This case history illustrates how moral distress can accumulate when clinical uncertainty persists across a prolonged, highly complex trajectory. Rather than arising from a single ethically fraught encounter, distress emerged cumulatively as the care team navigated repeated transitions, fragmented responsibility across settings, and evolving goals of care in the context of a young patient with psychiatric comorbidity and difficult-to-interpret suffering. We trace how case-based uncertainty contributed to cumulative moral distress and then identify targeted implications for supporting clinicians participating in aid-in-dying care.
A highly complex patient with an uncertain trajectory leads to staff moral distress: Supporting Well-Being of Providers Involved with Aid in Dying
Romina Rosen, MD1, Deborah Ling Grant, PhD2, Julia K. Nguyen, PharmD3, Sina Radparvar, MD4
1. Kaiser Permanente Southern California Permanente Medical Group, Geriatrics and Continuing Care, Woodland Hills CA
2. Kaiser Permanente Southern California Permanente Medical Group, Research & Evaluation, Pasadena, CA
3. Kaiser Permanente Southern California Home Infusion Pharmacy, Panorama City, CA
4. Kaiser Permanente Southern California Permanente Medical Group, Addiction Medicine, Panorama City, CA
Corresponding author: Julia K. Nguyen, PharmD; Panorama City, CA; email: Julia.K.Nguyen@kp.org
Journal of Aid-in-Dying Medicine, Issue 3, September, 2026

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Keywords: aid-in-dying, end-of-life care, mental health, pain management, opioid use disorder, moral distress, integrated healthcare systems
The California End of Life Option Act (EOLOA) allows California residents who are terminally ill to request a medication for self-ingestion from their physician to end their lives. According to the 2024 California Department of Public Health (CDPH) End of Life Option Act report, 346 physicians prescribed medication for 1,591 individuals, of whom 1,032 ingested the medications. Among those who ingested, 92.1% were aged 60 years or older and 47.7% had a physician or trained health care provider present [1]. Despite a 20% increase in prescriptions from the prior year, the number of clinicians willing or able to participate grew by only 0.9%.
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Limited public awareness, fewer aid-in-dying practitioners per capita, and sparse support by healthcare institutions have contributed to lower rates of population-level utilization in California relative to other countries with long-standing aid-in-dying policies [2,3,4]. This widening gap may be attributed to California’s voluntary participation provision, which allows individual clinicians and healthcare institutions to decline involvement for “reasons of conscience, morality, or ethics.” As a result, nearly two-thirds of hospitals prohibit prescribing aid-in-dying medications, substantially limiting patient access despite increasing demand [5]. Furthermore, individual providers who are considering supporting patients in aid-in-dying are confronted with a long list of requirements: deciding whether a requestor has mental capacity to make an informed decision (e.g., understands medical conditions, risks, and results of ingestion of aid-in- dying medication and is aware of other available options) and confirming lack of coercion in the decision-making process. The additional workload can also be under- or uncompensated.
The emotional impact for clinicians participating in aid-in-dying care remains poorly understood, and the development of evidence-based strategies to support provider well-being has emerged as a critical research priority for sustainability of the healthcare system to sufficiently meet demand [6]. In addition to unaddressed mental health needs, clinicians involved in aid-in-dying commonly report challenges related to lack of professional support, isolation, limited peer support, value-based tensions, gaps in training and preparedness, strained professional relationships, and broader system-level impacts [7,8]. Together, these factors contribute to workforce vulnerability and underscore the need for structured approaches that promote sustainability in aid-in-dying practice.
Systematic reviews of clinician experiences with aid in dying have identified several recurrent emotional domains: 1) intense and internally processed emotions, often expressed as moral distress or the psychological response to morally challenging situations; 2) reflective emotions arising from meaning-making and professional growth; and 3) emotions closely aligned with clinicians’ professional values and the contextual factors shaping care delivery [9]. Across both quantitative and qualitative studies, a substantial proportion of clinicians report adverse emotional effects, with estimates ranging from 45%-80%, yet only a minority of them seek formal or informal support [10].
In many settings, access to aid in dying is facilitated through individual clinicians or select hospice organizations, often requiring patients to transition rapidly into a parallel care pathway for a relatively brief period. In these models, coordination among the attending/prescribing clinician, consulting/second opinion clinicians, ancillary evaluations, and medication management may be limited. Longitudinal relationships with the care team are uncommon.
