- Richard Wenzel
“NPE” is an illness!
Updated: Sep 21, 2021
Even if the topic seems sensitive or embarrassing, it’s best to be honest and upfront with your health care provider.
- National Institutes of Health, Talking with Your Doctor
Truthful and open communication between physician and patient is essential for trust in the relationship and for respect for autonomy. Withholding pertinent medical information from patients in the belief that disclosure is medically contraindicated creates a conflict between the physician’s obligations to promote patient welfare and to respect patient autonomy.
- American Medical Association’s Code of Ethics
I have a question: is being an NPE a medical issue?
I ask because if a physician, genetic counselor, or other clinician discovers (via interacting with you, your child, your parent, or your sibling) that you are an NPE, you may not be told the truth. You may not be told anything. Why? As discussed in prior blog posts [NPEs, help your helpers (npeguide.com)], some professional medical organizations and medical literature argue against disclosing NPE discoveries because:
- the truth might distress the affected individual(s),
- the truth might negatively impact the family unit,
- the truth might cause financial harm,
- the truth might yield physical harm, for example, a man learning of his wife’s infidelity might retaliate against her (note - I will comment more in a moment),
- clinicians may not have the time, training, or resources to effectively manage an NPE situation, and (the most dubious excuse),
- if a person did not specifically seek NPE information, no reason exists to share NPE information.
What nonsense! Lawyers could get wealthy off any doctor that said, “the patient did not specifically seek liver failure information, so I did not disclose their liver failure.”
Although, if NPE is not a medical issue, then perhaps a physician then could skirt revealing this information on that basis?
Let’s discuss reality.
Every day across this country, clinicians are the bearers of bad news, informing countless individuals about newly diagnosed, life-changing maladies: cancer, diabetes, heart failure, asthma, kidney failure, Alzheimer’s, liver failure, glaucoma, and so forth. These illnesses can diminish an individual’s ability to work, drive, talk, walk, see, exercise, hear, stand, sleep, recall memories, or otherwise freely live life as they so choose. Patients are told they need surgery – sometimes immediately – and that the surgery might cause dreadful complications including death. Clinicians prescribe medications that cause drowsiness, weight gain, dry eyes, dry mouth, constipation, and a decreased sex drive, to name just a few adverse effects. And every day some clinicians deliver the ultimate terrible news: an illness will soon be fatal.
Diseases reach beyond patients to negatively impact spouses, friends, other relatives, co-workers, neighbors, and especially children. Sadness, anxiety, worry, depression, heartache, and other troubles can occur among all these individuals. Disputes arise. For example, relatives may angrily blame a life-long smoker for their just-diagnosed with lung cancer. Or a patient’s spouse - despondent by an illness’ invasion on their marriage - may decide to file for divorce; yes, THAT happens!
Financial tolls loom large: every year two-thirds of all personal bankruptcies are due to medical bills. (25+ Medical Bankruptcy Statistics to Know in 2021 (spendmenot.com))
So, every day modern health care involves turning people’s lives upside down with unwanted and often unexpected news. Yet every day clinicians find the fortitude, honesty, courage, empathy, sympathy, and decency to provide patients factual assessments about their illness. Clinicians teach skills to better manage disease, give devices and supplies, and connect people to support groups, among other constructive actions. Family members are involved in decisions, educated about the illness, and offered resources. And many clinicians end their patient encounters with “here’s my phone number, call me if you have any questions or problems.”
What a radical idea: give people truthful information and offer various support to empower them to confront their challenge!
So, why are individuals affected by NPE discoveries not consistently afforded the same aid? Why do some professional organizations support disseminating knowingly false information? Why do some clinicians argue that “no right to know your genetic origins exists” or that “withholding some information is ethically justifiable” or “honesty is not always the best policy”? Why does Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents (Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents: The American Journal of Human Genetics (cell.com) ) state “.….we recommend that health-care providers avoid disclosure of misattributed parentage [such as an NPE] unless there is a clear medical benefit that outweighs the potential harms.”
What is the “clear medical benefit” of continuing a lie? Indeed, what obligation or justification does any clinician have to perpetuate a lie? Moreover, how can a lie – in-and-of-itself – be characterized as anything other than harmful? How is allowing a false narrative to continue, grow, and become further entrenched in the minds of the affected individuals ethically justifiable? Who benefits, especially from a long-term perspective? Is halting a lie a “harm”? Is so, why? How is anything built on a premise of falsehood twisted into something noble that must be preserved?
Being an NPE can have profound health ramifications: this is irrefutable. Based on the false belief that they are genetically related to someone (parent, grandparent, sibling) diagnosed with an illnesses such as certain cancers, an NPE may mistakenly believe that they too are at high risk for cancer and seek unwarranted medical evaluations and treatments (incurring the angst, lost time, financial costs, and adverse effects). Conversely, an NPE may falsely believe they have little-to-no risk for a particular illness because their genetically unrelated “relatives” do not have the illness, thus the NPE may avoid or delay seeking potentially life-saving medical evaluation and treatments.
Clearly, the sooner an NPE knows their genetic truth, the sooner they can obtain proper medical care!
An NPE discovery can create urgent, life-altering, health-impacting consequences, same as the discovery of dozens of other medical situations. I am confident that clinicians who every day find the fortitude, honesty, empathy, problem-solving skills, and decency to tell people the truth about their illnesses, can use these same qualities to inform people about the truth of their biological parent(s), as well as connect patients and their families to support and resources that will help them to navigate the depression, despair, disputes, and financial struggles that may ensue.
Imagine a world where clinicians candidly, responsibly, and sympathetically provided NPEs with truth. And tools to cope. And referrals to specialists. And help for affected family members. And information about support groups. And said, “here’s my phone number, call me if you have questions or problems.”
Why do NPEs have to imagine such a world? Demand more from your clinicians! Demand honesty! Remind clinicians that knowingly propagating false information is ineffective, unethical, and possibly criminal. Tell your clinicians that nothing noble exists in attempting to smother someone’s secret forever! Moreover, contemporary society’s access to information, genealogy family trees, and commercial DNA tests will reveal the truth, probably sooner than clinicians realize, at which point they may then find themselves uncomfortably forced to explain their decisions, perhaps in a court of law.
Finally, my comment about withholding NPE truth because of fear that someone’s safety might be jeopardized (a man threatening a woman is the most likely scenario). This is not a problem that will magically go away. The sooner the issue is addressed, the better. How can any intelligent person think that sending a woman home with a potentially violent man – who at an inopportune moment could learn the NPE truth – is a rational course of action? Such action is not rational! Or ethical! Or intelligent! Or useful! Indeed, I believe such action should be prosecuted as criminal! Any clinician who fears that someone might physically harmed if an NPE truth is revealed should immediately assist that that person (and any children) to find support, if not safety. Additionally, begin planning for how to disclose the truth in a controlled fashion to the potentially violent person. Recognize that this person may have even greater rage in the future if he discovers the truth and is further enraged by learning that trusted, “honest” clinicians lied to him. The possibility exists he may take out his rage against the clinicians. Be proactive! Help avoid this mess of a situation! Find a way to bring the truth, and acceptance of the truth, into the open as soon as feasible.