Ritualized Futility via Clinical Momentum at End of Life in the Intensive Care Unit:
An Ethical Inquiry into Moral Distress in Nurses as a Response to a Culturally Mediated
Healthcare System Failure
Thesis
Presented in Partial Fulfillment of the Requirements for the Degree Master of Arts in the
Graduate School of The Ohio State University
By
Anne Carey McClure, B.S.N., C.C.R.N.
Graduate Program in Bioethics
The Ohio State University
2020
Thesis Committee
Matthew Vest, Advisor
Courtney Thiele
Copyrighted by
Anne Carey McClure
2020
Abstract
Moral distress is often framed as arising from interpersonal conflict such as moral disagreement. Within the dynamics of disagreement, moral distress becomes linked to power differentials present between the conflicting parties. As such, the understanding of the concept has commonly become dependent on constraints inherent to the nurse’s professional role. Within this metanarrative of professional powerlessness, the proposed mitigation strategies have been narrowly focused. Given the widespread nature of moral distress they have also been largely ineffective.
While moral distress in nursing remains pervasive, the majority of Americans are not dying well. The institutionalized deathbed in modernity is unlike any that have come before it. This paper traces death’s trajectory of change exposing how technology and medicalization have come to authorize and direct the dying process. Spiritual needs of the dying have become obscured if not altogether denied. This has led to new rituals developing at the bedside of the dying. In the critical care environment, the ritualization of futility has become a culturally and institutionally mediated phenomenon.
Americans not dying well and moral distress development in nurses may stem from the same healthcare system failures. In this scenario, effective mitigation will require large scale change. The profession of nursing is poised to be an integral partner in the collaboration necessary to affect just such a transformative change. iii Dedication
This thesis is dedicated to a patient named Jaime
and countless others
iv
Acknowledgments
I would like to express my gratitude to each member of my Thesis Committee from The
Ohio State University’s Center for Bioethics and Medical Humanities: Courtney Thiele for her professional and personal guidance and for her attention and support. Dr. Matthew
Vest, especially, for his immense contribution to the development and refinement of this work and for his patience with me throughout the process. Additionally, Dr. Ryan Nash for his openness and incredibly meaningful insight into the things that truly matter in life.
I would like to extend my deepest thanks to Dr. Kathy H. Haugh and Ashley Hurst from
The University of Virginia’s School of Nursing for always seeming to believe that I can and should do more.
Finally, I am forever indebted to: My parents, Dan and Marion for their continual inspiration and for their help into this matter along with all of the others. My children,
Warner and Lucy for being wonderous and full of life. My husband, Chris, especially, without whom this would not have been possible. I have missed you very much throughout this process.
v
Vita
2017 to Present Graduate Student, Center for Bioethics and Medical
Humanities, The Ohio State University. Columbus, Ohio.
2017 B.S.N., U.V.A. School of Nursing, The University of
Virginia. Charlottesville, Virginia.
2012 to Present Registered Nurse, Intensive Care Unit, Henrico Doctors’
Hospitals. Richmond, Virginia.
2010 A.A.S. Nursing, School of Nursing and Allied Health, J.
Sargeant Reynolds College. Richmond, Virginia
Fields of Study
Major Field: Bioethics
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Table of Contents
Abstract ...... iii
Dedication ...... iv
Acknowledgments ...... v
Vita ...... vi
Chapter 1. Introduction ...... 1
Chapter 2. The Evolution of Dominant Attitudes Towards Death in Western Culture ... 14
2:1 The “Tamed Death” ...... 16
2:2. “One’s Own Death” ...... 17
2:3 “Thy Death” or “Death of the Other” ...... 18
2:4 “Forbidden Death” ...... 19
Chapter 3: Factors of Cultural Mediation ...... 23
3:1 Technology and the Temporal Horizon ...... 26
3:2 Technology: A Captivating Picture ...... 28
3:3 Technology unto Death: The Ritual of the Technic ...... 30 vii
3:4 Death Medicalized ...... 33
3:5 The Ambiguity of Medicalized Death ...... 38
3:6 Conclusion ...... 41
Chapter 4. Futility ...... 43
4:1. The Ethics of Futility ...... 49
4:2 The Reality of Futility ...... 52
4:3 Conclusion ...... 55
Chapter 5: The Ritualization of Futility at the End of Life ...... 57
5:1 The Disenchanted Ritualization of Futility ...... 58
5:2 Ritualized Futility in Service to the Personal Death Narrative ...... 60
5:3 Ritualized Futility in Service to Institutional Phenomenon ...... 63
5:4 Forces of the Institution: Clinical Momentum ...... 64
5:5 The Role of the Nurse ...... 69
5:6 Conclusion ...... 72
Chapter 6. Is Palliative Care the Solution? ...... 74
Bibliography ...... 86
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Chapter 1. Introduction
Because health care is a theater for the drama of human disability, suffering, and death, it occasions not just questions about the treatment of disease, the control of suffering, and the postponement and management of death, but reflection concerning the meaning of life, suffering, and death. Nowhere are questions about meaning more intrusive than in healthcare. Hospitals are the arena where disease, disability, and death play themselves out on humans. There is often devastating tragedy.
-Tristram Engelhardt (2000, p. 309).
The pinnacle of the modern healthcare system, the acute hospital, has layers of complexities that often evade the human sensorium. In this way, the acute hospital shares similarities with the human being. The profession of nursing, a foundational pillar of the modern healthcare system, is called to deliver human care that extends beyond the limitations of the physical, that is, beyond a sole focus on disease management and/or bodily comfort. Nursing does this by attending to the whole person, through consideration of both the physical and the unseen dimensions of well-being (American
Nurses Association, 2016). These unseen dimensions of well-being include
1
psychological, interpersonal, and spiritual aspects of the human condition (American
Nurses Association, 2016). It has become evident that when approaching the end of life, matters of these unseen dimensions of well-being, especially those of the spiritual dimension, take on an increased level significance (Institute of Medicine, 2015).
Unfortunately, the care and attention needed to address these matters is consistently perceived by patients and their loved ones to be lacking within the modern American healthcare system (Institute of Medicine, 2015).
Spirituality is a dynamic and intrinsic aspect of the human condition through which a sense of ultimate meaning, purpose and transcendence are derived (Puchalski,
Vitillo, Hull, & Reller, 2014). It is through this component of being that relationships to self, family, community, society, nature, the cosmos, the sacred and the divine are experienced and understood (Puchalski et al., 2014). Spiritual needs are those which transcend the physical realm and venture into dimensions of human value, meaning, purpose and/or communion/relationship with the divine, particularly as one is at the end of life. The failure to support a patient’s spiritual needs may be a major factor underpinning the finding that Americans do not die well (Institute of Medicine, 2015).
Unfortunately, the problem of not dying well in America has been framed superficially as a symptom of a problem that only leads to adverse effects in the patient portion of the healthcare population. However, it may be that the issues that have led to the crises of unmet spiritual needs in patients at the end of life are disseminated throughout all of the population of healthcare. If so, then how might this same problem
2
manifest in the non-patient sector of healthcare? It may well be that the expression of this systemic illness in those who give care is already well known. Perhaps it is going by the moniker moral distress. Moral distress is a troubling and pervasive phenomenon that may be more complex than it was once believed to be.
First introduced by American philosopher Andrew Jameton, moral distress was initially described in nurses and was originally proposed as arising as a consequence of nurses being “significantly morally constrained” in their healthcare roles (Jameton, 1984, p.6). In his 1984 work Nursing Practice: The Ethical Issues, Jameton described moral distress as stemming from a situation in which a nurse knows what action is morally
“right” but is institutionally constrained from carrying out that “right” course of moral action (p.6).
While identifying a single, cohesive definition of moral distress is something of a challenge, the “psychological distress” arising as a consequence of its development has been clearly defined and delineated (Morley, Ives, Bradbury-Jones, & Irvine, 2019, p.646). The costs of unaddressed moral distress can be quite significant for all aspects of healthcare. The personal cost for clinicians struggling with moral distress is immense as high levels of moral distress correlate with increased incidence of clinician burnout
(Epstein & Hamric, 2009). Burnout leads to higher staff turnover, with subsequent increases in institutional hiring, onboarding and training expenses (Pauly, Varcoe, &
Storch, 2012). Even so, those affected by moral distress and burnout generally do not just leave a specific institution, often they abandon the healthcare professions entirely (Pauly
3
et al., 2012). This abandonment occurs despite a growing population of individuals in need of healthcare (Pauly et al., 2012; Houghtaling, 2012; McCarthy & Gastmans, 2015;
Whitehead, Herbertson, Hamric, Epstein, & Fisher, 2015).
As the ramifications of high levels of moral distress extend to the patient, they can potentially lead to serious harm. There is evidence that moral distress is associated with a decreased quality of care, an increase in adverse patient events and outcomes, subpar levels of patient safety and reports of lower levels of patient satisfaction (Pauly et al.,
2012).
A multitude of proposals have been put forth to attempt to mitigate moral distress and its outcomes among healthcare professionals, nurses in particular. Many of these proposals attempt to decrease the incidence and severity of moral distress arising within nurses through the utilization of specialized tools. Most of these tools seem to have a lot in common as the majority of them are aimed at increasing levels of personal plasticity or personal resiliency within nurses. In other words, these tools seek to realign or reformulate factors associated with certain internal constraints believed to be associated with the formation of moral distress and moral residue (Epstein, & Hamric, 2009).
Despite the fact that Jameton’s initial definition of moral distress, which accompanied the introduction of the phenomenon into nursing literature, included the exact terminology “institutional constraints” (1984, p. 6), the movement focused on combatting moral distress has largely excluded the attempt to address, modify or eradicate any external forces that may be at work, institutional or other. Moral distress is
4
often seen as an outgrowth of interpersonal dispute (for example, stemming from disagreement between nurse and physician, or between nurse and patient/patient’s surrogate decision maker), or as a deficiency in personal or internal function or capabilities (including decreased coping abilities or increased levels of naivety).
Portraying moral distress as a personal issue in this way may contribute to the development of prospective remedies that are limited in focus and often, limited in benefit as well.
One well known and highly cited potential tool for the mitigation of moral distress is increasing personal levels of moral resiliency (American Nurses Association,
2017; Carse, & Rushton, 2017; Cummings, 2018; Epstein, & Hamric, 2009; Jameton,
2017; Lachman, 2016; Mealer, & Moss, 2016; Monteverde, 2016; Morley, Ives, &
Bradbury-Jones, 2019; Peter, 2013; Rushton, 2016; Rushton, 2017; Rushton, 2018;
Rushton, Kaszniak, & Halifax, 2018; Rushton, Schoonover-Shoffner, & Kennedy, 2017;
Sauerland, Marotta, Peinemann, Berndt, & Robichaux, 2014; Schroeter, 2017; Stutzer, &
Bylone, 2018; Young, & Rushton, 2017). Moral resiliency is defined as “the capacity of an individual to sustain or restore their integrity in response to moral complexity, confusion, distress or setbacks” (Epstein & Hamric, 2009).
Moral resilience is a response to moral distress if moral distress is a personal, individual and internally situated problem. As moral resiliency is promoted as the preeminent approach to lessen moral distress, there is a concerning portrayal of the locus of responsibility being concentrated, perhaps quite disproportionately, upon the
5
individual nurse. This in turn, draws a very limited picture of the phenomenon. Such a narrow framing of moral distress also neglects the possibility that external factors are most likely an acting influential force which has been infrequently suggested (Jameton,
1984; American Nurses Association, 2017). This ignores the possibility of any institutional, cultural and/or societal influences. Perhaps this is reflective of a certain learned helplessness internal to the institution of nursing itself, which may preclude the profession from believing it is able to pro-actively affect large scale social and healthcare system change. Whether it be learned helplessness or something else entirely, remedies focused solely on the internal atmosphere of the individual nurse will never foster large scale, systemic changes that may end up being necessary to combat moral distress in its true complexity.
This thesis will argue that moral distress is a development that may arise beyond characteristics located within the individual. In circumstances where moral distress arises as a consequence of external factors, effective mitigation will be dependent on solutions that exceed the confines of personal resiliency.
Nurse ethicists Ann Hamric and Elizabeth Epstein propose that moral distress is a possible outgrowth of healthcare providers being involuntarily complicit in an unethical act, while being powerless to change the situation (2017). If the term powerlessness in this definition refers to a dynamic of professional powerlessness as a result of the seemingly constrained autonomy inherent in the nurse’s role, then the current understanding of moral distress will necessitate increased scrutiny. This tends to promote
6
a metanarrative of professional powerlessness. However, the environment where moral distress levels are found to be the most severe are the same environments in which nurses practice with some of the highest levels of autonomous practice. Moral distress and the associated development of clinician burnout are commonly associated with individuals who care for critically ill patients (Fumis, Amarante, Nascimento & Junior, 2017; Moss,
Good, Gozal, Kleinpell, & Sessler, 2016; Johnson-Coyle, Opgenorth, Bellows, Dhaliwal,
Richardson-Carr, & Bagshaw, 2016; Whitehead et al., 2015; Wolf, Perhats, Delao, Moon,
Clark, & Zavotsky, 2016). Through intensive care protocols and specialized practice requirements, nursing staff in the intensive care unit generally have more autonomy in practice than the nurses who work on medical surgical units, or elsewhere, possess. In these ways, critical care nurses are more professionally empowered than most.