In contrast, we present the experience of a large, nonprofit, integrated healthcare system that delivers comprehensive preventive, specialty, and acute medical care to approximately 25% of the population (4.7 million members) whose demographic characteristics reflect the socioeconomic and ethnic diversity of California. While health insurance plans are not required to cover the cost of aid-in-dying medications, our healthcare system offers temporary medical financial assistance to help qualified patients based on their financial need regardless of whether they have health insurance, are uninsured, or are underinsured. Under this umbrella, covered healthcare includes emergency, urgent, or medically necessary care, as well as pharmacy services and products. Within this system, patients with terminal illness are routinely supported through established palliative and hospice services and, when consistent with patient preferences, may enter a unique, formalized end-of-life option program.
This program enables eligible adults to request aid-in-dying medications within a structured, interdisciplinary framework. Patients are typically identified earlier in their illness trajectories and followed over a longer duration through standardized evaluation, care coordination, and treatment processes, allowing aid-in-dying to be integrated into a broader continuum of end-of-life care. Our program has been previously characterized as similar to other established models with the exception that a higher percentage of patients proceed with ingestion of aid-in-dying drugs, possibly due to longer follow-up time. This association may reflect survivorship bias whereby patients can live long enough, retain capacity, experience worsening symptom burden, solidify their decision through therapeutic alliance with providers, and complete the aid-in-dying process [11].
Additional defining features of this program include formal training for participating physicians, pharmacists, and dedicated clinical social work coordinators in a medical aid-in-dying system. These coordinators support patients, families, and clinicians and ensure regulatory and ethical fidelity throughout the process. They perform psychosocial assessments, ensure the integrity of informed consent and compliance with legal requirements, and are available for staff debriefing after patient deaths. Providers participate in regularly occurring peer-support groups that include leaders representing medicine, pharmacy, social medicine, and bioethics service lines, an annual conference for program updates and continuing education, and have access to an employer-sponsored employee assistance program.
Consistent with an opt-in provider model, only designated social work coordinators have voluntarily opted in to participate and have been specifically trained to provide normalized services incorporating routine tasks corresponding to aid-in-dying care processes. They are compensated as part of their clinical role and related professional responsibilities within this program. Conversely, all other providers, who voluntarily opt in to participate, perform clinical work without additional compensation beyond the standard clinical salary. Frequently, this is in addition to professional responsibilities and completed outside usual work hours. This structure reinforces the program’s status as an exception-based service rather than a standard end-of-life intervention.
As a result, aid-in-dying activities often fall outside of billable encounters and relative value units (RVU)–based productivity models comprised of physician work, practice expense, and professional liability [12]. Uncompensated tasks include prolonged counseling visits, documentation and statutory reporting, interdisciplinary coordination, presence during ingestion, and post-death debriefing. The absence of dedicated reimbursement mechanisms places provision of aid-in-dying in the domain of values-driven rather than normalized or incentivized professional service. While this practice model may protect clinician moral integrity, it raises ethical questions about sustainability, equity, and emotional labor. Uncompensated clinician participation may limit access due to reliance upon a small number of highly committed providers with implications for workforce burden and burnout [13].
Against this practice setting, we present the case of a young, medically complex patient whose prolonged end-of-life trajectory, during which he considered aid in dying all along the way, generated substantial moral distress among involved clinicians, offering frontline insights into the challenges and supports inherent in integrated aid-in-dying care.
This case was identified based on its educational value and for providing feedback regarding resource utilization according to CARE (CAseREports) guidelines. Clinical data were obtained retrospectively from the patient’s medical record, including relevant medical history, clinical presentation, diagnostic workup, therapeutic interventions, and outcomes. Patient identifying information was anonymized according to the Health Insurance Portability and Accountability Act (HIPAA) and approved for publication by the Southern California Permanente Medical Group Department of Compliance. Institutional review board (IRB) approval was
not required for a report describing a single clinical case. Written informed consent for publication was obtained May 23, 20026, from the next of kin.
