An Uṣūlī Islamic Approach to Medical Futility
Hani Rustom, University of Illinois at Chicago and Darul Qasim College, Chicago, IL; Abid Haseeb, Nazareth Hospital, Philadelphia, PA and Darul Qasim College, Chicago, IL; Omar Hussain, Loyola University Chicago Stritch School of Medicine and Darul Qasim College, Chicago, IL; Mashfiq Hasan, University of Rochester Medical Center, Rochester, NY and Darul Qasim College, Chicago, IL; and Shaykh Mohammed A. Kholwadia, Darul Qasim College, Chicago, IL
Key Words: Shifa, Wilayah, Mukallaf, Usuli, Maqasid, Wali, Islamic Ethics, Medical Futility, Islamic Bioethics
Introduction: An Uṣūlī (principled) approach to Islamic bioethics employs several precepts that can be used to clarify medico-ethical dilemmas. Here, we report on an infant with a lethal congenital syndrome whose Muslim parents were faced with difficult questions about their child’s care.
On behalf of the parents, a member of the infant’s clinical care team requested an Ethics consultation from Darul Qasim College. The question centered on the potential sin of removing invasive mechanical ventilation and the possible virtue and reward in the hereafter of continuing artificial life support and full resuscitative efforts.
Case Description: Baby R had a congenital syndrome that typically causes death within one year of life. It is known to cause poor functioning of the brain, the liver, and the kidneys. No curative treatments are available for this syndrome.
Due to the aforementioned problems, Baby R was hospitalized for over 7 of their 9 months of life. The infant was critically ill during most of their life, requiring invasive mechanical ventilation via an endotracheal tube, enteral nutrition through an artificial feeding tube, and centrally placed venous catheters for repeated courses of antibiotics and other medicines. Baby R had multiple bouts of infections since birth and suffered from multiple bouts of cardiac arrest. The care team resorted to placing a catheter in the bone (intraosseous catheter, or IO catheter) to deliver medications needed to address low blood pressure.
On multiple occasions, blood pressure was too unstable for Baby R’s gastrointestinal system to function properly, and the infant relied on parenteral nutrition through the aforementioned central lines. If invasive mechanical ventilation was removed, physicians did not expect the infant to survive longer than a day.
Quality of life was extremely poor, and Baby R was likely experiencing pain due to the ongoing interventions mentioned above. Due to the congenital syndrome and chronic critical illness, there was no reasonable hope for meaningful neurological improvement or recovery.
Discussion: The Arabic terms Shifa (comprehensive healing), Wilayah (authority), Mukallaf (accountable person), and uṣūlī (ethico-legal method that is principles-based, e.g.“certainty cannot be overruled by doubt”) are Islamic precepts and maxims that are used by jurisconsults and medical practitioners to help patients navigate difficult decisions in healthcare. While one set of medical decisions may seem “right” to the clinical team, the same decisions may bring discomfort to patients and families. From this dyssynchrony, goals of care discussion guided by Muslim scholars can achieve coherence between clinicians and patients and can yield generalizable bioethical guidelines. In parallel, the scholars may uncover more knowledge. Specifically, Islamic scholars demonstrated that an uṣūlī (principled) approach can answer ethical questions without resorting to a maqasidi (utilitarian) approach.
This quest for more knowledge reverberates between the scholar, the patient, and the clinician. While the planes of understanding may differ between these three groups, the uncovered knowledge creates the space for great coherence to exist.
Baby R’s parents were informed that, from an Islamic bioethical perspective, it was not mandatory to prolong or save the infant’s life at every cost. Utilizing the maxim that “certainty is preferred over uncertainty,” only reasonable attempts were deemed obligatory. Parents were advised to rely upon Baby R’s physicians’ opinions regarding prognosis and medical futility as part of their decision-making process.
Administering medicine is not always necessary if the outcome is subjective and speculative (i.e., the benefit of the intervention is ambiguous). Indeed, a patient has the prerogative to refuse medication in such circumstances.
Since Baby R was not mukallaf (accountable) to make any decisions, wilayah (authority and agency) went to Baby R's Wali (guardian), who was the father. In this case, he had the authority to decide to stop ongoing aggressive medical care since conclusive benefit was unlikely. There was no sin in discontinuing any and all forms of medicine or treatment. When safe, nourishment must be provided. There was no sin on the Wali to stop medication, and he could do so without any guilt.
