Canada: Woman Goes on Hunger Strike After Being Denied Basic Care – Help Needed

action alert, advocacy, als, aspergers, blog recommendations, bloggers, Canada, neglect, Our News & Commentary Blog, palliative care

Yesterday, I checked the blog ballastexistenz (which I do about once a week) and found an urgent plea from Amanda Baggs regarding a friend in dire straits.

The urgent plea dealt with a friend, living in Sudbury, Ontario. Minna Mettinen-Kekalainen is 42 years old. She has aspergers and ALS. She needs daily care and support for basic physical needs – such as bathing and getting her adult diapers changed. Minna isn’t getting that care.

Driven by sheer despair and exhaustion over living without needed support, she went on a hunger strike, refusing to let friends give her the nutritional supplements she needs to live.

Her story was told – badly, in places – in the Sudbury Star.

Obviously, I didn’t blog about this yesterday. Like many other individuals, I decided to heed Amanda’s plea:

But I have a request for anyone with any power to do anything about this:

Don’t get bogged down in how sad you feel about what is happening. Don’t — if you can do anything more — just write about this. Don’t treat her death as the only inevitable conclusion in all this. Find a way to pressure the right people until Minna gets her services back, free of abuse/neglect and free of coercion to avoid reporting abuse/neglect.

You might not believe it can work, but it can — I’ve done it. This is someone’s life here and something can be done. I know because I’ve put pressure like this on agencies myself on behalf of others — and a hospital suddenly started providing appropriate care to one person, a home nursing agency started providing appropriate care to someone else. (This is a lot of what I do when I’m not on the Internet.) Often what they need to know is that you are watching and that the consequences for them of not providing appropriate care will be worse than the consequences of providing appropriate care. They won’t necessarily do this for any of the right reasons, but find a reason for them to do it and then put as much pressure on as you have to.

A lot has happened over in less than 24 hours. There has been increased pressure on the agencies involved to give Minna the support and care she needs and deserves. Some students have organized a protest on her behalf.

Importantly, for now, at least, Minna is encouraged enough to have ended her hunger strike. I have exchanged a few emails with her and so have others.

That doesn’t mean we can let this rest, though. Unless she gets the support she needs, she’ll surely be right back where she was. Some terrific folks have put together some tools and suggestions to help change this situation.

Andrea Shettle at ReunifyGally has put together a great list of suggestions and resources for helping in this effort. I am reproducing it here at her open invitation which is included at the end of her blog post:

We in the disability human rights community have an opportunity to save a life. A quick summary: a woman with disabilities in Sudsbury, Ontario, Canada (Minna Mettinen- Kekalainen) is SUPPOSED to be receiving home care services. The North East Community Care Access Center has been denying her these services. Minna says this is because she had complained about their nurses because they had failed to follow her doctor’s orders. Minna was on a prolonged hunger strike, starving herself to death in an attempt to pressure the CCAC to provide her the services she needs. She has started eating again, at least for now. But she is still being profoundly neglected. Please take a few minutes to support efforts among disability rights activists to save her life.

1. First, read more about the situation at the following two links. You will also want to read the comments that people have left, because people are using the comments area at this blog page to exchange more information and ideas on how people can help: http://ballastexistenz.autistics.org/?p=572 and http://ballastexistenz.autistics.org/?p=573

2. Send an email to the following people to urge them to intervene on Minna’s behalf so she can receive the home care services that she is asking for: Sudbury MPP Rick Bartolucci Constituency Office email: rbartolucci.mpp.co@liberal.ola.org

Ministry of Community Safety & Correctional Services email: rick.bartolucci@ontario.ca

Minister of Health & Long-Term Care David Caplan: ccu.moh@ontario.ca

Non-Canadians can use these email addresses, too. If enough individual people write to them, they may take notice.

3. Consider also communicating with the North East Community Care Access Center on Minna’s behalf. This is the center that is refusing care to Minna (unfortunately there seems to be no email contact for them):

North East Community Care Access Centre (the centre that is refusing care to Minna)
Head Office/Sudbury Branch
1760 Regent Street
Sudbury ON P3E 3Z8
(705) 522-3461 or 1 (800) 461-2919 (Sudbury

To access the Long-Term Care ACTION Line call: 1-866-876-7658 or TTY: 1-800-387-5559.

(More detail on their Complaints and Appeals Process at http://tinyurl.com/aeu6vt)

4. Also consider communicating with the Maison Vale Inco Hospice–this is a different place (NOT related to the North East Community Care Access Center), and Minna would like to be admitted there.

Maison Vale Inco Hospice (the place Minna hopes to gain admittance to)
(705) 674-9252
1028 South Bay Rd. Sudbury, ON P3E 6J7
Website: http://www.maisonsudburyhospice.org/
Resident Care Coordinator Elaine Klym: elaine@maisonsudburyhospice.org
Executive Director is Léo Therrie

5. If you will be in Ontario on January 23, consider joining a protest and march on Minna’s behalf.

6. Join the Facebook group, “Minna’s Hunger Strike–Call to Action for an ALS Patient Denied Care” to learn the latest news on what is happening with Minna’s case and what people are doing to help. If you are not already a member of Facebook, it only takes a few minutes to sign up for a free account.

7. Please circulate this text further via your network of contacts in the disability and human rights communities, Facebook page, blog site, etc.

Thank you for taking action.

Finally, if you would like to hear from Minna in her own words, she has put up a nicely accessible section on YouTube, with the transcript of what she says included in a sidebar on the left of the screen. You can find it at the Sudbury CCAC exposed channel.

With your help, this woman can get the help she needs to live her life.

Please come back for updates as they become available. –Stephen Drake

Request to remove life-support from 6-Month-Old in Texas Withdrawn for Now – Texas NDY

abuse, crime and punishment, david coronado, futile care, haleigh poutre, Our News & Commentary Blog, Surrogate Decisions & Guardianship, texas

On Monday this week, NDY was contacted by Texas attorney Jerri Ward, who has worked extensively on behalf of families and patients in fighting the aggressive implementation of “futility” policies in Texas.

The subject of the call was an impending court hearing in Dallas County juvenile court to decide on a petition by a court-appointed guardian to allow withdrawal of life-support from six-month-old David Coronado. David was allegedly the victim of severe abuse at the hands of his parents.

Here’s a summary of the rationale for removing life support from this infant from the January 17th edition of the Dallas Morning News:

On Monday, the infant’s court-appointed guardian filed a motion in Dallas County juvenile court asking that doctors at Children’s be permitted to remove David Jr. from life support.

The motion, noting that the parents “have not consented to withdrawal of support,” argues it is in his best interest. Court records describe him as “neurologically devastated.”

If this sounds familiar, it should. This is even milder language than that used by the Department of Human Services in Massachusetts to justify the removal of life-support from Haleigh Poutre, who was also apparently abused and written off as “virtually brain-dead.” As anyone familiar with the case knows, the accused abuser challenged the removal of life-support, delaying the action long enough so that by the time Poutre was “granted” the “right” to die with “dignity” she had already shown signs of awareness and improvement.

(I wondered in the Poutre case – and in this one – if part of the dynamics relate to the desire to nail the accused abusers with murder charges. The only trouble with that is that you have to have the kid die to level a murder charge.)

Fortunately, in this case, we have a reprieve for David Coronado. Here’s part of the story, as related in today’s edition of the Dallas Morning News:

The fate of a brain-damaged 6-month-old Dallas boy is uncertain after his court-appointed attorney on Tuesday withdrew a motion to let doctors take the baby off life support.

But the fate of his parents, arrested last month on child abuse charges, may hinge on whether David Coronado Jr. survives his horrific injuries.

The baby’s attorney ad litem, Holly Schreier, told a juvenile district court judge that doctors at Children’s Medical Center Dallas had assessed a change in the baby’s condition. She did not say what the change was, and she did not return a call for comment.

A doctor reported in December that he expected David to suffer severe disabilities if he survived. It is unclear if doctors now expect the baby to remain in a vegetative or minimally conscious state.

