Commentary
Toward Eubiosia: Bridging Oncology and Palliative Care DON S. DIZON Massachusetts General Hospital, Boston, Massachusetts, USA Disclosures of potential conflicts of interest may be found at the end of this article.
on. Our literature does not guide us clearly on what it means to do just that: although 65% of articles reported on early integration, only 20% actually provided specific timing that defined this concept. Beyond the procedural and institutional barriers, Winkler et al. report the findings of a qualitative study that involved 18 clinicians (12 oncologists, 6 nurses) and investigated how one group communicated with patients about the end of life. They describe two approaches: proactive facilitation (i.e., clinician-initiated discussion) and a more passive stance (i.e., wait until the patient brings it up). Each reflects a delicate balance of the objective data in oncology (the evidence basis of our recommendations) and the emotional stances that both clinician and patient bring to each visit. Some are willing to approach the elephant in the room head on, whereas others are more comfortable keeping it in the proverbial background, waiting to take the patient’s lead. Regardless of what one thinks “early integration” means, and regardless of how one approaches such difficult conversations, the importance of that information, that conversation, and that knowledge cannot be emphasized enough. Patients look to us as oncology professionals for guidance and truth—truth so they can make informed decisions about treatment for cancer and about their lives, because of cancer and despite it. Part of that truth is to help point out changes in prognosis: when the cancer is no longer curable; when treatment is no longer a good idea; when they have reached a terminal phase of their cancer; and, yes, when they are nearing death. The significance of these moments, for both our patients and ourselves, is illustrated in the two narratives published in this issue. Dr. Tanneberger reflects on his long experience in oncology, charting a career that has spanned four decades, and introduces us to the term eubiosia, which means dignity in life “until
Correspondence: Don S. Dizon, M.D., 55 Fruit Street, Yawkey 9E, Boston, Massachusetts 02114, USA. Telephone: 617-724-4000; E-Mail: [email protected] Received December 1, 2014; accepted for publication December 1, 2014; first published online in The Oncologist Express on December 9, 2014. ©AlphaMed Press 1083-7159/2014/ $20.00/0 http://dx.doi.org/10.1634/theoncologist.2014-0462
The Oncologist 2015;20:5–6 www.TheOncologist.com
©AlphaMed Press 2015
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Don S. Dizon
She wasn’t my patient, but she was my friend. When she was diagnosed with breast cancer, I had to put aside the fact that I was an oncologist so I could support her.We talked about meetings with her doctors and what they said. She was very comfortable with her team, and the treatment plan laid out for her made sense to us both. Over the next few months she underwent neoadjuvant chemotherapy, bilateral mastectomies, postmastectomy radiation therapy. Then she was deemed to be in remission. Unfortunately, within 18 months, she had developed metastatic disease. Again, acting as friend and not as doctor, I quietly listened as she spoke of trying to remain hopeful but of fearing the future—what would become of her boys, her mother, her husband. She wanted to live, but she also knew the odds of her living more than a few years were not good. As months passed, treatment took its toll on her, and I wondered if her team talked with her about palliative care. She would tell me only of the next treatment planned and what the latest computed tomography scan showed. The conversations she had had with her doctors, as she related them to me, never seemed to touch on the elephant that was very clearly in that room. This situation illustrates a dilemma for many oncologists. How do we approach patients with advanced and progressive cancer and yet not rob them of hope? In addition, although there is widespread agreement that early integration of palliative care is important, the barriers that exist for oncology clinicians and their patients are ever present. In this edition of The Oncologist, four articles lend context to the issues regarding the bridge between palliative care and oncology. Hui et al. present a systematic review showing the lack of a universal definition of what, exactly, integration between these specialties entails. Furthermore, they identify a potential factor to explain why clinicians do not engage with patients early
6
safety for Vasily and enhanced care and compassion for his providers. Although different in their scope and objectives, these four papers provide a view into the complexity and importance of communication among oncologists and our patients, of palliative care, and of acknowledging the end of life. They illustrate the work that has been done toward earlier and wider access to integrated palliative and oncology care. In addition, they point a way forward for us by standardizing integration and concepts of early referral and valuing quality of life as much as any tumor response measurement. Within the narratives, the science finds a new voice; hopefully, it is one to which we all will listen. Ultimately, they remind us that our goals must be to help our patients achieve peace and joy, even at the end of life. The goal of eubiosia is what I wished for my friend and what I strive to achieve for each of my patients.
DISCLOSURES The author indicated no financial relationships.
