The Right to Conceive by Any Means Necessary?

Should ALL patients have the right to conceive using modern medical technology?

Case: Mr. T is a 30-year-old man who has cystic fibrosis (CF) and cannot conceive naturally because he lacks both vas deferens due to his disease (97% of men who have CF are infertile). Mr. T and his wife, Mrs. T, desperately want children. To complicate matters, Mrs. T also carries the CFTR gene, although she does not have the disease. Their children would therefore have a high likelihood of being born with CF. The T's are seeking advice from their physician about pursuing in vitro fertilization so that Mrs. T may carry their child.

Background: CF is a progressive and life-shortening, autosomal recessive disease for which there is no cure. However, there are treatments that can prolong the patient’s life and relieve suffering. CF affects the whole body, but difficulty breathing is the most serious symptom. Currently, the life expectancy for someone with CF is in the forties.

Questions: Should Mr. T’s physician recommend against in vitro fertilization due to the high risk that the child would be born with this debilitating and fatal disease? Due to the high mortality rate associated with the disease, the Social Security Administration tends to award disability benefits to children with CF. Therefore, does the government have the right to regulate in vitro fertilization clinics and not allow such high risk couples to pursue the procedure? What other ethical issues are at work in this case?

Bioethics News: US Apologizes for Deliberately Infecting Hundreds of Guatemalans with STDs

Apparently the US government decided to test whether penicillin would also work as a vaccine for STDs by deliberately infecting around 700 Guatemalans with syphilis and gonorrhea in the 1940s. Most "participants" were prisoners or mentally ill and did not give consent. You can read more about this from BBC and CNN.

If this reminds you of the now infamous Tuskegee syphilis experiment-- it should. Both happened during the same time period. I wonder where else in the world we have deliberately infected people in the name of science?

Is Health Care a Human Right?

You’re in the last week of your one-month rotation in El Salvador. The clinic’s housekeeper brings in her 2-year-old son, Javier. He is small for his age, gets tired very easily, and since birth has had episodes in which he turns blue and passes out. You and your attending determine that he has a serious congenital heart defect that will lead to heart failure and death if untreated. Your attending tells you that no doctor in El Salvador has the skill or tools to perform the surgery Javier needs, so you should send him home with prayers. Your last preceptor in Charlottesville performed the surgery for this condition frequently.

Before your rotation began, you personally fundraised $7000 from friends and family so that you could invest in something worthwhile for the community where you are working. With this money you can fly the boy and his mom to the US to have the surgery. What choice do you make? How will you spend your money?

Someone with insurance in the US can easily have this surgery performed. Are you morally and ethically responsible to Javier, given that other children in his situation would die? Should he receive the same quality of care that your nephew in the US may receive? Using an ethical framework, is health care a human right?

Moderator: You Have the Right to Remain Uninformed

This case turned out to be less controversial and more informative, at least for me. I had never thought that anyone would NOT want to know the details of her care, but it happens more often than one might think.

Although there was some disagreement among commentators concerning hospital policy, we all agreed that Mrs. Z's right to make decisions about her own care extends to include a right to not make decisions about her own care. As Beauchamp and Childress put it, "Autonomous choice is a right, not a duty of patients." In delegating her right to choose to her son and the doctors, Mrs. Z has made her choice and this must therefore be respected. Autonomy does not override other bioethical considerations: it is but one among such principles as beneficence, nonmaleficence, and justice. Consideration of beneficence must also dictate what is ethical in this situation, and according to her son, forcing the information on Mrs. Z would be detrimental to her physical and emotional health, thus also violating the principle of nonmaleficence.

The hospital ethics committee's solution to this problem was convenient, but did not take any of this into account. Morally and ethically the decision to know or not know rests with the patient. Had they not found this loophole it is unclear how they would have handled the situation. Their chief concern was obviously legal, but if our current laws are so rigid as to force hospital administrators to undertake this level of fancy footwork just to respect a patient's wishes, then maybe its time to reevaluate how we think about/legislate patient autonomy. Traditional Russian families are not alone in diverging from the Western individualism inherent in our country's approach to healthcare and issues of consent. Ethnicity has been shown to be a primary factor in patient attitudes about autonomy and decision making. For example, one study cited by Beauchamp and Childress noted that "Korean Americans (35%) and Mexican Americans (48%) were less likely than African-Americans (63%) to believe that a patient should be told of a terminal prognosis and less likely to believe that the patient should make decisions about the use of life-supporting technology (28% vs 41% vs 60% and 65%)."