Meanwhile, word of the possible hearing on withdrawing the child’s life support had spread over the weekend among right-to-life and disabilities-rights groups, at least one of which readied attorneys to intervene Tuesday morning.

“Brains are very resilient, and in a 6-month-old baby, to conclude that he’s neurologically devastated and is going to stay permanently that way I think is irresponsible,” said Jerri Lynn Ward, an attorney representing Not Dead Yet, a disabilities-rights group. (emphasis added)

Schreier’s motion to allow support to be withdrawn did not explain her reasoning, other than to say that it was in the baby’s best interest and that she had discussed the issue with doctors at Children’s.

As the article shows, the result of that call was to arrange for Jerri Ward to represent the Texas chapter of NDY as intervenors in the case.

Here’s the thing, though. The withdrawal of the motion by the attorney ad litem wasn’t unexpected.

The day before the hearing (which was cancelled), Bob Kafka (national ADAPT organizer and organizer of Not Dead Yet of Texas) emailed the following to the Executive Commissioner of Texas HHS (and cc’d to several activists/advocates concerned with futility issues):

Though we are still getting information our understanding is that CPS is going to court tomorrow to have life supports withdrawn. If as we have been told this is occurring because of severe cognitive involvement it raises major red flags. I know you have confidentiality requirements would appreciate any info you can provide.

By late that evening, Kafka and other recipients of the email were informed that “additional information” had been received, the motion had been withdrawn and that CPS hadn’t taken any action to remove life support.

Bob says there’s no way to tell if his email had anything to do with the withdrawal of the motion. OTOH, I am sure it didn’t hurt.

It also puts Child Protective Services and the hospital on notice – there are people who care very much how this child’s life is handled. –Stephen Drake

Addendum: Reporter Steve Thompson (who reported on the Coronado case) writes on the Dallas Morning News‘ “Crime Blog” and he has a little more on the motion that was withdrawn – turns out that the phrase “for now” was well-advised:

The attorney/guardian ad litem told the judge that the baby, David Coronado Jr., had had a change of condition. She did not say what the change was.

“Withdrawing” a motion, I’m told, doesn’t make it go away. It just means that it won’t be heard right then. So, since it may come into play again, I thought people might be interested in reading it.

He’s reproduced the motion from his notes on the blog, which you can read here.

Celebrating Benjamin Franklin’s Contributions to PWDs – Technology and Satire

adaptive technology, history, medical devices, Our News & Commentary Blog, satire

Portrait of Benjamin FranklinBenjamin Franklin was born on January 17th, 1706 (if you want to be picky, it was January 6, 1705 by the “Old Style” calendar system in effect when Franklin was born).

So this Saturday is the 303rd anniversary of his birth.

It’s a good excuse to devote a little time and space to one of the most brilliant men ever born on this continent.

Franklin’s accomplishments cover way too much territory to cover in a single blog entry – and I’m pretty sure that wouldn’t be the kind of thing people come here to read, anyway.

So I’ll share just a few things today that are pertinent to the lives of people with disabilities, illnesses and aging issues. After that, I’ll share his contribution to NDY concerns.

In response to a request from his seriously ill older brother, Franklin designed the first flexible urinary catheter ever used in the Colonies. As Franklin got older and experienced age-related limitations, he invented more useful devices. As his eyesight weakened, Franklin developed a need for two separate pairs of glasses – and grew tired of switching between them. This frustration led to his invention of bifocal glasses, simply cutting the tops and bottoms of his lenses from each pair and joining them together.

Franklin loved to read and had a large library. As he got older, climbing a ladder to get books on high shelves was no longer something he could do easily – or at all at times. He invented a mechanical reaching device for grabbing books off high shelves he referred to as the “long arm.”

Franklin was a talented and prolific writer. Much of what he wrote was published under pseudonyms for various reasons. In 1776, the Continental Congress sent Franklin to France as an ambassador – in an ultimately successful attempt to garner military and financial support for the war between the Colonies and England.