The authors comprise a multidisciplinary team with direct clinical and programmatic experience in aid-in-dying care, palliative care, pharmacy practice, substance use disorder, and research and evaluation. The perspectives presented reflect the authors’ clinical involvement in aid-in-dying care, review of the patient’s medical record, and program-level experience within an integrated healthcare system. This report is not a qualitative study; no formal interviews were conducted. Rather, the case and accompanying analysis are intended to be descriptive and illustrative of provider experience within real-world practice. All authors contributed to conceptualization of the manuscript, interpretation of findings in relation to existing literature, drafting and critical revision of the manuscript, and approved the final version. All authors meet the International Committee of Medical Journal Editors (ICMJE) authorship criteria and are accountable for the accuracy and integrity of the work.
Lyle (a pseudonym) was a 27-year-old man and former member of our health system’s insurance plan who had relocated with his mother to a non-participating aid-in-dying state. He returned independently to the vicinity of his childhood residence in California and presented with a new testicular mass and request for an external prescription refill for oxycodone. Imaging and surgery confirmed a metastatic non-seminomatous germ cell tumor, a potentially curable cancer with a five-year survival rate of 48–92% after excision and chemotherapy. He reported that he had been told that treatment for his testicular cancer was crucial: “The doctor I saw said I could see
one to two years of life expectancy, but I was given hope today and told that this cancer responds well to treatment. It is curable.”
His medical history included multiple psychiatric diagnoses, including attention deficit/hyperactivity disorder, oppositional defiant disorder, and bipolar I disorder. He was prone to angry outbursts, threats of violence, and impulsiveness. His psychiatric history began in adolescence, with prior involuntary psychiatric hospitalization, and long-standing symptoms of anxiety and post-traumatic stress related to a prior severe burn injury. Lyle’s family included a twin brother with a similar psychiatric history and a mother with depression.
He reported daily cannabis use and episodic heavy alcohol use. He had discontinued prior psychiatric medications to which he showed some response at age 18, sharing that his faith had helped him with self-control. He had frequently declined behavioral health treatment and pharmacotherapy.
The patient was hospitalized at our institution, where early psychiatric evaluation found no acute suicidality (Columbia Suicide Scale) and intact decision-making capacity. The patient accepted chemotherapy. Following discussions about goals of care, he signed “Do Not Resuscitate/Do Not Intubate” forms, and he requested no artificial nutrition/hydration should that need arise.
Approximately one month after diagnosis and surgery, during an outpatient palliative care consultation, he inquired about aid in dying through our medical aid-in-dying program. He requested that his mother not be informed of the inquiry, although she served as his surrogate decision-maker. He was concerned about being unable to care for himself and burdening her. Although he denied barriers to health, he reported being unemployed and staying with his father, with whom he had a discordant relationship. Lyle was given an aid-in-dying evaluation and was assessed to be ineligible by not meeting the terminal illness criterion (Palliative Prognostic Score 90%, Edmonton Assessment of Symptoms Score of 29.

Within End of Life Care
Adapted from Kaiser Permanente End of Life Option Program Clinical Operations
Over subsequent months, his engagement with his cancer treatment was intermittent, with repeated starts and stops of chemotherapy and fluctuating goals of care. He expressed anxiety and procedural aversion, particularly regarding placement of peripherally inserted central catheters necessary for treatment. Following the patient’s informed decision to decline disease-directed treatment, the anticipated prognosis was shortened to six months, thereby qualifying him for hospice care. He revised his decisions multiple times during the course of care, including repeated code status changes and revocations of hospice care to resume curative treatments. After a psychiatric exam, he was newly diagnosed with borderline personality disorder, although maintaining full decision-making capacity. He declined referrals to psychiatry and behavioral health and refused psychiatric medications. Despite intermittent treatment, his oncologist determined his cancer to be in remission, while still requiring ongoing surveillance. During this period, Lyle struggled with a structured tapering opioid protocol. He reported severe persistent pain and experienced stomach indigestion and anxious feelings with tapering attempts.
Over the ensuing year, his symptom burden increased, causing an increasing complexity of pain-management needs. Continued cancer therapy offered a 30–40% chance of a durable remission. He continued to inquire about the “death-with-dignity” process. But Lyle missed outpatient visits and follow-up imaging, resulting in fragmented opioid prescribing. He cycled between the emergency room, palliative care, pain management, and hospice services.
