Imagining the Unimaginable

The terrorists who struck among crowds massed at the Boston Marathon finish line seemed intent on inflicting maximum harm, and the harm done was heartbreaking. But did the location of the explosions actually help to minimize fatalities?

The explosions occurred in close proximity to medical facilities and staff on hand for the runners, many of whom where themselves medical professionals, and response to those injured was immediate. Extraordinary medical care was just blocks away at Massachusetts General Hospital, Boston Medical Center, Tufts Medical Centerl, Beth Israel Deaconess Medical Center and Brigham and Women’s Hospital.

Two other factors were preparation and imagination. To a remarkable degree, Boston’s emergency physicians, surgeons, nurses and others were ready for the staggering demands of the tragedy. While such violence may seem unimaginable, imagining it was crucial to the response.

As reported by Bloomberg News, lessons learned since 9/11, and revisited annually in the years since, prepared Boston’s medical professionals and institutions for this tragedy. Boston isn’t alone in this; since 9/11, cities across the country have prepared as never before not only for acts of terrorism, but for other catastrophic events and pandemics.

The impetus for such preparation is easy to find. Just in the days since the Boston bombings, Canadian officials arrested two men allegedly plotting to derail a New York-Montreal train, Texans dealt with the deadly explosion at a fertilizer plant, and the Nature mapped outbreaks of the H7N9 avian flu in China.

According to the science journal, “One map supplied to Nature by the researchers shows, they note, that eastern China — the epicentre of the current H7N9 outbreaks — is one of the world's busiest hubs for airline traffic. A quarter of the global population outside of China lives within two hours of an airport with a direct flight from the outbreak regions, and 70% if a single connecting flight is included, the researchers explain.” 

As the Bloomberg story recounts, medical professionals train annually in disaster response: “The drills, now standard in most major U.S. cities, cover everything from plane crashes to natural disasters and dirty bombs, medical officials said. Each of the hospitals sends a team of 10 to 20 doctors and staff to the yearly drills ... The teams are then asked to respond to each scenario and the responses are discussed in depth by the entire group. ... This helps create the area-wide plans that kick in when an actual emergency occurs.”

Community Voices in Medical Ethics, which sponsors this blog, got a rare insight into this process of imagining disaster when we consulted with the Massachusetts Department of Public Health in imagining how to engage the public on what are known as Crisis Standards of Care. These are the standards put into practice during a catastrophe, natural or otherwise, that overwhelms available medical care, and so changes the rules of care we’ve come to expect.

In urgently caring for victims of the Marathon bombing, patients scheduled for surgery had to wait until those in more urgent need were operated on. So imagine the decision-making challenge for medical carers in the event of a tragedy of even greater proportions.

When there are not enough ventilators to go around, who gets one? When vaccines are in short supply during a pandemic, who goes to the head of the line? When there aren’t enough surgeons to meet the demand, or enough blood, who waits? Once first responders have been taken care of, who gets priority? How are fairness and ethics applied in such cases?

Some of the questions are just about impossible to answer, but to avoid them means not being ready the next time -- and unnecessarily adding the burdensome pressure of moral distress to an already beleaguered care team. And Bostonians have gotten a profound lesson in the benefits of imagination and preparedness.

According to Community Voices co-founder Carol Powers, one of the lessons of the Boston tragedy will be an emphasis on the emotional health of the care providers. She heard from a Brigham and Women's staff member about the emotional devastation for members of the care team determining which limbs could be reattached, and removing shrapnel and ball bearings from humans.

 “All the drills in the world don’t really get completely to the emotional toll,” she said. “The fact is that they shifted into gear and all procedures were laudatory and will be studied for a long time. But also studied will be the emotional fallout.”

The most compelling insight I’ve found into the emotional cost of care that day came from the blogger Nurse Bridgid.

“We have run disaster drill training extensively, city-wide, and hospital-wide, so we all know our roles,” she wrote, “but what I walked into, I could never have been prepared for.”

Hers is an astounding account of care expertly delivered amid unthinkable chaos, and when all the injured had been cared for, she left the hospital and stepped into a wild scene of federal and local police and tearful, anxious family members yearning for news.

“I was sobbing, and the FBI agent soothed me saying it was OK, this happens, and they will call me ... as I was walked out by one of the officers through the line of SWAT officers and sobbing family members of victims, all pleading me and begging me for information about their loved ones, telling me what they are wearing, and staring into the eyes of a young mother who asked if I remembered seeing her sons, and if they both still had their legs, I felt my whole body start to shut down. I couldn’t take it. I hadn’t cried, I hadn’t eaten or had anything to drink in hours, and I started shaking, as I got to the front of the Medical Center, I looked at the officer and said, I am going to vomit now, and he just put his hand on my back, turned away, I leaned over and vomited on the sidewalk. He told me I did a good thing today, and I walked to my car, called my mom to let her know I was OK, and cried my eyes out.”

#TakeTwo & Tweet Me in the Morning

Is social media just what the doctor ordered? That’s the impression left by writer David Shaywitz at forbes.com.

At a recent medical conference with a session on social media, Shaywitz found physicians were both convinced of the technology’s importance and loath to actually engage it.

