Featuring the work of Jana Botha-Smith

This January, The Minds of Barbara and Craig Geoff are celebrating the work of Jana Botha-Smith. She is a real up-and-comer in the field of palliative medicine, and we are excited to support her in this journey as our very first feature piece.

Jana is a graduate of the University of the Free State with clinical experience in intensive care and emergency medicine, as well as a recent graduand in Palliative Care at the University of Cape Town. She is enrolled for her Master of Philosophy in Palliative Medicine commencing in 2026.

Featuring the work of Jana Botha-Smith

Introduction

This portfolio follows the journey of a young woman whose devastating illness reshaped her life and my understanding of medicine and the meaning of care. Her case tested the boundaries of intervention and the humanity within clinical decision-making. What began as a pursuit of diagnosis evolved into an encounter with suffering, hope, and the fragile line between cure and comfort. In caring for her, I confronted the tension between doing all that is possible and doing what is right. The experience challenged my notions of success in critical care and revealed how silence and misplaced hope can compound suffering. It also revealed the quiet strength of families, whose love and resilience shaped the moral landscape of care.

Chronological Case Narrative

Presentation & Initial Management

The patient was an 18-year-old previously healthy young woman who presented to a regional hospital with unusual behaviour followed by seizures. Within days, she progressed into status epilepticus. Despite empirical treatment for possible central nervous system infection with ceftriaxone, Rifafour, and acyclovir, her seizures remained refractory to multiple anti-epileptic agents. She required intubation, deep sedation, and mechanical ventilation.

A CT brain and lumbar puncture were normal, and after ten days without neurological improvement, she was transferred to our tertiary ICU. On arrival, she was ventilated and sedated on midazolam and propofol. Receiving a regimen of sodium valproate and phenytoin. Her APACHE II score suggested a mortality risk of ~40%. Striking for someone so young and reflecting the immense physiological strain her body was under.

Shaping Events

Confirmation of Diagnosis

The diagnosis of anti-NMDA receptor encephalitis was suspected. This autoimmune encephalitis occurs when antibodies target NMDA receptors in the brain, disrupting excitatory neurotransmission. In young women, it is often associated with ovarian teratomas.

We pre-emptively initiated first-line immunotherapy with high-dose corticosteroids and intravenous immunoglobulin while awaiting confirmation of her diagnosis. The literature by Dalmau et al.[i] and Titulaer et al.[ii] shows that treatment can be effective if initiated early, but delays worsen outcomes.

By the time her diagnosis was confirmed around day 21 of her ICU admission following antibody testing, she had already endured prolonged status epilepticus and multidrug-resistant infections. This left little physiological reserve, and further immunosuppression with rituximab was deemed unsafe.

The Exploratory Laparotomy

Around day 23 of her ICU stay, an exploratory laparotomy was undertaken to exclude an ovarian teratoma. Because small teratomas can be missed on imaging, surgery was pursued as a last curative possibility despite a normal scan. The procedure, however, revealed no tumour.

Clinically, this moment should have marked a decisive shift from curative intent to comfort-focused care. The absence of a surgically reversible cause, coupled with the missed opportunity for rituximab, confirmed recovery was exceedingly unlikely. Yet, our continued active interventions for another two weeks reflected the team’s profound difficulty in letting go of curative hope.

For the family, the laparotomy symbolised hope – the belief that something could still be “fixed.” When her condition worsened afterwards, her father became convinced that the surgery itself had caused her decline. In truth, the disease had reached its natural terminal phase.

Diverging Prognostic Opinions

Disagreement within the treating team further complicated decision-making. ICU and Neurology could not agree on the prognosis. Neurology maintained optimism, suggesting full recovery without impairment, while ICU consultants spoke cautiously of survival with severe disability. Only two of us (me and another junior doctor) raised death as a likely outcome during ward rounds. When I attempted to explore how we should approach this with the family, my seniors remained silent. This silence sent a clear message: I was not to pursue these discussions.