There are many differences between intensive care nursing and non-intensive care nursing in the acute care hospital. One difference of particular relevance is the treatment and care for the dying in the intensive care unit versus the treatment and care for the dying in the medical-surgical unit, or even the palliative care unit. The difference is not in death itself, but instead may be the actual type of dying that is routinely encountered within the intensive, or critical care environment. This type of death is fundamentally disparate from that of the others. The relative weight of the moral distress in the intensive care unit versus that of the other units has largely been ignored in the formulation of solutions to the problem of moral distress. In the intensive care unit, the investigation into moral distress in the face of death, outside of the negotiation and withdrawal of care,
7
seems slighted within the discussions about both moral distress and its prospective remedies, although such consideration is not entirely unheard of (Borhani, Mohammad,
& Roshanzadeh, 2015; Elpern, Covert, & Kleinpell, 2005; Epp, 2012; Hamric &
Blackhall, 2007; Mobley, Rady, Verheijde, Patel, & Larson, 2007; Piers, Azoulay, Ricou,
Dekeyser, Decruyenaere, Max, Michaisen, Maia, Owczuk, Rubultta, Depuydt, Meert,
Reyners, Aquilina, Bekaert, Van den Noortgate, Schrauwen, & Benoit, 2011; St. Ledger,
Begley, Reid, Prior, McAuley, & Blackwood, 2013).
According to Piers et al., moral distress in response to death and dying in the intensive care unit stems from needing to participate in difficult end-of-life conversations, artificially prolonging life with highly aggressive life-sustaining interventions and the increased potential for the delivery of inappropriate care (2011). The delivery of inappropriate care, better stated as inappropriate intervention (because any form of care can never really be inappropriate), is not simply inappropriate. It is also not simply non- beneficial, which is another suggested term offered for this concept. The use of the term inappropriate or non-beneficial in conjunction with the word intervention is ethically and morally problematic. These types of interventions are not just inappropriate or non- beneficial, as interventions of this nature have the capacity to inflict immense and irreversible harm.
The use of futile intervention is prevalent within the intensive care unit. In fact, studies have shown that as much as twenty percent of critical care interventions can be defined as futile (Huynh, Kleerup, Wiley, Savitsky, Guse, Garber, & Wenger, 2013). The
8
harm stemming from futility is not just a risk to the patient, according to Tristram
Engelhardt: “The improper use of medicine may lead patients, family members and caregivers into situations where… they may burden hearts or lead to cynicism born of misusing human energies and resources” (Engelhardt, 2000, p. 319).
Futile intervention at the natural end of life, as an example of an “improper use of medicine” as described by Engelhardt (2000, p. 319), leads to overarchingly negative, often traumatic death experiences. As such, the use of aggressive futile intervention certainly leads to situations in which, as Engelhardt suggests, the hearts of family members and caregivers certainly stand to become burdened (2000, p. 319). This
“burden” to the hearts of a patient’s family (Engelhardt, 2000, p. 319) in the face of futile intervention at the end of life in the intensive care unit may be made manifest as post- intensive care syndrome-family (Van Den Born-Van Zanten, Dongelmans, Dettling-
Ihnenfeldt, Vink, & Schaaf, 2016). This concept is discussed in greater depth in chapter
4:2, “The Reality of Futility.” As for the “burden” within the caregiver’s heart imparted by the use of futile intervention at the end of a patient’s life, it is the assertion of this work that this may be made manifest as a form of moral distress. In this light, moral distress and dying poorly represent an interconnected, dependent phenomenon. As such, moral distress may represent a novel and nuanced way to engage death and dying in healthcare. Perhaps this new vantage point can offer insights into the facilitation of better death and dying processes in modern American society. Mitigating dying poorly in
America would help patients, their families and the nurses acting as their caregivers too.
9
This thesis will posit that the rampant nature of futile intervention at the end of life constitutes a new and novel deathbed ritual of modernity and is a radical departure from previous rituals offered in the face of impending human death. Unlike the communal, familial and/or religiously mediated death rituals of the past, this new, contemporary ritual is enforced by general society along with the culture and structure of the institution of healthcare itself. This ritualization of futility unto death offers a nuanced insight into the development of moral distress in critical care nurses, not necessarily as the result of individuals’ weak characters, or interpersonal disagreement, but rather more fundamentally as a consequence of a culturally mediated, systemic healthcare failure.
Chapter two, “The Evolution of Dominant Attitudes Towards Death in Western
Culture” will offer a brief glimpse into the dominant social attitudes toward death and dying across the history of the West. Following the work on death and dying by French historian Philip Aries, major changes to approaches and responses to death that have occurred over time will be highlighted, especially those that have occurred throughout the past few centuries. Aries’ work draws on pivotal points in Western culture, including the rise of individualism, secularization and medicalization, the fall of the valuation of a culture of community and the deemphasis of the family. This approach helps illuminate how the Western, medicalized approach to death and dying in modernity is a very recent and historically unfamiliar way to meet life’s end. It may be an approach to the human end of life that we are not truly or adequately prepared to endure, witness, survive or facilitate, at least not in an uncomplicated fashion.
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In chapter three, “Factors of Cultural Mediation,” postmodern pluralism, competition between moral narratives due to the loss of a gods-eye perspective, refocuses human life and human death amid moral epistemological challenges and deficiencies. In this new era, after the rise of science, materialism and the technologic order, a new episteme of death ensues in which death becomes foreign, demands management and falls to the order of the technic.
This chapter shows how these viewpoints on human death led to profound implications for how death is approached in modernity. This chapter will explore the modern archetype of death as a medical event, where death is dispensed, managed, and placed within the realm of technology. This has led to a whole new type of liminal human existence, somewhere between living and dying, a type of death that pervades critical care, thanks to its highly technical demands. Modern medicalized dying is often a prolonged affair in which a cascade of organ system deaths culminates into a final physical death.
Chapter four, “Futility” will introduce the concept of futility in light of the previous chapters while exploring the reality of futile intervention and the ethics of futile intervention at the end of life in the intensive care unit. This chapter leads into chapter five, “The Ritualization of Futility at the End of Life,” which investigates the disenchanted nature of the modern clinical deathbed rituals. This chapter examines how ritualized futility may work to serve some individuals in their personal death narratives, but how more often such ritualized utilization of futility at the end of life is in service to
11
institutional, culturally mediated phenomenon. This undergirds why an institutional force like clinical momentum (Kruser, Cox, & Schwarze, 2017) works toward the ritualization of futility at the end of life as a default approach. The role of the nurse in ritualized futility is investigated. This investigation is followed by a cursory look into the possibilities related to the moral culpability of nurses involved in such scenarios, especially as this may act as an ancillary factor in the development of moral distress in nurses working in the intensive care unit and may necessitate consideration.
Chapter six, “Is Palliative Care the Solution?” examines palliative care as a mitigatory approach to the ritualization of futility and the subsequent development of moral distress in nurses. While palliative care has much to offer, the atmosphere of the intensive care unit may be too great a barrier for the achievement of an acceptable death even with the best palliative focuses and approaches. This thesis suggests that the more compelling answer is for death and dying at the natural end of one’s life to be moved far away from the intensive care unit to a place where death can be approached with a psychological, social and most importantly, spiritual focus aimed at wholeness, true human closure and wellbeing.
It stands to mention as the author of this work that I have faith in the institution and profession of nursing. I believe in humanity. Sometimes I almost hear song radiating from a cosmic scale playing ballads of what it truly means to be human. Occasionally, I even still sing to my patients. However, the journey leading to the construction of this thesis is one of a “burdened” heart. After many years of practice as a critical care
12
registered nurse in the intensive care unit I am inescapably haunted by many things and troubled by too many more. These are the things that have made it clear that what is most needed is a new episteme of death, one that entails a radical, large scale societal and healthcare change. If a death promoting human wellbeing and wholeness, surrounded by family and loved ones at home were normative, individuals at the end of life would certainly benefit. Family and loved ones would be strengthened against the development of post intensive care trauma. Additionally, a new generation of intensive care unit nurses could possibly avoid the development of moral distress. If so, these professionals could evade what may come to keep them up at night, the fear of what they may have to answer for through their care of others, despite only doing the normal work of critical care, when they, too, finally meet their maker.
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Chapter 2. The Evolution of Dominant Attitudes Towards Death in Western Culture
Examining trends of past and present influences and compelling change factors, as they relate to death, provides a compass for predicting and providing insight into future end-of-life experiences and death attitudes. For critically ill patients, this will be a fundamentally essential need. Understanding the cultural construction of death’s past is a necessary study to shape the optimization of a ‘good death’ within the continuing challenge of growing modern medical technological ability.
-Angela K. Banjar (2017, p. 34).
An array of historical changes in cultural attitudes toward death have been explicated through the work of French historian Philip Aries. While his early works are directed towards cultural approaches to life from the construction of childhood, his later works move along the human lifespan to focus on social attitudes toward death and dying across Western human history. Aries held criticisms of the culture of modernity in the
West, as he prized approaches to community, family and social relationships that retained characteristics of pre-modern Western cultural traditions (Nisbet, 1981). An antagonist of the secular tide, Aries opposed the increasing individualism and egocentric nature that he felt was propagated by the modern centralized state common in the West (Nisbet, 1981).
In Western Attitudes Toward Death: From the Middle Ages to the Present (1974)
Aries describes the evolution of a smattering of Western mentalities and customs directed
14
toward death from antiquity into modern times. Aries highlights four major change-points in the evolution of approaches to death throughout Western history (1974). These points are emblematic of major cultural changes in the West, such as the rise of individualization and secularization (Dekkers, 1995).
Aries developed what Robert Nisbet describes as a “specialized history” (1981, p.
7), utilizing techniques of psychohistory to deliver what Nisbet terms “a profoundly learned, richly detailed” history of cultural attitudes as they relate to human death in the
West over the last thousand years (1981, p. 7). Aries delivers details and descriptions of death rites and the cultural attitudes that have accompanied them. Aries approach is limited, and his work has the capacity for unconfronted bias since it is dependent on evidence that he was either motivated or able to uncover. Despite these possible shortcomings, Aries is able to formulate a work that offers a nuanced insight into the aspects highlighted throughout his history of cultural approaches to end of life. At the same time, he elucidates a trajectory of attitudes toward death in the West that underscores the transformed nature of death in modernity. Aries interprets the progression of attitudes toward death in the West as consisting of what he first terms
“Tamed Death” which becomes replaced by “One’s Own Death,” which morphs into
“Thy Death,” culminating with “Forbidden Death” (1974).
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2:1 The “Tamed Death”
The first and oldest attitudes toward death in the West described by Aries exists from antiquity to the early Middle Ages (1974). In the culture of the “Tamed Death,” a sense of oneness exists between human life and death (Porter, 1999). Death and dying acted as omnipresent characters in life. Death was accepted as a natural component of living and was uncontested as the earthly fate of the human species (Porter, 1999). Death in this view was yielded to by society. Thus, the encounter with death by the dying and their witnesses appeared to be quite tame (Porter, 1999). Death was simple. It was not ignored, contested or denied, it just was. Medicine of the time had little to offer the dying, so death was not seen as a medical event like it is today (Banjar, 2017). Death was a communal, familial, universal and accepted human event.
Visitations, pardoning from numerous companions, the recitation of prayers and the receiving of absolutions (Aries, 1974) offered a richness of human depth to the dying process. It allowed for tending to unseen dimensions of human wellbeing but did little to provide any physical comfort. The “Tamed Death” usually contained four essential elements: a sense of forewarning of death, the awaiting of an impending demise, communal involvement and a sense of coexistence between the living and the dead
(Aries, 1974). These elements were formational in familial and communal rituals that populated the deathbed of the “Tamed death” (Aries, 1974).
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2:2. “One’s Own Death”
As the passage of time brought the adoption of cultural change to the West, the cultural attitudes toward human death also underwent modification. Aries identifies a second cultural attitude toward death in the West arising around the eleventh century and persisting through the Middle Ages. This second cultural attitude toward death is termed
“One’s Own Death,” which is also sometimes referred to as “death of the self” (Aries,
1974, p. 26). Aries’ title for this period is due to repercussions from cultural shifts marked by new individualized and religious schematics (Aries, 1974). The previous familiarity with death seen during the “Tamed Death” was not lost, but it was somewhat altered. Within the changes Aries highlights in “One’s Own Death” is dying becoming re- situated from a simple, familial, and communal event into an event of a more cosmic nature. This was often a cosmically oriented and religiously inclined event for the dying individual, rich with liturgical performance (Aries, 1974). These liturgical performances had a common aim, that of targeting the understood ultimate evil, the evil of human sin.
The deathbed often became a stage for the pursuit of repentance and forgiveness, so that the dying individual could prepare for meeting their life after death. In this way, death became an event through which individuals were able to position a sense of meaning for their lives.
Some matters of death and dying often became viewed as aspects of a personal struggle against the possibility of eternal damnation (Thornton & Phillips, 2009). With 17
issues of such immense importance possibly hinging on aspects of the death and dying and those aspects still being very untimely and commonplace, especially among waves of plague, the deathbed rituals prescribed by the dominant Catholic Church became immortalized through the production of veritable “how-to” manuals on death and dying.
One such manual was the Ars moriendi which remains widely known in the contemporary Western culture today. It is within “One’s Own Death” that dying becomes understood within a moral context. Dying well is an achievement arising from decisions actively made to orient oneself away from earthly concerns as death approaches and instead turn to contemplate, face and submit to God (Thornton & Phillips, 2009).
2:3 “Thy Death” or “Death of the Other”
The first of Aries’ contemporary attitudes directed at death, which he labels “Thy
Death,” begins within the eighteenth century. Under “Thy Death,” attitudes toward death start to transition away from seeing death as a common destiny of the species and as a closure to a personal (religious) story of existence within the world. These attitudes instead begin to reflect a belief of death as a “disquieting” and “greedy” entity who inflicts a paradoxically beautiful violence upon intimate human relationships (Aries,
1974, p. 56). While still familiar and tame, death becomes envisioned as a “break,” or
“rupture” from the norms of human existence (Aries, 1974, p. 57). It is here that death comes to “shake” those close to the dying individual. The deathbed scene of “Thy Death” see new, foreign exhibitions of emotionalism (Aries, 1974, p. 59). This change in the 18
level of bystander emotionalism corresponds with the belief that death runs counter to what is normal in human life. A culture of mourning began to emerge, and the Western world became dotted with the construction of fanciful tombs (Dekkers, 1995). This new era of cultural attitudes toward death in the West placed emphasis on the memory of the deceased (Aries, 1974). To Aries this emphasis “conferred upon the dead a sort of immortality which was initially foreign” to the dominant Christianity of the West at this time (1974, p. 72). However, Aries asserts that this once foreign sense was increasingly embraced by a growing secularized population (Aries, 1974, p. 64).