Lyle was then admitted to hospice care, where his opioid requirements increased substantially, leading to opioid rotations and patient-controlled analgesia (PCA). He initially said that this provided sufficient comfort but then reported in a volatile manner on teleconference meetings for pain management that the “bags were defective,” when doses were not escalated to his expectation. He continued to decline available alternate and complementary therapies including adjuvant analgesics, interventional procedures, physical medicine, and therapy.
Lyle’s illness progressed, and he reengaged the medical aid-in-dying program. This time his evaluation determined that he had met both prognostic and capacity criteria, and he was admitted. Lyle said he wanted to avoid suffering and that he was angry about his cancer. He did not express a desire to die per se, saying, “The more I get to know the Lord Jesus, the more I want to live.”
He was again assessed as having decisional capacity, and he completed the required requests. Clinical concerns for high opioid exposure and large body habitus led to a prescription for the usual aid-in-dying medications but with a doubled phenobarbital component (DDMAPh: digoxin 0.1g; diazepam 1g; morphine sulfate 15g; amitriptyline 8g; phenobarbital 10g instead of 5g) [14].
Approximately 19 months after diagnosis, Lyle chose a date to self-administer the aid-in-dying medications at home. He subsequently moved up the date by three weeks upon learning that supply shortages would prevent return to his preferred opioid patient-controlled analgesia. He requested his hospice physician and nurse to be present. They arrived at 10 a.m., and the physician was surprised to discover familial relationships and a support network of which she had not previously been aware. Lyle had already taken the premedications and set up his bed with pillows and a fan.
Lyle’s mother, sister, and three friends were with him, and he talked with each of them. He told them he had gone outside and seen a beautiful sunrise.
Lyle prepared the medications by himself, then got in bed. At 10:51 a.m., he took the aid-in-dying medications. He complained about the bitter taste and soon felt a typical warm skin flush. He hugged his mother one more time and, within about ten minutes, Lyle was unconscious. By 1 p.m., his respirations were shallower, and he appeared pale with cyanotic lips. His nurse stayed after the physician left, and he died at 4:05 p.m., five hours after ingestion. Sitting at his bedside, his mother expressed appreciation for the support.
The discussion uses this case to examine how integrated aid-in-dying program structures can both support and intensify provider moral distress and to identify actionable support mechanisms for sustaining volunteer aid-in-dying workforces.
This case illustrates how moral distress can accumulate when clinical uncertainty persists across a prolonged, highly complex trajectory. Rather than arising from a single ethically fraught encounter, distress emerged cumulatively as the care team navigated repeated transitions, fragmented responsibility across settings, and evolving goals of care in the context of a young patient with psychiatric comorbidity and difficult-to-interpret suffering. We trace how case-based uncertainty contributed to cumulative moral distress and then identify targeted implications for supporting clinicians participating in aid-in-dying care.
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Lyle’s young age placed him outside the demographic norm for aid-in-dying utilization in California, and emerging literature suggests that psychiatric diagnoses may be more prominent among some younger individuals requesting assisted dying [15]. In this case, he raised aid in dying at multiple timepoints—when ineligible early after diagnosis, again during subsequent care disruption, and later when eligibility criteria were met—highlighting how the meaning and function of a request can shift over time. Early on, the request appeared to identify fear of future suffering and loss of control; later, as symptom burden and functional decline progressed in a fluctuating trajectory, the request became a sustained, procedurally engaged plan. This evolution contributed to ongoing uncertainty for clinicians about when drivers of suffering had been sufficiently assessed and addressed and when the request reflected enduring preferences under changing circumstances.
For the prescribing clinician, the patient’s early inquiry elicited a strong emotional response while also underscoring limits on relational continuity and contextual knowledge. In the record and encounters, he prioritized control and set firm boundaries (including initially requesting that his mother not be informed), and he intermittently declined behavioral health engagement and multimodal symptom strategies. These patterns constrained opportunities to develop shared understanding of suffering and goals, leaving persistent uncertainty about ethically salient contextual factors—particularly the stability of his preferences over time, how trauma and psychiatric comorbidity shaped his experience of “total pain,” and the extent of support available outside clinical settings. In this case, that unresolved uncertainty—more than clear disagreement with the medical aid-in-dying framework—was a key source of accumulating moral distress.
