Bioethics Forum Essay
He Said, “I Want to Live.” But He Refused Care
Mr. Young, in his late 60s, was admitted to a hospital in New York City with complications from untreated advanced cancer. He also had a diagnosis of paranoid schizophrenia and lived in a supportive housing facility for people with psychiatric illnesses.
The primary care team ordered a series of tests, including a CT scan to enable them to stage his cancer and develop a treatment plan. Mr. Young agreed, stating “I want to live,” but when it came time for the scan, he declined. When this pattern continued a psychiatrist evaluated Mr. Young and determined that he lacked capacity to refuse the workup. Because he had no known surrogate decision-maker or next of kin, he was classified as an unrepresented patient and unable to make his own medical decisions. As clinical ethicists we were consulted to assist in navigating decisions about his care.
Ethics Analysis and Process
We met with the primary care team—an attending physician and a resident—and began by clarifying the team’s core question: Was it ethically permissible to pursue diagnostic imaging over Mr. Young’s objection? Our role was to ensure that the process didn’t stop at his refusal but instead considered his prognosis, the likely impact of the scan, and what his behavior and history suggested about his values. The primary care team said that regardless of his cancer’s staging, his condition was probably terminal. Therefore, we thought it was unlikely that treatment over his objection could be justified. But to definitively answer their question, we wanted to talk to Mr. Young.
With the team, we asked Mr. Young about his personal history and medical preferences. Mr. Young, a frail-looking Black man, shared that he grew up in the South, had been a preacher when he was younger, and had medical trauma from involuntary psychiatric hospitalizations. When we asked him why he refused the CT scan, he said, “Sometimes I am just uncomfortable doing these things.” He was affable and friendly throughout our conversation but became visibly distressed when discussing medical procedures.
We identified several ethical concerns relevant to his care. His refusal did not appear to reflect a deeply held opposition to treatment but rather discomfort and distrust in the healthcare system. We reasoned that forcing treatment over his objection would likely be traumatizing given his history of involuntary hospitalizations. Given all of this, and that the scan was unlikely to provide much benefit, we agreed that treating him over his objection could not be justified. We recommended building trust with Mr. Young, providing emotional and psychological support to see if he would change his mind about the scan. He changed his mind after the team went above and beyond to build rapport with him.
The scan confirmed that Mr. Young’s cancer was terminal. The team had to consider a number of end-of-life issues for Mr. Young, including questions regarding his “code status” (including his wishes to be resuscitated if his heart stopped) and his discharge from the hospital, which would likely include the option of hospice enrollment.
But there was a complication. Mr. Young had a Medical Order for Life-Sustaining Treatment (MOLST) form, completed at his supportive housing facility prior to his admission to the hospital, which requested resuscitation and life-sustaining treatment. (MOLST forms are not universally considered advance directives and they require review every 90 days. Yet, there was no indication that this had been done for Mr. Young.) The team felt stuck because decision-making for outpatient discharge requires engagement the patient could not provide.
We convened a meeting with the primary care, palliative care, and oncology teams. We reasoned that there was justification for the doctors to make decisions for Mr. Young. For one thing, Mr. Young had said to the doctors at one point, in response to a treatment option presented to him, “You doctors can make the decisions.” In addition, a provision in New York State law allows an alternative decision-making process for unrepresented patients. The doctors agreed that hospice was in the patient’s best interest.
In New York State, hospice enrollment for unrepresented patients like Mr. Young requires a recommendation from the treating provider, agreement from a second practitioner not involved in his care, and review by an ethics review committee, a multidisciplinary group consisting of five members of the hospital’s bioethics community. While we arranged for the ethics review, Mr. Young’s condition rapidly declined, raising concerns about imminent cardiac arrest. If that happened, should he be resuscitated—following his wish stated in his MOLST? And, if he survived, should he be enrolled in hospice?
The primary care team presented the ethics review committee with a proposal to enroll Mr. Young in hospice and change his code status to do-not-resuscitate. The committee had an obligation to determine how much weight to attribute to his MOLST and to make a decision that best honored his wishes. While the ethics review committee leaned toward enrolling him in hospice and entering a DNR order on his behalf, they felt a profound responsibility to ensure their decision was truly aligned with the patient’s values. The committee directed the ethics service to gather additional information that could further clarify his intent.
We spoke with Mr. Young’s primary care provider, a nurse practitioner at his supportive housing facility who knew him well and was with him when he completed his MOLST. She explained that, due to his history of medical trauma from repeated involuntary psychiatric hospitalizations, he deeply feared that the hospital would abuse and kill him. For Mr. Young, the MOLST form was not just a medical directive but a safeguard, a way of ensuring that he would not be dismissed or mistreated, and that his dignity would be recognized and respected.
The Decision
We determined that Mr. Young’s wishes expressed in the MOLST had been fulfilled. He had received thoughtful and respectful care. The ethics review committee unanimously agreed that now that Mr. Young was dying, allowing him to suffer unnecessarily would feel more like abandonment than care. Continuing full interventions would not only fail to prolong his life but would risk prolonging his suffering. The committee concluded that it was appropriate for the primary care team to change Mr. Young’s code status to DNR. He was discharged from the hospital to a hospice facility, where he could receive comfort-focused care in his final days.
