'Unbearable and hopeless suffering' : euthanasia and physician-assisted suicide in the Netherlands

‘Unbearable and Hopeless Suffering’

Euthanasia and Physician-Assisted Suicide in the Netherlands

Alessandra Giugliano

1096709

MSc Medical Sociology and Anthropology

Supervisor: Dr. Patrick Brown

Second Reader: Dr. Kristine Krause

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TABLE OF CONTENTS ... 1

ACKNOWLEDGMENTS: ... 4

CHAPTER 1: INTRODUCTION ... 5

CHAPTER 2: EPAS IN CONTEXT ... 8

2.1EPAS|CULTURAL CONTEXT ... 8

2.2EPAS|GENERAL CONTEXT ... 8

2.3EPAS’UNBEARABLE SUFFERING RESEARCH |CONTEXT ... 10

2.4DECISIONAL COMPETENCE |CONTEXT ... 11

2.5CONCLUSION |RESEARCH QUESTIONS ... 12

CHAPTER 3: THEORETICAL FRAMEWORK ... 14

3.1SUFFERING (CASSELL 1998;1999) ... 14

3.2SICK ROLE (PARSONS 1951;1978) ... 16

3.3MEDICALIZATION ... 20 3.4CONCLUSION ... 21 CHAPTER 4: METHODOLOGY ... 23 4.1DATA COLLECTION ... 23 4.2DATA DESCRIPTION ... 24 4.3DATA LIMITATIONS ... 25 4.3.1 Dementia Cases ... 26 4.4FRAMEWORK ANALYSIS ... 26

4.5COMPARATIVE NARRATIVE DISCOURSE ANALYSIS ... 27

4.6ETHICAL CONSIDERATIONS ... 28

4.7REFLEXIVITY ... 29

CHAPTER 5: SUFFERING ... 31

5.1WHAT IS ‘SUFFERING?’ ... 31

5.2WHAT MAKES SUFFERING ‘UNBEARABLE’? ... 32

5.2.1 EPAS: A solution to the unbearable ... 36

5.3PHYSICAL VS.PSYCHOLOGICAL SUFFERING ... 38

5.4LEGITIMIZING FORCES ... 43

5.4.1 The Medical Dimension ... 44

5.4.2 Patient Compliance as Legitimation ... 45

5.4.3 The ‘Sick Role’: Problematic in EPAS? ... 47

5.4.4 Interpretations of Visible Expressions ... 49

5.4.5 Decisional Competence ... 52

5.5CONCLUSION ... 52

CHAPTER 6: DECISIONAL COMPETENCE ... 53

6.1TERMINOLOGY &‘DECISIONAL COMPETENCE’ ... 53

6.2‘DECISIONAL COMPETENCE’ AND ‘DECISIONALLY COMPETENT IN REGARDS TO’ ... 55

6.4TRADITIONAL NOTIONS OF DECISIONAL COMPETENCE WITHIN EPAS ... 57

6.5DECISIONAL COMPETENCE-CONTROVERSY &DIFFICULT CASES ... 59

6.5.1 Decisional Competence & Mental Illness ... 59

6.5.2 Decisional Competence & Depression ... 60

6.5.2 Decisional Competence & Minors ... 63

6.5.3 “Learning difficulties” & Decisional Competence ... 64

6.5.4 Dementia & Decisional Competence ... 65

CHAPTER 7: EPAS & SUICIDE ... 69

7.1EUTHANASIA &SUICIDE:DISTINCTIONS IN DEFINITION ... 69

7.2SUICIDE &MEDICINE:INSTITUTIONAL HISTORY ... 72

7.3EUTHANASIA &SUICIDE:ADISTINCTION FOR THE PATIENT ... 75

7.3.1 Suicide: Back-up Plan ... 76

7.3.2 The Humane, Inhumane, and Death with Dignity ... 79

7.3.2 EPAS vs Suicide: Certainty & Uncertainty ... 81

7.4CONCLUSION ... 82

CHAPTER 8: CONCLUSION ... 84

8.1REVIEW OF RESEARCH QUESTIONS IN LIGHT OF ANALYTICAL FINDINGS ... 84

8.1.1 What potential forces which act to legitimize patients’ suffering claims are present in documented cases? ... 85

8.1.2 How do physicians deal with ‘difficult’ cases or ambiguous aspects of EPAS? ... 86

8.1.3 What tensions are caused by the relationship of EPAS to suicide? How does this impact categorized ‘psychological’ and ‘non-psychological’ cases? ... 87

8.2RESEARCH LIMITATIONS ... 89

8.3FUTURE RESEARCH RECOMMENDATIONS ... 89

8.3.1 Research Recommendation #1 ... 90 8.3.2 Research Recommendation #2 ... 91 8.4FINAL REFLECTIONS ... 92 REFERENCES ... 93 LIST OF ABBREVIATIONS ... 98 PATIENT CASES ... 99

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I express my deepest appreciation and gratitude for the immense support I received throughout my research. Firstly, my supervisor Dr. Patrick Brown, who motivated me every step of the way. His input and guidance are the reason I was able to articulate my findings. I have learned so much from his supervision, and he has inspired me to achieve my future ambitions. Second, I wish to thank the Netherlands, the RTE, and everyone involved in the practice of EPAS. Not only have they made my research possible, but they also restored in me a sense of hope. Finally, I wish to thank everyone who has helped me to see there is beauty in darkness. My family and friends, whose unconditional love is the reason I am here today and so passionate about my research. My parents, who made my dreams possible, I love you. Yousif, whose continuous love and care made certain insomnia did not win. Sully, whose friendship keeps me going and laughing (sp) every day. And of course, my greatest love, music.

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I

NTRODUCTION

In April 2002, the “Termination of Life on Request and Assisted Suicide (Review Procedures) Act” came into effect in the Netherlands. EPAS1 _{law regards both euthanasia and}

physician-assisted suicide: “In the Netherlands, euthanasia is defined as deliberately ending a person’s life at the person’s request. In physician-assisted suicide, the person self-administers medication that is prescribed by a physician” (Buiting et. al., 2009: 1). This legislation is an updated version of the earlier law regarding EPAS. While 2002 marks the official legalization, the practice is estimated to have existed in the Netherlands for decades. In the 1970s, EPAS was brought into the legal spotlight and began to be intensely publicly debated. Before legalization, physicians often feared legal repercussions. The practice, therefore, lacked transparency and proper documentation (de Watcher, 1992: 23).

In an effort to improve regulation, EPAS was legalized with a set of six due-care criteria to which physicians must adhere. The “Regionale Toetsingscommissies Euthanasie” (RTE)2 _was

established to review each case. Physicians became legally mandated to report each completed EPAS case to the RTE. Afterward, a legal judgment is made and a statement is written. These judgment statements (JSs)3 _{are then condensed as case summaries}4 _{and most are made public}

on the RTE’s website (RTE 2002).

EPAS in the Netherlands is particularly unique due to its highly debated inclusion of psychiatric patients. The due-care criteria state that physicians must “be satisfied that the patient’s suffering is unbearable, with no prospect of improvement” (RTE, 2017: 23). The nature of the patients’ suffering is purposely not limited to traditional notions of physical suffering.

