A Supreme Ruling on the Subject of Playing God

Three years ago, doctors in Ontario, Canada, argued that life-sustaining technologies and therapies were no longer in the best interests of a patient who had sustained serious brain damage during surgery.

Last December, in court, an attorney for the patient’s family disagreed: “The treatment is 100 per cent effective. It permits him to breathe.”

In the case of Hassan Rasouli, still alive in Ontario critical care, that seems to have been a winning argument with the Supreme Court of Canada, which is where the dispute wound up.

It is unsettling to write about a human being, a stranger in a strange land, and wonder whether he ought still to be alive. It's the sort of consideration I'd like to entrust to a professional. Which is, of course, the problem.

Doctors, the professionals who might best know, aren't to be trusted or empowered with this decision, according to the Supreme Court of Canada. That might be the right decision. But intensive care units already are notorious for doctor and nurse burnout; this doesn’t help.

This much is indisputable: Hassan Rasouli is alive three years after his physicians said life-sustaining treatment should cease. Rasouli, thought to be in a vegetative state following complications from surgery on his brain, could not speak to his own wishes. But his wife, a physician herself in her native Iran, disagreed with the physicians and sued to maintain his life-sustaining care.

This past week, the Supreme Court of Canada ruled in her favor. They said removing life support requires consent by the patient or substitute decision maker.

That Rasouli is alive is not to say he is expected to recover to anything near his life before the surgery, although he is considered now minimally conscious. But is he sentient?

Though this drama is playing out in Canada, it has an interested following in the United States, some of whom will attend a conference in Atlanta this week of the American Society for Bioethics and Humanities. As timing would have it, the conference is devoted to the issue of futile care in medicine, especially in those cases when the physicians and families cannot agree on what should be done. Members of Community Voices in Medical Ethics will attend to present from their report on the subject.

American media has taken little notice of the story, but in Canada, where assisted dying continues to be debated legally and politically in British Columbia and Quebec, there has been insightful reporting and commentary done on both sides of the Rasouli ruling. (See here, here, here and here). Some commenters online call this a rather minor ruling, but I don't believe that. Quite the opposite. Disputes over medical futility are relatively rare, but even more rare are the ones that make it to trial. The patients typically don't live long enough, and suits are dropped. Legislatures avoid the subject. So this ruling will be studied closely.

For me, these are points of interest:

The Patient

Hassan Rasouli, a Shia Muslim who emigrated in 2010 with his wife and two children from Iran to Canada, was left in a vegetative state three years ago from complications of surgery on a brain tumor. He has been hospitalized on life support (ventilator, feeding tubes, blood pressure drugs) ever since, but more recently was rediagnosed as minimally conscious.

What Do I Like About the Ruling?

I am happy for the wife and adult children, who fought long and hard for Rasouli. Doctors have long thought that therapeutic treatment served no beneficial purpose to Rasouli. But the family thought otherwise, and fought to keep him on life support. The court told doctors they could not remove the life support without the wife's consent. “My father’s life has changed, but he’s there," Rasouli's daughter told the National Post. "He’s human like any other human.”

Leaving this decision in the hospital’s hands could stoke “slippery slope” fears and compromise the foundational trust relationship between doctors and patients.

And the doctors in the dispute may have overreached. Ontario has a very good system for dispute resolution, the Consent and Capacity Board, and this decision may convince doctors in similar situations to make use of it.

Why Does Religion Even Matter?

In terms of his treatment as a patient, it shouldn't. But religious belief has been cited by the family as reason for keeping him on life support. And religion often is cited in cases of dispute over medical care of the dying. In Manitoba, before a dispute over the life-sustaining care of Samuel Golubchuk could be resolved in court, Golubchuk died. But before that happened, three critical care physicians from a staff of six resigned rather than continue treatments they described as torture. Golubchuk’s adult children argued that discontinuing life support would go against the strongly held beliefs of their Orthodox Jewish father. 

If Such Cases Are Rare, Then Who Cares?

An intensivist at Massachusetts General Hospital estimated that disputes over end-of-life care have become perhaps a monthly ordeal on an urban critical care ward. But if you're the doctor or nurse repeatedly changing dressing, vacuuming the throat or otherwise doing procedures for no apparent benefit to the patient, then it matters a great deal. Life support arguably becomes a vehicle for prolonging abuse.