Lingering questions
Mr. Young’s case was exceptional in several ways. He received unusually attentive care in the hospital and had a strong outpatient support system, including an engaged primary care provider who gave critical insight into his values. Many unrepresented patients do not benefit from this level of advocacy and emotional support. Additionally, Mr. Young’s affable demeanor may have contributed to the team’s willingness to spend extra time with him—patients perceived as “difficult” might receive less consideration.
His case also highlights critical social justice concerns. Black patients and individuals with schizophrenia frequently face bias from clinicians and have historically been subjected to coercive treatment, including involuntary hospitalization and forced medical interventions. The legacy of these injustices continues to shape their healthcare experiences, as many report low levels of trust and an ongoing experience of violation in the medical system. This mistrust often leads marginalized patients to approach medical institutions with skepticism and fear. Mr. Young’s discomfort with medical procedures can be interpreted against this broader history of justified mistrust in medicine.
The structural vulnerabilities of unrepresented patients warrant further examination. It is well documented that unrepresented patients are historically undertreated, often lacking an advocate to ensure their preferences are considered. How do we ensure that ethical deliberation remains rigorous and does not default to efficiency-driven or risk-averse institutional norms? New York State’s alternative decision-making process for unrepresented patients grants significant discretion to clinicians and ethics committees, which, while flexible, risks inconsistent application across institutions. How do we safeguard against systemic disparities, particularly for patients from historically marginalized groups?
Our decision to bypass Mr. Young’s MOLST raises important ethical tensions. Mr. Young’s statements that he would prefer the doctors to make all decisions for him may not have reflected disengagement but rather an attempt to defer sole authority over an extremely distressing decision. Shared decision-making offers a way to interpret his response as an intentional, if indirect, expression of his end-of-life wishes. If we understand his approach in this way, was his MOLST form truly bypassed, or was it integrated into a different model of decision-making that better reflected his needs? How do we navigate the line between honoring documented directives and recognizing when patients, even those with limited capacity, may be engaging in shared decision-making in a way that challenges rigid procedural interpretations?
We are also aware of the risk that our decision was paternalistic. Some patients view aggressive resuscitation as central to their dignity, believing that every attempt should be made to preserve life. In contrast, our ethical reasoning prioritized his broader concerns about receiving thoughtful and respectful care, and we concluded that maintaining full code status would lead to unnecessary suffering. But was this really an apt interpretation of his wishes? Or was it only a judgment we made about his clinical best interest? Were we justified in overriding an explicit directive based on collateral information? This dilemma underscores a deeper issue: How to find the balance between honoring documented preferences and interpreting those preferences in light of contextual and relational factors? For unrepresented patients, whose voices are already structurally diminished, should their documented decisions carry more weight?
Ultimately, Mr. Young’s case invites us to consider how race, psychiatric history, and institutional bias can shape the care trajectories of unrepresented individuals and to critically examine whether clinical ethics processes, even when applied with great care, adequately account for these broader social determinants of health.
Ryan Marshall Felder, PhD, HEC-C is assistant staff bioethicist at the Cleveland Clinic’s Center for Bioethics.
Adira Hulkower, JD, MS, HEC-C, is the director of the bioethics consultation service at Montefiore Medical Center, as well as the associate director of the Montefiore Einstein Cetner for Bioethics. She is also an assistant professor of epidemiology and population health at the Albert Einstein College of Medicine.
Series Editors’ Comment: Addressing Discomfort and Distrust
When the ethics consultants meet with Mr. Young, they learn of his personal history including medical trauma and forced hospitalizations, and they observe palpable distress when he discusses medical procedures. Mr. Young’s stated wish that he “wants to live” is important when considering his goals. But with complications from advanced untreatedcancer, the clinical realities and treatment options become key to the ethical aspects of medical decisions, including considerations of treatment over objection and end-of-life care. The ethics consultation about a referral to hospice and the interpretation of the patient’s MOLST form raises new issues. The discomfort of the clinicians and ethicists in overriding the MOLST is noteworthy.
We had some questions about the MOLST. How did Mr. Young come to complete it and why? Was it completed after a substantive conversation or was it required for admission to his supportive housing facility? Did Mr. Young’s decision in the MOLST to be full code reflect his enduring values, and if so which ones? His experiences with involuntary hospitalizations and forced treatment are also important. How do clinical ethicists parse this information? We commend the ethics consult service for reaching out to a caregiver who knew Mr. Young in a different setting and was with him when he completed the MOLST. We also wonder how this case would have unfolded if there was no one who had a relationship with Mr. Young and the team was left with a duly executed MOLST but without the additional information.
There is much to learn and ponder after reading this case. It notably highlights the role that ethics consultation services can play in addressing the discomfort of patients and of clinical teams and in exploring “mixed” messages as the clinical facts change and collateral information is gathered. These actions alone cannot adequately address social determinants of health, but when Mr. Young was nearing the end of life, his situation was carefully discussed, and he was treated with respect.
— Debjani Mukherjee and Thomas Cunningham