Shaywitz categorizes physicians’ concerns as Patients Receiving “Bad” Information; Patients Transmitting “Bad” Information; Physicians Receiving Information Badly; and Physicians Transmitting Information Badly.

In one vignette, he captures the medical divide, often generational, around social media: “Rounding residents would routinely look at the cell phones rather than pay attention to either the patients or the senior doctors, leading at least one doctor to prohibit the use of mobile devices on rounds – except for a phone break he built into the schedule, to accommodate what he described as the young doctors’ obvious addiction.”

And yet, Shaywitz sees the technology as a boon to doctor-patient communication. “I see emerging modalities as offering the profession an urgently needed chance to radically update its approach, and interact with patients, data, and each other in important new ways.”

Read the full piece here.

And read the Community Ethics Committee’s report on social media to the Harvard Ethics Leadership Group here.

The Patient Role in a Failure to Communicate

“Investing in ACP is perhaps the single most important thing we can do as a society and as stewards of our health care system to improve the quality of care from the perspectives of patients and family members and to reduce health care costs at the (end of life).”

     From “Failure to Engage Hospitalized Elderly Patients and Their Families in Advance Care Planning,” JAMA Internal Medicine, April 1, 2013.

By PAUL C. McLEAN

Community Voices in Medical Ethics

In coverage of end-of-life care in mainstream, medical and social media, some points are repeated so often, they go without saying at this point. Examples: doctors make different choices than their patients about aggressive treatment; people say they wish to die at home but more often die in hospitals; that too much money is spent in the final months of life for little or no therapeutic benefit to the patient.

Here’s another: Change won’t occur without improved communication about how we die.

All go without saying but bear repeating. These and other points about planning for end-of-life care are repeating with particular frequency, especially on Twitter, in the days leading to National Healthcare Decisions Day, Tuesday, April 16. NHDD is an annual effort to educate and inspire both medical professionals and the people they serve in making a plan for care (follow @NHDD on Twitter or www.facebook.com/nationalhealthcaredecisionsday).

The need for such an effort is underscored in a story by Cole Petrochko, staff writer at MedPage Today, about the Canadian study in JAMA Internal Medicine (see the JAMA story and its related commentary). The study reports that many elderly patients discuss their end-of-life wishes and values with family and friends, which is good. And that many don’t communicate this information to their doctor, which isn’t good. But the surprise was in the Petrochko’s focus on patient responsibility.

Clearly, beginning with its headline, the Canadian study puts the onus for communication failure on the physicians and medical staff, which might be where it belongs. They do hold the power in this relationship. But Petrochko casts the findings in a light that’s refreshing and maybe even bold, writing:

“Most patients and their families who were planning for end-of-life care did not communicate plans with practitioners, and plans that were communicated were not being implemented.” 

This may be the medical version of Don’t Ask, Don’t Tell -- if physicians don’t ask, patients and families don’t tell. But this information might shape decisions over your own care, with your own wishes and values, so why wait to be asked?

Clearly expressing wishes is especially important for elderly who do not want aggressive therapies that are not beneficial. As the authors in JAMA report: "Aggressive treatment at the end of life has been shown to result in poorer quality of life for patients and family members, poorer quality of death, negative long-term consequences for the family, and wasted healthcare resources."

Physicians need better communication skills, and yet, what is the patient’s responsibility for ensuring his or her values are reflected in medical documentation?

The recent experience of two colleagues from Community Voices in Medical Ethics, which sponsors this blog, illustrates the importance of communication skills among medical professionals. Both had medical emergencies, and one thought to communicate with the surgical team that she did not want multiple resuscitation attempts. But they wanted neither to hear this, it seemed to my colleague, or to abide it. Fortunately, her care never reached that point of desperation.

The other colleague, newly arrived in rehab with multiple injuries, was queried awkwardly and insensitively about her own resuscitation preferences. The line of questions caught her very much by surprise.

Both colleagues are healing, and both returned to Community Voices work with searing new perspectives on the value of communication skills.

Even physicians who are excellent communicators are at the mercy of the patient or family’s ability or willingness to engage a difficult subject, so it was good to see MedPage Today shine some light on patient responsibility in this conversation.

A Community Voices colleague reminds me that it’s all well and good to create an advance directive, and to put it in writing, but three key players need to know about it: the patient, the family, and the physician.

The NHDD website has numerous resources for understanding why the advance-directive process is in everyone’s best interests. For both practitioners and patients ready to engage, excellent resources also are available at theconversationproject.org -- including “How to Talk to Your Doctor” 

Remembering Practices We'd Rather Forget

There is an effort under way, with significant support and compelling rationale, to address two sources of shame in American medical research by stripping a disgraced physician’s name from a significant award.

Inhumane, racist practices were carried out under the physician’s oversight. At Tuskegee, Alabama, African American men, believing they were receiving medical care for sexually transmitted diseases, were instead being studied for progression of the disease. This went on for forty years. In Guatemala, scientists went a step further -- actually infecting mental patients, prisoners and soldiers. Some of the practices were horrific, and thousands were affected.

