“Nobody Understands”: On a Cardinal Phenomenon of Palliative Care

Abstract

In the clinical practice of palliative medicine, recommended communication models fail to approximate the truth of suffering associated with an impending death. I provide evidence from patients' stories and empiric research alike to support this observation. Rather than attributing this deficiency to inadequate training or communication skills, I examine the epistemological premises of the biomedical language governing the patient-physician communication. I demonstrate that the contemporary biomedicine faces a fundamental aporetic occlusion in attempting to examine death. This review asserts that the occlusion defines, rather than simply complicating, palliative care. Given the defining place of aporia in the care for the dying, I suggest that this finding shape the clinicians' responses to the needs of patients in clinical care and in designing palliative research. Lastly, I briefly signal that a genuinely apophatic voice construing the occlusion as a mystery rather than an aporia may be superior to the present communication and empathy models.

Keywords:

• communication
• death
• palliative care
• physician-patient relations

I. INTRODUCTION

An entry in our medical records opening with a chief complaint, “abdominal and back pain, dehydration,” dated November 19, 2002, notes: “The patient is a 20-year-old male who presents to the emergency department around 0800 hours this Tuesday morning, November 19, 2002. […] The pain was so severe that it was preventing him from sleeping for several days prior to the admission.” I saw this patient within minutes from the initial request for consultation and admission to the Palliative Care Unit. The severe discomfort led not only to insomnia, but also to a growing sense of despair. On completion of pain crisis intervention, he was asked about his resuscitation preferences. Pain largely resolved, Steve answered (reconstructed): “Well, of course I want to be brought back to life. I do not want to die. I want to live.” Then, in response to an offer of psychological support or grief and peer counseling, he said: “It is me who's dying. They are not. They will walk out of this room, I will not. Nobody understands … what am I going to say? Nobody understands.” What am I, the attending physician, indicted along with the “they” of not understanding, going to say in the medical chart requiring clarity of presentation?

The practice of palliative medicine indeed involves unique challenges. Patients and their families experience a sense of tragedy and commonly articulate complex dilemmas (Hermsen & ten Have, 2003) reflecting two fundamental problems characteristic of palliative practice. The first problem is specific: what constitutes good, and what are the goals of palliative care for this patient? How does one, for instance, counsel and care for those requesting artificial extension of life or, on the other end of the spectrum, euthanasia? Ethical dilemma notwithstanding, bioethicists and clinicians alike agree that an individual's goals can be identified in the process of medical decision-making (Tsevat et al., 1998; Fried, Bradiey, Towle, & Allore, 2002). This interpretative optimism parallels a broader, overlapping consensus (Materstvedt, 2003) on goals (Sepulveda Marlin, Yoshida, & Ullrich, 2002) and principles of palliative care (Council on Scientific Affairs, 1996; Meier & Morrison, 2002; Materstvedt et al., 2003). The second problem encountered in the practice of palliative care derives from an even more fundamental characteristic of the field: the limits of thinking of death itself.

In practicing palliative medicine, we do care for dying patients and remind doctors that death exists (Arnold, 2002). Indeed, the field of palliative medicine primarily is defined by the specter of approaching death. In clinical settings, the most commonly posed questions pertain to death, dying, and meaning (Strang & Strang, 2002). Thus, the second problem reveals its properly general form: what “is” death and what does it signify? Is it indeed self-explanatory so that a common understanding of the term could be assumed? It is evident that the questions about specific goals and character of a palliative course of care already presuppose a set of more general concepts, which nevertheless remain to be clarified. Indeed, “whether doctors like the idea or not, human action is inevitably theory-driven” (Cassell, 1991, p. 5). Yet, consideration of what the term “death” may signify has been absent from the palliative care-related scholarship: “the national debate [about death and dying] has not been about death itself”(Callahan, 1993, p. 13).

In response to clinical challenges arising in the context of these two problems, the specialty of palliative medicine emerged as a field of expertise in management of symptoms, complications, communication, and decision-making, as well as psychosocial care (Davis, Walsh, LeGrand, & Lagman, 2002). Facing critical ethical and human dilemmas, clinicians apply and extend the principles of medical ethics and the communication process by advancing a more specific knowledge of systematic methods of discerning care-related values and preferences (Lo, Quill, & Tulsky, 1999; Coulehan et al., 2001; Platt et al., 2001; Quill, Arnold, & Platt, 2001; Back, Arnold, & Quill, 2003). Consequently, an intermediary between ethical theories and pure clinical care, scholarship that is fundamental to the practice of palliative care examines the patient-physician relationship and the clinical communication process. An essential methodological premise in this adjuvant, yet critical, discipline preferentially admits a fact-specific, inductive process for collecting information (Capron, 1994; Lipkin, Putnam, & Lazare, 1995; Roter et al., 1997; Fried et al., 2002). Such a process assumes that individual concerns and beliefs are ultimately knowable and hence can be analyzed and acted on during medical decision-making.

Two concerns shape this article. The initial concern corresponds to the first specific problem confronting palliative care identified above. Here I wish to examine whether these presumably expressible and discernible preferences of patients facing death are accessible to the comprehension and analysis accepted in medical practice. Notably, several diverse populations have been sampled in recent years to determine the preferences of patients facing death. The answers, however, can only be as good as the questions posed by the researchers. The findings, however, have been limited by incompleteness of semiotic or phenomenological reflection on the terms under study or a consideration of limits of phenomenological methodology (Derrida, 1993; Geanellos, 1998, 2000; Fine & Jennings, 2003) implicit in inclusion of focus groups (Steinhauser et al., 2000) or in-depth interviews (Coyle & Sculco, 2003). In a rejoinder to the existing research that deliberately remains testimonial of a lived experience (Geanellos, 2000) rather than a systematic inquiry (Fine & Jennings, 2003), I will report patients' and caregivers' own accounts of illness and suffering. Existing research evidence will be scrutinized to give interpersonal and rigorous, empirical support to the consensus emerging from patients' stories. Analysis of both sources will disclose themes of hesitation and silence rather than comprehension and communication.

The second concern, corresponding to the general problem of palliative care identified above, is taken up in the latter sections (IV-V) of this paper. There, I question two possible etiologies of an occlusive impasse of clinical understanding and communication first signaled by the evidence reviewed in the earlier sections (II-III). Is the difficulty in comprehending the experience of a life-threatening illness a result of a failure of clinicians to apply an otherwise available and sound understanding of what death or dying means? Or, contrarily, do the recurring instances of miscomprehension reflect a fundamental and impassable occlusion that in turn arises from an impossibility (within biomedically privileged epistemology) of an understanding of what death is? In other words, when caring for the most challenging patients at the end of life, are we facing particularly difficult, yet solvable communication problems or an impassable and, at the same time, defining aspect of palliative care? I will argue that the latter is the case. Specifically, although palliative practitioners and scholars usually refrain from giving an account of the concept of death, one can discern, within the history of thought allied with palliative medicine, certain latent, conceptual accounts of death. However, I will demonstrate how these accounts lead to the logical impossibility of thinking about death and thus the impossibility of the project of palliative medicine within the framework of biomedical language. To address this aporia of understanding death, I argue that the current models and processes of care need radical rethinking. Thus, in the final section of the paper, I will suggest that a notion of mystery replacing logical impossibility or phenomenological aporia may allow us to recover a genuine possibility of palliative medicine.

II CLINICAL COMMUNICATION: PATIENTS AND EXPERTS

In the following section the basic characteristics of patient-physician communication will be described. Utilizing position statements and guidelines from the patient-physician relationship and palliative care fields, the crucial elements of clinical engagement as they relate to the process of understanding symptoms and preferences of patients will be identified. The patients' own narratives follow to illuminate the process of communication with dying patients in ways not addressed by the available expert constructs.

