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Hematology-Oncology Department, Massachusetts General Hospital Cancer Center, Boston, Massachusetts, USA
Correspondence: Bruce A. Chabner, M.D., Hematology-Oncology Department, Massachusetts General Hospital Cancer Center, Cox Building, Room 640, 100 Blossom Street, Boston, Massachusetts 02114-2617, USA. Telephone: 617-724-3200; Fax: 617-724-3166; e-mail: bchabner{at}partners.org
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ABSTRACT |
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In this article, the case presentation and verbatim dialogue from the rounds are discussed with an emphasis on staff psychosocial issues. The case presented was of a 32-year-old man, who developed small cell osteosarcoma and was treated at MGH. He died after undergoing multiple courses of relatively ineffective chemotherapy. The case is made all the more poignant because of the pleasures, hopes, and stresses of having a child late in the course of his illness. Staff identified closely, both with him and his family, and their concern for him brought joy and meaning to their work, yet this complicated their ability to deal with his impending death. They felt that his unwillingness to admit defeat prevented them from saying goodbye to someone whom they loved and admired. Despite this, staff recognized that, ultimately, the patient's emotional needs and wishes had to be respected as a first priority and that constructive closure can be worked toward, if not achieved. In such situations, it is vital to have a colleague support system and a forum for discussion of such issues in order to defuse distress and reassure staff that they are doing all that can be done as professionals and caregivers.
Key Words. Cancer • Psychosocial • Drug therapy • Caregivers • Chemotherapy • Surgery • Palliative care
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PRESENTATION OF CASE |
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In March of 1994, a 32-year-old previously healthy man presented to MGH with a 6-week history of back and left leg pain. His past medical history was unremarkable. An MRI of the spine showed a destructive lesion in the left sacrum and on bone scan there was uptake of tracer in the area of the right thigh, in the left rib, and T6. CT scan revealed calcifications in a right thigh mass. Needle biopsies showed small cell osteosarcoma in both sacrum and thigh. The tumor responded well to the initial chemotherapy. However, the patient had persistent disease at T6, and bone scans quickly revealed metastatic lesions in the right ilium, femur, and L1. Multiple recurrences at T6 threatened his spinal cord. Despite radiotherapy and treatment with all standard agents, his cancer metastasized to his lungs and adrenals.
The patient's clinical course was long and arduous, yet he and his wife never gave up hope. Over 3 years, he was treated with a series of standard and experimental agents that produced brief responses. He had numerous courses of radiation therapy and multiple tumor resections of the lesion in his lumbar spine, each procedure carrying with it an increased risk of paralysis.
At the time of his diagnosis, the patient was an active seaman and was married to an oncology nurse. He and his wife were very close and worked as a team throughout his illness. His wife was always proactive, well informed and actively involved in all of his treatments and his decisions. His strength and fighting spirit were unyielding. He rejected any purely palliative approach and continued to request any treatment that might bring him improved lower limb function. These multiple courses of therapy, and his incredible spirit, allowed him to live years beyond his initial prognosis. As a result, he enjoyed valuable time with his wife and lived to experience the birth and first few months of his son's life. His case was presented at the Schwartz Center Rounds 3 months before his death at home.
| I think what made treating him difficult, for me, was that I had to really struggle to hold onto the medical reality, because, at times, I thought there was hope.
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DIALOGUE |
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Nurse: It seemed that all he and his wife ever wanted was to lead a normal life. Despite his terminal illness, they made a conscious decision to start a family. During this time, his emotions ranged from pure excitement, after successful surgery, to sadness and tears when he reflected on the reality that he would not be able to raise his son. I saw the birth of his son, and I could just feel the joy in his voice at how proud he was. He was overjoyed to have witnessed his birth, but, at the same time, you could sense sadness that he would not be able to be a part of his son's future.
Identifying with the Patient
Nurse: After his wife got pregnant, I think we all lost sight of the fact that he was sick. We all started to spend a lot of time talking about the child and how exciting it was. We all went through the whole process with them—fertility treatments, pregnancy, and birth. I think what made treating him difficult, for me, was that I had to really struggle to hold onto the medical reality, because, at times, I thought there was hope. I think what is making it really hard for all of us right now, as caregivers, is that we are all realizing together that this is not going to work. He is not going to get better.
Nurse: I'm not sure what you would call "reality," because we may know a medical reality, but he and his wife have a spiritual reality that is incredibly strong. We, as caregivers, base most of our decision-making on our medical knowledge. As an oncology nurse, his wife does have a complete medical knowledge, but she also has a spiritual knowledge base that is much more vast and in-depth than mine.
Medical Oncologist: I think one of the hard questions here is: What do we offer him? Even though the prospects are bleak, we have to offer him something. It is hard not to. One problem I anticipate is that, at a certain point, he is going to become paralyzed. There are only so many resections that can be done. One of these days, the neurosurgeons are going to say, "This really is impossible. We cannot keep doing this."
