Structured Framework for Multidisciplinary Parent Counseling and Medical Interventions for Fetuses and Infants with Trisomy 13 or Trisomy 18.

OBJECTIVE: Trisomy 13 (T13) and 18 (T18) are aneuploidies associated with multiple structural congenital anomalies and high rates of fetal demise and neonatal mortality. Historically, patients with either one of these diagnoses have been treated similarly with exclusive comfort care rather than invasive interventions or intensive care, despite a wide phenotypic variation and substantial variations in survival length. However, surgical interventions have been on the rise in this population in recent years without clearly elucidated selection criterion. Our objective was to create a standardized approach to counseling expectant persons and parents of newborns with T13/T18 in order to provide collaborative and consistent counseling and thoughtful approach to interventions such as surgery. STUDY DESIGN: This article describes our process and presents our resulting clinical care guideline. RESULTS: We formed a multi- and interdisciplinary committee. We used published literature when available and otherwise expert opinion to develop an approach to care featuring individualized assessment of the patient to estimate qualitative mortality risk and potential to benefit from intensive care and/or surgeries centered within an ethical framework. CONCLUSION: Through multidisciplinary collaboration, we successfully created a patient-centered approach for counseling families facing a diagnosis of T13/T18. Other institutions may use our approach as a model for developing their own standardized approach. KEY POINTS: · Trisomy 13 and trisomy 18 are associated with high but variable morbidity and mortality.. · Research on which patients are most likely to benefit from surgery is lacking.. · We present our institution's framework to counsel families with fetal/neonatal T13/T18..

"More than conquerors": a qualitative analysis of war metaphors for patients with cancer.

PURPOSE: Meaning-making is fundamental to the cancer experience and communication within cancer care is saturated with metaphors. The objective of this study was to better understand the impact and function of war metaphors among patients with cancer. METHODS: Patients at the Duke Cancer Center were purposively sampled for inclusion based on type and stage of their cancer. Each patient underwent a semi-structured interview to explore their use of metaphors in their lived experience with cancer. Qualitative interviews broadly explored two key areas of interest: (1) frequency and use of metaphors to describe cancer diagnosis, treatment, or survivorship; (2) function and impact of the war metaphor on the patient experience of cancer. RESULTS: Fifteen participants with either breast, lung, or colorectal cancer were interviewed. Most patients used metaphor themes of journey, war, and mystery to describe their cancer. All patients with non-metastatic disease used war metaphors and described how these metaphors facilitated meaning-making by promoting positivity and situating cancer within a larger life story. The few patients who did not use war metaphors had metastatic disease, and they explained that war metaphors were unhelpful due to feeling a lack of control over their metastatic disease and outcomes. CONCLUSION: The war metaphor should remain an integral part of cancer care. Disregarding war metaphors robs patients of an important framework for meaning-making-one that may promote strength, continuity, and resilience in navigating cancer.

Patient and Hospital Characteristics of Newborns with Neonatal Withdrawal Syndrome.

OBJECTIVES: We sought to evaluate hospital resource usage patterns and determine risk factors for neonatal withdrawal syndrome (NWS) in the United States. METHODS: Using the 2016 Kids' Inpatient Database (KID), we conducted a retrospective cross-sectional analysis of a nationally representative sample of neonates with NWS. The KID is the largest publicly available pediatric (20 years of age and younger) inpatient care database in the United States. We analyzed a stratified probability sampling of 3.1 million pediatric hospital discharges weighted to 6.3 million national discharges. Descriptive statistics for hospital and patient characteristics were identified and binary variables were analyzed using the Student t test. Multivariate regression was performed to assess the predictors of NWS. We excluded discharges if total cost or hospital length of stay (LOS) exceeded mean values by >3 standard deviations. Hospitalizations with NWS diagnosis were identified using the International Classification of Diseases, 10th Revision, Clinical Modification code P96.1 in any 1 of 30 discharge diagnostic fields. RESULTS: We estimated that 25,394 pediatric discharges were associated with an NWS diagnosis, totaling 403,127 inpatient days at a cost of $1.8 billion. Compared with non-NWS newborns, neonates with NWS had higher mean hospital charges ($71,540 vs $15,765), longer mean hospital stays (16 days vs 3 days), and a significantly higher proportion of low birth weight (7.2% vs 1.9%), feeding problems (19.0% vs 3.5%), respiratory diagnoses (5.6% vs 2.5%), and seizure (0.3% vs 0.1%). Among newborns with NWS, 53% were boys, 80.0% were white, 7.2% were black, 7.4% were Hispanic, and 5.3% were of other races. Hispanic neonates had the highest mean hospital charges and LOS of any other ethnic group ($123,749, 21 days). The largest proportion (83.0%) of NWS-related hospital stays were billed to Medicaid, followed by private insurance (10.3%) and self-pay (4.8%). More than one-third of NWS-related discharges (39.3%) occurred in areas with the lowest mean household annual income (≤$42,999) compared with 28.4% of neonates without NWS. Most NWS cases (53%) had ≥5 diagnoses, compared with 11% of non-NWS neonates. In the multivariate analysis, neonates with a birth weight <2500 g, feeding problems, respiratory diagnoses, seizure, >4 diagnoses, LOS >5 days, rural hospitals, Medicaid, and low-income households were significantly associated with NWS. There was a statistically significant mean hospital charge difference of $55,775 between NWS and non-NWS neonates. CONCLUSIONS: Since 2000, the number of infants treated for NWS in the US neonatal intensive care units has increased fivefold, accounting for an estimated $1.5 billion in annual hospital expenditures. The high hospital resource usage among NWS neonates raises the possibility that care for expectant mothers who use opiates and their newborns may be able to be delivered in a more efficient and effective manner. Because the majority of the study population was covered by Medicaid programs, state policy makers should be mindful of the impact the opioid crises continue to have on expectant mothers and their infants.