A Consensus of Experts

The clinical communication process occurs in the medium of a medical interview. There are three functions of this process: (1) determining and monitoring the nature of the problem, (2) enabling a therapeutic relationship, and (3) educating the patient (Lipkin et al., 1995; Roter et al., 1997). The first function is concerned with acquisition of factual data, both biomedical and psychosocial. The inclusion of personal narrative threads, countertransference, or advanced techniques such as open-ended, normalizing, and empathic comments (Lo et al., 2002) or Lipkin's listening at multiple levels (Lipkin et al., 1995) supports the primary objective: the collection of data in order to generate hypotheses which will lead to differential diagnoses (Goold, Williams, & Arnold, 2000) for the purpose of medical decision-making. The second relational function of the medical interview aims at defining and communicating the physician's role, interest, respect, and empathy. Similar to the first function, the second function of the medical encounter depends on the specification and expression of external facts and mental states. The third function, related to education and implementation, intends to achieve an understanding of the therapeutic plan, which will ultimately lead to behavioral changes. All three functions prominently include a fact-specific, representational language that utilizes reiterative dichotomizations that inscribe agony as representable mental states and objects (Krakauer, 1998). Consistently included in the postulated models of clinical communication and patient-physician relationship, the medical understanding of empathy warrants further analysis.

According to leaders of the palliative care field, “physician responses [to emotionally laden patient statements] usually consist of efforts to comprehend how things feel to patients and to express that understanding back to patients” (Quill et al., 2001, p. 551). This comprehension follows from empathy or “the ability to ‘connect’ with patients, which lies at the heart of medical practice” (Coulehan et al., 2001, p. 221). Empathy, according to the experts, has three cardinal components. The cognitive element allows the clinician to “… enter into the perspective and experience of the other person” (Coulehan et al., 2001, p. 221) and amounts to “intellectual ability to understand another's perspective and predict their thoughts. Cognitive empathy includes the powers of comprehending, reasoning, analyzing, and critical thinking” (Morse, Bottorff, Anderson, O'Brien, & Solberg, 1992, p. 275). The second aspect of empathy involves emotive focus whereby a clinician is expected to experience “surrogate or ‘resonant’ feelings” and “put herself in the patient's place” (Coulehan et al., 2001, p. 221). The third component, the behavioral element, consists of an ability to “communicate that understanding to the patient” (Coulehan et al., 2001, p. 221). This tripartite conceptualization of empathy represents a consensus from scholarship on communication and the patient-physician encounter, a consensus that is also implicitly accepted in the alternative models of communication (Roter et al., 1995) or decision-making (Quill & Brody, 1996). Notably, an alternative view focuses exclusively on the behavioral component and portrays empathy as a technique of acknowledging a patient's feelings (Buckman, 2001). Mindful of how communication with patients proceeds according to the experts, let us examine what the patients facing life-threatening illnesses actually communicate to the experts. In the following section, the voices of patients corresponding to the three aspects of the postulated empathetic communication are presented.

B Patients' Voices: Empathy as Understanding—Comprehending, Reasoning, Analyzing

A cancer survivor and a sociologist, reflecting on his experience (Frank, 2001, p. 355) of illness and the prospect of dying, wrote recently:

Suffering is the unspeakable, as opposed to what can be spoken; it is what remains concealed, impossible to reveal; it remains in darkness, eluding illumination; and it is dread, beyond what is tangible even if hurtful. Suffering is loss, present or anticipated, and loss is another instance of no thing, an absence. […] Suffering resists definition because it is the reality of what is not.

An international leader in palliative medicine, Dr. Michael Kearney (1997, p. 104) remembered a patient who

… greeted me with the words “I can't see any point in going on like this.” I struggled to find words to reply. “… Meister Eckhart, a medieval mystic, wrote that God is like a great underground river. The underground river is there, Bairbre, way down inside you. Even if you can't feel it, you can choose to trust that it is there.” Bairbre turned to face me…. Her anger was apparent. “Well, that is not where I am. I am not some medieval mystic. I bet he wasn't dying when he wrote these words.”

Commenting on a photograph of dead soldiers, S. Sontag (2003, p. 125) asks, “What would they have to say to us? ‘We’—this ‘we’ is everyone who has never experienced anything like what they went through—don't understand. We don't get it. We truly can't imagine what it was like.” Indeed, in accompanying death, the familiar language of intentional predication seems not to supplement, but rather to stand against the voices of anger, rage, or most properly, loss and disorientation.

A fictional character in Peter DeVries' story (1961, p. 215) authenticates this insufficiency of the ordinary, public language to express the tragedy of life-threatening illness by juxtaposing an internal conversation occasioned by pain and the external clinical and social discourses.

[In a pediatric oncology unit of a hospital] rage and despair are indeed carried about in the heart, but privately, to be let out on special occasions, like savage dogs for exercise, occasions in solitude when God is cursed, birds stoned from the trees or the pillow hammered in the darkness. In the ward lounge itself, a scene in which a changing collection of characters are waiting for a new medicine that might as well be waiting for Godot, the conversation is indistinguishable from that going on at that moment in the street, a coffee break at the office from which one is absent.

Remarking on a similar phenomenon, Virginia Woolf has aptly concluded, “The merest schoolgirl when she falls in love has Shakespeare or Keats to speak her mind for her, but let a sufferer try to describe a pain in his head to a doctor, and language at once runs dry” (Quoted in Autton, 1986, p. 2).

Narratively structured, the theme of cognitive empathy is echoed in the concept of “being a fellow traveler” (Lo et al., 1999). In a reflection amounting to a rejoinder to the notion of a fellowship, a physician and a patient himself, Oliver Sacks (1984, p. 110) remarked that in illness he experienced a sense of alienation and disorientation. He felt as though he “… had fallen off the map, the world, of the knowable.” The sense of alienation frequently resonates in accounts of life-threatening illnesses. A daughter caring for her dying mother recalled a sense of a chasm between the healthy and the ill: “We inhabited different planets, breathed different atmosphere” (Sacks, 1984, p. 110). Another remembered a curious disjunction:

There was a major problem for the hospice, a flood. And my mum's life was drifting away. Yet the life was going on for the staff here. Life stopped for my mum; faltered for me; but for everybody else it's going on (Masson, 2002, p. 191).

Indeed, as an anthropologist remarked, “being ill is above all alienation from the world” (Buytendijk, 1974, p. 62). It is an experience best illustrated in a realization of a terrible metamorphosis not unlike that imagined by Franz Kafka. The rift experienced by the ill, however, may extend even further to afflict the very sense of self.

Kay Toombs, a philosopher and a patient with multiple sclerosis herself, noted an internal discontinuity of the sense of identity produced in the course of illness. Stability of self appears threatened to the point of erasure. It becomes a product of ceaseless reinvention, an uncanny feeling: “When I see myself on a home video, I experience a sense of puzzlement. I catch myself wondering … if the person in the video is really me” (Toombs, 2001, p. 254). If the ill person herself is “puzzled,” hence lacking clear understanding of self-identity, how could even a skilled clinician-observer solve such a puzzle and “understand” the unstable experience in order to achieve the recommended cognitive empathy?

C Patients' Voices: Empathy as Resonance—“To Put Oneselfin the Other's Place”

“How can I—a fat, white, middle—aged GP—really identify with a young Black on crack?” asks Peter Tate, an expert in patient-physician communication (Tate, 1997). Echoing this sentiment, a grieving father might say: “I may find it strange that you should be tearful today but dry-eyed yesterday when my tears were yesterday. But my sorrow is not your sorrow…. I cannot reach out to you. Nor you to me” (Wolterstorff, 1987, p. 56). Hearing a pure sound of despair, how is one to resonate?

Todd, a 39-year-old male with widely metastatic melanoma and a chronic benign pain syndrome, was admitted with intractable pain. Todd's mother, present at the foot of his bed at most times, expressed her anger and anguish. She frequently approached the nursing staff asking about the most trivial aspects of care unrelated to Todd's illness or his symptoms, as the major issues remained much beyond the desired level of control of her or the medical staff. Attempting to align with her experience, one of the physicians with his own history of a similar personal loss stated in the course of counseling: “I think I can imagine how you feel; we will continue to do everything possible to ease Todd's suffering.” The mother turned closer to the physician and replied: “Frankly, I do not think you know how I am feeling.” This sense of impenetrability is familiar not only to physicians and nurses, but also to researchers.