1 _{I use EPAS throughout this thesis to refer to the practice of euthanasia and physician-assisted suicide in the}

Netherlands. The most recent in English available statistics report 95.8% of these cases are euthanasia, 3.8% assisted suicide, and .4% a combination of both (RTE 2017).

2 _{In English the “Regional Euthanasia Review Committee”}

3 _{I use the abbreviation ‘JS’ throughout my thesis to denote ‘Judgment Statement’} 4 _{I use the abbreviate ‘CS’ throughout my thesis to denote ‘Case Summary’}

Currently, “the open and abstract formulation on the criteria implies that physicians are to apply and interpret the criteria themselves when they receive a concrete request for EAS5_{” (Ten Cate}

et al., 2017: 2). Therefore, I contend that in the official RTE documentation of EPAS cases, it is the descriptions of patients’ sufficient 'unbearable and hopeless suffering' that bears the utmost importance in establishing compliance with this due-care criteria. These physicians’ determinations carry extra weight as they establish precedent, as the RTE relies on previous committee findings in their review process (RTE 2018). This thesis aims to explore the ways in which sufficient unbearable and hopeless suffering is constructed through a sociological analysis of existing EPAS CSs and JSs.

This thesis will analyze this complex topic within EPAS through the following structure. In chapter two, I locate EPAS’ relevant context in history, culture, controversy, and academic research. I outline the pertinent background information necessary to comprehend my analytical findings while offering a synthesized description of EPAS guidelines and procedures.

Chapter three details my theoretical approach within my use of Ritchie & Spencer’s (2004) ‘Framework’ approach. I introduce three theoretical concepts in detail and in relation to EPAS: Cassell’s (1998;1999) concept of ‘suffering’, Parsons’ (1951) ‘sick role’, and ‘medicalization’. I employ these concepts as “sensitizing concepts...whereas definitive concepts provide prescriptions of what to see, sensitizing concepts merely suggest directions along which to look” (Blumer, 1954: 7). I will present how, collectively, these three concepts serve as a guiding framework and direction from which I analyzed my data. Chapter four outlines the methodology used in this research with an emphasis on data description. I address limitations to both my data and research. I also consider ethical implications and my own positionality.

The results of my research are presented in empirical chapters five, six, and seven. Chapter five presents my findings in regards to how suffering is documented and discussed within EPAS. Chapter six explores the concept of and judgments regarding decisional competence, particularly in relation to patients’ suffering. Bridging my findings in chapters five and six, chapter

seven then analyzes EPAS CSs and JSs that include discourse on suicide. I build from my discussion of suffering and decisional competence to explore my findings regarding underlying tensions caused by the relationship of EPAS to suicide. Chapter eight concludes with a final discussion of my findings and analysis, closing reflections, and recommendations for future EPAS research.

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2:

EPAS

IN

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ONTEXT

2.1

EPAS

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ULTURAL

C

ONTEXT

In Dutch society, “there is a general conviction that it is better to guide social developments than to try to stop them,” (Griffiths et al. 1998 cited in Rietjens et al., 2009: 283). This notion is present throughout the practice of EPAS’ commitment to both transparency and continuous improvement. Moreover, the documents the RTE produced—which I use as my data set—are intended to maintain these values.

In the Netherlands, EPAS’ function is to assure that every individual has access to a ‘good death.’ The general concept of a ‘good death’ entails: “A death occurring after a long and successful life, at home, without violence or pain, with the dying person being at peace with his environment and having at least some control over events,” (Seal & Van Der Geest, 2004: 885). Therefore, in considering my research, it is crucial to note that EPAS is meant to maintain the accessibility of a ‘good death’ for Dutch citizens. Culturally, the Netherland’s notion of a good death’s “focus is more on the period before death and on the act of dying. Concerns about end-of-life care are predominantly… pre-mortem” (Van der Geest, 2009: 266). This sheds light on why “euthanasia, which literally means ‘good death’” (Van der Geest, 2009: 266), plays such a critical role in Dutch end-of-life care.

2.2

EPAS

|

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ENERAL

C

ONTEXT

Euthanasia is technically still illegal in the Netherlands. However, under the “Termination of Life on Request and Assisted Suicide (Review Procedures) Act)” it is legal, so long as the physician can demonstrate the following due-care criteria are met:

“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 his 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;6

f. have exercised due medical care and attention in terminating the patient’s life or assisting in his suicide” (RTE, 2018: 8).

EPAS constitute 4.4% of population deaths in the Netherlands (RTE, 2017:9). The practice’s commitment to transparency has allowed for a variety of research to be completed. This is essential, given the controversial nature of the practice and its international spotlight. More importantly, current research reports physicians complying with legislation (Rietjens et al., 2009: 282). Additionally, EPAS “has remained a carefully handled option, depending on negotiations between responsible stakeholders” (van der Geest, 2009: 274).

However, there are still several aspects of EPAS that have been the focus of both concern and further research. In regards to my own research, this pertains to existing literature and research concerning ‘unbearable and hopeless suffering’ and ‘decisional competence’. Both

6 _{Due-care criterion ‘e’ entails the physician consult at least one other ‘independent physician’. These independent}

physicians are sometimes referred to in my data as ‘consulting physicians’. Moreover, in cases that involve a psychological disorder two independent physicians must be consulted. One of the physicians must be a psychiatrist (RTE 2018).

aspects of EPAS are continuously debated and especially contested in relation to patients with mental illness within EPAS (Bolt et al. 2015, Doernberg et al. 2016, Kim et al. 2016, RTE 2018).

2.3

EPAS’

U

NBEARABLE

S

UFFERING

R

ESEARCH

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ONTEXT

After EPAS legalization in 2002, a landmark case reaffirmed that “suffering should originate from a medically classifiable disease, either somatic or psychiatric.” (Rietjens et al., 2009b: 502). Following this ruling, the number of reported psychiatric EPAS has continuously increased (Kim, 2019). The RTE instructs physicians to treat EPAS patients’ suffering as subjective and personal. However, the RTE’s guidelines also state that psychiatric EPAS requests require additional scrutiny (2018: 42).

Notably, research on Dutch general practitioners (van Tol et al., 2010) concluded these physicians are significantly more unwilling to approve EPAS requests from patients whose unbearable suffering is classified as psychological in origin. Additionally, this research “found a high concordance between the classification of a patient’s suffering as ‘unbearable’ and the willingness to grant a euthanasia request. Most doctors are only inclined to classify a patient’s suffering as ‘unbearable’ when suffering is directly related to untreatable and actual pain or physical symptoms” (van Tol et al., 2010: 166). Public opinions in the Netherlands are still highly critical of the inclusion of psychological pain, and approval of this practice is significantly lower than in cases of physical pain (Kouwenhoven et al., 2012: 276). The attitudes towards psychological and physical pain are by no means equal (Haverkate, et al., 2000: 866).

