Don't Be Sick in a Hospital!

By Janis Prince Inniss

When my mother was diagnosed with cancer, I reeled for a moment and then took her lead and focused on her healing. My husband and I invited her to stay with us after the surgery to remove the malignant tumor. A relative reminded me that attempting to do all of the care taking myself would be emotionally and physically costly, so I got information about the kinds of assistance available and the attendant costs. I was ready! 

I thought that while she was in the hospital, I would visit Mum and that would be the ”easy part”—for me. When she came home, I would hire an aide to care for her while I went to work and we would excitedly share our days when I came home: She would tell me about the progress she had made, and I would tell her about the world “out there”. 

Clearly, I was operating under the impression that the primary role of the sick person is to be taken care of and get well. Sociologist Talcott Parsons defined the sick person’s role this way: 

1. Sick people are absolved of blame for their illness. 

2. Sick people are excused from “normal” social responsibilities, for example, being responsible for their own care. 

3. Under the direction of medical personnel, the sick person does her part to regain her health (following recommendations regarding diet, exercise, and medications, for example).

The staff at the hospital where my mother’s surgery was performed must not have read Parsons, though. Many did not behave as though they were responsible for her care. The experiences my mother and I had at the hospital showed me that some people rigidly adhere to their defined roles no matter what the circumstances and others do not. It also suggested that some people who work regularly with the sick forget that the role of the sick person is to be taken care of and to get better.

The first sign of trouble was apparent the day I went to visit Mum after surgery. After my initial alarm at being told that she would be in the Intensive Care Unit (ICU) for her first night, I took solace in her surgeon’s words that she would have better care there because the nurse to patient ratio was about 1:1—much better than the 8:1 ration on the regular nursing floors. 

I introduced myself to the nurse taking care of Mum, and we exchanged telephone numbers. I called at 4 a.m., 7 a.m., 8:30 a.m., 8:40 a.m. and then at 10 a.m. Thankful that she was “doing fine” each time, and comforted by the knowledge that she was receiving individualized care, I used the opportunity to get some much needed rest. When I bounded into Mum’s room at about noon to find her lips chapped and to learn from her that she had watched the clock for the four hours between 2 and 6 a.m. wishing for a drop of water, I was devastated. She had tried to call for assistance but with a Nasogastric tube down her throat, an oxygen tube in her nose, and just being out of surgery, her voice was faint. 

She had no idea that there was a button on her bed to summon the nurse. Quickly, I got her some ice chips and felt better when her new nurse came in and was particularly attentive. Maybe Mum was mistaken about how long she was awake without the nurse checking on her…but what explained her chapped lips? 

I tried not to worry about Mum’s move to the nursing floor. I reasoned that she would be stronger, and that because I would show her how to summon help, she would be fine. Indeed, I showed her the controls that would raise and lower her bed, control her lights and television, and call a nurse. 

But calling a nurse did not produce one. Mum’s surgeon told her that she should walk two or three times each day, but she was too weak to walk by herself. In her two week hospital stay, with only two exceptions, if I did not take her for a walk she remained in bed—or sitting in a chair. (While sitting up was important, sometimes she would be stuck in the chair, wanting to go back to bed but unable to get someone to help her do so). 

If I did not ask for her to be given a sponge bath each day, it did not happen. On her first day on the floor, upon my request she was given a cup of ice; her nurse pointed out the cup with ice to Mum—on a side table completely out of Mum’s reach! If I did not replenish her ice chips—the only thing she could have for more than a week—she would have none. 

When my mother could get up to go the bathroom, she was told to call the nurse before doing so because she was still receiving intravenous (IV) therapy and was connected to a pole. Her chart also indicated that she was considered a “fall risk”. (And by this time she had not eaten solid food for more than 12 days!) That evening she called her nurse three times in about 30 minutes, but no one responded. Desperate, she went by herself to the bathroom and fortunately did not fall. Another evening she waited for almost two hours for anti-nausea medicine to be administered.

The nursing shortage in the U.S. is well documented and surely accounts for some of my mother’s experiences. However, the rare nurses and other caregivers who were responsive are examples of what is possible, despite system-wide failures and problems. (Mum was stunned to learn that one particularly attentive woman was a nurse and not a “tech” because of the amount of time she spent with her and because she performed such low skill tasks as walking and bathing her.) 

We learned that the various caregivers had very specific roles: nurses administer medications, technicians bathe patients and change linens, and aides check vital signs. Asking any of them to step out of their assigned role was usually an exercise in futility—they experienced no role confusion. 

Although I thought that my role would be that of hospital visitor (I would sit and chat with Mum, bring her flowers, catch up on some writing), I assumed a caregiver role so that I could respond to her unmet needs. Since the hospital staff did not respond to her requests for assistance, mum was forced to give up her “sick role” (as defined by Parsons) and try to take care of herself. Perhaps care is one of the casualties of our over-burdened health care system; the “sick role” may soon become a luxury few will be able to take on, even temporarily. Is the “sick role” headed for extinction?

Comments

[health coaching]

I am truly sorry to hear about your mom, we to have experienced a loss to cancer, and it was very very heart breaking.
I believe things could have been a lot better if she had real health insurance.
Our healthcare system is falling apart, but as a health advocate I am assured a job as medical industries are in high demand always. Many poeple these days are utilizing
medical call center and telephone triage services to skirt high medical costs. A nurse line combined with certified nurse triage practicioners is a great alternative to going to the ER and being charged those astronimcal fees.

[health advocate]

I have always gone to Call a Nurse for all of my health concerns. Whenever I have a question I call Call a Nurse and they are always very polite and knowledgeable. It saves me allot of stress by calling them at anytime 24/7 with my problems.

[Erica Roseland]

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[Laura Toussaint]

Dear Janice,
I am so sorry to hear about your experience but very happy to read in one of your other posts on social rituals that your mom recovered and reached a major milestone with her 80th birthday. My family went through the same thing when my mom had to have emergency surgery and ended up staying a total of 32 days in the hospital due to 3 hospital-related infections and a second return to the hospital after a premature release(they expected her to go home and eat and drink normally after being on ivs for 3 weeks!) The hospital staff where my mom stayed told her the exact same thing your mom was told- not to get up by herself, yet when she called they didn't come! Like you, I found myself in the caregiver position and ended up taking emergency leave off work so I could stay there with her at night to help her when she needed to get up or needed water. I was grateful to be with her but saddened at the lack of care she was receiving and scared that by doing the caregiving myself without any medical training, I would accidently hurt her. I knew that our health care system had a lot to be desired before this experience, but I was shocked at the lack of attention patients are given, especially since the consequences could be life-threatening when dealing with vulnerable patients like our mothers. Happily, my mom is recovering like yours! I just wanted to reach out from one daughter/sociologist to another and tell you how much your post resonated with me. I hope we can change our health care system so nobody else has to experience what our families did.

[Morgan Humble]

My heart broke as I read your post, dear. It's painful enough to lose a loved one, it's even more painful when you know realized they did not receive the care you expected them to have. The lack of nurses is indeed a crisis, as many hospitals are forced to hire foreigners to make up the numbers, This is good, but it's an expensive endeavor. It's a good thing your mom has you. You might as well be her nurse.