Pathological Fracture: 50 Lessons from the Medical/Surgical Floor | Katharine A. Tillman
1. She’ll learn to flush her mother’s PICC line with a syringe of saline, and
2. To ask for necessary, doable exceptions from the rules over and over and over again, until someone in power accepts that they are necessary and doable and does them.
3. To force other people to go to a doctor when they’re sick, even if the co-pay is a lot, because it is far better to be bankrupt and healthy than sick and wealthy.
4. That if she is broke, but thinks she may wind up in a desperate health situation, she should find the very best insurance plan she can and put the premiums on a credit card. The out-of-pocket max is what matters.
5. To help her mother stand, sit, lean, listen, remember, forget, think, eat, drink, reach, rest, relax, walk, wash, dress, ask, and decide. To do these things nonstop all day without looking like she’s doing them nonstop all day.
6. That daughters concerned about their ability to be effective caretakers and advocates for their mothers in a catastrophe should have daughters of their own. A lot of the same instincts are involved.
7. That, someday, her daughter will be in the same position with respect to herself that she is in with her mother, and the face of death will change everything between them.
8. That one day’s worth of information given to an exhausted, heavily-medicated, terminally ill mother in a hospital translates to more than ten pages of notes, when rapidly written down by a highly-educated and experienced note-taker.
9. That she can always ask her nurse all about her family or hobbies or make-up or favorite restaurant or anything other than what she’s doing to her right now.
10. That falling down isn’t the only way to break a bone. Before asking a stranger in a sling what happened, consider the possibility that they have been asked this question ten times that day, and that the answer is cancer.
11. That organization junkies should consider careers in medicine.
Figure 1. Medical supplies organized neatly. Photo courtesy of the author.
12. That something as small as a YouTube video of a man mispronouncing “fresh avocado” can lighten the burden of a terminal diagnosis.
13. That if someone shows her how to do something medical, like flushing a PICC line, she should record a video on her phone for future reference. If someone shows her an x-ray, she should take a picture. She should ask for a copy of everything, all the time, and she should keep asking until she gets it.
14. That if a health situation is desperate enough, there are a lot of avenues for help, even in America, even after 2016. But pursuing them requires a level of persistence and knowledge and time that people in desperate health situations can rarely muster. The horrifying part is that this may be intentional.
15. That there aren’t really 10 points on the Ten Point Pain Scale. There are 3: Mild, Moderate, and Severe. If her pain is Severe, and she needs the most her doctor will give her, as soon as possible, to even begin to handle it, she needs to say 8 or higher. If her pain is Moderate, and she needs something now but not necessarily the most she can possibly have, she needs to say 6 or higher. If she’s not sure if it’s Moderate or Severe, she should say 7, and different nurses will interpret this differently. If her pain is Mild, and some drugs would be nice but she could handle her pain without them, she should get the hell out of the hospital and stop distracting the nurses who are trying to get the drugs to the people whose pain won’t ever go below a 6 no matter how much they get.
16. Insurance companies are now reluctant to pay for morphine and doctors are now reluctant to prescribe it. The cancer patients who need it for their pain are given methadone now, just like heroin addicts, and these patients are the hidden victims of the opioid crisis.
17. That, at 2 am, the corridors on Med/Surg 4 are filled with more pocketable goodies in unwatched carts than the hallways of the Ritz.
18. That having a human humerus in her bag to pull out when a visual aid is needed will make everyone on the orthopedic surgery team love her.
19. That, after PICC lines and pathologic fractures and palliative care and metastatic tumors stop making her nervous out of necessity, they become the most fascinating things in the world. Her mother may have been right all along about how she really should’ve gone to med school.
20. That when very bad things start to happen, small, good, magical things start to happen too. She can get free pizza three days in a row just by calling in her order at the restaurant’s busiest time.
21. That putting a ponytail in someone’s hair exactly the way she wants it – right on the top, four and a half loops around, not too loose! OW! FUCK! – is more difficult than flushing a PICC line.
22. That all those mundane tasks people say she shouldn’t worry about in the midst of a life-or-death situation – work, cleaning, taking care of her skin, organizing everything she can get her hands on – are actually very therapeutic.
