A Piece of My Mind from JAMA
Posted: 2006-11-03 10:43
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)
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)