Currently, a physician must be ‘convinced’ their patient is suffering unbearably. Yet, there is no explicit legal definition of ‘unbearable suffering’. Thus, ‘unbearable suffering’ appears to lack a clear or uniform understanding amongst physicians, a notion echoed through multiple academic studies7_{. Moreover, research on ‘unbearable suffering’ suggests the concept is highly}

7 _{See more: Buiting et.al. 2009, Block & Biling 1995, Dees et al., 2010, Kim et al. 2016, Rietjens et al. 2009b, Van Tol}

subjective and personal in nature (Rietjens et al. 2009b, Ten Cate et al. 2017, RTE 2018). These findings highlight both the general uncertainty as well as differing opinions regarding what exactly constitutes ‘unbearable and hopeless suffering’.

2.4

D

ECISIONAL

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OMPETENCE

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ONTEXT

While the objective of my research is to examine EPAS patients’ suffering, I found this unavoidably linked to a discussion of patients’ decisional competence. Mainly due to the fact that a patient’s EPAS request will not be granted—despite unbearable suffering—if they are not found decisionally competent.

The due-care criteria, “the physician must be satisfied that the patient’s request is voluntary and well-considered” (RTE, 2018: 8) requires that patients are not forced into their requests, are able to communicate, and are well-informed. A ‘well-considered’ request is meant to avoid patients making impulsive decisions, and ensure the physician has thoughtfully discussed all options with the patient (RTE, 2018: 18-20). However, a voluntary request is “made without any undue influence from others (external voluntariness)” and entails “the patient must be decisionally competent (internal voluntariness)” (RTE, 2018:19). The complexity of this due-care criteria, I contend, lies in the ‘internal voluntariness’ of the request, the patient’s ‘decisional competence’.

Beyond EPAS in the Netherlands, there is a variety of existing research and academic literature pertaining to decisional competence and end-of-life decisions. Collectively, decisional competence is regarded as a complex concept, both in definition and its assessment (Price 2015, Price et al. 2014, Seyfriend et al. 2013). Furthermore, its relationship to mental illness is a popular topic. Controversy over whether mental illness negates an individual’s decisional competence is especially significant within the context of EPAS (Doernberg et al. 2016, Kim & Lemmens 2016, Price et al. 2014).

Within EPAS in the Netherlands, Doernberg et al.’s 2016 research, “Capacity Evaluations of Psychiatric Patients Requesting Assisted Death in the Netherlands”, serves as critical context to my own research8_{. Through content analysis, Doernberg et al.’s research aimed to examine “a}

frequently raised concern about the practice: how physicians address the issue of decision-making capacity of persons requesting psychiatric EAS” (2016: 556). In sum, Doernberg et al.’s research highlights existing controversy regarding decisional competence and those with mental illness. Moreover, the findings of this research concluded:

“case summaries of psychiatric EAS in the Netherlands do not show that a high threshold of capacity9 _{is required for granting EAS. Although this may reflect limitations in}

documentation, it likely represents a practice that reflects the normative position of the review committees” (2016: 556).

This is supported by findings of a general lack of congruency in how decisional competence is handled within EPAS. Inconsistent explanations surrounding decisional competence assessments, and disagreements amongst physicians, are also highlighted (ibid.).

2.5

C

ONCLUSION

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ESEARCH

Q

UESTIONS

In this chapter, I presented the context of EPAS relevant to my research. I especially highlighted existing controversy regarding judgments of unbearable suffering and decisional competence, particularly in relation to those with mental illness. I established how these judgments involve complex concepts that are surrounded by a heightened level of uncertainty as to how they should be defined and assessed. Therefore, the aim of my research is to provide a clearer picture of otherwise ‘murky’ aspects of EPAS. In particular, I focus on the ambiguity

8 _{The same data set used in Doernberg et al.’s 2016 research, RTE case summaries of EPAS psychiatric patients, also}

make up a portion of my secondary qualitative data set (n=66).

9 _{The capacity mentioned in this finding is in regard to a patient’s “decisional capacity”. For a discussion on ‘decisional}

surrounding ‘unbearable and hopeless suffering’ in order to answer my main research questions: What is being constructed as ‘sufficient unbearable and hopeless suffering' to require euthanasia? How does this construction differ between categorized ‘psychological’ and ‘non-psychological’10 _cases?

By analyzing the RTE’s documentation of CS and JSs, I focus on how ‘unbearable and hopeless suffering’ is being categorized, constructed, and negotiated. Moreover, I concentrate on documented causes attributed to ‘unbearable suffering’ and how these are documented in shaping patients’ EPAS experience. Additionally, my research aims to answer the following questions:

-What potential legitimizing forces of patients’ suffering are present in documented cases? -How do physicians deal with ‘difficult’ cases or ambiguous aspects of EPAS?

-What tensions are caused by EPAS in relation to suicide? How does this impact categorized ‘psychological’ and ‘non-psychological’ cases?

10 _{EPAS cases are categorized on their website into the following categories: Cancer, Cardiovascular disease,}

Combination of disorders, Dementia, Multiple geriatric syndromes, Neurological disorders, Other Conditions, Pulmonary disorders, and Psychiatric Disorders. However, per the RTE Code of Practice, EPAS cases regarded as ‘psychological cases’ entail additional scrutiny. The other categories are often addressed as ‘physical’ cases. Dementia cases also require additional scruitiny, but are not included in ‘psychological cases’. see more:

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HEORETICAL

F

RAMEWORK

In this chapter, I will discuss the theoretical framework employed in the analysis of my data. The methodology of my research follows ‘The Framework Method’ (Ritchie & Spencer 1994), therefore I do not use a singular theoretical approach. Instead, I utilize a combined inductive and deductive approach to several theoretical concepts and themes. Moreover, this method facilitates “ongoing interplay between data collection, analysis, and theory development” (Galte et al., 2013: 4). Therefore, the theoretical developments I outline in this chapter are in part rooted in my data, and serve as a framework for my findings. The majority of theoretical literature written concerning EPAS is rooted in philosophy and ethics. However, my research takes an empirical and sociological approach. Therefore, I have drawn on multiple social scientific theories to construct my own analytical framework. The concepts I use, while popular in medical sociology, have seldom been applied to EPAS research.

As ‘unbearable and hopeless suffering’ is the central topic of my research into EPAS, this chapter begins with Cassell’s (1998;1999) concept of suffering. This discussion, particularly in regards to ‘legitimate’ forms of suffering, connects to, and is further developed by, Parsons’ (1951) concept of the ‘sick role’. From this, I will further address the tensions of ontological and moral legitimacy through consideration of ‘medicalization’. Finally, I conclude this chapter by briefly addressing how the combination of these interworking theoretical concepts framed my analysis.

3.1

S

UFFERING

(C

ASSELL

1998;1999)

Cassell defines suffering as, “an affliction of the person, not the body” (1999: 531-532). He regards suffering as multi-dimensional, not just purely ‘physical’. Moreover, suffering is “not only personal— this is involving the person— it is also individual” (ibid). His understanding supports the notion that suffering is a subjective experience, which aids in accounting for variety

within it. I have chosen Cassell’s holistic definition of suffering because it is relevant in considering the RTE’s sentiment towards suffering’s subjective and personal nature. Cassell and the RTE share an understanding that what is considered ‘suffering’ may vary dependent on the patient (Cassell 1998; RTE, 2018:14).

