CASE 21
Pepper Hawthorne
A 19-year-old Caucasian woman with a stroke
Educational Objectives
Explain how a young woman's symptoms might be perceived as hysterical or psychogenic, particularly when there is little objective evidence of active disease.
Assess how assumptions that might be made about patients based on their appearance and/or behavior, even if not directly relevant to their diagnosis may impact their access to care.
Analyze how communication between health care personnel and patients may be distorted by erroneous perceptions.
TACCTDomains: 1, 3, 4, 6
Case Summary, Questions and Answers
Pepper Hawthorne is a 19-year-old college sophomore who developed sudden weakness and numbness of her left arm, and then the leftside of her body, while studying for her final exams. Apart from endometriosis, for which she had recently undergone minor surgery, Ms. Hawthorne is otherwise healthy. She presented to the Emergency Department (ED) 1 hourafterthe onset of her symptoms and was immediately assessed by the triage nurse who noted that she was anxious, restless, and speaking rapidly. Suspecting that this was an anxiety attack, or malingering to get out of her exams, the nurse triaged Ms. Hawthorne as a nonurgent patient, saying to her, “Honey, have a seat and take some deep breaths. I think you are going to be just fine.” Four hours later, she is called back into the treatment area to be seen by a physician. Although she was less anxious, she was still unable to move her left arm. Ms. Hawthorne becomes very tearful and emotional when asked by the physician about the duration of her “paralysis.” He then asks, “Do you think you might be pregnant?”
She responded, “How could I be pregnant? I just had endometriosis surgery. Why won't anybody take me seriously?”
She is unable to move her left arm, but the physician suspects that this is volitional. Like the triage nurse, the ED physician is also suspicious that her symptoms are due to anxiety or stress and attempts to reassure her by saying, “I think you are going to be fine, but let's get a CT scan of your head to make sure everything is ok.” He also orders a benzodiazapine.
1 What factors may have contributed to the nurse and the physician minimizing the significance of her symptoms?
Two interrelated factors, age and gender, coupled with Ms. Hawthorne's social situation may have contributed to minimization of her complaints. With respect to her age, the staff may have been influenced by the fact that stroke is much more common in middle-age and elderly patients. Stroke, however, in young adults is not exceptional; about 12% of first-time strokes occur in patients under age 45.
Physical findings suggestive of an acute stroke may also be found in patients with a conversion disorder, manifested by complaints of motor and/or sensory dysfunction without a neurological explanation. This disorder occurs in a younger age group (ages 10 to 50 years), predominately in women, and is often triggered by psychosocial stressors, all of which were present in this patient. Thus, entertaining the possibility of a conversion disorder was not inappropriate. However, gender stereotypes may have led the staff to conclude too quickly that the symptoms were “functional” in nature, due to either malingering or a conversion disorder.
Ellen Goudsmit, a clinical psychologist based in England who has worked extensively in the area of chronic fatigue syndrome, has written about what she calls the “psychologicalization of illness.” She describes psychologicalization as “the emphasis on psychological factors where there is little or no evidence to justify it. It's a process where relevant findings are ignored or downplayed in favor of data from incomplete examinations, flawed research or anecdotal reports.” In a clinical context, differential diagnoses may be dismissed prematurely, whereas psychological explanations are readily accepted. Psychologicalization does not refer to situations where there is sound evidence that psychological factors play a significant role or where all the arguments are discussed and the psychological explanations are deemed the most persuasive. Psychologicalization is a serious issue because it leads to misdiagnosis, inappropriate treatment, and unnecessary psychological distress. Moreover, it undermines the general population's confidence in orthodox medicine and reduces their trust in its practitioners.
With respect to women's health, there is good evidence that psychologicalization, although a feature of medicine in general, appears to disproportionately affect the care that women receive. The belief that psychological factors play a significant role in the complaints reported by women may explain in part why women may be evaluated less rigorously than men with similar complaints.
The patient's mother has arrived and is now in the examination room with her daughter. A CT scan of the head is obtained and shows early signs of a right frontal lobe infarction. After returning from the scan, Ms. Hawthorne is mildly lethargic from the sedative, and the ED physician now notes subtle drooping of the left side of her face. The stroke team is called to evaluate the patient, but she is no longer a candidate for acute thrombolytic therapy, as too much time has elapsed since the onset of her symptoms. As the neurologist seeks an etiology for the stroke, he asks, “Did you use cocaine today?”