The Limited Role of Palliative Care

Although the palliative care team became involved early, their role was largely peripheral. They facilitated family meetings and provided emotional support afterwards but were seldom present during key clinical discussions. Their guidance reached the family indirectly and was influenced by feedback from the ICU staff. As a result, palliative care functioned more as a consultative service than an integral part of the care plan. In retrospect, this limited engagement reflected a broader cultural barrier within critical care: the perception of palliative care as synonymous with withdrawal rather than partnership.

False Hope

False hope became an undercurrent throughout this admission. As her neurological condition deteriorated, she developed subtle facial twitching. To the medical team, these were myoclonic jerks. Reflexive movements signalling cortical irritation. To her family, however, they appeared deliberate, as if she were trying to communicate. In those movements, they saw signs of consciousness, intention, and life returning.

Explaining their reflexive nature was difficult; each discussion risked the fragile hope that sustained them. Yet allowing the misconception to persist also risked deepening their eventual grief.

Complications due to Treatment

The intensity of her treatment carried immense physical cost. Despite meticulous care, she developed profound muscle wasting, losing almost all the physical vitality that once defined her. Reintubations due to dislodgement of her endotracheal tube became more frequent and traumatic, culminating in barotrauma and a pneumothorax requiring an intercostal drain.

Each intervention intended to preserve life paradoxically deepened her suffering. She developed drug-induced rashes likely from anti-epileptic therapy, and repeated infections with multidrug-resistant organisms, including Acinetobacter and carbapenem-resistant Klebsiella. Each course of antibiotics grew more desperate, with colistin and tigecycline representing the end of the line.

Prolonged propofol infusion led to non-alcoholic fatty liver disease, a stark example of a life-sustaining drug contributing to her decline.

When her postoperative ileus developed, even the act of feeding her became complex. TPN was initiated, and we watched her body depend entirely on machines and infusions.

Late Ceiling of Care Discussion

Two days before her death, the ICU consultants raised the question of establishing a formal ceiling of care. By this point, she had developed new-onset septic shock with no signs of meaningful neurological recovery. The team agreed that further escalation would be futile. Yet when the limitation of treatment form was discussed with her mother, she hesitated, not yet ready to accept the finality that signing the form symbolised.

The timing of the discussion confronted the family with an abrupt shift from hope to finality. Lanken et al.[iii]in their international consensus guidelines, emphasise that treatment limitation should be approached as a gradual process rather than an abrupt event. Early recognition of poor prognosis allows for progressive adjustment of goals, consistent with the framework described by Truog et al.,[iv]who advocate for time-limited trials (clearly defined periods of active therapy followed by structured reassessment). Had such a trial been agreed upon, we might have transitioned to comfort care more gradually, reducing the emotional trauma experienced by the family.

Death & Family Meeting

Sedation was optimised for comfort. To allow her family time to arrive, we continued inotropes temporarily. This was a compassionate act that was intended to enable a final farewell and preserve the dignity of closure. Despite these efforts, she died on day 37 of her admission, just minutes before her family arrived.

The Palliative Care Team attended the final family meeting. When the family was called in, her mother initially could not face entering the room. I first spoke with her father, grandmother, aunt, and uncle. As they began to cry, the mother appeared at the doorway, understood instantly, and collapsed. Her distress escalated to breath-holding spells and writhing around on the floor, requiring a small dose of clonazepam to keep her from harming herself.

Key Palliative Care Domains

Pain Assessment and Management

While overt pain was not the most prominent feature in this patient’s presentation, maintaining comfort remained a constant priority throughout her ICU stay. As already mentioned, her experience included multiple invasive interventions. All these carried a significant burden of discomfort and distress.

Pain assessment relies on structured observation rather than verbal reports in critically ill, non-communicative patients. Tools such as the Critical-Care Pain Observation Tool (CPOT) and the Behavioural Pain Scale (BPS) were used to evaluate non-verbal indicators, including facial expression, muscle tension, ventilator synchrony, and limb movement. Physiological markers, such as tachycardia and hypertension, also guided titration, ensuring comfort was maintained even in deep sedation.

