Frame of mind

Phrenology chart,

One of the most important ways in which stories favor one perspective or another is in how they are framed. Which “side” of an issue does a story begin with? How is that side presented? After story selection itself (deciding which stories to report on and which to bypass), framing is one of the most important decisions journalists make.

I thought of that when reading this highly informative piece in the Chicago Tribune:

If ever Carol Gaetjens becomes unconscious with no hope of awakening, even if she could live for years in that state, she says she wants her loved ones to discontinue all forms of artificial life support.

But now there’s a catch for this churchgoing Catholic woman. U.S. bishops have decided that it is not permissible to remove a feeding tube from someone who is unconscious but not dying, except in a few circumstances.

People in a persistent vegetative state, the bishops say, must be given food and water indefinitely by natural or artificial means as long as they are otherwise healthy. The new directive, which is more definitive than previous church teachings, also appears to apply broadly to any patient with a chronic illness who has lost the ability to eat or drink, including victims of strokes and people with advanced dementia. …

Gaetjens, 65, said she did not know of the bishops’ position until recently and finds it difficult to accept.

“It seems very authoritarian,” said the Evanston resident. “I believe people’s autonomy to make decisions about their own health care should be respected.”

The story goes on to explain this directive from the bishops and how it would affect Catholic hospitals.

But there was something rather significant that was missing from this story.

Just last week, the Los Angeles Times reported on a new study — a study containing all kinds of religious ghosts — that certainly should have been mentioned in this Chicago Tribune article:

In a study certain to rekindle debate over life-sustaining care for those with grievous brain injuries, researchers report that five patients thought to be in a persistent vegetative state showed brain activity indicating awareness, intent and, in at least one case, a wish to communicate.

Of 54 unresponsive patients whose brains were scanned at medical centers in England and Belgium, those five appeared able, when prompted by researchers, to imagine themselves playing tennis, and four of them demonstrated the ability to imagine themselves walking through the rooms of their homes.

One of those patients — a 22-year-old man who had been unresponsive for five years after an automobile crash — went on to respond to a series of simple questions with brain activity that clearly indicated yes or no answers, researchers said.

Last week, Reuters had another story about a 29-year-old man in a persistent vegetative state:

A man in a deeply unconscious state for five years has been able to communicate with doctors using just his thoughts in a study scientists say is a “game changer” for care of vegetative state patients.

Apparently researchers asked specific questions that would have objective answers (e.g. “Is your father’s name Thomas?”) and could tell whether the yes-answering portion of the brain lit up or the no-answering portion of the brain. Fascinating stuff.

Or do you remember this story from November?

A car crash victim has spoken of the horror he endured for 23 years after he was misdiagnosed as being in a coma when he was conscious the whole time.

Rom Houben, trapped in his paralysed body after a car crash, described his real-life nightmare as he screamed to doctors that he could hear them – but could make no sound.

‘I screamed, but there was nothing to hear,’ said Mr Houben, now 46, who doctors thought was in a persistent vegatative state.

Nowhere in the Tribune piece is the news from last week mentioned, much less any indication that people diagnosed as being in persistent vegetative states might be aware, intentional and desiring communication. That omission really hurts the article.

The bottom line: It’s one thing to frame a piece to be favorable to those who oppose the Catholic Church’s view that the severely disabled should not have nourishment withheld from them. But to not mention some of the recent breakthroughs the medical community has seen in communicating with the so-called vegetative does not serve readers well.

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  • http://www.acupuncturebrooklyn.com Karen Vaughan

    I think that the articles I have seen do a poor job in (1) distinguishing a persistent vegetative state from a coma or brain death and (2) looking at the implications of what that might mean for the person involved. Just because there are remnants of consciousness- and it is clear that this goes beyond mere brain glucose burning- doesn’t mean that there is any possibility of recovery. I have seen very little coverage of the Catholic or other religious response to what is exciting but very preliminary information.

    Incidentally I wrote a blog entry on the physiological and ethical issues at http://www.acupuncturebrooklyn.com/alternative-health/communication-in-a-persistent-vegetative-state

  • http://www.acupuncturebrooklyn.com Karen Vaughan

    BTW the link for the Tribune article is fouled: http://www.chicagotribune.com/health/ct-met-catholic-hospitals-20100208,0,3456275.story is the correct link.

  • Martha

    It does seem phrased as though the cases of “any patient with a chronic illness who has lost the ability to eat or drink, including victims of strokes and people with advanced dementia” are secondary or after-thoughts to the directive, which of course is not so.

    But yes, this is in direct response to the Terri Schiavo case, and it’s implementing a directive from the Congregation of the Doctrine of the Faith in 2007, which the story does mention at the very end.

