Monday, October 17, 2016

Shanny Reimer-Haider Move her to Alberta. They can choose to die There With Doc's help. Like · Reply · 1 · Oct 4, 2016 5:01pm Julie Ali · University of Alberta They even die in Alberta with doctors help against the personal directive requirements for full resuscitation or without proper medical investigation. Bureaucratic and political expediency decisions seem to be the only constant in these end of life decisions by the system. The end of life process needs clarity, careful consideration and due process followed. Decisions can be made that impact vulnerable handicapped citizens and seniors and these decisions may not be correct or appropriate. They are also decisions which are not reversible. In this case, the family clearly has decided that termination is appropriate. In my family's case we decided that premature termination of our family member was not appropriate but this was repeatedly considered by caregivers. In both cases, the system failed. http://readingchildrensbooks.blogspot.com/.../4-comments...

In this case the problem seems to be that the legal documents to specify early termination won't do:


http://vancouversun.com/news/staff-blogs/medicine-matters-a-familys-anguish-as-nursing-home-continues-feeding-vegetative-patient
Lindsay Wallace
I hope the living wills of me and my family are never disrespected in this horrible, inhumane way.
LikeReply2Oct 4, 2016 4:29pm
Karen Colleen RS
Living wills are no longer acceptable you must have a representation agreement
LikeReplyOct 4, 2016 7:19pm


http://vancouversun.com/news/staff-blogs/medicine-matters-a-familys-anguish-as-nursing-home-continues-feeding-vegetative-patien

MEDICINE MATTERS: A family's anguish as nursing home continues feeding vegetative patient

Published on: October 4, 2016 | Last Updated: October 4, 2016 2:12 PM PDT
Margot Bentley, a former nurse who's been in a vegetative state for years, languishes in a Fraser Health-funded nursing home in Abbotsford. Handout photo [PNG Merlin Archive]
Margot Bentley, a former nurse who's been in a vegetative state for years, languishes in a Fraser Health-funded nursing home in Abbotsford. Handout photo [PNG Merlin Archive]
The photo above is difficult to view. To all those offended by the photo of an emaciated Margot Bentley, I offer apologies. But it’s critical to this post and the issues involved in the tragic case involving a nursing home, health professionals and the Fraser Health Authority which refuses to let a nursing home resident die, according to her expressed wishes.
Bentley, as my previous stories have described, has been in a vegetative state for six years and institutionalized for almost twice as long. The former nurse signed a living will several years before she got Alzheimer’s disease, requesting euthanasia in the event she developed an incurable disease. But her wishes have never been honoured.
Hence, this is how she looks and exists today.
Hammond with a photo of her mother in healthier days.
Katherine Hammond with a photo of her mother in healthier days.
Some months ago I wrote about Fraser Health’s bid to get the Public Guardian and Trusteeinvolved in the case after Bentley’s daughter, Katherine Hammond, along with Bentley’s husband, refused (since January, 2015) to pay the $4,000 a month nursing home bills on the grounds that Margot’s wishes have not been respected. Her life is being prolonged by what the family terms as forced feeding.
Fraser Health said it referred the case to the public trustee office because of concerns over how “the funds of an incapable adult are being managed.”
Hammond, also a former nurse, just like her mom, told me the review by The Public Guardian and Trustee has been completed and “they are not seeking authority to manage her affairs.”
The file is indeed closed.
The family still refuses to pay Maplewood House in Abbotsford, which is operated by a non-profit society and subsidized by Fraser Health.
Says Hammond:
“We feel that if Maplewood House did not feel able to discontinue feeding my mother, we should have been able to bring her home and, under the care and supervision of her GP, she would have been allowed to die, compassionately and appropriately medicated and sedated. This did not happen; in fact, the Abbotsford Police were to be called if we tried to remove my mom from the facility.
So, here she is, 5 years after we tried to have her wishes honoured. Skin and bone, increasingly spastic, lots of rotten teeth; kept alive against her wishes, her suffering prolonged by others. What a horrible and painful tragedy this is.”
When I asked Hammond if I could publish the latest photo of her mother, she said:
“Yes, you can use that tragic picture. Maybe it will help people to question the notion of sustaining life… even if there is no quality of life, of any kind, remaining. In fact, it is often just the prolonging of suffering.”
Tasleem Juma, spokeswoman for Fraser Health, said this when I asked for a comment:
Margot Bentley's living will asking for euthanasia if she developed an inucrable disease. The document is not being honoured because it was not updated and because of a BC Court of Appeal ruling (link below).
Margot Bentley’s living will asking for euthanasia if she developed an incurable disease. The document is not being honoured because it was not updated and because of a BC Court of Appeal ruling (link below).
“We appreciate this is a very difficult and emotionally-charged issue. As healthcare providers, we are obligated by law to provide the “necessities of life” to our patients, residents and clients.  This case raised a number of questions about what that means.  That is why we turned to the courts to get clarity of the law as it currently stands.
“We understand that this decision of the courts was not what the family of Mrs. Bentley had hoped for, and they still face the difficult and emotional task of supporting their loved one through the final stage of her life.”
“We will continue to support Maplewood in caring for this resident and engaging her family in the care process.”
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Shanny Reimer-Haider
Move her to Alberta. They can choose to die
There
With
Doc's help.
LikeReply1Oct 4, 2016 5:01pm
Julie Ali ·
They even die in Alberta with doctors help against the personal directive requirements for full resuscitation or without proper medical investigation. Bureaucratic and political expediency decisions seem to be the only constant in these end of life decisions by the system.