What We Mean When We Talk About Suffering-and Why Eric Cassell Should Not Have the Last Word.

This paper analyzes the phenomenon of suffering and its relationship to medical practice by focusing on the paradigmatic work of Eric Cassell. First, it explains Cassell's influential model of suffering. Second, it surveys various critiques of Cassell. Next it outlines the authors' concerns with Cassell's model: it is aggressive, obscure, and fails to capture important features of the suffering experience. Finally, the authors propose a conceptual framework to help clarify the distinctive nature of subjective patient suffering. This framework contains two necessary conditions: (1) a loss of a person's sense of self, and (2) a negative affective experience. The authors suggest how this framework can be used in the medical encounter to promote clinician-patient communication and the relief of suffering.

It Starts With a Story: A Four-Step Narrative-Based Framework for Serious Illness Conversations.

Background: As a key component of advance care planning, serious illness conversations form a core intervention in palliative care. To achieve effective serious illness conversations, acknowledgment and inclusion of patient sense of self and identity are critical. However, no framework exists to describe how goals, values, and choices relate to patient identity. This conceptual gap hinders the advancement of palliative care education and practice. Objective: This philosophical investigation aimed to explicate two items: first, a novel conceptual framework for serious illness conversations; second, a structured approach to optimize these conversations within the palliative care clinical context. Methods: A philosophical and theoretical analysis was performed within an interdisciplinary context, by scholars in palliative care, medical humanities, philosophy, and bioethics. Key literature in psychology, qualitative research on the experience of serious illness, medical ethics, and choice architecture in medical decision-making were reviewed, and a structured conceptual and narrative analysis was performed. Results: An original and innovative identity-centered conceptual framework for serious illness conversations was developed. The framework consists of a four-step, reproducible approach: (1) attend to patient narrative identity, (2) identify values, (3) cocreate goals, and (4) actively promote choices. In short: attend, identify, create, and promote (AICP). Discussion: By using this conceptual framework and four-step approach, clinicians can accomplish goal-concordant serious illness care and build rich clinical relationships that foster trust and goodwill.

Tyler Tate replies.

The author responds to a letter by D. Brendan Johnson in the July-August 2023 issue of the Hastings Center Report concerning his and Joseph Clair's article "Love Your Patient as Yourself: On Reviving the Broken Heart of American Medical Ethics."

Love Your Patient as Yourself: On Reviving the Broken Heart of American Medical Ethics.

This article presents a radical claim: American medical ethics is broken, and it needs love to be healed. Due to a unique set of cultural and economic pressures, American medical ethics has adopted a mechanistic mode of ethical reasoning epitomized by the doctrine of principlism. This mode of reasoning divorces clinicians from both their patients and themselves. This results in clinicians who can ace ethics questions on multiple-choice tests but who fail either to recognize a patient's humanity or to navigate the ethical quandaries into which they are frequently thrown. Drawing on personal experience as well as the philosophical work of Augustine of Hippo, Simone Weil, and Iris Murdoch, we propose a novel ethical approach grounded in a conception of neighbor love, specifically, the virtue of love understood as attention to a sufferer's humanity. We conclude with five practical recommendations for reimagining medical ethics education oriented around the virtue of love.

Maternal-fetal surgery as part of pediatric palliative care.

Maternal-fetal surgical interventions have become a more common part of prenatal care. This third option, beside termination or post-natal interventions, complicates prenatal decision-making: while interventions may be lifesaving, survivors may face a life with disability. Pediatric palliative care (PPC) is more than end of life or hospice care, it aims at helping patients with complex medical conditions live well. In this paper, we briefly discuss maternal-fetal surgery, challenges regarding counseling and benefit-risk evaluation, argue that PPC should be a routine part of prenatal consultation, discuss the pivotal role of the maternal-fetal surgeon in the PCC-team, and finally discuss some of the ethical considerations of maternal-fetal surgery. We illustrate this with a case example of an infant diagnosed with congenital diaphragmatic hernia (CDH).