Franklin kept up his writing efforts while working in France. One of his most famous pieces, The Sale of the Hessians, was published in 1777. Here’s Walter Isaacson’s introduction to the piece in his book A Benjamin Franklin Reader (p.271):

Franklin also waged a propaganda campaign, and the device he often used, once again, was that of satire. Along the lines of his Edict from the King of Prussia, Franklin published anonymously what purported to be a letter to the commander of the Hessian troops in America from a German count who got paid a bounty for the death of each of the soldiers he sent over. Because Britain had decided not to pay for any wounded soldiers, only for those who died, the count encouraged his commander to make sure that as many died as possible.

Finally, at last, you might get an idea what Benjamin Franklin is doing here on the NDY blog. Below is the opening to Franklin’s “Sale of the Hessians”:

FROM THE COUNT DO SCHAUMBERGH TO THE BARON HOHENDORF,
COMMANDING THE HESSIAN TROUPS IN AMERICA

Rome, February 18, 1777
MONSIEUR LE BARON: — On my return from Naples, I received at Rome your letter of the 27th December of last year. I have learned with unspeakable pleasure the courage our troops exhibited at Trenton, and you cannot imagine my joy on being told that of the 1,950 Hessians engaged in the fight, but 345 escaped. There were just 1,605 men killed, and I cannot sufficiently commend your prudence in sending an exact list of the dead to my minister in London. This precaution was the more necessary, as the report sent to the English ministry does not give but 1,455 dead. This would make 483,450 florins instead of 643,500 which I am entitled to demand under our convention. You will comprehend the prejudice which such an error would work in my finances, and I do not doubt you will take the necessary pains to prove that Lord North’s list is false and yours correct.

The court of London objects that there were a hundred wounded who ought not to be included in the list, nor paid for as dead; but I trust you will not overlook my instructions to you on quitting Cassel, and that you will not have tried by human succor to recall the life of the unfortunates whose days could not be lengthened but by the loss of a leg or an arm. That would be making them a pernicious present, and I am sure they would rather die than live in a condition no longer fit for my service. I do not mean by this that you should assassinate them; we should be humane, my dear Baron, but you may insinuate to the surgeons with entire propriety that a crippled man is a reproach to their profession, and that there is no wiser course than to let every one of them die when he ceases to be fit to fight.

Anyone who is interested can read the rest of the letter here.

Franklin was a pragmatic man who was all too familiar with both the great potentials and equally great faults existing side by side within the human character. This piece worked because – even if no one believed the “Count” would actually write something like this – they could well believe that the letter could be an accurate reflection of his true sentiments. The idea that a person’s value or worth was limited to their ability to serve their state or ruler wasn’t exactly was probably more fact than fiction in Europe in those days.

Franklin was perhaps the only founding father with a well-developed sense of humor. A surprising amount of what he wrote is still readable, funny and relevant to our own world and changed language. Satire has been an important part of American cultural and political discourse. Any of us who use satire as an advocacy tool have a tie to Franklin and a debt of gratitude for showing us the way. –Stephen Drake

The Spoof: Euthanasia Man Wanted to Live

euthanasia, humor, Our News & Commentary Blog, satire, Switzerland

The Spoof is a web publication specializing in satire and humor. Quality-wise, I’ve found it to be kind of hit-and-miss, but that’s not necessarily a bad thing. Edgy humor can sometimes miss the mark – or at least end up not hitting everyone who reads it as funny.

Spoof writer MonkeyInTheBath decided last year’s seemingly never-ending stories about elderly, ill and disabled Brits going on one-way Swiss suicide trips were overdue for some satirical treatment:

Euthanasia man wanted to live

A man was killed by his family because they believed he wanted euthanasia to end his suffering.

Mr Dan Kilmeov was taken by his family to a clinic Switzerland where doctors administered life-ending medicine, more commonly known as poison.

It is thought that Mr Kilmeov’s wife misinterpreted a comment he made, when he said “Oh, I could die for a curry right now”. Mrs Kilmeov immediately booked flights to Switzerland and had her husband killed. She had help from the euthanasia promotions company, DignityMyAss.

There’s more to the article, but you should go read the rest of it here.