The end of life process needs clarity, careful consideration and due process followed. Decisions can be made that impact vulnerable handicapped citizens and seniors and these decisions may not be correct or appropriate. They are also decisions which are not reversible.

In this case, the family clearly has decided that termination is appropriate. In my family's case we decided that premature termination of our family member was not appropriate but this was repeatedly considered by caregivers. In both cases, the system failed.

http://readingchildrensbooks.blogspot.com/.../4-comments...






Linda McGourty ·
So in essence what a person wants and specifies in a will is overrided by the Fraser Health Authority. That is crap. What kind of a "health" authority lets this kind of thing go on? This poor woman, knew she didnt want this, said she didnt want this and yet they continue to torture her under the guise of care. So very very wrong. Shame on them. What happened to "do no harm?"
LikeReply105Oct 5, 2016 10:08amEdited
Jennifer Anne
While I absolutely agree with you, a living will is not a legal document in Canada. We have what is called an Advanced Directive which includes Advanced Care Planning and appointment of representatives to carry out those wishes.
Further, while assisted death is now legal in Canada, without a legal document stating her wishes, I don't believe her case meets the minimum decision making requirements needed to access assisted death in Canada.

Again, I absolutely agree with how horrible this situation is. But, the issue is that a living will isn't a legal document and hasn't ever been (easily overturned in court). I urge everyone to look into creating an Advanced Directive and to let your parents and grandparents know to do the same!

