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Witneses to suffering: Nursing knowledge, voice, and vision
menE of its actual worth?? 4 -At the same time, other scholars have demon strated that nursing knowledge may be embedded in clinical~narratives~ rather than inmore “mainstrearn~’ forms of knowledge expression5~ Both schools of tho&t have dvsn~& the development of nursing’s voice. To continue this development of nursing’s voice, it is crucial that we talk freely about urses encounter suffering in a feet on patients, nurses, and the larger what we know, including what we wide variety of forms across society-is that nurses work within a know about suffering, biomedical system that tends to obDi&&n of sx.&etig in the scholdiverse practice settings. Pain, mental distress, bereavement, poverty, even scure human suffering. As Eric Cassell~, arly nursing literature may be gradumedical treatment can underlie a per- a physician who reflected about this ally increasing, but it remains scarce and infrequent in contrast to the person’s sul;fering; indeed, these are con- problem in the context of medical bj vasiveness of sui%ering in clinie~l pracditions nurses deal with every day. practice, argued, biomedicine Despite this familiarity, it is our ob- adopted the notion that mind and body ’ tioe.8 As J&&y9 noted, a great dtil of servation that nurses speak little about are separate entities. A logical conse- theoretical work and research-needs to be done, And, as Morse and J6hnsotii0 quenceof this perspective is medicine’s the suffering they witness in their argued, the natumof suffeying~experifocus on the body. Thus physical disclinical work, especially to people who ences have not yet been .&a&y detress is viewed as more objective, real, are not also nurses. This observation crystallized in a discussion one of us and important than other kinds of dis- scribed. Still, this immature s&olarly had with a former student who had tress.’ Distress that is not obviously been working with cancer patients in rooted in a physical explanation or dithe year since her graduation. She agnosis is obscured, when not comloved her job and related several poi- pletely dismissed. But suffering is an gnant and tragic stories about her pa- experience of the whole person, and tients. At the end, she said, “I’m glad I people suffer fr6m a variety of lossesor could tell you this. When I try to talk threats to personal identity whether or about it at home, no one seems able to not there is any bodily harm2 One characteristic of nursing’s delisten. It ruins our dinner conversavelopment over the past decade is the tion.” discovery of its voice-the ability and Doubtlessly, there are many reasons for this. Suffering is hard to talk about willingness to express what nurses col- discourse has ic,tiefzrified three imperr lectively know and understand about tant e4ements of p&ier;lt su&feringihrat and hear about. One reason- which must be critically examined for its ef- the nature of nursing practice. For in- need f%n+therel&e@tion. First, su&rstance, feminist thinkers have noted ing is linked inextricably to issues of mean&g ~-~~~~ of l$e.i1-i4 Se%that the- ‘inv work’ ofe4tr@is-a NWRS CkrTlQQK !%‘4;4&i%fbt. ond, des@ibing the contex%ual or enviconsequence e syae@c dwaluby hkmby-Ytw Beak, Inc. .oo +o 33/1/53#397 ation of women’s’ work and not a judg- ronmental influences on the experi-
ence of suffering; are of paramount importance in understanding and interpreting the Iconstruction of any given individual’s suffering.*1 15-17Finally, the suffering of an individual deeply affects those who care for that person.iO~17,l8
Suffering is hnked inextricably to issues of meshing and quality of life. NARRATIVES OF SUFFERING That nurses in practice know and understand a great deal about suffering was made clear to us during a study we did several years ago concerning the language of nurdng practice. In this phenomenologic study, we interviewed 26 nurses who had returned for graduate study in nursing about what suffering, caring, and coping meant to them within the context of their clinical practices. Our original analysis of these data relied on a typical qualitative technique to reduce and abstract textual data across individual informants in order to derive themes that applied to the data as a whole. First, we coded the data, breaking the texts down into verbatim statements that could be grouped across participants according to observed similarities. Each group of statements then was labeled as a category and rules for inclusion in that category were defined or conceptualized. Finally, categories were grouped together in the same way to form more abstract themes, and relationships among themes were theorized and discussed. The findings of this analysis raised some interesting issues and have been published elsewhere. 18-20 In this process of abstracting and reducing the data, we lost some aspects of our nurse informants knowledge of human suffering. Left out of our scientific analyses were the descriptions these nurses had given us of suffering NURSING OUTLOOK
as embodied in specific patients and told in stories from their practice that were unique and self-contained. Pain Many of the stories our informants told us about suffering began with physical pain. Typical was this story one nurse related about a 25year-old law student from Chicago, [He] came in with Hodgkin’s He had bone marrow involvement. He was in real severe pain. He was on a morphine drip. He would get these episodeswhere his pain was so bad he couldn’t stand it. He was screaming. One night I just didn’t know what to do for him. I gave him morphine. I just gave him all these drugs IV push to try and do something about his pain, but things weren’t touching him. I just gave him unbelievable amounts of IV Demerol and IV Dilaudid. I was really nervous becauseI had given him so much drugs, I’m going to knock out his respiratory status. I’m watching him so carefully, still his pain is so bad. I was so worried about him I went home, and I called up when I got home. ‘Is he OK, is his pain better?’ Well, finally, when he got his chemotherapy it knocked out the tumor, and he did pretty well the pain stopped.
