End-of-Life Care, Pain, and the Problem of Intolerable Suffering

CHAPTER EIGHT

End-of-Life Care, Pain, and the Problem of Intolerable Suffering Jennifer L. Gibson*, x *University of Toronto Joint Centre for Bioethics x Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto E-mail: [email protected]

Contents 1. Introduction 2. Pain, Suffering, and Pain-Related Suffering at the End of Life 2.1 Pain 2.2 Suffering 2.3 Pain and Suffering at the End of Life 2.3.1 Suffering and Medical Assistance in Dying

151 152 152 153 154 155

2.4 The Problem of Intolerable or Unbearable Suffering

155

2.4.1 Definition of Intolerable Suffering 2.4.2 Recognizing Intolerable Suffering 2.4.3 Responding to Intolerable Suffering

157 159 159

3. Illness and the Enigma of Health 3.1 Gadamer’s Definition of Illness 3.2 The Role of the Physician 3.3 Therapeutic Dialogue and the Problem of Intolerable Suffering 4. Conclusion Acknowledgements References Further Reading

161 161 162 164 166 167 167 170

1. INTRODUCTION Patients who have life-limiting illnesses often experience pain, suffering, and pain-related suffering. Although pain and suffering may accompany illness, they are distinct phenomena and present unique challenges for health care providers who care for ill and dying patients. Pain management may be sufficient to alleviate the suffering associated with pain in some individuals. In addition to tremendous physical suffering, an Developments in Neuroethics and Bioethics, Volume 1 ISSN 2589-2959 https://doi.org/10.1016/bs.dnb.2018.08.008

© 2018 Elsevier Inc. All rights reserved.

151

j

152

Jennifer L. Gibson

individual’s suffering at the end of life may have less to do with physiological causes or the physical symptoms of illness than with more profound social or existential concerns unique to the individual. The subjective nature of suffering means that it may be difficult to recognize, assess, and address in clinical practice. Unlike other symptoms, such as dyspnea or fever, which may be amenable to objective assessment and standardization of practice, suffering is unique to the individual. Suffering also depends on the meaning that individuals ascribe to their symptoms and to the illness itself. Intolerable suffering, which is a common clinical indication for palliative sedation and euthanasia, presents particular conceptual and practical uncertainties with significant ethical implications for health care providers caring for patients at the end of life. In this chapter, I argue that these uncertainties offer productive opportunities to enrich the patient-provider relationship and respond to intolerable or unbearable suffering in the context of end-of-life care. I draw from HansGeorg Gadamer’s concept of a fusion of horizons between patient and health care provider to reframe the problem of suffering and its uncertainties. I argue that this re-framing opens a dialogue surrounding the patient’s suffering. I propose that the therapeutic dialogue, which the pursuit of mutual understanding entails, creates the possibility of alleviating the patient’s suffering by restoring their sense of intactness and integrity of personhood even in the face of death.

2. PAIN, SUFFERING, AND PAIN-RELATED SUFFERING AT THE END OF LIFE 2.1 Pain Pain is defined as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage” (International Association for the Study of Pain, 2010). An important element of this definition is that pain is subjectively experienced. The individual experience of pain and pain-related suffering is wide-ranging; they are akin to other sensory experiences that present to consciousness. For example, human beings all differ in how we experience sights, sounds, smells, and flavours, and we vary in the emotions evoked by those sensations. Although acute pain experiences can vary widely in a healthy state, it is important to recognize that pain can be a major and inescapable component that accompanies life-limiting diseases such as

Pain, Intolerable Suffering, and End-of-Life Care

153

cancer, AIDS, multiple sclerosis, chronic obstructive pulmonary disease, and organ failure.

2.2 Suffering The relief of pain and suffering has been considered a core value of the medical profession since antiquity. Although pain may be a cause of suffering, the experience of suffering is distinct from the experience of pain. Indeed, many people are able to live with pain, so it may be incorrect to assume their level of suffering. Whereas pain is an unpleasant bodily sensation experienced because of an actual or potential disease or injury, suffering is “a response of the whole person, which takes into account both the subjective experience itself (in the narrow sense) and its meaning and significance [to the individual]” (Sumner, 1999, p. 104). Suffering, as defined by Cassell (1999), is a “specific state of distress that occurs when the intactness or integrity of the person is threatened or disrupted” (p. 532). Suffering is thus defined by its phenomenological qualities. Suffering can influence the individual’s perception of the future or future events; anticipated suffering from uncontrolled pain can be an immense source of anxiety (Kolva, Rosenfeld, Pessin, Breitbar, & Brescia, 2011). A sense of loss or threat of loss is a common feature of suffering, particularly among individuals with life-threatening or life-limiting illnesses (Boston, Bruch, & Schreiber, 2011). The medical anthropologist Kleinman (1992) suggests that human suffering is a moral experience that occurs when an individual perceives pain to threaten their participation in everyday activities, but then resists that threat. Kleinman’s concept of resistance is similar to Cassell’s threat of intactness and integrity of the person. While Cassell, Sumner, and others describe suffering as a subjective individual experience, Kleinman describes suffering as traversing afflictions of the body, the spirit, and the community. Kleinman considers suffering to be “both an existential universal of human conditions and a form of practical and, therefore, novel experience that undergoes great cultural elaboration in distinctive local worlds” (p. 174). Since the experience of pain is dependent on social, cultural, and political factors, these factors also shape the experience of suffering. Pain is not a necessary condition for suffering, but suffering can exacerbate the experience of pain. The palliative and hospice care pioneer Cicely Saunders developed the concept of total pain in the 1960s to argue that care of the dying must be holistic as suffering is not reducible to pain; suffering includes physical, psychological, social, and spiritual dimensions

