-day deadline was looming in August, Dunlevy says she was told that the bed would not be removed, but later she was informed all the equipment would have to go, and support would be reduced to three hours a day.
Dunlevy was told she could rent equipment and hire personal support workers. But the family can’t afford either option.
“I’m glad she didn’t die in three months. I hope she has many years to come,” Dunlevy said.
When reached by the Star on Friday, Cathy Szabo, the chief executive officer of Central CCAC, said that after 90 days, clients can stay at home, but the government does not fund the same level of service — legislation and regulations dictate that the CCAC can only provide up to 21 hours of care a week.
She said Landry could remain in the home with reduced care supplemented by hospice and other community organizations. She said equipment from volunteer services has been offered to the family, but if the needs exceed that, Landry could choose a long term care facility. She also noted that if Landry deteriorates, “we will restore service levels.”
Szabo said there was no intent to remove the hospital bed although “we did have conversations with them about how to secure additional equipment going forward in the future.”
She said to remove a hospital bed from a person who came into the program in her final stages of life but has now stabilized would be “cruel and mean.”
“We’re not about that. We aren’t going to take out the bed until there is another plan, if there is another plan for that bed,” she said.
Szabo said her staff had reported that certain equipment wasn’t in use, and that was the equipment that was going to be removed so other patients could use it.
“That is what we offered to take out of the home.”
The family says that isn’t the case — sure, they are not able to put Landry in the wheelchair on some days if she isn’t feeling well, but they try to get her out of her bed as much as they can and need the equipment to do that.
“I would give it to someone if we weren’t using it,” Dunlevy said.
They say the only equipment that has been offered is a medical bed from a local resident. While they are grateful, the mattress does not have air circulation like the CCAC bed and Dunlevy is worried Landry will have bedsores from “head to toe” because of her extremely limited movement.
When asked if the additional equipment was scheduled to be removed, Szabo said, “Not as far as I know.”
“We do need the family to work with us to help us get the right plan and care for the patient, if this lady stays at this same level for two years — and someone else does need the bed, and they just say, ‘No we’re not going to work with you guys we’re not going to make any plans with you,’ that is a very difficult situation. We only have a certain amount of money every year for medical supplies and equipment and that means somebody is on a wait-list for the bed,” Szabo said.
Landry’s palliative care doctor Monique Moreau, sent a request for “ongoing services” to the CCAC in August, and wrote a letter to local health authorities and health minister Deb Matthews on September 13, stressing that staying at home was the best option for Landry and the province’s finances.
Moreau did not get any response — and an email she sent on Monday to the CCAC went unacknowledged. On Friday, after the Star contacted the CCAC about the situation, Moreau received a phone call.
Moreau was told that Landry and her niece misunderstood about the removal of the equipment.
“I don’t think two people can misunderstand that much,” she said.
Moreau was told a case manager was going to visit the family on Monday to review the situation. Moreau believes that supplementary care from volunteers from a hospice will not be enough because those services only offer companionship.
Dunlevy, who works through a temp agency, has stopped working to care for her aunt. Now that service is being reduced further, she cannot return to work.
“I won’t have a choice, I can’t leave her alone. They’re putting us in a predicament,” she said. “I don’t know how we’re going to survive, but we will.”
Moreau, a former board member of the Central LHIN, understands the financial strain on the province.
“It’s not like we’re going to save the health care system a whole lot of money, unless the niece keeps her at home and quits her job and pays for everything,” she said.
Dunlevy says she understands that the CCAC’s hands are “probably tied because they don’t have the money,” but feels that the ministry needs to consider this problem.
Dunlevy and Landry are worried about the uncertainty ahead. For now, Landry can only lie in bed and wait, looking at the small Virgin Mary statue atop the television set.
“Pray for me,” she says. “I’m praying, but she doesn’t do too much.”
UPDATED: THERE HAS BEEN AN UPDATE ON THIS CASE AFTER THE TORONTO STAR COVERAGE AND PUBLIC OUTCRY. CLICK HERE TO READ THE UPDATE.