Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case, and then we seek an expert ruling.
Last week, you voted on whether or not to tell a dead patient's sister that he had AIDS. Here are the results:
Yes: 46%
No: 54%
And now, bioethicist Jacob M. Appel, MD, JD, weighs in with an excerpt from his book, :
Physicians have long recognized that the ethical duty to preserve confidentiality should continue, at least to some degree, beyond the grave. Otherwise, many patients -- especially those in the latter stages of life -- might withhold critical, even life-prolonging information from their doctors. This principle is legally codified in the Health Insurance Portability and Accountability Act of 1996 (HIPAA), which initially ensured such confidentiality in perpetuity but has since been amended to shield patients' healthcare information for fifty years. Many state laws also protect posthumous medical confidentiality.
However, one must distinguish between "confidentiality" and "privacy." While privacy rights entail the ability to keep information from everyone -- such as material printed in a diary or shared with a priest -- confidentiality protections permit disclosure to individuals who have a legitimate stake in accessing such information, including other physicians involved in the patient's care, healthcare insurers, and certain government agencies. In most jurisdictions, a patient's surviving agent -- either his next of kin or his healthcare executor -- generally acquires control of the patient's medical record. That control affords this agent the right to access the patient's healthcare information and to share it with others.
Allowing patients to keep medical information from survivors may help maximize their autonomy and sense of empowerment. Some critics might argue that Monty, the deceased patient, could have taken legal steps to prevent his sister from accessing his medical record entirely, such as appointing a third party to serve as his healthcare executor and then instructing that individual in writing not to share this information with Crystal. In many states, those actions would be both legally possible and binding.
But requiring such drastic action may demand too much foresight from the average patient. More concerning, asking Monty to shut out Crystal entirely could undermine his ultimate goal -- to protect her from unnecessary distress. The American Medical Association's Council on Ethical and Judicial Affairs urges doctors, to the extent possible, to preserve the same degree of confidentiality for patients in death as they have requested in life.
Of course, the logistics of concealing information from a determined relative may prove difficult. Would one remove Monty's medication list from the chart? Redact the name of the often AIDS-related bacteria that caused his pneumonia? Refusing Crystal access to the medical chart entirely would likely not be legal; even if it were legal, doing so might merely serve to provoke her worst suspicions, which certainly would not have been Monty's intent. Alternatively, Crystal might mistakenly conclude that her brother was healthy at baseline and thus died of substandard care -- leading to a groundless malpractice suit.
An even more challenging situation arises when the patient is critically ill but not yet deceased. In these cases, a family member -- serving as a healthcare proxy or surrogate -- often must render medical decisions on his behalf. Yet a decision-maker needs accurate and comprehensive information about a patient's medical condition in order to generate informed choices. Under such conditions, when the patient's wishes regarding confidentiality directly conflict with his physical welfare, physicians may prove far less willing to withhold information, especially if the result is a surrogate or proxy making a poorly informed and dangerous decision.
Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at the Icahn School of Medicine at Mount Sinai. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College.
Check out some of our past Ethics Consult cases: