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ALS patient on hunger strike over home care

Posted By CAROL MULLIGAN, THE SUDBURY STAR



A desperately ill Sudbury woman heralded as a champion -- athletically and of human rights -- is entering the sixth day of a fast to end her suffering and her life.

Minna Mettinen- Kekalainen, 42, has fought for years to keep amyotrophic lateral sclerosis (ALS) from preventing her from doing the things she loves -- skydiving, rowing and raising two children.

But she no longer has it in her to fight a provincial organization she says is refusing to help her when she is at her weakest.

Mettinen-Kekalainen is alone, bedridden or confined to a wheelchair, unable to change her adult diapers or bathe herself, and in constant pain.

Her only source of nutrition is the feeding tube in her stomach, but she is refusing to let friends administer the four cans of supplement she should be receiving daily.

Once the subject of newspaper articles about her indomitable spirit in coping with ALS and a role model for people raising autistic children, Mettinen-Kekalainen (who also suffers from Asperger Syndrome, an autism spectrum disorder) is not receiving home care.

She says it's being denied by the North East Community Care Access Centre because she complained about nurses contracted by the organization whom she claimed were not following her doctor's orders.

The centre is unable to comment on Mettinen-Kekalainen's case specifically, but maintains it doesn't deny care to anyone who needs it -- provided the home environment in which it is offered is "safe." Safe, said executive director Richard Joly, includes being free from harassment and abuse.

Mettinen-Kekalainen told The Sudbury Star last week she threatened to report the nurses to the Ontario College of Nurses because they were not giving her the care her doctor ordered.

She and friend Jason Bushie say the nursing agency and the Community Care Access Centre have deemed that harassing behaviour.

The truth in the dispute may never be known. What is evident is that Mettinen-Kekalainen seems destined to spend her last days in living conditions that would be considered unfit if a dog were subjected to them.



Bushie said his friend, whom he met 18 months ago at the Sudbury Rowing Club, just wants to die. He said she has been promised nursing care, but is being told there are no nurses to provide it.

She hasn't had a bath in months, her diapers go unchanged for weeks and "Minna's just given up," said Bushie. "She's hit her wall."

Among her many problems is that Mettinen-Kekalainen dearly misses her children.

Her son, 18, left home because he couldn't cope with her illness. And earlier this month, Mettinen- Kekalainen sent her 16-year-old daughter to live with relatives in Vancouver because she was afraid the child would get up one morning and find her dead.

Bushie said he's shocked at how his friend's health has declined in the last month or so. He's even more surprised that news stories about Mettinen-Kekalainen's condition a week ago have not resulted in her receiving help.

"This goes beyond disgusting," Bushie said. "We send peacekeepers to other countries to help people living in conditions like hers."

Nickel Belt MPP France Gelinas calls Mettinen-Kekalainen's story "heart-wrenching."

She listened to it online at http://ca.youtube.com/user/SudburyCCACexposed, where Mettinen- Kekalainen is chronicling her fight with the centre and her last days in video.

Gelinas, the NDP's health critic, said judging from those videos, Mettinen-Kekalainen "is a person of integrity. She's very strong and courageous."

She is also someone who needs home care and should be receiving it.

"Our home care system is broken," said Gelinas. "It needs to be fixed."

She blames for-profit nursing agencies contracted by North East Community Care Access Centre for siphoning money from client care to their bottom lines.

"As long as we have competitive bidding that puts profit ahead of people's needs, we're going to have a broken system," Gelinas said.

Bob Fera, former chair of the Manitoulin-Sudbury Community Care Access Centre, fought the province for years over funding cuts to home care services.

Now retired, Fera was contacted in Florida where he is spending the winter. If Mettinen-Kekalainen is being denied care because the centre can't find nurses to tend to her, "that's not acceptable," said Fera.

And just because a client is difficult shouldn't affect whether they receive care.

"You treat the need, not the person," said Fera.

Hard-to-service clients such as Mettinen-Kekalainen are becoming "more the rule than the exception," he said. If they were in hospital, they would be cared for regardless of how difficult they were.

But Joly maintains there are limits in hospitals and long-term care residences to the harassment and abuse to which employees are subjected.

"We are letting them die," said Fera of hard-to-service clients.

"For many of them, if they don't have family, they're dead."

Mettinen-Kekalainen has contacted the Sudbury MPP Rick Bartolucci's office, looking for help. When contacted Friday, an aide to Bartolucci said he was not available and suggested calling the media line for the Ministry of Health and Long-Term Care for comment.

A Health ministry media spokesman said he could do no more than provide information on how much money Dalton McGuinty's Liberal government invests in home care in the northeast. That information had not arrived by the end of business Friday.

Mettinen-Kekalainen told The Star last week her last hope was gaining admission to Maison Vale Inco Hospice, where she could spend her remaining days in comfort.

In an e-mail to The Star on Friday, Mettinen-Kekalainen said her request has been rejected because there is no telling how long she will live, despite her condition. Most people admitted to the hospice die within 10 days, and she could live for months.

Mettinen-Kekalainen said she expects it will take three weeks to die of starvation.

"I need to go and get some peace," she said in the e-mail. "I am continuing my hunger strike until I receive that peace."



http://www.thesudburystar.com/Articl...aspx?e=1392830