Multiple Dimensions In the stories physical pain was rarely the sole dimension of suffering. Evidently, in the minds of these nurses, suffering was a more complex phenomenon. An example is this story of a man with congestive heart failure and COPD: [He] was an older man. He was, like, 88. [He] had been in a good state of health until about 2 years previous, [when he had] started to decline. He was hav ing some ischemia in his left leg and pain that was just unbearable for him. The pain was just excruciating. Well, he was suffering because of the pain, but he was suffering [also] becausehe couldn’t go out anymore. And he couldn’t help his wife anymore, who needs a lot of help becauseof her health. Sohe was suffering physically and in other ways. Maybe emotionally just seeing his own decline.
An interesting aspect of suffering found in these narratives was that it
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involved an element of social unacceptability or embarrassment. Many of these nurses talked about nausea as often involved in a patient’s suffering. Nausea is not only an unpleasant sensation that all of us can identify with, it is also the precursor to an act that is one of the most unacceptable things that one can do in the presence of others. Another nurse told the story of a patient who epitomized this idea of suffering as embarrassment with discomfort, [There was this woman] who had gasafter an hysterectomy. That is some really bad pain. And all she [could do] was walk around the halls and pass gas. That is kind of misery because it is something that is. embarrassing and painful at the same time.
Multiple Problems In their stories it was clear that the more problems patients had, the more likely their suffering was increased. One nurse described a woman who suffered because of pain, disfigurement, and social isolation: I think she had bladder cancer. Then she was radiated up the ‘wazoo.’ She was just a case.She was basically one big abscess from the belly button down. And so, I mean, that woman suffered! She didn’t have anybody. She had no really close friends. The one neighbor that she had that she could kind of count on basically turned her back on her becauseit was too much for her to carry. She was a woman who didn’t have anybody.
In this same vein, a nurse told us of a man in his early 30s who had a heart attack: He was suffering. It was really socialnot only his relation to women and his sexual concerns,but his job. He could not go back to his job. He had to change his career.He had physical pain too it was angina. He came back again 2 years later with angina. They ruled out the MI. He had done better with his career. He had made the change, but he still was very anxious. He didn’t have the support systemshe needed . and he was still sort of dating a lot of women, and he still hadn’t found any significant relationship with a woman [also] he Kahn and Steeves
26 1
didn’t have family support. [Part of his suffering was] that he had to face these changes in his life on his own. From another nurse there was the story of a woman who faced multiple problems and changes in her life and decided to handle the suffering in her own way: She was an elderly lady who had a heart attack and gone into. cardiac failure. She was old and sharp as a tack. She re alized that she had to go into a nursing home because she could no longer take care of herself, and that was the worst thing to her. I was working with her to keep her home, but we just reached a point where she just couldn’t do it. Even with the aide support that I could give her, it wasn‘t enough. She needed nighttime support, and she needed nursing care.Soshe said, ‘Well, I don’t want to go into a nursing home. I’m gonna try to kill myself. Can you help me?’ And I said, ‘No I can’t help you.’ It was really awkward, and she was perfectly right. She had made the decision ‘I don’t want to go into a nursing home. I want to die.’ And I was the health careperson with the idea that this person made a rational choice, but I can’t support it. Even though I might emotionally support it, I couldn’t help her the way she wanted helpWe had talked about suffering, and she had suffered enough.. She was tired. She didn’t want her family to suffer. She knew it would be a hardship to her son and his finances. He didn’t deserve that. After our interview, I called her son at work, and I said, “You got to come home and seeyour mother tonight because she is really feeling down and needs your support” I had to [leave her]at 530 and [he came home at 6001. When he came, she was dead. I remember that when I first got to her house, she had been pacing up and down the hall, which was just about killing her. And I said, ‘What are you doing!’ And she had said, ‘I’m trying to kill myself.’ That was a good way to do it. Somaybe she just returned to pacing after I left. I don’t know.