As symptom burden escalated, care became increasingly fragmented across oncology, emergency care, pain services, palliative care, and hospice, amplifying uncertainty about both responsibility and the adequacy of available interventions. Although decisional capacity was repeatedly affirmed, clinicians faced recurring tension between supporting autonomy and questioning whether remaining, potentially addressable contributors to suffering were being sufficiently assessed and addressed in real time [16, 17]. In this case, missed visits, shifting thresholds for proceeding with aid-in-dying, and repeated reversals in goals of care compounded this uncertainty, making it difficult for the prescribing clinician to feel ethically confident that continued engagement was aligned with professional commitments to relieve suffering, avoid harm, and provide continuity. Over time, this unresolved uncertainty accumulated into longitudinal moral distress.
Pain and opioid management were central—and in this case, destabilizing—sources of clinical uncertainty. During remission and surveillance, persistently high opioid requirements complicated interpretation of suffering (treatment-related pain vs chronic pain syndromes vs affective/trauma-associated distress) while also raising concern for opioid-related harms in the setting of psychiatric comorbidity, prolonged exposure, and fragmented prescribing. When the patient later entered hospice, rapid dose escalation and conflict around expectations for patient-controlled analgesia dosing further heightened uncertainty about how best to balance immediate comfort with safety considerations, particularly given limited evidence to guide risk mitigation in end-of-life contexts [18]. Importantly, these uncertainties were not merely technical; they carried moral weight because the clinician could not fully resolve whether and how potentially modifiable contributors to suffering were influencing the perceived urgency and timing of the aid-in-dying request.
This case demonstrates how decisional capacity and vulnerability can coexist and how unresolved clinical uncertainty—rather than a single discrete ethical dilemma—can generate cumulative moral distress over time. One targeted implication is clinical: reliable access to psychiatric and substance-use expertise within palliative and hospice settings may help clinicians more confidently interpret suffering and preference stability when psychiatric comorbidity and high opioid exposure are prominent, without treating such comorbidity as automatically disqualifying for aid-in-dying [19-20]. A second implication is programmatic: in opt-in models that rely on volunteer clinicians, leadership-backed protected time, clear role delineation (including expectations around attendance at ingestion), and routine opportunities for interdisciplinary consultation and post-event debriefing can reduce isolated responsibility and support sustainable, high-quality aid-in-dying practice.

Aid-in-dying providers self-select into this work within a framework characterized by voluntariness and opt-in participation—concepts that are related but not synonymous. Even within a well-developed, integrated medical-aid-in-dying program that supports patient autonomy and regulatory fidelity, this case illustrates how sustainability gaps remain and how the emotional and ethical demands of aid-in-dying care may be under-recognized. Moral distress in this context was longitudinal and cumulative, arising from prolonged involvement in a single high-complexity case marked by evolving goals of care, incomplete relational knowledge, and structural constraints on care delivery.
This experience underscores the need to recognize aid-in-dying participation as specialized clinical labor rather than solely values-driven service. System-level strategies—including leadership-backed protected time and resources, administrative infrastructure, interdisciplinary consultation, and structured opportunities for peer support and debriefing—may help mitigate cumulative moral distress and support workforce sustainability. Attending to the well-being of aid-in-dying providers is essential not only for clinician retention but also for maintaining equitable patient access and the ethical foundation of voluntariness that underpins aid-in-dying care.
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Acknowledgments, Conflict of Interest, and Disclaimer
Acknowledgments: We thank Stella Zazula, LCSW and Michael Birmingham, PharmD for review and the Kaiser Southern California End of Life Option Program for support. The authors would like to thank the family of “Lyle” and all Kaiser Permanente members for their partnership. Their information collected through our electronic health record systems leads to findings that help us improve care for our patients and can be shared with the larger community.
Conflict of Interest: The author(s) have no conflicts of interest to disclose. Information in this manuscript was presented in part at the Kaiser Permanente Southern California End of Option Regional Conference October 2024 and has not been published elsewhere.
Disclaimer: All views expressed by the authors are solely their opinions and do not reflect the opinions of the Southern California Permanente Medical Group (SCPMG) or Kaiser Permanente. SCPMG has not reviewed this submission and makes no representation regarding its accuracy or completeness. To protect privacy and ensure confidentiality, the name of the patient and identifying details such as exact dates, precise geographic locations, and unique demographic markers have been altered.