23. That there are times she can cry and times she can’t cry. She is in complete control of the when and where.
24. That when her mother is in surgery, and she’s alone in Room 32, she’s finally allowed to cry. She can sob, and sob, and sob. But then she will be able to sit down on the couch bed and calmly write a paper until the surgeon calls.
Figure 2. A late-night view from the hallway of Med/Surg Floor 4. Photo courtesy of the author.
25. That writing applications for SSI and SSDI and Medicaid and Medicare and state financial assistance and hospital financial assistance and drug company financial assistance and Cancer Center financial assistance is more difficult than writing a scientific paper.
26. That, if $153-an-ounce La Mer moisturizing lotion is the only thing that helps her skin feel better while she’s stuck in a hospital, dried out and hearing bad news every day, she should just put it on a credit card, because her health matters more than money. Health matters more than money even when you don’t have either.
27. That, in real life, when they call a code in the middle of the night, doctors don’t always come running down the halls.
28. That, sometimes, when the Rapid Response Team is summoned over the intercom, nurses in green scrubs will gather, standing there waiting by the bed while a surgeon in blue takes his time walking down the hall, looking at his phone.
29. That, when she peeks into room 36 from 32, trying to look like she’s not looking, she’ll see that a man is in the bed, without seeing the man in the bed.
30. That all the people standing around the bed, running the code, look perfectly calm.
31. That they are “ de-escalating the situation.”
32. That, when she can’t watch them call her mother a hard stick, a terrible stick, an impossible stick anymore, in order to stop them from taking the PICC line away, she can and will learn to take care of it by herself.
Figure 3. Peripherally inserted central catheter (PICC) line. Photo courtesy of the author.
33. To have positive thoughts while flushing the PICC, just like the charge nurse taught her: The syringe will push down smoothly and easily. There will be beautiful blood return.
34. That the PICC goes into her mother’s arm like an IV, but reaches all the way up into her heart.
35. That she will not let her mother’s blood spill out of her heart and all over the floor.
36. That practicing yoga is what helps the charge nurse de-escalate a situation quickly, and that according to her, that is why she’s the one in charge.
37. That throughout the code she will ask herself: Will the man in 36 breathe or not breathe? Will his heart beat or not beat? Breathe or not breathe? Beat or not beat?
Figure 4. Visitor’s bed by the hospital room window. Photo courtesy of the author.
38. That the morning after the man in 36 codes, he will be gone, but the door to 36 will still be open, and his clothing will still be on the floor.
39. That the day after that, two fresh towels will be balanced on the ledge of the couch-bed, folded into kissing origami swans.
40. That, according to the charge nurse, new admissions always say the swans look like something from a cruise ship. “ Oh, honey,” she says to them, “ this is no cruise.”
41. That although every day she wants to ask if the man from 36 is up in the ICU, or if he isn’t, she knows she cannot ask, and they cannot tell.
42. That if her mother’s heart stops, or she stops breathing, they shouldn’t call the code. If they try to run the code, her duty is to stop them. Her mother has a DNR and an Advance Directive, and she needs to be prepared to remind the doctors of her mother’s choice at the critical time. She needs to be prepared to enforce it.
43. That she is the one who can’t let them put a tube down her mother’s throat. She is the one who can’t let them give her those ICU drugs that made her believe her nightmares were all real. When her mother says she can’t ever go through that again, it’s her daughter’s job to make sure she won’t have to.
44. That it takes just as much strength to make sure a mother is allowed to die on her own terms as it takes to help her (want to) survive.
45. That sometimes the most compassionate doctors are the ones who recommend the fewest treatments.
46. That many people think the word “cute” is appropriate to describe a daughter pushing her possibly-dying mother down the halls of Med/Surg 4 in a wheelchair.
47. That one day she may be asked to give her mother an overdose, and that if and when that happens, she will say yes, and she will mean it.
48. “Only,” she says, “we have to make sure I can’t get charged with murder. That wouldn’t be good for my life.”
49. “It wouldn’t be good for your daughter,” her mother says.
50. That even though she has always loved her daughter more than her daughter loves her, this may even out eventually, even if it doesn’t happen until the end of her life.
Notes on contributor
Katharine Tillman is an Assistant Professor of Psychology at The University of Texas at Austin and Principal Investigator of Austin Thought Lab. Her work, which concerns language, perception, and the development of abstract concepts in children, has been published in Developmental Science, Cognitive Psychology, and Nature Neuroscience, among others.