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Does patient confidentiality end with death? Depends on definition of person
Ethicists present differing views on sharing information after death
One of your patients dies as the result of an AIDS-related infection. During the time he was under your care, he made it clear that he did not want his parents to know that he was HIV-positive or suffering from AIDS.
At the hospital following his death, his parents approach you and ask for details about their son's illness. Has your obligation to maintain patient confidentiality ended now that the patient has died?
The answer depends on the physician's interpretation of who the obligation is to: Is it the living, physical patient? The patient's identity and "personhood" that remains after his death? The spirit of the patient's intent?
Patient confidentiality, and the trust that it engenders in the physician-patient relationship, has been a cornerstone of medicine for centuries. The American Medical Association's (AMA) Code of Medical Ethics1 states that information disclosed during the course of the physician-patient relationship is confidential to the utmost degree in life, and after death.
"At their strongest, confidentiality protections after death would be equal to those in force during a patient's life," the AMA code states. Disclosure of information after death is ethically permissible under some circumstances, according to AMA guidelines, particularly if there is imminent harm or potential risk to living individuals or the public health.
Factors the AMA urges consideration of include: the impact the disclosure may have on the reputation of the deceased, and any specific directives the patient may have made before death regarding disclosure after he or she died.
But ethicists say the question is much more complicated, and involves the belief and value systems of both physicians and their patients.
Confidentiality precedes birth, outlasts death
"Patient confidentiality can start, indeed, before the patient is ever born," according to Bryan Liang, MD, PhD, JD, executive director and professor at the Institute of Health Law Studies, California Western School of Law in San Diego. "Information on gender, genetics, and other conditions and aspects of his or her medical and social conditions are ethically subject to the same principles and protections as those of a born person."
Therefore, Liang asserts, it's the health care provider's duty to maintain confidentiality of children before and after their birth, just as the provider would an adult.
"Beyond this, of course, there is an ongoing duty of the medical professional to keep relevant social and medical information about a patient confidential on both ethical grounds and legal grounds," he continues.
Ethically, confidentiality is paramount to establishing the trust necessary for a patient to provide full, relevant information so that the provider can meet the patient's health care needs.
"It should be emphasized that the information should be used only in the spirit it is given — for the purposes of assisting the patient in reaching his or her health care goals, which includes diagnosis, assessment and discussion of alternatives, and treatments," says Liang. "Only in very prescribed circumstances is this confidentiality permitted to be broken either ethically or legally — usually when the patient puts his or her condition at issue, such as a patient injury lawsuit [a 'waiver' situation]; in significant public policy circumstances such as a court order [a 'public duty' situation]; or in assisting an investigation of a crime or prevention of harm to an identifiable individual [a 'public welfare' situation]."
Statutorily created exceptions to confidentiality, including those under the Health Insurance Portability and Accountability Act (HIPAA), should be assessed on their facts and justified both ethically and legally before confidentiality is breached, he adds.
Liang believes that not only does confidentiality begin before birth, it lasts beyond death — and that includes the death of the physician.
"The concept of continuing confidentiality past the patient's death is both an established ethical precept, as well as imbued in law," he explains. "The trust conception and manifestation must include these beginning- and end-of-life circumstances to ensure that we, as providers, are seen as fulfilling our duty of confidentiality and will not break that duty in the event the patient is not there to object, and that each generation of patients sees that there is an inviolable rule of keeping the words spoken and information passed between provider and patient as solely between those parties."
'Death changes things'
Sara Rosenthal, PhD, director of the University of Kentucky College of Medicine Program for Bioethics and Patients' Rights and co-chair of the university hospital ethics committee, thinks the idea of confidentiality is to protect "personhood," and that after death, there no longer exists that living person whose confidences the physician protected.
"Death changes things, and you're no longer talking about a living person," Rosenthal suggests. "The point of confidentiality is to protect the person in a practical sense — for example, to protect information from employers who could use that information to socially or professionally stigmatize [the patient], or for example, when they are dealing with something like AIDS."
Rosenthal, who says she has not done a thorough literature search on the subject, says she believes the question of whether — and what — to disclose after a person's death would depend on the situation.
"If confidentiality is there to protect people who are alive from having their privacy and private information disclosed, and if, when someone dies, they cease to be a person, I think the question about what information may be disclosed then comes down to the situation," she explains. "I would say those questions are individualized. What do [the people asking for information] want to know, specifically, and what will they do with the information?
"Would it reduce the suffering of certain family members? Or would they use the information for some sort of financial or other agenda, or is their need something real and practical, such as a question about insurance?"
In cases where a physician's duty to warn of imminent harm or potential threat comes into play, HIPAA and state laws offer protection, and in those cases, it would be unethical not to divulge information, Rosenthal says.
In the case of a surviving spouse whose husband died of complications following minor surgery, a physician disclosed that the husband had been told that the risk of potentially fatal complications was high. However, the husband had not shared that information with his wife before the surgery. In that case, Rosenthal suggests disclosing the information was appropriate because it might relieve concerns the wife had about her husband's death following what she had assumed was a low-risk surgery.
