TWEETING DR. VARTABEDIAN

About a year ago, the Community Ethics Committee wrapped up a report on usage of social media by medical professionals. The way and speed at which social media is evolving, it’s a subject bound to make its way back into the CEC dialogue in some form.

Bryan Vartabedian, a pediatric gastroenterologist at Texas Children's Hospital/Baylor College of Medicine, blogs regularly about the convergence/collision of medicine and social media. Recently, a patient’s mother had a creative way to get his attention: She tweeted him. How he handled it is worth a read. http://33charts.com/2010/11/patients-contact-twitter.html

MOLST IN MASSACHUSETTS

“The coming thing for patients near the end of life in Massachusetts is a new official form that lets them discuss and document their choices for life-sustaining treatments — based on their own needs, their own preferences and what is medically appropriate. I think of it as the final menu.” (Carey Goldberg for Commonhealth. For more, see http://commonhealth.wbur.org/2010/11/end-of-life-menu/)

END-OF-LIFE CANCER CARE

If elderly patients with incurable cancer would rather die at home, why do so many die in hospitals? Perhaps some of the answer is found in this odd truth that Atul Gawande has written about: Patients can understand a terminal diagnosis without accepting that they’re dying. The stated wish to die at home may be in conflict with, and even negated by, the desire to live as long as possible.

But where a patient lives in proximity to a medical center also impacts the likelihood that hospice care will be part of the end-of-life conversation, according to a report from the Dartmouth Atlas Project. The project’s first report on cancer care at the end of life studies quality of such care among medicare beneficiaries. The findings include:

+ “Even among the nation’s leading medical centers, there is no consistent pattern of care or evidence that treatment patterns follow patient preferences.”

+ “Many hospitals and physicians aggressively treat patients with curative attempts they may not want, at the expense of improving the quality of their last weeks and months.”

+ Clarity in communication is crucial. Patients want “honest conversations with their providers, ... balanced information about the chances of disease remission or progres-

sion, and the possible benefits and discomforts of different treatment options. Most

importantly, they want to be active partners with clinicians in making the decisions

about the type and place of care.”

+ “The use of hospice care varied markedly across regions and hospitals. In at

least 50 academic medical centers, less than half of patients with poor progno-

sis cancer received hospice services.”

+ “In some hospitals, referral to hospice care occurred so close to the day of death that it was unlikely to have provided much assistance and comfort to patients.”

To see the full report: http://www.dartmouthatlas.org/downloads/reports/Cancer_report_11_16_10.pdf

"FACING DEATH" WITHOUT NURSES

In a conference room at Harvard Medical School, a gathering of doctors, lawyers, bioethicists, clergy, students and others considered how the care for a dying elderly man and his hospital-shopping wife might better have been handled. The conversation cried out for a soothing touch, and fittingly, it was a nurse who came through. The wife, in delusional denial and desperately clinging, had been singing to her comatose husband. A nurse asked what song the woman had been singing.

The laughter came as welcome relief in a room full of more caring hearts and minds than answers. But the nurse’s comment has stayed with me, and become less funny over time. It might have been the smartest question asked that day. But it was never answered, and the conversation moved on to a lawyer’s insights. So it is with the nurse’s voice.

I thought of this nurse as I watched the Frontline documentary “Facing Death,” which follows several end-of-life cases at Mount Sinai Medical Center in New York. The footage and interviews with doctors, patients and family are compelling, and unquestionably helpful in improving understanding of a quandary unique to our time -- accepting death when technology says you don’t have to. (“Facing Death” airs November 23 on PBS stations, but can be viewed online now at http://www.pbs.org/wgbh/pages/frontline/facing-death/)

Missing from the documentary is what should never be missing from this dialogue -- the nurse’s viewpoint. Nurses are the Waldo of “Facing Death.” Where are they? The documentary is full of poignant scenes of doctor-patient and doctor-family dialogue, always difficult and sometimes brutally honest, and shines a brilliant light on a problem that, if society doesn’t sort out, money will forceably and inequitably decide. This is the subject underlying the country’s “death panel” insanity, and kudos to Frontline for looking at it rationally and insightfully. Kudos, too, to the doctors and families who’ve put themselves on display in situations that couldn’t be more difficult. Allowing cameras at such a time took extraordinary courage, but is of such great value.

