Do bioethicists actually read the stories they post on blogs?

bioethics, media issues, Our News & Commentary Blog, vegetative state

Last week, the news broke that the Vatican issued a ruling that “clarified” the Catholic Church’s position on artificial nutrition and hydration in regard to individuals diagnosed as being in a vegetative state. There will be more on this blog about this next week – mostly about some of the “the sky is falling” comments from some ethicists in news stories, and whether or not anything will really change in Catholic health care facilities when it comes to the removal of feeding tubes from people diagnosed with PVS.

But what really caught my eye right off the bat was how fast Kelly Hills posted the Reuters story on the Vatican ruling to the AJOB Bioethics Blog and the Women’s Bioethics Blog. The Reuters article has a really glaring inaccuracy, which doesn’t get a comment from the “experts” at these two blogs. Remembering that the Vatican ruling clearly is making statements about the treatment of people in PVS, see if you can spot what’s wrong with the closing of the Reuters article:

Bioethicists opposed to the unconditional use of feeding tubes argue that such nourishment can keep the bodies of brain-dead patients functioning even though the person is effectively dead. They say this is wrong for both the patient and the family.

The article confuses “brain death” with “vegetative state.” Shouldn’t that be something that the public should be clear on if we are to discuss these issues? I guess maybe Hills and the other folks at the bioethics blogs didn’t bother to read the article. The alternative explanation is that they don’t mind the public getting “brain death” and “vegetative state” confused. –Stephen Drake

Calif.: Another Hospital Death, Documented Neglect and Fraud, But No One Did Anything Wrong

Our News & Commentary Blog, professional accountability

This newest case of apparent death through neglect and malpractice came to my attention by way of Penny Richards at the Disability Studies blog, in “Yes, it can happen. It does happen.”

Penny has some good comments on the death of Linda Sue Brown, and I urge interested people to read them.

But you also need to read the full account of the death of Linda Sue Brown, available at the LA Times (free registration required for access) in a story titled “Two nurses lose sister, find their faith in medical system shaken.”

For 50 years Linda Sue Brown’s nine siblings fiercely protected her, facing down anyone who would taunt her or seek to exploit the disability that left her with the mental capacity of a 12-year-old.

That sense of responsibility only grew after their 81-year-old mother, Brown’s lifelong caretaker, was stricken with Alzheimer’s disease, leaving her unable to tend to her daughter. So when Brown’s lower legs swelled last summer and she grew short of breath, her eldest sister rushed her to a place the family knew and trusted: Brotman Medical Center in Culver City. One of Brown’s sisters, Thelma Allen, worked there as a nurse; another, Rosslyn Diamond, had previously been a nurse there. And Brown had been treated there, successfully, for years.

At the 420-bed hospital, tests revealed that Brown had an enlarged heart, fluid in her lungs and severe anemia, medical records show. She received blood transfusions and, two days later, an emergency hysterectomy. Afterward, Allen was given an unorthodox, but welcome, assignment: She was to be one of Brown’s nurses.

On July 4, after her shift ended, Allen watched TV with Brown, then kissed her good night.

By the time she returned the next morning, her sister was dead.

The death was probably caused by a pulmonary embolism, a clot of blood blocking an artery to the lungs, Diamond recalled the surgeon saying. If so, nothing could have saved her.

For most grief-stricken relatives, the questions would have ended here. Patients die unexpectedly in hospitals every day. If families have vague doubts about why and how, they typically lack the knowledge and access to get answers.

But Diamond, 60, and Allen, 59, vowed to find out what happened to their sister.

Along the way, they discovered that their decades of experience afforded them little advantage over any other bereaved family. Instead, almost everything they believed about the medical profession was turned on end. And ultimately, the answers they battled to get have provided little comfort.

After months of investigation, state health inspectors determined that Brown’s death was nothing so random as an embolism.

Brotman staffers, the inspectors found, had failed Brown in virtually every way: Her nurses — Allen’s colleagues — appear to have forged consent forms and had Brown sign agreements that she couldn’t understand. One failed to call for help as Brown’s vital signs plummeted.