Suffering Spiritua/ly Another nurse told a story in which it was obvious the suffering of patients can extend into the realm of the spiritual. Patients can suffer spiritually: [There was this] patient who I had been very close with for a long period of time. She was the kind of woman 262
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who was the head of her household, the Almighty Mother, you know. She cooked, baked, ckaned, dealt with her role, and loved it. She didn’t want anyone elsein her family to take over those roles. Shewas a doer for them, and that was her role. When she began deteriorating and couldn’t do these things more and more, it was extremely painful for her emotionally. [This was] really exacerbated when she began dying. In the last 2 or 3 days of her life I saw a real change. Shewas also one who would not or could not tell tell me about her pain she was very stoic. I knew she must be having [pain] because I could see the physical expression [of it]. But she was a martyr, so to speak, and didn’t want to complain. So she really began to deteriorate, more ascites. She could not keep anything down, and she was abso lutely miserable. We talked about the alternatives that were available to her, and one of them was coming into the hospice inpatient unit and seeing if we could sink a tube to get the vomiting controlled so we could get some pain meds down her and clear up some of her pain, which had started to increase. She was starting to say that she had pain. The other alternative [was for her to] stay home. [We wouid] try as hard as we could to get her comfortable [at home] but we were not sure that we could do that at all. .Well, she and her family talked about it, and she made a decision to come in. That was a big step for her. She got there, and suddenly her pain exacerbated. She was screaming in pain (this was a stoic woman). Shekept saying ‘I am burning. I am burning. I am burning.’ What was she burning with! I kept looking. There was no rash. There was nothing. What is going on?. We were giving her Demerol, and we couldn’t give her enough. Dilaudid, we could not give her enough. It was not helping. Finally she said ‘God is punishing me. He is letting me know that this is what hell is going to be like when I get there.’ I said, ‘What are you talking about?’ And she said, ‘I’ve been bad. I’ve done very bad in my life.’ I said, ‘Oh, my God, Mary, no you haven’t.’ [I decided] clearly I needed some help here because I don’t know where she is coming from. I got a hold of a priest (she was catholic), and he came and he spent a couple of hours with her. Shecalmed down. The situation was that God was punishing her. Shewas very afraid of what was going to happen to her when she died, and she knew she was getting close.
h&f amiZiu#iwiq Other nurses had d&zivered a chssitally tragic side of suffering. For&em the most poignant examples of suffering had an ironic twist to them. For instance there was the story of the man who came into a urology floor for a penile prosthesis: He was a pretty severe diabetic [but] he was very healthy coming in. He was in relatively good control of his diabetes. And that was really his only problem [but] it was really a sadsituation. He ended up having his penis removed because it was necr&. What started out being s positive thing that he and his wife would be able to have sex in the future, ended up being just absolutely devastating. It doesn’t happen a lot, and most peopIe go home as~happyas a clam. But for the ones who [become necrotic] it is just devastating. This guy was in his mid-50s. And-the thing that was hard too, I think, was that we didn’t seehimgrieve a lot over it. He was always just kind of chipper about it, and we knew that he must just be going through hell. You can goon living without a penis. This was sad. It was like a side effect, a result of what he was trying to do iust to improve himself.
These stories demonstrate that&e suffering of patients has a strong effect on the nurses who t;ake care of them. Et may make nurses. despair of their profession. One nurse, wherrtalking about her generalexperiences in anintensive care unit land how the nuI.czs .&ere talked to each other, expressed ih& idea clearly: In ICU you wondered why you web pr&qing the su&eeringof p*Ie. Ycu re&y would. We’d dk &&&ii And we would say, Iiie, ‘Well, we’re @st contributing to the suffering.” [We -wtild say things like] ‘Why are we doing
this? I’m tired of making patients suffering they witness in their clinical suffer.’ I think it is one of the reasons practices is clear in the narratives above. why we all leave ICU after awhile. A witness is a special kind of moral
Another nurse spoke about a specific case that caused a personal withdrawal from nursing for a while. In this case, it was not that muses contributed to suffering, just that nursing can bring one too close to it:
agent, one with an obligation to speak out about that which is witnessed. The role of a witness may be viewed in four common ways, each of which provides an argument for the importance of speaking out and points out the possibilities inherent in further development of nursing’s collective voice.
