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Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20
Chronic Cancer: Bringing Palliative Care Into the Conversation Susan Gerbino PhD LCSW
a
a
Zelda Foster Studies Program in Palliative and End-of-Life Care, New York University Silver School of Social Work , New York , New York , USA Published online: 09 Jan 2014.
Click for updates To cite this article: Susan Gerbino PhD LCSW (2014) Chronic Cancer: Bringing Palliative Care Into the Conversation, Social Work in Health Care, 53:1, 74-80, DOI: 10.1080/00981389.2013.834034 To link to this article: http://dx.doi.org/10.1080/00981389.2013.834034
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
Social Work in Health Care, 53:74–80, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0098-1389 print/1541-034X online DOI: 10.1080/00981389.2013.834034
Chronic Cancer: Bringing Palliative Care Into the Conversation SUSAN GERBINO, PhD, LCSW
Downloaded by [University of Phoenix] at 04:52 09 February 2015
Zelda Foster Studies Program in Palliative and End-of-Life Care, New York University Silver School of Social Work, New York, New York, USA
Palliative care is a treatment model that aims to relieve patient suffering and improve quality of life, and is essential for those living with chronic cancer. However, most palliative care referrals are made as a last resort when all other treatment options have failed. This article argues that social workers have an important role in early palliative care discussions because of their unique skill set. Techniques for early introduction of palliative care are addressed, as are ways for empowering patient advocacy. A case narrative of a young woman with chronic cancer is included as an example of the need for ongoing palliative care conversations. KEYWORDS palliative care, oncology, social work
CHRONIC CANCER: BRINGING PALLIATIVE CARE INTO THE CONVERSATION As the articles in this special issue on Coping with Chronic Cancer discuss, many people are living a long time with cancer and its attendant sequelae. These include making ongoing complex decisions about treatment options; managing short and long-term side effects of surgery, chemotherapy and radiation; dealing with changes in body image and sexual functioning; recalibrating interpersonal relationships; reassessing future plans; coping with assaults to one’s identity and sense of self; and living with the knowledge that cure may no longer be possible.
Received August 1, 2013; accepted August 8, 2013. Address correspondence to Susan Gerbino, PhD, LCSW, Zelda Foster Studies Program in Palliative and End-of-Life Care, New York University Silver School of Social Work, 1 Washington Square North, New York, NY 10003, USA. E-mail: [email protected] 74
Downloaded by [University of Phoenix] at 04:52 09 February 2015
Chronic Cancer and Palliative Care
75
Palliative care is an approach that includes recognition of all of these issues and pledges to relieve suffering and improve quality of life throughout the disease continuum (World Health Organization, 2013). It addresses pain in its totality—physical, psychological, social, spiritual and existential. It is usually provided by an interdisciplinary team, including social work. At its best, palliative care can respectfully accompany people and their loved ones through their journeys as they assert their humanness. It can help them reclaim their full selves and protest the reductive dichotomous identities and qualities the health care system often assigns them—good patient, difficult patient; compliant, non-compliant; in denial, understands diagnosis and prognosis; overly-involved family, distant family. Yet, despite the seeming ideal match between palliative care and chronic cancer, it is most often offered at the end of life and as something for patients and families to choose when “there is nothing else we can do.” Palliative care continues to be confused with hospice care, which is indeed offered at the end of life. Hospice requires physician certification of a prognosis of six months or less and is for people who are no longer receiving curative care. Palliative care includes aggressive symptom management and curative treatments. It can be appropriate at any point, starting at the time of diagnosis. In fact, a recent study found that patients with metastatic non-small-cell lung cancer lived longer when they received an outpatient palliative care consult within 3 months of diagnosis, compared to those who only received the standard medical care (Temel et al., 2010). One way to move palliative care “upstream” is to develop an education model that will create a cadre of generalist palliative care physicians who have the knowledge to offer palliative care whenever appropriate (Quill & Abernathy, 2013). This article argues that social work has an equally important contribution to make in offering palliative care along the illness trajectory. The profession’s ethical commitment to connecting people to and educating them about all possible resources and its expertise in navigating difficult conversations make social work an ideal champion for palliative care.