After caring for a 47-year-old patient with cervical cancer, Patricia Boston, a palliative nurse and researcher, remarked:

Sometimes after leaving an interview I felt a sense of helplessness, that perhaps we would never communicate. I was struck by the detachment that existed between us, particularly in me. I felt very much the intruder, often thinking that I had no place in this…. person's life. I tried to think how I could become closer to her, and yet at the same time it seemed that Susan wanted the distance—at least from me, a stranger—because, after all, I was a stranger. (Barnard et al., 2000, p. 335)

Carolyn, a 71-year-old female with widely metastatic ovarian carcinoma who had been transferred to a palliative care unit service, cried: “O God, o God, o God.” While attempting to open a dialog, staff remained arrested rather than resonant with her suffering. Observing that impending death involves a radical metamorphosis inscribed on disfigurement and pain, would an honest resonance on the part of a physician not induce a prohibitively alien feeling of horror? So, the impenetrable “O God, o God” continued to dominate our encounters, echoing the mystery of the “why me, why now” in an alien, rather than a vicarious, voice.

D Patients' Voices: Empathy as Response—Communicating the Understanding Back to the Patient

David, a 40-year-old gunsmith admitted with intractable pain due to metastatic lesions from renal cell carcinoma, recalled his experience with past care:

The total disregard I've got is when they turn around, and you tell them that something is wrong, and they tell you that no, it's not, that it's just you; here, take this [pain medication], more of this will take care of it [the pain] and it doesn't do it. […] You tell them that something is wrong, and they tell you that no, it's not.

Could “they” have said otherwise? Can “they” ever comprehend the terror of one's excruciating pain and communicate such comprehension back? Observations of some of the most experienced and empathetic palliative care physicians afford us a rare insight into the limitations of the communication process.

A dying patient of Dr. Michael Kearney (1997, p. 27) experienced “an eruption of uncontrollable fear, paranoia, and pain.” The physician recognized that

Training in palliative care had introduced me to a holistic model of pain which acknowledged that the “total pain” of the dying individual was a multifaceted and dynamic experience with social, emotional and spiritual as well as physical dimensions, I still felt utterly unequipped to deal with Jackie's overwhelming fear and suffering. I simply did not have means to describe, let alone respond to, what was happening in her situation.

Sometimes an honest attempt to articulate an empathetic response meets a sobering remark. Another of Dr. Kearney's patients (1997, p. 126) was:

Sitting up in bed looking thin, tired and pale…. What seemed to be troubling her [were] nightmares, which left her feeling “isolated, alone and unable to communicate.” Later in the morning she awoke and appeared confused and agitated. I pulled a chair over…. and said: “We are with you. It's okay. It's going to be all right.” At that she stopped her searching for a moment, looked at me as if I were a stranger, and clearly and slowly…. said, “It's not all right.”

While preparing for a biopsy, Arthur Frank (2001, p. 354) remembers being interviewed by a nurse who asked him,

at the end of her inventory of required questions, how my wife and I were coping with my possible cancer. […] Her reply confirmed my worst suspicions about medical pretenses to caring […] “You have to talk to each other,” she admonished as she closed her clipboard and left. End of interview; no follow-up was offered. Of course she was right; we certainly needed to talk to each other. But our suffering was why we could not talk. Our suffering was what we could not say. We feared saying what we felt, and we feared our words could never convey what we felt but would reduce those feelings to complaints and specific concerns. “Don't you know,” I wanted to shout to that nurse as she walked away, “it's what your patients can't say.”

The radically private and unsharable experience of another's death is also familiar to the professionals charged with the task of spiritual counseling and support.

A pastor and hospital chaplain reflected on his practice with a remarkable level of insight:

While still in seminary, I was pastor of a tiny city parish. One Thanksgiving Day, I was informed that Mrs. Bowers' husband had died. He had been at work. I hurried to visit. Mrs. Bowers was calm and welcoming. Bags of groceries were left unpacked on her dining room table. I appreciated her pain but I could think of nothing to say. To my mind, as a pastor, I should have had a store of words, rituals, or holy oils as balm to heal sorrow. I, however, found nothing to say and had no remedy…. Twenty years later, as Chaplain of a mid-sized hospital, I still had no answers. (Paolini, 2003)

Variously modified and unfolded, the difficulties recounted above have been well summarized by Virginia Woolf (1990): “Death was defiance. Death was an attempt to communicate, people feeling the impossibility of reaching the center which, mystically, evaded them; closeness drew apart, rapture faded; one was alone.”

III EVIDENCE-BASED ANALYSIS

The stories of patients and observations of health care providers are further corroborated by evidence from multiple, well-designed studies. Understanding the character and intensity of suffering associated with life threatening illness and impending death is limited at best, sometimes absent altogether. Various explanations can be given to account for this poor communication at the end of life. For now, in order to amplify individual voices of patients, let us review the state of clinical communication from an empirical perspective.

Severe communication problems are reported in up to 40% of patients at the end of life (Higginson & Costantini, 2002). A careful study of 40 survivors of sudden cardiac death and 30 spouses demonstrated a conflict between perceptions and concerns of patients and their spouses (Doolittle & Sauve, 1995). Shared understanding of the event and subsequent character of disability were not accomplished and frequently led to social isolation of the survivors and their spouses. For the spouses the reference point for future decision-making was the arrest; for the survivors the reference point was pre-arrest life. The survivors seemed oblivious to events of cardiac arrest, having little if any insight into the period of cardiac near-death. These differences of recall and insight led to different concerns between spouses and survivors. The incongruence of understanding resulted in a sense of conflict, spousal protectiveness, and entrapment. In one study, family caregivers reported that (1) patients had significantly higher levels of pain compared to patients' own reports, (2) patients experienced significantly greater distress from their pain than the patients reported for themselves, and (3) family caregivers experienced significantly greater distress from the patients' pain than the patients reported for their caregiver (Yeager, Miaskowski, Dibble, & Wallhagen, 1995). Congruence in the perception of discomfort is poor between relatives and nurses. Relatives report significantly more observed behaviors and associate more pain as a reason for patient discomfort than do nurses (Bruera, Sweeney, Calder, Palmer, & Benisch-Tolley, 2001). Several studies showed conclusively the discrepancy between patient and physician rating of pain (Cleeland et al., 1994; Grossman, Sheidler, Swedeen, Mucenski, & Piantadosi, 1991; Larue, Fontaine, & Colleau, 1997), dyspnea (Roberts, Thorne, & Pearson, 1993), and other symptoms (Brunelli et al., 1998; Fontaine, LaRve, & Lassauniere, 1999) of cancer. The degree of congruence was even lower in two cohorts of inpatient cancer patients with advanced disease studied in Europe and the United States (Homsi, Walsh, & Nelson, 2001; Stromgren et al., 2001).

The miscomprehension of patients facing life-threatening illnesses also extends beyond physical suffering. Physicians often misunderstand seriously ill, hospitalized and ambulatory patients' resuscitation preferences (Covinsky et al., 2000). Indeed, one careful study demonstrated that substituted judgment by surrogates is not more accurate than random chance (Suhl, Simons, Reedy, & Garrick, 1994). When medical decision-making preferences were prospectively studied in cancer patients at a palliative care clinic, concordance between the physician and the patient was seen only in 38% of the cases (Bruera et al., 2001). Surrogates' perceptions of patient cardiopulmonary resuscitation preferences are often inaccurate (Layde et al., 1995). Moreover, patient attitudes about living permanently in a nursing home are frequently misunderstood by surrogates and physicians (Mattimore et al., 1997). In a study of surrogate decision-makers' views, patients predicted that both their physicians (90%) and family members (87%) would accurately represent their wishes. However, neither family members nor physicians were able to adequately predict those wishes (Seckler, Meier, Mulvihill, & Paris, 1991). Physicians and surrogates are often unaware of seriously ill patients' preferences. Physicians’, nurses’, and surrogates' understanding of patients' preferences were shown to be only moderately better than chance (Suhl et al., 1994). The care provided to patients is often not consistent with their preferences and is often associated with factors other than patients' preferences or prognoses (Covinsky et al., 2000). Yet physicians substantially differ from their patients on rating factors important for patients in decisions about illness. For instance, a study of patients with lung cancer documented that God was the second most important consideration for their decisions on anti-tumor treatment, whereas their oncologists placed it last in the order of influences on treatment decisions presumed of the patients (Silvestri, Knittig, Zoller, & Nietart, 2003). Patient caregiver agreement about the acceptability of health states with functional or cognitive impairment, severe pain, or other symptoms is poor (Fried, Bradley, & Towle, 2003). From the patients' stories and the research evidence available, one may question whether the present clinical communication models are suitable for patients at the end of life.