titioner and sufferer both. This cost was apparent in Vachon’s study of occupational stress, in which she described the negative consequences such distancing had on a portion of the nurses she studied.22
Ceremonial Role A second aspect of the witness as a moral agent is a ceremonial one. In When I was working the surgical intenmost cultures, significant life events sive care unit, there was this 16year-old boy-1 almost left nursing because of are often accompanied by rituals of this. I was on the night shift, and he transition or “rites of passage” that redidn’t arrive until 4 in the morning. But quire witnesses to substantiate them.23 it was literally a train wreck. He had A witness is a The importance of nurses as ceremobeen crossing a railroad track, rushing to nial witnesses has not been paid much special kind of his football practice on his bike, got beattention, although such ritual partictween two cars and they backed up and moral agent, one ipation is often central to healing in squashedhim. He had major trauma and with an obligation was in acute renal failure-you know, other cultures.24 More work such as very high potassiums, electrolytes were to speak out. Wolf’s ethnography of a hospital nursway off. So [he] probably never would ing unit is needed to begin such dehave lived anyway. He had gone from scription of ritual roles in nursing dialysis to surgery, dialysis to surgery to practice.25 dialysis then to our unit. He ended up As hospice nurses, we observed many going into heart block; first degree, sec- Firsthand Observation ond, then third, and [then] standstill, and First, a witness is one who has observed times that an important, but unspoken, we couldn’t get him back. He had en- important events firsthand and is thus role of ours seemed to be that of a certered the hospital over 24 hours before able to inform others of what was ob- emonial witness. It was our role to [he came to our unit], and he had been watch the struggle of patients against going from surgery to dialysis. I’m served. The assumption behind this the symptoms that accompanied terminot sure why his family wasn’t there. agency is that the person is able to The doctor had probably told them to go understand what is observed and sub- nal illness; their progressive decline; home and rest beta usethe boy was stable. sequently remembered. That this as- the growing realization of the inevitaSo by the time th’: family got there, he sumption holds for nurses and suffer- bility of their deaths among their famhad died, and we couldn’t get him back. ing is apparent. However, what is more ilies and other caregivers; and finally, When I first met him, I went to the di- striking is the immediacy of the lan- of their death itself. Our presence over alysis unit, and introduced myself. I guage used to describe suffering expe- time seemed to validate the transition hadn’t taken care of that many children. for the family in some way. I didn’t work peds. His eyes opened up, riences. In the accounts of suffering and they were black [and he looked up at above the nurses show no inclination Expert Witness me]. He was intubated and had a ‘G’ suit to resort to professional idioms that on. so terrified. Just terrified. I held serve to reduce “the peculiarly human An expert witness is one who testifies his hand and did whatever I could for quality of suffering.“21 or speaks in public forums about the him just to let him know that I was there The observation of such events special knowledge their expertise and I cared. By the time he was going brings to a public issue. Our obligation through the first, second,and third heart clearly has an impact on the witness as block, he was unconscious. SoI didn’t see well. This is obvious every time wit- as nurses based on our knowledge of that he was sufferng, but his father and nesses to natural and other kinds of di- suffering is to bear witness in all kinds his brother-it was just awful. I mean, sasters are interviewed on the local of public forums. We must speak out in they were just sobbing over his bed. To news. They seem to need to speak courtrooms, in legislative hearings, and me, that was suffering. Sixteen years old. about what they have seen and usually in the press, for example, with the goal I mean, his whole life was gone. I never do so readily. In this sense, to remain of improving and remaking a health work in peds. silent about the suffering one has seen care system that is more in line with is to deny both the suffering and its our professional values and beliefs impact. Again, this is the problem of about health, illness, and caring. THE NURSE AS WITNESS AND MORAL AGENT the medical model. It offers a way for The last point that we wish to make is practitioners to distance themselves Bearing Witness an ethical one. Th.at nurses develop a from suffering, but at the cost of deper- Finally, the fourth sense of the witness knowledge and understanding of the sonalizing and dehumanizing the prac- is that of a visionary. To witness is to NURSING OUTLOOK
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testify to one’s faith in a collective vision of the future. (This vision is necessarily utopian, but having it helps move things along.) Such witnessing is particularly important to the extent that social, cultural, and political structures contribute to suffering; Farias’ description of the suffering encountered clinically in a group of Salva doran refugees suitably illustrates this point2” Nursing’s vision will develop as we each speak out about the suffering we encounter, about how it is best responded to and relieved, and about a future in which no one’s suffering is ignored. B
5. 6.
7. 8.
9.
10 We acknowledge the support of Sigma Theta Tau, Psj Chapter, for the research study on which this article is based. An earlier version was presented as the Twelfth Annual Father Edward J. Corman Memorial Lecture, Alpha Chi Chapter of Sigma Theta Tau and Boston College School of Nursing.