INTRODUCING PALLIATIVE CARE AS A RESOURCE Jose is a 52-year-old man with curable prostate cancer, who came to me for help when diagnosed. In discussing the available treatment options and services with him and his partner, we discussed palliative care in the context of pain and symptom management. They were prepared for the possibility that mentioning palliative care to their physicians or to family and friends might be met with the statement that palliative care is only needed when a person is going to die. Jose does not need palliative care now and may never need it, but talking about it up front might make it a more palatable option down the road. In addition, hopefully he will educate others, including his physician.
Downloaded by [University of Phoenix] at 04:52 09 February 2015
76
S. Gerbino
Social workers in medical settings have long recognized the needs of people with cancer (Fobair et al., 2009). Social workers intersect with them and their loved ones at many points in the illness trajectory but they are most often referred at the time of initial diagnosis, the first re-occurrence and/or subsequent re-occurrences. Often the framework is crisis intervention, focused on coping, problemsolving and practical help. Social workers help to translate the barrage of medical information and terminology into understandable, everyday language. They provide individual and group counseling, as discussed in this special issue. They also connect patients and families to resources for the myriad of needs that may arise, and provide educational brochures related to their specific cancer and treatments. Yet, palliative care is often missing from the resource list, even when there are existing programs. Introducing palliative care as a concept and resource should be an integral part of social work practice with chronic and life-limiting illness. It should be part of the hospital discharge package along with other more “neutral” services such as Visiting Nurse Services, American Cancer Society, local support groups and financial resources. Including palliative care information would be particularly appropriate for people with initial diagnoses of advanced cancer or rare, complicated types of cancer that will include multiple levels of treatment. It could be a one-page handout with basic information about palliative care, a listing of accessible programs, and Uniform Resource Locator (URL) links to user-friendly palliative care websites such as Get Palliative Care (Center to Advance Palliative Care, 2012). Social workers in all settings need to be educated about palliative care. In my academic role, I am regularly consulted by colleagues, students, and alumni who are working with people with cancer or whose personal lives have been touched by cancer. They often have no idea what palliative care is, despite being associated with a social work school that has three very visible palliative care educational programs. They are working with people with cancer in homeless shelters, in their private practices, in schools and college counseling centers, in senior programs—in short, in any field of social work practice. Even knowing the bare minimum about palliative care and understanding its place throughout the illness trajectory would make an enormous difference.
BRINGING PALLIATIVE CARE INTO THE CONVERSATION: FORKS IN THE ROAD In his article about advance care planning, Barnard (2002) speaks of “nodal moments” between physicians and patients (pp. 478–479). This is when the physician realizes there is a shift in the balance between health and decline and there is an opportunity for a discussion about the patient’s goals and
Downloaded by [University of Phoenix] at 04:52 09 February 2015
Chronic Cancer and Palliative Care
77