What “Facing Death” does well, it does exceedingly well. It makes the point that end-of-life medical practice today was science fiction twenty years ago, when letting go wasn’t really a choice, and that billions of dollars are spent on end-of-life care, which is not sustainable. While technology can prolong life, there are no promises about that life being improved. One doctor says nearly 95 percent of Mount Sinai’s medical ICU patients can’t communicate, a fate Atul Gawande has termed “warehoused oblivion.” Each case is uniquely challenging, and yet shares the harsh fact of a life ending. Only the number of days left is in question.

“Facing Death” is invaluable for any med student, for its view into when “doing no harm” gets particularly tricky. And yet, for all the poignant conversation and close-ups on care, nurses are mostly blurred motion and background noise. The one nurse quoted is the daughter of a dying woman at odds with her sister, who happens to be a doctor. The nurse/sister advocates for acceptance and compassionate care; the doctor/sister wants to do what’s required to maintain the parent’s pulse.

All is revealed through narrator, doctor or patient/family. No clergy is involved. No therapist. And no nurse.

In the Harvard case study, the wife demanded that something be done to keep her husband alive, and the doctors saw an irreversibly dying man. In the center of this quandary were the nurse and the patient, the latter unconscious and seemingly unaware, except when he was cleaned. This was necessary to avoid infection, and required removing dressing from raw, deteriorating flesh. His agony transcended his unconscious state. A nurse did the cleaning. Nurses have a high enough burnout rate without being asked to torture a dying man.

“Facing Death” adds to an important and timely conversation, but nurses should have been heard from. Because in care at the end of life, whether therapeutic or palliative, nurses are as front line as it gets.

THE TWITTER DIAGNOSIS

Awhile back, the Community Ethics Committee wrapped up a report on usage of social media by medical professionals. The way and speed at which social media is evolving, the subject is sure to make its way back into the CEC dialogue in some form.

Bryan Vartabedian, a pediatric gastroenterologist at Texas Children's Hospital/Baylor College of Medicine, blogs regularly about the convergence/collision of medicine and social media. Recently, a patient’s mother had a creative way to get his attention: She tweeted him. How he handled it is worth a read. http://33charts.com/2010/11/patients-contact-twitter.html

WHO IS THE PATIENT?

At a bioethics consortium November 5 at Harvard Medical School, I was a fly on the wall for a presentation and dialogue about the case of an elderly person near death and desperately hospital-shopped by a family member who couldn’t let go. Because of the necessarily private nature of the consortium, I won’t go into detail. But as is typical for me in hearing such stories from the perspectives of doctors, nurses, ethicists, lawyers and clergy, I left certain of less than when I arrived. I entered Countway Library thinking it would at least be clear who was the patient; I was wrong.

Care of the dying person was inextricably linked to care for a family member, whose emotional distress rendered rational, compassionate decisions, and consensus, impossible. For nurses, merely to clean the deteriorating skin was to physically torture the patient; to consider withholding treatment and allowing natural and humane dying was emotional torture for the spouse. So who was the patient?

It could be argued the spouse’s actions made grief harsher than if natural death had not been prolonged. The only unambiguous thought I came away with is that it is never ethical for a hospital to knowingly to give bad care to a patient. Maybe that should go without saying, but that wisp of clarity might be central to any legislation regarding medical futility: It is never OK for a doctor or hospital to give bad care. Professional integrity can’t survive that compromise.

THE BETANCOURT CASE

If ever a cause cried out for legislative wisdom and courage, it is medical futility. Consider the story of Ruben Betancourt, still playing out in New Jersey courts a year and a half after his death.

Ruben Betancourt died on May 29, 2009, at age 73, following complications from cancer surgery. In short, doctors at Trinitas Regional Medical Center in Elizabeth, N.J., deemed him in a persistent vegetative state, with a severe brain damage, kidneys beyond function, skin in irreversible deterioration. Betancourt's family disagreed and asked that treatment continue (tube-feed, dialysis, and a ventilator). Trinitas unilaterally imposed a do-not-resuscitate order, which put the family and hospital in court. And then Betancourt died.

At the heart of the Betancourt case is this: Is it ever OK for doctors to decide that dying is in process, medical care is futile, and to stop treatment against the stated wishes of the patient's family or guardian? And if the doctor can’t decide when treatment is pointless, who can? The questions will be ask more frequently as gap grows between society’s begrudging acceptance of death’s inevitability and medical science’s gift for prolonging life. And a further complication is cost: the hospital’s estimated tab for Betancourt’s care was $1.6 million.

Trinitas said it consulted with Betancourt's family and made efforts to transfer him elsewhere but could not find another facility willing to continue caring for him. "Patients do have a right to choose among available and appropriate treatment, but not to decide what's medically appropriate," Trinitas' vice president and general counsel Sam Germana told American Medical News.

Replied Betancourt attorney Todd Drayton: “We're not saying patients have the right to demand extraordinary or experimental treatment a hospital feels is inappropriate. That's not the issue. The facts of our case are whether or not a hospital can unilaterally terminate life-sustaining support over the objections of the family."

Last week, the New Jersey Appellate Division avoided “whole-cloth legislation from the bench,” but recognized the question won’t go away and requires “thoughtful consideration by the legislature.” The court’s apparent dodge may prove wise.

“Although at first glance it may appear that the Appellate Division side-stepped on an important issue with possibly nationwide consequences, the suggestion that the issue is best left for proper legislation may be the best course of action,” wrote Thaddeus Pope, bioethicist, blogger and law professor at Widener University. “The hospital sought an open-ended exception to the right-to-die doctrine for whenever a health care provider deems treatment to be unnecessary. While an exception that would allow some ability for a health care provider to refuse to continue treatment that is deemed unethical may be appropriate in certain circumstances, accepting such an argument might have led to an overbroad exception. The legislature may in general be better to craft a medical futility statute that would set the requirements for when a health care provider can refuse to continue providing treatment that would be considered futile.” (http://www.medicalfutility.blogspot.com/)

Before I began to participate in the work of the Community Ethics Committee in late 2008, I was essentially oblivious to this end-of-life conflict, when doctors who’ve been counted on to “do something” confront the likelihood that there is nothing therapeutic to be done to reverse the dying process. The term for this is the coldly descriptive “medical futility,” as the CEC learned through a study regarding the ethics of withholding non-therapeutic CPR.

Quoting from the CEC’s report: “We struggled to define what medical treatments patients and families are entitled to expect, and we gravitated toward an approach which took into account the patient’s overall goals of care which should be agreed upon after discussions with an informed patient and family. The goals of care then establish the entire context of a patient’s encounter with the medical community, so that a decision about CPR can be made within that context. We were faced with the fact that sometimes patients are dying -- a sacred process which should be protected.”

In trying to locate clarity amid death’s shape-shifting reality, the CEC perceived a need for sensitive, non-clinical language, and not putting off discussion of death until the patient is imminently terminal. Goals of care, which seem to have been lost in the Betancourt story, are crucial if this conflict is to ever achieve resolution.

The circumstances of Ruben Betancourt’s death are unique to him, but the inherent dilemma is agonizingly common for doctors and nurses alike. In such cases, hospitals can seem cold-hearted or must back down and provide care they don’t believe in, which carries untold consequences for the next patient. The public and the medical professional would be well served by legislation of clarity and vision.

CPR & PUBLIC PERCEPTION

Is it better to do something than nothing? Always?

The Boston Globe has published an exceptional piece on contemporary thinking about CPR by correspondent Karen Weintraub (see http://www.boston.com/yourtown/quincy/articles/2010/11/01/health_officials_say_paring_down_cpr_to_just_chest_compression_could_save_more_lives/).

In explaining giving new priority to chest compressions as the most effective method for non-medical personnel, the story clearly puts the practice of cardiopulmonary resuscitation into perspective. Weintraub underlines the important fact that while CPR can be a life-saving measure for individuals in cardiac arrest, it fails to revive the person more often than TV dramas would have you believe. The story also notes that the untrained bystander often must overcome squeamishness to perform CPR on a stranger, and that there’s less to overcome with chest compressions than with mouth-to-mouth.

And yet the story also perpetuates an assumption about the benefits of CPR that can have profound ramifications in the emergency room. A cardiac expert says of the American Heart Association’s new policy that “we hope that more people will at least do CPR, which will at least keep some blood flowing. It’s better to do something than nothing.”

Is it true that it’s better to do something than nothing? For the bystander suddenly confronted with a collapsed individual, it probably is true. But something significant is lost in the public’s understanding of CPR when its practice moves from the innocent bystander to the emergency room, where bones get broken, bodies get shocked, and medical personnel can be left to feel they’ve inflicted pointless violence on a dying individual -- for the benefit not of the patient, but of the family. Doctors and nurses can see irreversible dying in progress, rendering CPR of no therapeutic value. And yet, they are asked to “do something,” and though doing otherwise can seem heartless, acting against their own judgment about what’s best for the patient can have psychic consequences for medical personnel that carry over to the next patient.

Even if only one life in ten might be saved, it’s easy to support public education in the basics of CPR. But maybe, sometimes, doing something means withholding non-therapeutic CPR.