DESIRES of the
What Patients Actually Want




WE have noted that the greatest support for euthanasia and assisted suicide comes from persons who fear:

1."future loss of control, being or becoming a burden to others, or being unable to care for oneself" (Foley, "Competent Care" 1997);

2. "a loss of autonomy and dignity and an inability to engage in activities that give their life meaning." (Prokopetz, "Redefining Physicians' Role" 2012)

To put it another way, the majority of those who actively support euthanasia are not themselves in the terrible situations they fear: rather, they assume that if they were severely disabled or minimally conscious they would then prefer not to be alive.  And they assume that the majority of those who are actually in those situations would agree with their assessment that such disability is intolerable.  Relatives of patients in persistent vegetative states are often pressured to withdraw nutrition and hydration from their loved ones so they can "die with dignity".  Some neurologists even advocate withdrawal of nutrition and hydration from minimally conscious patients, who are intermittently aware of their surroundings and are able to understand and use language to a limited extent.

However, when disabled or minimally-conscious persons are permitted or enabled to express their views on the subject, they generally prefer not to be killed.  The abhorrence felt by the able-bodied at the prospect of physical or mental disability does not always persist when such persons become disabled.  Furthermore, it is becoming increasingly clear that misdiagnosis of the persistent vegetative state is very common (up to 40% in one study), and that some patients who are correctly diagnosed as PVS are sometimes aware of their surroundings and able to respond to questions.


11.1. David Albert Jones on Stem Cells and the Catholic Church






   Suicide by Choice? Not So Fast


Ben Mattlin






Suicide by Choice? Not So Fast, The New York Times, November 1, 2012 Op-Ed Contributor By BEN MATTLIN Published: October 31, 2012

NEXT week, voters in Massachusetts will decide whether to adopt an assisted-suicide law. As a good pro-choice liberal, I ought to support the effort. But as a lifelong disabled person, I cannot.

There are solid arguments in favor. No one will be coerced into taking a poison pill, supporters insist. The “right to die” will apply only to those with six months to live or less. Doctors will take into account the possibility of depression. There is no slippery slope.

Fair enough, but I remain skeptical. There’s been scant evidence of abuse so far in Oregon, Washington and Montana, the three states where physician-assisted death is already legal, but abuse — whether spousal, child or elder — is notoriously underreported, and evidence is difficult to come by. What’s more, Massachusetts registered nearly 20,000 cases of elder abuse in 2010 alone.

My problem, ultimately, is this: I’ve lived so close to death for so long that I know how thin and porous the border between coercion and free choice is, how easy it is for someone to inadvertently influence you to feel devalued and hopeless — to pressure you ever so slightly but decidedly into being “reasonable,” to unburdening others, to “letting go.

Perhaps, as advocates contend, you can’t understand why anyone would push for assisted-suicide legislation until you’ve seen a loved one suffer. But you also can’t truly conceive of the many subtle forces — invariably well meaning, kindhearted, even gentle, yet as persuasive as a tsunami — that emerge when your physical autonomy is hopelessly compromised.

I was born with a congenital neuromuscular weakness called spinal muscular atrophy. I’ve never walked or stood or had much use of my hands. Roughly half the babies who exhibit symptoms as I did don’t live past age 2. Not only did I survive, but the progression of my disease slowed dramatically when I was about 6 years old, astounding doctors. Today, at nearly 50, I’m a husband, father, journalist and author.

Yet I’m more fragile now than I was in infancy. No longer able to hold a pencil, I’m writing this with a voice-controlled computer. Every swallow of food, sometimes every breath, can become a battle. And a few years ago, when a surgical blunder put me into a coma from septic shock, the doctors seriously questioned whether it was worth trying to extend my life. My existence seemed pretty tenuous anyway, they figured. They didn’t know about my family, my career, my aspirations.

Fortunately, they asked my wife, who knows exactly how I feel. She convinced them to proceed “full code,” as she’s learned to say, to keep me alive using any and all means necessary.

From this I learned how easy it is to be perceived as someone whose quality of life is untenable, even or perhaps especially by doctors. Indeed, I hear it from them all the time — “How have you survived so long? Wow, you must put up with a lot!” — even during routine office visits, when all I’ve asked for is an antibiotic for a sinus infection. Strangers don’t treat me this way, but doctors feel entitled to render judgments and voice their opinions. To them, I suppose, I must represent a failure of their profession, which is shortsighted. I am more than my diagnosis and my prognosis.

This is but one of many invisible forces of coercion. Others include that certain look of exhaustion in a loved one’s eyes, or the way nurses and friends sigh in your presence while you’re zoned out in a hospital bed. All these can cast a dangerous cloud of depression upon even the most cheery of optimists, a situation clinicians might misread since, to them, it seems perfectly rational.