IV THE POSSIBILITY OF THINKING OF DEATH

It is evident that in clinical practice, even under the best imaginable conditions of operationalization of the empathic communication triad suggested by the experts, the triad of understanding, resonating, and responding back to the patient stands to share in misunderstanding, alienation, and absence of words. With each patient who defies the expert prescriptions for successful clinical communication, certain uneasiness grows. Perhaps care providers merely face instances of inadequate medical training resulting in substandard diagnostic or communication skills. Yet, could one ascertain preferences or deliver empathic care if death seems to evade thought? Conceivably, one should consider a possibility that this clinical phenomenon signals a fundamental occlusion defining, rather than complicating, palliative care. Ultimately, perhaps we should consider shaping the clinical practice and research methodologies with this ontological occlusion as a cardinal attribute of palliative care. In order to address these concerns, one needs to examine the presuppositions underlying the models of patient-physician communication at the end of life.

I will consider two questions. First, does palliative scholarship provide or explicitly accept a certain concept of death? Second, if such is not the case, what does language recommended for patient-physician communication reveal about implicit understanding of death in biomedicine? How does this language align itself with a broader epistemology and what may it be transmitting to the clinical encounter due to inclusion of such an epistemology?

The first concern relates to the fact that despite the critical role of the term “death,” its ontological or semantic consideration remains absent from palliative scholarship. Surprisingly few historical, anthropological, or medical studies have assimilated the reflection on the limits of thinking about death (Cassell, 1991) in spite of encountering the fundamentally occlusive phenomenon in caring for the incurably ill. As various frameworks of suffering are proposed, the meaning of death is assumed to have a self-evident status. Works such as those of Philip Aries (1991) are exemplary here. They have impacted commentators and clinicians in a way difficult to overemphasize, even though, or perhaps precisely because they remain free of sufficient, preliminary conceptual considerations. Thus, commenting on Aries' exhaustive texts, a contemporary critic writes: “Because Aries did not ground his research in an ontological elucidation of what death is and signifies, he knows neither what he is talking about nor how to determine the problematic closure of his domain” (Derrida, 1993, p. 46).

The inattention to the connotation and limits of death inadvertently determines both the methodologies of research strategies and the ensuing clinical recommendations. The comprehensive efforts of medical disciplines toward improving quality of palliative care focus on important, yet derivative issues. To name just a few, projects aimed at developing secular models of patients' spirituality, improving communication skills, or codifying empathy certainly do go on without proper consideration of what death is and what it signifies. This unexamined ontological status of death has met the resolute critique of non-medical writers. One commentator noted on the theoretical assumptions underlying end-of-life scholarship:

The question of the meaning of death and of the word “death,” the question “What is death in general” or “What is the experience of death?” and the question of knowing what death “is” all remain radically absent as questions. From the outset these questions are assumed to be answered by this anthropologico-historical knowledge as such, at the moment when it institutes itself and gives itself its limits. This assumption takes a form of an “it is self-explanatory:” everybody knows what one is talking about when one names death. (Derrida, 1993, p. 25)

What exactly is this unscrutinized assumption tantamount to? Heidegger explains it in the 49^th section of Being and Time (Heidegger, 1996). Any inquiry related to palliative care, from historical to medical, necessarily presupposes a concept of death. Such a conclusion is logically inescapable from the analysis of the proper objects of these fields of inquiry. Whether a subject of demographics in the form of sophisticated statistics or a subject of medicine in the form of skills and knowledge of palliative care, all these disciplines presuppose, rather than provide, the concept of death. Heidegger articulates this in a supremely cogent remark: “A ‘typology’ of ‘dying’ characterizing the states and ways in which a demise is ‘experienced,’ already presupposes the concept of death” (Heidegger, 1996, p. 230). Yet palliative practitioners and scholars fail to give an explicit account of the concept of death and how it might function within the patient-physician communication models. In the next section I will argue that in spite of the absence of explicit consideration of the concept of death, biomedicine (and its palliative subspecialty) still must reckon with its own, implicit epistemological heritage. However, I will later demonstrate that, if this heritage is accepted, death must appear as alien and unthinkable, hence a subject to banishment. Indeed, the state of exile is precisely what the scholars in the palliative field both observe and lament, without much notice that biomedicine is predicated on, and thus dependent on, re-production of the very exile.

Having shown how a cogent ontological concept of death is not articulated within palliative medicine, one needs to focus next on the representational character of language recommended for communication with patients at the end of life. By employing the tripartite notions of the medical interview and empathy, the communication process presupposes a structure of reference to external objects or affective and cognitive states followed by a process of successive categorizations summarized in a rational demonstration. Many communication guidelines provide inventories of techniques to understand discrete meanings accompanying death and illness (Buckman, 2001, Cherny, Coyle, & Foley, 1994a, 1994b; Lamont & Christakis, 2003). Frequently advocated, advanced interviewing techniques as effective as they are, accept the structure of the recommended communication process, one of representation of facts/events and mental states followed by a deductive-inductive processing. Such processing involves a reconstitution of the embodied experience of illness and anticipation of death into a set of biomedico-social facts (American Society of Clinical Oncology, 2001a; 2001b), a specific epistemological strategy, rather than a neutral or natural state of affairs.

Traces of these epistemological commitments, transmitted to palliative medicine from the modern biomedical project, are discernible during critical transitions in the history of clinical practice. Laennec, the father of modern, scientific medicine, no longer willing to rely on patients' reports, employed a method of bypassing the subjective history in a deliberate effort to make the diagnosis “objective” (Porter, 1997, p. 308). Critical to the new method was the device of a stethoscope. The new apparatus, complementing the new method of clinical practice, accomplished two goals: it allowed a physical distance from the patient (Porter, 1997, p. 308) in the process of examination, and it created a hermeneutic distance privileging “objective,” confident diagnostic process. As another physician later commented, “the sick person has become a thing” (Porter, 1997, p. 311). Far from being epistemologically neutral, this clinical shift illustrates that practice of medicine “is always the practical expression of a theory of medicine” (McWhinney, 2001, p. 331). Indeed, the Foucauldian analysis traced the biomedical strategies that objectify symptoms to devise therapeutic regimens, the clinical gaze, back to Descartes. Alone with no company to distract him, and free to ponder his own and only his own thoughts, Descartes stands out at the outset of his Meditations as a paradigmatic spectator (Levin, 1999). He establishes supremacy of the knowing subject in the process of defining one's sum epistemologically against measurable objects, radically alien from the subject. Biomedicine repeats the Cartesian dictum: analyzing objective signs and interpreting symptoms as pointing to the objective, empirical body, it tacitly, yet unequivocally accepts the rule of dualistic epistemology and its core strategy of representation (repraesentatio), while specific health technologies further predetermine what it means to be. Conversely and critically for our argument, whatever does not reveal itself within means of biomedical technology and the corresponding process of communication, “simply is not” (Krakauer, 1998, p. 534). “By defining human health and propriety, and by maintaining and policing the limits which it establishes, in short, by prescribing [for] human normalcy, physicians as health technicians are standard bearers of Western metaphysics.” (Krakauer, 1998, p. 535)

Indeed, in adherence to the representational strategy, the recommended processes of clinical communication depend on redistributing the “tensions and burnings” of the body in pain and agony into “psychosocial,” that is medical, propositions and hypotheses (Foucault, 1994). Clustered and bifurcated into dyads of objective vs. subjective or physical vs. psychosocial, the emerging discrete data are subsequently entered into models of suffering or “algorithms for disclosure” (Cherny et al., 1994a, 1994b; Lamont & Christakis, 2003), disclosing a new preoccupation with the second term of the biomedical dyad. By providing repertoires and inventories of psychosocial concerns (Chochinov, 2002), the psychological and psychiatric gaze, however, repeats the instrumental dialectics ultimately betraying the same modernistic dualism, albeit with reverse emphasis (Mezzich et al., 1999; Delvecchio Good, Brodwin, Good, & Keinman, 1992). All such frameworks (Roter et al., 1997) share in the method inclusive of the kind of dialectics advanced by Peter Ramus and echoed in the Cartesian project of analytic geometry, a precursor to his epistemology (Pickstock, 1997). Briefly, the first step of the Ramist method was to deduce clear definitions, while the second in a series of dichotomizing arrangements was to elucidate “true” relations between the objects under study. The final result was to lead to indubitable conclusions, exhausting the range of possible interpretations. A method that started as a convenient pedagogical device was subsequently taken to reflect regularity and a pattern of the real world. For years to come, the analytic operations of the mind and eventually the related categories of biomedical scrutiny have been functioning as though a “mirror of nature.” A particular ontology, one favoring autonomous, discrete, representable objects and states which can be known and ordered, followed resulting in an approximation of the limits of what is with what is knowable.

