Morte

  ** Names and details have been changed to protect patient confidentiality, privacy, and dignity **

 

Simone, a 15 year old patient with sickle-cell anemia walked into the specialty clinic today. She was not yet due for a follow-up, but her condition had changed. She was now 2 months pregnant.

As I performed the history and physical, critical thoughts ran through my mind. "What was she thinking? Teenage mothers are already at increased risk for premature birth, hypertension, and low birth weight. The additional burden of sickle-cell anemia may prove fatal for mother or baby. How did this happen?" I worked hard to remain non-judgmental, and tried to focus my interview to pertinent health issues.

After discussing the situation with a colleague, I came away with a different point of view. I expressed my worries of the teen mother and child. He coyly asked me to remind him of the life expectancy of patients with SCA. Based on current statistics, most never reach the age of 50. I immediately realized my error.

Considering this young woman's life, she has most likely had several bitter tastes of mortality. Living with sickle-cell anemia has probably brought her to many emergency departments due to "pain crises"-- severe pain in her extremities, abdomen, and chest caused by the stiff, sharp edges of her red blood cells occluding her delicate capillaries. She may have developed gallstones in her short lifetime, and may already experience declining kidney function. The threats of blindness, heart attacks, and strokes remain with her. Young Simone will probably endure numerous surgeries to save her organs, with lengthened post-op recovery time.

As I began to delve more deeply into Simone's situation, the picture broadened. As a young black female in an urban southern city, chances are that she has known victims of violent crime. She may have buried classmates, neighbors, and relatives by this point. She is also most likely bombarded with images of mortality on a daily basis; bleak news reports of war casualties, drowning victims, suicide bombers, celebrity overdoses, murder-suicides, bizarre accidents can all take their toll. In fact, it is quite challenging to open a news web page without viewing an article involving death. Simone may feel the underlying need to experience as much life as possible before she passes on. 

Perhaps this issue is not limited to young sickle-cell anemia patients. Perhaps the idea of impending mortality is pervasive among all young adults. Graphic media coverage of the Columbine shootings, the 9/11/01 attacks, Hurricane Katrina, the Haiti earthquake, Osama bin Laden's death emphasize the fragility of human life, and drive the urgency to live life to the fullest. Like Simone, young people may subconsciously strive to become adults prematurely and experience as much as possible, pressured by impending doom. 

How can I best inspire these patients? Is there any way to infuse hope? 

Death twitches my ear. 
''Live,'' he says, ''for I am coming."

- Virgil

Birthrights

  ** Names and details have been changed to protect patient confidentiality, privacy, and dignity ** 

Yesterday, the Associated Press published a story (here) regarding a 21 year old pregnant woman, "P" in London who has "a significant learning disability" and whose mother has petitioned the court to have a tubal ligation performed after delivering her child. P's mother fears that, since she is already raising 1 child, P will continue to have children, and the state will take custody. Coincidentally, one of my recent patients had similar circumstances.

My patient's name was Casey. Casey is a 16 yr old female with borderline MR (IQ of about 65). Every few months, Casey's mother brings her to the doctor for "vaccinations"; also known as Depo-Provera. Both my attending and her mother have hidden the fact that she is on birth control. Casey engages in frequent "high risk" sexual activity (multiple partners, short-term relationships, little to no condom/contraceptive use), and does not wish to amend her behavior.

My knee-jerk reaction to this was one of shock, having been steeped in the newer philosophies of patient autonomy and women's reproductive rights. However, like most issues in medicine, there are always multiple angles.

What if, instead of birth control, Casey was receiving injections of olanzapine (antipsychotic for schizophrenia) or lacosamide (antiepileptic for seizure control)? What if Casey didn't have MR, but a medical condition that would severely jeopardize her life if the pregnancy were to continue? What if Casey had severe MR instead of mild? What if Casey is being sexually abused or manipulated? Would these circumstances change the approach? Is Casey's health better protected by giving her birth control? Should she have the right to conceive a baby, even if she has a history of irresponsible behavior?

On the most extreme level, some physicians and parents choose to create "pillow angels"; the most famous being Ashley (read her story here), who was born with severe physical and cognitive disabilities and was given high doses of estrogen in order to retard her growth and prevent menstruation. Ashley also received a hysterectomy and breast bud removal to keep her at a prepubescent stage of development. Ashley is thought to have an infantile mental capacity, and will not improve. Was this the right decision? Where should the line be drawn?

I have read multiple arguments from physicians on both sides of the issue. Some claim that the patient should be the ultimate stewards of their bodies, while others hold the guardian as the decision-maker. In medicine, I have come to learn that most ethical decisions cannot be determined by blanket protocol. Casey, Ashley, and P are all individuals, and what is right for Casey and her family may not be appropriate for P. Maybe Ashley is living a more fulfilled life than she would have as a fully developed woman. Perhaps an IUD would be a more ideal option for P. Perhaps Casey may choose to plan for a family as she gets older and more stable. I pray that the physicians supervising the care of these women consider the options, and treat the patients for their own good.

And what would I do if a patient came into my clinic with a similar conundrum? I really can't say.