"In that case, while it probably says a lot about the husband and wife's relationship in that he didn't confide in her, the physician might have felt an ethical obligation to relieve the questions in the spouse's mind," she says.
Rosenthal offers an anecdote about a case in which a patient was clear in his demand that information be withheld, but physicians felt that while the case did not rise to the legal duty to warn standard, it was ethical to breach confidentiality after his death.
"There was a patient with a genetically inherited cancer. The nature of the inheritance was that it functioned like Huntington's disease — if you have the mutation, you are guaranteed to develop the cancer," she recounts. "This patient was not a very nice man, and he had lots of adult children by several wives, so there was lots of potential for people to be at risk of having this mutation for this incurable, aggressive cancer.
"His doctor said, 'You need to get your children tested,' and the patient said, 'Let them die.' Ultimately, the patient was found dead in a hotel room, and upon his death, the physician located all the man's children, explained the situation, disclosed to them that their father had this cancer, and they all got tested.
"This was, they felt, a duty to warn situation. They tried to get permission; he said explicitly not to contact them — but the physicians did anyway because they felt their ethical obligation overrode that patient's reasons for demanding confidentiality."
Confidentiality equals respect
To get to the core of the ethical question about if and when patient confidentiality ends, you must first separate out the idea of "protection," a legalistic term, from the true root of confidentiality, which is respect, according to Stuart G. Finder, PhD, director of the Center for Healthcare Ethics at Cedars-Sinai Medical Center in Los Angeles.
"When you talk about confidentiality, you are really talking about respect, about showing some sort of deference to that person and respecting that person," says Finder. "When someone is alive and asking you to hold a confidence, the idea is to subjugate your concerns and interests to them and their wishes.
"But when they're dead, how do you respect someone who no longer 'is'?"
To answer that question, Finder says the health care professional has to look deep within his or her own understanding of what constitutes a person.
"Part of what we bump up against is how we understand who that 'other' is. In the case of a living patient, the brute fact of the physical body stands out — and, of course, medicine is very attentive to that body, maybe even primarily focused on it — even though who one is, in terms of how lives are actually lived and experienced, is probably much better thought about in terms of a complexity of relational and inter-relational dynamics.
"So who you are goes beyond your body. And what's really quite interesting is that those relational dynamics associated with you or me go on [after death]," says Finder. "So even after my parents die, I am still their son and they are still my parents. I will always be my children's father, even after I die and after they die."
Finder says that to disclose confidential information after the death of a patient risks altering a relationship dynamic that the patient may have spent a lifetime constructing.
In considering the ethics of breaching confidences after death, Finder urges providers to look not just at the situation, but the context in which the information was learned.
"So in some cases, even if a wife wants to know information, the physician has to make a decision and review whether divulging that information would be to go against the spirit of how that information was given or who the person was, and base the decision very similarly, if not the same, as if the person were still alive," he adds.
Talk with patients before they die
Finder says if a patient tells his physician that he wants his condition or treatment decisions kept private, that's an invitation to the physician to talk about confidentiality.
"There are clearly situations that patients don't want their families to know about, and they've made decisions based on [their relatives not knowing]. So that's a clear invitation, I think, for the physician to say, for example, 'I've been treating your HIV for five or 10 years now and support your decisions not to tell your parents, but now the questions are going to come up [as the patient enters the final stages of life]. Have you thought of what you want me to do when those questions come up and you're no longer here?'" says Finder.
Liang suggests the discussion of what — if anything — the patient wants disclosed after death should take place well before death is imminent.
"As there should be a standard discussion about health care proxies or living wills, there should also be a standard discussion about what the patient wishes to have disclosed, if anything, as well as to whom he or she would want this disclosure made," he says. "It should occur early in the process, when the patient is not under tremendous stress and emotionally saturated in addressing the disease state he or she is experiencing."
Rosenthal says that just as advance directives and wills let patients determine some aspects of their deaths and what is and is not allowed, patients can talk with their physicians about what information disclosures they are comfortable with taking place after their deaths.
"I don't see any reason practitioners shouldn't ask [patients about their disclosure wishes], but I don't think there is any hard and fast rule compelling them to ask," she adds. "I think the burden still falls to the health care provider, and they will have to weigh each situation."
And technology may render some wishes about post-mortem confidentiality moot, Finder says, as we gain increasing ability to reassess health information from the past.
"At what point does my health information become public? People keep going back and asking why George Washington died, and whether Lincoln's height was due to a nutritional phenomenon, so what about ordinary citizens' health information?" Finder asks. "I think you can make an argument that researchers may have legitimacy in gaining access to our information after a period of time — maybe after six or seven generations, or a hundred years — for certain purposes. That legitimacy, however, like the justification for accessing my information now, will still be bound up with the question of how best to show respect."
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