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  • The Clinical Bioethicist’s Role: Should We Aim to Relieve Suffering?
Abstract

Bioethics consultants arrive at their profession from a variety of prior experiences (e.g., as physicians, nurses, or social workers), yet all clarify ethical issues in the care of patients. The integrated bioethicist’s role often extends beyond case consultations. This case presents a young person suffering a prolonged and gruesome end–of–life journey, which raised questions regarding the bioethicist’s role in alleviating suffering as part of the health care team. The case is used to illuminate forms of suffering experienced by patients, families, and health care providers. The question arises as to whether it is in the ethicist’s jurisdiction to alleviate suffering, and if the answer is “yes,” then whose suffering should be addressed? The discussion addresses one approach taken by an integrated bioethicist toward promoting delivery of ethical and compassionate care to the patient.

Keywords

Clinical Ethics Consultation, Healing, Meaning in Death, Provider Well–Being, Suffering

Introduction: How Do We Define Suffering?

According to Eric Cassell, suffering can be defined as “a specific state of severe distress induced by the loss of integrity, intactness, cohesiveness, or wholeness of the person, or by a threat that the person believes will result in the dissolution of his or her integrity” (Coulehan, 2012, p. 717). Jack Coulehan concludes that suffering “results from the stripping away of beliefs and symbols by which we construct a meaningful narrative of human life in general and our own lives in particular” (2012, p. 728).

The Clinical Bioethics Consultation

At first, it seemed to be a routine clinical consultation. A nurse at the hospital where I serve as Bioethics director asked me to evaluate decisions [End Page 223] being made for her obtunded patient, Jane.1 The physicians were proceeding with aggressive care, yet this nurse had overheard the patient’s sister and surrogate decision–maker state that Jane would NOT have wanted this procedure, and was now afraid that she would wake up from surgery angry. The nurse queried whether the medical team and the surrogate decision–maker might have violated the patient’s true wishes.

Patient Jane had just undergone a total colectomy (removal of her colon) the night before I was consulted. The question now was whether to continue aggressive care or switch to comfort care in order to honor Jane’s goals. Jane’s sister, Maria, was her closest family member and therefore the logical decision–maker. Maria was scared and asked whether the treatment had “gone too far.” To complicate matters further, Jane’s estranged Uncle James had just arrived at the hospital, insisting that “you must do everything.” The ethical questions were clear: What level of treatment matched Jane’s values, and which family member could most accurately represent her wishes?

The emotions of the medical team were running particularly high because Jane was only 32 years old. She had suffered from autoimmune arthritis when younger; hence she was experienced in making medical choices. After many courses of immune suppressants and hospitalizations in her teens and early twenties, Jane’s arthritis improved, allowing her several hospital–free years. During this time, she was said to be a “free spirit,” occasionally abusing drugs and alcohol. Recently, however, Jane had started to turn her life around and was actively pursuing her dream career as a fashion designer. She had talent and had begun working her way into the competitive fashion industry. But two years prior to this admission, Jane began having diarrhea and eventually was diagnosed with another autoimmune disease. This time, her immune system attacked her small intestine rather than her joints. She had autoimmune enteritis, for which there is no cure; rather, one hopes for remissions induced by immune suppressants. When Jane’s enteritis flared up, she could not absorb nutrients and became malnourished.

Jane had undergone increasing hospitalizations for dehydration and electrolyte abnormalities during the preceding year. She did not always follow physicians’ instructions, including the instruction to have an indwelling catheter removed, given two weeks prior to this admission. Instead, she had arrived at our emergency room 10 days later, febrile and septic. Jane was admitted to the ICU and treated aggressively for sepsis with broad–spectrum antibiotics and with vasopressors to raise her plummeting blood pressure. The combination of poor nutrition and low blood pressure compromised her extremities, with her swollen hands and feet sloughing off skin. Jane’s sepsis was reversed, but she suffered a setback when copious diarrhea from a Clostridium difficile2 infection could not be controlled. Despite aggressive rehydration, her continued fluid loss exacerbated the hypotension. The medical team decided that the only way to stop the fluid loss was to perform a total colectomy—in other words, to remove her entire colon.