Psychiatrist: Facing paraplegia is a scary prospect for the patient, but it is a reality. He is focused on having excellent function of his legs, and he desperately wants to take care of his son and not be an extra burden to his wife. Confronting the prospect of paraplegia is really tough for him. He wants to keep living his life the way he always has, but he knows the reality. Yesterday, he said, "It is only a matter of time before I become paralyzed." Yet he has not given up hope. He is extraordinary in that he is not really a massive denier. He is facing his illness with his eyes open, but he keeps pushing. But I can sense the reservation in his wife about embarking on yet another chemotherapeutic trial. The surgeons must have the same hesitation as they consider more surgery. But everyone is taking their cues from him. It is hard to know when to stop treatment, especially when he keeps insisting on more.
He and his wife went to Lourdes and prayed that they would be able to conceive a child. Not long afterward, despite poor odds, his wife became pregnant. I think he viewed her pregnancy as a miracle, and he felt okay with asking God for a miracle. But he did not understand "why God would not give (him) a miracle this time." He is incredible in that he is fully aware of the odds, but he is still able to have faith and believe in miracles.
At this point, I think his wife is worried about any treatment that would hurt him more than it would help him. Recently, he confessed to me, "I hate being in the hospital." Feeling similarly, his wife told him, "I do not want to make it necessary for you to be in the hospital all the time. It would be nice for you to be at home." I sense that she is worried now about more aggressive regimens that will only make his life more difficult.
Nurse: I think the baby adds a whole new element to this case. Until now, it has always just been him and his wife and their extended family, but now that the baby is in the picture, I think his wife is incredibly torn. She wants to be at the hospital with her husband, but she also wants to be home with her 3-week-old son. It is an incredible struggle for her. I think quality of life is becoming a more important issue to her. She is realizing that maybe it is more important that he be at home with his family. She wants him to be able to bond with his child. The other day, she brought Jr. to the hospital, a few hours before surgery. He was lying there with his little baby sitting next to him. I could tell that it was an incredibly important moment for him to have his child there. I think the baby has brought in a whole new level of decision-making for them together as a couple. They need to decide where and how they want to spend their time as a family.
| I think it is a difficult responsibility for her to say to him, "No, this is it. Although I want you to live, it is not worth it to go through all of this. I want you home." I think having all the medical knowledge puts her in a vulnerable position. She has to play the conflicting roles of nurse, wife, and mother.
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Doctor: Now that the baby is in the picture, his wife is acting less as an oncology nurse and patient advocate and more as a mother and a wife. She is now looking to us caregivers in a different way, not just for technical decisions, but for emotional and practical advice on what to do as a mother and a wife. She has never confided in us like this until now.
The Dilemma of Transition to Terminal Illness
Social Worker: I think being an oncology nurse puts his wife in an uncomfortable situation. He looks to her for answers in terms of chemotherapy and medical advice. I think it is a difficult responsibility for her to say to him, "No, this is it. Although I want you to live, it is not worth it to go through all of this. I want you home." I think having all the medical knowledge puts her in a vulnerable position. She has to play the conflicting roles of nurse, wife, and mother.
Doctor: When patients count on miracles, the saying of St. Ignatius offers practical advice: "Pray as if everything depends on God, and work as if everything depends on you." We all try to find the best treatment that we can, but there is really only so much that we can do.
Doctor: I think a big part of what we do as oncologists is offer hope to patients with new therapies. Right now, if we do not give him any chemotherapy, he will probably live about another 6 months. If we do give him chemotherapy and it is effective, he may gain an extra few months. But, at this point, to cure him, we literally need a miracle. So a cure is not something that I can really dangle in front of him. A drug that works may give him a few extra months, but if the drug is very toxic, it is clearly going to take away quality from the last months of his life. So now we need to ask, "Are there any drugs that are not so terribly toxic, but with which we might get lucky?" We have talked about putting him on antiangiogenic drugs. So he may start a new trial. But we will still have to face the neurosurgeons when he begins to have difficulty walking again. "A sixth surgery?" they will say. "...Going down to the draw. He will probably push us until he comes off the table paralyzed."
Psychiatrist: I would like to address the question of whether all of these aggressive treatments and procedures are distracting from the dying process. We would be failing him if we cheated him of his own death. We need to be conscious of the whole process.
In addition to being a merchant seaman, he is also a master at reconstructing model cars. They are really works of art. He is in the process of reconstructing a car, and it is a big disappointment to him that he is unlikely to complete it.