"A Shell of My Former Self": Using Figurative Language to Promote Communication About Patient Suffering.

While the relief of suffering is an important goal of medicine, suffering is often missed or ignored in clinical practice. We believe that this occurs for two reasons. First, clinicians often approach suffering by focusing on the causes of suffering rather than the experience of suffering. Second, the subjective nature of suffering makes it difficult to discuss. To address these gaps, we read 52 relevant works of literature and performed qualitative analysis to categorize figurative language into themes of psychological (i.e., non-physical) suffering. We identified 254 excerpts of figurative language characterizing psychological suffering. Among these excerpts, 13 salient themes recurred, including: brokenness, diminishment, disorientation, drowning, emptiness, imprisonment, battle, darkness, isolation, invisibility, lifelessness, punishment, and torture. The development of a shared language of suffering can foster a therapeutic patient-clinician relationship and improve clinicians' ability to recognize and address a patient's experience of suffering.

When Following the Rules Feels Wrong.

The Covid-19 pandemic has created a clinical environment in which health care practitioners are experiencing moral distress in numerous and novel ways. In this narrative reflection, a pediatric palliative care physician explores how his hospital's strict visitation policy set the stage for moral distress when, in the early months of the pandemic, it prevented two parents from being together at the bedside of their dying child.

Can Parents Restrict Access to Their Adolescent's Voice?: Deciding About a Tracheostomy.

Parents are the default decision-makers for their infants and children. Their decisions should be based on the best interests of their children. Differing interpretations of children's best interests may be a source of conflict. Providers' biased evaluations of patients' quality of life may undermine medicine's trustworthiness. As children mature, they should participate in medical decision-making to the extent that is developmentally appropriate. In this month's Ethics Rounds, physicians, a philosopher, and a lawyer consider parents' demand, supported by the hospital's legal department, that their 17-year-old son be excluded from a potentially life-and-death medical decision.

Pediatric Suffering and the Burden of Proof.

The alleviation of suffering has always been central to the care of the sick. Yet as medical technology has advanced and life-sustaining treatments multiplied, medicine's capacity to both prevent and create suffering has grown exponentially. In pediatric medicine, the ability to stave off death with life-sustaining treatments allows children to survive but also to suffer in ways that are diverse and unprecedented. However, although parents and pediatric clinicians broadly agree that all children can suffer, there is little published literature in which researchers analyze or clarify the concept of pediatric suffering. This gap is worrisome, especially in light of growing concerns that the label of suffering is used to justify end-of-life decision-making and mask quality-of-life determinations for pediatric patients with profound neurologic impairment. Moreover, the awareness that some children can experience suffering but cannot communicate whether and how they are suffering creates a problem. Does the determination of suffering in a nonverbal child lie in the judgement of clinicians or parents? In this article, I will address several important questions related to the suffering of children through an analysis of two prevalent conceptualizations of pediatric suffering and suggest a possible avenue forward for future scholarship.

What we talk about when we talk about pediatric suffering.

In this paper I aim to show why pediatric suffering must be understood as a judgment or evaluation, rather than a mental state. To accomplish this task, first I analyze the various ways that the label of suffering is used in pediatric practice. Out of this analysis emerge what I call the twin poles of pediatric suffering. At one pole sits the belief that infants and children with severe cognitive impairment cannot suffer because they are nonverbal or lack subjective life experience. At the other pole exists the idea that once child suffering reaches some threshold it is ethical to eliminate the sufferer. Concerningly, at both poles, any particular child vanishes from view. Second, in an attempt to identify a theory of suffering inclusive of children, I examine two prominent so-called experiential accounts of suffering. I find them both wanting on account of their absurd entailments and their flawed assumptions regarding the subjective experiences of people who cannot communicate expressively. Finally, I extend arguments found in Alastair MacIntyre's Dependent Rational Animals to argue that child suffering can be understood only as a set of absences-absences of conditions such as love, warmth, and freedom from pain. An evaluation of these absences reveals the exquisite dependency of children. It also discloses why pediatric suffering is necessarily a social and political event. Unlike adults, children will never be either the authors or the mitigators of their own suffering. Rather, children must rely wholly on others in order to resist suffering, grow, and flourish.

Your Father's a Fighter; Your Daughter's a Vegetable: A Critical Analysis of the Use of Metaphor in Clinical Practice.