The deathbed scene changed. Emotionalism usurped the passive and prayerful expressions as a growing intolerance for separation manifested as crying, gesticulating and inconsolability (Dekkers, 1995, p. 191). People were not simply moved by the deathbed events but by the very idea of death itself. Troubled not only by the death of their loved one and by their memory, larger Western society began to be troubled by the nature of death itself (Aries, 1974, p. 60).
2:4 “Forbidden Death”
Convinced that the culture of the United States played a “primordial role” in the extreme changes to Western attitudes toward death, Aries identified industrialization as a likely catalyst for the initiation of modernity’s “Forbidden Death” (1974, p. xi). Staring with the mid nineteenth century, Western societies, according to Aries, began exhibiting the effects of a “brutal revolution in traditional ideas and feelings” (1974, p. 84). The 19
familiar death interwoven with human history became “effaced” and was made to
“disappear,” becoming “shameful” and “forbidden” (Aries, 1974, p.84-85). From this came the notion that the dying should be shielded from knowing of their impending fate
(Aries, 1974, p. 86). Aries saw this as a natural outgrowth of the death intolerance he noted during “Death of the Other” (1974, p.86). Initially, dying individuals were spared direct communication about their condition as loved ones attempted to assume the burden of dying for them (Aries, 1974). However, this was rapidly replaced by a different sentiment arguing for protection against the imposition of sadness onto the loved ones of the dying individual (Aries, 1974). A subsequent sense of duty aimed at protecting broader society from the overwhelming sadness and emotion that comes with death and dying finally ensued (Aries, 1974).
This new culture of death underwent additional rapid, revolutionary change between 1930 and 1950 in response to the advent of public, widely accessible hospitals and healthcare systems (Aries, 1974). Death was completely and overwhelmingly reconfigured. Displaced from the home, the deathbed became a hospital bed. The local clergy who once tended to the dying process became replaced by doctors, nurses, and institutional healthcare staff. The proximity of friends and community slowly fell away from the death scene. Death embedded within the modern hospital is no longer a ritual, ceremonious affair, at least not in the familiar ways once valued in the past (Aries, 1974).
Not only did the location, supervision, and management of death change but death itself undertook an unprecedented transformation. Death changed from a medical event
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(Bendle, 2001) into a “technological phenomenon” (Aries, 1974, p.88). The “Forbidden
Death” must be authorized by healthcare, often allowed to proceed only through a cessation or withdrawal of treatment (Aries, 1974). Death subservient to the authority of modern Western healthcare left it to be treated as a commodity. Sometimes death would be portrayed as a form of therapy. Mainly, it was regarded as a failure of modern medicine, a reminder of their continued inability to ameliorate the human condition.
With profound insight Aries relays how the failure of death often looks in modernity. “Death has been dissected, cut into bits by a series of little steps, which finally makes it impossible to know which step was the real death, the one in which consciousness was lost, or the one in which breathing stopped” (Aries, 1974, p.88-89).
Often when contemporary death is authorized or allowed to progress, the dying individual is already unconscious; they are no longer whole. To Aries, the “great dramatic act of death” of the past has been replaced by “all of these little silent deaths”
(1974, p. 89). In turn, these little deaths have sapped the strength and patience of family and loved ones to wait for an unknown or prolonged period of time at the bedside of the dying, especially for a moment which has been stripped of much of its meaning (1974). A death in pieces indeed robs the act of dying of much of its meaning
Since the eighteenth century the focus of dying has moved from the dying individual to her family and ultimately to the “doctor and the hospital team” (Aries, 1974, p.88). This, according to Aries, leaves the doctors and the healthcare team as “masters” of death and ministers “of the moment as well as of the circumstances” of death via attempts
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to secure an “acceptable” death for the dying patient (1974, p.88). Aries notes that his use of an “acceptable” death truly means a death that is “tolerable” for survivors (1974, p.88).
Today this notion may also include a death that is acceptable and amenable to healthcare’s values, core-measures and best practice standards.
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Chapter 3: Factors of Cultural Mediation
In contemporary society, individuals often find themselves “left to frame their own moral and bioethical narrative without any canonical normative guidance. Each person becomes a quasi-God’s-eye perspective” (Engelhardt, 2017, p.95). As the
Enlightenment dawned, philosophers were convinced that reason would uncover certain universal truths, and they worked to solidify reason’s deliverance. However, reason was unable to secure the truth these philosophers were seeking. Engelhardt states that in their failure to secure universal truths, these philosophers instead loosed “postmodernity’s pluralism of competing moral narratives” (2017, p. 29).
In the afterglow of the Enlightenment’s failed promise of reason, “Hegel’s post- religious and post-metaphysical view of secular culture” ascended to primacy, marking the end of modernity (Engelhardt, 2017, p.22). Individuals become their own version of gods as they construct their own historically and socially conditioned personal narrative.
Thus, they are the “ultimate origin of, focus for, and judge of their own moral concerns”
(Engelhardt, 2017, p.94).
It is here, in the face of looming relativism and nihilism that the once understood moral choices of the past morph into the mere life-style choices of today (Engelhardt,
2017). This is a place defined by what Engelhardt terms the “condition of moral epistemological incapacity” (Engelhardt, 2017, p.15). Morality is cut loose from its canonical underpinnings, leaving truth to become relative. Thus, when disagreements
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arise, one can look neither to God nor to reason as a means of resolving them. They must succumb to the dominant secular narrative (Engelhardt, 2017). As a result of such moral disorder, instability arises as truth threatens to slide into an avalanche of relative subjectivism.
The truth regarding human death has not escaped the perils of post-modernity.
Death has become a phenomenon perceived to necessitate management. Once death was a natural, expected event of all human life. Today death often seems to be a strange and unknown entity. The process of dying can now be difficult to recognize. Sometimes death itself can be hard to identify. Often neither death nor dying appear to be met with any sense of anticipation. In the absence of such anticipation, death and dying commonly lack any thoughtful preparation. This new death of modernity brings profound implications for how death is approached by individuals, communities, healthcare systems and society as a whole. Americans, in general, are not well equipped for the experience of dying
(Dugdale, 2015).
Technology has made the pursuit of the prolongation of physical life in many clinical scenarios an actual reality. Employing the advanced science of medical technology easily gives way to viewing a patient through a scientific lens. Looking through this lens of science easily leads to a gaze clouded by scientific reductionism.
Historically, human death was a total and final event. In other words, the process of dying used to lead to a whole death in which the mind and the entirety of the body died simultaneously. With modern death subject to the scientific gaze, the whole death of the
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past has increasingly been reduced to a series of partial deaths which culminate into a final death. This is a death of one physiological system, followed by another physiological system and so on. In other words, death seems to be compiled by a multitude of deaths of human parts or pieces. Medical technology has radically altered human death and dying. A brief dive into the realm of medical technology will address how the rise of technology has changed man’s relationship to himself through the promise of perpetual innovation; how it has changed the nurse’s relationship to the patient through the technological imperative; and how it has changed death in contemporary modernity by becoming a mainstay of the modern deathbed ritual.
The final two sections of this chapter will explore how the medicalization of death has led to the existence of death ambiguity as a clinical reality. The unmet hopes of the
Enlightenment have spurred new and lofty aspirations which have given rise to today’s technological culture. New promises of post modernity have ensued after the loss of universal truths and the rise of relativism. Bishop asserts that “subjectivity may turn to the self as its own object of mastery” (Bishop, 2019, p. 29). Nietzsche notes that humanity has never previously lived in full comprehension of such nullity of the human condition (Nietzsche, 1968), and it has since been postulated that humanity cannot be expected to do so in an unproblematic fashion (Bendle, 2001, p.354).
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3:1 Technology and the Temporal Horizon
Death has fallen to the technological order. While technology and technological innovation in medicine and healthcare have offered unimaginable benefits to humanity, they may also lead to harm. In light of the vast and undeniable goods that have come from the use of medical technology in healthcare, looking into possible negative ramifications of technology’s use may seem unnecessary and even heretical. However, the presence of technology and the process of technological innovation may be associated with adverse effects, especially at the end of life.
It has been suggested that human finitude threatens all that is held dear to the mortal being (Dugdale, 2015). It has also been suggested that it is this human finitude that animates the production of medical technology (Dugdale, 2015). In the works of
Martin Heidegger, the production of medical technology may be seen as a subset of technology on the whole that ultimately obscures the finitude of the self (1996). To
Heidegger, the horizons of the abyss prior to one’s beginning and the horizon of the abyss after one’s ending are formative to one’s conception of time and being in the moment of the present (1996). In this way, there must be a view of these horizons for one to have an authentic existence now. According to Bishop, the death horizon and the formulation of death-time structures one’s experiences, the objects that emerge and the projects in which an individual engages (Bishop, 2012). Thus, the Heideggerian proposal is that in modernity, one’s death is a constructive force molding meaning, purpose and identity into a being over time (Heidegger, 1996). 26
However, Bishop relays that within the contemporary Western era of technology
“death seems far off” (2019, p.24). Bishop explores why today’s death feels so distant by first offering rather obvious culprits like the “compression of morbidity and mortality” that has followed improved treatment of disease and the postponement of death brought by modern technological advances (2019, p.24). Death becomes “delayed” and/or
“deferred,” as modern technological prowess has the capability of enabling people to exist for longer than ever before (Bishop, 2019, p.24). Bishop’s “compression of morbidity and mortality” has removed death from occupying one’s mind or influencing one’s being (2019, p.24). However, Bishop claims that alone these factors are not able to answer the question: “Why the meaning of death, and therefore the meaning of living, and therefore the meaning of aging, leads to this emptiness that so many feel at the end of their lives” (2019, p.24)? Evoking the work of Bernard Stiegler, Bishop pursues the thesis that Stiegler’s “modern technics” morph the temporal horizon, displacing the
Heideggerian notion of being unto death, ultimately shifting the capacity to picture
“purpose and meaning” in human life (2019, p.24).
Bishop finds that “technical objects shape the temporal horizon of being human”
(2019, p.24). Stiegler, in Technics and Time, Volume 1: The Fault of Epimetheus states that “industrial civilization rests on an ever more intense development of the process of permanent innovation. It results in a divorce, if not between culture and technics, at least between the rhythms of cultural evolution and the rhythms of technical evolution” (1998, p.15). Bishop offers his analysis of Stiegler’s claim:
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In other words, it is not simply that death is deferred in modern technological life.
Rather, the temporal horizon made possible by permanent innovation is expanded
beyond any human capacity to imagine one’s own being because of the open-
endedness, the indeterminacy of modern life. There is no sense of the end of time,
despite one’s terminal reality of an end of time, thus there is no way for one’s
projects, purposes, and meanings to emerge (2019, p.24).
An emptiness emerges within the self and a feeling of meaningless follows the self through the continuum of life and unto death. Modern technics have misplaced the compass of human life leaving one “without bearings for the direction of her life”
(Bishop, 2019, p. 25). Technology leaves one directionless, adrift and lost within a sea of the immediate continual moment of now.
3:2 Technology: A Captivating Picture
According to Bishop and contra Heidegger, technology is far more than just the materiality afforded to it, it is a way of “taking up with reality,” a way of seeing and constructing the world (2019, p. 28; 1977). Technology acts as a worldview. In this way, technology functions to allow one to perceive some aspects of reality while simultaneously barring other aspects of reality from view (Bishop, 2019, p. 28).
According to Bishop and Heidegger, it is through the technology that one creates a worldview that sees primarily power (2019; 1977).
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The belief, morality and ethos of the technologic culture of medicine and healthcare reflexively shapes the belief, morality and ethos of the culture of the larger society and vice versa. This is how the scientific approach through technological innovation has come to take hold of imagination in the public square (Bendle, 2001). The specter of the intensive care unit with its technical objects of innovation, the ventilators, continuous renal replacement machines, extracorporeal membrane oxygenation machines and so on, come to formulate the picture of aggressive critical care. Technology promises the human being perpetual innovation which comes to shape how one ponders one’s life, one’s relation to the world around them and to the ones that they love. According to
Bishop, technology’s promise of perpetual innovation has inspired a movement of technocratic dying (Bishop, 2018). In the lecture entitled Living in a Technical Age,
Ashley John Moyse explains that the normalization of the techno-power ontology within
Western culture has allowed technology to condition modern life (Moyse, 2017). Moyse relays that the technological conditioning of modern life has reached such a degree that ends of various human activities have consequently become pre-determined lacking any meaningful investigation (Moyse, 2017). Eric Cassell has found that medical technology has come to possess a life of its own beyond the control of practitioners and the reach of the public (1993). Cassell believes that technology’s life force is a result of its “capacity to induce wonder, root us in the immediate, remove ambiguity, increase certainty as well as its self-perpetuating character and its enhancement of power” (199, p. 23).
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3:3 Technology unto Death: The Ritual of the Technic
Cassell’s “self-perpetuating character” of technology (1993, p.23) exists alongside its capacity to “disrupt” how humanity has “imagined the world” (Bishop, 2019, p.25).
Historically, Western metaphysics has created a dichotomy between that which is living, and that which is not living, or inert (Bishop, 2019, p.25). Bishop explains that since technical beings are believed to be inert it is believed that humanity has dominion over them (2019). However, Bishop argues that “while technical beings are artificial, they are not merely inert things” (2019, p.25). According to Bishop, technical beings have a built- in telos that “push in directions beyond their intended design” (2019, p.25). Bishop continues, “in a way, technical beings have a kind of agency, and a kind of freedom, as they operate to enact automatically the historical purposes for which they were built. And these built-in tendencies take on a life of their own” (2019, p.25).
