December 2013 VOL 4, NO 6

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The Patient's Voice

The Devil Is in the Details

MMA 

If I had to grade my oncology nurses, I would give them, as a group, an A+. They have saved my life, cleaned my privates, kept me company, rejoiced with me when I was discharged, and consoled me with every wave or trickle of bad news I have faced during my care.

Yet, the devil is in the details. There are some things they have not done, that I need them to do. I do not know enough about hospital administration and organization to know if these tasks fall to them, but the nurses are there in my room more often than anyone except my family—and I expect the nurses to do them.

Help with my toenails. Admittedly, my toenails have always resembled dinosaur claws rather than human nails. Yet, since being told about a year ago I could not get a pedicure, they have deteriorated to thick, yellowish, nonmammalian entities. They hurt. I tell my nurse. “Get a file,” she tells me. Well, I cannot. I do not know enough about pedicure procedures, I do not have the energy to do anything and I am in constant pain. Why can’t my nurse simply call someone to help me? Why do they always give me some unhelpful suggestion and then never mention it again? Perhaps I have not been proactive enough. Perhaps I need to bring this up with the doctor. Yet, justified or not, I blame the nurses for not helping me. My suggestion? Look at the feet of your patients and ask them if they need help with their toenails! Find a solution! Please!

Clean out the apparatus from my bathroom. Every time I want to take a shower at the hospital, I find myself confronted with chemo poles, bedside commodes, and other assorted paraphernalia stuffed in the bathroom, usually in the shower stall. Has no one noticed that maybe, just maybe, a patient cannot take a shower with all that junk dumped in the shower stall? Do you take a shower at your own house surrounded by heavy metal that you cannot move easily? Please make sure it is out of there before I need to take my shower. To me, when you do not, it suggests that no one really cares.

Place my chemo pole so I can easily access the restroom. In my case, bathroom functions dominate my hospital stays. I am given medicine to either make me urinate or make me have endless bowel movements. I find it embarrassing and humiliating. Worse yet, many times I do not make it to the restroom in time, instead having accidents on the floor. While sometimes this problem is solved when I am told to use the bedside commode, it is still often the case that I just do not arrive. Why? I would estimate that 90% of the time it is because of 2 factors: one, I cannot get the chemo pole to wheel over the bump that leads to the bathroom, or, two, I cannot disconnect the cord from the wall and wrap it up in time to grab the chemo pole, navigate the door opening to the bathroom, get over that hump, and get to the toilet. I consider that a nurse could easily accommodate the equipment in a way that would reduce these incidents.

Clean up after my vomiting/diarrhea episodes. Do you know what it is like to be vomiting, for hours on end, sometimes intermittently, sometimes in retching fits? Do you know how humiliating it is to not be able to control your bowel movements, and instead to dirty yourself time and time again? Do you know that most of the people who are caregivers for us are not trained in the medical field? Do you know that, as far as I know, it is not my caregiver’s job to do yours. Do not expect my caregiver to clean up my mess! You need to do it! You are trained in the art of care. Please use that training. Come quickly! Help me! Please clean up! I need you to do it!

Make sure I have some way to wash my hands. Oftentimes, I use the bedside commode. I do my business, get up, and look around for a way to wash my hands. No one is in the room, I am too weak to walk to the bathroom, and apart from the toilet paper tucked on my chemo pole (if someone has remembered to put it there), there is no sign of anything to even clean my hands. So, I transfer back to my bed, aware that if I eat or sleep or anything else I run the risk of contaminating myself with excrement bacteria. All a nurse has to do is make sure I have wipe cloths, hand sanitizer, or some other way to keep myself clean.

It was hard to write this article. It seems sacrilegious to criticize the oncology nurses who have given me so much and cared for me through the course of this illness. However, all job performance can be improved. Nurses may not even be aware that, from a patient’s point of view, sometimes the devil is in the details.

MMA is undergoing treatment for cancer. She wishes to use her initials.

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