154

Jennifer L. Gibson

(Clark, 1999). Pain-related suffering does indeed occur, and health care providers ought to assess for it (Turk & Wilson, 2009). Drawing a meaningful line between pain and suffering is challenging. The subjective nature of suffering means that it may be difficult for an observer to recognize and understand. For end of life health care providers, it may also be difficult to objectively assess and address suffering in their patients. Some authors suggest that due to the subjective nature of suffering, it is not possible for another person to assess it objectively (e.g., Carnevale, 2009). This tension has implications for how physicians and other health professionals approach their therapeutic role. As Coulehan (2009) notes, “since suffering is an existential state that does not necessarily parallel physical or emotional states, to relieve suffering physicians cannot rely solely on knowledge and skills that address physiological dysfunction. Rather, they must learn to engage the patient at an existential level” (p. 587). If this engagement does not happen, it may lead to what Kuhl (2005) defines as iatrogenic suffering; suffering, as a kind of unintentional harm, that originates with the health care provider. These discussions about suffering are associated with the concept of dignity, particularly in discussions of end-oflife and palliative care. In such contexts, and consistent with the established ends of medicine, physicians have a duty to relieve patients’ pain and suffering to help restore a sense of dignity (Kuhl, 2005).

2.3 Pain and Suffering at the End of Life Palliative care is the field of clinical practice that seeks as its primary aim “to relieve suffering and to improve the quality of life of people and their families and carers facing life threatening and life limiting illness” (WHPCA, 2018). A goal of palliative care may include the prevention of suffering as well (Pastrana, et al., 2008). A number of studies have described beneficial outcomes of palliative care, including improved pain and symptom management, improved quality of life and fewer depressive symptoms (Bakitas et al., 2009; Temel, et al., 2010; Zimmerman et al., 2014), fewer visits to hospital (Barbera et al., 2010; Seow, et al., 2014), and better patient and caregiver satisfaction (El-Jawahri, Greer, & Temel, 2011; Zimmerman, et al., 2016). Palliative care is recognized as a critical element of universal health coverage. However, the World Health Organization reports that only 14% of people who need palliative care actually receive it worldwide (WHO, 2018). Several recent reports underline the urgent need for expanded global access to palliative care, including pain medications and trained palliative care providers (Knaul, et al., 2018; WHO, 2014).

Pain, Intolerable Suffering, and End-of-Life Care

155

2.3.1 Suffering and Medical Assistance in Dying Voluntary active euthanasia, sometimes called medical assistance in dying (MAID), physician-assisted death, or physician-assisted suicide depending on the jurisdiction, may also be an appropriate response to pain and suffering at the end of life. Several countries have removed criminal prohibitions against assisted suicide under strictly defined circumstances, thus enabling an individual with a serious medical condition that is refractory to alternative treatments to seek medical assistance in ending their lives. Experience in some jurisdictions indicates that such patients are often receiving palliative care concurrent with the request for euthanasia. While not all patient requests for a hastened death are requests to die, many requests have origins in the patient’s suffering (Branigan, 2015). In their study of 189 patients with end-stage cancer, Chochinov et al. (2005) found that the will to live was significantly correlated with existential, psychological, and social sources of distress, and that existential factors, such as hopelessness (losing the sense of meaning or purpose), loss of dignity (losing the sense of essence or personhood or the sense that these qualities are no longer valued or appreciated) and a sense of being a burden to others were most influential on participants’ will to live. A recurring theme of lossdof independence, of functionality, of control, of social role, of social connection, of presence in their own livesdpervades studies of individuals seeking euthanasia (Dees, Vernooij-Dassen, Dekkers, Vissers, & van Weel, 2011; Ganzini, Goy, & Dobscha, 2008; Pearlman, et al., 2005). Dees et al. (2011). explored the concept of unbearable suffering from the perspective of patients who requested euthanasia and physician-assisted suicide in the Netherlands. Although uncontrollable pain was a major motivation for participants to seek euthanasia, it was when the pain was coupled with psychosocial and existential suffering that the patient’s suffering became unbearable.

2.4 The Problem of Intolerable or Unbearable Suffering Intolerable or unbearable suffering is commonly identified as a criterion for end of life practices, such as euthanasia and palliative sedation. In Canada, MAID may only be provided to individuals who meet certain eligibility criteria (Criminal Code, 1985/2016). Eligible individuals must have a grievous and irremediable medical condition, which is defined according to four necessary elements including that the “illness, disease or disability or that state of decline causes them [the individual] enduring physical or psychological suffering that is intolerable to them” (Box 1). Similarly, the statutory due care criteria for euthanasia in the Netherlands (Box 2) stipulates

156

Jennifer L. Gibson

BOX 1 Eligibility for Medical Assistance in Dying in Canada (Criminal Code, 1985/2016) In 2016, the criminal prohibition against aiding and abetting suicide was amended in the Criminal Code of Canada to permit medical assistance in dying under certain conditions laid out in Section 241, including eligibility criteria for medical assistance in dying:

Eligibility for medical assistance in dying 241.2 (1)

A person may receive medical assistance in dying only if they meet all of the following criteria: (a) they are eligible d or, but for any applicable minimum period of residence or waiting period, would be eligible d for health services funded by a government in Canada; (b) they are at least 18 years of age and capable of making decisions with respect to their health; (c) they have a grievous and irremediable medical condition; (d) they have made a voluntary request for medical assistance in dying that, in particular, was not made as a result of external pressure; and (e) they give informed consent to receive medical assistance in dying after having been informed of the means that are available to relieve their suffering, including palliative care.

Grievous and irremediable medical condition (2)

A person has a grievous and irremediable medical condition only if they meet all of the following criteria: (a) they have a serious and incurable illness, disease or disability; (b) they are in an advanced state of irreversible decline in capability; (c) that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable; and (d) their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.