Her sedation and analgesia regimen was carefully titrated:

Ketamine (60 mg/h IV)served a dual function – controlling seizures via NMDA receptor antagonism and providing adequate analgesia.
Propofol (150 mg/h IV) and midazolam (10 mg/h IV) were used in combination for sedation and seizure suppression, contributing indirectly to comfort.
Perfalgan 1g IV q6h/PRNwas added to address background pain and was stopped at the first signs of liver impairment.

Pain management was reassessed following every invasive procedure, with doses titrated according to both behavioural indicators and physiological response.

Three Distressing Symptoms

1 | Refractory Seizures

Her illness was defined by persistent status epilepticus that remained refractory despite sodium valproate (800mg TDS IV), phenytoin (200mg TDS IV), phenobarbital (30mg TDS via NGT), and levetiracetam (1.5g BD via NGT). Doses of sodium valproate, phenytoin, and phenobarbital were titrated to therapeutic serum levels. Attempts to lighten sedation consistently led to seizure recurrence, confirming refractory disease. EEG monitoring, when available, guided adjustments and provided prognostic feedback.

2 | Dyspnoea and Agitation

Although she remained ventilated, dyspnoea and agitation were persistent challenges, especially during sedation breaks. Ventilator dyssynchrony would emerge rapidly, manifesting as tachycardia, hypertension, and visible distress. Management required fine-tuning of ventilator settings and deep sedation to restore synchrony. The decision to perform a tracheostomy was made to reduce airway trauma and improve long-term comfort and safety.

Daily chest physiotherapy assisted with secretion clearance and helped prevent ventilator-associated pneumonia. Regular suctioning, humidification, and careful positioning were incorporated into her care plan to optimise oxygenation and reduce infection risk.

3 | Fever

Fever was an almost constant companion throughout her ICU stay, driven by a combination of infectious and neurological causes. Recurrent sepsis accounted for many of the pyrexial episodes. However, as the illness progressed, her persistent temperature spikes also reflected central dysregulation of thermoregulatory pathways, a recognised feature of severe autoimmune encephalitis and prolonged status epilepticus.

Symptomatic management included Perfalgan (1 g IV PRN) and physical cooling measures, though fevers often resisted control despite these interventions.

We also reframed the symptom for the family, explaining that fevers were often an uncontrollable aspect of the encephalitis, not always a new infection. This helped shift their focus from seeking causes to managing their distress.

Individual Issues

As the weeks passed, the machines, medications, and monitoring devices gradually obscured the vibrant young woman she once was. Her identity risked being reduced to physiological parameters. In a quiet but powerful gesture, her family honoured her identity by placing a traditional head doek on her during one of their visits. This act affirmed her cultural roots and individuality within the highly medicalised ICU environment.

Another individual issue that became increasingly evident was the erosion of privacy within the ICU. The patient’s body was no longer her own; it became a site of examination, intervention and observation. Each exposure or bedside discussion risked reducing her to an object of care rather than a subject with inherent worth. Preserving privacy by small acts such as closing the curtains, covering her body after examinations and procedures, and speaking to her rather than about her became symbolic acts of respect and dignity.

Psychosocial and Family Issues

She was in Grade 11, preparing for her final years of school at a stage typically marked by independence, friendships, and identity formation. Her sudden, devastating illness transformed this adolescence into a prolonged medical crisis. For her family, the ICU admission was not merely a health emergency but a profound disruption of life’s natural trajectory. Her parents expressed grief not only for her physical suffering but also for the derailment of her future. A loss of both life and potential

As their only surviving child, her illness carried immeasurable weight. Her mother had lost another baby years earlier in the same hospital, a trauma that resurfaced sharply. Her grief was layered: anticipatory for the daughter she was losing and reactivated for the child she had already buried.

Family roles emerged clearly through the crisis. The maternal grandmother was a constant presence at the bedside, embodying quiet endurance while carrying her own double grief. Grief for her granddaughter and grief for her daughter’s pain. The aunt provided steady emotional support, while the uncle, a medical technologist, often acted as mediator between the clinical team and the family, translating complex information into terms they could better understand. The father, initially distant due to work, later became more involved. The mother, meanwhile, carried the heaviest emotional load. Her sorrow was unrelenting. Clearly visible in her posture, silence, and occasional desperate plea: “Doctor, please do something to fix her.”