    It’s actually a fairly reasonable job of journalism; they do go into the reasoning behind why the Church teaches this; I just wish – though I see why they do it – they wouldn’t lead off with the puppies’n'kitties human-interest anecdote about the (potential) suffering a nice lady may (possibly, if it ever happens that she does indeed succumb to a persistent vegetative state, and there’s nothing apart from her age meaning that this is a consideration for her future to suggest that it will) undergo and then leave the actual reasons at the very, very end of a three-page story.

    That Vatican directive:

    “RESPONSES TO CERTAIN QUESTIONS
    OF THE UNITED STATES CONFERENCE OF CATHOLIC BISHOPS
    CONCERNING ARTIFICIAL NUTRITION AND HYDRATION

    First question: Is the administration of food and water (whether by natural or artificial means) to a patient in a “vegetative state” morally obligatory except when they cannot be assimilated by the patient’s body or cannot be administered to the patient without causing significant physical discomfort?

    Response: Yes. The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life. It is therefore obligatory to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way suffering and death by starvation and dehydration are prevented.

    Second question: When nutrition and hydration are being supplied by artificial means to a patient in a “permanent vegetative state”, may they be discontinued when competent physicians judge with moral certainty that the patient will never recover consciousness?

    Response: No. A patient in a “permanent vegetative state” is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.”

  • http://www.acupuncturebrooklyn.com Karen Vaughan

    Martha, I think the puppy and kittens lead-in is a pretty standard hook to get people to read what could otherwise be a dry discussion of the new Vatican directive. People seem to have a distinct preference for learning by an illuminating story. (Parables were used similarly by Jesus.) And since Carol Gaetgens has MS and works in a hospice, it is not such a reach.

  • Peter

    But to not mention some of the recent breakthroughs the medical community has seen in communicating with the so-called vegetative does not serve readers well.

    These are anecdotes, not breakthroughs.

    Since the story is about Catholic doctrine’s new demands, are these anecdotes even relevant unless they somehow shape the church’s thinking? Did the Catholic church decide to toughen (or clarify) its stand based on these anecdotes, or was it based on longstanding-Catholic thinking about life? Unless there is a connection, I’m not sure that the story is weakened by not posing a few anecdotes.

  • Jerry

    The story you mentioned might or might not be relevant to the story itself. It’s not clear that the new information would have resulted in any change to the directive.

    On the the other hand, the finding that people in a coma might be able to communicate is very interesting and needs to be replicated and presumably affect decisions that all doctors and family members need to be aware of.

    It’s important to note that the Terri Schiavo situation was mentioned in the brain wave story:

    Nor does the finding apply to victims of severe oxygen depletion, like Terri Schiavo,

    http://www.nytimes.com/2010/02/04/health/04brain.html

    The link is the underlying question: what is “life”? Does it mean a functioning brain or a body where the brain is dead? The brain wave story takes us one more step to differentiating that question. But, as I noted, that might not be relevant to Catholic theology.

  • michael

    The recent ‘results’–is that neutral enough?–suggesting the possibility in communicating with patients in an apparent vegetative may or may not amount to a scientific ‘breakthrough’. It’s too early to tell. But from the point of view of Catholic bioethics the point is somewhat indifferent, since the dignity of the person derives from his being a human being and does not depend on his ability to cognize something we might recognize as thought. So I doubt these recent announcements have much to do with the Bishop’s clarification; rather I suspect that it follows both from the shifting medical definitions of death and the ever more complex battery of ways to prolong life artificially.

    So it is arguable whether these findings belong in this story, though they are surely no more than ‘anecdotal’ than the wishes of Ms. Gaetjens, unless the real, half-stated point of the story is to present the Church’s interventions in these matters as ‘authoritarian.’

    Do you suppose there are any faithful Catholics out there who are relieved that the Bishops have clarified their responsibilities in these extraordinarily difficult situations?

  • Brian Walden

    For an article that is built around contrasting the Catholic Church’s position with those who disagree, the article does a very poor job of explaining the Church’s position.

    The article constantly uses words that have one meaning in secular use and another in Catholic use without any clarification:

    The new directive, which is more definitive than previous church teachings

    A USCCB document is not what a Catholic would call Church teachings. Church teachings are the underlying moral principles (Human life has intrinsic dignity which isn’t based on one’s ability to perform certain functions, it’s immoral to take an innocent life, we have a duty to help provide for the basic needs of our neighbors, etc.). These moral principles are never even explained in the article, the Church’s side is simply presented as a list of do nots.