She denies the use of cocaine or any other illicit drugs.
The neurologist then asks, “Would you like your mother to step out of the room for a few minutes?”
Ms. Hawthorne responds, “She can leave, but I still didn't take any cocaine!” She later complains to her mother that she felt insulted by the neurologist's questions.
2 What other approaches could have been used to discuss the issue of illicit drug use with the patient?
Illicit drug use, particularly cocaine and amphetamines, is an important cause of stroke in young people, and it was therefore appropriate to question Ms. Hawthorne about this issue. Given the fear of disclosure by those who might be using/abusing drugs and the possibility of offending those who are free of drugs, it is critical that the question(s) around drug use be properly framed. For example, one might begin by saying:
The CT scan suggested that you have had a stroke. There area number of unusual things that may cause a stroke in a young person, so I have to ask you some questions . . . ”
Further, if there was concern that the mother's presence was preventing the patient from being candid about illicit drug use, then waiting for an opportunity when the mother was out of room to re-address the issue might have been a better approach than asking the mother to “step out.”
Ms. Hawthorne is initially treated with aspirin and routine supportive stroke care. A toxicology screen confirmed the absence of any illicit substances, and her pregnancy test was negative. A transesophageal ECG reveals a patent foramen ovale (PFO), but all other tests are normal. After being informed by the resident that she has a “hole” in her heart, Ms. Hawthorne becomes very distressed and tearful and begins to ask several questions. The resident then indicates that the team will discuss the situation with her mother and get back to her. After discussions with her mother, it is decided that a catheter-related, nonsurgical technique will be used to close the PFO.
3 What is the basis for the team's paternalistic approach to this patient's treatment, excluding her from the decision-making process?
Legally, patients are assumed to be competent to make medical decisions once they are 18 years and older. However, as adolescent children transition into young adulthood, individual life experiences are different and rates of maturation are not uniform. As a result, the capacity to make medical decisions will vary from one 18-year-old to another and may still be less than complete at this age. This, in turn, may result in the tendency to defer to the parents of legally competent young people. The goal, however, is to respect the autonomy of the young person by beginning the process with him/her and having the parents as a resource that the patient uses to make his or her decision.
A greater challenge is the patient who is younger than 18, particularly in the setting of advanced cancer or end-stage neuro-muscular disease and end-of-life decision making. The Committee on Bioethics of the American Academy of Pediatrics has stated, “Decision-making involving the healthcare of older children and adolescents should include to the greatest extent feasible, the assent of that patient.” With careful attention to each patient's developmental capacity, rationality, and autonomy, the committee proposed that this could be accomplished by:
- Helping the patient achieve a developmentally appropriate awareness of the nature of his or her condition.
- Telling the patient what he or she can expect with tests and treatments.
- Making a clinical assessment of the patient's understanding of the situation and factors influencing how he or she is responding (including whether there is inappropriate pressure to accept testing or therapy).
- Soliciting an expression of the patient's willingness to accept the proposed care. (The patient's views should only be solicited if they will be seriously considered). Without undermining parental authority or disenfranchising the parents, the goal is that “as children develop, they should gradually become the primary guardians of personal health and the primary partners in medical decision-making, assuming responsibility from their parents.”
The Age of Majority
In the past three decades, laws related to medical treatment for minors have changed slowly. In 1971, the age of “majority” was changed from 21 to 18; however, in most states, patients under 18 still have no legal rights to participate in medical decision making unless deemed to be “emancipated minors” by virtue of being self-supporting and not living at home, married, in the military, or have petitioned the court to be considered “emancipated.” In a few states with “mature minors rules,” adolescents over the age of 15 may be treated, without parental involvement, when seeking treatment for contraception, pregnancy, or sexually transmitted diseases.
4 In what way does this case illustrate how a physician's belief or assumption could lead to health-related disparities?
The inappropriate assumptions of the staff ultimately prevented Ms. Hawthorne from receiving stroke-limiting thrombolytic therapy. Multiply these treatment-delaying assumptions many times over in other physicians and nurses with similar beliefs and one could have a health-related disparity in which a potentially significant number of young women do not receive state-of-the art stroke therapy.
Follow-up
During the next few years, the patient recovers substantially from her stroke, graduates from college, and develops a support group for young stroke survivors. She learns that she could have been treated with thrombolytics, had alternative treatment options for her PFO, and regrets not having been able to make her own choices. She now lectures to medical students and other trainees about her misadventures as a patient.
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