Core to Cassell’s theory is the difficulty that arises particularly in the processes of conceptualizing and diagnosing suffering in medicine. The subjective and personal nature Cassell attributes to suffering poses a difficult task for physicians. Cassell notes a trend in medicine to assess subjective and objective knowledge differently in terms of legitimacy. “Objective knowledge is considered scientific and valuable, whereas subjective information is thought to be ‘soft’ and second-rate” (Cassell 1999: 53). Cassell attributes this to the influence of mind-body dualism. This schism, usually associated with Descartes’ epistemology, entails the mind and the body as two separate entities. Furthermore, Cassell suggests this dualism contributes to the rejection of understanding ‘suffering’ as holistic. This has led to a widely held belief, “that suffering is either exclusively physical (i.e. bodily pain) or not truly real because it is mental (Cassell 1991)” (in Hewitt 2013: 361).

Descartes’ philosophical argument contends that one is more confident in the existence of their mind, rather than their body. However, in modern medicine, Cassell notes physicians’ confidence lies in the observable and objectifiable body (1999). This distinction between mind-body and related ontologies creates a process in which the relative measurability of medical conditions’ physiological aspects, or relative visibility, then relates to the ontological legitimacy of that condition. In return, this ontological legitimacy therefore becoming a prerequisite to moral legitimacy. From this, Cassell argues when the legitimacy of suffering is questioned it results in additional suffering for the individual. Thus, forces that potentially legitimize patients’ suffering serve as critical points of analysis in fully understanding an individual’s suffering (1998: 134).

The impact of medical ‘legitimacy’ on patients’ illness experience is a topic explored widely in medical sociology11_{. Parsons’ (1951) concept, the ‘sick role’, focuses on the respective}

roles of physicians and patients--- placing physicians as the gatekeeper in determining legitimate sickness (Meyer & Obling, 2012:1). Therefore, I employ Parsons’ theory in my research to explore the physician’s role in legitimizing illness. However, I build off Parsons’ theory to discuss how EPAS patients transition from a sick role to an ‘EPAS death role’. This EPAS death role, I argue, then places physicians as the gatekeepers in determining legitimate suffering to warrant EPAS. Thus, Cassell’s concept of suffering offers a critical theoretical backdrop in framing EPAS physicians’ judgments of their patients’ unbearable suffering.

3.2

S

ICK

R

OLE

(P

ARSONS

1951;

1978)

Parsons’ ‘sick role’ originates from his theoretical work on social systems. The sick role serves as a mechanism meant to maintain ‘health’ in society and individuals. It also entails a set of rights and obligations on behalf of both the patient and the physician. A patient’s access to the sick role is argued to result in several forms of legitimacy. The sick role entails ontological legitimacy-- those accepted into the sick role are considered legitimately ill from a biomedical standpoint. The sick role entails moral legitimacy-- those accepted into the sick role are exonerated from normative role obligations and excused from fulfilling normative social responsibility (Parsons, 1978: 436, Meyer & Obling, 2012: 3). Finally, the sick role entails legitimacy in patients’ illness experience-- those accepted into the sick role receive validation in the form of their illness experience being attributed to legitimate medical origins rather than being understood as deviant behavior (Meyer & Obling, 2012:1).

However, core to Parsons’ theory is the expectation of physicians and patients to work collaboratively to move the patient from the sick role back to a normative health role (Williams 2005). Yet, a common critique of Parsons is the sick role does not coherently apply to medical

encounters involving patients with a chronic illness (Williams 2005: 125). EPAS patients also speak to this critique of Parsons, since their return to Parsons’ notion of ‘health’12 _{(1951) is}

rendered highly unlikely. To keep the patient alive entails keeping the patient in some form of an ‘extended sick role’. However, I do not wish to critique Parsons’ sick role in my research. Rather, I have built from Parsons’ concept to suggest a new role EPAS patients transition into from the sick role13_{. However, the same framework Parsons’ sick role entails to describe role obligations}

and rights for physicians and patients I have applied in suggesting an EPAS death role. I outline my theoretical building in the figure below, as it will serve as part of the theoretical framework from which I analyzed my data.

12 _{Parsons’ notion of ‘health’ (1951) refers to the needs of individuals being met so that society (as a social system)}

operates at a functional level. Too much illness, or too low a level of health for individuals in society, would result in a dysfunctional social system (430).

13 _{The methodology used in my research, ‘Framework Analysis’ (Ritchie & Spencer 1994), allows for an inductive and}

deductive approach to theoretical concepts. Therefore, my adaptive version of Parsons’ sick role to EPAS has led me to build from his theoretical concept. While this theory building is in part based on my data, this is consistent with ‘Framework Analysis’ methodology. Therefore, my expansion of Parsons serves as part of my theoretical framework from which I ultimately analyzed my data and produced findings from. I have included the EPAS death role in my theoretical chapter for this reason. This type of theoretical building and inference is consistent with my research’s methodology (Gale & et al., 2013: 6).

Figure 1: Comparison of Parsons’ (1951) ‘Sick Role’ & EPAS Death Role

Parsons’ Sick Role

(1951;1978)

EPAS Death Role

and possess the relevant medical expertise

-To act neutrally and without bias towards patients

(Parsons 1951: 451)

-To be technically competent especially in regards to a complete understanding of the patient who is seeking EPAS’ personhood and condition -To fulfill the due-care criteria set out by the RTE

-To act neutrally without bias towards patients

Physician’s Rights -“Doctors are treated by society as professional practitioners, with a degree of independence and self-regulation”

(Gabe & et al., 2004: 93)

-Doctors allowed access to taboo areas of the body (Parsons 1951: 451)

-Independence and

self-regulation in the form of being able to accept EPAS requests based on their own judgments of when due-care criteria are met -Access to a taboo area of society: death

Patient’s Obligations -”Must seek competent help”

-“Must want to get well”

(Williams, 2005: 124)

-Patient must have made a competent attempt to fulfill sick role obligations

-Patient must seek competent EPAS help through abiding by EPAS regulations

-Patient must cooperate with physicians to assure due-care criteria are met

-Patient must fulfill unbearable and hopeless suffering due-care criterion

The above figure outlines the respective role obligations and rights entailed for physicians and patients in Parsons’ sick role and my adaptive ‘EPAS death role’. For the sick role, the patient is accepted to a sick role contingent on their physician's judgments (Meyer & Obling, 2012: 1). For an EPAS death role, a patient has been accepted into an EPAS death role upon their physicians’ approval of their EPAS request. Like Parsons (1951), failure to meet obligations on behalf of the patient signifies a loss of rights and potential from the social role.

Significantly, I have outlined the legitimizing impact of Parsons’ sick role. I extend Parsons’ theory to suggest these same legitimizing impacts are found on suffering within an EPAS death role. The sick role, entails physicians to make judgments concerning patients’ illness. In EPAS, the physicians’ main judgment concerns whether patients’ suffering is unbearable and hopeless enough to warrant EPAS. Therefore an EPAS death role arguably brings ontological legitimacy-- implying the patients’ suffering is founded within biomedicine. The EPAS death role signifies moral legitimacy-the patients’ suffering justifiably excuses them permanently from normal role responsibilities.