This article was published in early December. I can’t wait to see if MonkeyInTheBath or some other Spoof writer tackles the latest about the accusations of profiteering leveled against Dignitas (aka “DignityMyAss”). –Stephen Drake

Seattle Weekly – “Terminal Uncertainty”

assisted suicide, media coverage, Our News & Commentary Blog, professional accountability, research, safeguards, Washington state

Just out today, the Seattle Weekly has an in-depth article exploring the uncertainties surrounding a medical prognosis of having six-months to live and its implications for impending legislation for legalization of assisted suicide in Washington state.

From the article:

The law has deeply divided doctors, with some loath to help patients end their lives and others asserting it’s the most humane thing to do. But there’s one thing many on both sides can agree on. Dr. Stuart Farber, head of palliative care at the University of Washington Medical Center, puts it this way: “Our ability to predict what will happen to you in the next six months sucks.”

Reporter Nina Shapiro shares the somewhat “arbitrary” selection of a “six months or less” to live for assisted suicide legislation following Medicare guidelines for hospice eligibility. Here are the hoops Shapiro says doctors have to jump through to justify hospice for their patients:

To do so, doctors fill out a detailed checklist derived from Medicare guidelines that are intended to ensure that patients truly are at death’s door, and that the federal government won’t be shelling out for hospice care indefinitely. The checklist covers a patient’s ability to speak, walk, and smile, in addition to technical criteria specific to a person’s medical condition, such as distant metastases in the case of cancer or a “CD4 count” of less than 25 cells in the case of AIDS.

OTOH, the process for OKing assisted suicide is a lot less complicated:

No such detailed checklist is likely to be required for patients looking to end their lives in Washington, however. The state Department of Health, currently drafting regulations to comply with the new law, has released a preliminary version of the form that will go to doctors. Virtually identical to the one used in Oregon, it simply asks doctors to check a box indicating they have determined that “the patient has six months or less to live” without any additional questions about how that determination was made.

According to studies described in this article, roughly 20 percent of patients in hospice die at about the time their doctors say they will. Between 13 and 20 percent die after the time predicted by their doctors – some months or years after the date. The majority die sooner than the prognoses given by their doctors indicated.

But that’s just if you look at the population of hospice patients as a whole. Zeroing in on certain conditions yields some interesting data:

When a group of researchers looked specifically at patients with three chronic conditions—pulmonary disease, heart failure, and severe liver disease—they found that many more people outlived their prognosis than in the Christakis study. Fully 70 percent of the 900 patients eligible for hospice care lived longer than six months, according to a 1999 paper published in the Journal of the American Medical Association.

So, given all that uncertainty, what will doctors do? Some won’t participate. Others will only prescribe lethal medications to patients with a prognosis of a month or two to live.

Alarmingly, other doctors have a different way to deal with the dilemma:

The UW’s Farber leans toward a different approach. While he says he hasn’t yet decided whether he himself will write fatal prescriptions, he plans at least to refer patients to others who will. Given that prognostic precision is impossible, he says, “I personally just let go of the six months.” Instead, he says he would try to meet what he sees as the “spirit of the law” by assessing that someone is “near” the end of their life, so that he could say to them, “You’re really sick and you’re not going to get better.”

Knowing exactly when someone is going to die, he continues, is not as important as knowing when someone “has reached the point where their life is filled with so much suffering that they don’t want to be alive.”

In other words, according to Farber, the letter of the law and the strict guidelines that were promised aren’t important – or anything he’s obliged to follow. It’s probably not too big a leap to assume that some doctors in Oregon have already adopted that mindset (the article contains some good information the Oregon law makes it impossible to know how many people live long after getting a lethal prescription).

As I’ve noted elsewhere, “strict safeguards” are no better than posted speed limits on a highway. Farber and others of his profession know they don’t have to worry about monitoring or enforcement on this particular “highway.”

In the end, Farber is exposing what is already obvious to those of us who have watched and argued with the assisted suicide/euthanasia movement – this has nothing to do with medicine or a physician’s duties. It’s a value judgment, plain and simple. A lethal one. –Stephen Drake