“that the patient’s suffering is unbearable, with no prospect of improvement” (Regional Ethics Review Committees, 2015); and in Belgium, the legislated requirement is that the “patient is in a medically futile condition of constant and unbearable physical or mental suffering that cannot

Pain, Intolerable Suffering, and End-of-Life Care

157

BOX 2 Statutory Due Care Criteria for Euthanasia in The Netherlands Under section 2 (1) of the Termination of Life on Request and Assisted Suicide (Review Procedures) Act, 2001 (cited in Regional Euthanasia Review Committees, 2015), “the physician must: (a) be satisfied that the patient’s request is voluntary and well-considered; (b) be satisfied that the patient’s suffering is unbearable, with no prospect of improvement; (c) have informed the patient about his situation and prognosis; (d) have come to the conclusion, together with the patient, that there is no reasonable alternative in the patient’s situation; (e) have consulted at least one other, independent physician, who must see the patient and give a written opinion on whether the due care criteria set out in (a) to (d) have been fulfilled; (f) have exercised due medical care and attention in terminating the patient’s life or assisting in his suicide.”

be alleviated, resulting from a serious and incurable disorder cause by illness or injury” (Kidd, 2002). It is notable that these countries do not tie intolerable suffering to any particular medical condition, point in time, or treatment plan. By contrast, in the United States, states in which physician-assisted suicide is legal are silent on patient suffering and require only that the individual have a terminal illness with a prognosis of less than 6 months. Clinical practice guidelines in Canada, Europe and the United States regarding the use of palliative sedation also recommend its use for refractory and intolerable suffering in the last weeks of an individual’s life (Cherny, 2014; Dean, Cellarius, Henry, Oneschuk, & Librach, 2014; Kirk & McMahon, 2010). Clinical experience shows, however, that addressing intolerable suffering in practice is not straightforward and raises a number of uncertainties, particularly for physicians and other health professionals caring for patients with life-limiting or life-threatening illness. These uncertainties are both conceptual and practical in nature and have significant ethical implications for clinical practice. 2.4.1 Definition of Intolerable Suffering There is uncertainty about the concept of intolerable suffering itself. Dees, Vernooij-Dassen, Dekkers, and van Weel (2010) conducted an integrative

158

Jennifer L. Gibson

literature review of publications that define unbearable suffering in general, end-of-life, and in requests for euthanasia contexts, and found there is no consensus in literature on a definition. Strang and colleagues (2004) explored how another common but ill-defined termdexistential paind is often used synonymously with suffering, and that existential pain may be a clinically important factor that may reinforce or be the primary cause of pain. Downie and Chandler (2018) point out that intolerable may mean “literally impossible to bear” (p. 21) or it may mean excessive or “toward the extreme end on a spectrum” (p. 21). The former would imply that euthanasia could not be provided until and unless the individual were in a state of extreme suffering that could not be tolerated. To the extent that provision of euthanasia or continuous palliative sedation is contingent on the individual achieving this state of intolerable suffering, it would have the effect of prolonging the suffering of the individual. Prolonging suffering of a dying patient to a point where it can no longer be borne in this sense would violate ethical obligations to prevent harm and to alleviate suffering. Indeed, the International Association for the Study of Pain (IASP) Declaration of Montreal highlights the rights of people with pain and pain-related suffering (IASP, 2010; see also Sullivan & Ballantyne, this volume). These prima facie rights include the right to pain-relief and freedom from pain. These rights place two corresponding obligations on health care providers. First, it suggests that health care providers ought to provide patients suffering with pain the tools they have within their armamentarium to relieve their pain and suffering. Second, and consistent with ethical obligations in medicine more generally, health care providers ought not to inflict pain (and suffering) on patients than what might be required for diagnosis and treatment and consistent with the patient’s values and preferences, such as the pain that might accompany a vaccination injection (Dugan, 1996). Alternatively, a second interpretation of intolerable implies that it may be possible for the individual to bear the suffering, at least for a time, but that it is sufficiently excessive that the individual cannot reasonably be expected to bear it indefinitely. In other words, the burden of suffering experienced by the individual is very great and invokes a moral obligation in the form of a therapeutic response to alleviate it. I assume for the purpose of this chapter that this second interpretation of intolerable is intended by the criterion of intolerable suffering in the context of end of life care.

Pain, Intolerable Suffering, and End-of-Life Care

159

2.4.2 Recognizing Intolerable Suffering There is uncertainty about how to recognize intolerable suffering (Cartagena, et al., 2016; Rietjens, van der Maas, Onwuteaka-Philipsen, van Delden, & van der Heide, 2009). As discussed previously, the subjective nature of suffering means that suffering is unique to the individual and is to this extent outside the reach of objective assessment by others. Physiological manifestations of a disease, including their symptoms, or certain behaviours such as crying and wincing, may provide insight into factors contributing to, or causing an individual’s pain or suffering. However, given two patients in similar clinical circumstances, what may be intolerable to one patient may be tolerable to the other. Moreover, there may be differences between patients and physicians about which factors matter most in determining the presence of intolerable suffering. Pasman, Rurup, Willems, and OnwuteakaPhilipsen (2009) found that whereas physicians emphasized physical suffering and observable symptoms of suffering, patients emphasized psychosocial suffering related to a fear of dependence, a loss of social role or value, or the experience of being alive but not living. Assessment of unbearable suffering may become especially problematic in cases involving patients with early dementia or where existential suffering is the sole reason for seeking euthanasia (Rietjens, et al., 2009). Contemporary healthcare practice emphasizes standardization of clinical practices based on best available evidence to ensure safe, effective, and equitable care. The latter consideration of equity is a stringent requirement, which may be difficult to apply in the face of patient suffering. For if two patients are similar from a clinical perspective in terms of their disease diagnosis, symptoms, and prognosis, there must be good reason for treating them differently. The nature of each individual’s suffering may provide such a reason. In the Dutch context, the Code of Practice of Regional Euthanasia Committees states, “it must be palpable to the physician that this particular patient’s suffering is unbearable” and hence, unbearable suffering must in this sense be “subject to objectification” (Rietjens, et al., 2009). However, the apparent incompatibility of objective measurement of a fundamentally subjective phenomenon makes clinical assessment of intolerable suffering especially difficult. 2.4.3 Responding to Intolerable Suffering There is uncertainty about how to respond to an individual’s suffering and the moral burden that accompanies this uncertainty. Cassels commented that “it is difficult for non-physicians to know how indelibly stamped