hopes. These moments often occur well before the person is at the end of life. Social work clinicians experience these moments as well. Barnard believes the physician may realize it before the patient, but I would argue that sometimes patients get there first. When they do, they throw out small feelers to us—tentatively, casually, cautiously—to test us. If we have the insight to recognize the fork in the road and to follow it, we will have entered a dialogue about palliative care. Palliative care is not one conversation— rather, it is a series of small, intimate talks—building rapport, establishing trust, listening with our hearts. When we realize we’ve missed a chance, we must have the courage to go back and say: “I have been thinking about our conversation, and I think I missed something—I think you were trying to tell me something—I’m sorry—can we go back to it?” Erika∗∗ was 27 years old and a two-year survivor of metastatic breast cancer when she was referred to me privately by her oncologist, who described her as difficult, demanding and “in denial.” I had worked with this oncologist many times in the past and was surprised by her characterization of Erika, as she rarely spoke about patients that way. Erika was also homeless, living out of her car, having fallen behind on her rent. She lost her job because she had missed too many days of work and she refused to move back home with her parents. Erika described herself as a “tough Irish lass” who hated organized religion but was deeply spiritual. She had an on and off again boyfriend who had stuck with her through all the ups and downs of her illness. They were not together when I first met her because she worried she was staying with him because of her illness and how she looked. The first time I saw her she was wearing a bright red wig and purple suede boots. She was rail thin with the telltale signs of steroids—a large moon face that she promptly told me she detested. She said the wig and the boots made her feel sexy and desirable despite the ravages of chemotherapy and radiation. When I asked how I could be helpful to her, she said she needed all her health care providers to “love her.” I said I couldn’t promise that but joked that she was off to a good start as I loved the wig and the boots. She laughed and I knew we had established a good connection. I worked with Erika for 7 years until her death. During that time I did grow to love her. She taught me a tremendous amount about living with chronic cancer, and about living in general. There were many forks in the road in my work with Erika. She had an indomitable spirit and an optimism that could easily be mistaken for denial. After a CT scan revealed brain metastases, she left a message on my voice mail saying she had “good” news—there were “only 10 spots.” She knew that ∗∗
While many of the details of Erika’s life have been changed to protect her confidentiality, she specifically requested that if I wrote about her, I would not change her name—"Erika with a K." This article is dedicated to her memory.
78
S. Gerbino
Downloaded by [University of Phoenix] at 04:52 09 February 2015
she could die but talking about it explicitly was mostly off limits. Nonetheless, we spoke early and often about her terror at losing control of her life. She was complex—fierce, tough, independent—but fragile as well. Her physical symptoms were in good control as her oncologist had palliative care training, so my work with Erika was in the psycho-socialspiritual realm. Most of the time she spoke about fighting and defeating the cancer, living a long life, having children, finding a new partner. I supported those dreams. But there were those nodal moments—when I sensed she wanted to talk about the other possibilities, but did not know how. I fumbled along with her, and she was always forgiving of my mistakes. Erika: (out of the blue): Do you believe in life after death? Me (doing my best Freud imitation): What makes you ask that? Erika (catching me, as she always did, yet giving me another chance): Don’t answer a question with a question! I hate that therapist shit. Me (laughing): I am not sure but there have been times when I truly believed the people I loved and had lost were still alive somewhere and talking to me, watching over me, sending signs that they were there. Erika: Who have you lost? Me: My father and my best friend. Erika: And you feel they might still be around? Me: Yes. Erika: Well, if it’s true then I will be there too checking up on you. Me: Thank you, I am very touched. Have you been thinking about dying? Erika (in a very small voice—she usually spoke much differently): Yes. Me: Scared? Erika: Terrified. (long pause—I stop myself from attempting to fill the space). Erika: I don’t want to die—I am too young—yet, I think I will die sooner than I would like. It is less terrifying to think I will still be around after I die. What was your friend like? Did she die of cancer? Me: Yes, ovarian cancer. Truthfully, she was a tough Irish lass too—I think you would like her.
