A dear friend of mine (let’s call her Amanda) has metastatic breast cancer. She’s far outlived her life expectancy, thanks to advances in targeted chemotherapy, but is beginning to need more medical care. She’s the divorced mom of two teens, with a loving extended family who keeps a close eye on her.
When Amanda was recently admitted to her local hospital with abdominal pain, a new policy resulted in some unintended consequences. While she was still in the Emergency Department, a nurse came by to ask if Amanda wanted to be an organ donor. The family members – keenly aware of her grave prognosis – assumed that the nurse knew about the cancer, and was asking this question because it had been determined that Amanda was about to die.
Tearful sobs ensued. Amanda’s sister called me the next day to tell me the news.
Based on my knowledge of Amanda’s condition – and that she would almost certainly not qualify as an organ donor for any organ (being that she has metastases in many of them, has been on chemo for 7 years, and completed many rounds of radiation therapy), it suddenly dawned on me that the nurse must have simply been checking off a box on a list. I suspected that someone at the hospital had created a new policy where every patient who came through the ER was asked about their organ donation wishes. It was a new routine procedure… and probably well-meant.
But the generalized application of the policy is where the damage was done. Even though Amanda had been in and out of the same hospital for years, the impersonal nature of being asked such an obviously inappropriate question was emotionally devastating. At her most vulnerable hour – she was made to feel as if the vultures were gathering in plain view, wondering if they could have her organs.
I reassured Amanda and her family that the organ donation question was likely asked of all ER patients, and that I fully understood how it must have seemed (out of context) like a reflection on Amanda’s prognosis. I tried to comfort them – imagining what it must have felt like to be at the same academic hospital for the 100th time, without any glimmer of recognition on the part of the staff, nor any personalization of care.
I wish there were a way to humanize the hospital admissions process more effectively, but since hospitals are under extreme pressure to adhere to checklists and code-based quality measures for financial survival, personalized care is not the top priority. It is the rare patient who has a medical home to turn to in these times of need – with a primary care physician who can advocate on their behalf and facilitate their safe and emotionally sensitive care (which is what I try to do in my practice).
Sometimes I think that with all this talk of quality healthcare, it seems we’ve lost the most important one… the human quality.