11 12 13
Cassell EJ. The nature of suffering and the goals of medicine. N Engl J Med 1982; 306:639-45. Kahn DL, Steeves RH. The experience of suffering: conceptual clarification and theoretical definition. J Adv Nurs 1986;11:62331. Chinn PL, Wheeler CE. Feminism and nursing. NURS OUTLCDK 1985,33,74-7. Mason DJ, Backer BA, Georges CA. Toward a feminist model for the political empower-
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ment of nurses. Image J Nurs Sch 1991; 23,72-7. Benner P. From novice to expert: excellence andpowerinclinicalnursingpractice. Menlo Park, California: Addison-Wesley, 1984. Zerwekh JV. A family caregiving model for public health nursing. NURSOUTLOOK 1991; 39:213-17. Zerwekh JV. At the expense of their souls NURS OUTLCOK 1991;39:50-61. Hinds C. Suffering: a relatively unexplained phenomenon among family caregivers on non-institutionalized patients with cancer. J Adv Nurs 1992,17,918-25. Duffy ME. A theoretical and empirical review of the concept of suffering. In Starck PL, McGovern JP, eds. The hidden dimension of illness human suffering. New York: National League for Nursing Press, 1992,291. 303. Morse JM, Johnson JL. Toward a theory of illness: the illness constellation model. In Morse JM, Johnson JL, eds. The illnessexperience: dimensions of suffering. Newbury Park, California Sage, 1991,31542. Ferrell BF. To know suffering. Qncol Nurs Forum 1993,20:1471-7. Steeves RH, Kahn DL. Experience of meanmg in suffering. Image J Nurs Sch 1987, 19:114-16. Starck PL, McGovern JP. The meaning of suffering. In Starck PL, McGovern JP, eds. The hidden dimension of illness: human suffering. New York: National League for Nursing Press, 19922542. Steeves RH. Patients who have undergone bone marrow transplantation: their quest for meaning. Oncol Nurs Forum 1992;19:899905. Kahn DL. Living III a nursing home: experiences of suffering and meaning in old age [Unpublished doctoral dissertation]. Univer sity of Washington, Seattle, 1990.
16. Steeves RH. The experiences of suffering and meaning in bone marrow transplant patients [Unpublished doctoral dissertation]. University of Washington, Seattle, 1988. 17. Kushton CH. Care-givers’ suffering in critical care nursing. Heart Lung 1992;21:303-6. 18. Steeves RH, Kahn DL, Benoliel JQ. Nurses’ interpretation of the suffering of their patients West J Nurs Res 1990312:715-31. 19. Kahn DL, Steeves RH. Caring and practice: constructron of the nurse’~ world. Scholar Inq Nurs Pratt 1988;2:201-i6. 20. Kahn DL, Steeves RH, Ben&e1 JQ. Nurses’ views on the coping of patients. Sot .SciMed 1994;38:1423-30.
21. Kleinman A, Kleinman J. Suffering and its professional transformation, to-ward an ethnography of interpersonal experience. Cult Med Psychiatry 1991;15:275-302. 22. Vachon MIS. Occupational stressin the care ot the critically ill, the dying, and the hereaved. Washington. Hemisphere, 1987: 244371.
23. Turner V, The ritual process: structure and anti-structure. Chicago, Aldine 1969. 24. Helman C. Culture, health, and illness. Bristol, England, lohn Wright & Sons 1984:45-162. 25. Wolf 2. Nurses work: the sacred and profane Philadelphia: University of Pennsylvania Press, 198868-28 1. 26. Farias PJ,Emotional distress and its socicrpolitical correlates in Salvadoran refugees: analysis of a clinical sample. Cult Med Psychiatry 1991;15:167-92. DAWD L. KAH?d is an assis3af-d pTzflfgs?3r in th$ School crf Nursing &the UfiiVWsky of Texas at Austin.
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ence of suffering; are of paramount importance in understanding and interpreting the Iconstruction of any given individual’s suffering.*1 15-17Finally, the suffering of an individual deeply affects those who care for that person.iO~17,l8
Suffering is hnked inextricably to issues of meshing and quality of life. NARRATIVES OF SUFFERING That nurses in practice know and understand a great deal about suffering was made clear to us during a study we did several years ago concerning the language of nurdng practice. In this phenomenologic study, we interviewed 26 nurses who had returned for graduate study in nursing about what suffering, caring, and coping meant to them within the context of their clinical practices. Our original analysis of these data relied on a typical qualitative technique to reduce and abstract textual data across individual informants in order to derive themes that applied to the data as a whole. First, we coded the data, breaking the texts down into verbatim statements that could be grouped across participants according to observed similarities. Each group of statements then was labeled as a category and rules for inclusion in that category were defined or conceptualized. Finally, categories were grouped together in the same way to form more abstract themes, and relationships among themes were theorized and discussed. The findings of this analysis raised some interesting issues and have been published elsewhere. 18-20 In this process of abstracting and reducing the data, we lost some aspects of our nurse informants knowledge of human suffering. Left out of our scientific analyses were the descriptions these nurses had given us of suffering NURSING OUTLOOK
as embodied in specific patients and told in stories from their practice that were unique and self-contained. Pain Many of the stories our informants told us about suffering began with physical pain. Typical was this story one nurse related about a 25year-old law student from Chicago, [He] came in with Hodgkin’s He had bone marrow involvement. He was in real severe pain. He was on a morphine drip. He would get these episodeswhere his pain was so bad he couldn’t stand it. He was screaming. One night I just didn’t know what to do for him. I gave him morphine. I just gave him all these drugs IV push to try and do something about his pain, but things weren’t touching him. I just gave him unbelievable amounts of IV Demerol and IV Dilaudid. I was really nervous becauseI had given him so much drugs, I’m going to knock out his respiratory status. I’m watching him so carefully, still his pain is so bad. I was so worried about him I went home, and I called up when I got home. ‘Is he OK, is his pain better?’ Well, finally, when he got his chemotherapy it knocked out the tumor, and he did pretty well the pain stopped.
