恶人谷

没想到 JAMA (The Journal of American Medical Association) 有这样一个专栏，昨晚看的是这篇 Hope Is the Thing With Feathers，写如何与处於终末期的癌症病人讨论治疗方案，写得真好，希望越来越多的医生能够在这方面更好地帮助病人和家属接受死亡。

Hope Is the Thing With Feathers
[A Piece of My Mind]
Cripe, Larry D. MD

Section Editor(s): Young, Roxanne K.

Associate Editor.
Indianapolis, Indiana, lcripe@iupui.edu
I DISCOVERED THE DEAD CARDINAL SEVERAL WEEKS AFTER Mr Jackson * died of acute leukemia in the medical intensive care unit, his thin frame bloated and bruised and his face distorted by the tape that held the tubes in place. It is my morning routine to inspect my gardens while retrieving the newspaper. Most days―depending on the season―my first thoughts involve plans to plant, weed, or cut back the gardens, unless I am preoccupied with thoughts of overbooked clinics, past-due manuscripts, clinical research protocols, or the difficult conversations necessary to guide patients with leukemia through a disease for which treatment is frequently ineffective.

It was a cool summer morning; an undulating layer of mist swirled about the garden. The purple and yellow coneflowers―bobbing with the breeze in and out of the slivers of the morning's first light―were like the brightly colored woolen hats of children playing in a fine wind-blown snow. Suddenly, a long bright red tail feather tottering on a branch caught my attention. Looking around I discovered more feathers scattered on the thick wet grass and then the remains of a large male cardinal under the evergreens at the corner of my house.

Eleven days before Mr Jackson died, I had sat on the corner of his hospital bed. He was propped up with three overstuffed silk pillows from home; after five weeks, he was anxious to leave the hospital. Unfortunately, there were no signs of benefit from the latest treatment he had received for recurrent acute leukemia. He still required daily transfusions. His fevers persisted despite antibiotics; he had no normal white cells. A partial bowel obstruction had recurred and he vomited the scant amount of food he swallowed. His pale and iridescent skin was drawn taut about his face and hands.

“I will eat better at home. And once I have gained weight we can try something else,” he said, eyes closed, his words barely audible above the bubbling oxygen canister on the wall. My gaze moved from can to untouched can of dietary supplements throughout the room. “I agree it's time to go home,” I finally replied, glancing at his wife who sat near the window, “but I believe we should plan to care for you as your life ends.”

“You believe there's no hope, that it is hopeless then?” Mr Jackson asked, his hand moving dismissively as he looked away.

I did not answer his question. Instead I retreated to a discussion of more practical―less threatening―matters, such as the frequency of outpatient transfusions, without further mention of advance directives, end-of-life care, or hospice. Within a week or so he became unresponsive while receiving a transfusion in the outpatient clinic, and the critical care team resuscitated him. He died a few days later. As I walked from the room, his older daughter's sobs―intermittent and rasping like Mr Jackson's final few gasps after I withdrew the endotracheal tube―became indistinct. Later I would read in a letter she wrote, “I wanted to scream, What have you done to my father? He was such a lovely man. He did not deserve to die like this.”

The day before he had been admitted to the hospital to receive chemotherapy, Mr Jackson, his family, and I met together in my office to discuss his care. The leukemia had recurred, after a brief second remission, while he was recovering from surgery for a bowel obstruction. I did not believe a third remission was possible. As I spoke, I printed, on a piece of paper, a list of options and the goals, risks, and likely outcome of each option. I emphasized the difference in terms of the need for hospitalization or transfusion and the possible risk of death during treatment. “I think we should avoid the risks of further chemotherapy. We can support you for a while at home with transfusions and eventually care for you and your family as your life ends,” I said. He listened attentively, his long thin fingers repeatedly smoothing the redundant folds of his pressed cotton madras shirt and khaki trousers to hide how thin he had become.

“My aunt died last week,” he replied. He had sat next to the aisle during the funeral, the corner of her casket at his shoulder. He had cried openly. “People thought I was crying for her, but I wasn't. I was crying for myself. It seemed so hopeless.” And then he spoke of his dread of what I would say at this appointment. He began to remain in his pajamas until late afternoon, he stopped trying to eat, and he was short with his grandchildren. “But there is hope,” he said, pointing to an option for treatment printed on the piece of paper between us. Seven weeks later he was dead.