The day Bioethics was consulted, the colectomy had already been performed, and now some physicians and nurses were unsure about the best options going forward. The ICU attending physician, Dr. Barbara Spade (name changed to protect privacy), confirmed that she would appreciate help from Bioethics. Dr. Spade knew that although Jane’s immediate fluid losses had been ameliorated, her underlying autoimmune disorder remained out of control and her small intestine could not absorb the nutrients she needed in order to heal. Dr. Spade was unwilling to abandon hope yet. Because the patient was young, she wanted to offer her every chance that medicine could muster. A Bioethics [End Page 224] consultation might clarify Jane’s choices and help to transfer some of the weight of decision–making away from Dr. Spade and her quiet, but worrisome, doubts.

Overall goals of care were complicated. The hypotension after sepsis and before her colectomy had induced tissue loss and gangrene in Jane’s distal extremities. Because her career was drawing, designing, and sewing clothes, her hands were instruments vital to her work. Jane wanted a future, but her chances were looking severely compromised; even if she pulled through this hospitalization, she would lose several of her fingers and toes.

Jane had had a difficult childhood. She and Maria were only 4 and 8 years old, respectively, when their parents died in a car accident, and the two girls were raised by their Uncle James and his wife, Cathy. Catholicism was important to Jane’s family; she grew up attending Catholic school, though she stopped practicing her faith in her late teens and early twenties. But when the economy got bad, James lost his job and started drinking. Jane and Maria lost contact with James after his drinking worsened, and he moved two states away in pursuit of work. Although Jane had not spoken to her uncle in two years, when Maria called James to tell him how sick she was, he came to the hospital immediately. I spoke to James and Cathy in the ICU while waiting for Maria to arrive.

I had briefly introduced myself to Maria by phone. She was coming to the hospital within the next hour, so we agreed to speak further when she arrived. James was eager to find out more about Jane’s condition in a family meeting. I spoke to the medical team providing her care, who showed sympathy for the predicament they were witnessing; Jane was growing weaker, yet Maria was holding onto hope. The team members, deeply saddened by their own sense of helplessness, evinced their gut–level empathy with Jane. Many of the nurses were close to her age, while many doctors were also young, and others had children close to Jane’s age. They all winced at the thought of hearing that their own lives, or the lives of their offspring, were being cut short.

Maria arrived and went directly to see Jane in her room. She stated that she did not want “to talk to Bioethics now,” which I respected. I returned to the ICU later and was informed that Maria and James had reached consensus; they both agreed with the medical team to continue aggressive treatment until Jane woke up and could convey her own wishes. With everyone on the same page, it appeared that the role of Bioethics in this case was over. I wrote my chart note agreeing that Maria was the appropriate surrogate decision–maker, and that full treatment at this time was within ethical norms of care; however, if Jane truly wanted less aggressive treatment when she awoke, it would be important to honor her wishes and to limit treatment accordingly.

The Case Endures

It appeared, then, that my role in Jane’s case was finished—or was it? Jane regained decision–making capacity after her colectomy. She was not mad at Maria for keeping her alive. Her fluid losses from C. diff were resolved, yet the malnutrition caused by her underlying autoimmune disease continued to threaten her digits and her life. Jane was tired of all the tubes and invasive treatments, yet she chose to pursue all available aggressive treatments except cardiac resuscitation; she wanted the health care staff to forgo CPR should her heart stop. The physicians changed her code status to DNR (do not resuscitate), and continued other treatments.

Jane’s mood was variable, at times distant, demanding, or tearful. The medical team controlled her physical pain so that she could focus on her family, resting, and communicating her wishes. Jane continued to tell various members of the medical team that she did not really want to undergo further aggressive treatments, yet each time she was offered an aggressive debridement, or a digit amputation, she would sign an informed consent willingly. Maria, James, and Cathy encouraged Jane to keep trying, to allow her small intestine one more chance, then another, and then yet another, to start absorbing nutrients. Jane did not like seeing her family suffer and although she was tired, she continued to accept treatments. In my medical and bioethics experience, [End Page 225] it is common to see very sick patients endure invasive and prolonged treatments in order to support loved ones who are not ready to say “goodbye.” Witnessing emotional pain and suffering in a loved one can be more difficult than experiencing one’s own physical anguish.