160

Jennifer L. Gibson

into the doctor’s whole being is the injunction not to harm a patient” (2004, p. 177). My clinical colleagues describe how they have grappled with difficult clinical situations where determining the right thing to do for and with a patient was unclear. In some cases, this may reflect a lack of training in how to recognize suffering, lack of adequate resources and time to respond appropriately to patient suffering, and patient-specific factors limiting effective communication in this context (Cartagena, et al., 2016). More generally, however, it speaks to the nature of the patient-provider relationship in the unique circumstances of an individual’s journey toward death. Although suffering is often framed in terms of a patient’s suffering, health care providers may also experience suffering within their role (Cartagena, et al., 2016). In their qualitative study of health care providers’ views of suffering and end of life care, Cartagena, et al. (2016) quoted one palliative care physician’s experience of their own suffering in the care of a dying patient as follows: “In fact, it’s very hard for the clinicians, whether it’s a nurse, a pharmacist, a physio, doctor, it’s to care for those types of patients when you’re, when they’re uncomfortable. You go ‘Oh what can I do here?’ And you yourself, I think, have anxiety generated based on, you know, being in a room with somebody who’s clearly suffering, that you need to do something, and you want to do something about it, and feel the need to do something about it. So that will impact you as well” (p. 40).

Responding to intolerable suffering in a clinical context is not an easy task. Doing so in the highly regulated context of MAID, in which failure to comply with legal requirements brings the threat of criminal sanction, confers an additional burden on physicians and other health professionals to do the right thing according to the law and professional practice standards. The rule outlined in the law or a professional practice guideline must be put into practice in the unique case of the person needing care. The gap between the rule and the case may be hard to bridge with confidence given the uncertainties outlined thus far. Yet, as Quill & Cassell, 2004 note, “standardized approaches cannot possibly attend adequately to the distinct and profound specificity of the patient and physicians as person or the shared experiences and meanings that develop between them over time” (p. 29). In the following sections, I explore how these uncertainties may offer productive opportunities for enriching the patient-provider relationship in addressing pain and suffering and in particular, intolerable suffering in the

Pain, Intolerable Suffering, and End-of-Life Care

161

context of end-of-life care. I draw from Hans-Georg Gadamer’s work in philosophical hermeneutics to reframe the problem of suffering and its attendant uncertainties as a quest for mutual understandingda fusion of horizonsdof patient and health care provider within the therapeutic relationship. My starting point will be his analysis of illness and the enigma of health and its implications for the health care provider’s role.

3. ILLNESS AND THE ENIGMA OF HEALTH In his collection of essays, The Enigma of Health, Gadamer (1996) explores the nature of illness, the role of the physician, and the goals of medicine. Gadamer is concerned with “the question of finding the right balance between our technical capacities and the need for responsible actions and choices” in the sphere of health (1996a, p. viii-ix). At the heart of his inquiry is what he refers to as practical wisdom (phronesis in Greek), which is realized through action that is right or fitting in a particular situation and which demands a form of attentiveness to the concrete case beyond the simple application of expertise or scientific knowledge (1996a, p. 138; 1996b, p. 92). Rather, practical wisdom engages questions of the good, which is always open to interpretation given the circumstances, and must be worked out through deliberation and decision. Gadamer, thus, distinguishes between phronesis and scientific knowledge or technical expertise in medicine, where the former speaks to the art of healing as distinct from the technical application of scientific knowledge in diagnosis or treatment (1996a). The significance of this distinction will become clear in how Gadamer defines illness and the physician’s role in caring for the ill.

3.1 Gadamer’s Definition of Illness Illness, writes Gadamer, “is, in the last analysis, not the established result which scientific medicine declares as illness but, rather, the experience of the person suffering it” (1996a, p. 54e55). It is experienced as a “disturbance which can no longer be ignored” (p. 55) and specifically “a disturbance of the harmonious interplay between the feeling of well-being and our capacity to be actively engaged in the world” (p. 99) and a “fall from selfsustaining equilibrium into a state of imbalance” (p. 55). Pain may “register through subjective sensation a disturbance in that harmonious balance of bodily processes which constitute health” (p. 108); however, the experience of illness is not reducible to pain or bodily sensations. Nor is it defined by a

162

Jennifer L. Gibson

particular diagnosis, set of symptoms, or encounter with a health professional. Rather illness is “that ‘revolt’ or rebellion which takes places when something starts to dysfunction”; it “appears as something set over against us, as an object (Gegenstand), as that which offers resistance (Widerstand) and must be broken” (p. 96). Illness “imposes itself on us as something threatening and disruptive which we seek to be rid of” (p. 105) and as the sociologist Frank (2010) writes, “illness fractures the patterns that hold lives together” (p.52). It is in the experience of illness, Gadamer argues, that the enigma of health is revealed. Persons become aware of health by its absence, by becoming aware that there was something there, which is now lost (p. 74)d a sense of well-being (p. 74), a “harmony in which everything is in accord” (p. 75), an equilibrium (p. 36)dand it is its loss that people experience as illness and that compels people to seek out medical assistance to restore it. What is lost, however, is not reducible to function or to a set of symptoms. Rather, what is lost is “a condition of being involved, of being in the world, of being together with one’s fellow human being, of active and rewarding engagement in one’s everyday tasks” (p. 113). When human beings experience illness, we experience this loss in a profound way that dislocates us from the “cycle of human, social, professional and family life” (p.78), “the sustaining rhythm of life” (p. 79), our self-identity, and our “feeling of being at home in the world” (p. 81).