EDITOR’S NOTE: Please see the related articles in this issue: “What Keeps Oncologists From Addressing Palliative Care Early on With Incurable Cancer Patients? An Active Stance Seems Key,” by Timo A. Pfeil et al. (page 56) “Integration of Oncology and Palliative Care: A Systematic Review,” by David Hui et al. (page 77) “Integrative Palliative Care: Between Antipathy and Grace,” by Eran Ben-Arye (page 84) “International Collaboration and the Importance of Eubiosia,” by Stephan Tanneberger (page 86)
OTncologist he
©AlphaMed Press 2015
®
Downloaded from http://theoncologist.alphamedpress.org/ by guest on April 7, 2015
the last moment.” He shares his own experiences with two patients from very different parts of the world. In one experience, a woman with metastatic breast cancer shows us that one can live alone and not be lonely. She finds companionship with a bird that she had saved from death. It is pet therapy as eubiosia. The other is the experience of a man living in India who finds happiness and peace in the midst of family, despite the fact that he lies on a bed in the street.These anecdotes emphasize that, often, it is not technology and medicine that lead to good quality of life but rather the simple things—companionship, friendship, family. These themes are brought home by Dr. Ben-Arye, who writes of an experience caring for Vasily, a 51-year-old man with metastatic prostate cancer. Caring for him alongside his nurse, Bella, they share a memory of their ancestors from World War II. Intertwining stories are revealed, of Vasily’s grandfather as a German Gestapo agent, of Bella’s grandfather as a Soviet soldier, and of the author’s grandfather as a Jew in the British Army. That they would recount these memories together duringthe last moments of Vasily’s life seems shocking. However, the memories of the past had been replaced with
Toward Eubiosia: Oncology and Palliative Care
Subspecialty Collections
This article, along with others on similar topics, appears in the following collection(s): Narratives in Oncology http://theoncologist.alphamedpress.org//cgi/collection/narratives-in-oncology Symptom Management and Supportive Care http://theoncologist.alphamedpress.org//cgi/collection/symptom-management-and-supportive-care
Downloaded from http://theoncologist.alphamedpress.org/ by guest on April 7, 2015
Toward Eubiosia: Bridging Oncology and Palliative Care Don S. Dizon The Oncologist 2015, 20:5-6. doi: 10.1634/theoncologist.2014-0462 originally published online December 9, 2014
Downloaded from http://theoncologist.alphamedpress.org/ by guest on April 7, 2015
The online version of this article, along with updated information and services, is located on the World Wide Web at: http://theoncologist.alphamedpress.org/content/20/1/5
Toward Eubiosia: Bridging Oncology and Palliative Care DON S. DIZON Massachusetts General Hospital, Boston, Massachusetts, USA Disclosures of potential conflicts of interest may be found at the end of this article.
on. Our literature does not guide us clearly on what it means to do just that: although 65% of articles reported on early integration, only 20% actually provided specific timing that defined this concept. Beyond the procedural and institutional barriers, Winkler et al. report the findings of a qualitative study that involved 18 clinicians (12 oncologists, 6 nurses) and investigated how one group communicated with patients about the end of life. They describe two approaches: proactive facilitation (i.e., clinician-initiated discussion) and a more passive stance (i.e., wait until the patient brings it up). Each reflects a delicate balance of the objective data in oncology (the evidence basis of our recommendations) and the emotional stances that both clinician and patient bring to each visit. Some are willing to approach the elephant in the room head on, whereas others are more comfortable keeping it in the proverbial background, waiting to take the patient’s lead. Regardless of what one thinks “early integration” means, and regardless of how one approaches such difficult conversations, the importance of that information, that conversation, and that knowledge cannot be emphasized enough. Patients look to us as oncology professionals for guidance and truth—truth so they can make informed decisions about treatment for cancer and about their lives, because of cancer and despite it. Part of that truth is to help point out changes in prognosis: when the cancer is no longer curable; when treatment is no longer a good idea; when they have reached a terminal phase of their cancer; and, yes, when they are nearing death. The significance of these moments, for both our patients and ourselves, is illustrated in the two narratives published in this issue. Dr. Tanneberger reflects on his long experience in oncology, charting a career that has spanned four decades, and introduces us to the term eubiosia, which means dignity in life “until
Correspondence: Don S. Dizon, M.D., 55 Fruit Street, Yawkey 9E, Boston, Massachusetts 02114, USA. Telephone: 617-724-4000; E-Mail: [email protected] Received December 1, 2014; accepted for publication December 1, 2014; first published online in The Oncologist Express on December 9, 2014. ©AlphaMed Press 1083-7159/2014/ $20.00/0 http://dx.doi.org/10.1634/theoncologist.2014-0462
The Oncologist 2015;20:5–6 www.TheOncologist.com
©AlphaMed Press 2015
Downloaded from http://theoncologist.alphamedpress.org/ by guest on April 7, 2015
Don S. Dizon