Multiple Dimensions In the stories physical pain was rarely the sole dimension of suffering. Evidently, in the minds of these nurses, suffering was a more complex phenomenon. An example is this story of a man with congestive heart failure and COPD: [He] was an older man. He was, like, 88. [He] had been in a good state of health until about 2 years previous, [when he had] started to decline. He was hav ing some ischemia in his left leg and pain that was just unbearable for him. The pain was just excruciating. Well, he was suffering because of the pain, but he was suffering [also] becausehe couldn’t go out anymore. And he couldn’t help his wife anymore, who needs a lot of help becauseof her health. Sohe was suffering physically and in other ways. Maybe emotionally just seeing his own decline.
An interesting aspect of suffering found in these narratives was that it
NOVEMBER/DECEMBER
1994
involved an element of social unacceptability or embarrassment. Many of these nurses talked about nausea as often involved in a patient’s suffering. Nausea is not only an unpleasant sensation that all of us can identify with, it is also the precursor to an act that is one of the most unacceptable things that one can do in the presence of others. Another nurse told the story of a patient who epitomized this idea of suffering as embarrassment with discomfort, [There was this woman] who had gasafter an hysterectomy. That is some really bad pain. And all she [could do] was walk around the halls and pass gas. That is kind of misery because it is something that is. embarrassing and painful at the same time.
Multiple Problems In their stories it was clear that the more problems patients had, the more likely their suffering was increased. One nurse described a woman who suffered because of pain, disfigurement, and social isolation: I think she had bladder cancer. Then she was radiated up the ‘wazoo.’ She was just a case.She was basically one big abscess from the belly button down. And so, I mean, that woman suffered! She didn’t have anybody. She had no really close friends. The one neighbor that she had that she could kind of count on basically turned her back on her becauseit was too much for her to carry. She was a woman who didn’t have anybody.
In this same vein, a nurse told us of a man in his early 30s who had a heart attack: He was suffering. It was really socialnot only his relation to women and his sexual concerns,but his job. He could not go back to his job. He had to change his career.He had physical pain too it was angina. He came back again 2 years later with angina. They ruled out the MI. He had done better with his career. He had made the change, but he still was very anxious. He didn’t have the support systemshe needed . and he was still sort of dating a lot of women, and he still hadn’t found any significant relationship with a woman [also] he Kahn and Steeves
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didn’t have family support. [Part of his suffering was] that he had to face these changes in his life on his own. From another nurse there was the story of a woman who faced multiple problems and changes in her life and decided to handle the suffering in her own way: She was an elderly lady who had a heart attack and gone into. cardiac failure. She was old and sharp as a tack. She re alized that she had to go into a nursing home because she could no longer take care of herself, and that was the worst thing to her. I was working with her to keep her home, but we just reached a point where she just couldn’t do it. Even with the aide support that I could give her, it wasn‘t enough. She needed nighttime support, and she needed nursing care.Soshe said, ‘Well, I don’t want to go into a nursing home. I’m gonna try to kill myself. Can you help me?’ And I said, ‘No I can’t help you.’ It was really awkward, and she was perfectly right. She had made the decision ‘I don’t want to go into a nursing home. I want to die.’ And I was the health careperson with the idea that this person made a rational choice, but I can’t support it. Even though I might emotionally support it, I couldn’t help her the way she wanted helpWe had talked about suffering, and she had suffered enough.. She was tired. She didn’t want her family to suffer. She knew it would be a hardship to her son and his finances. He didn’t deserve that. After our interview, I called her son at work, and I said, “You got to come home and seeyour mother tonight because she is really feeling down and needs your support” I had to [leave her]at 530 and [he came home at 6001. When he came, she was dead. I remember that when I first got to her house, she had been pacing up and down the hall, which was just about killing her. And I said, ‘What are you doing!’ And she had said, ‘I’m trying to kill myself.’ That was a good way to do it. Somaybe she just returned to pacing after I left. I don’t know.