Another discrete trope of the Cartesian etiology of the biomedical “mirror,” whether set in curative or palliative frame, is evident from the characteristic literary genre of medical assessment: the list. The ubiquitous list is almost exclusively the syntax of “past medical history,” “social history,” “review of systems,” or “differential diagnosis” (Goold et al., 2000). Guided by mnemonics or shared recollection of a comprehensive master list, the interviewer is prompted to address a set of arbitrary domains and eventually arrive at a comprehensive catalog of diagnostic possibilities. In a movement doubling the rule of the list, actual care delivered on the basis of the therapeutic plan is itself driven by, rather than simply reflected in, another type of list, the nursing care report (Diamond, 1992) or the SOAP (subjective, objective, assessment, plan) note. It is precisely the syntax utilized by the list that betrays its etiology. The genre of the list follows asyndeton, a modern syntactic development that utilizes and prescribes linear informational sequences, seemingly clear and universal, and thus suited for delivery and consumption of information (Pickstock, 1997, p. 96). Equally important, asyndetic lists create an illusion of immediacy, as though direct, unmediated insight into “the real” (objects) were possible. The “objectified” tone of the seemingly “neutral” and “scientifically” derived domains (HOPE, SPIRIT, FICA, etc.) presents itself as though bypassing cultural or ritual heritage of the questioning itself (Puchalski & Romer, 2000). Yet, the list has a conceptual etiology, even if secret. In the effacement of subjectivity (the list alleged as an objective, universal device reflecting “real”, extra-linguistic facts), “asyndeton disguises an epistemology which claims mastery over a reality which in fact derives from, and seeks to affirm, the supremacy of the knowing subject” (Pickstock, 1997, p. 97). In accepting the Cartesian epistemology, biomedicine mistakes the effective heuristics of its taxonomy and nosolgy for an ontology: an ontology of disease as a “real” entity with existence of its own and predicated on defining the patient against the anatomic or pathologic “data.” The other is now fundamentally closed (since included in the spatialized epistemological taxonomy of disease) and prohibited from displaying local details, difference or participating in mystery (Frank, 2001). Furthermore, the linear “order” imposed on the other by the choice of the organizing catalogue eventually achieves the opposite: it induces the medical practitioner to engage in a private hermeneutic activity attempting to re-establish coherence lost in the creation and distribution of the asyndetic list. The ultimate outcome of this individual search for coherence has been documented in section III of this article.

A sub-specialty of biomedicine, palliative medicine, has appropriated the process of representation and mathesis, privileging objective data (Heidegger, 1977). The legitimate locus of depth and uncertainty had been largely lost, as the project of locating exact, transparent truths has not tolerated meditation on mystery. That this process has effectively entered contemporary medical practice and its research methods is probably best echoed in the purely rhetorical protests of individual physicians: “… the other person cannot be thematized, objectified, or totally defined. He or she is …. infinitely foreign” (Komesaroff, 2001, p. 326). Lastly, complementing its historically shaped epistemology, the circumstances of emergence of the palliative medicine field in the United States have linked it with these concerns and methods of bioethics which are particularly close to the “common law's reliance on fact-specific, incremental reasoning” (Capron, 1994). How do even the most advanced communication techniques, which nevertheless remain predicated on fact-specific, incremental reasoning, inform the care we take of dying patients? As will be seen shortly, death is not an experience or event and cannot be cogently spoken of within the biomedically-preferred, representational language referring to itemized, testable contents, regardless of the degree of emphasis put on the “psychosocial” or “spiritual” “domains.”

We have seen that in spite of failure to question the ontological status of the term “death” in the palliative scholarship, the field's epistemological commitments are in fact easily discernible. If biomedicine and its practitioners are indeed “standard-bearers of Western metaphysics” (Krakauer, 1998, p. 535), then one may expect that biomedicine does presuppose, what being is. Surely then, physicians, particularly those working with patients at the end of life, must have an operative understanding of non-being, a specific notion of absence and death. Yet, clear elucidation of these notions has not been achieved in the palliative medicine scholarship. Thus, the general deficiency, that of absence of a conceptual analysis of death, accompanies a specific one, that which privileges bifurcating, representational discourse and language for communicating and interpreting clinically relevant phenomena at the end of life. In the next section it is our task to determine the margins and properties of the term “death” that the biomedicine predicated on the mathesis of the Ramist/Cartesian model allows. If, according to this epistemology, death can be understood, palliative medicine and its communication models do not need revisions. If, however, the opposite is the case, an alternative approach is called for. ¹

A Pre-Phenomenological and Analytical Critiques

In the following sections I will follow various tropes of Western metaphysics to discern biomedicine's implicit understanding of death. Anterior to metaphysic or eschatological commitments and for the purpose of initial term clarifications, the word “death” may refer to: (D1) the “event” of death in a sense of a concurrently identifiable terminus, or (D2) the condition characteristic of the period leading to cessation of life, or (D3) that which relates to one's no longer being, a no-longer-being.

The “event” of death (D1) is comprehensible as a caesura, a demarcation that might be gazed only from either side of what it divides, and not from within. There is neither controversy in retrospectively pronouncing that death had occurred, nor stating prospectively that death will occur at some point. This certainty is unattainable, however, both for the purpose of precise (rather than probabilistic) prognostication, and concurrently for a demonstration of the “moment” of death. Furthermore, death cannot be medically defined on its own terms. Indeed, all physiological definitions are formulated in a negative voice, invoking absence of something else, a compromise of a vital function. Consequently, an attempt to define the event of death amounts to a search for a culturally acceptable consensus on the criterion of death. This project, however, is unlikely to reach a solution (Wijdicks, 2001) as illustrated by the perennial difficulty with non-controversial adjudication in real-life arguments whether a given medical process amounts to preservation of life or prolongation of death (Council on Ethical and Judicial Affairs, 1999). As a result, defining the event of death is of negligible impact on communication and care at the end of life, the organ procurement debate, or other intricate controversies notwithstanding.

To understand death as a period of progressive disability and discomfort (D2), is to acknowledge precisely that, living with disability and discomfort. This period of more or less compromised living is “dying” only inasmuch as it is affected by an ingress or anticipation of what is to follow when life is no longer, the death itself. Hence of its own standing, dying in this second sense remains unequivocally living as resolutely testified to by the “not dead yet” movement. The disabilities characteristic of this period are proper objects of medical attention. For example, psychiatrists attend to affective cognitive defects and anesthesiologists manage pain. There may even be a need for a symptomatologist, a doctor expertly attending to physical and psychosocial maladies. As long as death itself does not enter the range of concerns or conceptual presuppositions needed for such a symptomatic management, caring for disabled patients with life-threatening illnesses does not require elucidation of the ontological status of death. Yet, we are rightly advised that palliative care doctors provide more than symptom management. We are to “remind [other] doctors that death exists” (Arnold, 2002, p. 810). We are to broaden the scope of the medical practice to respond to our patients' suffering and concerns about death. Thus the second definition does not adequately reflect the range of concerns most characteristic for palliative medicine, while focusing on disability rather than death.

Hence of the three possible meanings, only the third one ([D3] one's no longer being, a no-longer-being) can be taken as a connotation of the word “death”. A cursory analysis of the limits of possibly thinking of death in this sense, however, reveals either an inherent contradiction or a need to depart from the rules of public language.

First, if the thinking is to mean, imagining one's own death, then one has to simultaneously agree that (1) one is not, as this is the theme and object of the image of death, and (2) one is, as one is the imagining subject. This lends itself to a contradiction of terms.