She wasn’t my patient, but she was my friend. When she was diagnosed with breast cancer, I had to put aside the fact that I was an oncologist so I could support her.We talked about meetings with her doctors and what they said. She was very comfortable with her team, and the treatment plan laid out for her made sense to us both. Over the next few months she underwent neoadjuvant chemotherapy, bilateral mastectomies, postmastectomy radiation therapy. Then she was deemed to be in remission. Unfortunately, within 18 months, she had developed metastatic disease. Again, acting as friend and not as doctor, I quietly listened as she spoke of trying to remain hopeful but of fearing the future—what would become of her boys, her mother, her husband. She wanted to live, but she also knew the odds of her living more than a few years were not good. As months passed, treatment took its toll on her, and I wondered if her team talked with her about palliative care. She would tell me only of the next treatment planned and what the latest computed tomography scan showed. The conversations she had had with her doctors, as she related them to me, never seemed to touch on the elephant that was very clearly in that room. This situation illustrates a dilemma for many oncologists. How do we approach patients with advanced and progressive cancer and yet not rob them of hope? In addition, although there is widespread agreement that early integration of palliative care is important, the barriers that exist for oncology clinicians and their patients are ever present. In this edition of The Oncologist, four articles lend context to the issues regarding the bridge between palliative care and oncology. Hui et al. present a systematic review showing the lack of a universal definition of what, exactly, integration between these specialties entails. Furthermore, they identify a potential factor to explain why clinicians do not engage with patients early
6
safety for Vasily and enhanced care and compassion for his providers. Although different in their scope and objectives, these four papers provide a view into the complexity and importance of communication among oncologists and our patients, of palliative care, and of acknowledging the end of life. They illustrate the work that has been done toward earlier and wider access to integrated palliative and oncology care. In addition, they point a way forward for us by standardizing integration and concepts of early referral and valuing quality of life as much as any tumor response measurement. Within the narratives, the science finds a new voice; hopefully, it is one to which we all will listen. Ultimately, they remind us that our goals must be to help our patients achieve peace and joy, even at the end of life. The goal of eubiosia is what I wished for my friend and what I strive to achieve for each of my patients.
DISCLOSURES The author indicated no financial relationships.
EDITOR’S NOTE: Please see the related articles in this issue: “What Keeps Oncologists From Addressing Palliative Care Early on With Incurable Cancer Patients? An Active Stance Seems Key,” by Timo A. Pfeil et al. (page 56) “Integration of Oncology and Palliative Care: A Systematic Review,” by David Hui et al. (page 77) “Integrative Palliative Care: Between Antipathy and Grace,” by Eran Ben-Arye (page 84) “International Collaboration and the Importance of Eubiosia,” by Stephan Tanneberger (page 86)
OTncologist he
©AlphaMed Press 2015
®
Downloaded from http://theoncologist.alphamedpress.org/ by guest on April 7, 2015
the last moment.” He shares his own experiences with two patients from very different parts of the world. In one experience, a woman with metastatic breast cancer shows us that one can live alone and not be lonely. She finds companionship with a bird that she had saved from death. It is pet therapy as eubiosia. The other is the experience of a man living in India who finds happiness and peace in the midst of family, despite the fact that he lies on a bed in the street.These anecdotes emphasize that, often, it is not technology and medicine that lead to good quality of life but rather the simple things—companionship, friendship, family. These themes are brought home by Dr. Ben-Arye, who writes of an experience caring for Vasily, a 51-year-old man with metastatic prostate cancer. Caring for him alongside his nurse, Bella, they share a memory of their ancestors from World War II. Intertwining stories are revealed, of Vasily’s grandfather as a German Gestapo agent, of Bella’s grandfather as a Soviet soldier, and of the author’s grandfather as a Jew in the British Army. That they would recount these memories together duringthe last moments of Vasily’s life seems shocking. However, the memories of the past had been replaced with
Toward Eubiosia: Oncology and Palliative Care
Subspecialty Collections
This article, along with others on similar topics, appears in the following collection(s): Narratives in Oncology http://theoncologist.alphamedpress.org//cgi/collection/narratives-in-oncology Symptom Management and Supportive Care http://theoncologist.alphamedpress.org//cgi/collection/symptom-management-and-supportive-care
Downloaded from http://theoncologist.alphamedpress.org/ by guest on April 7, 2015
Toward Eubiosia: Bridging Oncology and Palliative Care Don S. Dizon The Oncologist 2015, 20:5-6. doi: 10.1634/theoncologist.2014-0462 originally published online December 9, 2014
Downloaded from http://theoncologist.alphamedpress.org/ by guest on April 7, 2015
The online version of this article, along with updated information and services, is located on the World Wide Web at: http://theoncologist.alphamedpress.org/content/20/1/5