To illustrate this claim, Bishop draws from the use of the mechanical ventilator in the intensive care unit (2019, p. 25). The mechanical ventilator, sometimes referred to as a “respirator” or a “breathing machine” is a lifesaving technical object, an aggressive intervention and an ongoing treatment/therapy used to support failure of the respiratory system. Utilization of mechanical ventilators is very common in critical care units. In fact, the development of the mechanical ventilator was actually a major catalyst for the development of the modern intensive environment of care (Slutsky, 2015, p. 1107). The ventilator and the intensive care unit are inexorably linked. This technical object dictates the space of care as it is generally utilized in patients who are quite critically ill and the 30
machine itself is quite complex (Bishop, 2019, p. 26). Both the patient and the machine and the emerging patient/machine combination require constant monitoring. Patients who are on a ventilator must be treated by highly specialized, specifically trained healthcare professionals inside of a highly specialized technical area (Bishop, 2019, p. 26). As such, the mechanical ventilator is only able to be utilized in a very specific subset of healthcare in units that are usually designated as intensive or critical care.
Bishop highlights how technology relegates the environment in which care must be given/received and continues addressing how technology also acts to profoundly alter the relationship of care (2019, p. 25-26). The relationship between the caregivers and the receivers of care undergoes an immense change with the addition of the ventilator.
“There is more of a relationship between the healthcare providers and the machine and technical space than there is between the healthcare providers and the patient: the practitioners are there to support the smooth functioning of the machine” (Bishop, 2019, p. 25-26). Plus, to better tolerate the use of the ventilator and remain compliant with its function, the patient often must be at least mildly sedated. This imposes another alteration in the relationship between the caregiver and the receiver of care as the patient is made to look more like Bishop’s anticipatory corpse (2011) than they are allowed to resemble their own embodied selves. This relationship is consequently prohibited from experiencing full human engagement by both of the involved parties and as a result valuable dimensions to the relationship are lost.
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The technological tool called the ventilator does not submit to the “will of the caregivers” (Bishop, 2019, p. 26). Instead “the nursing staff and the physician are on-call to the machine” (Bishop, 2019, p. 26). The ventilator is in obvious control of the clinical space. Bishop highlights how the takeover of the respiratory automaticity of the patient by the ventilator externalizes the patient’s own respiratory drive and leaves it outside of her control (2019, p.25). Additionally, by “extending the practitioner’s ability to keep the patient breathing” while the practitioner engages in unassociated activities, the ventilator externalizes aspects of the practitioner’s abilities as well (Bishop, 2019, p. 26). The ventilator comes to function independently of both patient and practitioner.
The forces of the ventilator are encountered far outside of the ventilator’s actual use. When a patient develops respiratory distress, the life of the patient is often hinged dependently on the implementation of the machine (Bishop, 2019). The patient’s life is already portrayed as dependent on the technological intervention. Should she opt to deploy the ventilator as a tool, her life will then be “surrendered over to it” (Bishop,
2019, p. 26). In this way, the mere existence of the ventilator demands a moral choice from patients, practitioners and society generally. The patient must make the decision to deploy the use of the ventilator as a tool, or not. The practitioners must make the decision if the machine should be utilized or not. Society must decide if this technical object is acceptable to use or not. Moreover, the individuals within society are expected to decide if they will authorize such a modality for possible use in the future or not (Bishop, 2019).
Unfortunately, even when contemplated in advance these decisions are never considered
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“fully” or “soon” enough (Bishop, 2019, p. 26). “Thus, the technical object demands a moral choice, and the moral choice demands a formalized set of social techniques that govern the moral subjectivity of both patient and care providers” (Bishop, 2019, p.26).
Engaging in these formalized set of social techniques becomes somewhat ceremonial as these discussions are undertaken in a prescribed order through somber tones. Thus, through the technique of “social technics,” the ceremonial dive into “informed consent, advanced directives, and do not attempt resuscitation (DNAR) orders” become part of the
“ritual of technics” (Bishop, 2019, p.26) which now characterize modern death and dying.
It is easy to observe a modern preoccupation with technological objects and gadgets of the world. When these technical objects or gadgets are thought of as merely a tool, there is a natural desire to deploy the tool. After all, it may offer some kind of benefit. Tools help, to be sure, but they can also hurt. When the use of aggressive, technological tools is not based on an appropriate risk/benefit calculation, the actual harms that are caused may be lost under a blanket of assumed utility that accompanies the use of invasive technological tools, such as the ventilator.
3:4 Death Medicalized
Is death a medical event? Or is human death, perhaps, something more? A question such as this may sound odd to modern, Western ears. Modern Westerners are conditioned to see death generally as a medical event. However, not that long-ago, death 33
was positioned as a central feature of a massive cultural complex (Aries, 1974; Bendle,
2001, p. 361). This was Aries’ relatively stable death culture that persisted for millennia and offered “extremely complex and culturally far richer than that which now reigns in the contemporary world” (1974; Bendle, 2001, p. 361). As a result, death was considered a normal human event. There was no avenue through which to confront or challenge its approach. The majority of Western history saw a society in which “people did not have high expectations [and] all bowed before death”. However, this changed as “medicine grew conquering and commanding” (Porter, 1997, p. 716).
The new medicalized paradigm of death is both a factor and outgrowth of the shift from a spiritual to a technical understanding of death (Bendle, 2001, p. 361). Since death has been relieved of its prior cosmic significance, it has been evicted from public view, stripped of its once rich communal support and “institutionalized within a highly technologized healthcare system” (Bendle, 2001, p. 363). Death has come to be administered. Modern death is controlled by “specialist professional groups” within
“institutions” (Bendle, 2001, p. 363).
The institutionalized, administered and technological death results in a medicalized dying process “facilitated or prolonged” by medical intervention (Hetzler, &
Dugdale, 2018, p. 766). It is not the medicalization of death, per se, that is so concerning.
Rather, it is the forms of medicalized dying that are troubling. These lead to “aggressive extension” of life that is constitutive of a major cultural problem (Hetzler, & Dugdale,
2018, p. 767). It is within the new medicalized death paradigm that people are
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“transplanted” into the hospital/healthcare institution “in an attempt to rescue dying patients from death” (Hetzler, & Dugdale, 2018, p. 767). The medicalization of death tends to culminate into highly technological, aggressive violations with “tubes, restraints, mechanical hums, and beeps- all efforts to control what remains of life and to stave off death as long as possible… [it has] enabled patients, their families, and physicians to delay death without necessarily promoting the health and healing of patients” (Hetzler, &
Dugdale, 2018, p. 766).
Inside of this novel modern medicalized death paradigm, the normative approach for facing death has changed from “moral courage and spiritual insight to technical virtuosity…” (Porter, 1997, p. 699). Death is no longer a confrontation with a singular human truth and instead it has become a matter of healthcare-associated views of quality and performance. Death is now delivered in accordance with institutional imperatives and the values of healthcare bureaucracy (Bendle, 2001). These dynamics shift the focus away from the values of the dying individual and their loved ones in favor of those of the healthcare institutions. Consider the historical quest for the good death which was once sought through the use of the previously mentioned ars moriendi. This quest for the good death was an aspiration of the dying, their family, community and religious leaders united under a cosmic Western worldview. Now the achievement of a good death often seems more closely aligned with the accomplishment of professional performance standards of nurses or physicians.
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A good death is usually a difficult and complicated aspiration from within the healthcare institution. The hospital rarely seems like a place where anyone comes to die.
It more closely resembles a place where dying individuals come to be “almost miraculously” rescued from death (Porter, 1997, p. 692). This gives rise to an intractable contradiction between the “impossible hypothesis of success” and the unspoken certainty of ultimate failure (Porter, 1997, p. 692). Modern healthcare has adopted contemporary medicine’s telos of cure especially within the intensive care unit. This contributes to the common view of an institutional death as being a case of failure (Porter, 1977).
Attempted avoidance of such failures has led to goals of “rescue” which often means the
“prolongation of life at all costs” (Porter, 1997, p. 699). The view of death as a failure and the insistence of the possibility of a cure becomes “debilitating in its disempowerment of the patient, who is denied their agency in this ultimate phase of their life and reduced instead to the twin secondary statuses of spectator and object at their own death” (Bendle, 2001, p. 364).
In reality, death is not de facto a medical failure. Rescue or cure can simply be impossible or an inappropriate goal of care. Bioethicist Albert Jonsen illuminates the
“rule of rescue” in this way: “our moral response to the imminence of death demands that we rescue the doomed. We throw a rope to the drowning, rush into burning buildings to snatch the entrapped, dispatch teams to search for the snowbound” (Jonsen, 1986, p. 172-
174). He continues, “this rescue morality spills over into medical care, where our ropes are artificial hearts, our rush is the mobile critical care unit, our teams the transplant
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services” (Jonsen, 1986, p.172-174). According to Hetzler and Dugdale, "Jonsen suggests that the imperative to rescue becomes, in the face of death, compulsion that overrides rationality” (Hetzler, & Dugdale, 2018, p.768).
Hetzler and Dugdale invoke Nancy Jecker, a philosopher who asserts that there is no moral imperative grounding the “rule of rescue,” finding that it may actually imperil the principle of justice (Hetzler, & Dugdale, 2018, p.768). Jecker claims “the use of futile interventions as rescue, or attempted rescue, clouds our moral perception, making it difficult to identify the morally egregious features of what we are doing” (Jecker, 2013, p.64-81).
One interesting aspect of Jonsen’s “rule of rescue” (1986) is the dynamic between the one in need of rescue and the one who is doing the rescuing. “The locus of heroism in the previously profound personal drama shifts from the dying person and their family to the medical ensemble” (Bendle, 2001, p.363). The dying individual becomes misplaced within the narrative of their own death. It may be difficult to die well when the final paragraph in the story of one’s life is written about other people.
A medicalized death is one that is often so embedded within the operations, culture and goals of the healthcare institution that there is rarely a comprehensive assessment of the event by non-healthcare affiliated individuals. Even those who have witnessed the medicalized death of a loved one do not always understand what they have seen. They often have many questions about what actually transpired and why.
Frequently, non-healthcare associated members of society are not familiar with the
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language used within the healthcare environment. It may be that this healthcare language barrier plays a role in keeping discussions or investigations into medicalized deaths out of the public square. Perhaps this helps, in part, to keep from dispelling a larger societal belief that medicine and healthcare will overcome nature and that healthcare promises power and mastery over death (Bendle, 2001). However, it may be that just as healthcare medicalizes death, it also medicalizes reality. The medicalization of death seems to correspond with society largely accepting healthcare’s view that death is a medical scientific problem in need of a solution. Is the human approaching death best served by a death framed as a medical event? The dying and all of humankind may be better served if death was understood as something more.
3:5 The Ambiguity of Medicalized Death
Visually, the body of the sedated and ventilated patient in the intensive care unit appears eerily similar whether temporarily ill or actually dead (Dugdale, 2015). The physical presentation of patients undergoing critical care measures is often corpse-like.
The sedated patient seldom moves of their own volition. Commonly, these patients cannot speak or engage in any type of communication at all. Patients in the intensive care unit are often sedated, or sometimes sedated and paralyzed so that they tolerate the use of aggressive, invasive technological interventions. Whether stemming from the administration of critical care medications or due to the effects of devastating illness or injury, in the intensive care unit human life and human death can look nearly 38
interchangeable to the human eye. Medicalized approaches to death have confused the natural and visible indicators of death and dying. The distinction between living and dying being blurred in such a manner elucidates the rise of novel intermediary stages between health/life and death that has occurred within healthcare. There are so many different and new ways to bring patients back from the brink of death and sometimes with only partial recovery of one or more organs or organ systems (Schneiderman, &
Jecker, 2011, p.4). The continuum of life into death and vice versa appears to have become more fluid. This is ethically complex to consider as severely compromised or devastated individuals are being kept alive through medical or technological dependence.
These are people who may have no hope to further experience or participate in the most minimal, fundamental aspects of being human (Schneiderman, & Jecker, 2011, p.4).
Historically, death has been approached as a total human phenomenon (Dekkers,
1995, p.194). For most of humanity’s past, biological death coincided with personal death leading to one unified death between body and mind (Dekkers, 1995). One’s achievement of a total death signifies that one endured a dying process in totality (Dekkers, 1995). In the past, the borderline between life and death was not subject to compromise or variation. However, in contemporary Western societies the borderline between life and death can certainly be seen as variable (Dekkers, 1995, p.196). This variable borderline between the life and death within the modern healthcare paradigm has developed as death has escaped the confinement of being one singular event. This may lead to a type of human pre-mortem limbo as a state of being. Is the patient intractably dependent on
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invasive technological intervention and aggressive critical care still fully alive? Or, are they partially alive, perhaps mostly dead? What about the patient that cannot experience any aspect of human existence? What about when the human body is made to physically persist despite the human inhabitant seemingly being absent from the equation?
This is a death in slow motion. This is a death in human pieces. This is a death that reduces a human into mere physical material. This is a death that cannot acknowledge the unseen dimensions of human existence such as spirituality, let alone tend to them or protect them from harm. A medicalized death may be the result of a largely distorted view of life. This dominant cultural view sees human life as a mechanical, mechanistic process which is relegated only to the dimensions of the empirically knowable. This would mean that bodily matter must simply be made to engage in motion for human life to exist (Bishop, 2012). According to Bishop, a
“metaphysics of efficient causation and an epistemology of stasis will always result in a kind of violence, for one merely has to exert a greater force over the dying body in order to keep its matter in motion” (2012, p. 97).
An example of this “violence” referred to by Bishop (2012, p.97) is the use of invasive, aggressive interventions at the end of life. These measures are the greatest forces available for exertion over a dying body to be able to keep what Bishop terms
“matter in motion” (2012, p. 97). The target of what Bishop describes as “violence”
(2012, p. 97) is the individual dying patient in the intensive care unit, but the impacts of deploying such measures may be far more widespread than previously believed.