Conclusion: In the case of Baby R, the clinical team concluded that continued aggressive care was futile. Through the methodology outlined above, Baby R’s parents concluded that stopping aggressive care was neither unIslamic nor sinful. Re-presenting tools within the framework of Islamic jurisprudence brought healing in different ways: to Baby R, Baby R’s parents, and Baby R’s clinical care team.
Moreover, Islamic bioethical guidelines can be useful for all providers who navigate medical futility.
Introduction: An Uṣūlī (principled) approach to Islamic bioethics employs several precepts that can be used to clarify medico-ethical dilemmas. Here, we report on an infant with a lethal congenital syndrome whose Muslim parents were faced with difficult questions about their child’s care.
On behalf of the parents, a member of the infant’s clinical care team requested an Ethics consultation from Darul Qasim College. The question centered on the potential sin of removing invasive mechanical ventilation and the possible virtue and reward in the hereafter of continuing artificial life support and full resuscitative efforts.
Case Description: Baby R had a congenital syndrome that typically causes death within one year of life. It is known to cause poor functioning of the brain, the liver, and the kidneys. No curative treatments are available for this syndrome.
Due to the aforementioned problems, Baby R was hospitalized for over 7 of their 9 months of life. The infant was critically ill during most of their life, requiring invasive mechanical ventilation via an endotracheal tube, enteral nutrition through an artificial feeding tube, and centrally placed venous catheters for repeated courses of antibiotics and other medicines. Baby R had multiple bouts of infections since birth and suffered from multiple bouts of cardiac arrest. The care team resorted to placing a catheter in the bone (intraosseous catheter, or IO catheter) to deliver medications needed to address low blood pressure.
On multiple occasions, blood pressure was too unstable for Baby R’s gastrointestinal system to function properly, and the infant relied on parenteral nutrition through the aforementioned central lines. If invasive mechanical ventilation was removed, physicians did not expect the infant to survive longer than a day.
Quality of life was extremely poor, and Baby R was likely experiencing pain due to the ongoing interventions mentioned above. Due to the congenital syndrome and chronic critical illness, there was no reasonable hope for meaningful neurological improvement or recovery.
Discussion: The Arabic terms Shifa (comprehensive healing), Wilayah (authority), Mukallaf (accountable person), and uṣūlī (ethico-legal method that is principles-based, e.g.“certainty cannot be overruled by doubt”) are Islamic precepts and maxims that are used by jurisconsults and medical practitioners to help patients navigate difficult decisions in healthcare. While one set of medical decisions may seem “right” to the clinical team, the same decisions may bring discomfort to patients and families. From this dyssynchrony, goals of care discussion guided by Muslim scholars can achieve coherence between clinicians and patients and can yield generalizable bioethical guidelines. In parallel, the scholars may uncover more knowledge. Specifically, Islamic scholars demonstrated that an uṣūlī (principled) approach can answer ethical questions without resorting to a maqasidi (utilitarian) approach.
This quest for more knowledge reverberates between the scholar, the patient, and the clinician. While the planes of understanding may differ between these three groups, the uncovered knowledge creates the space for great coherence to exist.
Baby R’s parents were informed that, from an Islamic bioethical perspective, it was not mandatory to prolong or save the infant’s life at every cost. Utilizing the maxim that “certainty is preferred over uncertainty,” only reasonable attempts were deemed obligatory. Parents were advised to rely upon Baby R’s physicians’ opinions regarding prognosis and medical futility as part of their decision-making process.
Administering medicine is not always necessary if the outcome is subjective and speculative (i.e., the benefit of the intervention is ambiguous). Indeed, a patient has the prerogative to refuse medication in such circumstances.
Since Baby R was not mukallaf (accountable) to make any decisions, wilayah (authority and agency) went to Baby R's Wali (guardian), who was the father. In this case, he had the authority to decide to stop ongoing aggressive medical care since conclusive benefit was unlikely. There was no sin in discontinuing any and all forms of medicine or treatment. When safe, nourishment must be provided. There was no sin on the Wali to stop medication, and he could do so without any guilt.
Conclusion: In the case of Baby R, the clinical team concluded that continued aggressive care was futile. Through the methodology outlined above, Baby R’s parents concluded that stopping aggressive care was neither unIslamic nor sinful. Re-presenting tools within the framework of Islamic jurisprudence brought healing in different ways: to Baby R, Baby R’s parents, and Baby R’s clinical care team.
Moreover, Islamic bioethical guidelines can be useful for all providers who navigate medical futility.