That summer morning as I gathered the scattered feathers, thinking about Mr Jackson's question, his prolonged and futile hospitalization, the way in which he died, and his daughter's anguish, I recalled the first stanza of a poem by Emily Dickinson:


Hope is the thing with feathers That perches in the soul, And sings the tune without the words, And never stops at all.

The capacity to hope―hopefulness―is a fundamental human perspective that allows a person to imagine the future as possible and, to some extent, desirable. Hope is an enduring source of fortitude, courage, and, on some level, ingenuity in the face of adversity. The source of hope is one of life's greatest mysteries. But, it occurred to me, hope is often transformed into something seemingly more tangible, like a cardinal, as we share our experiences, beliefs, aspirations, and desires with one another. In a sense, hope becomes that which allows us to hope.

And, in the contemporary cancer experience, hope has become the successful treatment of cancer. It is commonplace to hear stories of the unexpected recovery despite the judgment of physicians that death was imminent. We frequently speak of the person who insisted his doctors do something, anything, and years later is alive and well. The word hope becomes synonymous with actions or positive outcomes in pharmaceutical advertisements, marketing plans for cancer practices, patient advocacy publications, and press releases from medical meetings. Oncologists not infrequently confuse―a more accurate though less charitable verb than “justify”―the decision to administer therapy in instances of little likely benefit with the act of providing or preserving hope.

In doing so, physicians frequently make the transition to end-of-life care more difficult―perhaps even hopeless―by emphasizing that hope is something tangible, such as a test, a treatment, or the promise of medical research. The patients I care for will often assure me―as Mr Jackson repeatedly did―that they are not quitters; that they are willing to do something, anything; that doing nothing is not an option. Sadly, regardless of their willingness to receive treatment, the vast majority of adults with acute leukemia―and many other advanced cancers―will die of the disease. Do they not deserve the opportunity to receive care attentive to their unique needs as life ends?

As I prepared to bury the cardinal, struck by its simultaneous fragility and resiliency, I began to realize that hope, as a thing―a decision or an action―is fragile; while hopefulness―the enduring capacity to hope, to live with meaning even if recovery is not possible―is resilient. And with a sense of exhilaration, I could effortlessly imagine the cardinal soaring from tree to tree, a bright and triumphant speck high against the sky like the point of an etching tool inscribing an intricate pattern in a crystal bowl. Perhaps, I thought, the way in which I speak of hope―the stories I choose to share―can influence whether a person with a terminal illness approaches the end of his or her life with a sense of hopelessness or hopefulness.

In the years since Mr Jackson died, I have struggled to maintain hopefulness during the transition from the use of aggressive chemotherapy to end-of-life care. I have learned to discuss the possibility of end-of-life care positively during my initial conversations with a patient so, as the goals of my care change, my recommendation for end-of-life care is not perceived as giving up, but rather as remaining committed on a very personal level.

But I am not naïve. My colleagues and I were trained―and many of us continue to train future physicians―to scour our collective experience for any drug, any test, or any procedure that might delay death. The possibility of recovery―however remote―will always exert tremendous influence on a person's decision to receive further aggressive therapy. But I have witnessed the peace, the comfort, the joy, and the sense of completion when a person chooses to live unencumbered by the demands of modern medical therapy. Even so, I have to deliberately and frequently remind myself that a willingness to prescribe chemotherapy in order to preserve hope, when meaningful prolongation of life is not likely, may in fact contribute to a sense of hopelessness as life ends.

Mr Jackson and I had met for the first time when his young daughter scheduled an appointment for a second opinion with me because she had read on the Internet that I was the lead investigator of a national trial for acute leukemia in older adults. He elected to receive treatment on the trial, “because,” he said, “there's more hope for me in the trial.” At that time, I did not pay particular attention to his comment. But Mr Jackson's sense of hope remained dependent on receiving chemotherapy. When the leukemia recurred I recommended end-of-life care based on my sense that further chemotherapy was futile. I did not offer a positive alternative. Today I would share with him, as I now do with others, my belief that true hope is present within him, safely perched in his soul, independent of the treatment he receives. I speak more openly and candidly about the resiliency of people who I observe. By sharing the stories of people who have managed to live fully―conserving and cherishing the time that remains focused on family and friends―to the final moments, I honor the resiliency of the human spirit, of the capacity to hope. And I make a promise to care for each person with compassion and diligence throughout the illness―to do something, anything―to preserve the opportunity for recovery or to live fully as life ends.