Downloaded by [University of Phoenix] at 04:52 09 February 2015
Chronic Cancer and Palliative Care
79
Erika (smiling): Us tough Irish lasses have to stick together. Will you be with me at the end? Me: Yes. Erika: Will I suffer? Me: I don’t know—physically, we will do everything to make you comfortable. But I can’t speak to what it might be like for you emotionally—there can be tough days. There are tough days now— like today when you said you were terrified. I want you to know that I heard you. We can talk about what might help, but perhaps simply saying it out loud is a start. Erika: You know I don’t want to have that conversation. Me: Well, we are having it, aren’t we? Erika (laughing): I guess we are. But enough for now—let’s talk about my new wig. Most of the conversations I had with Erika about living with chronic cancer and possibly dying from it went like this—periodic, intimate moments that were striking in their honesty, and both poignant and sad for both of us. Yet, I believe these moments, and the secure and loving relationship in which they occurred, helped Erika to live wholeheartedly while managing the onslaught of her cancer. During this time, she completed an advanced directive, wrote a will, took anti-anxiety medication when her fears consumed her, made new friends, worked a part-time job, had a fling with a new man and realized she loved her boyfriend, reconciled with her parents, got a tattoo, took long nature walks despite needing two canes, and planted flowers in her parents’ garden to remind them of her. The last five years were very tough ones—whole brain radiation, chemotherapy, clinical trials, and broken bones. Erika suffered, but her spirit was unbroken. She died relatively peacefully at her parents’ home, surrounded by people who loved her, including me. I am grateful to say that she does check in on me now and then, warning me to avoid "that therapist shit.”
CONCLUSION As clinical social workers, our skills, knowledge, and values place us in a unique position to make a critically important contribution to the work of palliative care. At this point in the evolution of this relatively new field, it is essential that we take ownership of our expertise in this arena and assert what we see and what we know among our interdisciplinary colleagues.
80
S. Gerbino
Patients and families living through chronic, life limiting, and terminal illness should receive the best care possible, the care we all deserve.
Downloaded by [University of Phoenix] at 04:52 09 February 2015
REFERENCES Barnard, D. (2002). Advance care planning is not about “getting it right.” Journal of Palliative Medicine, 5(4), 475–481. Center to Advance Palliative Care. (2012). Get palliative care. Retrieved from http:// www.getpalliativecare.org/ Fobair, P., Stearns, N., Christ, G., Dozier-Hall, D., Newman, N.W., Zabora, J., . . . DeSonier, M. (2009). Historical threads in the development of oncology social work. Journal of Psychosocial Oncology, 27(2), 155–215. Quill, T., & Abernathy, A. (2013). Generalist plus specialist palliative care—Creating a more sustainable model. New England Journal of Medicine, 368, 1173–1175. Temel, J.S., Greer, J.A., Muzikansky, A., Gallagher, E.R., Admane, S., Jackson, V.A., . . . Lynch, T.J. (2010). Early palliative care for patients with metastatic nonsmall-cell lung cancer. New England Journal of Medicine, 363, 733–742. World Health Organization. (2013). WHO definition of palliative care. Who.int/en. Retrieved from http://www.who.int/cancer/palliative/definition/en/
Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20
Chronic Cancer: Bringing Palliative Care Into the Conversation Susan Gerbino PhD LCSW
a
a
Zelda Foster Studies Program in Palliative and End-of-Life Care, New York University Silver School of Social Work , New York , New York , USA Published online: 09 Jan 2014.
Click for updates To cite this article: Susan Gerbino PhD LCSW (2014) Chronic Cancer: Bringing Palliative Care Into the Conversation, Social Work in Health Care, 53:1, 74-80, DOI: 10.1080/00981389.2013.834034 To link to this article: http://dx.doi.org/10.1080/00981389.2013.834034
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
Social Work in Health Care, 53:74–80, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0098-1389 print/1541-034X online DOI: 10.1080/00981389.2013.834034
Chronic Cancer: Bringing Palliative Care Into the Conversation SUSAN GERBINO, PhD, LCSW
Downloaded by [University of Phoenix] at 04:52 09 February 2015
Zelda Foster Studies Program in Palliative and End-of-Life Care, New York University Silver School of Social Work, New York, New York, USA
Palliative care is a treatment model that aims to relieve patient suffering and improve quality of life, and is essential for those living with chronic cancer. However, most palliative care referrals are made as a last resort when all other treatment options have failed. This article argues that social workers have an important role in early palliative care discussions because of their unique skill set. Techniques for early introduction of palliative care are addressed, as are ways for empowering patient advocacy. A case narrative of a young woman with chronic cancer is included as an example of the need for ongoing palliative care conversations. KEYWORDS palliative care, oncology, social work
CHRONIC CANCER: BRINGING PALLIATIVE CARE INTO THE CONVERSATION As the articles in this special issue on Coping with Chronic Cancer discuss, many people are living a long time with cancer and its attendant sequelae. These include making ongoing complex decisions about treatment options; managing short and long-term side effects of surgery, chemotherapy and radiation; dealing with changes in body image and sexual functioning; recalibrating interpersonal relationships; reassessing future plans; coping with assaults to one’s identity and sense of self; and living with the knowledge that cure may no longer be possible.
