|Year : 2022 | Volume
| Issue : 4 | Page : 285-289
Existential suffering, futility, and the mental stress of moral distress in health care
Department of Pediatrics, Division of Hematology and Oncology, Faculty of Medicine, University of British Columbia, Vancouver; Provincial Health Services Authority, British Columbia, Canada
|Date of Submission||30-Aug-2022|
|Date of Acceptance||24-Nov-2022|
|Date of Web Publication||16-Dec-2022|
Dr. Philip Crowell
British Columbia Children's Hospital, Office 2C19, 4500 Oak St. Vancouver, British Columbia, V6H 3N1
Source of Support: None, Conflict of Interest: None
This article explores the relationship of existential suffering and moral distress by examining life-threatening medical situations and the distress on persons engaged in medical ethics decision-making. The aim and focus are to articulate how existential suffering experienced by the patient and family generates moral distress in the health-care team as they perceive ongoing treatments as futile. Suffering and existential suffering pose a challenge ethically and therapeutically on a number of levels, first in terms of determining what a patient wants to be addressed or what a substitute decision-maker needs to consider in fulfilling the best interests of the patient who is suffering. Second, when there are unrelenting and intolerable sufferings, a difficult medical assessment is sometimes made that any further treatments are “futile,” which leads to conflict with the family and moral distress for the medical team. Moral distress and mental stress have physiological, psychological, social/behavioral, and existential-spiritual dimensions. Existential suffering consists of a constellation of factors, not only severe pain but also the inclusion of harms from the illness, which are irreversible, irremediable, and unrelenting, adding to the total suffering. This article argues that the existential suffering of the patient and family has a special moral status that significantly and legitimately guides decisions at the end of life, and addressing the existential suffering of the patient/family can relieve levels of moral distress for the health-care team.
Keywords: Existential suffering, futility, mental stress, moral distress
|How to cite this article:|
Crowell P. Existential suffering, futility, and the mental stress of moral distress in health care. Heart Mind 2022;6:285-9
| Introduction|| |
The goal of this article is to clarify the nature of existential suffering and moral distress in the context of life-threatening illnesses and to demonstrate their impacts on medical and ethical decision-making. The specific focus is to delineate how the existential suffering of the patient and family experienced as an existential crisis can lead to moral distress of the health-care team. Understanding existential suffering and addressing it first with the patient/family and then with the care team can mollify the potential for moral distress of the team. The concept of moral distress has been refined over time, known as the Moral Distress Scale-Revised. The literature has indicated that moral distress can be addressed by health-care professionals demonstrating moral resiliency. However, the literature very rarely, if ever, makes explicit the connection between existential suffering and moral distress. The literature focuses on health-care teams attending to their “well-being” in order to address moral distress without going “upstream” to the existential distress of patients/families. This article affirms that with explicit attention to the spiritual distress that starts with the patient and their family members, that there is an opportunity to ameliorate moral distress.
Existential suffering need not be conceived as esoteric suffering. Instead, existential suffering is explicitly human suffering in its totality. We are not speaking of existential suffering articulated by the philosophy existentialism depicting the human condition but rather the suffering when faced with a health crisis as well defined by palliative care specialists. The complexity of a patient's suffering in the adult, and pediatric context often generates moral distress as medical teams and families witness the suffering of others. The teams feel extremely limited or constrained in their ability to respond in the light of their values, or feel codes of ethics and sense that the treatments delivered are futile in nature and even detrimental to the patient. The frustration for health-care professionals dealing with this sense of futility can cause conflict and stress with the patient, families, and substitute decision-makers (SDMs). The existential suffering of patients and their families is often heightened because of the destructive and corrosive elements of severe illness affecting the patient's independence, freedom to act, and connection to their world. This article will set out a general depiction of existential suffering and a definition of moral distress, which is often derived from a perception that treatments and care plans in specific situations are futile or designed to avoid litigation. The unique dimension of this review is depicting and underscoring the relationship between existential suffering and moral distress in the clinical setting.
| Moral Distress|| |
Health-care providers who sense they have been compromised in terms of proper care of their patients can identify both internal and external constraints. Moral distress occurs when one knows the right thing to do but feels unable to do so. For example, the bedside nurse is feeling that the patient is being harmed by the constraints of medical decisions or by the decisions of the SDM or parents. The nurse is feeling forced to continue a treatment she or he believes is detrimental, harmful, futile, and injurious. Critical care providers having to deal with moral distress and difficult cases on a regular basis reveal high levels of burnout.
The classic moral distress situation occurs when the patient is perceived by the care providers as enduring prolonged intolerable suffering without any reasonable chance of recovery from an irreversible condition. The distress arises when the patient or SDMs request more treatments with next to no chance of benefit. The perception of the medical teams is that continuing to treat is morally unacceptable because it is causing pointless suffering either indirectly because of the side effects of the treatment or directly by prolonging the suffering of illness and what is perceived as relatively imminent death.
Notably, the definition of moral distress is an evolving one and where the discussion is very much alive and vibrant. It is suggested, for example, that moral distress can essentially arise when a person perceives oneself to be involved in a “morally undesirable situation” and equates that experience with feelings of unease, regret, bad, and frustration. By and large, most definitions have tended to maintain the core elements of the original definition, that one is compelled to act in a way that one believes is morally wrong but feels powerless to effect change.
| Moral Distress Symptoms|| |
The moral distress of care providers may be heightened to unbearable limits as they continue to perceive the suffering of their patients and the unwillingness of SDM to transition to palliative or compassionate care. The research literature on moral distress indicates that there are four types of stress and distress experienced by health-care providers experiencing moral distress. First, there is physical stress and symptoms of distress such as fatigue, lethargy, weight gain, weight loss, headaches, glycemic index issues, and impaired sleep. The second form of stress arising from moral distress is mental and emotional distress, resulting in impaired mental processes such as forgetfulness, anger, fear, guilt, resentment, sorrow, depression, sleeplessness, frustration, cynical attitude, anxiety, sarcastic responses, emotional outbursts, emotional shutdown, and feeling overwhelmed. The third form of stress and distress is behaviors leading to addictive behavior, alcohol, drugs, gambling, controlling behaviors, inflexibility, rigidity, offender behavior, boundary violations, over-involvement with patients, apathy, shaming others, and treating patients as nonpersons. The fourth form is existential/spiritual distress experienced as a loss of meaning, crisis of trust/faith, loss of self-identity, self-worth, and most profoundly, that “life is falling apart at every level.” This existential distress is different from what patients and families experience since it is usually the result of cumulative experiences of moral distress not having been resolved.
An antecedent cause of moral distress in life-threatening or end-of-life situations is often an independent event occurring with the patient and families who are experiencing an existential crisis and suffering the loss of a family member. The article argues that separating the health-care team's moral distress from the family's experience in crisis may minimize the fact that both moral distress and existential distress often do have a significant connection. It is appropriate to examine the specifics of existential suffering and circle back to an inquiry into the relationship and connection to the experience of moral distress through the lens of futility discourse. Recognizing existential suffering can lead to some significant resolution and diminishment of the distress.
| Existential Suffering/Distress|| |
Patients and families in medical crisis experience existential suffering. Likewise, children in horrible medical situations experience existential suffering, as do the parents. Neonates experience suffering too, but it is sometimes argued that their very limited cognitive function may not experience existential suffering. The experience of existential suffering occurs in various forms at different stages in life situations, such as facing a life-and-death scenario, receiving health-related bad news, dealing with an end-of-life decision, experiencing prolonged existential frustration because of a loss of purpose, or being overwhelmed by a mental health crisis. The current debate and discussion about the term existential and spiritual suffering, especially in the palliative care world, reflects a breadth of understanding in which existential suffering and spiritual suffering are very similar. The integrated literature review of Boston et al. discussed existential suffering in the palliative care realm and underscored how this term existential suffering/distress has come to full fruition in terms of identifying the loss of connection and purpose in life, a total fragmenting of life because of severe illness. In their review, Boston et al. identified 56 definitions of the term existential suffering. They recognized that there are consistent and dominant themes that are identified as being essential to most definitions. There are the following thematic experiences held in common: lack of meaning or purpose, loss of connectedness to others, self, nature, the sacred, a sense of desolation, fragmentation, and loss of hope.
| The Nature of Suffering|| |
With this backdrop of existential suffering, it is important to consider the foundational work of Dr. Eric Cassell. His seminal writings are important to consider in that he defined the challenges and the problems looming large in the medical world decades ago. Technology sought very precise answers to the concerns of patient's suffering in terms of diagnosis, prognosis, and treatment. Dr. Cassell is credited for focusing the medical world on the nature of suffering in his seminal work The Nature of Suffering and Goals of Medicine. Cassell's definition of suffering in 2004 was “state of severe distress associated with events that threaten the intactness of the person,” and it further clarifies the contemporary definitions of existential suffering. Cassell begins his discussion with an acknowledgment that pain and suffering are often coupled together as the same. Physicians minimizing the nonphysical aspects often ignore suffering in their quest to address the cause of pain. Cassell points out that it has become generally accepted that pain and suffering are not synonymous, even though physical pain is a major source of human suffering. However, Cassell affirms that pain is only one among many sources of suffering. It is also acknowledged from the patient's experiences and the vast literature on this topic that patients often suffer from their treatment, the way they are treated, known as iatrogenic suffering, as well as from their disease. Medicine's singular focus on the body is well known, as well as the dichotomy in medical history and theory in terms of the mind-body divide. The move today against the separation is growing, but reductionism in thought and practice is not without its successes. However, the over-medicalization of human experience, often driven by new technologies, avoids the complexity of interconnected biological systems, especially evident in neurophysiology and human consciousness.