Parsons’ (1951) ‘sick role’ relates to how physicians take an active role as gatekeepers in legitimizing illness experience in relation to specific categories of bodies and practice. The

-Patient must fulfill decisional competence due-care criterion

Patient’s Rights -”Exempt from normal role

obligations”

-”Not deemed responsible for

falling ill”

(Williams, 2005: 124)

-Total exemption from normal role responsibilities

-Exemption from sick role obligations once EPAS request approved

-Death without stigma/shame

(Patient is not deemed

responsible for their death) -Humane and dignified death -End to unbearable and hopeless suffering

concept ‘medicalization’ offers another angle from which I analyze influencing forces on medical legitimacy (Conrad 1992).

3.3

M

EDICALIZATION

Parsons’ theory establishes how otherwise ‘deviant’ behaviors of society are given medical legitimacy through physicians acting as gatekeepers to the ‘sick role’ (1951). The term ‘medicalization’ refers to a process concerning how these same ‘deviant’ behaviors are given medical meaning. I use Conrad’s definition as, “a process by which non-medical problems become defined and treated as medical problems, usually in terms of illnesses or disorders” (Conrad 1992: 209). Medicalization can occur on three levels (Conrad & Schneider 1980): The conceptual level--which focuses on the use of medical language in defining a problem. The institutional level--which focuses on taking a medical approach and applying a medical framework to the problem. The physician-patient interaction level-- where the problem is approached as a medical problem entailing its own medical treatment (ibid.).

Significantly, Conrad (1992) notes that medicalization should be understood as occurring on a spectrum. Some conditions can be fully medicalized, minimally, or incompletely (ibid). When an object is incompletely medicalized, this may result in competing medical opinions amongst both physicians and patients. Moreover, interactions between patients and physicians regarding incompletely medicalized problems often result in the physicians’ opinion prevailing. This notion that physicians' opinions regularly dictate what transpires is regarded as ‘medical dominance’ (Broom & Woodward, 1996:361). Medical dominance acts as a component of medicalization, which also promotes medicalization (ibid).

While medicalization and medical dominance have both been subject to critique, I employ medicalization as a useful process in analyzing my data. However, critiques of medicalization often are rooted in its application to the field of psychiatry. These critiques are relevant in that they establish the process of medicalization entails a categorization of medical conditions,

symptoms, and problems into their relevant medical domains. This categorization, particularly concerning what is considered ‘psychological’, will serve as highly relevant in my analysis. Particularly, this connects Cassell’s discussion of mind-body dualism and suffering. Separation between mind and body (physical) arguably is normative in medicine and society. The processes in which conditions are medicalized, evaluated, and treated are thus impacted by mind-body dualism (Greco, 1998: 29). Therefore, the process of medicalization further contributes to the schism between mind and body (psychological and physical). This will prove itself highly significant when employed to the practice of EPAS in understanding how certain conditions and are treated with this underpinning philosophy.

3.4

C

ONCLUSION

In closing, I will outline how these three concepts serve as my theoretical framework throughout my analytical chapters. In my first chapter, I explore unbearable and hopeless suffering within EPAS. I will use Cassell’s (1998;1999) concept of ‘suffering’ as a starting point from which I will analyze the specific type of ‘unbearable’ suffering documented as sufficient to require EPAS. I explore the ways in which medicalization brings legitimacy to certain forms of suffering within EPAS. I employ Parsons’ (1951) ‘sick role’ as a potential legitimizing force in determining unbearable suffering. Moreover, my analysis in this chapter is framed by the understanding of ‘sufficient unbearable suffering’ being a role requirement of an EPAS death role.

In my second chapter, I delineate the role decisional competence plays is legitimizing patients’ suffering claims and acting as an EPAS death role requirement. Moreover, I highlight how the assessment of decisional competence has arguably become medicalized. I draw on sick-role non-compliance to examine its impact on judgments of decisional competence, and the possibility of this deviance being subject to medicalization.

In my final data chapter, I explore tensions between the relationship of suicide and EPAS. I examine the act of suicide as a potential object of medicalization. I offer considerations

concerning how this impacts physicians' understandings of patients’ suffering relative to their desire to die. I explore suicide as problematic both within Parsons’ traditional sick role and an EPAS death role-- thus, inflaming EPAS/suicide tensions within the practice. I then conclude with a discussion relating my three data chapters under the theoretical framework I have delineated in this chapter.

C

HAPTER

4:

M

ETHODOLOGY

4.1

D

ATA

C

OLLECTION

The core set of secondary qualitative data I used is comprised of EPAS patients’ judgment statements (JSs) and case summaries (CSs) (n=220) written by the RTE. JSs are the official legal documents produced for each EPAS case and CSs are a condensed version. The patient CSs I used (n=154) are publicly available online in English14 _{through the RTE’s annual reports (2002-2017).}

These cases are comprised of a variety of patients diagnosed with various disorders who received EPAS.

Additionally, I used JSs translated into English (n=66) for patients whose suffering was categorized as psychological in origin. I received these translations from Dr. Kim, who led the study “Euthanasia and Assisted Suicide of Patients With Psychiatric Disorders in the Netherlands 2011 to 2014”, published in JAMA Psychiatry in 201615_{. According to Kim et al. these translations}

were obtained by

“the National Institutes of Health Library’s translation services, which uses companies to provide certified medical translations. Subsequent questions about specific passages were addressed by a Dutch-speaking member of the research team (R.G.D.V.), who further conferred with native Dutch-speaking academics” (E2).

14 _{These English translations are provided by the RTE themselves and available on the English version of their}

website. While the RTE publishes some judgment statements in English, many cases are published solely in Dutch.

15 _{These translations are also used as data in the report, “Capacity Evaluations of Psychiatric Patients Requesting}

My data set also includes content from the RTE’s annual reports and ‘Code of Practice 2018’16_.

Beyond specific case details, these documents contain extended general discussions regarding EPAS.

4.2

D

ATA

D

ESCRIPTION

I analyzed the documents used in my data set as “active texts”. My data does “not simply reflect ‘reality’ but are another means through which the social world is constructed” (Warner, 2006: 225). Therefore, considering the production procedure of my data is critical. Physicians who complete EPAS are mandated to send the RTE a report. An RTE senior secretary categorizes these reports as ‘straightforward’ or ‘non-straightforward’. “Straightforward cases and the accompanying files are sent digitally to the committee— which consists of a lawyer, a physician and an expert on ethical or moral issues” (RTE, 2017:19). If due care criteria are satisfied, a secretary produces a JS. Non-straightforward cases warrant an immediate in-person meeting which leads to the RTE’s judgment. If the case is not in accordance with due-care criteria, a JS is sent to the public prosecutor. From these JSs, CSs are published in the RTE’s Annual Reports (RTE 2017).