Ethically, I wanted to be sure that Jane did not feel coerced by her family or by the medical professionals. I queried her doctors, nurses, social workers, and clergy regarding undue pressure on Jane to continue aggressive procedures, and they replied unanimously that she was freely and knowingly consenting.3 Jane was not being coerced, and some physicians still concurred with giving her a long–shot hope that her enteritis might move into remission. Despite their words of reassurance, however, the body language of many providers revealed anguish through furrowed brows and indirect glances. Whereas Jane and her family seemed to be coping with their choices, as a bioethicist I was concerned that these aggressive treatments were causing more distress for the medical team.

The medical team knew that the best available treatments had failed to reverse Jane’s autoimmune enteritis and they felt helpless. Keeping Jane alive meant removing more parts of her body, and therefore life–prolonging interventions seemed not only futile because they could not cure her underlying condition, but gruesome as well. The medical staff took Jane to the operating room nearly 20 times to debride soft–tissue wounds and amputate digits. As Jane’s body continued to reject repeated attempts to absorb enteral feedings, I watched the medical team became sadder and more frustrated with each intervention.

As the helplessness increased, many grappled with the limits of modern medicine. Some providers wanted to hold onto a glimmer of hope alongside Jane and her family, while others were sure of the grim odds against success and feared that we were prolonging Jane’s suffering. These providers became frustrated and at times transferred their own angst onto others, decrying the family’s persistent need to hope as well as their own colleagues’ unrealistic need to support the nonstatistical possibility of a “miracle.” As a bioethicist, I wondered how I might help the providers to navigate their moral distress, while supporting Jane in her decision to carry on for her family.

Jane never left the hospital. She remained two months after being admitted for her sepsis, requiring intensive treatment right up until her last week. As it became clear that Jane’s gut would not heal and that she would die, the providers who wished they could save Jane took some solace in knowing that she wanted to keep trying, confirming their belief that their efforts had been worthwhile. They justified using resources because they were alleviating suffering. I spent hours clarifying goals during the months Jane continued treatment. These conversations reframed treatments goals from alleviating Jane’s physical suffering, and possibly inducing remission, to respecting her wishes for time to heal layers of psychological, social, and spiritual suffering (Schroepfer, 2007).

As Jane’s physical state continued to decline, our palliative care team became more involved in her care. The palliative team attended to alleviating Jane and her family’s emotional strain, meeting their spiritual needs, and relieving Jane’s physical pain. The chaplain and the social worker shared with me that Jane felt bad about the worry she had caused her loved ones during her rebellious youth. In order to make up for her earlier actions, she wanted to do something to help now. By enduring treatments, Jane was bringing some healing to a family that had been broken and scattered. Cathy, James, and Maria were together now, allowing time for healing old wounds. Jane was on an existential journey to give meaning to the time she had left. Although her time on earth was cut short, she could help to bring some order to her family and express her gratitude to them. [End Page 226]

Relief of Patient Suffering

My first profession and training was as a family physician. I spent 30 years taking care of patients and still see myself as a healer. Thomas Egnew says that “Healing is the personal experience of the transcendence of suffering” (2005, p. 257). In Jane’s case, I felt compelled to understand the choices that she had made by asking myself what had caused her suffering. I observed three layers of suffering in Jane’s case: “physical” suffering, “relational” suffering (referred to in the literature as both “social” and “psychological” suffering), and “existential” suffering (akin to “spiritual” suffering, but more closely attuned to achieving meaning and purpose in life). I wanted to understand how Jane was trying to transcend her suffering.

The clinical staff worked diligently to relieve Jane’s physical suffering. When intense physical pain is present, it is nearly impossible to attend to other layers of suffering. The medical team did a wonderful job of attending to Jane’s physical suffering. Jane had several relationships that were frayed and in need of mending. Psychological and social suffering often overlap, so I combined these two together as relational suffering. Unless one has a primary mental illness, there is a strong interdependency between psychological well–being and social relationships. Jane’s family was fraught with relations in need of mending. Jane’s wildness in her youth had created her feelings of guilt. James’s drinking and distancing himself had left the girls with scars. Maria was so close to Jane that she could not imagine life without her. Jane’s choice of aggressive treatment gave the family time to attend to their wounds. Allowing time for her family gave Jane a sense of purpose in her remaining short life, which addressed her existential suffering. Jane told the chaplain that she wanted to help her family to come together. The chaplain and the social workers shared that in the days before Jane died, both she and Maria had achieved a state of acceptance and peace.

