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Practicing Hope

Practicing Hope An unexpected email from my brother-in-law awaited me that morning. His brother Stephen, in his 50s, had been diagnosed seemingly overnight with pancreatic adenocarcinoma, metastatic to the liver and lungs. They had seen one oncologist already, he wrote, and were going to the academic center the next day. Subsequent events unfolded rapidly. An emergent biliary stent was needed. He didn’t improve. He was not a candidate for clinical trials. Hospice was recommended. From long-distance, via phone and email conversations, I witnessed them seek out 3 different medical oncology opinions. The family all understood that the cancer was incurable, but said to me they “were just looking for some hope.” I hesitated in what to say to them, how much of the oncologist should I bring to the conversation, how much the supportive relative. The day after seeing the third medical oncologist, he received 1 dose of single-agent gemcitabine, a reasonable choice for its low-toxicity profile and US Food and Drug Administration approval for quality-of-life benefit in patients with stage IV pancreatic cancer. He had a good day, and “was his old self” for 24 hours, but the next day he rapidly declined. He was admitted to the hospital, and the goals of care were changed to comfort. With his family by his side, he died the next morning, 5 days after that 1 dose of chemotherapy. A too short path that I wish I could say was not all too familiar, from having walked it alongside too many of my own patients. How do we as medical oncologists reconcile hope with advanced, incurable cancer? Numerous major cancer centers in the United States include the word “hope” as part of the name of the facility. A Google Internet search of the phrase “hope and cancer” yields 309 000 000 results.1 The Merriam-Webster dictionary defines hope as “to want something to happen or be true and think that it could happen or be true.”2 The National Coalition for Cancer Survivorship3 asserts that health care providers have an obligation to all patients with cancer, at any stage, to support their patients’ individual “visions of hope.” Simultaneously, it points out that most of us are not trained in different kinds of hope or how to discuss it with our patients. If patients and families continue to express to us their hope, despite often blunt conversations about prognosis, we label it as denial. So, how as oncologists do we counsel our patients with advanced stages of cancer illness, without taking away hope? After their loss and the devastation of rapid cancer diagnosis and death, the last thing I expected to hear from my brother-in-law and his family was an expression of gratitude. But in the midst of their grief they shared with me they were grateful for what they described as the “24 hours of hope” following that single dose of chemotherapy; gratitude for 1 last good day with their brother/father/husband/son. They were able to spend that 24 hours together sharing in a hope that had up until that point been lost. This renewal of hope was something they could hold on to during their grief and loss, even after his death. It was not therapeutic hope, but transcendental hope, the hope that is a condition of human experience4; “the thing with feathers,” in the poem by Emily Dickinson5: Hope is the thing with feathers. That perches in the soul, And sings the tune without the words, And never stops at all. I began to be more mindful of my own patients’ meaning behind “looking for some hope.” Perhaps I was guilty of assuming that when patients asked for hope, they always meant cure, even if that was not the case. I have been the oncologist who offered and gave the low dose of palliative chemotherapy despite chances of meaningful benefit being low. Perhaps we are tempted to use therapeutic hope, the kind we as physicians are most familiar with, to try to help patients who are seeking transcendental hope, the kind we are less familiar or comfortable with as health care professionals. But can transcendental hope exist as separate from therapeutic hope? Václev Havel, the late writer and politician, described hope as “a state of mind, not a state of the world.”6 His definition conveys that hope and optimism are not the same thing. Transcendental hope is a part of our core beings, which comes from within, not without. This deep inner hope is not dependent on prognosis. It is an “orientation” of the spirit and the heart. Hope is not ours to give to our patients, and if we think it is our responsibility to provide it, we will burn out, because it would be both naïve and arrogant to think we can.4 Rather, our duty is to honor and respect our patients as fellow human beings, to preserve dignity, and to remain open to possibilities of different forms of hope that might exist for our patients and their families.4 Another, archaic, dictionary definition of hope is “trust and reliance.”2 To talk to our patients about hospice without them misinterpreting that we are trying to take away their hope, there must be a physician-patient relationship based on trust. If we speak directly and truthfully, we can still speak from the “gates of hope,” which does not necessarily mean optimism, or self-righteousness, or false cheer.7 As oncologists, we work with hospice teams in order for our patients to keep their quality and dignity