Received August 1, 2013; accepted August 8, 2013. Address correspondence to Susan Gerbino, PhD, LCSW, Zelda Foster Studies Program in Palliative and End-of-Life Care, New York University Silver School of Social Work, 1 Washington Square North, New York, NY 10003, USA. E-mail: [email protected] 74
Downloaded by [University of Phoenix] at 04:52 09 February 2015
Chronic Cancer and Palliative Care
75
Palliative care is an approach that includes recognition of all of these issues and pledges to relieve suffering and improve quality of life throughout the disease continuum (World Health Organization, 2013). It addresses pain in its totality—physical, psychological, social, spiritual and existential. It is usually provided by an interdisciplinary team, including social work. At its best, palliative care can respectfully accompany people and their loved ones through their journeys as they assert their humanness. It can help them reclaim their full selves and protest the reductive dichotomous identities and qualities the health care system often assigns them—good patient, difficult patient; compliant, non-compliant; in denial, understands diagnosis and prognosis; overly-involved family, distant family. Yet, despite the seeming ideal match between palliative care and chronic cancer, it is most often offered at the end of life and as something for patients and families to choose when “there is nothing else we can do.” Palliative care continues to be confused with hospice care, which is indeed offered at the end of life. Hospice requires physician certification of a prognosis of six months or less and is for people who are no longer receiving curative care. Palliative care includes aggressive symptom management and curative treatments. It can be appropriate at any point, starting at the time of diagnosis. In fact, a recent study found that patients with metastatic non-small-cell lung cancer lived longer when they received an outpatient palliative care consult within 3 months of diagnosis, compared to those who only received the standard medical care (Temel et al., 2010). One way to move palliative care “upstream” is to develop an education model that will create a cadre of generalist palliative care physicians who have the knowledge to offer palliative care whenever appropriate (Quill & Abernathy, 2013). This article argues that social work has an equally important contribution to make in offering palliative care along the illness trajectory. The profession’s ethical commitment to connecting people to and educating them about all possible resources and its expertise in navigating difficult conversations make social work an ideal champion for palliative care.
INTRODUCING PALLIATIVE CARE AS A RESOURCE Jose is a 52-year-old man with curable prostate cancer, who came to me for help when diagnosed. In discussing the available treatment options and services with him and his partner, we discussed palliative care in the context of pain and symptom management. They were prepared for the possibility that mentioning palliative care to their physicians or to family and friends might be met with the statement that palliative care is only needed when a person is going to die. Jose does not need palliative care now and may never need it, but talking about it up front might make it a more palatable option down the road. In addition, hopefully he will educate others, including his physician.