On occasion I imagine myself back in Mr Jackson's hospital room with another opportunity to respond to his question. “I do not believe it is hopeless,” I say. Most of the time, he still turns away disappointed. Every once in a while, though, he replies, as he takes his wife's hand, “Neither do we. Neither do we.”

Larry D. Cripe, MD

Indianapolis, Indiana, lcripe@iupui.edu

*Mr Jackson is a fictitious name. [Context Link]

A PIECE OF MY MIND (Young RK, ed)

Another one

The Spirit of Writing
[A Piece of My Mind]
Rambach, Peggy MA, MFA

Section Editor(s): Young, Roxanne K.

Associate Editor.
Andover, Massachusetts, prambach@aol.com
IT IS THE FIRST WRITING WORKSHOP I AM TEACHING AT THE state hospital, and when I say we'll start by writing a poem, Jill, a woman whose skin is soft and pallid from living much of her life indoors, says she can't write poems. So does Addie, a woman so tiny her chin just clears the tabletop. And Martha, who is wearing what looks like hospital scrubs, says she can't write at all.

These are three of my DMH students, resident patients under the jurisdiction of my state's Department of Mental Health. Some of them are allowed off their unit only to attend my class. Some are allowed off only if they are individually supervised.

They sit at a long table in an otherwise empty recreational room. The floor is polished beige linoleum, and it ends at a wall of windows. There's another woman there too, Miranda, tall, big-boned, dark-haired, powerful-looking despite her illness and the meds she takes that make her hands shake. She's also nervous, and restless, but more eager than fearful, and she is quick to encourage the other three. “You can do it. You'll be fine,” she says. Otherwise, no one smiles, and all but Miranda look straight down at the table.

“Don't worry,” I say. “Everyone is always a little afraid to start.” But what I'm seeing here is more like white-knuckle terror, and I wonder if teaching writing to patients in long-term care is as therapeutic and enriching as I've written again and again in the kind of grants that fund these classes―what I've written along with my partners, the Massachusetts Cultural Council and the Vermont Arts Exchange.

I'm not alone in this. No one could be alone to establish an artist residency in a place like this hospital, or the Vermont Veterans' Home, or Union Hospital in Lynn, Massachusetts, where I may soon be teaching memoir-writing to a support group for patients with cancer. There are the logistics to work out; the scheduling, coordination, and communication among departments, so that my students aren't boarding a van to the movies or are not scheduled for an appointment with the ophthalmologist at the same time as my class.

There's also staff availability to consider. Support staff needs to be present to scribe for patients who can't write, to tell me if I should or shouldn't encourage a patient to explore emotionally difficult material, or simply to make copies or find some pens that roll faster on a page. But all that comes after the hardest work of all, which is to convince the health care professionals and potential funders that the opportunity for patients in long-term care to express themselves in the arts will make their lives better, will make them better, will help them heal.

Kevin is a member of the second session I am teaching. He is a big man, tall, broad-shouldered, and handsome and would be a little intimidating if he weren't sitting at a table and, like most of the others in the room, looking straight at it. Because he is considered to be at high risk for suicide, this is the first time since his admittance weeks ago that he has been allowed off his unit, something, he later says, is like breathing fresh air; it is a privilege that Victoria has fought for.

Victoria, hair in a braid to her waist and usually wearing a flowing purple print, is a relentless advocate for all the mental health patients here, someone whose no-nonsense, all-business exterior belies, at first, the steadfast loyalty, the commitment and compassion she shows her patients. She has told me that the writing class was the only activity Kevin wanted to join, although he along with the others, six in all, are beginning this class with the same fear and uncertainty as had Jill, Addie, and Martha. But now I know that despite an inauspicious start, all three had by the class' end each written a poem. Martha, smiling when I read hers back to her, had said, “I did that?” And Miranda, who it turned out was a gifted poet, wrote four.

By the end of this class, Kevin has written one too, and so has Jeannie, a woman who sits in a wheelchair and has been diagnosed with a form of psychosis and spends most of the other days of the week undergoing dialysis. She vows at the start of class that she never has and never could write a poem, and yet I learn later from Victoria that Jeannie, like Kevin, had been indifferent to all other activities but this one.