Yesterday he told me, "Sometimes, I do not want to live...No, I cannot say that. There is never a time I do not want to live. I do not want to live like this." So I replied, "Okay, who are you anyway? When is it that you as a person cease to exist? What do you have to offer people that is taken away by your illness? Does being ill or paralyzed make you cease to be an admirable person? Should I then not stop in to talk to you anymore?" He is a man of remarkable depth. He thought about what I said and then replied, "I don't understand why this is all happening. I don't feel like I am completely worthless, but I do feel like I am much less valuable, and that I am a burden." He continued, "I am not really sure what to do about death or facing death." So I said, "Well, let's take the worst-case scenario. If you only had 1 month to live, what would you do?" He replied, "Well, that is kind of hard." So I said, "Okay, let's say that God appears to you now and says, ‘Okay, at midnight tonight you're out of here.' What would you do?" He replied, "I would spend as much time as I could with my wife and tell her how much she has meant to me and how much I love her." And I said, "That is really the lesson that facing death teaches you." When faced with the question, "what would you do if today were your last," you find out what it is that you ought to do right now.
| If we can reveal to patients these feelings of gratitude, then we will not have to worry about saying goodbye.
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This was a heavy conversation because he admitted to me that with each step of his illness, he has lost some part of his identity. The way he viewed and defined himself was being destroyed. I told him, "You are a pretty powerful guy. Even if we bound you and tied you up, you have incredible power over people. You have to realize that you still have that power, and the question you need to answer is how are you going to use this power?"
I have heard caregivers voicing concern over how to make the transition in his care from curative to palliative. I am uncomfortable with the use of the term "transition" because I never think of it in that way. I never think of a patient as dying, because when we are treating them, they are always alive. Death is a minor problem. What we do until we get there is the major problem we ought to be working on.
The patients we treat are all alive, and they need to decide what they want to do with their remaining life. So if they want extensive chemotherapy, we should give it to them. My only concern would be that the chemotherapy could detract from the quality of their life. But as long as caregivers make their reservations clear, patients should be able to make their own decisions.
Doctor: Sometimes in these situations, a conflict arises within the team as to when treatment should be continued and when it should be terminated. Sometimes the physician or the nurse feels differently about whether treatment is necessary. One of the things that strikes me about this case is how united the caregivers seem to be about treatment decisions. Inevitably, we all draw lines in different places. Has this become an issue in this case, and how have caretakers managed to work as a team to decide when to continue or cease treatment?
Doctor: There have only been a few minor conflicts among caregivers. The one major disagreement has been whether or not to perform further surgery. Some of the neurosurgeons involved with his care have said, "This is really the last time that I am going to do this." But we have literally just found another neurosurgeon who was willing.
Doctor: Have the surgeries helped him?
Doctor: Yes, definitely.
Doctor: So, why not do them?
Doctor: Well, it is just that the surgeries are coming closer and closer together. You cannot do surgery every day. You need time to recuperate and heal. I think one of these times the neurosurgeon is going to have him paralyzed on the table or he will die on the table. One of these two outcomes is probably the only way to force us to stop doing the surgery.
Saying Goodbye
Nurse: I know he is close to the end, and I want to say goodbye. But I do not really know when or how to say goodbye.
Psychiatrist: Often when asked what they would do if someone they cared about only had one day to live, people respond, "I don't know how to say goodbye." What does it mean to say goodbye? When somebody dies suddenly, often people close to that person think, "Oh, my God, I wish I had told them X or Y." Usually they wish they had told that person how much they meant to them. Telling a person we love them and how much they mean, and have meant, to us, makes saying goodbye irrelevant. Moreover, we should be telling loved ones these things, regularly.
When caregivers say something to him like, "I can't help but tell you, I have been filled with admiration for you in the way in which you have dealt with this, your courage, your patience, your kind treatment of all of your caregivers...," they are saying goodbye to him in their own way by telling him what he has meant to them. We want our patients to know the impact that they have had on our lives and why we are grateful that we knew them and why we will never forget them. If we can reveal to patients these feelings of gratitude, then we will not have to worry about saying goodbye.
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DISCUSSION |
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Staff Discomfort with a Patient's Insistence to Continue Aggressive Therapy
During the rounds, several caregivers consistently voiced misgivings or ambivalence about the patient's desire to undergo high-risk treatment, with a slim prospect of benefit. The patient sought relief from impending spinal cord impingement through multiple surgical procedures that some physicians felt were unacceptably risky with little chance of proving effective. Despite the physicians' concerns, the patient did appear to forestall the onset of paralysis. Similarly, his insistence on participating in relatively unsuccessful chemotherapy caused his physicians and caregivers to question whether these decisions would lead to impairment of his quality of life during the terminal phase of his illness. Because every terminal cancer patient approaches the reality of dying differently, a myriad of conflicting attitudes and opinions about treatment decisions arises among staff and between staff and patients [1].