Cassell's rejection of dualism leads to a focus on the person who is not merely body, spirit, or mind but rather a multiplicity of interconnected facets. This recognition becomes a first step toward addressing human suffering. Cassell's basic definition of suffering is broadened by the observation of the threat of disintegration or lack of intactness of the patient is more than shortness of breath or acute pain. It is rather the severe distress that he identifies as suffering in broad terms, and we are identifying as existential suffering. Cassell understands suffering as an experience that threatens the “intactness” and the connectedness of the person. The internal and external “intactness” to oneself, sense of identity and the intactness to meaningful relationships are a constellation of features significantly threatened in the experience of existential suffering.
Cassell's description of suffering further enhances the conception of existential suffering as a whole person suffering. The discussion of end-of-life care shifts the focus away from relying exclusively on expert opinions about the likely outcome, other treatment options, or even lack of options. Instead, it brings the focus back to the patient and family and what the family/patient perceives as having value, and how they understand the patient's suffering in this specific life-threatening situation.
Recent articles on pediatric medical ethics by Erica Salter suggest, in a pejorative manner, that suffering is the “new” futility argument which entails a number of issues and a prime factor in ethical decisions to withdraw treatments that are ineffective in dealing with the underlying problems. Salter argues that patient suffering has “no special moral significance, over and above that of other harms and benefits.” We would disagree at this point, especially if we understand suffering as existential suffering, which starts with the patient and radiates to the family. Our argument is that suffering, in its various dimensions, is paramount and gains in importance as it is prolonged, irremediable, and grievous. Suffering has moral status in the aforementioned ways, albeit not exclusively. When the patient and family resist the life-threatening reality and see medical interventions as anything but futile, it is called existential suffering. Futility is different, and such claims are absolutely weak in claiming that there is “no use” or “no utility” in a treatment. In order to understand the connection between futility and suffering, it is important to clarify the various meanings and usages of the concept of futility.
| Perspectives on Futility|| |
Futility generally refers to the relationship between an action, its desired goal, and the probability of success. “When physicians conclude (either through personal experience, experiences shared with colleagues, or consideration of published empiric data) that in the last 100 cases, a medical treatment has been useless, they should regard that treatment as futile. If a treatment merely preserves permanent unconsciousness or cannot end dependence on intensive medical care, the treatment should be considered futile.” The unacceptably low likelihood of achieving a result that the patient would appreciate as a benefit is another definition and feature of the notion of futility. There are different types of futility. Physiological futility is when the proposed intervention cannot achieve the desired physiological result. The other form of futility is qualitative futility, defined as when the proposed intervention is unlikely (vs. impossible) to achieve a therapeutic objective. In this situation, there will be a quality of benefit produced which is exceedingly poor. Physiological futility often looks like quantitative futility in terms of specifying numerical odds, for example, the statistical probability of the remission of cancer.
However, a treatment that is very unlikely to achieve its therapeutic objective may have other benefits allowing family or patient to achieve a goal that is important to them, such as buying time to find some closure, allowing them to process the weight of the situation, to bring the family together, having spiritual or religious ceremonies, and other psychological benefits. Futility need not be the premier route guiding such ethical decisions, rather, what is important is assessing the complexity of suffering in both its prolonged and unending state and its wider implications. In order to understand further how the term futility is used, the following case is instructive.
| A Case and Measure of Futility|| |
This tragic composite/hypothetical scenario involves a 15-year-old girl in the pediatric intensive care unit (ICU) on life support. Her higher cortical function is severely diminished due to extensive brain bleeding. However, her brain stem supports breathing while aided by a ventilator. Weeks have passed, and the parents continue to demand ICU support, even after they have been clearly informed that the severe brain bleed has devastated her brain. The brain stem is marginally intact and sufficient to pass breathing apnea testing procedures. The ICU interventions and support are being discussed by the medical teams as futile since the girl's situation is irreversible. However, the parents believe that medications, breathing support, and all the ICU regiments are not futile because they are sustaining the survive-ability of the patient and giving them time together. Patient and family are collectively experiencing existential suffering as they deal with the medical assessment that there is nothing more to be done that can change the outcome. Their sufferings are so acute that the parents demand continuing interventions, and these demands by the parents generate moral distress for the health-care team.