Suffering Spiritua/ly Another nurse told a story in which it was obvious the suffering of patients can extend into the realm of the spiritual. Patients can suffer spiritually: [There was this] patient who I had been very close with for a long period of time. She was the kind of woman 262
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who was the head of her household, the Almighty Mother, you know. She cooked, baked, ckaned, dealt with her role, and loved it. She didn’t want anyone elsein her family to take over those roles. Shewas a doer for them, and that was her role. When she began deteriorating and couldn’t do these things more and more, it was extremely painful for her emotionally. [This was] really exacerbated when she began dying. In the last 2 or 3 days of her life I saw a real change. Shewas also one who would not or could not tell tell me about her pain she was very stoic. I knew she must be having [pain] because I could see the physical expression [of it]. But she was a martyr, so to speak, and didn’t want to complain. So she really began to deteriorate, more ascites. She could not keep anything down, and she was abso lutely miserable. We talked about the alternatives that were available to her, and one of them was coming into the hospice inpatient unit and seeing if we could sink a tube to get the vomiting controlled so we could get some pain meds down her and clear up some of her pain, which had started to increase. She was starting to say that she had pain. The other alternative [was for her to] stay home. [We wouid] try as hard as we could to get her comfortable [at home] but we were not sure that we could do that at all. .Well, she and her family talked about it, and she made a decision to come in. That was a big step for her. She got there, and suddenly her pain exacerbated. She was screaming in pain (this was a stoic woman). Shekept saying ‘I am burning. I am burning. I am burning.’ What was she burning with! I kept looking. There was no rash. There was nothing. What is going on?. We were giving her Demerol, and we couldn’t give her enough. Dilaudid, we could not give her enough. It was not helping. Finally she said ‘God is punishing me. He is letting me know that this is what hell is going to be like when I get there.’ I said, ‘What are you talking about?’ And she said, ‘I’ve been bad. I’ve done very bad in my life.’ I said, ‘Oh, my God, Mary, no you haven’t.’ [I decided] clearly I needed some help here because I don’t know where she is coming from. I got a hold of a priest (she was catholic), and he came and he spent a couple of hours with her. Shecalmed down. The situation was that God was punishing her. Shewas very afraid of what was going to happen to her when she died, and she knew she was getting close.
h&f amiZiu#iwiq Other nurses had d&zivered a chssitally tragic side of suffering. For&em the most poignant examples of suffering had an ironic twist to them. For instance there was the story of the man who came into a urology floor for a penile prosthesis: He was a pretty severe diabetic [but] he was very healthy coming in. He was in relatively good control of his diabetes. And that was really his only problem [but] it was really a sadsituation. He ended up having his penis removed because it was necr&. What started out being s positive thing that he and his wife would be able to have sex in the future, ended up being just absolutely devastating. It doesn’t happen a lot, and most peopIe go home as~happyas a clam. But for the ones who [become necrotic] it is just devastating. This guy was in his mid-50s. And-the thing that was hard too, I think, was that we didn’t seehimgrieve a lot over it. He was always just kind of chipper about it, and we knew that he must just be going through hell. You can goon living without a penis. This was sad. It was like a side effect, a result of what he was trying to do iust to improve himself.
These stories demonstrate that&e suffering of patients has a strong effect on the nurses who t;ake care of them. Et may make nurses. despair of their profession. One nurse, wherrtalking about her generalexperiences in anintensive care unit land how the nuI.czs .&ere talked to each other, expressed ih& idea clearly: In ICU you wondered why you web pr&qing the su&eeringof p*Ie. Ycu re&y would. We’d dk &&&ii And we would say, Iiie, ‘Well, we’re @st contributing to the suffering.” [We -wtild say things like] ‘Why are we doing
this? I’m tired of making patients suffering they witness in their clinical suffer.’ I think it is one of the reasons practices is clear in the narratives above. why we all leave ICU after awhile. A witness is a special kind of moral
Another nurse spoke about a specific case that caused a personal withdrawal from nursing for a while. In this case, it was not that muses contributed to suffering, just that nursing can bring one too close to it:
agent, one with an obligation to speak out about that which is witnessed. The role of a witness may be viewed in four common ways, each of which provides an argument for the importance of speaking out and points out the possibilities inherent in further development of nursing’s collective voice.