My role in our hospital is to integrate bioethics into daily patient care. I round several days a week with the ICU teams, and chat frequently with nurses, social workers, and the chaplain in the hospital hallways. I have good relationships with many providers, and regularly ask if any cases are worrisome from an ethics standpoint. Jane’s case would come up time and time again, yet all agreed that the family did not need another provider asking the same questions. Our palliative care team was attending to the family. Yet there was doubt as to whether or not we were “doing the right thing.” Clinicians wondered out loud, “Are our treatments helping?” “Why does she state she does not want treatments, yet consent repeatedly anyway?” “These treatments are Band–Aids, so why do we keep offering them?” I listened to the health care providers’ frustration, their sadness, and ultimately their acceptance that they were assisting Jane in finding meaning before she died. In order to find language to help the providers, I had to understand fully the layers of Jane’s suffering. As a family physician, my training was inadequate, so I explored the following question: What role do clinicians have in relieving the many layers of suffering?

Eric Cassell, a physician well known for his work on suffering in patients, explains that “there can be no understanding of human illness or suffering without taking [personal meaning] into account” (1982, p. 641). Mount and colleagues expand this explanation further, saying that “meaning was not an end in itself, but a by–product of a related experience, a sense of connectedness. It was not meaning, per se, that brought the person alive but the underlying experience of being part of something greater and more enduring than the self” (Mount, Boston, & Cohen, 2007, p. 383). I could now explain Jane’s choices to endure aggressive treatment through the meaning derived from connections within her family. Mount et al. (2007) share Victor Frankl’s insight that some people (though not all) may even finding meaning in the actual suffering itself. Egnew further explicates that “suffering is transcended . . . [with] a new sense of personal wholeness. Wholeness of personhood is facilitated through personal relationships that are marked by continuity” (2005, p. 258). Patients still want to feel whole even in the face of physical dissolution, which frequently occurs as death approaches. I was impressed by Jane being [End Page 227] so young yet so determined to find meaning and to feel whole. It was initially hard for me, and for others, to conceive that suffering itself could be one’s roadmap to achieving meaning, but when suffering is connected to becoming whole through relationships, many of the struggles that we witness at the end of life make sense. Jane’s path, which included physical dismemberment, paradoxically allowed her to become whole in relationships with her loved ones. Jane also appeared to be seeking forgiveness for her youthful choices, thereby seeking a type of spiritual redemption grounded in her Catholic upbringing. This observation was verified through conversations with our chaplain.

Health Care Providers’ Suffering

Clinicians are rarely trained to recognize a patient’s existential suffering, yet the suffering of patients can have a profound impact on the choices they make and hence on providers. Råholm and Lindholm (1999) studied patients with severe heart disease, and found that their “experiences were highly existential and were marked by uncertainty and fear” (p. 532). In spite of the inevitability of death, patients continued to “endeavor to find something meaningful. . . . By engaging in a personal struggle with suffering, the informants tried to create a pattern in their everyday life” (p. 536). According to Råholm and Lindholm, these patients persevered in their suffering in order to see beyond the present moment. When providers encounter these manifestations of patient suffering, they can experience profound moral distress. I surmised that the moral distress I witnessed in many clinicians originated in their lack of understanding of or inability to recognize Jane’s existential suffering. Many clinicians were unaware of their own distress; some even transferred their angst unknowingly onto family or colleagues, criticizing them for being so “unrealistic.” With health care providers who allowed the conversation, I began to explore their understanding of existential suffering in patients, as well as gently exploring whether or not their own distress stemmed from their feelings that they were causing harm.

Physicians and nurses are most comfortable with relieving physical suffering. Relational suffering is turned over to psychiatrists, psychologists, and social workers; spiritual and existential suffering are relinquished to clergy and palliative care specialists. Until recently there was little or no training for physicians in understanding “existential” and/or “spiritual” suffering. George Washington University offered the first medical elective in spirituality and health in 1992. In the past 20 years, only a handful of medical schools have incorporated spirituality and health into required curricula (Puchalski, Blatt, Kogan, & Butler, 2014). Dr. Christine Puchalski, a strong advocate for training physicians in the association between spiritual beliefs and health, reflects that it was “a regrettable consequence of this (predominant) scientific grounding that . . . resulted in the downplaying of the humanistic and spiritual elements of patient care” (Puchalski et al., 2014, p 10). Luckily, times are changing. As of 2011, 75% of medical schools integrated spirituality–related topics into their curricula, and as of January 2014, the Medical School Objective Project published competencies in spirituality and health for the first time (Puchalski et al., 2014). Unfortunately, most practicing clinicians today have little or no training in understanding, recognizing, evaluating, or alleviating spiritual or existential suffering. These layers of suffering therefore frequently go unnoticed and unaddressed by health care professionals (LeMay & Wilson, 2008).