    …[Catholic Medical Institutions] are bound to honor the bishops’ directive, issued late last year, as they do church teachings on abortion and birth control…

    Yes, the underlying principle that taking an innocent life is always immoral is the same one behind the Church’s stance here and on abortion, but the decision to remove feeding tubes is based on our scientific understanding of the body and our medical technology. The directive on feeding tubes is just the application of the moral principle, if our knowledge of the body somehow changes to show that feeding tubes are actually harmful the directive will change. Plus, the USCCB is not a teaching authority, as Bishop Martino infamously noted, the Bishop and not the USCCB is the teaching authority in each diocese. So Catholics are not bound to honor this directive in the same way that they are the Church’s teachings on abortion and contraception.

    The article also often quotes people who display first principles that are obviously in conflict with the Catholic Church without giving the Church’s position. At least give a quick summary of the Church’s stance in a few words.

    “It seems very authoritarian,” said the Evanston resident. “I believe people’s autonomy to make decisions about their own health care should be respected.”

    The real issue here isn’t people’s autonomy concerning their health care – I don’t think either side is trying to compromise that; the real question is what constitutes health care? Gaetjens considers intentional starvation to be health care. The Catholic Church doesn’t.

    “I think many (people) will have difficulty understanding how prolonging the life of someone in a persistent or permanent vegetative state respects the patient’s dignity,” said Dr. Joel Frader

    Again, first principles are never examined. Dr. Frader believes human dignity is based in some way on mental capacity, the Catholic Church believes our dignity is intrinsic in our humanity.

    She said she has told her sister and a close friend that she does not want “heroic measures” undertaken on her behalf at the end of life.

    No explanation of what heroic measures means. I think it was put in scare quotes because the reported didn’t ask what she meant by it. This is another case where Gaetjens and the Catholic Church agree, one isn’t required to take heroic measures to prolong their life. The difference is over what constitutes heroic measures.

    “My pleasure is in being part of the human race,” she said. “If that’s gone, if I can’t interact with other people, even if they could give me nutrition and keep me hydrated, I’m not interested in being preserved.”

    Come on, this quote has so much that could be examined, and it’s just stuck in there and passed by. Is pleasure the purpose of life? Does life have meaning if you can’t interact with others? These are the true issues in this article, the feeding tubes are just one particular instance where they’re under debate.

    “If there is no hope of recovery for me, if I’ve lost my active mental life, I don’t see any reason to keep my body alive,” he said. “I would prefer to die a peaceful death.”

  • Brian Walden

    Sorry, I accidentally, hit sumbit. Anyway my basic point is in there. The real issue here isn’t feeding tubes, it’s the first principles. The article doesn’t touch them for either side, it just focuses on the feeding tubes.

    One last thing, I think the Church’s position could have be easily explained in a sentence or two by comparing an oxygen tank with a respirator. With oxygen the person’s lungs are able to breathe on their own, they just need help getting enough oxygen in. With a respirator, the person’s lungs aren’t working – the machine is doing all the breathing. The Church sees a feeding tube and IV needle more akin to an oxygen tank than a respirator – you shouldn’t deprive a body of these basic necessities if they’re able to benefit from them. Some sort of quick explanation like this could have saved a lot of space which could have been used to fit in more quotes about peoples feelings (which are apparently what sells papers because that’s pretty much what this whole article was).

  • dalea

    Interestingly, the Trib story does go into the problems associated with feeding tubes but only tangentially. Since they seem to be the central point of the new directives, it would be helpful to have a great deal more information on them. From what I have seen, feeding tubes create as many if not more problems, than they solve. The one that goes directly into the stomach, in instances I have seen, usually gets an untreatable infection. I have known at least 5 people who died from that. Feeding tubes are not without their own problems. Especially when used for long periods of time.

    Interesting articles on the intersection of religion and medicine. It could have used a lot more information on how the science and practice actually work.

  • dalea

    From the Trib:

    Q. Who decides if a feeding tube is “excessively burdensome” and therefore not warranted?

    A. That’s up to the patient, but it isn’t as simple as, “I don’t like it and I don’t want it.” There have to be discernible physical, emotional or financial hardships for the patient, according to Joseph Piccione of OSF Health Care. Those hardships must outweigh the potential benefits.

    This is the only mention of how this is paid for, which seems odd in an article on healthcare. There is no discussion of just how much it costs to keep a persistently vegitative patient alive.