Downloaded by [University of Phoenix] at 04:52 09 February 2015
76
S. Gerbino
Social workers in medical settings have long recognized the needs of people with cancer (Fobair et al., 2009). Social workers intersect with them and their loved ones at many points in the illness trajectory but they are most often referred at the time of initial diagnosis, the first re-occurrence and/or subsequent re-occurrences. Often the framework is crisis intervention, focused on coping, problemsolving and practical help. Social workers help to translate the barrage of medical information and terminology into understandable, everyday language. They provide individual and group counseling, as discussed in this special issue. They also connect patients and families to resources for the myriad of needs that may arise, and provide educational brochures related to their specific cancer and treatments. Yet, palliative care is often missing from the resource list, even when there are existing programs. Introducing palliative care as a concept and resource should be an integral part of social work practice with chronic and life-limiting illness. It should be part of the hospital discharge package along with other more “neutral” services such as Visiting Nurse Services, American Cancer Society, local support groups and financial resources. Including palliative care information would be particularly appropriate for people with initial diagnoses of advanced cancer or rare, complicated types of cancer that will include multiple levels of treatment. It could be a one-page handout with basic information about palliative care, a listing of accessible programs, and Uniform Resource Locator (URL) links to user-friendly palliative care websites such as Get Palliative Care (Center to Advance Palliative Care, 2012). Social workers in all settings need to be educated about palliative care. In my academic role, I am regularly consulted by colleagues, students, and alumni who are working with people with cancer or whose personal lives have been touched by cancer. They often have no idea what palliative care is, despite being associated with a social work school that has three very visible palliative care educational programs. They are working with people with cancer in homeless shelters, in their private practices, in schools and college counseling centers, in senior programs—in short, in any field of social work practice. Even knowing the bare minimum about palliative care and understanding its place throughout the illness trajectory would make an enormous difference.
BRINGING PALLIATIVE CARE INTO THE CONVERSATION: FORKS IN THE ROAD In his article about advance care planning, Barnard (2002) speaks of “nodal moments” between physicians and patients (pp. 478–479). This is when the physician realizes there is a shift in the balance between health and decline and there is an opportunity for a discussion about the patient’s goals and
Downloaded by [University of Phoenix] at 04:52 09 February 2015
Chronic Cancer and Palliative Care
77
hopes. These moments often occur well before the person is at the end of life. Social work clinicians experience these moments as well. Barnard believes the physician may realize it before the patient, but I would argue that sometimes patients get there first. When they do, they throw out small feelers to us—tentatively, casually, cautiously—to test us. If we have the insight to recognize the fork in the road and to follow it, we will have entered a dialogue about palliative care. Palliative care is not one conversation— rather, it is a series of small, intimate talks—building rapport, establishing trust, listening with our hearts. When we realize we’ve missed a chance, we must have the courage to go back and say: “I have been thinking about our conversation, and I think I missed something—I think you were trying to tell me something—I’m sorry—can we go back to it?” Erika∗∗ was 27 years old and a two-year survivor of metastatic breast cancer when she was referred to me privately by her oncologist, who described her as difficult, demanding and “in denial.” I had worked with this oncologist many times in the past and was surprised by her characterization of Erika, as she rarely spoke about patients that way. Erika was also homeless, living out of her car, having fallen behind on her rent. She lost her job because she had missed too many days of work and she refused to move back home with her parents. Erika described herself as a “tough Irish lass” who hated organized religion but was deeply spiritual. She had an on and off again boyfriend who had stuck with her through all the ups and downs of her illness. They were not together when I first met her because she worried she was staying with him because of her illness and how she looked. The first time I saw her she was wearing a bright red wig and purple suede boots. She was rail thin with the telltale signs of steroids—a large moon face that she promptly told me she detested. She said the wig and the boots made her feel sexy and desirable despite the ravages of chemotherapy and radiation. When I asked how I could be helpful to her, she said she needed all her health care providers to “love her.” I said I couldn’t promise that but joked that she was off to a good start as I loved the wig and the boots. She laughed and I knew we had established a good connection. I worked with Erika for 7 years until her death. During that time I did grow to love her. She taught me a tremendous amount about living with chronic cancer, and about living in general. There were many forks in the road in my work with Erika. She had an indomitable spirit and an optimism that could easily be mistaken for denial. After a CT scan revealed brain metastases, she left a message on my voice mail saying she had “good” news—there were “only 10 spots.” She knew that ∗∗
While many of the details of Erika’s life have been changed to protect her confidentiality, she specifically requested that if I wrote about her, I would not change her name—"Erika with a K." This article is dedicated to her memory.