Another reason to care is the third rail of any conversation about medical care: Cost. Recently, the Republican candidate for US Senate from New Jersey said if someone else gets cancer and lacks health insurance, "that's not my problem." He was defeated, but a lot of people voted for him. It's been estimated that maintenance of one patient in an ICU for a year costs $1 million. Canadian taxpayers will pay a high tab for Rasouli’s care.

Who Is Hurt By Keeping the Man Alive?

Anyone who is morally or ethically compromised by ordering or delivering the man's daily care, the doctors and nurses especially. If the medical team believes it is providing care in the patient's best interests, then treatment that causes some pain or prolongs suffering can be justified. Lacking a belief that you are serving the patient's best interests, it is simply bad care. And the decision makers who survive such patients often experience grief compounded by profound regret. 

What’s Disappointing in the Ruling?

Although the ruling is a rare firm decision on decision-making in end-of-life medical care, it does not address underlying problems that cause such disputes to become intractable. Physicians and nurses will continue to be forced to provide care that goes against their ethical or moral principles, which can only increase burnout in an already stressful field. Long-term life-sustaining is not what ICUs are intended for, and some fear the ruling might lead to changes in admission standards for critical care patients.

A US Export: End-of-Life Guidelines

Name the American physician-author whose checklist has been adopted in the United Kingdom for end-of-life medical care.

Did you guess Atul Gawande? The Brigham & Women’s surgeon and author (“The Checklist Manifesto,” etc.) would have been my guess, especially as he’s collaborating on that subject with palliative specialist Dr. Susan Block, also of the Brigham.

But the correct answer is Monica Williams-Murphy. If that’s a surprise, it should be a pleasant surprise.

Indeed, it’s good to see that Williams-Murphy’s work is gaining recognition and influence.

Williams-Murphy co-authored the book “It’s OK to Die” (see review) and blogs at oktodie.com. That is, when she’s not practicing emergency medicine in Huntsville, Alabama.

The essays and guidelines in both the book and blog are significant contributions to the literature of medical care at the end of life. Hers is an especially important voice for two reasons.

One, she’s an emergency physician, and for better or worse, the emergency room is where the poor and uninsured go for their care. Also, ER physicians regularly have the thankless task of diagnosing and treating urgent health problems with little or no knowledge of the patient or the patient’s values.

Perhaps more important, at least politically, is that Williams-Murphy is not from Massachusetts or another so-called Blue State. She practices in Alabama, politically as Red as a state can get. 

I’ve got nothing against Boston doctors. They’re among the best anywhere, and some of them saved my daughter’s life. I consider it a privilege of living in Brookline, Massachusetts that I’m in walking distance of Children’s Hospital Boston and several world-class centers of care and healing.

But there’s no denying that Harvard Medical carries elitist baggage with some of the American public. And maybe this exposes a bias on my part, but an elitist tag is not a problem for an emergency physician in Huntsville, Alabama. Geography gives Williams-Murphy credibility. That she has something important to say helps, too.

So I considered her place of practice notable when I first read “It’s OK to Die.” And I was glad to read this week that Norfolk & Suffolk Palliative Care Academy in the United Kingdom has adapted her guidelines in creating its online resource at bereadyforit.org.uk.

“Be ready for it will help you to talk openly about dying and plan ahead so that you can make the right choices about end of life care,” the website says.

Another positive in this: The launch of bereadyforit.org.uk follows by only a couple of months the demise of the Liverpool Care Pathway for the Dying Patient. That effective, hospice-inspired framework for end-of-life care in the United Kingdom was hurriedly implemented and poorly communicated in some locations and was blamed for patient neglect that led to early deaths. It is now being phased out, and dismissed by some as “tick-box medicine.” 

The solution to disputes over care is in more dialogue, not less, among families, communities, and doctors and patients. In this, a well-considered checklist can be helpful.

In her book, Williams-Murphy agrees with the American Medical Association “that there is no good reason to either allow or cause unnecessary suffering at the end of life. Sadly, we have arrived at a place in American history where this unnecessary suffering is too frequently occurring.”

The collaboration between bereadyforit.org.uk and Dr. Williams-Murphy is a welcome sign that the checklist isn’t going away.

A Bioethical Shutdown

I visited Bioethics.gov today hoping to read new educational materials from the Presidential Commission for the Study of Bioethical Issues. The new resources are based “on real-life ethical challenges addressed by the Bioethics Commission, including its investigation into the 1940s U.S. Public Health Service STD research in Guatemala, and how to advance whole genome sequencing while protecting individuals' privacy.”