This poor woman and her family 😔
LikeReply7Oct 4, 2016 10:07pm
Stephen Ping Hi Cheung ·
Wait and see they make YOU die earlier than you wish when the scale is tipped to NOT care for the weak and helpless.
UnlikeReply2Oct 4, 2016 10:56pm
Patrick Mark Venton ·
incompetency knows no shame.
LikeReply1Oct 4, 2016 11:11pm
Susan Fraser ·
Stephen Ping Hi Cheung you cannot base such decisions on fanciful ideas about what "might" happen. May you and your loved ones never have to go through what this woman and her family have been forced to endure.
LikeReply6Oct 4, 2016 11:45pm
Gloria Onishenko ·
Stephen Ping Hi Cheung you can wait as long as you want to die, let that be your decision. You just don't have the right to disrespect mine.
LikeReply2Oct 5, 2016 7:55am
Linda McGourty ·
Jennifer Anne heres the thing,why would the health authority want to overturn it in court? Why not just let them take her home, they are basiclly holding her prisoner. Does a person have a right to care for their ailing mother at home? Yes they do, we are not forced to be in a nursing home, so fine, dont ask the so called health authority to stop feeding your suffering parent, get a court order to take her home for care, after that whatever happens, happens. This is a pre warning for anyone else, if your parent or loved one gets in this condition and you know what they want, dont ask for help ending their suffering, just do an end run around it. Take them home for care, do not let a stranger decide what happens to your loved one..How many more years could this go on, another 10, 20, its disgusting and doesnt even resemble health care , its like torture. "“We will continue to support Maplewood in caring for this resident and engaging her family in the care process.” This statement by them is laughable. I would make her not one of their residents.
LikeReply1Oct 5, 2016 10:15amEdited
Julie Ali ·
Stephen Ping Hi Cheung You are quite correct. I am actually quite surprised that the system is keeping Margot Bentley alive. I am surprised by the decision to keep this woman alive because in Alberta, my family has been fighting to PREVENT the premature termination of my severely handicapped sister. Perhaps the system believes there are liability issues in this case; this is the only reason I can think of why they would refuse termination.

I believe Margot Bentley has stated that she wants to die if her situation reaches this point. In my sister's case, she has stated she wants full resuscitation. Both of these citizens have made statements via documents that are disregarded. In Margot Bentley's case it seems that a living will is not enough. In my handicapped sister's case it appears that the personal directive stating full resuscitation can be overturned at will by the physician.

There needs to be a clear process for resolution of all these premature termination decisions with appeals that are respectful of the family's wishes and the rights of the patients who lack capacity and who are handicapped. It seems that in Alberta there is no requirement to document do not resuscitate (DNR) decisions that occur repeatedly other than an order in the patient file. It would seem sensible for a specific document to be present to explain why these repeated DNR decisions are being made and what investigations were carried out.

There seems to be no requirements to investigate problems adequately to rule out abuse or failures in care. In my sister's case they called in consultants who asked for respiratory investigations that were not done. It's curious to me why they were not done. I had to spend a year doing data card downloads to find that the staff at the nursing home failed to put on my sister's BIPAP machine on two occasions. This is not something that you would normally expect to find but this abuse was confirmed by the Protection for Persons in Care Office at Alberta Health. The very fact that I had to do the investigation rather than the doctors indicates to me at least that there are problems in the system with reference to the care of severely handicapped citizens in continuing care and these problems require scrutiny by families since government is not interested in doing this work. For example, I now receive monthly data card downloads from VitalAire to confirm that staff put on my sister's machine at night; I suggest all families have some way to monitor care of their own in continuing care. I also suggest families investigate when the system will not.

In my sister's case, no one did this longitudinal investigation or any useful follow up work and each successive DNR, do not intubate and no ICU was blithely added to her medical file. This lack of interest by the system in proper medical investigation would have ended in her premature termination if we had not got involved and also gone public. This sort of poor decision making and lack of documentation of the rationale for DNR plus the imposition of unilateral death decisions seems to be inappropriate and full of liability issues. I mean just because you are fed up of repeated appearances of a patient at the emergency with carbon dioxide narcosis doesn't mean you put DNR orders on a patient's file. This is both unethical and not professional behavior.

