Healthcare Professionals, Unexpected Test Results & Moral Distress
"What the parents do with the information is not for the sonographer to determine."1 So stated Jodie Long, CEO of the Australasian Sonographers Association, when questioned whether sonographers should provide information about the baby's sex when conducting a prenatal ultrasound, even if they know the parents plan to abort the baby if it is the undesired sex. Long answered affirmatively, saying the sonographer should provide the information in a neutral manner if asked.
Long had the same advice about sonograms that show any kind of fetal abnormality. If the sonographer has some level of confidence in what the sonogram reveals, he or she must tell the parents, but do so in a neutral manner. Then the parents, not the sonographer, "will decide what to do with that information," she said.
The reason for maintaining a neutral stance when communicating test results to patients is to promote patient autonomy. But is it really possible to both maintain professional neutrality and promote patient autonomy in the context of disclosing unwelcome information?
It turns out that the expectation of neutrality as an aid to patient autonomy is a fiction. Communication is an essential element of giving information to patients, and it can be shaped by tone of voice, facial expression, eye contact, and word choice. Even while attempting to remain neutral, a sonographer—or nurse or doctor—may subconsciously or unwittingly telegraph his or her views about terminating a pregnancy because the baby is the "wrong" sex, for instance, or because the child has Down syndrome.
An oft-repeated guideline for genetic counseling (and other counseling scenarios) is to make it "non-directive." This model assumes that counselors will provide medical and physiological information in a neutral manner, helping patients exercise their autonomy, and then remain neutral about the patient's decision. But even though it claims to be neutral, the non-directive model is actually value-laden, because making individual autonomy the primary objective is itself a value, one that ranks "freedom of choice over protection from risk."2
Moreover, despite the claims of neutrality, and professional allegiance to non-directive counseling, what actually happens in a clinic office is often at odds with those standards. Whether coming from a sonographer, a doctor, or a geneticist, the choice of words can have a powerful influence on the patient's decision. For example, one study showed that when doctors asked, "Would you like CPR if your loved one's heart stops?", most family members responded "yes." But when the question was framed in terms of "allowing a natural death," support for CPR decreased dramatically.3
On the one hand, sonographers must avoid influencing parents about their decision to abort a healthy child because of the baby's sex, while on the other hand, physicians and other healthcare professionals feel free to assume that parents will want to "terminate the pregnancy" if the child has Down syndrome or another genetic anomaly.
Many friends have related their own prenatal experiences to me. One typical encounter occurs when a wife comes to a prenatal appointment with her husband: she will be shepherded into a private room without him and asked questions like, "Is your husband forcing you to continue this pregnancy?" and "Is he preventing you from getting prenatal testing?"
In one study, parents of children with Down syndrome and other disabilities volunteered that their experiences with physicians were negative, by a 2.5-to-1 margin.4
These parents complained that the doctors lacked compassion, perpetuated negative stereotypes about people with Down syndrome, and pressured them to have prenatal testing. This scenario plays out again and again, regardless of the patient's level of education or moral beliefs.
Writer Jillian Benfield recounted on her blog how her doctor delivered the news that her baby would have Down syndrome. In an imaginary letter to her doctor, she wrote:
When I asked you what Down syndrome meant for our child's life, you said this: "At worst he will never be able to feed himself. At best he will mop the floors of a fast food restaurant some day."
That was it. The entire talk about his actual diagnosis was made up of arbitrary limitations, deemed by you.5
A negative initial encounter can sour the physician-patient relationship, and undermine the trust that is essential to good patient care.
Some doctors are aware that physician-patient trust is eroding, which can compound the difficulty of communicating an unwelcome diagnosis. One physician lamented that the burdens of fulfilling government-imposed mandates often interfere with providing good care. For instance, requirements to document "meaningful use" and to use electronic health records (EHRs) often force a doctor to pay more attention to the computer screen than to the patient:
Patients take this lack of eye-to-eye contact as a sign that we are more interested in their digital record than [in] them. They feel we are no longer listening to them. They don't realize that we don't want to be doing this. It has been imposed on us from on high, and we will be penalized if we don't.6
External pressures that interfere with patient care and trusting relationships take their toll on both patient and physician. In addition to the problem of eroding trust, scholars are also drawing attention to the growing problem of moral distress.
Moral distress was first identified in the nursing literature back in 1984 by Andrew Jameton, who described it as occurring when a nurse "knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action."7 The term has subsequently been broadened to apply to other health professionals, and it can include moral conflict, dilemma, or uncertainty.8
Healthcare professionals make dozens of complex decisions throughout the day, some of which can affect the life or death of the patient. Doctors and nurses who know what is the right thing to do, but are prohibited by institutional, legal, or other factors from doing it, can experience moral distress.9 Such distress can cause negative physical, psychological, and emotional responses, and can even trigger burnout and the abandonment of one's profession.