The Guatemala study is of particular interest to Community Voices in Medical Ethics, following our own study calling for stronger advocacy for research participants -- and to stop calling those participants “subjects.”

Alas, catching up on the Presidential Commission’s new materials will have to wait. My education was limited to this reminder of the government shutdown:

“Due to the lapse in government funding, Bioethics.gov is unavailable during the government shutdown. The Presidential Commission for the Study of Bioethical Issues is not able to respond to inquiries until appropriations are enacted. Updates regarding government operating status and resumption of normal operations can be found at usa.gov.  We regret any inconvenience.”

A Walk on the Transplant Side

The liver newly implanted in Lou Reed is not thrilled with its 71-year-old host, The Onion reports. The rock ‘n’ roll icon “is really hard to get along with,” the 3.5-pound organ is quoted as saying.

You know these are roiling times in the world of organ transplantation when even The Onion is devoting its satire to the subject. And though The Onion did not actually interview the newly relocated organ, the simple fact of the singer known for “Walk on the Wild Side” receiving a replacement liver is true.

Also true is a confluence of news stories that highlight both extraordinary, life-extending advances in organ transplantation and the inequity and heart-break created by those very advances, because the scarcity of organs, especially hearts and lungs, means a select few will benefit. The supply is not meeting the demand.

Just in the past week, while ethicists and pundits alike pondered the appropriateness of awarding a new liver to Reed, whose admitted excesses contributed to the failure of the original, a 31-year-old man surprised his surgeons with how robust he appeared at a press conference in Utah, only weeks after he received both a new heart and new liver in a single surgery. Read the story here. 

His was a joyous occasion, far different from the mood at Children’s Hospital of Philadelphia, where a 10-year-old girl with lungs ravaged by cystic fibrosis desperately needs a transplant but no organ is available. That is, no organ is available to those atop the children’s list, where donor organs are even more rare by comparison with those for the teen-adult list.

Physicians, surgeons and other transplant authorities have deemed issues of organ size and surgical risk sufficient to place children on a separate list. Those reasons are being questioned heatedly and understandably by the parents, and a online signature drive rallying support for the child’s transplant has generated more than 300,000 signatures.

On Wednesday, lawyers for the girl’s family won a temporary court order making her eligible to seek an organ from an adult donor. One day later, the same judge made a similar ruling for another child seeking access to the adult transplant list. 

I look forward to better understanding the reasoning behind creating separate waiting lists by age. I've read both that a modified adult lung hold great promise for a child, and that modifying the lung adds seriously to the surgical complexity of the transplant. Is the transplant success rate sufficiently diminished for a child receiving a modified adult lung to negate the potential benefit in years of life? Is a satisfactory answer to that question even possible? 

Who sets these policies? Transplant physicians, government officials, specialists in immunology, experts in organ donation, donor families, transplant recipients and members of the general public.

And yet U.S. Rep. Patrick Meehan from Pennsylvania, part of the drive to get the child new lungs, referred to “the arbitrary policy” keeping her off the teen-adult list. The policy may well be wrong, in this case, but it is not arbitrary. The policy also has been widely described as “federal,” but it was determined by transplant surgeons and families, among others. And who is better placed to make such policy? Certainly not an online signatory at change.org, or a politician or bureaucrat.

There are a number of useful online resources for understanding the thinking behind transplant policies, including here, here and here.

Interestingly, the United Network for Organ Sharing, which holds the federal contract and operates the organ-sharing system known as the Organ Procurement and Transplant Network, notes in an FAQ on lung transplant: “As transplant professionals apply this system and learn from it, some changes will likely be required to better meet the needs of transplant candidates. In fact, this system is designed to be flexible and allow for improvements.”

In Utah, transplant surgeons, working consecutively, placed new lungs and heart in a 31-year-old man who surprised them less than two months later with his impressive physical presence. Amazing -- even miraculous, if you’re given to such a word choice. He’d been on the waiting list for 718 days.

Those transplant teams, or their colleagues elsewhere, are the experts behind these newly controversial allocation policies. They're the ones who would modify an adult organ to fit a 10-year-old.

As the heart surgeon said: "We have a young man sitting here who has the gift of two organs from a family that was kind enough to give the gift of life. And he looks terrific. If you pass him on the street you won’t know he had a transplant."