Making decisions on the patient’s behalf weighed heavily on the family, who struggled to interpret her wishes without clear prognostic certainty. In the ICU, I learned that suffering rarely belongs to the patient alone. It radiates outward, touching everyone who loves them.

Spiritual and Cultural Issues

Spirituality and culture were central to how the family understood the patient’s illness and navigated their grief. However, her condition’s spiritual significance was not initially shared with me. Despite open invitations to discuss any traditional or cultural perspectives early in her admission, the family remained guarded. It was only later that they disclosed, to another staff member of the same cultural background, their belief that her illness was connected to her reluctance to fulfil a calling to become a sangoma.

This delayed disclosure revealed how cultural trust shapes communication. Families may withhold deeply personal beliefs until they feel psychologically safe, often confiding in someone they perceive as culturally aligned or spiritually understanding. Authentic engagement requires more than just asking about spirituality. It requires cultural humility and an environment of genuine acceptance, where families trust that their beliefs will be respected rather than dismissed.

The family brought traditional ointment to the ICU as part of their healing practice. While oral use was restricted due to safety concerns, topical application was permitted. This gesture, though seemingly small, held deep significance. It allowed them to express their faith and participate in her care in a way that honoured their traditions within a highly medicalised setting. In her final days, a sangoma accompanied the family for support. Although no rituals were performed in the ICU, her presence offered spiritual legitimacy and comfort.

What I Have Learned

This case marked a turning point in both my clinical and personal growth. It redefined what it means to care, to lead, and to let go. Every phase from decision-making to communication and ethics reshaped how I approach patients, families, and teams. The following insights capture the lessons that now guide my daily practice.

Patient-Centredness vs Doctor-Centredness: An Ethical Analysis

One of the most significant lessons from this case was the distinction between patient-centredness and doctor-centredness. Ethical dilemmas spread throughout every phase of care, and in retrospect, many arose from a doctor-centred perspective. Too often, our discussions revolved around what more could be done, rather than what mattered most to the patient. The laparotomy, repeated courses of antibiotics, and prolonged sedation reflected persistence, but not purpose. Driven by our discomfort with stopping, rather than by her comfort or dignity.

This persistence led to significant harms, forcing a confrontation with the principles of beneficence and non-maleficence. Our continuation of invasive therapy despite an irreversible trajectory reflected what Schneiderman et al.[v] describe as therapeutic momentum: care that persists because it has begun, not because it continues to heal. The harms I witnessed, such as the propofol-induced liver disease and the negative laparotomy, were stark examples of this momentum.

This tension was especially evident in the management of her multidrug-resistant infections. Each new infection forced us to weigh the diminishing likelihood of individual benefit against the broader ethical duty of antimicrobial stewardship. This embodies the principle of distributive justice, which demands fairness in the allocation of limited medical resources. In our doctor-centred effort to save one life, we risked contributing to a collective harm: the vulnerability to resistant pathogens that threatens all patients.

Paradoxically, ICU admission also offered certain ethical benefits that were consistent with beneficence. Despite the burdens of invasive care, the setting ensured one-on-one nursing attention, meticulous symptom control, and flexible visiting hours – conditions that supported comfort and family presence.

Furthermore, because of her prolonged sedation and mechanical ventilation, the patient was unable to participate in decisions and lost her autonomy. The medical team made every major decision in collaboration with her family. An earlier ceiling-of-care discussion would have better honoured beneficence, non-maleficence, and relational autonomy by giving the family time to accept and prepare for the inevitable. It became clear that our reluctance to set limits enabled an escalation that prolonged suffering, showing how easily our well-intentioned, doctor-centred actions can breach ethical boundaries.

This analysis confirms what I had felt instinctively: genuine patient-centredness is inseparable from preserving personhood. In the ICU, where technology dominates, the boundaries of personhood can erode. As Walker and Lovat[vi] remind us, even when patients cannot participate in decisions, their autonomy persists through their web of relationships. To honour these links is to acknowledge that care extends beyond physiological maintenance – it is about safeguarding identity, meaning, and connection. This ethical failure to remain patient-centred was not an individual error but a systemic one, rooted in the team’s structure.