Joanne Warner’s research (2006) highlighted how social workers defensively documented their work by emphasizing that they followed procedures to avoid possible negative repercussions of these documents becoming “documentary evidence” in future inquiry reports (2006: 225). In relation to my own research, EPAS physicians provide case information knowing the RTE reviews these details to make a legal judgment. Existing research suggests physicians are more likely to report patients’ suffering in ways they believe are “more convincing and more easily sympathized with by the review committees” (Rietjens et al., 2009b: 503). Therefore, I

16 _{The “Euthanasia Code of Practice 2018” and “RTE Annual Report 2017” are the most recent available English}

suggest that the details in EPAS’ CSs and JSs are potentially similar to the inquiry reports used in Warner’s research. Both are active texts that involve details reported in a defensive manner.

In sum, my research is framed by the following understanding of my core data set. My data are comprised of public documents, produced by the RTE, with an intention to inform legal authority and the general public of EPAS practice. These documents include case details which are based on physicians’ reported interpretations of their patients’ experiences. Consequently, my data represent a certain projected reality by the RTE, which is constructed by the RTE and physicians’ reporting. I do not consider my data a reality of EPAS patients’ experience. Instead, I regard my data “as ‘active texts17_{’ in the sense that they have the capacity for organizing social}

relations and expressing social power” (Warner, 2006:225). Therefore, my research questions and analysis pertain to the RTE’s projected narratives of EPAS patients’ reality through public documentation.

4.3

D

ATA

L

IMITATIONS

The language barrier between Dutch and English limits my data set, since not all RTE content is available in English.18 _{Moreover, translations are inherently limiting (Liamputtong}

2010). Therefore, I used a theme-oriented discourse analysis, where analytical themes “drawn primarily from sociology and linguistics shed light on how meaning is negotiated in interaction” (Roberts & Sarangi, 2005: 632). Commonly used in medical discourse analysis, this method allowed for a “slowing down” where I was able to uncover sociological themes within medicalized language (Roberts & Sarangi, 2005).

17 _{Active texts entail the use of the present tense often in my writing when referring to my data. However, given the}

content of these active texts, which involve past events and deceased patients, my writing often must use both present and past tense.

4.3.1

D

C

A further limitation of my research relates to cases involving a diagnosis of dementia. The RTE categorizes these as separate from psychological cases and other disorders. Like psychological cases, they require additional scrutiny and heightened attention. The 2017 RTE Annual Report’s foreword is dedicated to public debate and controversy over the inclusion of these cases within EPAS. During my data analysis, I originally included these cases in my data set. However, they are highly complex. I find these cases compelling within the context of my own research, yet dementia cases made up a small percentage of my data sample (1%). Though rich in detail, I am not confident that this sample size is large enough to include dementia cases in my analysis. Due to word constraints, my analysis would leave crucial aspects of these cases untouched. I recognize this limitation, but strongly contend these cases merit their own discrete study. As dementia cases are particularly relevant to patients’ decisional competence, I include a brief example case and discussion in my sixth chapter.

4.4

F

RAMEWORK

A

NALYSIS

I selected Framework Analysis and followed the five-step analytical process designed by Ritchie & Spencer.

1. Familiarization;

2. Identifying a thematic framework; 3. Indexing;

4. Charting; and

My research had the intent of “seeking to draw descriptive and/or explanatory conclusions clustered around themes” (Gale et. al, 2013:2). Framework Analysis is a popular method in multi-disciplinary research pertaining to health, predominantly because it does not require aligning with a singular theoretical framework (Gale, 2013).

Given that I used existing data, I had the advantage of an extended period of analysis. I spent my three months of fieldwork familiarizing myself with the extensive data set. I kept an intensive memo diary tracking key themes, ideas, and cases that emerged in my data. This helped me to build a preliminary thematic framework for my analysis. I used ATLAS.ti19 _{to index and}

chart my data. I then translated my preliminary thematic framework into a coding scheme, which became central to analyzing my data. This coding scheme was adapted and refined as my analysis evolved. Finally, after coding, I used Atlas.ti to pinpoint networks and connections based on my coding scheme.

4.5

C

OMPARATIVE

N

ARRATIVE

D

ISCOURSE

A

NALYSIS

Patient CSs and JSs are structured and read like a medical record, or physician’s notes. However, each account produces a narrative about the patient, reported by the physician, and written by the RTE. I compared these narratives (n=220) and analyzed the discourse that constructs them. I took a similar approach to Berring et al.’s (2015) study of mental health nursing staff records. Records were treated as a form of narratives, and discourse analysis was employed to highlight constructed aggression in the records. “Thus, discourses in healthcare records shape and maintain certain representations of patients, by allowing what is included and what is excluded” (298). Finally, I analyzed my data’s narratives under two overarching emic categories: cases categorized, by the RTE, as ‘psychological’ (n=90) or ‘non-psychological’ (n=130).

4.6

E

THICAL

C

ONSIDERATIONS

I applied Beauchamp & Childress’s (2001) four principles of biomedical ethics: respect for autonomy, beneficence, non-maleficence, and justice. Given that my research used existing public data, my ethical considerations focused on obtaining permissions and confirming ethical standards were met.

Respect for autonomy entails honoring individuals’ autonomy and obtaining necessary consent (Beauchamp & Childress, 2001). My research involved exclusively public documents that were already produced to fulfill this principle20_{. The RTE purposely omits details from published}

case files “that could be traced to individuals” (RTE 2017). Through personal correspondences, I obtained Dr. Kim’s consent to use his data in my own research (SY Kim, personal correspondence, Jan 18, 2019).

The principal of beneficence requires that research is performed to benefit those involved (Beauchamp & Childress, 2001). The aim of my research was not to critique EPAS policy. Rather, I explored specific elements of the practice, offering findings to potentially inform and refine the practice.

The goals of non-maleficence are to minimizing harm and ensure that the risks involved in research are properly communicated to the participants (Beauchamp & Childress, 2001). My research involves a highly sensitive and controversial topic. However, Sieber and Stanley (1988) argue that, while controversial topics should be approached with a constant heightened awareness of their nature, “shying away from controversial topics simply because they are controversial, is also an avoidance of responsibility” (55). Therefore, I minimized harm through constant considerations of the sensitivity of my topic.

20 _{For more information on this see the RTE’s page “Information for Researchers”} https://www.euthanasiecommissie.nl/de-toetsingscommissies/woordvoering-en-voorlichting/informatie-voor-onderzoekers

Finally, the fourth pillar, justice, requires fairness and equality amongst those impacted by research (Beauchamp & Childress, 2001). I applied this principle through considerations of how my research may impact future policy. I aimed to produce findings ultimately benefiting future EPAS patients, physicians, and the RTE.

4.7

R

EFLEXIVITY

While I have taken steps to minimize bias, it is a commonly held belief that research cannot be completely value-free. Therefore, disclosing personal related opinions and contemplating my own reflexivity is critical (Bryman, 2012: 39).

My interest in EPAS began in my undergraduate studies, where I was captivated by medical ethics and philosophy of death. These courses introduced me to euthanasia, from a philosophical viewpoint. However, I approached my research as a sociologist. While I discuss ethical topics, it is noteworthy how these debates impact EPAS, rather than the ethical debate itself.