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3:6 Conclusion
In modernity, an unprecedented technocratic and medicalized approach to human death has become common place. The human being facing death in the healthcare system today is subject to a reductionistic gaze through a scientific lens. The prospect of death is manipulated by a technological worldview which has led to a movement involving invasive technological intervention as treatment at the end of life. Death, in turn, has become ambiguous in the intensive care unit. As living and dying have become more visually similar and sometimes indistinguishable, a once total death has been replaced.
Contemporary human death is often achieved after a cascading failure of one human physiologic system after another. This death in systems, or parts, has extended the period of time spent engaged in the process of dying. This prolonged dying process is supported, if not dependent on, aggressive, invasive intervention utilization at the end of life. The medicalized death is allowed to come to fruition with healthcare authorization, either through the granting of permission for death or through a failed attempt at death rescue.
Journeying through the end of life in such a way as this may be very distressing to those who must bear witness. One aspect of this technocratic, medicalized approach to death that has the capacity to incite heightened levels of psychological distress is when the invasive, aggressive technological interventions that are used to sustain life are implemented or continued with the goal of simply keeping physical “matter in motion”
(Bishop, 2012, p. 97). In this way, these interventions solely work to protract the process 41
of dying since they offer no prospect of true benefit. This is futile intervention at the end of life. Chapter four will investigate the ethics and reality of futility within the modern healthcare system, especially at the end of life.
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Chapter 4. Futility
Whenever medicine is used for any purpose or goal- however defined- that distorts, frustrates, or impairs its capacity to achieve its proper ends, it loses its integrity as a craft and its moral status as a human activity.
- Edmund Pellegrino (2007, p.64)
Despite major cultural changes to the common view of death, one factor remains constant. When asked how one would prefer to die, the answer remains the same: at home, presumably surrounded by loved ones (Institute of Medicine, 2015). If rather than asking how one would prefer to die, it was instead asked how long one would prefer to spend dying, what answers would be given? How long would someone like to spend engaged in the dying process? Without doubt, most would opt for a death that perhaps was to come more quickly.
It’s ironic, then, that in modern America a construction of death which denies these two realities has ensued. Today, death commonly occurs outside of the home, institutionalized within the healthcare system. These institutionalized and thus medicalized deaths may follow a dying process that have been prolonged over time. In
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the modern intensive care unit, dying individuals are frequently subject to some degree of familial/social isolation as visitation allowances for family members and loved ones is dictated by institutional guidelines and staff. Absent a previously written and duly notarized statement of specific patient wishes, or a surrogate decision maker who is well versed in the intricacies of a patient’s desires, death may follow a dying process extended by critical care intervention. This paradigm is seemingly designed, in these circumstances, to keep the human body physiologically functioning enough to support physical life, without consideration for any of the other dimensions that play a part in being human.
Is the pursuit of mere physiologic functioning really an end goal of healthcare? Is this what comes to mind when people of American society contemplate human life or human living? Or does society instead envision a full, whole person; a complete individual with thoughts, feelings, emotions, sensations and meaning? Since patients in the intensive care unit commonly are incapable of exercising their own autonomy, decisions are frequently made by surrogate decision makers. These individuals may, in the absence of previous meaningful discussions about such matters with the patient, request that “everything” be done to prolong the patient’s time on this earth.
One can see how this could be an easily adopted default position for such newly burdened decision makers. They are tasked with making decisions dealing in matters of life and death. There is no requirement that they have any sort of experience with making high stress decisions and they are not afforded training into optimizing decision making
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skill. Surrogate decision makers may be inadequately socially supported by family and/or friends, or the pillar of their usual support system may be the patient who is critically ill in the hospital bed. Even with experience in high stress decision making, with comprehensive teaching into and understanding of associated relevant matters and optimal levels of meaningful social support, it is still easy to understand why continued decisions for aggressive, invasive interventions may continue. When facing impending levels of immense grief, it may simply just be human to try to avoid or evade its arrival.
Whatever the reasons, interventions such as compressions, defibrillation, vasopressor administration, continuous renal replacement therapy, invasive mechanical ventilation, artificial nutrition and hydration, and even extracorporeal membrane oxygenation are often implemented as a result of the decisions made by patients or their surrogates in critical care. Aggressive measures such as these are becoming vital to the evolving narrative of death in Western modernity.
The growing paradigm of an increased or inflated level of patient/surrogate autonomy coupled with a decreased or deflated level of physician autonomy is thought to have led to heightened levels of implementation of some questionable medical treatments at the end of life (Blackhall, 1987). The shifting within the doctor-patient power dynamic has possibly underscored the use of treatments professionally judged to be futile, or even contraindicated, such as the widespread use of cardiopulmonary resuscitation (Blackhall,
1987). This changed power ontology sparked the emergence of medical futility as a concept in medical literature around the late 1980s (Helft, Siegler, & Lantos, 2000).
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In the Greek myth of the Danaides, the daughters of Danaus were punished by having to spend eternity fetching water with leaking vessels (Ov., Met., X). Each time one of the women returned to deliver their water into an empty basin they came to realize that they possessed an empty pitcher. Again, they would journey to replenish their leaking vessel eventually spending eternity in vain (Bonner, 1902). Zeus deals Sisyphus the punishment of repeatedly pushing a boulder up a hill, only to have it roll back down as he neared the summit (Hom., Od., XI) Both of these myths portray an exercise in futility.
Futility is defined as an action that cannot achieve its desired goal despite repeated efforts
(Ardagh, 2000), or as the “inadequacy to produce a result or bring about a required end; ineffectiveness” (Pellegrino, 2000, p.90). According to Engelhardt, “futility includes medical intervention that will not work at all, will not work often enough, will not achieve a worthwhile quality of life, or will not do so for a sufficient duration”
(Engelhardt & Khushf, 1995, p.329).
Utilization of the term futility has been debated (Brett, & McCullough, 2017). It has been proposed that futility is too strong or value-laden a choice in nomenclature and replacement terms like non-beneficial or medically inappropriate should instead be used
(Armstrong, Poku, & Burkle, 2014; Bosslet, Pope, Rubenfeld, Lo, Truog, Rushton, & Au,
2015; Fine, 2017; Marco, & Larkin, 2000; Nonbeneficial Treatment Working Group,
1999). However, the term futile has utility that many of its proposed replacements like non-beneficial or medically inappropriate lack. The latter do not do the potential of harm
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inherent to this phenomenon justice. Futile treatment, especially at the end of life can be much more than just non-beneficial and/or medically inappropriate.
The goals of medical treatment are to bring benefit to the patient, to restore, to heal, to make whole. These goals do not include treatments that will not achieve patient benefit (Schneiderman, & Jecker, 2011, p.8). Furthermore, effective, measurable improvement isolated to a piece of a person, to an organ system or simply in organ function, without appreciable benefit to the whole of the individual, is within the telos of medicine, nursing, or healthcare. When this materialistic, reductionistic viewpoint is applied to a human being in therapeutic goals, the human wholeness of the being is lost, ignored or even exploited. This medical scientific gaze, which pervades healthcare, and especially in the areas of critical care, often serves only to prolong suffering via a protracted dying process.
Futility, in this context, is not to be understood foremost as a moral principle, but rather as a means for prudential clinical judgement. According to American bioethicist
Edmund Pellegrino, futility, in the clinical sense, simply acknowledges “an illness or disease process has progressed to a point such that a proposed medical intervention can no longer serve the good of the patient” (2000, p.86). In this way, futility is not dependent upon value but instead is an “empirical appraisal of probable clinical outcome, benefit, and burden” (Pellegrino, 2000, p.90). Futility involves a prudential judgment insofar as it involves decisions about right behavior and wrong behavior when assessing when treatment should be vigorous versus when treatment should be desisted (Pellegrino, 2000,
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p.87). Pellegrino suggests that the moral aspect of futility is rooted in its responsible usage which should be grounded in the “deepest perceptions” about what it truly means to be human, fully human, and unified in existence as material and spiritual beings
(Pellegrino, 2000, p.87). This adheres to the notion that human beings manifest as an inherent unity of the body, the mind, and the spirit (ANA, 2010, p. 6),
Pellegrino’s assertion is consistent with provision 1.3 in the Code of Ethics for
Nurses which designates “optimal nursing care” as that which promotes “physical, emotional, social, and religious or spiritual well-being” (The American Nurses
Association, 2015, p.2). Pellegrino and The American Nurses Association make clear on a basic, foundational level, that being human is at least composed of more than just the physical body. It follows, then, that human life, health and wellness means something more than just prolonging basic physiological functioning to promote a merely physical existence. Decisions to withhold, withdraw or forego treatment should be framed within the particularities of the whole of the patient’s existence and being (Pellegrino, 2000, p.85).
There are those who argue that if a treatment can render any positive physiological effect within any single body system, this negates any concerns over futility (Schneiderman, & Jecker, 2011, p.9). This certainly seems to reduce an already reductionistic view to an even greater “mechanistic and biologically fragmented level,” further fracturing what it seems to mean to be human in the eyes of healthcare, and increasingly confusing the goals of medicine, nursing and healthcare (Schneiderman, &
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Jecker, 2011, p.9). This paradigm leads to a prolonged death slowed by “dissection” into many “silent deaths” described by Aries (1974, p. 89) as individual organ systems die, one after the other.
4:1. The Ethics of Futility
Futility achieves moral standing when it becomes a decision-making criterion. In this context it instantiates a definable approximation of good for the patient (Pellegrino,
2000, p.90). In this way, futility instantiates and delineates the principle of beneficence, for a particular individual, amid a specific clinical event (Pellegrino, 2000, p.90).
Historically, beneficence is the first principle of traditional medical ethics. Futility thus has moral weight because to medically treat or intervene when the treatment or intervention is prudentially, clinically determined to be futile is a violation of this principle of acting for the good of the patient (Pellegrino, 2000, p.89).
In modern American bioethics, the primacy of beneficence has been supplanted in many instances by the ethical principle of autonomy. It is out of this conflict between these two principles that the ethical debates arise. The principle of autonomy as the negative right of a patient to refuse healthcare treatment very quickly evolved into a positive right to share in participation of healthcare treatment decisions and medical trajectory overall (Pellegrino, 2000, p.100). This heightened valuation of autonomy has threatened to bridge into a patient right to dictate treatment, including the demand
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“everything” possible be done, even at the end of life, even in the event that the intervention has been clinically judged to be futile (Pellegrino, 2000, p.100).
It has been postulated that the notion of futility must be viewed through the lens of patient autonomy. Through this lens, as long as a medical treatment can achieve what the patient autonomously desires, it is not, and cannot be considered to be futile
(Schneiderman, & Jecker, 2011, p.9). Thankfully, however, healthcare practitioners cannot be forced into irrational practices (Pellegrino, 2000). There is a limit to what is acceptable, appropriate, ethical and legal in healthcare. When the principle of beneficence cannot prevail, or when the good of the patient cannot be attained, treatment need not be offered. If it is in use already, it should be withdrawn. To institute treatment amid futility is to act against the patient’s good, and, if the treatment is burdensome, it is to actually act with maleficence as well (Pellegrino, 2000, p.90).
If a treatment is found to be futile it ought not and need not be offered or utilized
(Pellegrino, 2000, p.96). With the judgment equation as prudential guide, Pellegrino warns of danger of misuse if the judgements are made based on faulty metaphysical, ethical and/or theological presumptions (Pellegrino, 2000, p.96). This is why quality-of- life determined judgements are highly questionable, coupled with the fact that quality of life is “an infinitely allowable term” (Pellegrino, 2000, p.97). Only a specific treatment, in application to a specific patient, and a precise, specific time can be denoted as futile
(Schneiderman, & Jecker, 2011, p.8). Conflating the futility of a treatment with that of a life is a serious affront upon human dignity (Pellegrino, 2000, p.98).
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How are designations of futility to be made? To start, futility as determined by economic considerations, driven by perceived stewardship of scarce resources, or based on distributive justice principles are also suspect, as futility is then determined by unnecessary, ancillary, inadequate justifications. Futility exists outside of these considerations. Medical intervention should be withheld when it is not indicated, without consideration of positive or negative financial implications, resource stewardship or justice.
The problem persists, however, that the language of futility is not univocal, and the delineation of a treatment or intervention as futile involves a qualitative judgement, at least in so far as related to what the goals of medicine truly are and what risk-benefit, or burden-benefit balance is appropriate, acceptable or desired. Underpinning the modern ethical conflict of futility are the answers to questions about what the goals of healthcare truly are, if society can generally come to agreement about if these goals of healthcare have or have not been met, and what actions should ensue if a treatment cannot or fails to achieve the goals of healthcare (Schneiderman, & Jecker, 2011, p.5). Therefore, it is necessary that “the definition of medical futility must rest on societal consensus, that includes specific ethical ideas, and actions, or choices that will reflect what is envisioned as healthcare and medicines purposes and ends” (Schneiderman, & Jecker, 2011, p.8).
Harkening Engelhardt, however, it is recalled that amid an intractable plurality of moral visions, the choices that truly matter are directed by individualized different understandings of the right and the good (Engelhardt, 2000, p. 355). Amid unchangeable
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plurality of moral world views, a definition of futility, which rests on societal consensus regarding moral issues is likely unrealistic. Even if futility is destined to remain an ambiguous concept eluding specific definition, its rampant presence and impact on
Western end of life is undeterred.
4:2 The Reality of Futility
Eighty percent of Americans report that they desire to die at home, but only about twenty percent actually will (Stanford School of Medicine, n.d.). Approximately sixty percent of the deaths in the United States occur in the acute care hospital. Twenty percent of these hospital deaths occur in the intensive care unit, where aggressive, invasive intervention are utilized in the final days of life (Avati, Jung, Harman, Downing, Ng, &
Shah, 2018). Over five million patients are admitted into intensive care units across the
United States annually (Society of Critical Care Medicine, n.d.). Mechanical ventilation is required by 20-40% of these ICU admissions (Society of Critical Care Medicine, n.d.) and the intensive care unit mortality within the United States is located somewhere between 10-29% (Society of Critical Care Medicine, n.d.) indicating that a large number of deaths are taking place under critical care.