If the thinking is to mean some kind of experiencing one's own death, then one has to agree that (1) one has experienced death and (2) one subsequently “returned” from the dead to report one's experience. This, however, if applied to one's own earthly personal experience, contradicts the accepted understanding of death as an event that is not reversible in the embodied sense.

If the thinking of death were to focus on another's death, then the limitations posed by logical contradiction or material impossibility still apply. Then, if one were to claim that one knows anything at all about another's death, one would also have to claim a more authentic knowledge of another's death than the dying person herself could possibly have of her own death. Is there a more Byzantine excess of arrogance than to claim that an exterior knowledge of dying is superior to that available to the dying one? Such a posture is absurd, for as Heidegger has noted (1985), if there is anything which is irreplaceably private and one's own, it is one's own death. To observe, record, mourn, or give witness to another's death is certainly possible. To ease discomfort and assist with disability surely rises to an obligation. To claim a superiority of an external insight, however, is to parasitize on the other's tissue of loss and pain.

Finally, as a permutation of thinking of one's own death, one may engage in the practice of induction and follow a syllogism dictating that every human is mortal, and since one is human, hence one is mortal. The cognitive and affective futility of such a grammatical exercise has been evident at least since the The Death of Ivan Ilyich (Tolstoy, 1981). Heidegger sums it up by inscribing inauthentic, “idle talk” of “the they” on the syllogistic formulae:

the explication of everyday being-toward-death stayed with the idle talk of the they: one also dies sometime, but for the time being not yet…. One says that death certainly comes, but not right away. With this “but…”, the they denies that death is certain. (Heidegger, 1996, pp. 236, 238)

These three approaches (thinking or imagining death of mine, of yours, or of an anonymous other) signal defiance rather than compliance with the task of understanding death.

The intuition of silence and evasion of thought surrounding non-being and death underlies multiple re-formulations of a basic theme offered throughout Western metaphysics. The Parmenidean dictum that, that which is not cannot be thought of, probably represents the first, still-preserved articulation of the theme. ² Epicurus (1966) reframed the difficulty inherent in thinking of death in anthropological terms: “Death […] the most awful of evils, is nothing to us, seeing that, when we are, death is not come, and, when death is come, we are not.” Lucretius (1994), a post-Epicurean stoic, articulated the experiential argument by focusing a symmetric gaze on the events before birth and after death, both equally inaccessible to an experience: “Look back in time […] before our birth. In this way Nature holds before our eyes the mirror of our future after death.”

The Epicurean intuition, as will be proposed shortly, propels an argument still remaining at the crossroad of modern philosophy and so inscribed on the present-day biomedicine. For upon consideration, the central epistemological formula of Descartes turns out to be a permutation of the fundamental impossibility of thinking of death. In a perennially rehearsed argument, Descartes (1968) resolved to pretend that nothing which ever entered his mind “was any more true than the illusions” of his dreams. Doubting everything, however, he reasoned that the thoughts must be someone's, the thinking subject's in particular, and so he concluded, “I think, therefore, I am.” This reasoning will be looked at more closely.

Descartes started with two epistemological premises, that one should (1) doubt, and for that matter, doubt everything, and (2) admit as true only those conclusions which emerge as “clear and distinct” from the initial scrutiny of doubting. One discerns that doubting, a specific kind of thinking, must entail some precognitive insight (i.e., an intuition of an ongoing vital/thought process), a formal process with its own rules, or both. Certainly, the naïve realization of one's own continuing mental activity may lead to an unshakable conviction of the “I” as the subject of his/her thinking. According to Descartes' premise, however, in order to achieve an adequate epistemological rigor, one must doubt all spontaneous insights, hence including the naïve perceptions of one's own existence. It follows that reading Descartes leads us to consideration of the formal aspects of thought as the object of the initial doubt and subsequent clear and distinct convictions. Here one arrives at a lucidly stated Cartesian doubt: either, “I am thinking that I do not exist and I am wrong” (Proposition I), or “I am thinking that I do not exist and I am correct” (Proposition II).

If the Cartesian epistemic hesitancy is to be preserved, it follows that the first term of this exclusive alternative cannot be taken as self-evident. No prior rules of logical valuation available, it certainly cannot be said to be true or false. Neither could it be proven from an inference that there must be a subject to a thinking, in particular an “I.” Such a conclusion would have to follow from a more general and self-evident rule that thoughts are generated and perceived by subjects. Obviously, there is nothing clear and distinct about such a judgment. Following Hobbes, we know that “I think” amounts to a mere “there is matter which can think.” A veracious Cartesian doubt suspends beliefs about subjects who think. Accordingly, occurrence of thinking proves nothing about the, as it turns out, presupposed subjects. Unable to arrive at a clear and distinct conclusion in regard to the first (Proposition I) term, can one discover something self-evident in the second (Proposition II) term? Indeed, it is a consideration of the second and not the first term, which founds Cartesian sum and leads to a conclusion clear and distinct, if not acknowledged. Just like the first, the second term arrives with hesitancy. Its logical valuation, ridden with doubt, can neither be said to be false nor true. Yet at its core, there resides certainty: to think one's own non-existence is certainly not possible. Within the limits of Cartesian epistemology, the second term, just like the first one, does not permit logical operations. However, unlike the first one, the second term is impossible to think. A rigorous thought of one's own non-existence (i.e., the thought of one's own non-being) is impossible. One cannot think it. One runs into a wall, clear and distinct. Here we may note that the thought of one's own death is no different than the thought of one's own non-existence. Indeed, just as one cannot think that one does not exist, so one cannot rigorously think of one's own death. Here the journey of doubting ends, since the only way to think at all is to think that one does exist. The Cartesian maxim derives precisely from the hidden impossibility of thinking of one's own death. Only in the supremely clear and distinct exclusion of the contrary term, the thought of one's existence becomes clear and distinct while observing Descartes' epistemic premises.

As I have tried to show at the beginning of Section IV, modern biomedicine (Krakauer, 1998) prescribes Western metaphysics inclusive of the Epicurean therapy and Cartesian epistemology. Nothing but an impassible silence (one may argue, nothing as the impassible silence [Cunningham, 2002]) remains: “death is wholly other from life and must be respected with silence since no language can describe it” (Wittgenstein, 2001). In the preface to the Tractatus, Wittgenstein (2001) says: “The whole sense of the book might be summed up in the following words: what can be said at all can be said clearly and what we cannot talk about we must consign to silence.” How does one know whether death belongs to that which can or cannot be talked about, however? Death is not an event in the world for the person whose death is at stake. Death is the end of the world: “[In death] the world does not change, but ceases. (6.431) Death is not an event of life. Death is not lived through.” (6.4311). Yet since language pictures facts (2.1), sentences point to states of affairs of the demonstrable world, which we live in. (4.21). Hence, death as the end of possibility of discerning elemental facts or states of affairs must be consigned to silence, a directive of not only logical but also ethical character (Shields, 1993, p. 10).

B Phenomenological Analysis and Its Critique

If the pre-phenomenological epistemology effectively proscribes a cogent understanding of death, one may ask how phenomenological analysis treats this aporia. In contrast to his predecessors, Heidegger avoids positing a Cartesian or Kantian ego, a knower defined against the world. He does not consider death as an experience, an event (or a non-event), a general or empirical proposition. Rather, he develops a new method of existential analysis that is purported to provide a concept of death by the analysis of the lived experience of Da-sein, hence not committing itself to traditional epistemological presuppositions. In this movement, the existential analysis precedes the biological, psychological, or sociological inquiry, and subsequently founds the possibility of those secondary discourses. Most importantly, in regard to the argument presented in this article, by employing the methods of existential analysis Heidegger avoids the contradiction of being and not-being inherent in thinking one's own death. A Heideggerian project, nevertheless, is a subject of further critique, most clearly articulated by Derrida.

Da-sein, the central concept of existential analysis, denotes a specific mode of being, accessible only through a lived, individual experience. Da‐sein is always in-the-world with others, among various possibilities, most importantly Da-sein's own possibility. The anthropo-medical problematic fails to appreciate the fundamental characteristics of Da-sein as possibility (i.e., the grounding in its own possibility). Indeed, unlike the objects of empiric inquiry, Da-sein cannot be put like a demonstrable object in front of an individual and measured, described, or processed. Yet, analysis of self and its tasks frequently proceeds in exactly this fashion. Such misappropriation of Da-sein, and consequently death, leads to speaking nonsense, arising from arbitrary delimitations which ignore the nature of Da-sein.