My personal connection to the research originates in my own struggle with mental illness. Particularly, my continuous observations of how perceptions of mental health stigma and legitimacy have further impacted my own suffering. This experience inspired my research, yet I purposely chose a topic with less emotional connection.

Finally, I acknowledge that important cultural differences exist between the Dutch population included in this research and my own American culture. Furthermore, Dutch is not my native language. In an informal interview with a previous member of the RTE, I voiced my concern over this. He advised me that being an ‘outsider’ in this type of research had certain advantages; for example, I might be less likely to dismiss observations as normative. I remained

aware of my positionality and reviewed anthropological research on the concept of death in Dutch culture 21_.

C

HAPTER

5:

S

UFFERING

This first data chapter analyzes the representation of ‘sufficient and legitimate unbearable suffering’ in EPAS using a thematic analysis of the RTE’s documentation of patient suffering. I present themes that distinguish EPAS patients’ suffering as uniquely unbearable by employing Cassell’s (1999) holistic approach to suffering. I then denote potential legitimizing forces of suffering which were described as emerging from patients’ accounts. Using Parsons’ ‘sick role’ (1951), I establish how ‘unbearable and hopeless suffering’ is a requirement of an EPAS ‘death role’. I then explore how gaining access to an EPAS death role legitimizes patient suffering. I also analyze physician representation and the RTE’s judgments of patients’ suffering. My collective analysis will offer a view of what is being constructed as sufficient ‘unbearable and hopeless suffering’ within EPAS.

5.1

W

HAT IS

‘

SUFFERING

?’

Similar to Cassell’s (1999) notion of suffering, EPAS physicians are to regard suffering as a personal, subjective, multidimensional concept (RTE 2018). The RTE requires physicians to make a judgment of whether their patients’ suffering is both ‘unbearable’ and ‘hopeless’ enough to warrant EPAS.

Through thematic analysis of descriptions of patient suffering, I noted how patients are described to be both ‘suffering from’ different causes and also to be in what I regard as a ‘suffering state’. The ‘suffering from’ factors construct a patient’s ‘suffering state’. This ‘suffering state’ is akin to Cassell’s (1999) holistic concept of suffering. Physicians who receive EPAS requests must determine the overall ‘suffering state’ as unbearable. JSs usually begin with, “The patient’s suffering consisted of….”, and end with, “experienced his/her suffering as unbearable”. I term the middle portion that describes individual details of the case as ‘suffering froms’.

I use Patient A22 _{to illustrate the complex construction of a patient’s suffering state.}

Patient A’s case is regarded as ‘straightforward’ by the RTE and his JS is shorter in length than more complex cases. Even Patient A’s ‘straightforward’ case demonstrates the complexity of ‘suffering’. Within this short JS, the patient is described to be ‘suffering from’:

“severe skin cancer...metastases in lungs and brain...epileptic fits...condition deterioration...an incurable state...confusion...drowsiness...urinary and faecal incontinence...increasing inability to communicate...inability to walk...being bedridden... being completely dependent on others for personal care...the knowledge of future deterioration...the futility of the situation...the absence of any prospect of improvement...the loss of quality of life...and physical decline”.

- (RTE 2017 Annual Report)

The large breadth of ‘suffering froms’ is exemplified here and composes Patient A’s suffering state. The ‘suffering state’ becomes the object of the physician's judgment of unbearableness.

In sum, my distinction of ‘suffering from’ and ‘suffering state’ serves as an underlying basis for this chapter’s analysis. While I employ Cassell’s (1999) theory of suffering in my analysis, EPAS cases involve a unique type of ‘unbearable’ suffering, which I explore in the following section.

5.2

W

HAT MAKES SUFFERING

‘

UNBEARABLE

’?

Cassell’s theory (1999) on suffering highlights difficulties with diagnosing patients’ suffering. The RTE advises physicians to regard suffering as subjective and highly personal. However, physicians are still responsible for judging the unbearableness of patient suffering.

Beyond patients’ statements that suffering has become unbearable, it is difficult to determine when an individual’s suffering surpasses the unbearable threshold. My data lacked discussion regarding these uncertainties of the ‘unbearable’ threshold. Based on RTE’s documents alone, this ‘unbearable’ threshold assessment remains obscure.

My data did, however, contain descriptions of patients’ unbearable suffering. While coding my data for ‘suffering froms’ and ‘suffering state’ descriptions, I identified three general overarching themes in representations of an ‘unbearable and hopeless’ suffering state. These overarching themes are important in distinguishing between typical suffering and ‘unbearable and hopeless suffering’. I argue this is important because ‘unbearable and hopeless suffering’ is a critical EPAS death role requirement. Moreover, acceptance to an EPAS death role ultimately legitimizes a patient’s suffering as ‘unbearable and hopeless’ enough to warrant EPAS.

1. Perceived permanent loss

Patients are documented to perceive permanent loss in, for example, loss of mobility, dignity, ability to communicate, social connection, control, restful nights, memory, and autonomy. Cassell (1998) mentions ‘loss’ as a key component in a holistic understanding of suffering (136). However, based on descriptions of EPAS patients’ suffering, I infer the perceived permanence of these losses to cause suffering to surpass the unbearable threshold. Furthermore, this speaks to the ‘hopelessness’ of patients’ suffering required to receive EPAS. I use the expression ‘perceived loss’ because several cases reported patients were to consider their loss as being permanent while their physicians did not.

2. Feeling ‘trapped’

Accounts of patients’ unbearable suffering include what I regard as ‘trapped’ feelings. Patients describe feeling trapped within their mind, body, situation, house, hospital, environment, state, or condition and express a sense of desperation as recorded within EPAS. It is common for patients to beg physicians to aid them in dying.

3. Becoming ‘struggle-weary’

I use the term ‘struggle-weary’ to describe the exhaustion and frustration that patients have from attempts to alleviate illnesses and suffering. I illustrate this concept through the documented expressions of patients who wish to give up their struggle or find peace. Cassell’s discussion (1998: 129) of the regularity of additional suffering patients experience due to the course or treatment of their illness frames my use of the term ‘struggle-weary’. This term is well-suited to describe patients who refuse further treatment because their motivation and optimism appear lost. I suggest this description applies to all EPAS patients because they have reached a point of not wanting to continue in their current state. I hypothesize that ‘struggle-weary’ feelings push patients into an unbearable state of suffering.

I note in my analysis the presence of these three themes in every representation of patients’ suffering (n=220), some more explicit than others. Moreover, I recorded high levels of what I regard as empathy from physicians and RTE members in relation to these themes. I will now use two sample cases that exemplify these three elements of unbearableness to illustrate my findings.

Patient B (PsyJS 2014)

Patient B suffered for 34 years with, “schizophrenia, paranoid type, accompanied by chronic psychosis and increasing disintegration”. He spoke with his physician about euthanasia and after explicitly requesting EPAS, he suffered for 9 additional months before his death.