Studies on the provision of potentially medically inappropriate treatment have found that nearly 90% of critical care physicians believe that futile treatment has been provided to intensive care unit patients (Mitchell, 2016). Close to 30% of critical care
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physicians believe that they have personally ordered and implemented inappropriate treatment (Mitchell, 2016).
Obviously, intensive levels of care result in higher financial costs which is, predictably, associated with greater implementation of invasive treatment modalities
(Chang & Shapiro, 2016), with no improvement in mortality. For instance, the use of mechanical ventilation and corresponding intensive care unit admissions has doubled for older Americans suffering from advanced dementia, increasing from 17% to 38% in those hospitalized in the last thirty days of life (Teno, Gozalo, Khandelwal, Curtis,
Meltzer, Engelberg, & Mor, 2016), despite a 2012 study suggesting that the increasing
ICU admissions for older adults, complete with aggressive, invasive intervention, offers no associated benefit to mortality (Boumendil, Angus, Guitonneau, Menn, Ginsburg,
Takun, Davido, Masmoudi, Doumenc, Pateron, Garrouste-Orgeas, Somme, Simon,
Aegerter & Guidet, 2012). In fact, the most striking feature of invasive, overly aggressive, non-beneficial or futile treatment is a reduced quality of life near death, coupled with perceptions of lower quality of delivered care (Huynh, Kleerup, Wiley,
Savitsky, Guse, Garber, & Wenger, 2013).
Non-beneficial and futile, unduly aggressive treatments in the intensive care environment also result in other unintended consequences, one of which perhaps merits heartfelt consideration. In the face of intrusive intervention in the intensive care unit there is an increased likelihood of developing symptoms associated with depression, anxiety, and post-traumatic stress disorder in survivors present in the intensive care unit with the
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patient (Andresen, Guic, Orellana, Diaz, & Castro, 2015, p.1). This cluster of symptoms is referred to as post-intensive care syndrome-family (Van Den Born-Van Zanten,
Dongelmans, Dettling-Ihnenfeldt, Vink, & Schaaf, 2016, p.173).
The high prevalence of post-traumatic stress disorder experienced by close relatives of intensive care unit patients is undergirded by the severity of the level of critical care intervention and treatment (Haines, Denehy, Skinner, Warrillow, & Berney,
2015). Signs and symptoms of post-traumatic stress disorder-family occur at higher levels in family members who witness these overly aggressive treatments (Haines et al., 2015, p.112). There are certain patient-specific factors that coincide with these adverse occurrences in loved ones. These factors include the patient’s age, the severity of the patient’s illness, interventions employed to treat the illness and the use of mechanical ventilation (Andresen et al., 2015, p.3). Symptoms of post intensive care syndrome- family, the most common being depressive symptoms, were present a year post intensive care unit stay of a surviving loved one, when that loved one was mechanically ventilated for forty-eight hours or more, with a prevalence of 22.8-29.0% (Haines et al., 2015, p.112). Post-traumatic stress disorder development in the loved ones of intensive care unit non-survivors, who were mechanically ventilated for forty-eight hours or more, after the passing of six months has a prevalence of 23%, a level similar to those obtained from those who have endured and survived massive, devastating earthquakes (Andresen et al.,
2015, p.3). There is conflicting evidence on the influence of patient death or survival on the development of these symptoms (Petrinic & Daly, 2016; Azoulay, Pochard, Kentish-
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Barnes, Cheveret, Aboab, Adrie, Annane, Bleichner, Bollaert, Darmon, Fassier, Galliot,
Garrouste-Orgeas, Gouleok, Goldgran-Toledano, Hayon, Jourdain, Kaidomar, & Laplace,
2005; Anderson et al., 2015; Pillai, Husainy, Aigalikar, & Vishwasrao, 2010; Mcadam,
Fonatine, White, Dracup, & Puntillo, 2012).
The development of psychological distress in response to the death of a patient in the intensive care unit, in comparison to those who lost a close loved one under the care of hospice, supports this claim. After the death of a loved one with cancer in the intensive care unit, informal caregivers showed a 21% prevalence of post-traumatic stress disorder symptoms after six months. In contrast, while those who lost a close loved one with cancer at home, while on hospice, showed a drastically reduced 4.4% prevalence post six months (Wright, Keating, Balboni, Matulonis, Block, & Prigerson, 2010). Thus, death does not appear to be the crux of the problem.
4:3 Conclusion
The use of unnecessary aggressive, invasive, life-sustaining critical care treatments and interventions at the natural end of life are fraught with challenges and contention, ethically and otherwise. The end goal of medical interventions should be to bring benefit to the patient in order to retain or regain the wellness and wholeness of the patient. There is a point at the natural end of life where illness, disease or degeneration of age-related changes progress to a point such that the implementation of aggressive intervention does not serve the best interest or the good of the patient. Futility must take 55
into context the material, physical dimension of the patient’s being along with the other aspects that come together to form the embodied whole of the human being. Prolonging physical existence at the natural end of life through aggressive intervention use prolongs time spent dying while neglecting the full dimensionality of the patient as a human being.
There are a substantial number of deaths that occur within the intensive care environment and the use of futile interventions in this environment of care is common and widespread. The deaths that ensue during the use of aggressive, futile intervention in the intensive care unit are often problematic for those who witness them. These loved ones may end up developing post-traumatic stress disorder-family as a response. The toll accompanying the use of such futile treatment at the end of life is substantial, with serious, severe ramifications flowing from the patient outward. Pellegrino summarizes this relaying that when futility is knowingly wielded it serves only “to deny the fact of human finitude and impose unnecessary effort, expense, and emotional trauma on the patient and on others” (Pellegrino, 2000, p.103).
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Chapter 5: The Ritualization of Futility at the End of Life
Health care practices focused on saving lives at all costs will in moral and spiritual terms cost far too much: the spiritual lives of both caregivers and care-receivers will be imperiled.
- Tristram Engelhardt, 2000
Rituals are a necessary, ubiquitous human force. Spanning the millennia of human existence, ceremonial, ordered, processional actions have permeated human societies, cultures and religions (Gordon, 2015, p.1). These routine, repetitive, ritualistic behaviors including praying, chanting, reciting and singing have commonly been used to situate human death within a construct of the universe based on religious, transcendent, metaphysical belief (Gordon, 2015, p.1) As such, these rituals have historically been imbued with deep symbolic, social, and cultural meaning, with a reach far exceeding the space-time housing the ritual itself (Philpin, 2002). With deep, meaningful importance, death/dying rituals were not, and are not, implemented solely for the benefit of the dying individual. They also offered, and continue to offer, the capacity for social, cultural, and/or religiously vetted guidance that can support and assist surviving loved ones
(Gordon, 2015, p.1). The rituals practiced along the human death continuum can bestow a sense of identity to both the deceased and their loved ones who suffer in the wake of loss
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(Behr & Cunningham, 2016, p.73). These rituals, chronicled throughout human society, culture and religion, allowed, and still allow, for loved ones of the dying to anticipate impending demise, adjust to such a new reality, and offer opportunities to uncover existential meaning (Gordon, 2015, p.1).
Currently, amid the progress of post modernity, it seems that the aged traditions of Western culture in facing human death, such as the assembling of loved ones, the recitation of prayers, familial activities of closure, rituals of religious blessings and the work of spiritual preparation, are being usurped by rationalized workings, institutional forces and reasoned “miracles” of the modern healthcare institution (Gordon, 2015, p.1).
5:1 The Disenchanted Ritualization of Futility
Modern life and death exist within a nonmagical, rationalized world, a world governed by the secular, reasoned culture and social scaffolding in which concern is directed primarily towards means and ends. At this point, this is what determines the nature of human response (Weber, 1946). This is the post-Enlightenment, scientifically mediated, disembodied, individualistic, medicalized world of high modernity. It is a place where caring is bureaucratized, where medicine is made machine. This is Max Weber’s modern milieu of disenchantment, a world devoid of mystery and wonder, a place marooned in the ever-present moment of “now”. A world where insight into the future of being is distorted by promises of perpetual innovation and a landscape ruled by techne, where human death may not be denied as much as it is placed into the realm of myth. 58
This terrain is guided by the immanent secularized narrative of a personal “gods eye perspective” (Engelhardt, 2000), a vista superficial to existential meaning, a location that has been primed to foster and support exploitation (Weber, 1946).
As the social, familial and communal rituals surrounding death of the past fall away, especially within the medicalized domain of the contemporary healthcare institution, emerging disenchanted death rituals of modernity are evolving to take their place. These novel death observances are increasingly visible within the healthcare environments rife with death, such as the intensive care (Cedola, & Prager, 2013, p.1013). Heavily guided by the flat affect of technological innovation, these novel, emerging disenchanted death rituals of modernity are characterized by the implementation of highly aggressive, invasive interventions that are futile and used unto death (Cedola, & Prager, 2013, p.1013).
It is within the intense institutional and technological environment of the intensive care unit that the ritualistic aspects of modern death ensue. The intensive care unit has its own sounds. All day and all night the intensive care unit is a cacophony of pumps beeping, ventilators humming, renal replacement machines bellowing, monitors wailing, blood pressure cuffs strumming, and so on. In the absence of other, more human and meaningful sounds such as the historically familiar praying, chanting and singing, technological sounds fill the ritualistic void of modernity (Gordon, 2015, p.7). Modern healthcare has in many ways replaced our personal, familial, and communal rites and rituals. All of these now antiquated ceremonial activities of cosmic dominion, with
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complex intervention and protocol, especially at the end of life, have been replaced
(Gordon, 2015, p.7). In this way, the last rites of the dying in secularized modernity fall to the dominion of invasive, aggressive, futile techne.
5:2 Ritualized Futility in Service to the Personal Death Narrative
Aggressive, invasive futility unto death at the request of the patient or more commonly, as the result of a patient’s surrogate decision maker, is a common paradigm in which futility is understood. This is the scenario of the unrelenting patient who, despite the understanding of her advanced illness still desires to have everything done. This is sometimes in service of a personal death narrative in which bravery and fight against impending death are central to one’s individual life story.
The requests for invasive, aggressive treatments by surrogate decision-makers, despite concerns that the implementation of such measures may not be in the best interest of the patient, have become integral in the construction of the ritual narrative of dying
(Bellemare, 2014). In seeking and permitting such aggressive, invasive and futile treatments, the surrogate decision-maker, usually a family member or loved one, can feel secure in their execution and fulfillment of their filial duty through adherence to societally ingrained assumptions about death and the dying process (Bellemare, 2014).
These assumptions about the dying trajectory and the use of aggressive, invasive interventions at end of life comport with what is “expected and available as part of the process of dying” (Bellemare, 2014). What is expected is not praying, or chanting, or 60
preparing but rather what is more easily and readily available, the new ritualized process of overly aggressive, invasive and probably harmful healthcare activity (Bellemare,
2014).
When futility is ritualized as part of the ritual narrative of dying, the constraints of clinical protocol and the impacts of institutional culture present a major challenge to healthcare providers as they attempt to balance requests for the most advanced, typically the most aggressive technological interventions against the provision of care that actually serves the patients’ best interests (Mohammed, & Peter, 2009, p.293). In the article entitled Rituals, Death and the Moral Practice of Medical Futility, authors Mohammed and Peter submit that the changes in healthcare treatment decision-making models from the previous paternalistic approach to the current model based on enhanced patient autonomy, have left patients and their surrogates able to request, and expect to receive, what are often aggressive treatments and interventions, even in the face of incurable illness (2009, p.292). This, according to Mohammed and Peter, has culminated in an increasing variety of clinical options being available, which are too “often permitted irrespective of prognosis” (2009, p.292-293).
Patients, families, physicians, and the entire healthcare team are impacted by the symbology of life sustaining technologies. However, these symbols can be deeply deceptive when they act to represent something that is beyond reality, that reality being that medicine has real but still quite limited efficacy.
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Although this type of ritualized futility may be directed by the patient or a surrogate, truly it is largely systemic. It is completely possible that the vast array of treatment and intervention options open to patients and their surrogates “irrespective” of patient prognosis (Mohammed and Peter, 2009, p.292-293), simply should not be available to patients outside of physician calculation of a favorable risk/benefit ratio.
Mohammed and Peter offer findings from a widespread Canadian survey of intensive care unit doctors and nurses evidencing the pervasive nature of futile practices in
Canadian intensive care units (Palda, Bownman, McLean, & Chapman, 2005). In this survey 95% of nurses and 87% of physicians “reported the use of futile care” (2009, p.
293). The authors state “Most often the request for such care came from the family”
(Mohammed, & Peter, 2009, p.293). Although the limitations of clinical protocols and influence of institutional culture is mentioned briefly in their article, the institutional aspect of the futility phenomenon, just as in most related disquisition, is not meaningfully investigated or discussed.
The institutional forces propelling the implementation and use of futile intervention at end of life are often overlooked, instead placing the locus of responsibility almost solely upon the requesting source. Placing culpability for healthcare mediated violations of patient beneficence onto the exercise of patient autonomy may not be a just scenario. This formulation suggests that this obviously pervasive futility phenomenon is a problem which potentially can be remedied by mediation between healthcare decision makers, such as the physician and the patient/surrogate decision maker. Unfortunately,
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the expansive and pervasive nature of futility might exceed the limits of this valid and potentially very meaningful endeavor.
5:3 Ritualized Futility in Service to Institutional Phenomenon
Institutions in healthcare come to house their own cultures and forces. Although the impact of political, bureaucratic and economic factors is paramount to institutional workings, they are beyond the scope of this thesis. These cultures and forces are nearly invisible aspects of healthcare institutions that are often made manifest through patterns of care (Mannion, & Davies, 2018) These nearly invisible aspects of healthcare institutions are often made manifest through patterns of care (Mannion, & Davies, 2018).
