Responding to Cultural Limitations on Patient Autonomy: A Clinical Ethics Case Study.

This paper is a clinical ethics case study which sheds light on several important dilemmas which arise in providing care to patients from cultures with non-individualistic conceptions of autonomy. Medical professionals face a difficult challenge in determining how to respond when families of patients ask that patients not be informed of bad medical news. These requests are often made for cultural reasons, by families seeking to protect patients. In these cases, the right that patients have to their own medical information in order to make autonomous decisions is in tension with the possibility that patients could hold values that require limiting their autonomy with regard to medical information disclosure, often based on the idea that family should take on difficult decision-making as an act of care. We describe one such case, of an 83-year old Russian woman whose husband requested she not be informed of a new cancer diagnosis. The appropriate response to this request was to ask the patient about her values separately, without disclosing any medical information until her values were clear. This patient indicated she wanted the care team to uphold her husband's request. This response makes the importance of determining a patient's values before moving forward with disclosure clear: she would not have wanted to be informed of her cancer. We describe our conversation strategy, which allowed value exploration without disclosure and highlighted that the obligation to respect a patient's autonomy sometimes includes an obligation to allow a patient to choose to limit their own autonomy. This case also highlights that this kind of conversation prioritizes the patient's values rather than the family's or care team's, centering patients in the way that is ethically appropriate.

Barriers to Patient Involvement in Decision-Making in Advanced Cancer Care: Culture as an Amplifier.

In advanced cancer care, patient preferences regarding treatment are sometimes insufficiently integrated in the decision-making process. This can be the case with patients from non-Western cultural backgrounds undergoing treatment in the US. This study aimed to understand oncology and palliative care physicians' and nurses' perceptions of factors that impact involvement in treatment decisions by patients from diverse cultural backgrounds. Seventeen participants (6 MDs, 9 RNs, and 2 NPs) were interviewed using a semi-structured guide. Interviews were analyzed using conventional content analysis. Findings revealed six barriers to patient involvement in decision-making: language, socio-economic status, educational status, gender, family attitudes, and healthcare providers' behavior and attitudes. Participants did not view culture itself as a barrier to patient involvement, but rather, noted culture-amplified barriers that occurred with patients across all cultural backgrounds. To overcome these barriers, a wider integration of cultural competence in patient care is needed.

Palliative Sedation, Compassionate Extubation, and the Principle of Double Effect: An Ethical Analysis.

Palliative sedation is a well-recognized and commonly used medical practice at the end of life for patients who are experiencing refractory symptoms that cannot be controlled by other means of medical management. Given concerns about potentially hastening death by suppressing patients' respiratory drive, traditionally this medical practice has been considered ethically justifiable via application of the ethical doctrine known as the Principle of Double Effect. And even though most recent evidence suggests that palliative sedation is a safe and effective practice that does not hasten death when the sedative medications are properly titrated, the Principle of Double Effect is still commonly utilized to justify the practice of palliative sedation and any risk-however small-it may entail of hastening the death of patients. One less common clinical scenario where the Principle of Double Effect may still be appropriate ethical justification for palliative sedation is when the practice of palliative sedation is pursued concurrently with the active withdrawal of life-sustaining treatment-particularly the practice of compassionate extubation. This case study then describes an unconventional case of palliative sedation with concurrent compassionate extubation where Principle of Double Effect reasoning was effectively employed to ethically justify continuing to palliatively sedate a patient during compassionate extubation.