According to UNOS, nearly 120,000 people are on the national transplant waiting list. About 92 get transplants daily, while 18 die. About 1,700 are on the list for new lungs. If the 10-year-old gets an adult lung, someone else won’t. Probably someone lacking an online signature drive.

As Lou Reed’s new liver “told” The Onion: “He just has this way of making you feel completely inadequate.”

Lungs, the List and the 10-year-old

I don’t know much about organ transplantation, though I’m learning during a current study with colleagues on the Community Ethics Committee of selection criteria for pediatric transplant recipients. 

Before this study began, much of what I knew was learned one morning several years ago at Seattle Children’s Hospital. I was angry and getting angrier at the unfairness of my 8-year-old daughter having to wait for surgery to implant the tubes that would deliver chemo, other drugs, blood and eventually the stem cells that would save her life. My daughter was anxious and hungry, and I was angry at the delay. 

But something more pressing had come up for the surgeon. Something more important than my daughter and her merely life-threatening illness.

Turned out, a heart had become available, and was delivered by helicopter in the middle of the night. One child’s death gave another child another chance, and got us bumped from first on the surgeon’s morning list. It wasn’t fair, but nothing is fair in organ transplant, where you only get to the top of the list if you’re about to die, and then there may not even be an organ available when you need it. And God forbid something else goes wrong with your body, because that can get you dropped from the list or never placed on it in the first place.

Another insight into fairness and transplant came via friends in Los Angeles, whose only child I had watched grow up before moving east. I visited them at the hospital when she was born, before the cystic fibrosis diagnosis. We lost contact. Then, when I heard from them again, it was to inform me that their daughter had died. She’d made it to high school graduation, but not much longer. She was on the waiting list for a lung transplant when she died. Cystic fibrosis hadn’t left her alone for a moment for 18 years. Her parents put everything they had into that child, but only new lungs could save her, and they weren’t available.

I think about them in reading about the change.org signature drive to get the system run under contract with Department of Health and Human Services by the United Network for Organ Sharing to change the policy that separates children from teens/adults. Adult lungs are less suitable for children, must be modified, and success rates decrease. 

Missing from the signature drive, in support of the anguished parents and their desperately needy 10-year-old, is the fact of just how scarce lungs are. The need is much greater than the supply. 

If this current signature drive succeeds, and this precious 10-year-old manages to get on the adult list and then to receive new lungs, someone else will not get those lungs. And that person, or someone else down the list, will die. Probably without a signature drive.

That doesn’t seem fair, but it could arguably be considered just, and the media coverage might inspire increased donations.

Much of the online dialogue about this case offers more heat than light, but one idea stood out among comments at CNN.com: “In countries where they changed organ donation from an opt-in system to an opt-out system (that is, you were assumed to be an organ donor unless you explicitly requested otherwise), organ donation increased immensely.”

See coverage of the 10-year-old’s plight here, here and here.

Hope Comes in Three Flavors

A study from The Netherlands looks at hope as experienced by palliative-care patients -- through the literature of medical professionals.

The perspectives fall into three categories: realistic (“hope as an expectation should be truthful, and healthcare professionals focused on adjusting hope to truth”), functional (“hope as coping mechanism should help patients, and professionals focused on fostering hope”), and narrative (“hope as meaning should be valuable for patients, and healthcare professionals focused on interpreting it”).

The study concludes, “Healthcare professionals who are able to work with three perspectives on hope may improve their communication with their palliative care patients, which leads to a better quality of care.”

Hastings Updates Guidelines on End-of-Life Decision-Making

Hastings Center has updated a resource to help medical professionals, patients and families with conversations and other aspects of decision-making in end-of-life care.

“The book is designed for practical use in hospitals, nursing homes, community health settings, or anywhere that professionals, patients, and loved ones need to discuss a patient’s values and preferences concerning different options for treatment and care,” says Nancy Berlinger, Hastings Center research scholar and co-author of the guidelines with Bruce Jennings, director of bioethics at the Center for Humans and Nature, and Susan M. Wolf, professor of law, medicine & public policy at the University of Minnesota.

“The guidelines offer a reliable framework for these discussions, and for education, policy-making, and redesign of care. They also encourage health care leaders and administrators to support better outcomes for patients by building more effective forms of care delivery and integrating care near the end of life into organizational safety and improvement initiatives.”

See more on the guidelines here.

And Hastings Center president Mildred Solomon’s description here. 

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.