It is my opinion that the system is designed to prematurely terminate handicapped and elderly citizens who cannot advocate for themselves and family advocates lack any power to reverse bureaucratically and politically expedient decisions by the system. This family has gone public. It's the only way to help family members in these situations and ask about the ethics of these decisions.
LikeReply8 hrs
Linda McGourty ·
Julie Ali And this is eactly why people must and should spell out THEIR wishes, so no one else makes the decision for them. It should become a clear law. My family disconnected my father from life support, we knew what he wanted and were not going to allow anyone to interfere, if he had said the opposite we would have fought for him .The patients wishes must take precedence over all. I feel for you and your sister. I dont believe the system is designed to prematurely terminate the elderly or the handicapped, I think healthcare providers insert too much of their personal feelings into the matter. If we hadnt made the decision, they were planning to move my Dad to the basement of the hospital and leave him there indefinatley, brain dead on life support, his wishes were clear, we followed them. Thats it. We need a legal, enforcable way for people to state their wishes, and follow them. No outside opinion, no family interference, no outside agency policies, just the patients desire taking precedence over everything.
UnlikeReply15 hrsEdited
Julie Ali ·
Linda McGourty It may be the case that you had no risk of premature termination in your dad's situation but in my sister's case there were repeated attempts to override the personal directive requirements for full resuscitation. The personal directive is the legal document that spelled out full resuscitation for my sister.

The way the Grey Nuns Hospital doctors presented the case was also very interesting. They told us that a severely handicapped woman with carbon dioxide narcosis who had no insight was able to refuse intubation. Hmm... yet after she was discharged and had to be admitted to the University of Alberta Hospital the doctors there did not consider her competent to make a decision to refuse intubation based just on her blood gas levels. In addition, doctors indicated she had no insight based on their evaluations. On yet another hospitalization at the Royal Alexandra Hospital, her personal directive requirements were followed. It's such a mish mash of end of life orders and a gauntlet of stressful situations for patients and families to go through and survive in Alberta that the system has definetly failed to honor the voices of citizens and respect their final wishes. Most families would have given up faced with the experiences our family has gone through. I am sure that most families do not advocate for three years and more for family members to be kept alive.

The system is messed up in Alberta especially at Covenant Health. This health authority tells us that it is not comfortable with death by doctor legislation and yet its doctors were perfectly comfortable trying to prematurely terminate a severely handicapped woman with a reversible condition. Very unethical behavior and completely unacceptable in my opinion.

Why are families having to fight for life? Why is premature termination considered for patients without insight? Why are doctors going against the wishes of families with patients with reversible conditions? I'd say it's all about saving the system money.

The legal way to do the end of life decisions is already present in Alberta and it is called the Goals of Care designation. However, this designation is determined by doctors. Since the end of life decision is ultimately decided by doctors, and since doctors do not appear to be accountable for their DNR decisions as per my experience, I believe handicapped patients and the elderly are at risk of premature termination. These were also not solitary events but repeated failures in the system. The system did not learn from contact with the family nor did it care about the vulnerable patient who was unable to advocate for herself.

None of this improper medical decision making should have occurred. My sister should have got proper care at the long term care facility which would have prevented repeated hospitalizations. If doctors at the Grey Nuns Hospital had done the longitudinal respiratory study I did they would have found the care problems that resulted in the repeated hospitalizations. When the doctors found out about the abuse and the abuse findings by the PPIC office at Alberta Health they had an obligation to do the right thing and help my sister out of the quagmire of DNR orders. Instead, an ethicist had to tell them what to do. It's a farce.

In my opinion, the end of life decision making should be simple. If the personal directive of a patient indicates full resuscitation and that patient can be restored to life as my sister was, then this is a no brainer. Do the resuscitation. My sister is alive today. She would have been prematurely terminated by the doctors if she had been alone.

Don't tell me that premature termination doesn't happen. We just don't hear about it because doctors do it without consent or permission, families have no power to do anything about this business and appeals to the system are fruitless because the setup assures that the doctor is always right (he has followed protocol and the appeal committee congratulates him for thinking far ahead). Just look at this recent case that I have written about here: http://readingchildrensbooks.blogspot.ca/.../4-comments...

Going public is the only way out of these horrific situations. Families who want their family members alive when a DNR is issued need to go to the press. It's the same case for families who want their family members to die according to stated wishes. We should not have to go public but in Alberta at least, no one in government does the work required to protect vulnerable citizens and so this is the only way to get the outcomes required by the patient and family.

In your father's case, the health care workers may have been willing to keep your dad alive but in our sister's case they certainly were not interested in this option.
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