“I am appalled. The doctors don’t actually enter the room to examine the patient? They read the chart, full of lies and omissions, and look through the window. Well they can see a nice IV pole when they look in the window. I guess none of the dozens of nurses we’ve told about his face bothered to note in his chart, ‘Wife concerned about disappearing, bleeding face.’ This also explains his eyes. The doctors never bothered to look at the patient, and none of those nurses bothered to write, ‘Wife concerned about melting eyeballs.’"
While this book was not a pleasure to read, there was value in doing so, as a health care professional. It provides insight from the family’s point of view into how hospital care is provided, communicated, and coordinated. There is also value in this first-hand account of how dysfunctional family relationships can adversely impact the providers’ ability to communicate and coordinate care. Who should the health care providers talk to? Who can make medical decisions? Wife, mother, father, brother, sister, cousin? Girlfriend? Partner? Without a medical power of attorney, this became a vicious power struggle between family members that medical and hospital staff had to navigate.
Since the events of this book in 2003, the acceptance of “patient centered care” as an essential component of health care quality has grown tremendously, and many of the attitudes and barriers that the author encountered are actively addressed, but I have no doubt that patients and families still experience them. We should do better. We must do better.
This story also illustrates how impossible it can become to simply manage day-to-day responsibilities when a medical crisis strikes, and what a blessing small kindnesses can be. The author was moved to tears by these practical but unglamorous offers, to mow her lawn, to clean her pool, to babysit her children, a bag of groceries, a paid long-term parking pass for the visitors’ parking lot.
I’ll finish with these wise words from the author: “I probably don’t need to state the obvious, but at the very least, everyone needs to have a medical power of attorney. Something like this could happen to you at any time. As Americans, we think we have basic rights and authority. When my husband became incapacitated, so did our rights and so did my authority to protect him.”