The less visible aspects of institutional culture are partially determined by what has been termed shared ways of thinking (Mannion, & Davies, 2018, p. 2). Shared ways of thinking are made up of the values and beliefs of the dominant groups functioning within the organization. These values and beliefs underpin the justifications and rationales for institutional activities, expectations, performance, and ideas about improvement
(Mannion, & Davies, 2018). Distal to shared ways of thinking inside of an institution are deeper shared assumptions (Mannion, & Davies, 2018, p. 2). These are predominately unconscious and unexamined assumptions that undergird daily healthcare activities of practice, including beliefs about professional roles and presuppositions about the individual and collective power of healthcare professionals within the healthcare organization (Mannion, & Davies, 2018). These deeper shared assumptions cultivate 63
ways of order as well as ways of knowing and represent a deeply rooted philosophy.
Within the culture of the modern medicalized West, filtered through institutional power dynamics and utilitarian interests, this philosophy overwhelmingly promotes actions which provide one-dimensional meaning, such as treatment and outcomes (Mannion, &
Davies, 2018). These are in contrast to motivations that promote actions which foster more multidimensional meaning that can, for example, derive from the enhancement of comfort, engagement in discussion, human contact and/or human relationship (Mannion,
& Davies, 2018).
5:4 Forces of the Institution: Clinical Momentum
The shared ways of thinking and deeper shared assumptions that construct institutional philosophy also coalesce within the hospital environment to create unseen institutional forces. One such force of the modern healthcare system recently introduced into academic literature is that of clinical momentum (Kruser, Cox, & Schwarze, 2017).
Proposed by Kruser et al. as a “latent, institutional, property of clinical activity” that acts to permit highly invasive, aggressive intervention in the intensive care unit via normalization of institutional practices, routines and standards (2017, p. 426). Clinical momentum has been also been described as the “curious expansion of interventions applied to patients in the intensive care unit without pause or design, leading to extensions of care that can violate patient wishes and distress clinicians” (Chapple, 2018).
These authors assert that clinical momentum motivates the provision of unwanted or 64
unnecessary care within the critical care environment that leads to a technological approach being the default pathway for dying today (Chapple, 2018; Kruser et al., 2017).
This default pathway is achieved through automatic interventions, like rituals, applied to deviations from normative formulations of physiologic norms (Kruser et al., 2017).
Kruser et al. identify four disparate behavioral patterns contributing to the force of clinical momentum (2017). One pattern of behavior these authors believe is underpinning clinical momentum is the cascade effect (Mold, & Stein, 1986; Callahan,
2009; Kruser et al., 2017) Coined by Mold and Stein in their 1986 article “The Cascade
Effect in the Clinical Care of Patients” the cascade effect is formulated as a series of events occurring with an increasing momentum in response to an initiating factor or triggering event. As this process progresses in a stepwise fashion it becomes increasingly difficult to stop the chain of mounting interventions (Mold, & Stein, 1986).
Also acting within clinical momentum are behaviors associated with the fix-it model (Koenig, 1988; Kruser et al., 2017) of healthcare decision-making. This is when decisions are made and enacted in response to a specific complication that work in isolation and thus fail to address the larger, wholly human picture (Koenig, 1988; Kruser et al., 2017). In addition to the system focused fix-it model of decision making, Kruser et al. also highlight recognition-primed decision-making and sunk cost effects as additional avenues through which isolated decision-making takes place (2017). Recognition-primed decision-making matches familiar patterns of patient symptoms with previously enacted actions patterns which are then reenacted without regard for patient specific factors
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(Kruser et al., 2017). According to Kruser et al., sunk cost effects works to deter change or cessation of a current course of clinical action for a patient when said course has already amassed substantial investment (2017). These are the decision-making pathways that propel the institutional force of clinical momentum (Kruser et al., 2017).
The result of these behavioral patterns is the escalation of care without any deliberation into specifics of the patient’s situation or discussion with the patient or her family about individual patient preferences or the probability of outcomes (Kruser et al.,
2017). This becomes increasingly true as patient physiologic activities deviate more substantially from the norm (Kruser et al., 2017), such as when someone at the end of life comes to face imminent death. Influenced by practice patterns and healthcare culture, this cascading phenomenon of clinical momentum leads to increasing usage of aggressive, invasive and technological intervention within the critical care environment (Kruser et al., 2017). These escalating levels of care are enacted without consideration into chances of functional recovery or long-term survival (Kruser et al., 2017). They also continue without any regard for the patient as a person. Clinical momentum ritualizes escalating application of invasive, aggressive, futile intervention at the bedside, especially as someone's death nears.
In the article “Clinical Momentum in the ICU” author Chapple, building on the article by Kruser et al., cites clinical momentum as one reason that dying patients are
“underserved” through a type of over-service in the intensive care unit (2018). Chapple places the behaviors propelling clinical momentum within a larger framework of “social
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forces that include both ritual and the reimbursement patterns in acute care” (2018, p.
781). Chapple places the behavioral practices underlying the cascade effect, the fix-it model and recognition-primed decision making as manifestations of ritualized intensification (2016; 2018). The ritual of intensification drives ritual of futility in the intensive care unit.
Clinical momentum and other outgrowths of the institution’s deeper shared assumptions may, indeed, be very closely intertwined. Outgrowths of the responsibility of rescue, the use of tangible somethings as opposed to the alternative perceived nothings, the demonstrations of commitment through futile grandstanding at the end of life are all byproducts of institutional beliefs that motivate institutional forces of action. For instance, an institutionally specific force of clinical momentum may include the use of aggressive, invasive, sometimes violent interventions unto death as a performance of intense commitment to the patient or family members that may be present
(Schneiderman, & Jecker, 2011). This performance would be utilized as an attempt to convince these observers that healthcare professionals are wielding their healthcare
“powers to the fullest” (Schneiderman, & Jecker, 2011, p.26). In this way, as a kind of symbolic quiescence (Edelman, 1972, 1977, 1985), the institutional order creates acts or even spectacles meant to impart a type of reassurance unto the spectator. In this case, the spectator would be reassured through the spectacle of a (futile) code blue that their
(institutionally presupposed) goal of the continuation of physiologic functioning of their loved one, at any cost, is actively under pursuit.
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Of course, the persistence of these spectacles within the institutionalized ritual of death may also be due to their potential function as a symbol that differentiates social responsibility of death (Timmermans, 1999; Tercier, 2002). In this situation, the spectacle of a (futile) code blue acts symbolically to rid the self or the institution of responsibility for the patient’s death through the physical actions involved in the aggressive, invasive and even violent actions of advanced cardiopulmonary life support protocols
(Timmermans, 1999; Tercier, 2002). However, just as with actions of the political order, these rituals, acts and/or spectacles only offer mere symbolic significance (Gusfield, &
Michalowicz, 1984). These symbols are deceptive in their representation of reality, they deny the truth of human finitude and ignore the limits of medicine.
Rituals of this nature, specifically the ritual of the code blue with implementation of advanced cardiac life support protocols with cardiopulmonary resuscitation at the end of life are vastly ineffective. The reality of success for patients who require inpatient, in- hospital cardiopulmonary resuscitation is around 16% (Girotra, Nallamothu, Spertus, Li,
Krumholz, & Chan, 2013). This rate decreases linearly by 3% every 5 years gained over the age 64 when it is utilized in older persons (Segal, Pompeo, Escutnaire, Wiel, Dumont,
Castra, Tazaroute, Khoury, Gueugniaud, & Hubert, 2018). With a best possible survival rate of 16% for patients under the age of 64 (not taking into account any associated adverse effects) cardiopulmonary resuscitation must act as a symbol for something, otherwise it becomes very difficult to explain how it continues to be the default, standard of care for everyone within a hospital who embarks on an un-permitted death, whether
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they are a neonate or someone aged ninety-three. As a standard default response to unauthorized dying, cardiopulmonary resuscitation and the whole spectacle of the code blue are not justified by their actual outcomes. As ritual and symbolic ritual, endeavors such as the code blue may lend more effect to the beliefs of observers acting to make authoritative an unrealistic approach to death and the shared healthcare/institutional beliefs which underlie it. Such a ritual at its worst could be viewed as a component of a type of value colonialism. At its least, it should be viewed as an invitation for meaning consideration of the self-referencing and self-validating behavior of the healthcare machine, but these issues are far beyond the breadth of this thesis.
Institutional forces such as clinical momentum promote aggressive, invasive, technological futility at the end of life. This revelation creates a space for a novel perspective of healthcare providers and their role in the provision of futile intervention at the end of life. While most conversations about futility focus on the professionally empowered role of the physician, investigations into institutional forces like clinical momentum provide a novel opportunity to examine the disempowered role of the nurse in such futility debates.
5:5 The Role of the Nurse
Nurses are encumbered by the problems of healthcare related futility at a greater incidence than physicians (Frick, Uehlinger, & Zenklusen, 2003). This is not shocking, especially for nurses working within the intensive care environment. Critical care nurses 69
navigate the boundaries of life and death within immediate proximity of patients and their loved ones. From this position, critical care nurses assist to implement, manage and negotiate the highly aggressive and invasive technological interventions that define the intensive care unit environment. These nurses witness the impact that these modern miracles of medicine can impart onto the human being. Manipulating the laminal space between the life and death of another being can give one a nuanced perspective.
It is often suggested that nurses are severely constrained by their role in the healthcare institution and overall healthcare system (Jameton, 2017). In light of this view of constraint it is commonly claimed that nurses must carry out interventions, even futile interventions, “irrespective of their own ethical standpoint” (Gutierrez, 2005;
Mohammed, & Peter, 2009). This certainly creates a metanarrative of powerlessness for the profession especially amid the suggestions that “nurses are not free to be moral”
(Yarling, & McElmurry, 1986, p. 63). This thesis envisions the profession of nursing as being highly empowered and capable of affecting large scale change.
Nurses may have more responsibility for the care delivered to patients than cursory looks guided by visible professional power dynamics may suggest. While it may be true that nurses must meet their professional duties within medicine’s hegemony over healthcare, a lack of more formal, validated power does not mean that the profession of nursing is powerless. Perhaps nurses are simply using a different currency of power.
Registered nurses are subject to both organizational and hierarchical constraints and they certainly are less endowed with formal power than many other members of the
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healthcare team, including clinical administrators, the physician, and other prescriptive providers (Paynton, 2008). This deficiency of easily discernible, normative power does not leave the nurse powerless in the type of care she delivers, nor does it necessarily leave her overly or significantly constrained. It also does not leave the nurse in a position where she is “not free to be moral” (Yarling, & McElmurry, 1986, p. 63).
In “The Informal Power of Nurses for Promoting Patient Care” author S. Paynton reveals that nurses “use informal power strategies to reach intended patient outcomes when formal constraints prevent them from doing so” (Paynton, 2008) Nurses may deal in currencies of power derived from access to and distribution of information that is uniquely available to them via their immediate access to patients (Paynton, 2008). In fact, nurses are able to wield their unique, informal power to lessen both hierarchical and structural confines in order to secure proper care for patients (Paynton, 2008). When nurses believe that the organization and/or physician process led to an expectation of inappropriate care, nurses involved in Paynton’s qualitative analysis study “chose to utilize significant informal power” to remedy the situation (Paynton, 2008)
Due to the availability of unique and accessible information about patients, nurses take on “significant decision-making responsibilities" (Paynton, 2008). These responsibilities persist even when said decision making is not properly sanctioned by the formal lines of power of the healthcare administrators or physicians (Paynton, 2008).
Paynton found that in general nurses obliged the normative formalized power systems within the healthcare environment until instances emerge in which nurses encounter care
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believed to be inappropriate (2008). In these situations, nurses responded by exercising their substantial but informal power to foster change mainly in service to their duty as advocate for the patients for whom they care (Paynton, 2008). Through the use of informal power currencies nurses do have the potential to substantially influence patient care.
Indeed, nurses are not powerless. They are not simply actors that must blindly follow authoritative decrees while disregarding their own ethical and moral directives.
Nurses are flush with information which acts as an informal currency of power, but this is not the only avenue through which power is obtained. Nurses are integral members of the healthcare institution and they also comprise a significant portion of the healthcare team.
As such, nurses are invaluable contributors to the formulation of both the shared ways of thinking and deeper shared assumptions which act to shape institutional culture and intuitional philosophies directing forces, such as clinical momentum dictating covert patterns of care. This implies that nurses have the positioning to affect change regarding the use of overly aggressive, invasive, futile measures at the end of life. It also implies that nurses may be more morally culpable for these measures being implemented and utilized than has been explored.
5:6 Conclusion
Disenchanted death rituals of modernity are characterized by implementing aggressive, invasive, technological interventions that are futile in response to impending 72
death at the natural end of life. The last rites of secularized modernity are of aggressive and futile techne. These endeavors do not reflect the reality of human finitude or the reality of the limits of modern medicine.
Healthcare institutions have their own forces arising from deeply seated institutional philosophies formed by shared ways of thinking and deeper shared assumptions created by the individuals who work within the facility. It is from these deeper communal aspects of institutional thought and belief that clinical momentum derives its force. Clinical momentum is a cascading phenomenon which may lead to and reinforce the increasing use of aggressive, invasive and technological intervention in the face of death. In this way, clinical momentum may be a major actor in ritualizing futility at the natural end of life.
Knowing that clinical momentum derives its force from an institutional philosophy that nurses help to create and knowing that clinical momentum gives rise to a cascade of overly aggressive, futile intervention at the end of life, nursing is offered one avenue through which it can act toward lessening the development of moral distress.
More importantly, working to decrease moral distress development in this manner would also help to remedy the reason why some Americans do not die well.
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Chapter 6. Is Palliative Care the Solution?
The force of clinical momentum propelling care in the clinical setting can easily lead to a nightmare scenario: oxygen administration quickly turns into non-invasive positive pressure ventilation, which then rapidly devolves into invasive positive pressure ventilation. The combination of stress and medication involved in intubation then necessitates central vascular access placement for pressor support administration. The following days bring emergent temporary dialysis catheter placement due to the acute kidney injury resulting from the previous hypotension. The temporary dialysis access placement leads to the initiation of continuous renal replacement therapy. At this juncture, technologic machinery overwhelms the room. The patient fails to improve, necessitating prolonged mechanical ventilation. Stagnating attempts at ventilator weaning necessitates tracheostomy placement, with the associated PEG tube insertion for sustained administration of nutrition. What begins as a rapid response by intensive care nurses on a medical unit of a community hospital metastasizes into a self-referencing construct of excessive, burdensome and possibly, unwanted, care.