And in a sense, it is rational, given the dearth of alternatives. If nobody wants you at the party, why should you stay? Advocates of Death With Dignity laws who say that patients themselves should decide whether to live or die are fantasizing. Who chooses suicide in a vacuum? We are inexorably affected by our immediate environment. The deck is stacked.

Yes, that may sound paranoid. After all, the Massachusetts proposal calls for the lethal dose to be “self-administered,” which it defines as the “patient’s act of ingesting.” You might wonder how that would apply to those who can’t feed themselves — people like me. But as I understand the legislation, there is nothing to prevent the patient from designating just about anyone to feed them the poison pill. Indeed, there is no requirement for oversight of the ingestion at all; no one has to witness how and when the lethal drug is given. Which, to my mind, leaves even more room for abuse.

To be sure, there are noble intentions behind the “assisted death” proposals, but I can’t help wondering why we’re in such a hurry to ensure the right to die before we’ve done all we can to ensure that those of us with severe, untreatable, life-threatening conditions are given the same open-hearted welcome, the same open-minded respect and the same open-ended opportunities due everyone else.

Ben Mattlin is a freelance journalist and the author of “Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity.”


11.3. Magisterial Support of Stem Cell Research: Opposition to Destruction of Embryos











In 2009 an article appeared in the New England Journal of Medicine describing frequent misdiagnoses of disorders of consciousness.  The authors also reported that nearly 20% of patients in their study who had been diagnosed as being in a persistent vegetative state were able to respond to simple commands.  Research by other groups has confirmed these findings and attempts to find accurate and inexpensive tests that will aid in these diagnoses is ongoing.


Monti, Vanhaudenhuyse, Coleman, et al,
ew England Journal of Medicine, Feb. 3, 20092


Background The differential diagnosis of disorders of consciousness is challenging. The rate of misdiagnosis is approximately 40%, and new methods are required to complement bedside testing, particularly if the patient’s capacity to show behavioral signs of awareness is diminished.

Methods At two major referral centers in Cambridge, United Kingdom, and Liege, Belgium, we performed a study involving 54 patients with disorders of consciousness. We used functional magnetic resonance imaging (MRI) to assess each patient’s ability to generate willful, neuroanatomically specific, blood-oxygenation-level–dependent responses during two established mental-imagery tasks. A technique was then developed to determine whether such tasks could be used to communicate yes-or-no answers to simple questions.

Results Of the 54 patients enrolled in the study, 5 were able to willfully modulate their brain activity. In three of these patients, additional bedside testing revealed some sign of awareness, but in the other two patients, no voluntary behavior could be detected by means of clinical assessment. One patient was able to use our technique to answer yes or no to questions during functional MRI; however, it remained impossible to establish any form of communication at the bedside.

Conclusions These results show that a small proportion of patients in a vegetative or minimally conscious state have brain activation reflecting some awareness and cognition. Careful clinical examination will result in reclassification of the state of consciousness in some of these patients. This technique may be useful in establishing basic communication with patients who appear to be unresponsive.

In summary, the results of this study show the potential for functional MRI to bridge the dissociation that can occur between behavior that is readily observable during a standardized clinical assessment and the actual level of residual cognitive function after serious brain injury.14,15,16 Thus, among 23 patients who received a diagnosis of being in a vegetative state on admission, 4 were shown to be able to willfully modulate their brain activity through mental imagery; this fact is inconsistent with the behavioral diagnosis. In two of these patients, however, subsequent assessment at the bedside revealed some behavioral evidence of awareness, a finding that underscores the importance of thorough clinical examination for reducing the rate of misdiagnosis in such patients. Nonetheless, in the two remaining patients, no evidence of awareness could be detected at the bedside by an experienced clinical team, even after the results of the functional MRI examination were known. This finding indicates that, in some patients, motor function can be so impaired that bedside assessments based on the presence or absence of a behavioral response may not reveal awareness, regardless of how thoroughly and carefully they are administered. In patients without a behavioral response, it is clear that functional MRI complements existing diagnostic tools by providing a method for detecting covert signs of residual cognitive function17,18,19,20 and awareness.10

In addition, this study showed that in one patient with severe impairment of consciousness, functional MRI established the patient’s ability to communicate solely by modulating brain activity, whereas this ability could not be established at the bedside. In the future, this approach could be used to address important clinical questions. For example, patients could be asked if they are feeling any pain, and this information could be useful in determining whether analgesic agents should be administered. With further development, this technique could be used by some patients to express their thoughts, control their environment, and increase their quality of life.


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