Her doctors didn’t investigate signs of heart failure, performed a risky emergency surgery with no clear justification and then didn’t intervene as her condition deteriorated. And hospital officials didn’t even look into what went wrong until inspectors inquired.

There’s plenty more in this long investigative article.

Like this about the outcome of the investigation by the State Medical Review Board:

In July, the sisters got a final shock: A three-page letter from the state medical board arrived, explaining that its investigation of Brotman physicians was closed. Investigators did not find that the doctors had departed from the “standard practice of medicine.”

Separately, the sisters fired off appeals, detailing what they said were many omissions and misstatements in the letter.

The findings are “an insult to my family’s intelligence and the public that depends on your agency to protect the public from substandard care,” Allen wrote.

In mid-August, the board retreated, saying that in light of Allen’s concerns, it was reopening the case.

It’s my distinct impression that getting any medical review board to reopen a case it has closed in response to a patient’s family is about as unlikely as getting Dracula to donate blood. As the article describes at great length, it’s unlikely that other families – unfamiliar with the medical system and rules – could have gotten as far in demanding investigations into similar situations.

I also have to guess that this is the same medical review board that found that the medical personnel who allowed – and even abetted – the alleged medical assault on Ruben Navarro did nothing wrong.

Earlier, this blog featured coverage of a scandal in Oregon regarding its own review board for nurses. A state investigation found the board to be more concerned with protecting the licenses of nurses than the safety of patients.

Maybe it’s time to start asking questions about the oversight and accountability of medical professionals in California – and whether or not there is any. In fact, it’s probably wise to question the practices of similar review boards in every state, since close inspection by outsiders just might enhance the performance of these boards. –Stephen Drake

Diane Coleman and Steve Gold in Seattle Times Story

bioethics, life-ending decisions, media coverage, Our News & Commentary Blog, Steve Gold

Things are a little behind here, in terms of posting and commenting on news items.

On Sunday, September 16th, Diane Coleman and Steve Gold were quoted in a Seattle Times article titled “Some favor slower right to die for paralyzed.” Not the best title, but a predictable one. An alternative and accurate title might have read “Some want more time, deliberation and information to insure ventilator users who end lives through treatment refusal are truly informed decisions.” But that’s a little long and complicated when you can use a simple piece of jargon like “right to die” as shorthand.

The article resulted from the highly publicized decision Capt. Drew Jensen to end his life on a ventilator after a bullet wound inflicted in Iraq resulted in his total paralysis from the neck down.

Here are some of the comments from Gold and Coleman:

Statistically, spinal-cord patients are more likely to be young and male — hurt in sports, auto accidents or other trauma. Unlike older patients, who may come to be disabled more gradually, they are suddenly forced to imagine a life with grave limitations.

And, most likely, they’ve internalized stereotypes and negative attitudes about disability, said Diane Coleman, president of the national disability-rights group Not Dead Yet.

They and the medical providers who advise them often have had no exposure to paralyzed people who work as engineers, computer programmers or who operate
motorized wheelchairs, she said.

“Two, three months after an injury, you cannot be making an informed decision,” said Stephen Gold, a Philadelphia-area lawyer who represents disabled people. “You just don’t have the experience yet.”

More from Diane here:

Still, society and its influences must be considered, counters Coleman of Not Dead Yet. “I’m not wanting to judge [Jensen] or his family,” Coleman said. “I am wanting to judge our society, and I am prepared to question the medical people, and the people surrounding the actual case.”

In any case involving disabled people, there are issues about support, about finances, about the emotions and motives of patients and family that must be scrutinized, she said.

For example, limits on payments for in-home services, pushing some into unwanted nursing-home care, amount to “coercion,” Coleman said. Some in that situation have felt their only choice was to ask that life support end. “That’s not voluntary choice,” she said.

Disability advocates have long been excluded from discussions of medical-ethics policies, Coleman said. “We’ve only recently been yelling so loudly that they’re being forced to talk with us.”

This article skimmed the surface of a difficult issue with a complex history – a history that has often been distorted. For more information, please check out the following:

  • Unanswered Questions by Mary Johnson – discussion of the cases of Kenneth Bergstedt and Larry McAfee, both of whom were quadriplegic and dependent on ventilators. Both were at the center of battles about their right to have their vents shut off.
  • A bioethicist offers an apology by Howard Brody – discusses his rethinking of the criticisms of disability activists during a prominent vent-removal case involving David Rivlin in Michigan.

Rush to Judgment Ends Lives of Newly Disabled

bioethics, medical decisionmaking, Our News & Commentary Blog

I recently attended a medical ethics seminar held at the Rehabilitation Institute of Chicago that reaffirmed medical practice guidelines about brain injury. Doctors continue to agree that it is necessary to wait before they can predict brain injury outcomes with reasonable, though they also admit not total, certainty. For traumatic brain injury (e.g. car accidents), the waiting period is one year. For anoxic brain injury (e.g. stroke or heart attack), it’s three months.

Many people with disabilities know someone who beat the predictions and amazed the doctors. But those people may become increasingly rare. In fact, evidence is mounting rapidly that the accepted guidelines are not consistently followed.

In yesterday’s blog entry, several major stories involving “rush to judgment” cases were discussed. On an MSNBC blog entry related to the Jill Finley case, several people told stories involving similar scenarios – with “mixed” outcomes. We also get calls from families several times a year – families feeling pressured by doctors to remove the life support from a family member mere weeks or even days post-injury.

Discussing the medical advice in the Jesse Ramirez case, Dr. Steven Miles referred to early decisions to end someone’s life as “malpractice” and “unusual.” Between the news stories and the phone calls we get, I don’t think that these scenarios are “unusual” any more.

Dr. Joel Frader is the current president of the Chicago End-of-Life Care Coalition. Frader co-authored a 2004 article with James L. Nelson, a bioethicist at Michigan State University. The authors bemoaned the difficulty of predicting outcomes “at those times during the course of treatment when there may be a ‘convenient’ window of opportunity to stop interventions and allow a patient to die.” (Nelson and Frader, “Brain Trauma and Surrogate Decision Making: Dogmas, Challenges, and Response,” Journal of Clinical Ethics, Vol. 15, No. 4, 264-276.) “A convenient window of opportunity” to cause death by omission before someone objects or the individual shows “too many” signs that recovery is underway, though he or she may be permanently disabled to some extent? This suggests that the “better dead than disabled” philosophy may be gaining wider acceptance within the medical profession than the public has been led to believe.

Frader and Nelson also questioned what they call the “orthodoxy” of taking only the patient’s perspective into consideration in health care decision making, without also considering the burdens to family caregivers. This intentionally echoes the arguments and sentiments of philosopher John Hardwig, author of the infamous “Is There a Duty to Die?”. (Hardwig’s answer is “yes,” demonstrating that a communitarian ethical framework can be just as hostile to the lives of people with disabilities as utilitarian ones.)

The pressures seem to be mounting. In a recent New York Times article (Jane Brody, “The Solvable Problem of Organ Shortages”), Dr. Robert Steinbrook, a consultant with the New England Journal of Medicine, reportedly said “potential donors included patients on ventilators after devastating and irreversible brain injuries, as might follow a hemorrhagic stroke, as well as patients with high spinal cord injuries and terminal musculoskeletal diseases like ALS, for whom further medical treatment is deemed futile.” Like Ruben Navarro? Readers of this blog will hopefully recall that Navarro – five days into a coma – was enlisted as an organ donor under the NHBD protocol. He continued breathing after removal of his ventilator and a transplant surgeon is now facing multiple criminal charges for allegedly trying to “hasten” his death.

Brody went on to write, “These patients are technically not dead. But if they are considered suitable donors and the families agree to donation, life-support measures are ended. …If the heart does not stop within a reasonable time, planned donations have to be canceled, which occurs in about one in five cardiac deaths.” We can safely assume, though, that the deaths proceed as scheduled.