3.2 The Role of the Physician What then is the role of the physician in caring for a person who is ill? It should be clear by now that an appeal to scientific knowledge or technical expertise alone will not be sufficient to respond to illness in all cases. The tendency within modern medicine, particularly as it is defined by the biomedical model of disease and the normative thrust of evidence-based medicine, is to treat “illness as if it possesses an independent existence which we must seek to destroy” (Gadamer, 1996, p. 111), to control it by subjecting it to measurement according to standard values and to objectify it as a case of something, such as a disease condition. Sometimes such efforts are successful in eradicating the disease and its symptoms, which for some patients may also eradicate their illness in the Gadamerian sense. For these individuals, however, the residue of illness may persist in their daily lives through the reaction of others or the routine clinical monitoring of their clinical or remission status. However, if illness is understood as the “experience of the one suffering it” (p. 55), then the physician must “[learn] to look for it in the eyes of the patient or to listen for it in the patient’s voice”

Pain, Intolerable Suffering, and End-of-Life Care

163

rather than to “try to read it in the data provided by technologically sophisticated measuring devices” (p. 98). Gadamer explores the role of the physician in relation to the treatment of illness noting that the expression, therapy, derives from the Greek word therapeuin meaning service (Gadamer, 1996, p. 110). Treatment “stands in service to nature” (p. 110) in so far as it is “an attempt to restore an equilibrium that has been disturbed” (p. 36) and an intervention to “[assist] the fluctuating equilibrium of health” and to “[support] those factors that help to sustain equilibrium” (p. 37). The physician’s role is, thus, one of “providing help, of enabling patients to recover their health and to return to their everyday lives”, which means that physicians “must be able to look beyond the ‘case’ they are treating and have regard for the human being as a whole in that person’s particular life” (p. 43). It would be reasonable to ask what bearing the preceding discussion may have for individuals with life-limiting or life-threatening conditions, particularly for those whose deaths may be proximal in time. If the physician’s role is to assist patients in recovering their health, then is this opportunity denied to the patient whose future is no longer wide open and for whom a return to daily life is no longer an option? Is it possible for an individual at the end of life to be both restored to health and dying? Treating the dying presents a unique difficulty for the physician for, as Gadamer observes, “[t]o what extent may the doctor seek to ease the patient’s suffering when what is thereby taken away is not only the patient’s pain but also their ‘person’, their freedom and responsibility for their own life, and ultimately even awareness of their own death?” (p. 172). This seeming paradox holds only if health is defined narrowly in biomedical terms as absence of disease or its symptoms. In the Gadamerian sense of health, which is experienced by the patient as a “life-historical and social process” not a “medical-biological state of affairs” (p. 42), what matters is the recovery of the patient’s sense of self-identity and of “being involved, of being in the world, of being together with one’s fellow human beings” (p. 113), which bears much in common with the sense of integrity and intactness which re-emerges when suffering is addressed (Cassell, 2004b). Indeed, recent studies lend support to this conception of health. For example, Goel, Rosella, Fu, and Alberga (2018), found that increasing life dissatisfaction is associated with higher healthcare utilization in the future and that this association holds even when controlling for factors, such as comorbidity and socioeconomic status. In addition, self-rated health status among older adults with chronic diseases appears to be

164

Jennifer L. Gibson

influenced to greater extent by social factors compared to younger adults with chronic diseases for whom physical factors and functioning are more influential (Idler & Benyamini, 1997). Hence, the proximity of death may indeed be a source of suffering for patients with life-limiting or lifethreatening disease facing the loss of future possibilities. It is the role of the physician to address this suffering thereby helping the patient to recoverd if not all that which has been or will be lostdhealth as a sense of well-being, of intactness, of being-in-the-world, even until death.

3.3 Therapeutic Dialogue and the Problem of Intolerable Suffering Given the physician’s role, how ought it to be put into practice? And, how might this help to address the problem of intolerable suffering? Gadamer reminds us that the physician’s role is always in relation to the patient. It is within the patient-physician relationship that the art of healing is realized. Recalling that the experience of pain and suffering involves a “profound inwardization” (p. 75), which draws the patient in and away from the external world of goals, projects and other people engaged in a communal life. The patient has “fallen out” of their normal life (p. 42) and is not “at home in the world” or “at home with oneself” (p. 59). In addressing the patient’s pain and suffering, the physician enables to patient to return to a sense of being at home, which signals the patient’s recovery. Gadamer proposes that the way in which this is achieved is through therapeutic dialogue. Therapeutic dialogue is “an attempt to set in motion once again the communicative flow of the patient’s life experience and to re-establish that contact with others from which the person is so tragically excluded” (p. 138). Cassell (2004a) makes a similar set of observations: Because of the privacy of suffering, the suffering person is always, to some degree, isolated from the rest of us. Suffering is a profoundly lonely state. The first step in restoring intactness is, therefore, to reach out to the suffering person to bring him or her back with the rest of us. You must communicate to the person that no matter what happens or how difficult it is, you are going to be there and help (p. 287).