Thinking death means thinking possibility. “[D]eath is the ownmost possibility of Da-sein's” (Heidegger, 1996. p. 243). Death is a constant and most proper imminence. Da-sein unveils and stands before death as its most essential possibility. Da-sein awaits itself in death. Hence, death is the possibility of impossibility. This is according to Heidegger, where the concept of death starts. That is where one needs to start asking questions intended to open the problematic of death for the derivative disciplines of history, medicine, or anthropology. How else could one think death broadly enough to provide the context for thinking of death?

Indeed, death is not simply an impossibility of possibility or an impossibility of being able to. Such thinking would lead us back to the impossibility of thinking about death altogether as demonstrated in the analysis of the contradiction inherent in the term “my death.” Heidegger confirms this by saying, “The nearest nearness of being-toward-death as possibility is as far removed as possible from anything real. […] As possibility, death gives Da‐sein nothing to ‘be actualized’ and nothing which it itself could be as something real.” (Heidegger, 1996, p. 242). How does one think of death then? How does one speak of death in a coherent fashion if the theme of thought is to be impossibility? If the subject of the possibility that establishes truth by guaranteeing Da-sein is in fact certain irreducible impossibility, how can this impossible intuition be testified to and spoken of?

Heidegger (1996, p. 240) maintains that phenomenal justification for the concept of authentic being-toward-death can be “taken from Da-sein itself.” Da-sein is “not yet;” it is outstanding. The “not yet” is wholly other, without measure and incalculable. This “not yet” is different from what is simply ahead, incomplete but essentially attainable and homogeneous with what is now and known. “Death as something possible is not a possible thing at hand or objectively present” (Heidegger, 1996, p. 241). Existential analysis of Da-sein reveals that being-toward-death cannot take the form of management of distress or facilitation of coping strategies aimed at actualization of possibilities engendering “dying well.” Similarly, expecting death appropriates the possibility as possibility and colonizes the being-toward-possibility with understanding and possession. Both these attitudes are characteristic of the “they.” A subtler project of mindful contemplation, dwelling near the end in its possibility, still brings about an actual thinking about death and transfers it into the realm of possible or actual: “[I]f being-toward-death is not meant as an ‘actualization’ of death, neither can it mean to dwell near the end in its possibility. This kind of behavior would amount to ‘thinking about death’” (Heidegger, 1996, p. 241).

After giving the series of negative parameters, Heidegger deploys existential analysis to arrive at a positive notion of being-toward-death:

Anticipation reveals to Da-sein its lostness in the they-self, and brings it face to face with the possibility to be itself, primarily unsupported by concern taking care of things, but to be itself in passionate anxious freedom toward death which is free of the illusions of the they, factical and certain of itself (Heidegger 1996, p. 245)…. The attitude of anticipation in the passionate freedom toward death is the most proper, imminent possibility of existence and amounts to a freedom to give itself up. (Heidegger, 1996, pp. 243–264)

Remarkably more successful than the previous philosophical attempts in cogently opening the problematic of death, the existential analysis is not immune from critique on its own ground, however. In a penetrating analysis, Derrida (1993) departs from Heidegger, who suggested that the possibility of impossibility could be testified to by Da-sein in the process of authentic life (i.e., that the possibility appears as such and hence can be rigorously testified to). Derrida asks a critical question of how such a possibility of impossibility could appear at all. Drawing on Heidegger's own admission that the existential understanding of death approximates a notion of impossibility of existence at all, Derrida denies cogency of a rigorous analysis of death. ³ In a way surprisingly reminiscent of Wittgenstein, Derrida concludes: “it is nothing less than the end of the world with each death, each time” (Derrida, 1993, p. 75). Against the existential hope, death returns as a nonaccess and the “ultimate aporia”(Derrida, 1993, p. 56), paradoxically demonstrating not only “existlessness” of the metaphysic tradition (Krakauer, 1998) and the allied health technology characteristic of modern biomedicine, but also of the phenomenological and deconstructive projects themselves.

V DISCUSSION

What have care-providers learned from their patients? The recurrent notes of silence and disorientation testify to an anomic character of death. The impending threat of disintegration inscribes on the body an agonizing integrity irreducible to fragmentary biomedical or psychosocial facts. Even when equipped with a retrospective gaze, “We don't get it” (Sontag, 2003). Have we come to appreciate that mystery defines rather than complicates the practice of palliative medicine?

The stories of patients facing death signal a common thread: comprehension and speech, whether seeking consolation or understanding, lose their expected relevance. “Nobody understands.” Trying to explain this irrefutable diagnosis by pointing to deficiencies in medical or humanistic skills, one explains it away, by colonizing the unspeakable pain with biomedical, bioethical or narrative devices alike (Ladriere, 2001). How exactly is one to understand the cry of “O God, O God, O God,” while following the tripartite models of clinical communication and empathy? Nobody can understand, for as long as implicated in the discursive, representational perspective, the dying other must, paradoxically, remain ambiguous and irreducible, thus “infinitely foreign” (Komesaroff, 2001). Yet, if nobody understands, how are we to proceed to counseling or effective intervention?

Palliative caregivers and scholars recognize the unique challenge facing patients at the end of life. Whether advocating care for “whole human persons,” acknowledging “ministering to suffering,” or “preserving dignity,” we rightly, if only implicitly acknowledge the unsaid and unspeakable. Expressed in a voice of silence, other times lamentation or praise (Yedidia & MacGregor, 2001), the demands opened by suffering of the other, however, cannot be adequately formalized according to predetermined epistemological schemata. Yet, by devising ever more Byzantine communication formats, we reproduce in the clinical practice preexisting epistemological categories and implicate ourselves in a “category fallacy” (Mezzich et al., 1999). Thereby, we are inclined to believe that the radical mystery of death, rather than leading to an encounter with an impassible occlusion, calls for further refinement of the communication process, which rests on a possibility of predication and references to discrete, knowable facts and mental states. According to such logic, the critical occlusion of understanding is ultimately trivial, or alternatively clinicians can bypass it, not unlike atherosclerotic occlusions bypassed in cardiothoracic procedures. This is not the case, however, as the stricture of understanding signals mystery rather than a technical conundrum. Consequently, the presently favored language of patient-physician relationship intended to improve clinical communication in order to facilitate “understanding” or “coping,” leads to an impasse rather than to a desired “resolution.” No matter how many new guidelines or curricula on communication are added, death escapes the devices recommended by scholarship in the patient-physician communication: it is impossible to comprehend, to speak coherently about, or to empathically resonate with a patient within the grammar of biomedicine. Analysis derived from philosophical sources corroborates the clinically derived conclusion.

Reading of the phrase “my death” according to philosophical rigor leads to a figure of aporia. Arriving from an embodied, clinical realm, Steve's and other patients' speech signal recognition of a place where the dilemma is not about how to solve or even state a problem, rather, it is a place where problems cannot be constituted, a locus of paralysis of thought. Death instantiates a unique occlusion arising from the incomprehensibility and imperceptibility of death. According to epistemologies prescribed by modern bio-medicine, death, the possibility of impossibility, is best seen as an aporia rather than a logical antinomy or a dialectic dyad. It invites a thought of what is not, a no-longer-being, an impossibility resting on the impossibility of thinking itself. It is the name of a secret, “the common name for a proper name without name,” “so that language about death is nothing but the long history of a secret society” (Derrida, 1993, p. 74), a language which exceeds linguistic determinations. Such is the fundamental phenomenon defining our field from the phenomenological and analytic perspectives: the locus of palliative care is most properly aporetic, for there is no name for death nor expression. Yet there might be a recourse. Two preeminent, secular philosophers who, each in his own way, defined the history of philosophical questioning in the 20^th century, share convergent and surprising insights on the limitations of and possibilities for thought concerning death. Jacques Derrida invokes a “witness” of “the culture characterized by the so-called religions of the Book” opening “double inclusion” (which is also a trans-contamination) of contemporary strands of thought:

neither the language nor the process of [the phenomenological] analysis of death is possible without the Christian experience, indeed, the Judeo-Christiano-Islamic experience of death to which the analysis testifies. […] The same could be said for Freud's and Levinas's thought, mutatis mutandis (Derrida, 1993, p. 80).