  • dalea

    Heroic measures is a medical term that has a definition which is clear and understandable. From Wikipedia:

    http://en.wikipedia.org/wiki/Heroic_measure

    In medicine, heroic refers to a treatment or course of therapy which possesses a high risk of causing further damage to a patient’s health, but is undertaken as a last resort with the understanding that any lesser treatment will surely result in failure. [1]

    Heroic measures are often taken in cases of grave injury or illness, as a last-ditch attempt to save life, limb, or eyesight. Examples include emergency trauma surgery conducted outside the operating room (such as “on-scene” surgical amputation, cricothyroidotomy, or thoracotomy), or administration of medication (such as certain antibiotics and chemotherapy drugs) at dosage levels high enough to potentially cause serious or fatal side effects.[2][3]

    A doctor explains:

    http://www.mentalhelp.net/poc/view_doc.php?type=doc&id=11994&cn=174

    Due to ethical and legal concerns, hospitals have established very clear policies about the use of heroic measures. In the past, medical professionals have been sued by families for allowing a patient to die when the family believed the hospital could have prevented the death if only they had continued to provide care. Therefore, hospitals tend to use all heroic measures available to them unless there is a healthcare directive in place, or the family is willing to sign a document stating that they do not want such measures used and that they are releasing the hospital from any liability if the patient dies.

    Actual examples of heroic measures:

    http://ats.ctsnetjournals.org/cgi/content/full/87/1/11

    http://www.healthline.com/blogs/emergency_room/2008/09/heroic-measures.html

    The term has a clear medical meaning.

  • Gary

    dalea is correct about feeding tubes. My dad had severe dementia and kidney failure and heart failure. The feeding tube was causing him much suffering, and the doctors refused to keep the tube in. We placed my dad in a hospice located in a Roman Catholic hospital. How will this new directive impact a hospice located in a Roman Catholic hospital?

  • http://www.tmatt.net tmatt

    Back to the journalism issues, folks.

  • lina

    I have been living in a third world country for almost 23 years. Medical care is not all the advanced stuff that now exists in the USA. People are allowed to die gracefully and peacefully. Dying seems to be part of life. It is a natural transition that everyone must go through. As Christians we believe that we are going on to a better place. Reading all the above makes me wonder if in the USA we are trying to play God and and hold off death as long as possible instead of allowing death to take its course. One of my uncles was suffering from terminal cancer. Three times he came down with pneumonia and three times he was put in ICU. For what? To prolong the agony? It used to be that pneumonia was the great friend of the dying.

    Christ has risen from the dead trampling down death by death! Whoopee! What are we afraid of?

  • Dan Crawford

    The article is yet another indication that reporters on these matters haven’t a clue, and really don’t want a clue. Instead, we get an article propagandizing the dominant ethical code of our day: Feelings. (Phil Donahue used to get teary-eyed when he heard the song – it sums up his entire life philosophy and apparently the dominant ethical position of reporters on ethical matters.)

    It is appalling that the reporter didn’t cite the what medicine is learning about persistent vegetative states. When writing about abortion, they don’t write about women who choose not to have abortions, survivors of abortion procedures, or the procedures themselves. When writing about any issue about which religion may have something to say, they fall into describing feelings. It’s easier and provides readers with what they want to know. Like our politics, our discussion of matters of life and death has been reduced to the level of a bumper sticker.

  • http://goodintentionsbook.com Bob Smietana

    Mollie:

    A journalism question.

    Do you see the Trib story as a general report on the new rules from the bishops? Or a more narrowly focused story about how those rules would conflict with advanced medical directives from patients with terminal disease.

    The lead anecdote about Carol Gaetjens seems to indicate a more narrowly focused story, as does this graph, which seems to be the nut graph of the story.

    What happens, for example, if a patient’s advance directive, which expresses that individual’s end-of-life wishes, conflicts with a Catholic medical center’s religious obligations?

    This graph also points to that more narrow focus. It would have helped if it had been been higher in the story, because it seems to get to the heart of the matter:

    Of particular concern is whether Catholic medical centers will honor an advance directive stating broadly that a person does not want a feeding tube inserted

    .

    The discoveries about the recent discoveries about brain scans on people in permanent vegetative states would make a great follow-up story. William Saletan at Slate did a fabulous post on that topic.

  • Dave

    This new ability to communicate with a conscious brain in a vegetative body could undermine the need for advance directives. The patient could potentially be consulted even in that state. Journalism needs to run down how that would affect both sides of the heroic-measures dialogue. (BTW, the phrase “heroic measures” was used in a Papal statement, but I forget which Pope.)

  • Amelia

    I’m going to have to disagree with lina on this one. You stated that dying seems to be a part of life, and everyone goes through it, which is true, but why so eager to go? I myself am a Christian who believes that when I die, I will be going to a better place, but I am also not rushing it. I feel as though the intentions of the USA are not to play God, but instead to help a patient survive. Like stated in the article, if a person wasn’t ready to die like the ones who were really not in a coma or could hear the doctors, just couldn’t speak, is it fair to say they shouldn’t live just because they ended up in a situation where they have potential of dying? It’s a different story if there is no chance of them living and they are uncomfortable. But whose to say when you’re ready to die? God always has a plan for you, so if living longer is what you’re going through, then that’s all part of the plan. Everything happens for a reason, no one can postpone death, it’s out of their hands.