TELLING THE TRUTH

TELLING THE TRUTH
	Chapter 3 BACKGROUND AND ELABORATION

Telling patients the truth about their medical histories and conditions promotes a trusting doctor-patient relationship, signals openness (the opposite of shame), reduces the sense of stigma, and enables patients to understand the health and quality-of-life benefits of adherence to medical care. Patient-centered care by definition cannot occur in the absence of truth-telling. Truth-telling needs to be geared to the child’s maturity and is most likely to succeed when it is accomplished in the context of a trusting patient-doctor relationship, one in which an atmosphere of trust has been fostered. In such circumstances, children feel comfortable asking questions and answering questions.

When clinicians are telling the truth to patients, the parents should be present so that there is no misunderstanding. The explanations should be geared to the developmental level of the child and the questions being asked. Full disclosure of the medical facts should typically occur at the latest by age 16 in cooperation with the parents and mental health members of the team. When a patient goes to obtain his or her records at age 18, he or she should find no surprises.

	WHAT’S THE TRUTH?
Telling patients and parents the truth doesn’t just mean avoiding outright lies; it also means not withholding critical information like karyotype, diagnosis, and crucial facts of a medical history. When clinicians try to protect patients through euphemisms or by withholding information, they may inadvertently harm the patient and the doctor-patient relationship. Many physicians were trained in the past to refer to the testes of patients with AIS as “gonads,” believing that full knowledge of their AIS and testes would interfere with AIS patients’ psychosexual development.[Conn2005] This led to much hardship for girls and women with AIS who found out the truth by accident.[Groveman1998] One peer supporter with AIS relates the following stories: “One girl told me her chart was left in the room, and so she peeked at it and thought it read ‘Patient does not know she has AIDS’ (when actually it said ‘patient does not know she has AIS’). Another told me she was kibitzing with an intern about sex chromosomes, not knowing she had XY chromosomes, when the intern misread the situation and suddenly blurted out to her, ‘Ha! Well you have XY!’ A third overheard staff commenting ‘Hey, we’ve got a hermaphrodite in Exam Room 2!’” Some introductory biology and genetics classes have included a lab in which buccal smears are performed, revealing the students’ karyotypes. Some patients have been permanently alienated from health care professionals and emotionally scarred by these kinds of experiences. Parents who want providers to withhold information from their children may need support for their own concerns. They should also be advised that once children turn 18, they will be entitled to their full medical records, and that, even before that age, children have a way of picking up on family secrets and lies. Parents should be offered professional counseling in how to speak the truth with their children.

WHAT’S THE TRUTH?

Telling patients and parents the truth doesn’t just mean avoiding outright lies; it also means not withholding critical information like karyotype, diagnosis, and crucial facts of a medical history. When clinicians try to protect patients through euphemisms or by withholding information, they may inadvertently harm the patient and the doctor-patient relationship.

Many physicians were trained in the past to refer to the testes of patients with AIS as “gonads,” believing that full knowledge of their AIS and testes would interfere with AIS patients’ psychosexual development.[Conn2005] This led to much hardship for girls and women with AIS who found out the truth by accident.[Groveman1998] One peer supporter with AIS relates the following stories: “One girl told me her chart was left in the room, and so she peeked at it and thought it read ‘Patient does not know she has AIDS’ (when actually it said ‘patient does not know she has AIS’). Another told me she was kibitzing with an intern about sex chromosomes, not knowing she had XY chromosomes, when the intern misread the situation and suddenly blurted out to her, ‘Ha! Well you have XY!’ A third overheard staff commenting ‘Hey, we’ve got a hermaphrodite in Exam Room 2!’” Some introductory biology and genetics classes have included a lab in which buccal smears are performed, revealing the students’ karyotypes. Some patients have been permanently alienated from health care professionals and emotionally scarred by these kinds of experiences.

Parents who want providers to withhold information from their children may need support for their own concerns. They should also be advised that once children turn 18, they will be entitled to their full medical records, and that, even before that age, children have a way of picking up on family secrets and lies. Parents should be offered professional counseling in how to speak the truth with their children.


REDUCING STIGMA RELATED TO MEDICAL CARE		THE IMPORTANCE OF SEXUAL WELL-BEING