at end of life. Hospice is not “giving up,” for hospice could not exist without hope. Without hope, there would be no quality. Without quality, there would be no dignity. And without dignity, there would be only despair. The object of hope cannot be the avoidance of death as that is an impossibility for all of us. “Ultimate hope” is not about a cure but a source of meaning. The individual journey for each person to arrive at this source of transcendental meaning is one of the spiritual tasks of the dying.4 Sometimes from the very first visit our patients are ready and able to talk about end of life from stage IV cancer. They might express a desire to try palliative chemotherapy, yet they also tell us that they can envision the moment they will choose hospice care. One of my patients who did well on chemotherapy for about 1 year had a minor complication that landed her one night in the hospital shortly after switching to second-line chemotherapy. The next morning she decided that was the moment; it was time for hospice. I found myself reflecting on a prior visit, when she told me a little about her life, which she described as being very simple. She found joy each night in watching the sunset and was happy to have a view of the water from her bedroom. Sometimes when the next cycle of chemotherapy was approaching, she would consider whether she was going to continue or not, and would find herself deciding that as good as that particular night’s sunset had been, maybe the next night’s would be even a little better. That wonder of what the next night’s sunset would bring was enough for her to decide to try another treatment. For if every time the sun set, all we did was despair at the darkness, how could any of us face the disappearance of the light? As I watch the sun set from my window, I think of her gazing on the same view, choosing not to despair, but to wonder what is to come. It has taken me nearly a decade in oncology practice to begin to have a deeper understanding of hope and its forms that exist beyond what can be measured in response rates and Response Evaluation Criteria in Solid Tumors (RECIST) criteria. In this era of newer and better targeted cancer chemotherapies and immunotherapies, we are thankfully able to offer therapeutic hope to more patients with stage IV disease than ever before, but we still face all too often in our practices the cancers like Stephen’s that attack like a dragon on an unsuspecting village. We must have other methods to help our patients when our therapies cannot. We can bear witness to our patients’ search for meaning, even as we might struggle with defining what this source of meaning is for ourselves. As I was in the process of revising this article, a new ending presented itself. My early afternoon patient was there for her fourth week of palliative chemotherapy. She had pursued alternative therapies first. By the time she came to ask me about chemotherapy, she had very advanced disease. She and her husband both were able to tell me they knew she likely had less than 6 months to live, but her quality of life had become miserable. We decided together to try single-agent chemotherapy for palliation. I was thankful on that day that she was showing signs of response with gradual clinical improvement. In a moment that felt more than coincidental, she turned to me and said, “I feel like I have hope again.” In the recent past, I would have worried that she was misunderstanding the intent of our chemotherapy, that she was telling me she was hoping for cure, despite our initial conversations. But I knew instead she was talking about inner hope. Her orientation of heart and spirit. A brief moment in a busy clinic day where time stood still for half a second; a moment of human connection that revealed what I had been struggling to put into words: the practice of medicine is not, after all, separate from the practice of hope. Back to top Article Information Corresponding Author: Jennifer Lycette, MD, Columbia Memorial Hospital/OHSU Cancer Care Center, 2111 Exchange St, Astoria, OR 97103 (lycettej@ohsu.edu). Published Online: March 3, 2016. doi:10.1001/jamaoncol.2015.6413. Conflict of Interest Disclosures: None reported. Additional Contributions: We thank the patient’s family for granting permission to publish this information. References 1. Google. http://www.google.com. Accessed November 30, 2015. 2. Merriam-Webster. http://www.merriam-webster.com/dictionary/hope. Accessed November 30, 2015. 3. National Coalition for Cancer Survivorship. Cancer Resources: Staying Hopeful. http://www.canceradvocacy.org/resources/remaining-hopeful/. Accessed November 30, 2015. 4. Sulmasy DP. Hope and the care of the dying patient: a Catholic, Christian perspective. Yale Journal for Humanities in Medicine. http://yjhm.yale.edu/archives/spirit2003/hope/dsulmasyprint.htm. Published May 10, 2002. Accessed November 30, 2015. 5. Franklin RW, ed. The Poems of Emily Dickinson. Cambridge, MA: Harvard University Press; 1999:333. 6. Havel V. The Politics of Hope, in Disturbing the Peace. Wilson P, trans. New York, NY: Alfred A. Knop Inc; 1990:181,186. 7. Safford V. The Small Work in the Great Work. In: Loeb PR, ed. The Impossible Will Take a Little While: Perseverance and Hope in Troubled Times. New York, NY: Basic Books; 2014:229. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMA Oncology American Medical Association