Work Cited
Beauchamp & Childress: Principles of Biomedical Ethics, ed 5, 2001. p. 62-63.

The Right to Uninformed Consent?

Mrs. Z is a widowed 70-year-old mentally competent Russian immigrant who lives independently in a suburb outside Washington, DC. Her doctor discovers that she has an operable tumor and has her admitted to the hospital for surgery. Because she does not speak English, her 45-year-old son Boris Z translates for her but adamantly refuses to tell her that she has cancer. He tells her only that she needs surgery, because he says that "it will destroy her" to know the truth. The surgeon and other staff members argue that she must be told why she needs surgery in order for them to obtain informed consent for the procedure, but Boris will not allow the hospital's Russian translator to enter Mrs. Z's room. Boris explains that in his culture, the man of the family (in this case, the eldest son) makes the decisions and that his mother is quite willing to have surgery without knowing what it is for. Indeed, Mrs. Z has shown no curiosity about the nature of her disease, and is willing to undergo the procedure simply because the doctor says she needs it. Boris is absolutely convinced that knowing the truth that she has cancer will be detrimental to her health and peace of mind, and continues to refuse to explain it to her. The Hospital Ethics Committee meets and decides to get around the issue of informed consent by having Mrs. Z. sign a form stating that she refuses the hospital's translating services and would prefer that her son be her translator. [Actual case- thanks to Steven S for bringing it to our attention]

Can someone forego the right to be informed? Should the hospital inform her anyway? What do you think of the Ethics Committee's solution? 

Moderator: At-Risk Home Birth: Whose Right Is It?

On the issue of high-risk home birth, the VCOM community members who commented on the blog were not in consensus. However, there does seem to be a strong contingent voicing support for the mother’s autonomy to make decisions about her delivery. Elective home births and non-hospital births (such as at a birthing center) are on the rise in the US. Most women who choose home birth rely on a trained birth attendant (such as a midwife) to help her deliver. There is a growing movement of women who choose not to utilize a birth attendant. In the literature, this is called “free birthing.” An opinion article was recently published in the Lancet on the ethical considerations of high-risk home birth, causing quite a stir in the home birthing community (see below).

In Virginia, there are laws governing midwives attending home births. A recent legislative attempt to prevent reimbursement to midwives attending high-risk deliveries did not make it out of committee. However, Del. Matt Lohr, R-Harrisonburg, has introduced a bill to the General Assembly that would require midwives to inform patients of the potential risks associated with delivering at home. The idea of the bill was brought to Lohr by an obstetrician and gynecologist in Harrisonburg, VA, who was concerned about the safety of high-risk home births. Lohr reports concern due to recent cases of midwives whose licenses were suspended by the Virginia Board of Medicine after they attended high-risk home births and the babies did not survive.

Thanks to everyone who joined the debate! Please keep it going in the comments section if you have more to say.

Read More
Home Birth—Proceed with Caution, The Lancet, 31 July 2010 (Vol. 376, Issue 9738, Pages 303). Full article here

Midwife legislation in Virginia
Sally Voth, “Legislation Would Impose New Rules on Midwives,” The Northern Virginia Daily, 17 February 2009. Full article here

"Free-birthing"
Madison Park, “Home Births: No drugs, no doctors, lots of controversy,” CNN, 09 August 2010. Full article here

High-Risk Home Birth: Whose Right Is It?

Mrs. R is a 39-year old woman who is three months pregnant with her first child (her age makes her “high-risk”). She would like to deliver the baby at her home with a midwife present. Mrs. R does not have any other significant risk factors for an unhealthy delivery. She lives 25 miles away from the nearest neonatal intensive care unit (NICU).

What kind of ethical issues are involved in this case? Should a midwife agree to attend Mrs. R’s home birth? What should a physician advise? Mrs. R believes she has a right to decide where and how to give birth. Does the baby have rights? Is legislation appropriate?

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