Isn’t it time for some open public discussion about how the medical profession is making these judgments, and how they should be made? —Diane Coleman

Miracles, Malpractice, Survivors and Recovery

bioethics, coma, life-ending decisions, Our News & Commentary Blog, vegetative state

Last week, during the national ADAPT Action here in Chicago, several people forwarded one of those stories that brought to mind Yogi Berra’s “This is like deja vu all over again.”

The story that provoked this “I’ve seen this before” feeling was about Jill Finley, who came out of a coma – 14 days after its onset and after her husband had ordered removal of life-support after some not-so-subtle nudges from the physicians:

Doctors wouldn’t come right out and say that the situation was hopeless, but they did say that only one to two percent of such cases recovered to live normal lives.

“It was grim,” Ryan told Vieira. “I’ll put it that way. Everything they told me was grim.”

Ryan Finley found his wife unconscious and unresponsive one morning and administered CPR he had learned many years earlier. They now know Jill has a condition that causes her heart to stop beating and now has a pacemaker to correct for the condition.

In the same story, Jill Finley told Meredith Vieira that it was a “miracle” for her to be alive and talking.

She might be right, but probably not for the reasons she’s thinking.

The past year or so has had stories of other people written off early after going into a coma. Back in June of this year, we had the story of Jesse Ramirez. He suffered traumatic brain injury in an automobile accident. His wife, acting on the negative prognosis given to her by physicians, ordered the removal of her husband’s feeding tube a little over a week after his injury. Other members of the family contested her action, which bought valuable time, time in which Jesse Ramirez started to recover:

His siblings and parents refused to give him up for dead, and today, Jesse Ramirez is alive and conscious.

Two weeks ago, he was the center of a family battling over of whether he should live or die.

Now, he can hug and kiss, nod his head, answer yes and no questions, give a thumbs-up sign and sit in a chair.

Some family members, quoted in media reports, called the recovery of Jesse Ramirez “a miracle.”

In an ABC News story attempting to explore the ethical implications of the Ramirez case, Dr. Steven Miles gave a frank assessment of apparent rush to end the life of Jesse Ramirez:

“This case is about a hasty clinical decision which should have never been made,” he says. “In terms of the process itself, stopping the feeding tube this close in time to the injury is actually pretty unusual.

“This is about malpractice, not about a persistent vegetative state.”

It’s gratifying to see Miles call the medical advice in the Ramirez case for what it is. However, I have to wonder if he really can support his assertion it’s “unusual” for doctors to be pushing for treatment withdrawal so soon after an injury. The Ramirez case only became public because of a legal battle between family members. His recovery was made possible because of the court order stopping the removal of the feeding tube.

It seems reasonable to assume that in most cases, family members reach agreement, and no one other than they and the doctors who gave them advice know about what happened. Cases like Jesse Ramirez and Jill Finley could be rare – or they could be the tip of a large iceberg.

There’s one more case that should be mentioned in this context. In January, 2006, a judge ruled that 11-year-old Haleigh Poutre should be entitled to “pass away with dignity.” The Department of Social Services had sued to end Poutre’s life-support less than two weeks after alleged abuse by her adoptive parents put her into a coma. Her physicians at Baystate Medical Center described her as “virtually brain dead.” One day after the judge’s ruling, verified reports came out of the hospital that Haleigh was conscious and responding to commands. She would never have had the time to recover without the suit brought by the person charged with abusing her, challenging the state’s authority to end her life. Her death and the decision that authorized it would have just been one more “end of life” case.

There was considerable fallout in the Poutre case, but most of it fell on the Department of Social Services. The physicians at Baystate Medical Center avoided being challenged by the press and the public. The same kind of failure we see in the kinds of things not being asked of the physicians who were in charge of caring for Jesse Ramirez and Jill Finley.

The next time you see a story like that of Finley, Ramirez, or Poutre, avoid thinking of them as “miracles” and think of them as survivors. And let’s ask their doctors how many other patients they’re treating aren’t quite so lucky. –Stephen Drake