My question was whether, as an integrated bioethicist, my role was to address providers’ moral distress. Moral distress is described as the “painful psychological disequilibrium resulting from recognizing ethically appropriate actions, yet not taking these actions because of obstacles” (Rice, Rady, Hamrick, Verheijde, &Pendergast, 2008, pp. 360–361). With each trip Jane took to the OR, I saw strain and consternation on the faces of several clinicians. The question for the clinicians was clear: Were their treatments inducing more suffering? Jane’s case added strain due to the number of invasive treatments and the recognition that these efforts might not restore her to health. The clinicians who believed that continuing aggressive treatment [End Page 228] invoked further suffering experienced the greatest moral distress, and their words and body language showed frustration and exhaustion. It is known that when moral distress is not addressed, there is increasing provider compassion fatigue, burnout, and job turnover (Schwartz Center for Compassionate Care—White Paper, 2015, March; Ulrich, Hamric, & Grady, 2010). As an integrated bioethicist, I am therefore obliged to address providers’ moral distress. In Jane’s case, I spent hours in conversation with physicians and nurses as well as with social workers and our chaplain, exploring the sources of their moral distress. They were distressed by Jane’s choices; understanding those choices as a means of helping her to manage her suffering might have helped to relieve or to avoid that distress. Could I help them to find a sense of professional peace by reframing Jane’s treatment choices as alleviating her relational and existential suffering?

Jane’s incurable disease process, and her young age, made clinicians feel vulnerable. Health care providers’ emotions and needs are important to patient care, yet are rarely addressed formally. According to Julia Connelly (2009),

Healthcare providers often suffer while working with suffering patients . . . Providers who feel vulnerable react emotionally. Common responses . . . include a sense of failure and frustration when the patient’s illness progresses . . . [certain] clinical situations may result in increased suffering, such as a fatal illness in a young person.

(pp. 383–385).

As I explored further, I realized that, like Jane herself, her providers were experiencing several layers of suffering. Physicians and nurses often suffer physically through working long hours, forgoing sleep, and forgetting to eat. Bedside providers also experience physical strain from inserting tubes, performing surgeries and repeated debridements, and turning or bathing patients who need total body care.

The clinicians and staff recognized that Jane and her family were on a different journey from one toward cure or remission. During her long stay, many of them formed relationships with Jane and her relatives, and therefore experienced loss as she continued to decline. Essentially, providers experienced relational suffering, feeling sad and helpless when repeatedly delivering bad news to the patient and her family. Common reactions when providers share bad news or face helplessness are either to avoid patients or to over–identify with them (Connelly, 2009), and neither approach is healthy for the provider. Providers also had relational losses when Jane’s care would change hands due to rotations of attendings and transfers between different clinical services. Clinicians who felt close to her and to her family had to let go with each transfer. In addition, some providers felt emotionally polarized toward either Jane or her family, depending on their opinions about the best way to advocate for her. Health care providers frequently are caught in the middle of dysfunctional families, whose contentious members may demand that sympathetic providers side with them regarding their goals of care. In a case that endures over time, relationships within the team can become strained when some providers more vociferously argue for one treatment path over another. This strain is further exacerbated and complicated by hierarchical power differentials within the health care team (Oberle & Hughes, 2000).

Some providers faced existential suffering in the context of professional meaning. Most clinicians derive meaning by abiding to “do good” and to “avoid harm.” As Jane chose aggressive treatments, I saw clinicians grapple with their professional integrity. I worked to create moral space in which to allow reflection and discussion regarding these important questions (Walker, 1993). Giving providers the opportunity to openly discuss their sense of purpose and meaning may help to diminish moral distress and the subsequent demoralization experienced when this suffering is not acknowledged and attended to (Gable, 2013). By reframing Jane’s care goals, providers were able to see her and her family’s decisions in a different light. Doctors, nurses, and social workers who expanded their vision of “doing good” to include healing for Jane’s family seemed more at ease. Ultimately, providers spoke nobly of Jane’s courage and her efforts to endure two months of invasive treatment. [End Page 229]