There are two widespread beliefs about the use of metaphors in clinical medicine. The first is that military metaphors are harmful to patients and should be discouraged in medical practice. The second is that the metaphors of clinical practice can be judged by and standardized in reference to neutral criteria. In this article, I evaluate both these beliefs, exposing their shared flawed logic. This logic underwrites the false empiricist assumptions that metaphorical language and literal language are fundamentally distinct, play separate roles in communication, and therefore can be independently analyzed, systematized, and prescribed. Next, using the resources of ordinary language philosophy, I lay out a theoretical view of medical metaphors that is grounded in metaphor use within clinician-patient relationships. Finally, drawing on the work of philosopher Max Black, I diagram a practical conceptual framework for clinicians to use when they consider whether a metaphor is appropriate for a specific patient encounter.

Empathetic Practice: The Struggle and Virtue of Empathizing with a Patient's Suffering.

In this article, our analysis of empathy in the clinical context hinges on the complexities of patients who are acutely suffering. Using a case concerning a heart transplant patient with Duchenne muscular dystrophy, Alex, and his nurse, Joe, we investigate how empathy's phenomenological nebulousness can generate doubts about its virtue. Even when asking, "How are you, Alex?" Joe hates the question; it seems empty, silly. Cases like this show both that the enactment of empathy is sometimes challenging and that it can be reasonable to wonder if empathy is a virtue at all. Perhaps Alex's suffering is simply too massive: Joe cannot possibly know how he feels, so why try? Perhaps empathy would only cause Joe to suffer along with Alex. Not only is empathy difficult to produce in the context of Alex's suffering; it may not even be possible; and if we simply cannot muster empathy, what is the point of morally demanding it? In response, we distinguish different kinds of empathic engagements from one another and offer separate counsel. We argue that it is important to understand empathy as something that must be honed across varied contexts before it can be called a virtue. Conceptualizing and operationalizing empathy in this way helps to ground its possibility and virtue even in the most challenging and complex clinical encounters.

"I'm Not a Spiritual Person." How Hope Might Facilitate Conversations About Spirituality Among Teens and Young Adults With Cancer.

CONTEXT: Supporting patients' spiritual needs is central to palliative care. Adolescents and young adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs. OBJECTIVES: To 1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither and 2) identify language to support AYAs' spiritual needs in keeping with their self-identities. METHODS: In this mixed-methods, prospective, longitudinal cohort study, AYAs (14-25 years old) with newly diagnosed cancer self-reported their "religiousness" and "spirituality." One-on-one, semistructured interviews were conducted at three time points (within 60 days of diagnosis, six to 12 months, and 12-18 months later) and included queries about spirituality, God/prayer, meaning from illness, and evolving self-identity. Post hoc directed content analysis informed a framework for approaching religious/spiritual discussions. RESULTS: Seventeen AYAs (mean age 17.1 years, SD = 2.7, 47% male) participated in 44 interviews. Of n = 16 with concurrent survey responses, five (31%) self-identified as both "religious and spiritual," five (31%) as "spiritual, not religious," one (6%) as "religious, not spiritual," and five (31%) as neither. Those who endorsed religiousness tended to cite faith as a source of strength, whereas many who declined this self-identity explicitly questioned their preexisting beliefs. Regardless of self-identified "religiousness" or "spirituality," most participants endorsed quests for meaning, purpose, and/or legacy, and all included constructs of hope in their narratives. CONCLUSION: AYA self-identities evolve during the illness experience. When words such as "religion" and "spirituality" do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative.

The Clue.

As I stood outside of Carlos's room, I felt caught on the horns of a dilemma. It seemed impossible to truly "be there" for Carlos without sacrificing my other intern duties. This tension pervaded much of my residency training, as I often found myself spending more time completing chart notes, answering pages, and giving sign out than I did at the bedside with my patients. I knew I had a duty to "do my job"-I could not let my team down. But what about my duty to Carlos, a duty to act on my intuition and try to "get to the bottom" of his illness, if that was even possible? And what about my thirteen other patients? Wasn't I was their doctor as well? I have spent countless hours studying the ethical frameworks for medical rationing. And yet no framework could have told me how to weigh my intuition in that crucial moment of decision-making, or when it was okay to leave a few notes unfinished in order to have the time to talk with Carlos. Suddenly, I knew what I had to do.

Controversy About Dialysis for an Adolescent.

For patients on dialysis, 1 frequent cause of death is their voluntary decision to discontinue dialysis. Such decisions raise complex questions when the patient is a competent adult. The decisions are even more complex when the patient is an adolescent. In this article, we present a case in which a 17-year-old adolescent decided that she no longer wished to undergo dialysis through her fistula. Her doctors thought that dialysis using any other technique would be too dangerous. Four experts in pediatric nephrology, bioethics, and palliative care discuss this decision and the different ways that the health care team might respond.