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More than I wanted to know
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Robert Harding
Jabs & Jibes
Rights were not granted to include this image in electronic media. Please refer to the printed journal.
Joal Hill e-mail: [email protected]
1654
Conduct and compassion
More than I wanted to know he physician’s obligations to tell the truth, keep confidences, and not deceive are often presented as a single duty, when in fact they are distinct and potentially conflicting. The cases in the panel highlight this conflict, not only in terms of the obligations owed, but also the way in which medical advances have expanded the definition of “patient”, complicating the web of trust and fidelity inherent in the physician-patient relationship. Asserting that her primary obligation is to the patient, for example, does not narrow Dr Romney’s options. Both Edith and Roger Thomson have sought her advice and rely on her disclosure in making decisions about their future. Ironically, the information that the Thomsons anxiously await is good: since only one parent is a carrier, they are not at risk of losing another child to this disorder. The consequences of that news, however, could be more devastating to their future plans than the results they now fear. Romney may be tempted to withhold news about paternity out of concern for her patients’ wellbeing. But in this case that would be impractical and unwise. Edith and Roger understand that both parents must have carried the gene in question. Therefore, Romney can only withhold information about paternity by misinforming them about their test results. To allow the Thomsons to think that Roger carries the genetic disease would be unconscionable; the fact of non-paternity cannot be separated from the medical information that Romney must disclose. Dr Mandell’s choice is, in one respect, more complex. While he must refuse to deceive
T
or defraud Rachel by drawing blood for a test he has no intention of performing and then lying to her about the results, the truth of nonpaternity is not inextricably linked to the core medical issue. Rachel’s suitability to be a donor for Joseph is not
care or Rachel’s tissue tests. However, the potential benefits of withholding information to protect a family already in crisis must be weighed against the harm that could result. Should Rachel find out in the future that Mr Barnes is not her father, she may be angry that
Should the doctors in these cases disclose non-paternity? The Thomsons 3 months ago, Edith and Roger Thomson lost their newborn son to a rare genetic disorder. They want to undergo genetic testing to help them decide whether to conceive another child or start adoption proceedings. The day before meeting the Thomsons, Dr Ellen Romney reviews their test results. Only Edith carries the recessive gene for their son’s disorder. Roger is not a carrier, and could not have been the boy’s father. Romney knows that the Thomsons assume they are both carriers of the gene, thus it is probable that Roger is unaware of the baby’s true paternity. It is possible that Edith also does not know, although perhaps she has simply remained silent. What should Romney tell the Thomsons?
The Barnes Dr Luke Mandell directs the care of 15-year-old Joseph Barnes, a boy on chronic dialysis who needs a kidney transplant. Joseph’s parents and his 20-year-old sister Rachel have volunteered to be tested as donors. One afternoon, Mrs Barnes asks to speak to Mandell privately. Tearfully, she explains that Rachel is not Mr Barnes’ biological daughter. “The first few years of my marriage were very rocky”, she says, “and I foolishly had an affair with an old boyfriend. Because Rachel was a bit premature my husband never suspected anything, and I never told him because he would have been heartbroken. Please don’t do this test on my daughter. It would destroy our family. You can take her blood, but just throw it away and tell her that her tissue was not a match. I don't want there to be a record that she may discover one day.” How should Mandell respond?
nullified by being his half-sister. Disclosure of her tissue test results—positive or negative— will not require disclosure of non-paternity. However, the fact that it isn’t necessary to disclose nonpaternity does not mean that this is the wisest course. Mandell may conclude that keeping this family secret is justifiable, since it does not require any deception or withholding of medical information regarding Joseph’s
Mandell and his team withheld this information. It may also be important for her to know the identity of her biological father, if only to know better her own health history. Although the circumstances of these cases are unusual, they underscore the values inherent in the physician-patient relationship, and emphasise the relevance of both the ethical prerogative of whether to tell, and the ethical power of how to do so.
THE LANCET • Vol 363 • May 15, 2004 • www.thelancet.com
For personal use. Only reproduce with permission from The Lancet publishing Group.