| Discussion|| |
The health-care team, as they witness suffering, feel powerless and ask, “why make a patient endure such suffering if there is no reasonable hope of improvement?” When the neurological imagery indicates vast neurological injury, whatever the underlying cause, this speaks to the issue of the “intactness” of the patient in a holistic sense. Neurological devastation is critically important to the experience of the doctors in their assessment and prognosis. The futility argument is countered by an SDM's uncertainty claim that we cannot know exactly if there won't be an improvement. Because of the interpreted suffering and neurological devastation by the medical team, the idea of futility should be shifted to an argument about suffering that is intolerable, grievous, and most importantly, irremediable. At this point, the claim is that this suffering is not in the best interest of the patient, and it serves no purpose to prolong the suffering since recovery is not possible.
The best interest claims in these situations are not central because there is no “best.” Therefore, the arguments often transition into “harm arguments,” suggesting that prolong pointless suffering is harming the patient. Therefore, treatments must be effective; if not so, then the burdens and suffering to the patient outweigh any minimal potential benefit to the patient. An intervention that will extend the life of a patient with only extremely limited neurological activity is seen as futile. This is the acute point of moral distress for the acute care team, as John Lantos has pointed out that futility arguments by the medical team are most often disguised as quality-of-life assessments. In this situation, the suffering as “lack of intactness” is unrelenting and such suffering has no quality of life. Even though suffering is a subjective and intersubjective assessment and cannot be judged without the possibility of some margin of error, as with many types of judgments, it can be based on sound reasoning and ethical criteria that recognizes the linkage between injury, pain, suffering, and existential suffering. This suffering has special moral status in that it can guide ethical decision-making as suffering is monitored and measured by palliative care physicians. If prolonged unrelenting suffering is likely to continue and if it serves no purpose, then the argument is not contingent on logistical or technical criteria or rationing of resources argument but on the assessment by the medical team and the family that irremediable suffering and existential suffering is happening. The medical team needs to guide the family as decision makers to an understanding that the patient's condition is irremediable, and further interventions are even harmful in many ways. Perspectives on these value judgments matter, especially as they are connected to respecting the quality of life defined in terms of the severe degree of total, unending and existential suffering of patient and family. Hardwig indicated years ago that family demands for “futile” treatments are not a medical crisis but rather an existential and spiritual crisis when there is an imminent death of a family member. Addressing and acknowledging existential suffering with psychological and spiritual support is the first step. Then it should be transitioned to comfort measures for the patient. Validating the family's vicarious existential suffering can be a key way to diminish the central concerns of moral distress. The primary limitation of this article is that it has a very narrow contextual focus on specific Intensive Care scenarios. As cited in the Introduction, current moral distress discussions are often dominated, and defined by the COVID-19 pandemic and various restrictions implemented. However, there are other dynamics generating different types of restrictions and constraints for the health-care teams, namely, the separation of patients from their families in end-of-life care. Likewise, the implementation of a utilitarian approach to health care also limits individual options in the attempt to manage resources so as to save lives. Another limitation is the need to discuss advanced directives. This article has given thorough consideration to the dynamics of shared decision-making of the patient, family, and health-care team, but the advanced directives guiding the process, particularly for the adult population, still needs detailed consideration.
| Summary|| |
The nature of existential suffering is a complicated mix of physical, psychological, cultural, and existential-spiritual factors. When the suffering of patients cannot find amelioration and mitigation, such barriers often lead to moral distress and a sense of futility that focuses on the harmfulness of the treatment. The impending sense of loss, disconnection, and fragmentation in existential suffering differ from moral distress since the latter is about the moral feeling compromised by a treatment plan or system. The existential suffering and stress of the stakeholders are more ubiquitous, amorphous, and hence insidious if not addressed. Highlighting the significant difference between moral and existential distress and then contextualizing the relationship between these milestone experiences to each other underscores the various challenges and the need for more research and analysis of this relationship. Moving toward an understanding of existential suffering to address these experiences of distress is an important step. It can never be a completed task, but there are paths to some solace, resiliency, and meaningful connection in identifying suffering as having moral significance and recognizing the various forms of distress and the affirmation to alleviate suffering in all forms.
The ethical statement is not applicable for this article.
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Conflicts of interest
There are no conflicts of interest.
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