Hence, while the treatment may involve the practical application of scientific knowledge in diagnosing a disease, curing it, or addressing its symptoms, the treatment implicates the patient-physician relationship. Therapeutic dialogue is not reducible to the information-eliciting question-and answer of taking a case history. Rather, Gadamer envisions genuine dialogue as a “form of attentiveness, namely the ability to sense the demands

Pain, Intolerable Suffering, and End-of-Life Care

165

of an individual person at a particular moment and to respond to those demands in an appropriate manner” (Gadamer, 1996, p.138). For this reason, “dialogue between doctor and patient also belongs to the process of treatment. It is this dialogue which constitutes the area of common ground between doctor and patient from beginning to end and which is able to break down the distance that lies between them” (1996, p. 126). To what extent can therapeutic dialogue address the problem of intolerable suffering? On the one hand, the subjectivity of suffering seems a barrier to the therapeutic promise of dialogue. If the patient’s suffering is to this extent out of the physician’s reach, it is difficult to see how common ground can be achieved between physician and patient. On the other hand, it might be argued that the physician need only ask the patient whether their suffering is intolerable to them. However, if the answer to this question is to have any therapeutic significance in responding to the suffering of the patient and restoring what they have lost through illness, then something more is needed to bridge the gap in understanding between patient and physician. For this, I turn to Gadamer’s investigation into the nature and possibility of human understanding in his Truth and Method (1990). Although it is not possible to provide a thoroughgoing treatment of his philosophical hermeneutics here, I seek to describe those features which I believe will illuminate the therapeutic potential of dialogue in responding to the suffering of patients with life-limiting or life-threatening illness. When a patient and a physician meet in the clinical context, they enter the situation as historical beings shaped by their experiences and the tradition within which each is embedded. Gadamer refers to this as historically-effected consciousness, which “determines in advance both what seems to [each] worth inquiring about and what will appear as an object of investigation” (Gadamer, 1990, p. 300). It establishes the horizon from which standpoint each person approaches the situation and sets the present limits of each person’s understanding. The question then becomes whether it is possible to achieve a common understanding through a “fusion of horizons” (Gadamer, 1990, p. 388). Gadamer (1990) argues that “conversation is the process of coming to an understanding” (p. 385), which comes about when “each person opens himself up to the other, truly accepts his point of view as valid and transposes himself into the other to such an extent that he understands not the particular individual but what he says” (p. 385). In conversation, one becomes aware of the limitations of one’s own horizon and the possibility that it could be otherwise,

166

Jennifer L. Gibson

from which is created a common language that makes the situation intelligible to each person and a fusion of horizons possible. Gadamer emphasizes that “[to] reach an understanding in a dialogue is not merely a matter of putting oneself forward and successfully asserting one’s own point of view, but being transformed into a communion in which we do not remain what we were” (p. 379). This explains why Gadamer underlines the nature of treatment as “[recognizing] the other in their otherness, as opposed, for example, to the tendency towards standardization promoted by modern technology,” (1996a, p. 109). If the patient and the physician are to reach mutual understanding through dialogue, they must be open to hearing what the other is saying and to being changed as a result. The implications for the patient-physician relationship are expressed clearly by Cassell (2004a) as follows: The doctor-patient relationship is the vehicle through which the relief of suffering is achieved. One cannot avoid “becoming involved with the patient and at the same time effectively deal with the suffering. In fact, with patients who are suffering it is virtually impossible to be in their presence and remain indifferent. . It is through the connection with the patient that information flows telling us what the patient is feeling and even what body sensations they are experiencing. Through the same bond we can provide the bridge over which the suffering person can return from the isolation of suffering. This endangered fragile sick person knows that we can be trusted. He or she starts to become whole again and reconnect with the world through the relationship. It is also because of the relationship that the patient can accept a new reality that includes the illness and the physician who has objectified it” (p. 290e291).

4. CONCLUSION With an understanding of the patient-physician relationship as a fusion of horizons around the suffering of the patient, intolerable suffering at the end of life is no longer a problem to be surmounted or standardized but rather an opening for mutual understanding about the patient’s experience of suffering and the illness, which is its source. It is through a therapeutic dialogue that the patient’s suffering can be revealed and begin to be addressed. It is also through a therapeutic dialogue that the uncertainties of the physician faced with the problem of intolerable suffering can be reinterpreted as opportunities for practical wisdom, which is central to the art of healing and the moral core of medicine. While therapeutic dialogue cannot supplant the physician’s legal and professional obligations, particularly in the

Pain, Intolerable Suffering, and End-of-Life Care

167

case of MAID, it may create conditions for such obligations to be achieved more fully. For example, therapeutic dialogue may enable a physician to confirm with greater confidence that a patient does or does not meet the eligibility criteria for MAID. This approach calls for a different type of therapeutic relationship between the physician and the patient than what often occurs, one which recognizes the subjectivity of both individuals as persons and makes possible the creation of new meaningsdand hence, new experiencesdin the care of patients who have life-limiting or life-threatening illness. For the physician, this means a better understanding of a patient’s pain and suffering, including when suffering has become intolerable to the patient. This understanding may open up new or unexplored avenues for responding to the suffering through palliative or other types of healing interventions, on the one hand, and offer insight into a patient’s choice of the most acceptable remedy for intolerable suffering, including MAID, in the total circumstances of their life, on the other. For the patient, this means being drawn back from the loneliness of illness into communal life knowing that together with the physician they “face the unknown together” (Quill & Cassell, 2004, p. 32). Hence, the mutual understanding of suffering that is achieved through therapeutic dialogue creates the possibility of alleviating a patient’s suffering and restoring a patient’s sense of intactness and integrity even in the face of death.

ACKNOWLEDGEMENTS Jennifer Gibson would like to thank Daniel Buchman for his insightful comments and substantive feedback on the manuscript and Karen Davis for her careful reading of earlier drafts. Gibson has no conflicts of interest to declare.