Robert Harding
Jabs & Jibes
Rights were not granted to include this image in electronic media. Please refer to the printed journal.
Joal Hill e-mail: [email protected]
1654
Conduct and compassion
More than I wanted to know he physician’s obligations to tell the truth, keep confidences, and not deceive are often presented as a single duty, when in fact they are distinct and potentially conflicting. The cases in the panel highlight this conflict, not only in terms of the obligations owed, but also the way in which medical advances have expanded the definition of “patient”, complicating the web of trust and fidelity inherent in the physician-patient relationship. Asserting that her primary obligation is to the patient, for example, does not narrow Dr Romney’s options. Both Edith and Roger Thomson have sought her advice and rely on her disclosure in making decisions about their future. Ironically, the information that the Thomsons anxiously await is good: since only one parent is a carrier, they are not at risk of losing another child to this disorder. The consequences of that news, however, could be more devastating to their future plans than the results they now fear. Romney may be tempted to withhold news about paternity out of concern for her patients’ wellbeing. But in this case that would be impractical and unwise. Edith and Roger understand that both parents must have carried the gene in question. Therefore, Romney can only withhold information about paternity by misinforming them about their test results. To allow the Thomsons to think that Roger carries the genetic disease would be unconscionable; the fact of non-paternity cannot be separated from the medical information that Romney must disclose. Dr Mandell’s choice is, in one respect, more complex. While he must refuse to deceive
T
or defraud Rachel by drawing blood for a test he has no intention of performing and then lying to her about the results, the truth of nonpaternity is not inextricably linked to the core medical issue. Rachel’s suitability to be a donor for Joseph is not
care or Rachel’s tissue tests. However, the potential benefits of withholding information to protect a family already in crisis must be weighed against the harm that could result. Should Rachel find out in the future that Mr Barnes is not her father, she may be angry that
Should the doctors in these cases disclose non-paternity? The Thomsons 3 months ago, Edith and Roger Thomson lost their newborn son to a rare genetic disorder. They want to undergo genetic testing to help them decide whether to conceive another child or start adoption proceedings. The day before meeting the Thomsons, Dr Ellen Romney reviews their test results. Only Edith carries the recessive gene for their son’s disorder. Roger is not a carrier, and could not have been the boy’s father. Romney knows that the Thomsons assume they are both carriers of the gene, thus it is probable that Roger is unaware of the baby’s true paternity. It is possible that Edith also does not know, although perhaps she has simply remained silent. What should Romney tell the Thomsons?
The Barnes Dr Luke Mandell directs the care of 15-year-old Joseph Barnes, a boy on chronic dialysis who needs a kidney transplant. Joseph’s parents and his 20-year-old sister Rachel have volunteered to be tested as donors. One afternoon, Mrs Barnes asks to speak to Mandell privately. Tearfully, she explains that Rachel is not Mr Barnes’ biological daughter. “The first few years of my marriage were very rocky”, she says, “and I foolishly had an affair with an old boyfriend. Because Rachel was a bit premature my husband never suspected anything, and I never told him because he would have been heartbroken. Please don’t do this test on my daughter. It would destroy our family. You can take her blood, but just throw it away and tell her that her tissue was not a match. I don't want there to be a record that she may discover one day.” How should Mandell respond?
nullified by being his half-sister. Disclosure of her tissue test results—positive or negative— will not require disclosure of non-paternity. However, the fact that it isn’t necessary to disclose nonpaternity does not mean that this is the wisest course. Mandell may conclude that keeping this family secret is justifiable, since it does not require any deception or withholding of medical information regarding Joseph’s
Mandell and his team withheld this information. It may also be important for her to know the identity of her biological father, if only to know better her own health history. Although the circumstances of these cases are unusual, they underscore the values inherent in the physician-patient relationship, and emphasise the relevance of both the ethical prerogative of whether to tell, and the ethical power of how to do so.
THE LANCET • Vol 363 • May 15, 2004 • www.thelancet.com
For personal use. Only reproduce with permission from The Lancet publishing Group.