Jeannie writes two poems, startling in the sophistication of their structure and without a hint of the rhyme first-time poets think is mandatory. She continues to complete a draft of a poem in each subsequent class, professing, each time, to know nothing about what she's doing. “Is this a poem?” she asks. “I don't know how to write a poem; but I'm just writing, and is this a poem?” And yet she questions every line, considers my suggestions, and revises with the cool objectivity of a pro. In fact, everyone revises.

Although I am sure to offer encouragement, I do not laud every word my students put on a page. I am a teacher and I teach. And what I teach is form, how to make words into an effective poem, a story, or an essay, for it is the discipline of form that leads to true insight, a real message that is just as much the writer's discovery as it is his or her audience's. And whether my students are fifth-graders, undergraduates, high school students, or 90-year-olds with dementia, whether they hear voices, are blind, are dying of kidney failure, are living with cancer, or have for all their lives lived in an institution, my methods and expectations remain the same. With few exceptions, no matter what life has dealt us, and what stage we're in, we have the capacity to create and the ability to learn. And if these things lie fallow, so do we.

Four weeks after our first class Kevin stands at a lectern before 30 people seated in the large “old lobby” of the hospital and reads a poem about overcoming despair and a memoir about playing in the snow with his wife. Jeannie refuses to read her own work, but, not to my surprise, at the last minute changes her mind, wheels up front, takes the handheld microphone, and reads her poems with a poise similar to Kevin's, similar to everyone's, in fact, like they've done this a million times.

And then it's Jerry's turn. He is not a mental health patient; rather, he is under the jurisdiction of the Department of Public Health and he has lived at this hospital for 30 years. He has come to every one of my DPH classes to hand me, each time, a complete and near-flawless section of a memoir about growing up in Yazoo City, Mississippi, during Jim Crow. He reads his story with the same quiet confidence with which he wrote it. And it is Jerry, later, who when asked on the evaluation form what it is that he has learned, writes simply, “I learned I could communicate.”

Peggy Rambach, MA, MFA

Andover, Massachusetts, prambach@aol.com

A PIECE OF MY MIND (Young RK, ed)

Dang, I miss reading JAMA. Used to read every issue, especially APOMM, even though some pieces are just too cheesy for my taste.

If you happen to live near a medical library, I also recommend BMJ's nontechnical articles. The last issue of every year is always devoted to wacky researches that get reported as serious medical discovery in main stream media...

wah, my boss throw his JAMA away without reading it.... probabaly I should start taking his....

Jun, thanks a million!

This is the link of the last issue of BMJ in 2005. Very interesting. I can't wait to read them.

http://bmj.bmjjournals.com/content/vol331/issue7531/

How Google is changing medicine
A medical portal is the logical next step


What a remarkable year it has been for those of us monitoring changes in the global information landscape. Since last Christmas, there has been a flurry of activity: the digitisation of the world's libraries began in earnest (despite the copyright fracas); open access publishing gained much-needed support internationally (especially in science and medicine); and Google, MSN Search, and Yahoo introduced a number of customisation tools for desktops and mobiles, podcasts, blogs, and video searches.1 2

Google's influence and power is writ large in the search field―so large that librarians are asking themselves some difficult questions. With all of this technology and freely available digital information, what will happen to physical libraries? Google's mission is to provide access to the world's information―but this is librarians' mission too. Will they be needed in the new information age?3

For all the benefits technology provides, it does provoke anxiety. In a recent letter in the New England Journal of Medicine, a New York rheumatologist describes a scene at rounds where a professor asked the presenting fellow to explain how he arrived at his diagnosis.4 Matter of factly, the reply came: "I entered the salient features into Google, and [the diagnosis] popped right up." The attending doctor was taken aback by the Google diagnosis. "Are we physicians no longer needed? Is an observer who can accurately select the findings to be entered in a Google search all we need for a diagnosis to appear―as if by magic?" In a post-Google world, where evidence based education is headed is anyone's guess.5 Googling your diagnosis; Googling your treatment―where is all this leading us?

Google has won the battle of the search engines, at least for the time being (see example in table), and its more serious minded offspring, Google Scholar, is rapidly gaining ground. Within a year of its release Google Scholar has led more visitors to many biomedical journal websites than has PubMed (J Sack, personal communication, 2005). Once they discover it, many medical students and doctors prefer Google Scholar.6 Although both tools benefit from Google's trademark simplicity, Google Scholar indexes more peer reviewed research and is especially quick in locating highly cited items and the proverbial needle in a haystack. Doctors are encouraged to consult Google Scholar for browsing and serendipitous discovery, not for literature reviews; and they should use the advanced search page to find words and names that occur often in the medical literature.