titioner and sufferer both. This cost was apparent in Vachon’s study of occupational stress, in which she described the negative consequences such distancing had on a portion of the nurses she studied.22
Ceremonial Role A second aspect of the witness as a moral agent is a ceremonial one. In When I was working the surgical intenmost cultures, significant life events sive care unit, there was this 16year-old boy-1 almost left nursing because of are often accompanied by rituals of this. I was on the night shift, and he transition or “rites of passage” that redidn’t arrive until 4 in the morning. But quire witnesses to substantiate them.23 it was literally a train wreck. He had A witness is a The importance of nurses as ceremobeen crossing a railroad track, rushing to nial witnesses has not been paid much special kind of his football practice on his bike, got beattention, although such ritual partictween two cars and they backed up and moral agent, one ipation is often central to healing in squashedhim. He had major trauma and with an obligation was in acute renal failure-you know, other cultures.24 More work such as very high potassiums, electrolytes were to speak out. Wolf’s ethnography of a hospital nursway off. So [he] probably never would ing unit is needed to begin such dehave lived anyway. He had gone from scription of ritual roles in nursing dialysis to surgery, dialysis to surgery to practice.25 dialysis then to our unit. He ended up As hospice nurses, we observed many going into heart block; first degree, sec- Firsthand Observation ond, then third, and [then] standstill, and First, a witness is one who has observed times that an important, but unspoken, we couldn’t get him back. He had en- important events firsthand and is thus role of ours seemed to be that of a certered the hospital over 24 hours before able to inform others of what was ob- emonial witness. It was our role to [he came to our unit], and he had been watch the struggle of patients against going from surgery to dialysis. I’m served. The assumption behind this the symptoms that accompanied terminot sure why his family wasn’t there. agency is that the person is able to The doctor had probably told them to go understand what is observed and sub- nal illness; their progressive decline; home and rest beta usethe boy was stable. sequently remembered. That this as- the growing realization of the inevitaSo by the time th’: family got there, he sumption holds for nurses and suffer- bility of their deaths among their famhad died, and we couldn’t get him back. ing is apparent. However, what is more ilies and other caregivers; and finally, When I first met him, I went to the di- striking is the immediacy of the lan- of their death itself. Our presence over alysis unit, and introduced myself. I guage used to describe suffering expe- time seemed to validate the transition hadn’t taken care of that many children. for the family in some way. I didn’t work peds. His eyes opened up, riences. In the accounts of suffering and they were black [and he looked up at above the nurses show no inclination Expert Witness me]. He was intubated and had a ‘G’ suit to resort to professional idioms that on. so terrified. Just terrified. I held serve to reduce “the peculiarly human An expert witness is one who testifies his hand and did whatever I could for quality of suffering.“21 or speaks in public forums about the him just to let him know that I was there The observation of such events special knowledge their expertise and I cared. By the time he was going brings to a public issue. Our obligation through the first, second,and third heart clearly has an impact on the witness as block, he was unconscious. SoI didn’t see well. This is obvious every time wit- as nurses based on our knowledge of that he was sufferng, but his father and nesses to natural and other kinds of di- suffering is to bear witness in all kinds his brother-it was just awful. I mean, sasters are interviewed on the local of public forums. We must speak out in they were just sobbing over his bed. To news. They seem to need to speak courtrooms, in legislative hearings, and me, that was suffering. Sixteen years old. about what they have seen and usually in the press, for example, with the goal I mean, his whole life was gone. I never do so readily. In this sense, to remain of improving and remaking a health work in peds. silent about the suffering one has seen care system that is more in line with is to deny both the suffering and its our professional values and beliefs impact. Again, this is the problem of about health, illness, and caring. THE NURSE AS WITNESS AND MORAL AGENT the medical model. It offers a way for The last point that we wish to make is practitioners to distance themselves Bearing Witness an ethical one. Th.at nurses develop a from suffering, but at the cost of deper- Finally, the fourth sense of the witness knowledge and understanding of the sonalizing and dehumanizing the prac- is that of a visionary. To witness is to NURSING OUTLOOK
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testify to one’s faith in a collective vision of the future. (This vision is necessarily utopian, but having it helps move things along.) Such witnessing is particularly important to the extent that social, cultural, and political structures contribute to suffering; Farias’ description of the suffering encountered clinically in a group of Salva doran refugees suitably illustrates this point2” Nursing’s vision will develop as we each speak out about the suffering we encounter, about how it is best responded to and relieved, and about a future in which no one’s suffering is ignored. B
5. 6.
7. 8.
9.
10 We acknowledge the support of Sigma Theta Tau, Psj Chapter, for the research study on which this article is based. An earlier version was presented as the Twelfth Annual Father Edward J. Corman Memorial Lecture, Alpha Chi Chapter of Sigma Theta Tau and Boston College School of Nursing.
11 12 13
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23. Turner V, The ritual process: structure and anti-structure. Chicago, Aldine 1969. 24. Helman C. Culture, health, and illness. Bristol, England, lohn Wright & Sons 1984:45-162. 25. Wolf 2. Nurses work: the sacred and profane Philadelphia: University of Pennsylvania Press, 198868-28 1. 26. Farias PJ,Emotional distress and its socicrpolitical correlates in Salvadoran refugees: analysis of a clinical sample. Cult Med Psychiatry 1991;15:167-92. DAWD L. KAH?d is an assis3af-d pTzflfgs?3r in th$ School crf Nursing &the UfiiVWsky of Texas at Austin.
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