The next day, or perhaps ten, fourteen, even twenty-five days later, an elderly woman, exhausted and emotionally drained, surveys the medicalized, technic, utterly 74
foreign surroundings of her husband’s room. She returns her focus to the man lying in the hospital bed, the man she adores, who is now more distant from her than he has ever been. This man, the love of her life, is physically located within mere feet of her but paradoxically, he has truly never been so far away. This is the man whose voice she would pay anything to hear. Now, however, he lies in his silence, animated only by mechanical forces. It is not his voice, but the electronic hum and whir of machines that she hears. Bewildered, she sits down in the chair by the door that was purchased not for its comfort but because it is easy to clean, the unwelcoming crunching plastic causing her to perch on the forward edge of the seat. Oblivious to her discomfort, she pushes back her nearly unkempt hair softly, repeatedly asking “how in the world did we even get here?”
But she’s not the only one in turmoil. At that very moment a critical care nurse, exhausted, physically and emotionally spent, sits at the nursing station to make her end- of-shift chart notes. Her chair is also uncomfortable, but it is okay because it keeps her awake. To get her thoughts in order, she needs to block out the mechanical sounds that occupied so much of her evening. She also needs to block out thoughts of all of the interventions she performed and the pain they likely caused, things that she did despite all the while knowing that the outcome will be inevitable. She tries to justify these things in her mind, but that just takes her down a rabbit hole. Knowing better than to go there, she abruptly brings herself back to the task at hand. Writing in the chart she pushes back her nearly unkempt hair, all the while asking, “how did we get here?”
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Palliative care may offer a sort of speedbump to the road of clinical momentum.
Palliative care offers a patient and family-centered approach to care, with the goal of providing relief to the symptom burden of patients during illness, while working to enhance the patient’s perception of their quality of life (Wolf, White, Epstein, & Enfield,
2019). The implementation of palliative care can occur amid any type of illness, whether it be acute, chronic or terminal in nature (Wolf et al., 2019). It can be utilized with patients anywhere along the spectrum of healthcare treatment and intervention, from those undergoing aggressive, even life sustaining intervention, to those who find themselves at the end of life, “when such treatment is no longer warranted” (Wolf et al.,
2019, p. 38, italics added). Palliative care addresses the burden of symptoms arising from the physical body of the patient while also working to address those that may stem from other sources, including those of a psychological, social or spiritual nature (Mercadante,
Gregoretti, & Cortegiani, 2018).
The intensive care unit is often populated by patients at the end of life who are fighting to die, and the intensive care unit increasingly fights back. There is an increasing incidence of aggressive interventions, such as life supportive measures, being utilized in patients who possess poor prognoses in intensive care units (Wunsch, Linde-Zwirble,
Harrison, Barnato, Rowan, & Angus, 2009; Teno, Gozalo, Bynum, Leland, Miller,
Morden, Scupp, Goodman, & Mor, 2013).
A shift from the normative approach focused on the patient’s disease, to a palliative approach focused on the relief of suffering or symptom burdens could aid in
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curbing the amount of excessive and aggressive treatments that are delivered in the critical care environment. It is clear that moral distress can be linked to such excessive, overly aggressive and futile interventions, which have the capacity to cause unnecessary suffering (Gutierrez, 2005). Reducing this moral distress could be a secondary goal of palliative care, as it seeks to mitigate the symptom burden of patients and the family and to avoid unnecessary suffering.
In a recent investigation into palliative care and moral distress in critical care nurses, significant differences in levels of moral distress based on the nurses’ perceived usage of palliative care services were reported (Wolf et al., 2019). When palliative care services were felt to be frequently and appropriately employed, respondents tended to report lower levels of moral distress (Wolf et al., 2019). Respondents in this study indicated higher levels of moral distress when patients under their care had unmet palliative care needs. These levels were intensified when the unmet palliative care needs left the nurses’ interventions prolonging the patients dying process (Wolf et al., 2019).
More than 75% of respondents in this study reported that prolonging the dying process of patients has contributed to their moral distress (Wolf et al., 2019).
The authors of this study specifically mention the immense prevalence of moral distress found throughout their study (Wolf et al., 2019). This highlights the presence of barriers to the optimal integration of palliative care within intensive care units (Wolf et al., 2019). Barriers such as these are not surprising, as many aspects of critical care seem antithetical to those of palliative care. The intensive care unit is fixated on cure and
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rescue. This targeted approach is necessary within the modern healthcare system. Critical care has saved an incredible number of lives that would otherwise have been lost.
Aggressive, invasive interventions and technology deployed as life support which act as a bridge to support physiologic function through times of crises is an appropriate, necessary and important capability of modern healthcare.
The coexistence of palliative care with intensive care is challenging. However, this does not necessarily mean that critical care should be altered, as some have proposed, in order to balance both a palliative and critically curative approach (Nelson, Cortez,
Curtis, Lustbader, Mosenthal, Mulkerin, Ray, Bassett, Boss, Brasel, Campbell,
Weissman, & Puntillo, 2011; Cook, & Rocker, 2014). The healthcare system absolutely needs a high functioning, technological environment of rescue. Perhaps inevitable death should not be a target of such an aggressive healthcare mentality, especially when these interventions would clearly be futile in nature.
There are some positives, however, that could be more clearly associated with a robust, accessible, functioning palliative care presence in the intensive care unit.
Palliative care, with its whole-patient and family-centered emphasis, recognizes and validates important, unconditional, intrinsic factors inherent to the human condition which unfortunately are grossly unrecognized and even invalidated by the normative approach of critical care. Intensive care often reduces the patient to a collection of numerical values derived from observable features of physical existence such as vital signs, lab values, and so on. These collections of numbers are malleable, and can be
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moved and influenced by more, less or different interventions or treatments. Hence, the predominant focus of care is an attempt to coerce these number sets into the confines of normative expectations. From the viewpoint of the patient who is at the end of life, this must seem an incredibly strange prioritization to endure when there is clearly no hope of restoring wellness. At the end of life, this empiric reduction of the complexity of the human condition and the intricacies of human life leaves little space for recognition of the spiritual component of the human being, let alone allowing it to be tended to or encouraged to flourish. This shift away from a spiritual view to a medicalized, technological comprehension of death, especially in specialized technological units like intensive care, has narrowed the view of being human. Patients are envisioned as material, one-dimensional and flat. Interventions, treatments, and care often reflect this perception while simultaneously working to make it manifest. The dying person becomes a disenchanted object.
On the other hand, the whole-patient approach to care, a fully human approach, recognizes aspects of the human condition that critical care is currently unable to see.
These are factors which could act to prohibit the use of aggressive, futile interventions in the face of impending death. Palliative care possesses the language to address important aspects of hope, grace, the human spirit, crises of meaning, existential distress, curiosity about transcendence and religious necessity that so often become paramount at the end of life. The broad vision of palliative care could certainly work to rehabilitate the spiritual
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deficits that are pervasive at the end of life in the United States today (Institute of
Medicine, 2015).
Palliative care also has an approach to communication that supports patients and families. This approach can be utilized to create a more comfortable or comforting environment, to clarify the goals of care, to foster whole-being approaches to healing and/or to increase end-of-life awareness (Clary, & Lawson, 2009). Clarification of the goals of care, along with an increase in the acknowledgement, identification and awareness of end-of-life care in hospitalized patients, has the potential to slow the forces that drive clinical momentum. Patients who make it clear that their goals for care do not correlate with a transfer into the intensive care unit will presumably be spared from the cascading effects of clinical momentum. Patients who have acknowledged end-of-life status, who have awareness of the realistic possibilities for effective treatment as well as the perils of excessive, invasive and aggressive interventions, will also presumably chose to forgo a “full code” response to physiologic events, thereby sparing themselves from being swept away by hospital institutional forces like clinical momentum.
There is a desperate need to replace ritualized futility at the end of life with mechanisms that are not maleficent. These mechanisms should support anticipation of and coping with death and dying. These mechanisms should facilitate one’s understanding at the end of life and sustain one’s sense of identity with all of its cultural and social significance. These are mechanisms which impart value and meaning. The thin rituals of medical technology redefine humans as homo techne, a single dimension.
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Critical rituals of death and dying recognize the greater depth of persons at a point when medical technology should stop.
Palliative care has the depth and capacity necessary to act toward a solution for the culturally and institutionally mediated healthcare failures that give rise to moral distress in nurses. Palliative care could certainly work to fix many of the aspects associated with the ritualization of futility in the intensive care unit. The presence of a robust palliative care service could possibly work with patients to exempt them from the institutional current of clinical momentum through meaningful discussion into code status and other activities of advance care planning. Certainly, a well-integrated palliative care service in the intensive care unit would work to target and reduce the ritual use of futile intervention at the end of life. This would decrease the prolonging of the dying process and the resulting liminality of death.
Many mandates of palliative care and nursing run parallel to one another. For instance, both palliative care and nursing are called to appreciate the full dimensionality of the human being seeing beyond the illusion of homo techne. Both also operate under the principle of patient beneficence. Human finitude is a part of the human condition, which means that death is not simply a meaningless exit into the void of nothingness; it is an integral part of a human transition. Instead of being viewed as a crisis, a failure, a state in need of rescue or a thing to be subject to and dominated by violent and critical intervention, death must be seen as something more.
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Following from this, it is clear that palliative care may also mitigate the high levels of moral distress that correspond with these activities as discussed above (Wolf et al., 2019). Nurses, with the help of palliative care, could make better use of their presence at the bedside. Rather than implementing aggressive technological interventions destined to be futile they can better use their proximity to the patient and their family at the end of life. Nurses can start the difficult preparatory end of life discussions that help foster a sense of anticipation related to death. Nurses can attend to the metaphysical or transcendent needs that so often arise at this time, either directly or by summoning others to the bedside. Finally, nurses can allay many of the fears and anxieties of the patient’s loved ones, shepherding them through the transition of death as well. Through these efforts the work of the critical care nurse takes on a higher meaning. They acknowledge, participate in and validate the fullness of the human condition. They fulfill needs of patients and their families which transcend the material and physiological plane. In so doing, they are also fulfilling the beneficent mandate of the nursing profession, which, after all, has to be part of why they chose this profession in the first place.
Through collaboration with palliative care and others, the profession of nursing can be integral in a partnership able to affect transformative change. These changes would be the first steps to reformulate the modern approach to death so that Americans will increasingly begin to die better, especially as death is reformulated to return to the home. These changes would also be the first steps to stopping the immense psychological distress that may come to haunt nurses from the intensive care unit should they ever
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question matters of moral culpability. If left to the author of this thesis, the movement towards this transformative change would begin in a way such as this:
Dear Jaime,
I am so sorry that as you lay dying, your death bed was not populated by your
family, your loved ones and the people with whom you shared your short life. I
am so sorry that your death bed was instead manned by strangers, strangers like
my coworkers and me. During such a potentially terrifying, or at least singularly
profound transitory life event, someone should have been comforting you, or at
least offering a human presence to journey, even if ever so slightly, alongside of
you. When I should have been holding your hand, I instead was drilling an intra-
osseous access into your bone. I am so sorry I had to do this, and it was just so
we could administer more medications that never even possessed any capacity to
salvage what was once your life. I’m sorry that our response, as intensive care
nurses, to the overhead announcement of your approaching death, those repeated
calls of “Code Blue to Medical Unit room 513”, caused such immense fear and
terror in your young daughter. If I blink in mid-memory, I can still see her
terrified eyes, garnered from a glimpse I caught of her right as she began to
crumble. I am so sorry that the trauma of losing you in this way might be one
from which she may never escape. I am sorry I did not know her name when we
came in, I am sorry I did not know your name while you lived. I am sorry that
there was no time to know anything about you outside of your hospital room
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number and your rare cancer diagnosis. I am sorry I did not know about your farm, or about your beautiful smile. I wish you had been there, on your farm, instead, Jaime. I wish you had been visited by all of the many people who love you, like your sister, your pastor, your best friend Ellen and all of the others that miss you so terribly. I wish you had been made to be quite comfortable in your bed, flanked by your husband, and your daughter, each of your tightly swollen, yellowing hands held tightly, while the night breeze ushered in the faint smell of your beloved alpacas. You would have been warm, covered, comfortable and loved. Instead, you were cold, exposed, hurt, and alone. I am so sorry that we hurt you, Jaime. I am sorry that I hurt you. I am sorry that you were utterly alone in a room full of fellow human beings. I am sorry that I let you be alone, when I was right next to you, at a time when you likely needed someone the most. Some of my coworkers are able to rationalize these kinds of events, or deaths like yours.
They see a vacated body. They say the person is no longer truly there, there is nobody left inside the body to be hurt, or to feel alone. But I looked at you, Jaime.
I saw you reach as we pulled you away from them. I saw you wince when we made you hurt, I saw you looking at me. You were there, I saw you. I can still see you. And I am so terribly sorry. I suppose the truth is, even so many years later,
Jaime, the weight from our brief encounter is immensely heavy, and it remains unchanged. Try as I may to unburden myself of it, it remains. I will carry you with me always. I want you to know how truly sorry I am. I hope that one day, for
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the pain I caused you, and a decade’s worth of similar scenarios from the intensive care unit against others like you, that I will be able to be forgiven, or perhaps that I will be able to forgive myself. Anyway, I was just thinking about you again, today. I remembered trying to get you prepared for the morgue, trying to undo the damage to you that I had helped to inflict. For some reason I wanted to let you know that I still sing to my patients. Just like I sang to you, after the calm came, even though you had already gone. I also just wanted to tell you, again, that I am sorry.
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