“The suffering of the patient consisted of prolonged psychological suffering which was accompanied by pain and fatigue. He became increasingly aware that he lived an important part of his life under the influence of his psychotic beliefs. He had no strength anymore to undertake something, like cooking or reading and suffered from neglect. He was afraid that in the future he would become more forgetful than he already was. Patient suffered the loss of his ability to maintain social and emotional contacts. He was lonely,

but could not stand having anybody around. He foresaw that he would become more and more dependent, but expected that he would not be able to accept help. Patient had lost control of his life and was afraid of losing his dignity in the final phase of his life. He suffered from terrible fears and could no longer experience joy, pleasure or zest for life” Patient B’s account explicitly records his losses. Implicitly, I consider loss in his symptoms of fatigue, which implies a loss of energy. Patient B was unable to experience joy or pleasure in life. This “no longer” is significant since it implies an ability once had and now lost.

I infer Patient B’s reported situational insight, combined with feeling unable to break free of his psychotic beliefs, lead to perceived entrapment. Additionally, I suggest Patient B is trapped by feeling lonely, and yet unable to stand the presence of others.

Finally, I find ‘struggle-weary’ implicit in the description of years attempting to treat Patient B’s conditions to no avail. His unforeseeable recovery led to intense fears of future deterioration. Therefore, I interpret Patient B’s strength was depleted in his struggle, thus, leading to unbearable suffering.

Patient C (PsyJS 2014)

Patient C, a woman between 80-90 years old, suffered and was extensively treated over 30 years for depression and occasional mania. Her depression worsened and warranted extensive electro-convulsion therapy and antidepressants during her last ten years.

“The patient’s suffering consisted of the fact that she no longer found any joy in life, no longer looked forward to visits from her children or grandchildren, and was afraid of everything. She feared getting up and going to bed, felt exhausted all day and had no energy to do anything. She had no hobbies and just sat on the couch. When she watched television she was unable to follow (the program). With the exception of her children she saw no one. She dared not venture outside because she feared questions that might be asked her. She only worried, had headaches (her head felt like a chunk of concrete),

suffered from palpitations and lack of appetite. In the last three years before her death she lost 26 kg (57.3 lbs.). The patient felt imprisoned in her house and in her body”.

I identify loss in the descriptions of what Patient C was no longer able to do in her life: find joy, look forward to visits from family, follow TV, and live a life free of fear. Moreover, Patient C experienced weight and appetite loss. Patient C’s suffering account contains an explicit reference to her ‘trapped’ feelings in regards to her perceived imprisonment in her house and body. Finally, Patient C’s suffering description suggests the element of ‘struggle-weary’ because she exhausted all treatment options. I infer Patient C had neither the energy nor motivation to continue to combat her state, rendering her suffering unbearable.

5.2.1

EPAS:

A

Cassell argues that a diagnosis must be made to relieve suffering (1999: 531). Within EPAS, I argue that the ‘diagnosis’ entails both a medical diagnosis and a diagnosis of the patients’ unbearable and hopeless suffering. An EPAS ‘diagnosis’ has been made upon approval of the patient’s request and following this ‘diagnosis’ is the alleviation of a patient’s unbearable suffering. However, complete relief from this form of suffering is achieved only through death. I infer this from documentation of patients’ shared implicit view of EPAS as their only alleviating treatment and from the accounts of patients begging for physician aid in dying or, conversely, in descriptions of patients as ‘hopeful’ after request approval (an EPAS diagnosis).

Patient D (2003 RTE Annual Report)

Patient D’s unbearable suffering originated from multiple medical diagnoses including multiple cancers and an inoperable brain tumor. He was facing intense physical decline, leaving him fully dependent and immobile. Despite his poor condition, his physician predicted that

Patient D could live several more years. I infer this prediction left him trapped in his body, which had lost most of its function given years of severe medical problems, and he had reached a point of struggle-weary.

“The patient told the independent physician (a SCEN physician) that he was suffering from increasing tiredness and that he had to spend much of the afternoon in bed. Recently he had no longer been able to read, which he greatly missed. He also indicated that he was falling more and more often and needed more and more care. He was tired of struggling and constantly having to adapt to increasing disability. He could no longer see any prospects or scope for improvement and found this situation intolerable. The independent physician could empathise with this. After the independent physician had made a positive recommendation, the patient felt at peace. In the period that followed the patient made a number of arrangements for the funeral and for taking leave of friends and relatives, and he went on a holiday specially organised for people who were ill”.

This excerpt exemplifies how a ‘diagnosis’ for Patient D is made by detailing his medical diagnosis and by diagnosing his unbearable and hopeless suffering. Once Patient D was diagnosed within EPAS and his request approved, Patient D’s alleviation of suffering began. I contend this is present in Patient D’s description of ‘peace’ after his request was approved.

In each EPAS case (n=220), I noted the presence of these elements of ‘unbearable suffering’. Moreover, the ‘diagnosis’ of this suffering entailing its relief through an EPAS death. While the specific details of patients’ suffering states differed, I found the general elements of the unbearable to be universal. These elements were present in both the categorized ‘psychological’ cases and ‘non-psychological’ EPAS cases which leads me to a critical reflection of physical and psychological suffering categorization.

5.3

P

HYSICAL VS

.

P

SYCHOLOGICAL

S

UFFERING

Within EPAS, there is a distinction between physical and psychological cases23_{. To}

conclude patients’ unbearable suffering as physical or psychological based on this categorization is problematic in light of the data. I acknowledge Cassell’s consideration of this distinction as a visible perpetuation of mind-body dualism in medicine (1998: 131). Cassell highlights how patients themselves do not categorize their own suffering as mental or physical. Instead, they experience their suffering holistically and in relation to their personhood (1998: 130). However, medical theory and practice is traditionally impacted by mind-body dualism, thus leading to tension (1998: 131). I argue these tensions are especially evident within EPAS cases.

Following Cassell, I return to my notion of ‘suffering from’ versus ‘suffering state’. In my data, no patients’ (n=0) “suffering state” were comprised of purely physical or psychological ‘suffering froms’. Therefore, it would be incorrect to conclude that patients were requesting EPAS for unbearable psychological or physical suffering alone. All patients (n=220) were suffering from a combination of both physical and mental factors. My findings support the impossibility to detangle the physical from the mental in suffering (Cassell 1999). I suggest accounts of the physical and mental go hand in hand, impacting each other in constructing a suffering state.

The ‘suffering froms’ also pose difficulty in categorization. For example, ‘dependence’ is the most frequent ‘suffering from’ in my data (n=93), but dependence itself is multidimensional. Some patients experience physical dependence (e.g., dependency on wheelchairs or ventilators) and others experience social dependence (e.g., patients requiring supervision in nursing homes). Others experience dependence as an emotional state (entailing feelings of embarrassment,

23 _{EPAS cases are categorized on their website into the following categories: Cancer, Cardiovascular disease,}

Combination of disorders, Dementia, Multiple geriatric syndromes, Neurological disorders, Other Conditions, Pulmonary disorders, and Psychiatric Disorders. However, per the RTE Code of Practice, EPAS cases regarded as ‘psychological cases’ entail additional scrutiny. The other categories are often addressed as ‘physical’ cases. Dementia cases also require additional scruitiny, but are not included in ‘psychological cases’. see more: