Jul 26

Patients rights in America

Bioethics, Church, Culture, Law, Society No Comments »

Let’s focus on Wisconsin here, as a microcosm of the morphing healthcare system that’s redefining health and care and prompting an effort to examine it all carefully.

The Wisconsin bishops released a statement warning people about the spreading use of Physician (or Provider) Orders for Life-Sustaining Treatment (POLST). They did it in a carefully but clearly worded pastoral letter Upholding the Dignity of Human Life.

A POLST form presents options for treatments as if they were morally neutral. In fact, they are not. Because we cannot predict the future, it is difficult to determine in advance whether specific medical treatments, from an ethical perspective, are absolutely necessary or optional. These decisions depend upon factors such as the benefits, expected outcomes, and the risks or burdens of the treatment.

A POLST oversimplifies these decisions and bears the real risk that an indication may be made on it to withhold a treatment that, in particular circumstances, might be an act of euthanasia. Despite the possible benefits of these documents, this risk is too grave to be acceptable.

Finally, the design and use of the POLST document raises concerns as to whether it accurately reflects and protects a person’s wishes.

These have all been concerns for years in the medical/legal system, which became a riveting national debate while Terri Schiavo was being starved and dehydrated to death. It also became a discussion around a lot of family tables across the country at that time, causing a lot of media coverage of things like ‘living wills’ and a lot of Americans to rush to arrange them or sign already prepared ones that appeared online in a number of places.

Don’t do that, say the bishops and the experts at the Patients Rights Council and Terri’s Life and Hope Network, among others.

The pastoral statement:

We encourage all persons to use a durable power of attorney for health care. For those who are age 18 or older, completing this document allows you to appoint a trusted person to make health care decisions on your behalf if a situation arises in which you cannot make these decisions for yourself. It is important to discuss your wishes and Catholic teaching with the person whom you appoint and to choose someone who will make health care decisions based on these principles.

The Patients Rights Council site is loaded with resources, for people of any state in the nation and in life and belief system. Just don’t let others take your treatment decisions away from you and determine them for you, in the absence of your advance directive. PRC’s Rita Marker told me people can get a Protective Medical Decisions Document at their site, no charge (suggested donation encouraged). More on that here.

I’ve worked for years with Terri Schiavo’s family, since they were trying to save her life and just take her home and care for her. They devoted the rest of their lives to helping other families avoid that ordeal with information and resources. And first hand relief efforts.

And still in recent years and even months and weeks, I’ve known or known of families caught in the pressure of having to make medical decisions they weren’t prepared for, wondering who had what authority (or why they didn’t have the rights they thought) while their loved ones died.

But none of them were from TMI. We can’t be too well informed.

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Nov 28

Collin Raye, voice for the voiceless

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Health care practice has already posed threats to the disabled and cognitively impaired. Now, healthcare law is putting the lives of the most vulnerable people at risk. Who’s speaking out for ‘the least of these’?

Collin Raye, for one.

Collin Raye is the new national spokesperson for the Terri Schiavo Life & Hope Network, which was established following Terri’s death in 2005 by starvation and dehydration. The group is a non-profit dedicated to helping persons with disabilities, and the incapacitated who are in or potentially facing life-threatening situations. He travels the country sharing his personal story and cherished music at both concert venues and prolife conferences and political events.

His personal story is poignant, twice over, in his experiences with his wife and granddaughter. He memorialized her and their experience in the profoundly beautiful song ‘She’s With Me.

He told me on radio that it was “the closest thing to a Job moment I’ve ever had”, when Haley passed away at the age of nine. And that the issue of health care for the cognitively impaired and disabled, the most vulnerable among us, “is a vital topic that no one else is talking about.”

At least we are.

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Jun 03

Dr. Death meets his

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….maker.

The family of Terri Schiavo released this statement.

“It was clear that this man had a dysfunctional obsession and infatuation with death and that his true involvement in these deaths was never properly reported,” stated Terri Schiavo’s Life and Hope Network’s Executive Director, Bobby Schindler.

In an October 2010 MSNBC interview with Jack Kevorkian, he was asked to weigh in on Terri Schiavo’s two-week court ordered dehydration death. Dr. Kervorkian stated that Terri would have qualified for his assisted suicide service. Kevorkian further explained, “[She] could qualify because the husband was next of kin, legally. And that’s all that counts because you can’t have interference by family members who might be antagonistic or hostile.”