The Clinical Bioethicist’s Role in the Relief of Suffering

Jack Coulehan reminds us that “Compassion means to suffer with”: compassionate healers will endure suffering alongside their patients (2012, p. 726). Just as the clinicians were feeling pain alongside Jane and her family, I was feeling pain alongside the providers. Victor Frankl observed that “suffering ceases to be suffering in some way at the moment it finds a meaning” (Frankl, 2016). Just as the clinicians and staff found meaning in helping Jane and her family, I found meaning in helping the medical team. Helping providers to recognize their role in alleviating Jane’s social and existential suffering enabled them to experience deeper gratification in their efforts to relieve suffering (Lesho et al., 2009). Ultimately, both Jane and her medical team displayed courage in confronting their personal suffering. Thorop and colleagues recognize that “confronting the vulnerability of patients actualizes the vulnerability of care providers” (Thorup, Rundqvist, Roberts, & Delmar, 2012, p. 427). Allowing oneself to be vulnerable as a provider on the medical wards takes courage. As a healer, I offered the gift of presence and witness to providers, because active listening and focused presence are known to provide relief from suffering. (Kissane, 2000; Mount et al., 2007). I also offered relief of moral distress by actively engaging providers in moral dialogue.

One may legitimately ask: Is this the role of the bioethics consultant? Shouldn’t the chaplain or a psychologist provide this type of witness for patients/families and for the providers? I believe that bearing witness is a primary skill for all clinicians, and as ethicists we do this well every time we clarify a patient’s narrative. If resources for chaplains and psychologist are limited, and the bioethicist has these skills, offering an active listening and “healing presence” seems like time well spent for a bioethicist in an integrated health care role. By witnessing moral concerns, and facilitating space for reflection, a bioethicist can help to relieve moral distress in clinicians (Gleichgerrcht & Decety, 2013). Ultimately, everyone benefits: patients are likely to have better relationships with providers who are aware of their own emotions, and health care teams also function better (Schwartz Center for Compassionate Care—White Paper, 2015, March).

One could argue that the bioethicist is only palliating, not solving, a much larger problem. Self–awareness in providers is truly the key to recognizing and addressing suffering in both patients and providers (Connelly, 2009). But currently physicians and nurses are trained to hide their vulnerability. Providers who wish to help patients in their most vulnerable moments first need to face their own vulnerability (Thorup et al., 2012). Health care providers need support, guidance—and permission—to face their vulnerability and personal suffering (Ulrich et al., 2010). We must start somewhere, and allowing a bioethicist, as an integrated member of the health care team, to address provider moral distress may be a useful and valid starting place. I therefore conclude that the clinical bioethicist can have an active healing role as a member of the health care team by helping to relieve suffering not only for patients and their families, but for health care providers as well.

Discussion Questions

  1. 1. Is relief of suffering part of a clinical ethics consultation? Should it be? Why or why not?

  2. 2. How do you respond to suffering? What are your most productive responses? Unproductive responses?

  3. 3. Should a clinical ethicist be involved in clinical care without maintaining direct patient contact? If patients/families refuse ethics involvement, what role can the clinical ethicist play in promoting ethical medical decision–making?

  4. 4. When a clinical ethicist is also trained as a licensed health provider (e.g., physician, nurse, chaplain, or social worker), can prior clinical experience affect the ethicist’s role in responding to suffering? Can this be an advantage, a hindrance, or both?

Deborah L. Kasman
Kaiser Permanente Baldwin Park Hospital
Correspondence concerning this article should be addressed to Deborah L. Kasman, MD, MA, Kaiser Permanente Baldwin Park Hospital, 1011 Baldwin Park Boulevard, Baldwin Park, CA 91706. Email: Deborah.L.Kasman@kp.org

Conflicts of Interest. I am employed as a Bioethics director at the hospital where these events occurred. I acknowledge that this may have a potential impact upon my impression of this patient and her care.

Acknowledgments

I would like to thank Alain Durocher, PhD, and Malcolm Shaner, MD, for their thoughtful comments and reviews of the manuscript. I received permission to publish from the lead physician and the chaplain involved in this case, as well as from a lead administrator and the physician chair of our institution’s Bioethics committee. I would like to thank the patient and her family for allowing us all to be part of their personal journey. I have changed all patient and family identifiers in order to keep their identities anonymous.