Practicing Hope

JAMA Oncology , Volume 2 (4) – Apr 1, 2016

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Publisher
American Medical Association
Copyright
Copyright © 2016 American Medical Association. All Rights Reserved.
ISSN
2374-2437
eISSN
2374-2445
DOI
10.1001/jamaoncol.2015.6413
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Abstract

An unexpected email from my brother-in-law awaited me that morning. His brother Stephen, in his 50s, had been diagnosed seemingly overnight with pancreatic adenocarcinoma, metastatic to the liver and lungs. They had seen one oncologist already, he wrote, and were going to the academic center the next day. Subsequent events unfolded rapidly. An emergent biliary stent was needed. He didn’t improve. He was not a candidate for clinical trials. Hospice was recommended. From long-distance, via phone and email conversations, I witnessed them seek out 3 different medical oncology opinions. The family all understood that the cancer was incurable, but said to me they “were just looking for some hope.” I hesitated in what to say to them, how much of the oncologist should I bring to the conversation, how much the supportive relative. The day after seeing the third medical oncologist, he received 1 dose of single-agent gemcitabine, a reasonable choice for its low-toxicity profile and US Food and Drug Administration approval for quality-of-life benefit in patients with stage IV pancreatic cancer. He had a good day, and “was his old self” for 24 hours, but the next day he rapidly declined. He was admitted to the hospital, and the goals of care were changed to comfort. With his family by his side, he died the next morning, 5 days after that 1 dose of chemotherapy. A too short path that I wish I could say was not all too familiar, from having walked it alongside too many of my own patients. How do we as medical oncologists reconcile hope with advanced, incurable cancer? Numerous major cancer centers in the United States include the word “hope” as part of the name of the facility. A Google Internet search of the phrase “hope and cancer” yields 309 000 000 results.1 The Merriam-Webster dictionary defines hope as “to want something to happen or be true and think that it could happen or be true.”2 The National Coalition for Cancer Survivorship3 asserts that health care providers have an obligation to all patients with cancer, at any stage, to support their patients’ individual “visions of hope.” Simultaneously, it points out that most of us are not trained in different kinds of hope or how to discuss it with our patients. If patients and families continue to express to us their hope, despite often blunt conversations about prognosis, we label it as denial. So, how as oncologists do we counsel our patients with advanced stages of cancer illness, without taking away hope? After their loss and the devastation of rapid cancer diagnosis and death, the last thing I expected to hear from my brother-in-law and his family was an expression of gratitude. But in the midst of their grief they shared with me they were grateful for what they described as the “24 hours of hope” following that single dose of chemotherapy; gratitude for 1 last good day with their brother/father/husband/son. They were able to spend that 24 hours together sharing in a hope that had up until that point been lost. This renewal of hope was something they could hold on to during their grief and loss, even after his death. It was not therapeutic hope, but transcendental hope, the hope that is a condition of human experience4; “the thing with feathers,” in the poem by Emily Dickinson5: Hope is the thing with feathers. That perches in the soul, And sings the tune without the words, And never stops at all. I began to be more mindful of my own patients’ meaning behind “looking for some hope.” Perhaps I was guilty of assuming that when patients asked for hope, they always meant cure, even if that was not the case. I have been the oncologist who offered and gave the low dose of palliative chemotherapy despite chances of meaningful benefit being low. Perhaps we are tempted to use therapeutic hope, the kind we as physicians are most familiar with, to try to help patients who are seeking transcendental hope, the kind we are less familiar or comfortable with as health care professionals. But can transcendental hope exist as separate from therapeutic hope? Václev Havel, the late writer and politician, described hope as “a state of mind, not a state of the world.”6 His definition conveys that hope and optimism are not the same thing. Transcendental hope is a part of our core beings, which comes from within, not without. This deep inner hope is not dependent on prognosis. It is an “orientation” of the spirit and the heart. Hope is not ours to give to our patients, and if we think it is our responsibility to provide it, we will burn out, because it would be both naïve and arrogant to think we can.4 Rather, our duty is to honor and respect our patients as fellow human beings, to preserve dignity, and to remain open to possibilities of different forms of hope that might exist for our patients and their families.4 Another, archaic, dictionary definition of hope is “trust and reliance.”2 To talk to our patients about hospice without them misinterpreting that we are trying to take away their hope, there must be a physician-patient relationship based on trust. If we speak directly and truthfully, we can still speak from the “gates of hope,” which does not necessarily mean optimism, or self-righteousness, or false cheer.7 As oncologists, we work with hospice teams in order for our