“This statement only further exposes how the influences in society and the media used the torturous death of my sister, Terri Schiavo, to validate the ‘Right to Die’ mentality and Kevorkian’s lust for the death of others, which drove his agenda,” Schindler explained.

Contrary to this mentality, Terri Schiavo’s Life and Hope Network aggressively advocates for vulnerable persons, the disabled, and those who are dying.

“History will surely judge Kervokian as a very dark figure. We are very encouraged that today we see a greater awareness that every life deserves dignity and protection,” stated Suzanne Schindler Vitadamo, Terri Schiavo’s sister.

“While Terri Schiavo Life & Hope Network denounces all of his work, we do recognize that every life is precious and therefore extend our prayers and condolences to the family of Jack Kevorkian,” added Vitadamo.

No matter what the circumstances, the ethic of life is consistent. It involves faith and the hope of reconciliation.

Catholics have responded to the June 3 death of assisted suicide activist Dr. Jack Kevorkian with prayers for him and his victims, affirming the Christian belief in the sanctity of life.

“Left out in much of the commentary on the death of Jack Kevorkian is the sobering and deadly legacy he leaves behind,” Ned McGrath, director of communications at the Archdiocese of Detroit, said in a June 3 statement.

McGrath added, “May God have mercy on his soul and on the scores of confused, conflicted, and, at times, clinically depressed victims he killed.”

When Justice Harry Blackmun passed away, a Catholic cardinal said ‘at least he now knows when life begins.’ The thought occurs that at least Kevorkian now knows when life is meant to end. And who decides.

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May 18

Deny conscience and redefine ethics

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And still call it health care?

Yes, in many places. Start with Sweden.

The Swedish parliament has overwhelmingly passed an order instructing Swedish politicians at the Parliamentary Assembly of the Council of Europe (PACE) to fight against the rights of doctors to refuse to participate in abortions.

Read that again. The Swedish parliament overwhelmingly voted to deny doctors their fundamental conscience rights to practice moral medicine.

The Riksdag passed a resolution, by a vote of 271 to 20, to condemn an October 2010 PACE document supporting conscience rights for doctors.

This is surreal. But it’s really happening.

John Smeaton, head of Britain’s Society for the Protection of Unborn Children, commented: “Sweden’s vote today shows the lengths to which the supporters of abortion are prepared to go to promote the killing of unborn children. There are no international conventions which recognise a right to abortion, whereas conscientious objection is a basic principle of international human rights law.”

This is a new world, and it’s not so brave. It’s seeming more like Wonderland all the time.

In Britain, there’s this:

A survey conducted recently of disabled people in Britain, commissioned by the disability group Scope, found that 70 percent are “concerned about pressure being placed on other disabled people to end their lives prematurely” “if there were a change in the law on assisted suicide.” More than a third were worried they would personally experience such pressure…

“Disabled people are already worried about people assuming their life isn’t worth living or seeing them as a burden, and are genuinely concerned that a change in the law could increase pressure on them to end their life.”

‘Life unworthy of life’ – or lebensunwerten Lebens - as Princeton Professor Robert George often speaks of, whether talking about abortion, euthanasia, Terri Schiavo and the cognitively impaired, or any group marginalized by a more powerful group.

And somehow, powerful groups are increasingly better-positioned to marginalize other human beings they consider unworthy of health care resources by a new calculus and tortured logic. Such as…ethics committees. Or some ethics committees in some places.

Piecing together the clinical picture of a complex patient is difficult enough. Add to the mix the patient’s value system, that of the family and those of various healthcare providers, and a case that might involve difficult decisions becomes even more daunting. That’s where an in-house ethics committee can step in.

That actually sets up a chilling premise.

Let’s jump to the section sub-headed ‘Common Conflicts.’

Patients and their healthcare providers frequently weigh the value of additional cancer-focused treatment versus comfort care only, as well as provision of other care such as dialysis, and artificial nutrition and hydration.

Stop right there. That’s a manufactured term, a misnomer. It was only in recent years that giving a patient basic food and water got labeled ‘artificial’ or ‘extraordinary’ care. For the very tendentious purpose of disqualifying it as basic and routine care.

Advance directives and appropriateness of a DNR order also fall under the goals-of-care umbrella, McCabe says.

As bioethics nurse Nancy Valko said on my radio show, advance directives were originally devised as a tool to facilitate the cause of euthanasia. Terri Schiavo was starved and dehydrated to death allegedly because she didn’t want any extraordinary measures to be applied to her care if ever she were to be in an impaired state. Which is far down the dark rabbit hole…but that’s another story for another time.

This is supposed to be about respecting choices, and advance directives are supposed to say what a patient doesn’t want done if they wind up impaired or in need of ‘extraordinary care’, and by redefining extraordinary care, pulling treatment can be ‘justified’ as patient choice.

However, choice falls apart when it doesn’t fit the scheme of withholding treatment or protecting life. Look at the end of this article:

Nurses also should understand their own value systems and set them aside when needed, because other considerations in an ethics case may trump personal beliefs.

Valko replies:

Conscience rights are not an optional ‘personal value system’ that can just be ‘set aside when needed.’ Conscience rights are a crucial protection against the ‘whatever is legal (or can be legalized) is ethical’ mentality that is overwhelming medical ethics.

Dr. George reminds anyone who will listen:

Since the life of every human being has inherent worth and dignity, there is no valid category of lebensunwerten Lebens. Any society that supposes that there is such a category has deeply morally compromised itself. As Leon Kass recently reminded us in a powerful address at the Holocaust Museum, it was supposedly enlightened and progressive German academics and medical people who put their nation on the road to shame more than a decade before the Nazis rose to power by promoting a doctrine of eugenics based precisely on the proposition that the lives of some human beings…are unworthy of life.

The new medical ethics are the old eugenics. And they’re not ethical, no matter what some committee decides.

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Apr 03

The death of Terri Schiavo

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It was an eruption in the landscape of America, but far beyond these shores her death six years ago by starvation and dehydration set a new marker for how people treat people who are cognitively impaired, but not dying…

It was the beginning of the change in how we think about dying and life.

Immersing my hands in budding greenery, inhaling the earthy scents—it helped to chase away, for a few moments, the looming death which occupied my mind. Later that evening, watching my sister’s pink newborn suck on his tiny fists, I smiled; it was a welcome break from the tragedy that was flooding the airwaves, and leaving me feeling panicked.

Terri Schindler Schiavo was being dehydrated to death in Florida, and I took it very personally.

The non-stop talk about Schiavo, and the almost blithe way her life was being reduced to what she could “do”—as though her value as a human being hinged upon her utility—had meaning in my life.

It did in the consciousness of America, too. Like those exceptional moments in our history when tragic drama stuck the whole nation, and we remember with acute awareness the details. It was wrenching.

I fought pain in my stomach as I listened to Sean Hannity report from Schiavo’s hospice in Florida. What was a woman my age doing in a hospice, anyway? Until her husband had won a battle to remove her feeding tube, Terri Schiavo had not been dying. After his victory, though, even an act of Congress wasn’t enough to save her life.

Books have been written on this saga, but mine has not yet recounted the details of what should have been a legal case the Supreme Court could not reject…at the risk of going down on historical record for responsibility in a citizen’s death. The details are too dramatic for fiction.

I’ve heard so many such tales from my nurse friend, Nancy Valko, for so many years, I would wonder whether we were irretrivably over the cliff at this point….were it not for invincible hope.

To put it in biblical terms which applies nature’s terms, it takes death to bring about new life.

While some are vigilantly tending the garden.

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Feb 24

Stop killing the disabled

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I remember receiving a notice in March 2005, a warning written by a man in the Netherlands, that if America allows Terri Schiavo to die in the manner that was unfolding so dramatically at the time, Dutch euthanasia would soon come to this country and there would be no stopping it. It has happened more than even he may have foreseen.

There have been so many other Terris since then, and the tireless work her family puts into Terri’s Life & Hope Network is making a remarkable difference in saving individual lives, assisting families of vulnerable and impaired people, and at least doing their best to inform the public and especially the recalcitrant and sometimes delusional media.

The Italian Terri Schiavo was back in the news recently with the news that Eluana Englaro’s death by starvation and dehydration shocked enough Italian sensibilities to put forward an anti-euthanasia law before their Parliament.

Now, it’s Baby Joseph, the child in Canada whose life is threatened by the hour and hangs in the balance between the hospitals eager to pull life-support and the parents desperate to stop them. Here’s the latest as of this writing, and it’s not the least surprising that Terri’s brother Bobby Schindler is at the heart of it.

“The family wants to bring their baby home and they’re being denied,” he explained.  “That’s what our family – we were fighting for the same thing, really.  To bring Terri home and to care for her and show her the compassion that really only a family can do.”

In a statement, the Terri Schiavo Life and Hope Network said “it is unacceptable for Canadian Health Allocation Officials and/or the Canadian Government to make decisions for baby Joseph and his family.”

“Every patient, regardless of age, has a right to proper and dignified health care. It is frightening to once again see government usurp the God given rights of parents to love and care for their child at home,” it added.

Rev. Pat Mahoney of the Christian Defense Coalition called this a human rights issue, and how could anyone claim it is not?

“This is an issue that goes to family, this is an issue about who decides at the end of life issues, and we clearly believe that should be with the family, with the parents,” he told LifeSiteNews.  “So we’re here to support them, we’re here to stand with them, and we’re here to encourage them.”

And help them get Baby Joseph into his family’s care, essentially.

Joseph suffers from a severe neurological disorder, but his specific condition remains undiagnosed.  Doctors have given him no chance of recovery, so his parents, Moe Maraachli and Sana Nader, have asked them to perform a tracheotomy which would enable him to breathe on his own, so that they could take him home.  The doctors have refused, saying the procedure is too risky.

Too risky for what? The child’s health and well-being? The child they’re trying to take off life support? They’re already intending to hasten his death. I saw his father on a television interview today. He said all they want to do is take Joseph home, so he can die peacefully there.  “He’s a human being,” his father emphasized, startled that he has to remind anyone of that. “I accept that he has a problem, but he has rights.” 

The clock is ticking for the family, however, as Joseph’s current hospital has asked Ontario’s Office of the Public Guardian to assume decision-making power after the family refused to have Joseph’s life support removed on Monday.  The public guardian could order it removed at any point.

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Nov 28

Pop media soft-peddling death

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As usual, it’s being done under the disguise of compassion.

This storyline is getting mainstreamed, and even if well-intended, it’s dangerous.

I often think back on the tumultuous year that lapsed between my mother’s announcement that she wanted to “end things” and the night she succumbed to a lack of food and water, along with an intentional overdose of morphine.

The gulf in between is unchartered territory for families who haven’t been there yet, so this story is plausibly their eventual story, and they’re reading with an uneasy but inquisitive interest, no doubt.

What, I wonder, could my sisters and I have done differently? Should we have tried harder to talk her out of it? Insisted that she talk to a psychiatrist? Made sure she didn’t have access to lethal drugs or medications?

These are the kinds of difficult questions that face the friends and relatives of sick and elderly people who express a wish to end their lives. As my sisters and I can testify, the emotions stirred up by such a request can be intense and overwhelming. In our case, they ranged from sadness that our mother found her situation intolerable (she was suffering from advanced Parkinson’s disease), to disappointment that she was “giving up,” to anxiety at the prospect of being there when she did it.

As my friend Nancy Valko points out about this story, which she saw featured on Oprah a while back:

The moral is apparently that when we put our own so-called bias aside and support the suicial person who has “the predictable effects of living with a SERIOUS OR DEBILITATING disease”, we will all benefit. (emphasis added)

Valko says this is dead wrong.

We have to get the point across that suicide is always the wrong “choice” and that we cannot discriminate when it comes to suicide prevention and treatment.

She knows this firsthand, both professionally as a longtime pro-life nurse/bioethics expert and personally as the mother of a young woman who tragically ended her own life.

Suicide is an unmitigated horror that is being soft-pedaled to the public while putting vulnerable people at risk as well as destroying our medical and legal ethics.

Don’t buy into this pop culture PR about ‘death with dignity’ because it isn’t. And what they’re peddling as ‘self-determination’ is nearly always someone else’s determination to hasten death exonerated by semantics.

Take the advice of Terri Schiavo’s family. Don’t wait until it happens to you to get informed about what to do, when it may be too late.

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Sep 29

Loved to death

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Whether there are more Terri Schiavo’s suffering a torturous death by starvation and dehydration these days, or we’re just hearing more about them these days is uncertain. But the manner of such death should be made clear, and the media are certainly not doing that.

The latest case we know of is the ‘bride in a coma’ story. She was young and just married. But what we know through the media is incomplete about Trisha Rushing Duguay’s death is incomplete.

Just 27 years old, she had continued living, remarkably, for eight weeks after her husband and family had, according to her wishes, removed her feeding tube.

Trisha’s father, Jim Rushing, announced the news in an e-mail to family and close friends.

“Trisha has finally departed us on this physical journey to take her branch onto her spiritual journey. This journey has been 132 days in length 56 of those days off of life support. We know that not only her love & caring for others, but the sheer volume of prayer that has occurred will truly help her along this new path. Thank you.

That volume was generated through media coverage of this dramatic story and social communications media that spread it. The good news is that it generated a tremendous amount of prayer. The darker side of this story didn’t make it into the news coverage, as Terri Schiavo’s brother tried to warn people. Bobby Schindler writes:

Terri’s Life & Hope Network expresses concern with the manner in which some media outlets are portraying the situation, treating Trisha’s prolonged death and going without food and hydration-for over 7 weeks now-as an act of compassion.

I think it is important to be reminded that dying this way is not compassionate, peaceful or pleasant. My family witnessed, first hand, something quite the opposite. Terri went through almost two weeks without food and water before she died, and it was heartbreaking. Her death was cruel and barbaric and she suffered horribly. We must continue to educate the general public that food and water is basic and ordinary care and despite ones intentions, it does not change the nature of the act.

That’s a vital point. Food and water are not medical treatments, they’re ordinary care, no matter how they are redefined. People are very confused about this. Conscientious, faithful people are looking for moral guidance in making end of life decisions, and it’s available for all people concerned with preserving and respecting human dignity when it can be toughest to discern that process.

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May 04

Michael Schiavo seeks more attention

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He has surfaced again. And as has been his track record, Schiavo goes about his public campaign for some personal gain in a terribly dysfunctional way that strains credulity and human decency.

If only the big name media were doing their job. There’s such a story in the whole Schiavo saga, and this is only the latest bizarre and disgusting twist.

Michael Schiavo has threatened to sue Terri Schiavo’s family because they named their non profit after her–the “Terri Schindler Schiavo Foundation.”  (MS claims he owns the name. ) And, true to form, an ever compliant media fronted his cause with an unfair attack on the family.

This is jarring. After the media circus went away when he succeeded in torturing Terri to death by dehydration and starvation with a concocted story, he has failed in an attempted political career and whatever else he’s publicly tried to do. Now this.

The snip Wesley Smith posted at his First Things blog is painful to read, so I don’t want to give it continued life here (an ironic choice of words). But this part must be addressed:

Michael Schiavo is talking about the Terri Schindler Schiavo Foundation. While Terri Schiavo’s brother Bobby says the organization is set up to help families in similar situations, Michael Schiavo says he doesn’t believe it. Instead Schiavo says they are using their deceased sister’s name to make money.

Putting aside all the background I have on this story from the beginning and especially through the final months and particularly the legal and judicial malfeasance….at least for the moment, let me tell you something from personal experience.

Any media giving any attention to what Michael Schiavo believes about Terri’s family at this point has no merit beyond the crudely sensational. ‘Using their deceased sister’s name to make money’? I don’t want to dignify this deranged stab and incoherent blather with a response, but here’s a fact….

I hosted ‘America’s Lifeline’ with Bobby Schindler and Suzanne Schindler Vitadamo for a year and a half on the Salem Network, a weekly radio program dedicated to being a voice for the voiceless, advocating for patients’ rights and dignity for the impaired and disabled, giving information and resources and hope to people and populations relegated to fear and hopelessness by a social/medial system that marginalized the vulnerable. We had amazing guests on in the field of bioethics, medicine, social policy, government, pro-life advocacy, patients’ rights, personal witness and legal counsel. We were called ‘cutting edge’, ‘pioneers’, the only radio show out there dedicated to this prescient subject, and a necessary resource that cannot afford to go off the air because of the unique good our show and our guests were doing for human dignity.

Trouble is, we could not afford to stay on the air, because the Terri Schindler Schiavo Foundation relies on donations, and they could no longer even pay the studio rates for the Saturday show. We all worked virtually without pay, and still could not afford to keep the show on the air. So we suspended it for now, hoping to resurrect it and continue Terri’s legacy through the expanded platform that radio provides. Meanwhile, Bobby and the Schindler family works tirelessly to answer all the calls for help and guidance and information through the Foundation. It operates on a thread. We’re all to busy working to put together any kind of development or fundraising effort.

So the audacity of Michael Schiavo’s re-emergence on the public scene to make crass remarks and charges about the family and their work and Terri’s Foundation, is frankly beyond offensive.

Wesley, a frequent guest on ‘America’s Lifeline’, said:

The hatred of this family is pathological and obsessive.

On a personal note: I know Bobby Schindler very well and consider him one of the most decent human beings I have ever met.  His sister Suzanne is a peach, and mother Mary doesn’t have a vindictive or nasty bone in her body.  Father Bob gave everything he had to save his daughter’s life, and seeing her die slowly by intentional dehydration when the family was prepared to love and care for her the rest of her life, destroyed his health and eventually took his life.  I stand wholeheartedly and unreservedly with the Schindler family and against the continual calumny mounted against them.

And I call upon all people of goodwill to speak out against this outrageous assault on life, family, and fundamental human dignity, as well as all that is true and right and good. Michael Schiavo should be marginalized, as the aggressive euthanasia movement (for which he and his attorney played a key role) seeks to marginalize the weak and vulnerable. He should be called out on this, and everything he has done to date against truth and life and constitutional law.

Enough is enough.

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Mar 30

Dysfunctional ‘family guy’

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Anyone familiar with the Fox channel’s satiric show ‘Family Guy’ already knows how irreverent its writers are about real family values and things like respect and common decency, which is growing increasingly uncommon. Just like common sense.

There was none of either – decency or sense – in a recent episode of that show when they tastelessly and offensively ridiculed Terri Schiavo and her end-of-life ordeal that gripped the nation before she passed away, five years ago. Her family’s foundation, which works tirelessly to protect and defend the cognitively impaired, and educate the public who about science, medicine and law we all need to know, made an outcry against the Fox series and commercial sponsors who would support such a degrading show.

In this sketch, Schiavo is mocked and the memory of the suffering she endured ridiculed – portrayed as someone on a number of mechanical life support systems. She is referred to as a vegetable. Both inferences are false regarding Terri’s case! The sketch ends with characters calling for pulling the plug.
 
Terri’s brother, Bobby Schindler stated: “My family was astonished at the cruelty and bigotry towards our beloved sister, and all disabled people that we witnessed in this show. My first thought was how this attempt at satire must have been enormously difficult and painful for my mother.
 
“After further thought, I realized that using my deceased sister as fodder for satire also validates what our family has been saying for many years. There is growing, deep-rooted prejudice against people with brain injuries and other cognitive disabilities. This sort of bare-faced bigotry is dehumanizing to those with disabilities and cruel to those who work tirelessly to ensure that people with disabilities are provided the proper care, protection and respect. People are not vegetables.”
 
Terri Schiavo was not kept alive on mechanical life support. She made use of a feeding tube after some doctors determined it safer for her than swallowing food and fluids on her own.
 
“The depiction of Terri in The Family Guy episode on March 21 is not only inaccurate,” states Schindler, “it seems to take the position that certain people are simply not worthy of receiving medical care because they are viewed as burdens on the health care system.”

And that’s a road we’re about to go down with the sweeping health care legislation now signed into law. Experts familiar with it predict health care rationing – to a degree we have not seen in programs like Medicare and Medicaid – are certain in the forseeable future, and the most vulnerable and needy citizens will be the ones denied limited and costly health resources. The culture of misinformation and distortion in both news and entertainment media are sometimes callous and indifferent, but sometimes worse….when they craft their messages to re-shape public opinion to see cognitively impaired human beings as dependent, costly and of less value than other classes of what they would call ‘healthy.’

Health and care have become increasingly relative terms. When it’s your relative, funny how treatment matters more.

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