I had the good fortune of spending a woefully-insufficient amount of time with author Rebecca Skloot at ScienceOnline10 last weekend. Rebecca has worked for the last decade on a remarkable book which is being released next month, but thanks to a quick hand on the keyboard, an active twitter account, and a glass of Merlot (don’t ask) I have an advance copy. (I had already pre-ordered one, which I will likely give away in some sort of selfless act of tzedakah.)
The book is called The Immortal Life of Henrietta Lacks and documents one of the most important discoveries in modern biology and the people who made it possible—even when they didn’t know it.
Which brings me to the topic of this post. I haven’t finished the book yet, but it’s terribly hard to put down. I love non-fiction, and this is the best I’ve read in years, both from a content and style perspective. Rebecca’s prose is entirely engaging. Skloot manages to capture the humanity of the people involved in all its flawed glory. So far, there are no saints, no demons; just people.
One of the most engaging characters is medicine itself. Medicine has changed much over the decades, and medical ethics with it, but not always as much as we would like. The previous norm in medicine was paternalism, that is, the doctor was seen as the authority and the patient ceded their autonomy to the expert who presumably had the patient’s best interests at heart. It’s not that paternalism in medicine no longer exists (it must, really) but the pendulum has, well, not swung, but been pushed toward patient autonomy.
As part of the move towards the protection of patients and the preservation of their autonomy, we explicitly inform patients about their care—and ask permission. Of course, we don’t ask permission for every little decision in a patient’s care, but neither are we supposed to implement major changes without their explicit, informed consent. To accomplish a goal of balancing autonomy with other needs, we have patients sign general consents to treatment, and specific consents for treatments that are more dramatic, such as surgery. These consents should explicitly set out the risks and benefits of a procedure and should reference a more detailed conversation that you have had with a patient.
To be clear, the act of signing a consent form is not the same as granting consent. Signing the form is only part of the process, the most important part being the conversation with the patient. This is what honors the intent of “informed consent”.
While we have probably not reached the goal of a perfect partnership between patient and physician (!), we have made strides. Here is the text of the consent form signed by Henrietta Lacks (from the book) before treatment for her cancer, a treatment which left her infertile, unwell, and the mother of one of the most important tools in modern biology:
I hereby give consent to the staff of The Johns Hopkins
Hospital to perform any operative procedures and under
any anaesthetic either local or general that they may
deem necessary in the proper surgical care and
treatment of: ______________________________.
For the sake of comparison, here is the text of a more recent consent form:
A physician has provided the following information to me: the nature and benefits of the proposed procedure treatments; the consequences of non-treatment; the significant alternative treatments; the possible significant complications of the proposed procedures.
I voluntarily consent to the procedure as discussed with my physicians…I understand that associates, residents or assistants may participate in my case.
I realize that medicine is not an exact science and that all possible outcomes/complications cannot be anticipated and that no promises or guarantees have been made to me…
I have had the opportunity to ask questions and I have no further questions of my physician.
There are significant differences between these two documents, and between how they are ideally implemented. The most glaring difference is that the first document requires nothing from the health care providers, at least not explicitly. It is probably implied that they will give the best care that they can, but that is tied up in the context and the times. The second form lays out explicitly some of the responsibilities of the physicians and explicitly calls on the patient to provide questions about their own care.
Ms Lacks grew up on a tobacco farm and had a sixth grade education. She was black in a segregated city. She had no real choices about her care because of this context, and the physicians of the time were not likely to have worked hard to mitigate that—it was not part of their culture.
Today we may still fail to get true informed consent—we aren’t perfect. But we at least strive for a more transparent system in which patients and doctors have both rights and responsibilities.
This intimate look into the past of the doctor-patient relationship has the potential to help us continue to improve the ethical practice of medicine.
Thank you, Henrietta Lacks, for continuing to give of yourself in so many ways.