References

Cassell, E. (1982). The nature of suffering and the goals of medicine. New England Journal of Medicine, 306(11), 639–645.
Connelly, J. E. (2009). The avoidance of human suffering. Perspectives in Biology and Medicine, 52(3), 381–91. [End Page 230]
Coulehan, J. (2012). Suffering, hope, and healing. In R. J. Moore (Ed.), Handbook of pain and palliative care: Behavioral approaches for the life course (pp. 717–731). New York, NY: Springer Science + Business Media, LLC.
Egnew, T. R. (2005). The meaning of healing: Transcending suffering. Annals of Family Medicine, 3(3), 255–262.
Frankl, V. (2106). Man’s search for meaning. Catholic Education Research Center. Retreived from http://wwwcatholiceducation.org/en/religion–and–philosophy/spiritual–life/man–s–search–for–meaning.html.
Gabel, S. (2013). Demoralization in health professional practice: Development, amelioration, and implications for continuing education. Journal of Continuing Education in the Health Professions, 33(2), 118–126.
Gleichgerrcht, E., & Decety, J. (2013). Empathy in clinical practice: How individual dispositions, gender and experience moderate empathic concern, burnout and emotional distress in physicians. PLoS One, 8(4), 1–12.
Kissane, D. W. (2000). Psycho–Spiritual and existential distress: The challenge for palliative care. Australian Family Physician, 29(11), 1022–1025.
LeMay, K., & Wilson, K. G. (2008). Treatment of existential distress in life threatening illness: A review of manualized interventions. Clinical Psychology Review, 28(3), 472–493.
Lesho, E., Foster, L., Wang, Z., Sarmiento, D., Dennison, S., Vahey, M., . . . Small, C. (2009). The accuracy of physicians’ perceptions of patients’ suffering: Findings from two teaching hospitals. Academic Medicine, 84(5), 636–642.
Mount, B. M., Boston, P. H., & Cohen, R. (2007). Healing connections: On moving from suffering to a sense of well–being. Journal of Pain and Symptom Management, 3(4), 372–388.
Oberle, K., & Hughes, D. (2000). Doctors’ and nurses’ perceptions of ethical problems in end–of–life decisions. Journal of Advanced Nursing, 33(6), 707–715.
Puchalski, C., Blatt, B., Kogan, M., & Butler, A. (2014). Spirituality and health: The development of a field. Academic Medicine, 89(1), 10–16.
Råholm, M.–B., & Lindholm, L. (1999). Being in the world of the suffering patient: A challenge to nursing ethics. Nursing Ethics, 6(6), 528–539.
Rice, E. M., Rady, M. Y., Hamrick, A., Verheijde, J. L., & Pendergast, D. K. (2008). Determinants of moral distress in medical and surgical nurses at an adult acute tertiary care hospital. Journal of Nursing Management, 16(3), 360–373.
Schroepfer, T. (2007). Critical events in the dying process: The potential for physical and psychosocial suffering. Journal of Palliative Medicine, 10(1), 136–147.
Schwartz Center for Compassionate Care—White Paper. (2015, March). Building compassion into the bottom line—The role of compassionate care and patient experience in 35 US hospitals. Boston, MA: Schwartz Center for Compassionate Care.
Thorup, C. B., Rundqvist, E., Roberts, C., & Delmar, C. (2012). Care as a matter of courage: Vulnerability, suffering and ethical formation in nursing care. Scandinavian Journal of Caring Science, 26(3), 427–435.
Ulrich, C., Hamric, A., & Grady, C. (2010). Moral distress: A growing problem in the health professions. Hastings Center Report, 40(1), 20–22.
Walker, M. U. (1993). Keeping moral space open: New images of ethics consulting. Hastings Center Report, 23(2), 33–40. [End Page 231]

Footnotes

1. All identifiers in this case have been either removed or changed.

2. Clostridium difficile (C. diff) is a common gastrointestinal organism that thrives, and becomes pathologic, in a host who is malnourished and/or immunocompromised

3. Because Jane’s family did not want Bioethics involved, and because the medical team easily discussed the ethical issues with me, I did not think that another professional questioning the family would be beneficial and might even be perceived as harassment.

Additional Information

ISSN
2157-1740
Print ISSN
2157-1732
Pages
223-231
Launched on MUSE
2017-01-19
Open Access
No
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