Ethical tension culminated in the final decision to briefly continue inotropes for the family. This act represented an ethical compromise, balancing the principle of non-maleficence (not prolonging the dying process) against the palliative imperative of beneficence (honouring the family’s need for closure). That this compassionate gesture ultimately failed, with the family arriving minutes too late, painfully underscores how earlier communication failures created the need for such a desperate, last-minute intervention.

Palliative Integration as the Foundation for Teamwork, Communication, and Moral Resilience

This case powerfully demonstrated that the lack of proper palliative integration was the root cause of our team’s fractured communication, the family’s traumatic experience, and the team’s subsequent moral distress. Despite many disciplines participating, our teamwork lacked coherence. This prognostic dissonance (with Neurology expressing optimism, ICU consultants remaining guarded, and junior staff silenced) created fractured hope. Nursing staff, who had the most continuous contact, frequently questioned each other whether we were prolonging suffering, yet their insights seldom shaped decision-making.

The case revealed that silence can wound as deeply as words. Without honest, unified feedback, the family continued to believe recovery was possible, leaving them ill-prepared for her death. Research confirms that early, consistent communication is essential. Scheunemann et al.[vii] show that families who receive timely updates experience less complicated grief. In contrast, our approach mirrored what Truog et al.^iv describe as late-stage disclosure, which magnifies trauma and erodes trust.

This disconnect produced profound moral distress, a state Jameton[viii] defines as knowing the ethically appropriate action but being constrained from carrying it out. This precisely captured my experience: I recognised that continued escalation was causing harm yet lacked the authority to alter the course. This powerlessness stemmed directly from a lack of psychological safety. An environment where, as Edmondson[ix] highlights, clinicians cannot express concerns or disagreement without fear, which weakens team learning. This failure of moral coherence is precisely what proper palliative care integration aims to prevent.

In response, I scheduled a session to debrief this case and introduce the principles of palliative care, empowering colleagues to voice palliative perspectives with confidence.

Strengthening collective understanding can help build a culture where united, informed voices influence consultants’ perspectives and embed palliative thinking within acute care. This reflects what LaSala and Bjarnason[x] term moral courage – defined as acting ethically despite fear or institutional barriers, cultivated through shared empowerment and supportive environments.

Subsequently, I also reached out to the Palliative Care Team. I specifically discussed our team’s shortcomings and followed up on the bereavement counselling process. This follow-up confirmed that the mother, who was struggling profoundly with her grief, had been referred to a local psychologist and that our social worker was also conducting regular telephonic check-ins to support her. These conversations were a crucial reminder that our ethical obligations extend beyond the moment of death to the well-being of families.

Through this, I learned that, when acknowledged, moral distress can become a catalyst for moral resilience, as Rushton et al.[xi] define it: the capacity to sustain integrity in the face of moral adversity. For me, reflective practices (specifically painting) became essential tools for transforming moral pain into moral clarity. It became more than just a coping mechanism; it was my way of cultivating the very moral resilience needed to face the taxing complexities of my work.

Finally, I have come to understand that confronting silence is a moral act in itself. I am now committed to advocating for early palliative collaboration through joint ward rounds and shared family discussions to embed conversations about comfort and dignity from the outset. I will name my concerns openly, seek allies to support difficult conversations, and advocate for unified communication. This is not merely a matter of clinical accuracy. It is an act of compassion and protection for families navigating the most vulnerable moments of their lives.

Evidence of Reflective Learning

Emotional Impact and Coping

After her death, I left the hospital completely drained. The intensity of that final family meeting reverberated long after I walked out the ICU doors. I carried her mother’s cries home with me, and they lingered. In those moments, I realised something vital about palliative medicine – resilience cannot be built on detachment. To care deeply and sustainably, one must find ways to engage with grief without being consumed by it. We cannot protect ourselves by turning away; we protect ourselves by finding meaning in what we witness.

