Compassion [kuhm–pash-uhn]
noun
A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.
Compassion Corner is a weekly series from Patient Worthy that will focus on the subject of compassion in the healthcare and rare disease space. In this series, we explore the role of compassion in this field and what it means for caregivers, patients, and others.
According to a personal story written by journalist Taryn Hillin for the Huffington Post, she had an appointment with a new OBGYN in October 2019. The session was very unsatisfactory. The doctor discovered a two-centimeter tumor on her uterine cervix. The radiology report noted that the tumor was “of concern.”
Taryn was shocked and upset, but the doctor seemed unconcerned. She explained to Taryn that she was about to take some time off, her schedule was full, and she could not schedule a biopsy until she returned from vacation. When Taryn asked if another doctor could perform the biopsy in her absence, the doctor again emphasized that it could be fibroids or another benign growth so there was no rush. She said the biopsy would be put off for four weeks and she should just be patient.
Taryn admits that she was intimidated. After all, she thought, the doctor had been to medical school and she had not. What right did she have to dispute the doctor’s advice?
Taryn’s “Misdiagnosis”
Taryn felt so strongly for the need to act quickly that she called her old OB-GYN and arranged an emergency appointment. After an ultrasound and other tests, he sat down and explained with concern but kindness the results of the colposcopy, ultrasound, and biopsy.
After undergoing chemotherapy and a hastily-arranged operation to remove her fallopian tubes, multiple pelvic lymph nodes, uterus, ovaries, and cervix, Taryn wants to encourage others to speak openly to their doctors and take part in making decisions.
She also feels that she understands the pressure physicians are under to increase the number of patients they see. This in turn increases, among other things, the number of after-hour phone calls and attending to their patients’ electronic records. Due to their heavy workload, fifty-six percent of all primary care physicians spend less than sixteen minutes with a patient. In her report to Huffington Post, Taryn wants to be clear that she has no intention of vilifying doctors.
About the Test Results
Results of the biopsy showed that Taryn had high-grade small cell neuroendocrine cancer, a rare and very aggressive cancer. Her imaging indicated that it was local, meaning it had not spread (metastasized) to other areas in the body.
Even though they acted quickly, Taryn’s chances of survival at stage 3C were only 0% to 7%. The cancer is so aggressive that even at stage 1, the rate of survival is only 30%.
Taryn often thinks about her doctors performing all the tests in five days. She realizes that had she waited for her first OB-GYN to return from vacation, she probably would not be alive now.
Several weeks after her surgery, she received a call that the doctor had returned from vacation and they can set a date for the biopsy. Taryn was only able to blurt out that she was going to begin chemotherapy and emotionally ended the call.
Taryn has been free of cancer for two years. She is very aware that she is fortunate to be alive, and that the second OB-GYN spent one hour with her at the first visit. He listened to her carefully and performed many requisite tests immediately. He called her survival a miracle. She also recognizes that if she had postponed her treatment for four weeks as the first doctor recommended, it would have taken her life.
Where Women are Concerned
Taryn knows that she is fortunate to have been free of cancer for two years. Her oncologist calls it a miracle.
Many women are not as fortunate. They are underdiagnosed for cardiovascular disease, depression, and many forms of cancer. These women see multiple doctors and may not be given accurate diagnoses for well over a year.
Studies find that women tend to be easily dismissed and sent home with a diagnosis of period cramps instead of being tested for serious abdominal pain. The result is that conditions such as ovarian cysts or uterine fibroids can be left undiagnosed for years.
In fact, America’s ratings in this respect against other developed countries are dismal. It is estimated that on average, endometriosis is generally not diagnosed for six to ten years. The CDC reported that America is last in maternal mortality ratings against other equally developed nations. The death rate for Black women is worse. Women are misdiagnosed for cardiovascular disease about fifty percent more frequently than men.
Taryn’s advice to women in a similar position is to advocate for themselves. She agrees that doctors are mostly compassionate but also acknowledges that many are overworked, and under heavy workloads which can cause them to be dismissive of patients, especially if they are women.
She strongly urges women to demand tests even if they are labeled hysterical and overly dramatic. Taryn describes her initial period of preparing for the operation as pleading with imaging centers and labs for early appointments and sending emails to oncologists asking for help.
She reminds readers that “it is your life” so it is up to you to ruffle a few feathers because you are worth it.