This case illustrates the importance of balancing patient desires and medical judgment in determining the path that is taken during the terminal phase of a patient's illness. Although this patient was aware of the palliative goals, he hoped for a miracle, and his desire for aggressive therapy and the resulting high-risk treatments provided hope for him against the certain knowledge that the tumor would eventually prove fatal. Recent studies have clearly shown that "active treatment" is a source of hope, and concluded that patients with advanced, incurable tumors often desire more aggressive treatment than physicians are willing to provide [2], and have greater enthusiasm for continuing treatment than do their physicians [3]. Studies have reported that terminal cancer patients who pursued aggressive treatment were happy to "have another chance at life" [4], even though some were very unlikely to live any longer [5]. Treatment with subsequent lines of chemotherapy does follow the law of diminishing returns, but further treatment can be valuable, as evidenced by the recent report that second-line chemotherapy (irinotecan) for 5-fluorouracil refractory colon cancer improves both quality of life and survival [6,7]. This conflict between a dying patient's desire to continue treatment and the caregivers' knowledge of the low degree or probability of benefit from such treatment is a source of significant emotional turmoil for those administering the treatment. Despite this conflict, the patient's wishes for continued therapy, if consistent with reasonable medical practice, must remain primary in the decision-making process [8–10]. Consequently, as in this case, health care professionals may feel helpless and frustrated when standard medical technology has been exhausted, yet their patient still insists on continuing treatment.
Closure
During the rounds, staff members expressed concern about their need to say goodbye to a patient whom they admired and loved. In the past, most of the attention has been focused on the patient's response to terminal illness; however, as Meares observed, "In recent years, increasing importance has been given to the role of the physician and his colleagues, not only in preserving life, but in easing the process of dying. Accumulating evidence suggests this is not solely for the comfort of the dying, but also for the health and well-being of the survivors" [11]. It is apparent that helping caregivers resolve end-of-life issues, such as saying goodbye to a loved patient, not only helps relieve their own stress, but also improves the care that they can give to patients. One way in which caregivers can attend to issues of closure without challenging a patient's belief that he or she may be cured was expressed eloquently by the psychiatrist at the rounds who encouraged a very active communication—that we admire how patients deal with their illness, and that we value the relationship—essentially, that the patient means a lot to us. While such conversations may seem painful to initiate, suggesting the inevitability of future loss, this kind of compassion and solidarity may offer a sense of confidence and healing for both parties. Although the patient's wish to continue therapy may conflict with the staff's desire to start the process of saying goodbye, ultimately the patient's emotional needs must be respected, and caregivers may not have an opportunity for completely constructive or satisfying closure. In this case, the group discussion and the opportunity to express frustrations and disappointments among colleagues, in the Schwartz Center Rounds, provided a needed emotional catharsis for many of the staff.
Identifying with a Patient
Throughout this discussion, caregivers—mostly young, vigorous, and articulate people—expressed, both implicitly and explicitly, their strong identification with the patient and his wife, and their personal experience of the stresses and joys of his last months. While they clearly derived a great deal of pleasure from their interactions with him and his family, it came at a significant price during the terminal stage of his illness, when few emotional boundaries existed between patient and staff. Again, colleague support and opportunities for discussion of these difficult emotional issues seem to have offered relief from the stresses caused by his impending death, and reassured staff that they were doing all that could be done as professionals and compassionate caregivers [12–14].
| Staff recognized that they needed to be sensitive to the wishes of a patient who did not want to give up life and function.
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CONCLUSION |
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The Schwartz Center Rounds create a valuable forum in which caregivers can express their concerns and feelings. Such a forum allows staff to become better practiced caregivers by facilitating insight about themselves and providing an opportunity and space in which to consider their own emotions and responses.
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FOOTNOTES |
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ADDITIONAL READING |
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Buckman R. Talking to patients about cancer. BMJ 1996;313:699–700.
Coates A. Quality of life and supportive care. Support Care Center 1997;5:435–438.
De Conno F, Caraceni A, Groff L et al. Effect of home care on the place of death of advanced cancer patients. Eur J Cancer 1996;32A:1142–1147.[CrossRef]
Meredith C, Symonds P, Webster L et al. Information needs of cancer patients in the west of Scotland. BMJ 1996;313:724–726.
Ramirez A, Graham J. Mental health of hospital consultants: the effects of stress and satisfaction at work. Lancet 1996;347:724–728.[CrossRef][Medline]
Richards M, Ramirez A. Quality of life: the main outcome measure of palliative care. Palliat Med 1997;11:89–92.
Simpson M, Buckman R, Stewart M et al. Doctor-patient communication: the Toronto consensus statement. BMJ 1991;303:1385–1387.
Slevin M. Quality of life: philosophical questions or clinical reality? BMJ 1992;305:466–467.
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REFERENCES |
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Related articles in The Oncologist:
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