What if, for instance, institutional rules prohibit a physician from suggesting a positive outcome for parents of a baby with Down syndrome? Or from urging parents not to rush into irreversible surgery and hormone treatments for their gender-confused child? Mandating "neutrality" may satisfy institutional imperatives, but it may also undermine the very nature of medical professionalism. Good medicine includes caring for people when they are at their most vulnerable, whether in the womb or in a hospital gown. Some doctors have had enough, and are walking away from their profession.
For Those Who Don't Quit: Hope
The shining quality that Christian doctors and nurses can offer patients and their families is hope. Paint a picture of an alternative future. What if Jillian Benfield's physician, instead of describing her son as a future floor-mopper, had said, "The test indicates that your child has Trisomy 21, or Down syndrome. I know that this is disappointing news for you, and that it may take some time to absorb. Remember, this diagnosis only tells us what chromosomal problem your baby has; it tells us nothing about who he will become. Would you be willing for me to share some options about your baby's future?"
Rather than inflicting moral distress on both patient and physician, genuine care, compassion, and hope-filled honesty can build a trusting relationship. The "hands off" pretense of neutrality places the entire burden on the patient. But the compassionate communication of difficult news signals a shared burden, a willingness to walk alongside the patient, helping him or her come to terms with the unexpected. Communicating hope benefits both the patient and the professional.
Empathic health professionals seem to persist longer in their profession.10 "I'm just the messenger" undermines that desirable quality. Requiring health professionals to suppress moral values and genuine concern is unhealthy for them, for their patients, and for society.
1. Aisha Dow, "'We need to know the sex. If it's a girl we are going to terminate it,'" Sydney Morning Herald (Aug. 19, 2018): smh.com.au/healthcare/we-need-to-know-the-sex-if-it-s-a-girl-we-are-going-to-terminate-it-20180816-p4zxvr.html.
2. Ellen Moskowitz and Bruce Jennings, "Directive Counseling on Long-Acting Contraception," American Journal of Public Health (June 1996): https://ajph.aphapublications.org/doi/pdf/10.2105/AJPH.86.6.787.
3. Xu Hong, "The Influence of Word Choices in Patient-Doctor Communications," MIMS Today (Jan. 14, 2017): https://today.mims.com/the-influence-of-word-choices-in-patient-doctor-communications.
4. Briana Nelson Goff et al., "Receiving the Initial Down Syndrome Diagnosis: A Comparison of Prenatal and Postnatal Parent Group Experiences," Intellectual and Developmental Disabilities (2013): http://krex.k-state.edu/dspace/bitstream/handle/2097/18330/GoffIntelDevDis2013.pdf?sequence=1.
5. Jillian Benfield, "To the Doctor Who Delivered My Son's Diagnosis: You Could Have Done Better," ScaryMommy.com (n.d.): scarymommy.com/down-syndrome-diagnosis-doctors-do-better (emphasis in original).
6. Linda Girgis, "Why Doctors Are Losing the Public's Trust," Physician's Weekly (Dec. 18, 2017): physiciansweekly.com/doctors-losing-publics-trust.
7. Andrew Jameton, Nursing Practice: The Ethical Issues (Prentice-Hall, 1984), 6.
8. Carina Fourie, "Who Is Experiencing What Kind of Moral Distress? Distinctions for Moving from a Narrow to a Broad Definition of Moral Distress," AMA Journal of Ethics (2017): https://journalofethics.ama-assn.org/article/who-experiencing-what-kind-moral-distress-distinctions-moving-narrow-broad-definition-moral-distress/2017-06.
9. Ann Marie Corrado and Monica L. Molinaro, "Moral Distress in Health Care Professionals," University of Western Ontario Medical Journal (Fall 2017): uwomj.com/wp-content/uploads/2017/12/vol86no2_12.pdf.
10. Ezequiel Gleichgerrcht and Jean Decety, "Empathy in Clinical Practice: How Individual Dispositions, Gender, and Experience Moderate Empathic Concern, Burnout, and Emotional Distress in Physicians," PLoS ONE (2013): https://doi.org/10.1371/journal.pone.0061526.
is the Executive Director of The Center for Bioethics & Human Dignity in Deerfield, Illinois.This article originally appeared in Salvo, Issue #47, Winter 2018 Copyright © 2020 Salvo | www.salvomag.com https://salvomag.com/article/salvo47/im-just-the-messenger