Knowing this, it is chilling to think that an annual award for lifetime achievement in preventing and controlling sexual infections has for more than 40 years carried the doctor’s name, in honor of his work. The first award, in fact, was granted around the same time the Tuskegee experiments ended.

As remembered in the New York Times, Dr. Thomas Parran Jr. was a giant of western medicine who for more than a decade served as American’s sixth surgeon general and “used what was then a supremely powerful position to lift American public health to the front ranks.”

According to the writer, Dr. Lawrence K. Altman, Parran played major roles in getting Congress to finance rapid-treatment centers to control and prevent sexually transmitted diseases, defining the basic epidemiological principles of tracing sexual contacts of infected individuals so they could be treated, and requiring syphilis tests for marriage license applications. He championed the environment, truth in radio drug advertising and the World Health Organization.

All of which explains why an award was named for Parran. Meanwhile, the reasons the honor is so outrageous were kept secret for decades. The Guatemala experiments (1946-48) remained secret until research by Wellesley College professor Susan Reverby prompted investigation by U.S. health officials in 2010.

Altman explains:

"The two medical scandals revolved around experiments that are now universally regarded as shocking. Dr. Parran did not perform either study. Though national experts approved them both, he presided over them, strongly supported them and followed their progress in medical journals.

"One, the Tuskegee study, observed the course of untreated syphilis among hundreds of men who were infected naturally in Alabama. The study began in 1932, and it was not halted by the United States Public Health Service until 1972, after a whistle-blower complained that infected patients in the study were not given penicillin, the standard therapy after World War II. Some participants died of the disease, some of their sexual partners contracted it, and some children were born infected.

"In the other study, even more odious, American researchers from 1946 to 1948 intentionally exposed more than 1,300 Guatemalans, including many in mental institutions, to syphilis, gonorrhea and chancroid. Although Dr. Parran had said that consent was needed before individuals participated in experiments, no evidence exists that the American researchers sought such permission. Dr. Parran told a contemporary that the Guatemalan experiments could not have been conducted in the United States."

I’m no medical historian, and my knowledge of medical ethics is largely self-taught and goes back only a few years. And yet, I’ve devoted a significant amount of time to volunteer work with a group of citizens in the Boston area who are passionate about both the practitioners and beneficiaries of medical science, and about considering the standards medical professionals are held to, and hold themselves to. And chief among my lessons learned is that many in the medical profession and the public they serve have pitifully and dangerously short memories.

And so the lessons of Dr. Parran should be remembered, not erased.

Altman writes:

"Paul A. Lombardo of the Georgia State University College of Law, who advised the presidential commission that studied the Guatemala affair, offers a less drastic measure: rewriting the citation to include 'an account of Dr. Parran’s involvement in two of the most disgraceful episodes in the annals of research ethics.' 

"Such a step would remind future generations that even scientists’ most glittering successes are no guarantee against ethical malfeasance. 'Myth would be balanced with a touch of reality,' Professor Lombardo wrote."

Parran got his medical degree from Georgetown University in 1915, a time of remarkable transformation in medicine. Medical schools were only beginning to demand high academic and training standards among faculty and students (the field of medical ethics was still decades away). Eugenic sterilization was being performed in some American hospitals -- inspiring Nazi practices a short time later. At the time, endowments for medical schools were miniscule, a fraction of those for seminaries, which had long attracted the best and brightest.

The Community Ethics Committee, sponsor of this blog, studied the Guatemala human experiments for a report submitted to the presidential commission. “More than any other topic the Committee has addressed to date,” we wrote, “the issues raised by clinical trials in resource-poor countries, especially as illustrated by the graphic and troubling abuses of the 1940s Guatemalan study, brought out the differences of our cultural sensibilities and the resultant trust and distrust of institutional medical systems.”

The Committee’s study is titled Advocacy for Research Participants. Our primary recommendation was that “empowered, informed and truly independent Participant Advocates be assigned to research participants and that those advocates stay with individual participants from the initiation of the informed consent process, through the clinical trial, and for follow-up after the trial closes.”

Additionally, we wrote, “given the pervasive nature of clinical trials in current medical practice, we highly recommend that medical schools require a Course in Medical and Research Ethics and clinical trial protocols.”

The study is available here.

Especially among vulnerable and marginalized communities, trust in the medical profession is fragile, and Tuskegee and Guatemala are part of the reason. Trust won’t improve without memory of the roots of the distrust.

So the life and work of Thomas Parran Jr. is worth remembering, annually, in all its ambiguity. 

Guidelines for Treating the "Whole" Person

An insight into why the palliative care speciality has earned its reputation for understanding and treating the “whole” patient is provided by new clinical practice guidelines from the National Consensus Project for Quality Palliative Care.

The guidelines, which identify eight areas of care and describe elements of best practice, focus of these specific areas of care: structure and processes, physical aspects, psychological and psychiatric aspects, social aspects, spiritual/religious/existential aspects, cultural aspects, care of the patient at the end of life, and ethical and legal aspects.

Also noteworthy: The third edition of Clinical Practice Guidelines for Quality Palliative Care, available by download here, emphasizes the need to deliver palliative care from the time of diagnosis, through an interdisciplinary team.