Turning to Creativity

During this admission, I increasingly turned to acrylic painting to process emotion. What began as a quiet hobby evolved into a deeply therapeutic practice: a sacred space where I could translate anguish into image and weight into colour. Painting gave form to what words could not express, reminding me that healing (even for clinicians) often arises from creativity, not just intellect.

My creative process became grounded in a quiet ritual. Before each painting, after choosing a piece from The Art Sherpa that resonated with the emotions I was experiencing, I would light a candle. This simple act held a dual purpose: it was a remembrance for the lives lost in the ICU, and a personal tribute to my mother, who passed away in 2023. In that quiet moment, a space was created to bridge the clinical world of medicine with the personal act of mourning and the search for meaning.

The Hummingbird: This painting became a symbol of moral resilience. Its ability to hover in stillness amid motion mirrored the inner calm I strive to cultivate in the occasional chaos of ICU care. The hummingbird’s striking colours reminded me of the vibrancy and uniqueness of every patient. Each life reflects its own hues of love, relationships, and meaning. In palliative care, we are called to see that spectrum of humanity and to honour it fully. The painting thus became both a lesson in steadiness and a celebration of life’s colour.

The Pansy: With its vibrant purples, radiant yellows, and fiery orange core, this painting came to symbolise the patient before illness – glowing, youthful, and full of promise. In painting it, I was trying to preserve the memory of her vitality. A quiet act of remembrance against the erasure that critical illness can bring.

The raw, overwhelming grief I witnessed in this case felt like an Abstract Wave: crashing, suffocating, and cyclical, much like the one that engulfed the patient’s mother. It was a visceral force. I saw it ‘crash’ over her when she collapsed during the final family meeting and ‘suffocate’ her in literal breath-holding spells. The ‘cyclical’ nature was its most relentless part, reflecting how grief comes and goes in unpredictable stages. It wasn’t a linear progression. One moment, the family would be carried by a current of hope or denial, seeing her twitches as communication or pleading for a “fix”. Next, the wave would pull them under into overwhelming despair or even anger, like her father blaming the surgery for her decline.

The Raven: Of all the works, this painting became the most significant. At first glance, the bird’s blackness conveys heaviness and darkness, mirroring the bleakness of her prognosis. Yet when sunlight strikes its feathers, iridescent colours shimmer – blues, greens, and purples emerging from the black. For me, this became a profound metaphor for realistic hope. Hope in this case was not about survival or a cure. Those possibilities had long passed. Instead, it was about redefining hope: hope for a pain-free and seizure-free day, hope for dignity in dying, hope for cultural and spiritual rituals to be honoured. By painting the raven with only subtle touches of colour, I reminded myself that hope must remain proportionate and grounded. To oversaturate the feathers with colour would have been to indulge in unrealistic optimism. Mirroring the very false hope that fragmented communication had allowed to take root in her family. Realistic hope, like the raven’s iridescence, is delicate and dependent on the angle of light – yet no less beautiful.

Evidence of Reflective Learning

Emotional Impact and Coping

Turning to Creativity

Conclusion

Care is measured not by how long we preserve life, but by how we honour its meaning. Medicine requires recognising when to act and when to comfort. In the ICU, the boundary between hope and harm is razor-thin, and recognising when intervention becomes harm is an act of compassion, not surrender.

Patient-centredness begins with truth. Prognostic silence can cause as much suffering as illness itself, reinforcing my commitment to transparent, compassionate communication. Such honesty is not only a clinical skill but an ethical act of respect that shapes how families live through dying.

My respect for palliative care principles, such as shared decision-making, honest teamwork, and holistic care, has deepened. The evidence is unequivocal that palliative involvement improves symptom control, enhances satisfaction, and reduces unnecessary interventions.^[xii] I no longer see palliative care as an endpoint, but as an integral part of all treatment: a shift from cure to comfort, from prolongation to presence. This case reaffirmed my commitment to accompany others in their most vulnerable moments with humility, courage, and truth. That is the essence of palliative medicine.

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[xii] Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA. 2016;316(20):2104–14.