In a similar spirit, Hans Georg Gadamer (1996) writes:

If it is true that even this scientific Enlightenment, like that of the ancient world, finds its limit in the ungraspability of death, then it remains true that the horizon of questioning within which thought can approach the enigma of death at all is circumscribed by doctrines of salvation. (p. 69)

Indeed, even though there is no name for death nor expression, there might be hope and abundance.

Reconstructed within a representational and phenomenological language alike, the voice of loss and agony appears to be arriving from behind an aporetic occlusion. If, however, there is no name for death nor expression, the same voice might be more properly said to participate in mystery than to signal an impassible aporia. Consequently, one may see that confronted with the mystery of death, we cannot solve it, because even though arriving from a formed reality, it carries certain excess which resists even most exhaustive descriptions or dialectic analyses. Given ontologically rather than epistemologically (Milbank, 1995), mystery is radically different from empirical, spatialized data (Pickstock, 1997) privileged by the medical expertise. At the same time, precisely because it is given ontologically, the excess inherent in mystery opens new possibilities for understanding the soul of palliation (Milbank, 2003).

VI CONCLUSION AND NEW DIRECTIONS

I have intended to demonstrate that, due to the epistemological commitments of the biomedical language, death resists understanding prescribed in the current patient-physician communication models. Furthermore, the Derridean critique of an alternative ontology offered by the existential analysis of death has revealed an impassable aporia. It appears that caring for the dying necessitates inclusion of language commensurate with the phenomenon of aporetic occlusion. To start negotiating this occlusion is to accept a play of double propositions and shadows, and eventually face an underlying demand for silence. ⁴ Hoping to open rather than conclude this discussion, we must note here that many of the presently recommended remedies exemplified in the search for clinically efficient narrative ethics (Charon et al., 1995) or escalation of humanistic skills through employment of literary interpretation remain insufficient. We should expect such an insufficiency since even most artful “keeping the secret of suffering” (Schweizer, 1997) by lamenting wounds through any form of poetics of un-saying (Blanchot, 1995) can only redouble the nihilistic gestures (Rose, 1995) of modern necrophobia and post-modern necrophilia (Pickstock, 1997), respectively. However, without denying or eulogizing death, a radically subversive, analogical middle voice is possible. Against the representational language of biomedicine, the analogical grammar indicates that mystery rather than aporia maps our ill and healthy bodies on to our social and professional bodies, and on to our ecclesial bodies (Ward, 2000) that may then freely participate in the silence as much as in the mysterious abundance of kenosis. And so it is the analogical language that permits a genuinely apophatic voice (Turner, 1999). Not the post-modern speechlessness or the modern “ineffability,” but a sincere interplay of silence and affirmation informed by aesthetics and ethics of reciprocity (Milbank, 1995) of the visible and the invisible (Milbank, 2003) may allow us to respond to the dying other. Yet to speak cogently of reciprocity in the face of impending death requires that we participate in the ecstatic surrender-of-being (Von Balthasar, 1999). A surrender of being that is not necrophiliac can, nevertheless, be humanly read, palpated, and offered to each other through the otherness of being and non-being, a conjoined otherness of our bodies inscribed on the shared body of the kenotic gift (Okon, 2004). Offering each other the experience of caring and dying, being and non-being, we can cogently claim living in each other's truth (Pellegrino, 2001), ⁵ while rightly claiming disclosure of the ontological difference. Subsequently, we allow the voice of testimonial silence, lamentation, and wonder to return efficacious by repeating the interplay of the apophatic silence and affirmation through a deliberate juxtaposition (Bouchard, 1999) of the vigilant offering of one to another, with meticulous clinical attendance.

Occasionally, physicians are willing to acknowledge similar themes. Eric Cassell writes that:

One needs to listen to what is said and unsaid, […] and stay silent inside and out (beyond small talk). In doing this, one begins to know something about the patient, still unspoken but enough for the care of many sick patients. Now comes the hard part: learning to be simply open in the presence of the patient […] This stance is not something you do as much as something you are. Properly done, no one but you will know exactly what is happening, not even the patients. (Cassell, 1999, p. 534)

If the physician is to inform the care offered to a dying patient by staying “silent inside and out,” then the clinical dialog, must become fundamentally inclusive of the genuinely apophatic voice. Otherwise, the clinical practice of empathy and patient-physician communication will amount to futile verbalizations: “the voiceless cry […] which is addressed to no one and which no one receives” (Blanchot, 1995, p. 51), “offering nothing but false hope; jollying people along” (Bradshaw, 1996, p. 417). When the apophatic demand posed by death of the other is misunderstood or outright ignored, the dying of our patients cannot be properly witnessed and, indeed, “nobody understands.”

Notes

1. One may pragmatically question whether physicians need to include death within the range of their professional concerns. According to the strict “curative/restorative” paradigm, doctors rarely, if ever, need to talk or counsel about death. Yet, in caring for patients with life-threatening illnesses, to disallow relevance of death would defy the fundamental mission of the palliative field (Arnold, 2002; Davis et al., 2002; Strang and Strang, 2002). Once the term “death” is allowed, however, it becomes, along with the mental and physical states of dying patients, a legitimate and, indeed, proper subject of concern for palliative medicine. Speaking on the related concepts of disease and suffering, Cassell summarized this point, “when doctors dismiss theory, they often do things with unhappy results because they do not really know why they are doing them” (Cassell, 1991).

2. In Plato's Sophist (Soph. 238 c) the Parmenidean position is summed up: “You understand then that it is really impossible to speak of not-being or to say anything about it or to conceive it by itself, but it is inconceivable, not to be spoken of or mentioned, and irrational” (http://history.hanover.edu/texts/presoc/parmends.htm#commentary, accessed 11/19/2004).

3. The critique arises from a sentence of Being and Time (Heidegger, 1996, p. 242) which suggests that, “The more clearly this possibility [possibility of impossibility which is as far removed as possible from anything real] is understood, the more purely does understanding penetrate to it as the possibility of the impossibility of existence in general” (or “at all,” according to Derrida's reading of Heidegger's ‘überhaupt’). Given the “as,” the possibility of impossibility as the possibility of impossibility of existence in general, Derrida rightly asks how could such a possibility of impossibility appear at all. If this possibility entails impossibility of existence altogether, would not the possibility disappear before ever appearing, making it impossible to discern, testify to, and most importantly integrate as an opening into an authentic life? Furthermore, is there a difference between possibility and impossibility of appearing as such of the possibility of impossibility (Derrida, 1993, p. 75)? Heidegger obviously admits only this first possibility, which unfolds itself in the passionate and anxious freedom, the foundation of Da-sein. Yet, Derrida will note: “If the impossibility of the ‘as such’ is indeed the impossibility of the ‘as such,’ it also cannot appear as such.” Possibility of impossibility as such is, indeed, impossible. No man has access to death; death signifies nonaccess. No relation to death, as such, is possible. The “as such,” a critical phenomenological principle (Derrida, 1993, p. 78) necessary to speak of dying, testify to dying, or share in language about dying, ruins the possibility of a rigorous analysis of death.

4. Late Wittgenstein (1998) noted that we

• wrongly expect […] an explanation, whereas the solution of the difficulty is a description, if we give it the right place in our considerations. If we dwell upon it, and do not try to get beyond it. The difficulty here is: to stop. I owe this citation to Solbakk (2004). Similarly, when a physician decides to challenge the discursive, representational process, “in responding to the call of the other,” he divests himself “of intentionality and rational calculations” (Komesaroff, 2001) on clinical grounds. Divested of intentionality and rational calculations, responding to the suffering other unfolds from silence and opening to the mystery of another person.

5. It is in this gift of being in vigilance to each other (LeGuin, 1990) that our representational thinking breaks free to “the thinking that responds and recalls” (Heidegger, 1971), responds to the other and recalls a mysterious analogy: death, supremely endured and offered through a figure of kenotic gift, can be lived in being reconciled, and, hence for now, lived only in embodied communities formed by the tradition of caring and releasing. There, a proportionate language of testimonial silence, lamentation, and wonder may return efficacious.