patients to keep their quality and dignity at end of life. Hospice is not “giving up,” for hospice could not exist without hope. Without hope, there would be no quality. Without quality, there would be no dignity. And without dignity, there would be only despair. The object of hope cannot be the avoidance of death as that is an impossibility for all of us. “Ultimate hope” is not about a cure but a source of meaning. The individual journey for each person to arrive at this source of transcendental meaning is one of the spiritual tasks of the dying.4 Sometimes from the very first visit our patients are ready and able to talk about end of life from stage IV cancer. They might express a desire to try palliative chemotherapy, yet they also tell us that they can envision the moment they will choose hospice care. One of my patients who did well on chemotherapy for about 1 year had a minor complication that landed her one night in the hospital shortly after switching to second-line chemotherapy. The next morning she decided that was the moment; it was time for hospice. I found myself reflecting on a prior visit, when she told me a little about her life, which she described as being very simple. She found joy each night in watching the sunset and was happy to have a view of the water from her bedroom. Sometimes when the next cycle of chemotherapy was approaching, she would consider whether she was going to continue or not, and would find herself deciding that as good as that particular night’s sunset had been, maybe the next night’s would be even a little better. That wonder of what the next night’s sunset would bring was enough for her to decide to try another treatment. For if every time the sun set, all we did was despair at the darkness, how could any of us face the disappearance of the light? As I watch the sun set from my window, I think of her gazing on the same view, choosing not to despair, but to wonder what is to come. It has taken me nearly a decade in oncology practice to begin to have a deeper understanding of hope and its forms that exist beyond what can be measured in response rates and Response Evaluation Criteria in Solid Tumors (RECIST) criteria. In this era of newer and better targeted cancer chemotherapies and immunotherapies, we are thankfully able to offer therapeutic hope to more patients with stage IV disease than ever before, but we still face all too often in our practices the cancers like Stephen’s that attack like a dragon on an unsuspecting village. We must have other methods to help our patients when our therapies cannot. We can bear witness to our patients’ search for meaning, even as we might struggle with defining what this source of meaning is for ourselves. As I was in the process of revising this article, a new ending presented itself. My early afternoon patient was there for her fourth week of palliative chemotherapy. She had pursued alternative therapies first. By the time she came to ask me about chemotherapy, she had very advanced disease. She and her husband both were able to tell me they knew she likely had less than 6 months to live, but her quality of life had become miserable. We decided together to try single-agent chemotherapy for palliation. I was thankful on that day that she was showing signs of response with gradual clinical improvement. In a moment that felt more than coincidental, she turned to me and said, “I feel like I have hope again.” In the recent past, I would have worried that she was misunderstanding the intent of our chemotherapy, that she was telling me she was hoping for cure, despite our initial conversations. But I knew instead she was talking about inner hope. Her orientation of heart and spirit. A brief moment in a busy clinic day where time stood still for half a second; a moment of human connection that revealed what I had been struggling to put into words: the practice of medicine is not, after all, separate from the practice of hope. Back to top Article Information Corresponding Author: Jennifer Lycette, MD, Columbia Memorial Hospital/OHSU Cancer Care Center, 2111 Exchange St, Astoria, OR 97103 (lycettej@ohsu.edu). Published Online: March 3, 2016. doi:10.1001/jamaoncol.2015.6413. Conflict of Interest Disclosures: None reported. Additional Contributions: We thank the patient’s family for granting permission to publish this information. References 1. Google. http://www.google.com. Accessed November 30, 2015. 2. Merriam-Webster. http://www.merriam-webster.com/dictionary/hope. Accessed November 30, 2015. 3. National Coalition for Cancer Survivorship. Cancer Resources: Staying Hopeful. http://www.canceradvocacy.org/resources/remaining-hopeful/. Accessed November 30, 2015. 4. Sulmasy DP. Hope and the care of the dying patient: a Catholic, Christian perspective. Yale Journal for Humanities in Medicine. http://yjhm.yale.edu/archives/spirit2003/hope/dsulmasyprint.htm. Published May 10, 2002. Accessed November 30, 2015. 5. Franklin RW, ed. The Poems of Emily Dickinson. Cambridge, MA: Harvard University Press; 1999:333. 6. Havel V. The Politics of Hope, in Disturbing the Peace. Wilson P, trans. New York, NY: Alfred A. Knop Inc; 1990:181,186. 7. Safford V. The Small Work in the Great Work. In: Loeb PR, ed. The Impossible Will Take a Little While: Perseverance and Hope in Troubled Times. New York, NY: Basic Books; 2014:229.

Journal

JAMA OncologyAmerican Medical Association

Published: Apr 1, 2016

Keywords: physician-patient relations,end-of-life care,cancer,terminal patient care,pancreatic neoplasms,personal narratives,terminally ill,hospice care,pancreatic cancer,cancer therapy,hope

References