REFERENCES An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying), S.C. 2016, c.3. Retrieved from http://laws-lois.justice.gc.ca/eng/ AnnualStatutes/2016_3/FullText.html. Bakitas, M. A., Lyons, K. D., Hegel, M. T., Balan, S., Brokaw, F. C., Seville, J., & Ahles, T. E. (2009). Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The project ENABLE II randomized controlled trial. Journal of the American Medical Association, 302, 741e749. Barbera, L., Sussman, J., Viola, R., Husain, A., Howell, D., Librach, S. L., & Paszat, L. (2010). Factors associated with end-of-life health service use in patients dying of cancer. Healthcare Policy, 5(3), e125ee143. Boston, P., Bruch, A., & Schreiber, R. (2011). Existential suffering in the palliative care setting: An integrated literature review. Journal of Pain and Symptom Management, 41, 604e618. Branigan, M. (2015). Desire for hastened death: Exploring the emotions and the ethics. Current Opinion in Supportive and Palliative Care, 9(1), 64e71.

168

Jennifer L. Gibson

Carnevale, F. A. (2009). A conceptual and moral analysis of suffering,. Nursing Ethics, 16(2), 173e183. Cartagena, R. G., Thompson, A. K., Katebian, K., Lemmens, T., Geist, R., Schipper, H., … Handelman, M. (December 2016). Understanding the relationship between suffering and capacity at the end-of-life: A pilot study. Toronto: Law Commission of Ontario. Retrieved at https://www.lco-cdo.org/en/our-current-projects/improving-the-laststages-of-life/commissioned-research-papers/understanding-the-relationship-betweensuffering-and-capacity-at-the-end-of-life-a-pilot-study/. Cassell, E. J. (1999). Diagnosing suffering: A perspective. Annals of Internal Medicine, 131, 531e534. Cassell, E. J. (2004a). The nature of suffering and the goals of medicine. Oxford: Oxford University Press. Cassell, E. J. (2004b). When suffering patients seek death. In T. E. Quill, & M. P. Battin (Eds.), Physician-assisted dying: The case for palliative care and patient choice (pp. 75e88). Baltimore: Johns Hopkins University Press. Cherny, N. I., & on behalf of the ESMO Guidelines Working Group. (2014). ESMO Clinical Practice Guidelines for the management of refractory symptoms at the end of life and the use of palliative sedation. Annals of Oncology, 25(S3), 143e152. Chochinov, H. M., Hack, T., Hassard, T., Kristianson, L. J., McClement, S., & Harlos, M. (2005). Understanding will to live in patients nearing death. Psychosomatics, 46, 7e10. Clark, D. (1999). ‘Total pain’, disciplinary power and the body in the work of Cicely Saunders, 1958-1967. Social Science and Medicine, 49(6), 727e736. Coulehan, J. (2009). Compassionate solidarity: Suffering, poetry, and medicine. Perspectives in Biology and Medicine, 52, 585e603. Criminal Code, R.S.C. 1985 (Amended 2016), c.46, s.241.2. Retrieved from http://lawslois.justice.gc.ca/eng/acts/C-46/page-54.html#h-79. Dean, M. M., Cellarius, V., Henry, B., Oneschuk, D., & Librach, S. L. (2014). Framework for continuous palliative sedation therapy (CPST) in Canada. Journal of Palliative Medicine, 15(8), 1e10. Dees, M., Vernooij-Dassen, M., Dekkers, W., & van Weel, C. (2010). Unbearable suffering of patients with a request for euthanasia or physician-assisted suicide: An integrative review. Psycho-Oncology, 19(4), 339e352. Dees, M. K., Vernooij-Dassen, M. J., Dekkers, W. J., Vissers, K. C., & van Weel, C. (2011). ‘Unbearable suffering’: A qualitative study on the perspectives of patients who request assistance in dying. Journal of Medical Ethics, 37(12), 727e734. Downie, J., & Chandler, J. (2018). IRPP Report: Interpreting Canada’s medical assistance in dying legislation. Retrieved at http://irpp.org/research-studies/interpreting-canadas-medicalassistance-in-dying-maid-legislation/. Dugan, D. C. (1996). Pain and the ethics of pain management. HEC Forum, 8(6), 330e339. El-Jawahri, A., Greer, J. A., & Temel, J. S. (2011). Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. Journal of Supportive Oncology, 9, 87e94. Frank, A. W. (2010). Why doctors’ stories matter. Canadian Family Physician, 56(1), 51e54. Gadamer, H.-G. (1990). Truth and method (J. Weinsheimer & D. G. Marshall, Trans.) (2nd rev.). New York: Crossroads (Original work published 1960). Gadamer, H.-G. (1996). The enigma of health (J. Gaiger & N. Walker, Trans.). Stanford: Stanford University Press (Original work published 1993). Ganzini, L., Goy, E. R., & Dobscha, S. K. (2008). Why Oregon patients requested assisted death: Family members’ views. Journal of Internal Medicine, 23(2), 154e157. Goel, V., Rosella, L. C., Fu, L., & Alberga, A. (2018). The relationship between life satisfaction and healthcare utilization: A longitudinal study. American Journal of Preventive Medicine. https://doi.org/10.1016/j.amepre.2018.04.004. in press.

