Abstract
“But I don't want to go among mad people,” Alice remarked.
“Oh, you can't help that,” said the Cat: “We're all mad here. I'm mad. You're mad.”
“How do you know I'm mad?” said Alice.
“You must be,” said the Cat, “or you wouldn't have come here.”
I
Experience from my (JTB) recent fellowship training program has given this term a new meaning. Full credit for naming this phenomenon must be given to one of our palliative care attendings and coauthor of this piece (ANG). Dr. Galanos paused one day on rounds after we left a patient's room and simply said, “She is in medical purgatory.” The entourage must have looked at him quizzingly because he continued, “She cannot get well enough on her own and with our support, we won't let her succumb.”
This was my second week as a fellow on the palliative care consult service. We had just exited the room of a 37-year-old woman admitted with dyspnea and severe back pain due to breast cancer that was widely metastatic to her lungs, pleural space, bones, and retroperitoneal lymph nodes. Oh, we must not forget to mention, she also had a left ventricular assist device (LVAD). How did she get to this place?
Since none of us are very good at predicting the future, we have all probably travelled this road to medical purgatory. We have traversed this path either as a personal journey or as a guide with patients and family members under our care. Our young woman with breast cancer arrived here by following the rules of the road, seeking the best of medical opinions, choosing options that were reasonable, receiving excellent care, and encountering surprises that were not predictable. She travelled this road with her family and with her medical team picking up additional passengers along the way. Our team, Palliative Care, was the last group to hop on the bus.
Five years before we met her she was diagnosed with invasive carcinoma of her left breast. Standard chemotherapy (doxorubicin/cyclophosphamide followed by paclitaxel) was recommended and she finished this with few bumps along the way. The chemotherapy was followed by surgery, and more predictive signposts appeared along her road: clinical stage T1, N1, M0, ER/PR positive, HER2 neu negative/pathologic stage T1c, N2, M0. After recovering from surgery her journey included local radiation to the breast and she completed this with minimal breast erythema and skin reaction. Finally, the road seemed clear of all apparent obstacles and she was started on tamoxifen, the part of the journey that should have been the easiest.
Two years following the chemotherapy, the surgery, and the radiation, her journey arrived in an unexpected place. Hospitalized with acute pulmonary edema, she was found to have a nonischemic cardiomyopathy (ejection fraction by echocardiogram <15%). The doxorubicin was thought to be the most likely culprit. Fortunately, she responded well to standard medical management of her heart failure, and her journey continued uneventfully for the next year.
One year later, three years following the initial diagnosis of breast cancer, she again found herself in the hospital with heart failure symptoms. This time the echocardiogram showed worsening left ventricular function and a right heart catheterization revealed that her cardiac index was extremely low. She was introduced to the intravenous ionotropic agent milrinone, and her journey continued.
This time it was not long before she recognized the all too familiar road signs of heart failure and was again admitted with pulmonary edema despite the intravenous inotrope. A thorough search for any evidence of breast cancer was unrevealing and she was felt to be a candidate for an LVAD as a bridge to cardiac transplantation—but only if she remained cancer free for five years. Who would not want to navigate that bridge given the severity of her heart disease? She chose to cross that bridge and the journey continued with several new passengers, the transplant team, and new baggage, her LVAD.
Eight months later, just 60 days before the magic five-year mark would declare her cancer-free and eligible for a heart transplant, she was admitted with back pain, leg weakness, and urinary incontinence. Scans showed cord compression which proved to be from recurrent breast cancer. It was then that the wheels started falling off the bus.
It was not long before metastatic disease was found in several bones, retroperitoneal lymph nodes, and her chest. Palliative radiation therapy helped initially but she never regained functional status to tolerate further systemic chemotherapy. All on the team agreed, this location was filled with suffering. Although this destination was awful, she and her family as well as her health care team would not have missed the journey.
In the ensuing months we have seen many patients and families in medical purgatory. It is a real earthly place of suffering. It is easy to place blame on the medical teams for directing their patients to this place. It is also easy to blame the patients and their families for “choosing” what can appear futile interventions. Rather than being a destination filled with blame, medical purgatory should be recognized as a destination we find after making rational decisions. Recognizing this makes it easier to find a path to relieve this suffering. For our patient, that path involved hours of family meetings, multiple conferences with all members of the team, and finally turning off her LVAD with family and friends humming spirituals at her bedside while her privileged travelling companions stood quietly by. You see, you cannot leave purgatory unless you get well or unless you turn off the vehicle that is keeping you there.