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Understanding the goals of care in end-of-life decision making: A committee opinion at the bedside
I-
Understanding the Goals of Care in End-of-Life Decision Making: A Committee Opinion at the Bedside Elena A. Gates, MD Department of Obstetrics and Gynecology U.C. San Francisco School of Medicine San Francisco, California
hortly after I received my copy of the ACOG Committee on Ethics Opinion titled End-of-Life Decision Making: Understanding the Goals of Care, I started a month as attending physician on the gynecology service at the medical center where I work. My first morning on the service, I was told about a young woman just transferred from the medicine service. She had been admitted with fatigue, severe anemia, and lower extremity edema. On physical exam she had a large pelvic mass. Magnetic resonance imaging had revealed a huge lesion, filling both the uterine corpus and the vagina. Pelvic and para-aortic node involvement were obvious. Bilateral hydroureteronephrosis was present. Biopsy of the vaginal mass showed a poorly differentiated adenosquamous carcinoma. At my first meeting with her I was faced with the task of building her trust in me while simultaneously bearing very bad news. She was quite unprepared for a diagnosis of advanced and life-threatening cancer. She had been having irregular bleeding for several months but otherwise denied symptoms. It was clear that it would take some time for her to come to grips with her diagnosis. At the same time, her health status was precarious. Her renal function was deteriorating. Her risk of thromboembolism and of catastrophic hemorrhage was significant. I am a physician who has always advocated the active participation of patients in planning their own care, convinced that one’s overall well-being is strengthened by the sense of empowerment that comes with making decisions about one’s own health affairs. Struggling through challenging decisions with my patients is a process that I generally have found rewarding. The task of speaking with this patient, however, seemed daunting. In speaking with her I had several tasks to achieve rather quickly. I needed to inform her of her diagnosis, discuss its implications, and get a sense of her wishes as far as the use of life-sustaining treatment in the setting of such advanced disease. I also wanted her to identify for me the individual whom I could turn to as a proxy decision maker should the need arise.
S
302
WOMEN’S
HEALTH
ISSUES VOL.
6, NO. 5 SEPTEMBER/OCTOBER
1996
0 1996 by The Jacobs Institute of Women’s Health Published by Elsevier Science Inc. 1049.3867/96/$15.00 PII SlO49-3867(96)00021-7
It was at this point that I found End nf Life Decision Making particularly helpful. Discussions of the use of life-sustaining medical treatment and end-oflife decisions have tended, until recently, to focus on concepts such as “withdrawing,” “stopping,” and “withholding.“ This construction seemed too negative for an initial discussion with a patient who had not yet grasped her diagnosis but who faced the likelihood of life-threatening complications of her disease. The analysis provided in the Committee Opinion reframed the discussion in a way that was valuable in trying to maintain a positive and caring approach in presenting a diagnosis, treatment choices, and some sense of what was in store, while also addressing critical questions about the use of lifesustaining treatment and technology. The document also helped me to understand several other ways that my patient might benefit from examining the goals of care. As the document points out, “Explicit discussion about the goals of care is important for a number of reasons. First, assumptions about the objectives of care inevitably shape perceptions about the appropriate course of treatment. Second, these objectives may be understood differently by the patient and her caregivers. Third, unarticulated commitments to certain goals may lead to misunderstanding and conflict. Fourth, the goals of care may evolve and change in response to clinical or other factors.” As a sense of her own goals for treatment evolved during the course of our discussions, I talked with her about the importance of sharing these goals and exploring them with her other physicians, her radiation oncologist, and her gynecologic oncologist. I encouraged her to try to clarify with them just what they were hoping to achieve by the treatment they were offering. I urged her to explore with them the likelihood that each potential treatment would help her to achieve the goals that she identified-whether that be prolongation of life, control of bleeding, or relief from pain. In subsequent weeks, I have found that a focus on goals of care has influenced my approach to counseling all of my patients about their therapeutic options. In the past, I would generally build my discussion with a patient around an explanation of her diagnosis and the possible treatments that could be employed. I now find it much more effective to try to help a woman identify precisely what aspects of her condition are having the most negative impact on her life and to identify what she is hoping to achieve through medical care. We can then discuss treatment options in terms of her own goals. I have used this approach in counseling women about estrogen replacement therapy and in discussing the treatment of symptomatic uterine myomata. It is especially valuable in the setting of the imminent delivery of a fetus of borderline viability. During several years of service on the Committee on Ethics of ACOG, I struggled with my colleagues to create documents that would be instructive in terms of ethical issues but that would also be valuable aids in clinical care. It is gratifying for me to appreciate now, from the consumer’s side, just how useful a Committee Opinion can be.