Pain, Intolerable Suffering, and End-of-Life Care

169

Idler, E. L., & Benyamini, Y. (1997). Self-rated health and mortality: A review of twentyseven community studies. Journal of Health and Social Behaviour, 38, 21e37. International Association for the Study of Pain. (2010). Declaration of Montreal: Declaration that access to pain management is a fundamental human right. http://www.iasp-pain.org/Content/ NavigationMenu/Advocacy/DeclarationofMontr233al/default.htm. Kidd, D., & (Trans). (2002). The Belgian Act on euthanasia of May 28, 2002. Ethical Perspectives, 9, 182e188. Retrieved at http://www.ethical-perspectives.be/page.php? FILE¼ep_detail&ID¼33&TID¼59. Kirk, T. W., Mahon, M. M., & on behalf of the Palliative Sedation Task Force of the National Hospice and Palliative Care Organization Ethics Committee. (2010). National Hospice and Palliative Care Organization (NHPCO) position statement and commentary on the use of palliative sedation in imminently dying terminally ill patients. Journal of Pain and Symptom Management, 39(5), 914e923. Kleinman, A. (1992). Pain and resistance: The delegitimation and relegitimation of local worlds. In M.-J. D. Good, P. E. Brodwin, B. J. Good, & A. Kleinman (Eds.), Pain as human experience: An anthropological perspective (pp. 169e197). Berkeley: University of California Press. Knaul, F. M., Farmer, P. E., Krakauer, E. L., De Lima, L., Bhadelia, A., Jiang, X., ArreolaOrnelas, H., , … Rajagopal, M. R., & on behalf of the Lancet Commission on Palliative Care and Pain Relief Study Group. (2018). Alleviating the access abyss in palliative care and pain reliefdan imperative of universal health coverage: The Lancet Commission report. The Lancet, 391(10128), 1391e1454. Kolva, E., Rosenfeld, B., Pessin, H., Breitbart, W., & Brescia, R. (2011). Anxiety in terminally ill cancer patients. Journal of Pain and Symptom Management, 42(5), 691e701. Kuhl, D. (2005). Facing death: Embracing life. Canadian Family Physician, 51, 1606e1608. Pasman, H. R. W., Rurup, M. L., Willems, D. L., & Onwuteaka-Philipsen, B. D. (2009). Concept of unbearable suffering in contex of ungranted requests for euthanasia: Qualitative interviews with patients and physicians. Bmj: British Medical Journal, 339, b4362. Pastrana, T., Junger, S., Ostgathe, C., Elsner, F., & Radbruch, L. (2008). A matter of definition: Key elements identified in a discourse analysis of definitions of palliative care. Palliative Medicine, 22, 222e232. Pearlman, R. A., Hsu, C., Starks, H., Back, A. L., Gordon, J. R., Bharucha, A. J., … Battin, M. P. (2005). Motivations for physician-assisted suicide: Patient and family voices. Journal of General Internal Medicine, 20(3), 234e239. Quill, T. E., & Cassell, C. K. (2004). Non-abandonment: A central obligation of physicians. In T. E. Quill, & M. P. Battin (Eds.), Physician-assisted dying: The case for palliative care and patient choice (pp. 24e38). Baltimore: Johns Hopkins University Press. Regional Euthanasia Review Committees. (2015). Code of practice. The Netherlands: The Hague. Retrieved at https://www.euthanasiecommissie.nl/de-toetsingscommissies/ uitspraken/brochures/brochures/code-of-practice/1/code-of-practice. Rietjens, J. A. C., van der Maas, P. J., Onwuteaka-Philipsen, B. D., van Delden, J. J. M., & van der Heide, A. (2009). Two decades of research on euthanasia from The Netherlands. What have we learnt and what questions remain? Journal of bioethical inquiry, 6(3), 271e283. Seow, H., Brazil, K., Sussman, J., Pereira, J., Marshall, D., Austin, P. C., & Barbera, L. (2014). Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: A pooled analysis. Bmj: British Medical Journal, 348, 3496. Sumner, L. W. (1999). Welfare, happiness, and ethics. Oxford: Oxford University Press.

170

Jennifer L. Gibson

Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., & Lynch, T. J. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine, 363, 733e742. Turk, D. C., & Wilson, H. D. (2009). Pain, suffering, pain-related suffering e are these constructs inextricably linked? The Clinical Journal of Pain, 25(5), 353e355. World Health Organization. (2018). Palliative care: Key facts. Geneva: World Health Organization. Retrieved at http://www.who.int/en/news-room/fact-sheets/detail/palliative-care. World Health Organization & World Palliative Care Alliance. (2014). Global atlas on palliative care. Geneva: World Health Organization. Retrieved at http://www.who.int/ncds/ management/palliative-care/palliative-care-atlas/en/. Zimmerman, C., Swami, N., Krzyzanowska, M., Leighl, N., Rydall, A., & Rodin, G. (2014). Early palliative care for patients with advanced cancer: A cluster-randomised controlled trial. The Lancet, 383, 1721e1730. Zimmerman, C., Swami, N., Krzyzanowska, M., Leighl, N., Rydall, A., Rodin, G., … Hannon, B. (2016). Perceptions of palliative care among patients with advanced cancer and their caregivers. Canadian Medical Association Journal, 88, E217eE227.

FURTHER READING Bueno-G omez, N. (2017). Conceptualizing suffering. Philosophy, Ethics, and Humanities in Medicine, 12, 7. Cassell, E. J. (1991). The nature of suffering and the goals of medicine,. New York: Oxford University Press. Chida, Y., & Steptoe, A. (2008). Positive psychological well-being and mortality: A quantitative review of prospective observational studies. Psychosomatic Medicine, 70(7), 741e756. Downie, J. (2004). Dying justice: A case for decriminalizing euthanasia and assisted suicide in Canada. Toronto: University of Toronto Press. Gadamer, H.-G. (1996b). Reason in the age of science (F. G. Lawrence, Trans.) (9th ed.). Cambridge: The MIT Press (Original work published 1981). Government of Canada. (2016). Legislative background: Medical assistance in dying (Bill C- 14, as Assented to on June 17, 2016). Retrieved from http://www.justice.gc.ca/eng/rp-pr/ other-autre/adra-amsr/index.html. Wilkinson, I., & Kleinman, S. (2016). A passion for society: How we think about human suffering. Oakland: University of California Press.