78
S. Gerbino
Downloaded by [University of Phoenix] at 04:52 09 February 2015
she could die but talking about it explicitly was mostly off limits. Nonetheless, we spoke early and often about her terror at losing control of her life. She was complex—fierce, tough, independent—but fragile as well. Her physical symptoms were in good control as her oncologist had palliative care training, so my work with Erika was in the psycho-socialspiritual realm. Most of the time she spoke about fighting and defeating the cancer, living a long life, having children, finding a new partner. I supported those dreams. But there were those nodal moments—when I sensed she wanted to talk about the other possibilities, but did not know how. I fumbled along with her, and she was always forgiving of my mistakes. Erika: (out of the blue): Do you believe in life after death? Me (doing my best Freud imitation): What makes you ask that? Erika (catching me, as she always did, yet giving me another chance): Don’t answer a question with a question! I hate that therapist shit. Me (laughing): I am not sure but there have been times when I truly believed the people I loved and had lost were still alive somewhere and talking to me, watching over me, sending signs that they were there. Erika: Who have you lost? Me: My father and my best friend. Erika: And you feel they might still be around? Me: Yes. Erika: Well, if it’s true then I will be there too checking up on you. Me: Thank you, I am very touched. Have you been thinking about dying? Erika (in a very small voice—she usually spoke much differently): Yes. Me: Scared? Erika: Terrified. (long pause—I stop myself from attempting to fill the space). Erika: I don’t want to die—I am too young—yet, I think I will die sooner than I would like. It is less terrifying to think I will still be around after I die. What was your friend like? Did she die of cancer? Me: Yes, ovarian cancer. Truthfully, she was a tough Irish lass too—I think you would like her.
Downloaded by [University of Phoenix] at 04:52 09 February 2015
Chronic Cancer and Palliative Care
79
Erika (smiling): Us tough Irish lasses have to stick together. Will you be with me at the end? Me: Yes. Erika: Will I suffer? Me: I don’t know—physically, we will do everything to make you comfortable. But I can’t speak to what it might be like for you emotionally—there can be tough days. There are tough days now— like today when you said you were terrified. I want you to know that I heard you. We can talk about what might help, but perhaps simply saying it out loud is a start. Erika: You know I don’t want to have that conversation. Me: Well, we are having it, aren’t we? Erika (laughing): I guess we are. But enough for now—let’s talk about my new wig. Most of the conversations I had with Erika about living with chronic cancer and possibly dying from it went like this—periodic, intimate moments that were striking in their honesty, and both poignant and sad for both of us. Yet, I believe these moments, and the secure and loving relationship in which they occurred, helped Erika to live wholeheartedly while managing the onslaught of her cancer. During this time, she completed an advanced directive, wrote a will, took anti-anxiety medication when her fears consumed her, made new friends, worked a part-time job, had a fling with a new man and realized she loved her boyfriend, reconciled with her parents, got a tattoo, took long nature walks despite needing two canes, and planted flowers in her parents’ garden to remind them of her. The last five years were very tough ones—whole brain radiation, chemotherapy, clinical trials, and broken bones. Erika suffered, but her spirit was unbroken. She died relatively peacefully at her parents’ home, surrounded by people who loved her, including me. I am grateful to say that she does check in on me now and then, warning me to avoid "that therapist shit.”
CONCLUSION As clinical social workers, our skills, knowledge, and values place us in a unique position to make a critically important contribution to the work of palliative care. At this point in the evolution of this relatively new field, it is essential that we take ownership of our expertise in this arena and assert what we see and what we know among our interdisciplinary colleagues.
80
S. Gerbino
Patients and families living through chronic, life limiting, and terminal illness should receive the best care possible, the care we all deserve.
Downloaded by [University of Phoenix] at 04:52 09 February 2015
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