“Is your wife one of those people who will go along with it? Just sign him up for the surgery and you can go home and discuss it with her later.”
My husband had come to a prominent teaching hospital in Southern California affiliated with the Seventh Day Adventist faith seeking orthotic braces for our son. Instead, he was getting a hard sell for an experimental surgery. The surgeon was conducting a study on a procedure for certain hip problems and was looking for another subject in his study. My husband kept asking what the potential risks were with the procedure, but all the surgeon would say is that the procedure was “controversial”. (He was in full-blown authority mode too since he had medical students shadowing him.)
The surgeon kept pushing, but my husband didn’t feel good about the way the surgeon was refusing to disclose possible risks. We had worked so hard to get our son walking unassisted after being told that he never would and we knew that surgery is like getting a tattoo- you can never go back. (Sometimes that’s a good thing, like closing the lesion on the back of a spina bifida baby.) Ultimately, my husband left saying that he needed to do more research and talk to me before committing to anything.
That night we started researching medical journals and studies online and found out that while this surgery has shown some benefits for kids with cerebral palsy, it has no demonstrated benefits for kids with spina bifida and could potentially cause long-term damage to CJ’s ability to walk. We breathed a sigh of relief that we waited, did our research and got informed- even though the doctor neglected his responsibility to disclose the risks of the procedure.
Unfortunately, the orthopedic surgeon at said hospital refused to provide our son with the orthotics our son needed to maintain mobility. That started us on a nightmare of trying to get adequate orthotics for our son that we are still dealing with a year and a half later. But that’s another story.
I don’t think this surgeon (who would have made one helluva used car salesman) was thinking, ” Wow, I really want to screw this dad and his special needs kid over.” I think he was probably thinking something like “This kid isn’t going to have much mobility over the long-haul anyway. The surgery can’t be that damaging and I’ll get another subject to help further my research which will help other children.”
As parents, we chose our son’s mobility. Our son also wasn’t a good candidate and so we felt that including him in the trial wasn’t that beneficial to kids with CP anyway. But we were disturbed by the actions of the surgeon. It was like he had never heard of the term “bioethics”. (Is that some kind of sequel to the 1996 comedy Bio-Dome?)
Bioethics is the practice of ethics within the field of medicine and healthcare. The Center for Practical Bioethics says that bioethics is about asking the following questions: What is the right thing to do and the good way to be? What is worthwhile? What are our obligations to one another? Who is responsible, to whom and for what? What is the fitting response to this moral dilemma given the context in which it arises? On what moral grounds are such claims made?
Medical and public health issues tend to bring up a lot of sticky ethical situations about things like responsibilities, informed consent and conflicts of interest. And when you’re dealing with people’s lives- either in the immediate as a patient or loved one or on a broader scale in public health or an experimental procedure- it’s tempting to feel like the end justifies the means. For example:
A teenage boy died of organ failure from MRSA, but was also infected by influenza at the time. Is it ethical to present his case as an example of why people should get a flu shot when a flu shot would not have prevented the infection and spread of MRSA?
Parents who have received a diagnosis of spina bifida for their unborn child have a few weeks to enroll in a trial for prenatal surgery. The surgery may or may not improve their child’s function and carries a high risk of premature birth, but could add to the body of research on the procedure, potentially helping other children. The parents are in a state of shock, reeling from the diagnosis. Should the parents be encouraged to undergo the surgery?
How do we feel about Jonas Salk experimenting with flu vaccines on mental patients who could not consent to the experiments and could not give accurate feedback about the experiments? How about Joseph Goldberger causing pellagra in prison inmates to study the disease?
Do parents have a right to sue a care provider because their baby’s birth defect wasn’t detected until birth? Sonograms and prenatal testing are not guarantees of health.
Should we in the breastfeeding community tout gains in IQ as a primary benefit for breastfeeding when intelligence is actually a combination of many factors working together?
How reliable are studies that have been funded by a corporation or have been conducted by researchers who also receive consulting income from corporations?
A doctor is recommending a procedure or medication to a patient. The doctor thinks the procedure or medication will be highly beneficial. There are risks- but the doctor thinks the risks are very, very unlikely. Is it OK for a doctor to simply tell patient that the procedure is “safe” when there are risks? Driving a car and air travel are generally “safe”, but have risks.
Is it OK to allow pharmaceutical companies to advertise directly consumers? Pharmaceutical manufacturers stand to benefit from people asking their doctors for a particular medication- regardless of whether drug is useful or safe to consumers. This means that it’s in the pharmaceutical company’s interest not to focus on how a drug might not be effective or could have serious side effects. (Note, most developed countries do not allow this.)
The Charlie Gard case has (in my opinion) highlighted many different sides of bioethics. It shows the responsibilities and rights of parents, doctors and researchers. Who gets the last say about when to go off life support? When do experimental treatments create false hope? Should parents or doctors have more say in a child’s care? Who is a more reliable judge of what the child needs? Maybe that should be determined on a case-by-case basis?
Another recent case in ethics is USC’s former medical school dean Carmen Puliafito. Puliafito was only recently barred from seeing patients after the Los Angeles Times published an expose of his substance abuse and abusive behavior towards faculty and staff. However, USC had been receiving complaints for years about his heavy drinking- and still allowed him to see patients during that time. However, they have stated that they never had any complaints from patients.
Still, is it ethical to allow an intoxicated physician to care for patients? (Writing as a parent who has had to leave her hours old infant in the hands of surgeons and doctors and not knowing if they have had adequate sleep or are sober, I can tell you this kind of situation haunted my nightmares while my son was in the NICU.)
Sometimes there are inequities in knowledge between the care provider and the patient and/or parents. This is why we have informed consent:
Informed consent is the process by which the treating health care provider discloses appropriate information to a competent patient so that the patient may make a voluntary choice to accept or refuse treatment. (Appelbaum, 2007)1 It originates from the legal and ethical right the patient has to direct what happens to her body and from the ethical duty of the physician to involve the patient in her health care.
The surgeon who was pushing the experimental surgery had violated informed consent by refusing to disclose the risks to us. Though it was his responsibility to do that, we knew that as parents we had the responsibility to our son to make a decision that was informed. When we couldn’t get the information we needed from the surgeon, we went looking for it ourselves.
A conflict of interest, such as career advancement or funding should go into our decision about how reliable we gauge information to be. Doctors, scientists and everyone who works at a drug company are people. They have their own biases and they have their own agendas. This is why conflicts of interests have to be noted in a medical or science journal.
How Ethical Are We?
And bioethics should always be challenging. We humans have a tendency to think we are doing the right thing- especially if we think there will be a benefit for the greater good. But that altruistic bent can also lead us to do terrible things as well. The Nazi’s believed they were making the world a better place through ethnic cleansing. In the 1970’s doctors often refused care for infants with spina bifida because they felt that these children had so little possibility of any quality of life that letting them die quickly was the most merciful thing to do- despite the fact that treatment existed for the associated health problems with spina bifida.
Jonas Salk, Joseph Goldberg and their colleagues felt like testing vaccines and diets on inmates and mental patients was moral because they hoped to provide better disease prevention for the rest of society. And USC probably felt that the money Puliafito brought in for the medical school from fundraising outweighed the damage of his behavior. I personally believe it’s important to understand the belief system others are operating under- even if we don’t agree with it.
I think bioethics is everyone’s responsibility. Do your research, look for possible conflicts of interest. And always question yourself and others.