COMMENTARY
303
Understanding the Goals of Care in End-of-Life Decision Making: A Committee Opinion at the Bedside Elena A. Gates, MD Department of Obstetrics and Gynecology U.C. San Francisco School of Medicine San Francisco, California
hortly after I received my copy of the ACOG Committee on Ethics Opinion titled End-of-Life Decision Making: Understanding the Goals of Care, I started a month as attending physician on the gynecology service at the medical center where I work. My first morning on the service, I was told about a young woman just transferred from the medicine service. She had been admitted with fatigue, severe anemia, and lower extremity edema. On physical exam she had a large pelvic mass. Magnetic resonance imaging had revealed a huge lesion, filling both the uterine corpus and the vagina. Pelvic and para-aortic node involvement were obvious. Bilateral hydroureteronephrosis was present. Biopsy of the vaginal mass showed a poorly differentiated adenosquamous carcinoma. At my first meeting with her I was faced with the task of building her trust in me while simultaneously bearing very bad news. She was quite unprepared for a diagnosis of advanced and life-threatening cancer. She had been having irregular bleeding for several months but otherwise denied symptoms. It was clear that it would take some time for her to come to grips with her diagnosis. At the same time, her health status was precarious. Her renal function was deteriorating. Her risk of thromboembolism and of catastrophic hemorrhage was significant. I am a physician who has always advocated the active participation of patients in planning their own care, convinced that one’s overall well-being is strengthened by the sense of empowerment that comes with making decisions about one’s own health affairs. Struggling through challenging decisions with my patients is a process that I generally have found rewarding. The task of speaking with this patient, however, seemed daunting. In speaking with her I had several tasks to achieve rather quickly. I needed to inform her of her diagnosis, discuss its implications, and get a sense of her wishes as far as the use of life-sustaining treatment in the setting of such advanced disease. I also wanted her to identify for me the individual whom I could turn to as a proxy decision maker should the need arise.
S
302
WOMEN’S
HEALTH
ISSUES VOL.
6, NO. 5 SEPTEMBER/OCTOBER
1996
0 1996 by The Jacobs Institute of Women’s Health Published by Elsevier Science Inc. 1049.3867/96/$15.00 PII SlO49-3867(96)00021-7
It was at this point that I found End nf Life Decision Making particularly helpful. Discussions of the use of life-sustaining medical treatment and end-oflife decisions have tended, until recently, to focus on concepts such as “withdrawing,” “stopping,” and “withholding.“ This construction seemed too negative for an initial discussion with a patient who had not yet grasped her diagnosis but who faced the likelihood of life-threatening complications of her disease. The analysis provided in the Committee Opinion reframed the discussion in a way that was valuable in trying to maintain a positive and caring approach in presenting a diagnosis, treatment choices, and some sense of what was in store, while also addressing critical questions about the use of lifesustaining treatment and technology. The document also helped me to understand several other ways that my patient might benefit from examining the goals of care. As the document points out, “Explicit discussion about the goals of care is important for a number of reasons. First, assumptions about the objectives of care inevitably shape perceptions about the appropriate course of treatment. Second, these objectives may be understood differently by the patient and her caregivers. Third, unarticulated commitments to certain goals may lead to misunderstanding and conflict. Fourth, the goals of care may evolve and change in response to clinical or other factors.” As a sense of her own goals for treatment evolved during the course of our discussions, I talked with her about the importance of sharing these goals and exploring them with her other physicians, her radiation oncologist, and her gynecologic oncologist. I encouraged her to try to clarify with them just what they were hoping to achieve by the treatment they were offering. I urged her to explore with them the likelihood that each potential treatment would help her to achieve the goals that she identified-whether that be prolongation of life, control of bleeding, or relief from pain. In subsequent weeks, I have found that a focus on goals of care has influenced my approach to counseling all of my patients about their therapeutic options. In the past, I would generally build my discussion with a patient around an explanation of her diagnosis and the possible treatments that could be employed. I now find it much more effective to try to help a woman identify precisely what aspects of her condition are having the most negative impact on her life and to identify what she is hoping to achieve through medical care. We can then discuss treatment options in terms of her own goals. I have used this approach in counseling women about estrogen replacement therapy and in discussing the treatment of symptomatic uterine myomata. It is especially valuable in the setting of the imminent delivery of a fetus of borderline viability. During several years of service on the Committee on Ethics of ACOG, I struggled with my colleagues to create documents that would be instructive in terms of ethical issues but that would also be valuable aids in clinical care. It is gratifying for me to appreciate now, from the consumer’s side, just how useful a Committee Opinion can be.
COMMENTARY
303