Scholar's mode of presentation hinders its usefulness and may take up valuable time. Google's algorithm―which weighs the significance of articles―may be partly to blame. The quantity of search results is acceptable, but quality is often not. Using some of the subject tags in advanced mode may offer some assistance, and more precision. Because current articles are not displayed first, and cannot be sorted, downloaded, or emailed―expect to do a lot of sifting.

Still, Scholar does simplify basic searching for doctors, and it's free, like PubMed (www.pubmed.gov). For anyone not affiliated with a large medical centre or university, the ability to search for and access research material that is available free on the web is a boon.

As scientific societies and associations consider moving their journals to open access models, Google Scholar and Elsevier's Scirus (www.scirus.com/srsapp/) will likely provide a reliable gateway to this information. The most useful feature to come out this year on Google Scholar is "cited by" referencing. This free tool links searchers to other scholarly papers that have cited the paper being viewed. Scholar also provides links to local library catalogues through its library link program and through an international database called WorldCat.7

In searches for clinical trials and systematic reviews, Google Scholar should of course never be used in isolation. However, it is a useful addition to PubMed, Cochrane, and other trusted sources of information, such as the TRIP or UpToDate databases, or a good medical librarian. For hard to find government or conference papers, don't forget to search regular Google in addition to Google Scholar.8

Some basic questions remain for Google Scholar. What does Google consider "scholarly"? Will Google ever tell us exactly what is in the database? Could the Google algorithm present the most current research at the top of the results display? And how often will Google update the database?9 10

What do we make of Google's future? Google's past success seems predicated on a simple business principle: do no evil. Founders Sergey Brin and Larry Page are said to be interested in using Google's computers to advance the cause of medical science. Apparently, Google's data mining techniques are well suited to analysing gene sequences in the human genome project. It may even be possible for patients to "google their own genes" one day.11

But "do no evil" is a far cry from "do what's best for humanity." Google is still a business. However, if it wishes to do something for medicine, Google should consider creating a medical portal. Call it Google Medicine; design an interface with medical filters and better algorithms; lead to the best evidence (just don't forget to consult with librarians about where the evidence is located). This kind of all purpose tool is badly needed in medicine, particularly for developing countries.

Build Google Medicine. The benefits to human health would be immeasurable.

The dirty little secret of oncology is that active treatment often does more harm to a patient than passive treatment (ie, palliative care). [Disclaimer: I am NOT a physician.] Sometimes (and not rarely) it is the treatment that kills the patient or hasten his death. There is simply no incentive for either the oncologist or the patient's family to "push" palliative care more clearly and strongly to the patient.

The patient doesn't want to give up hope either, but the finger that tips the balance is often the family members who demand "everything you can do," because they feel guilty if they do not make the doctors perform all the aggressive therapies. It is really a slippery thing -- the family do not need to personally inject poison into the patient's vein, nor do they not personally suffer the horrendous side effects of aggressive treatments. Patients may also feel pressure so as not to disappoint their hopeful family members and force themselves not to be "quitters" and continue "fighting," whatever that means.

The other side is this: Oncologists do not want to appear to be quitters, either. They are even more concerned about being sued by patients' family for not providing the most aggressive treatment. Also they cannot help but feel like a failure if their patients die. And they do not directly suffer from the aggressive therapy either. So it takes an enormous amount of courage and sympathy and sensibility to withdraw active, aggressive, invasive treatment and choose palliative treatment. It is risky financially and emotionally for them.

I seriously believe all terminally ill patients should undergo psychological counseling, with their family if possible. The unwillingness and fear of talking about death will only necessarily prolong and intensify agony and suffering.

The inadequacy of medical practice and education. Rather than more and more scientific break-through and billion-dollar new drugs, a little more mental health support would help everybody so much. But oh no we as a society are so scared of the mere mention of mental health care.

I seriously believe all terminally ill patients should undergo psychological counseling, with their family if possible. The unwillingness and fear of talking about death will only necessarily prolong and intensify agony and suffering.

The inadequacy of medical practice and education. Rather than more and more scientific break-through and billion-dollar new drugs, a little more mental health support would help everybody so much. But oh no we as a society are so scared of the mere mention of mental health care.

Totally agree!