Patient Advocacy Q&A
I had such a compelling interview with this patient, and I just feel that a Q & A format would best capture her insight. Please note that these quotes are edited for clarity but the intention is preserved to the best of my ability. I have also taken some creative liberty with punctuation. Moreover, these questions and answers are just snippets from the full interview. Lastly, while I have included the patient’s background and experiences, identifying information has been removed to preserve anonymity.
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Q: Would you be able to share some of your experiences within healthcare?
“I’m happy that you’re asking me because I am definitely ensconced in patient advocacy in the healthcare system, and I’ve been a registered nurse for 50 plus years now. For 32 years, I was in acute care as a staff member on a medical surgical unit in the hospital, which was primarily orthopedics. I was involved in a lot of pretty intense work with getting patients pre and post-op after surgery, plus working with a lot of geriatrics. Then, I transitioned to school nursing. I spent a year and a half extra beyond my bachelor’s degree to get a school nurse certification. My 17 years as a school nurse were mostly spent in the elementary level, which was pre-K through 6th grade, and also involved special needs students.
I’ve also been a patient advocate. Whenever my friends or relatives go into a hospital or go for a procedure, I pretty much am happy to be there with them to be their advocate. I’m like their assistant to help communicate to the healthcare providers, whether it be the physician, the nurses, the anesthesiologists, all that. Now, I’m happy to be a liaison since I am officially retired from paid employment.”
Q: I’m curious if you can tell me what patient advocacy is like? I know you gave an overarching description, but can you expand on any specific moments you remember?
“I’ll give you a little history. When I first started nursing on a patient unit, I started as an ICU nurse for about a year and a half, and then I worked on a med-surg mostly because of the scheduling. I wanted to switch to a day shift, so I found an opening. From there, I was able to transition to adult and geriatric acute care. Anyway, I’ve been through many systems and types of work on the hospital units. In the past, about 20-30 years ago (sounds ancient, right?), there used to be something called team nursing. Things were kind of archaic. Believe it or not, we’d have like four or five patients in one room and curtains between them. That’s even before the days when gloves were used. There was a time when I used gloves and a really cost-conscious manager wrote me up for using gloves on a patient that had pretty icky wounds. Now, of course, it’s totally opposite. I’m very pleased that one of the things that are basic for nurses is hand hygiene and just following the rules of microbiology. You know, to prevent what they call nosocomial infections. Nursing 101 is trying to keep the patient safe and maintain health through prevention of further illness. Any breach of allowing or promoting patient well-being is going to most likely cause the patient to decline in health. I know this is going above and beyond just simple advocacy, but patient well-being is critical. We all have to pay the cost involved in getting a patient to recover from something caused by poor care in the healthcare environment.”
Q: When did you see that shift when people really started to put a focus on sanitation and hygiene within the healthcare setting?
“Well, even with Florence Nightingale in the Crimean War, nurses have been looking to keep the environment clean. Thinking back to situations I’ve been in through the 70s and 80s… nurses have always said, you know, like physicians were in a hurry. When they run into a room, especially one with, say, a patient with an autoimmune disease or a highly contagious illness, they should be gowning and gloving. It’s a procedure, and it has to be done in order for either the patient to not decline in their health or to prevent other people from getting sick. I’ve had experiences when I’ve had to ask the physician to wash their hands, put on gloves, or put on a mask. We have to stop people from rushing through the procedure because, in the long run, they might exacerbate or spread illnesses.
I’m going to say in probably the mid-late 80s or 90s, we started seeing hand sanitizers become more prevalent. It’s a good thing that people are more cognizant of where they put their hands and what happens after they touch something that’s contaminated. I also think that there’s been an extreme vigilance of hand cleanliness since COVID.”
Q: Did you ever feel that hospitals were not keeping the well-being of the patient as a priority? What have you been able to do in order to ensure that patient care is emphasized?
“I’m going back to the late 80s-mid 90s, there was a major merging of hospitals as corporate entities. Instead of just a board of one hospital, they expanded to the point where it seemed like the governing bodies were so removed. It seemed like the point of care to the people didn’t matter. Also, I want to be clear that I’m talking about the corporate sponsor, where they’re more interested in the shareholder making profits.
As nurses, we wanted to have the ability to maintain quality care so that the patient gets better. Nurses are interested in patients before profits. One thing that is extraordinarily important, which is a major factor in the quality of care is the staffing. In 1982, the hospital where I worked plus other local hospitals had become unionized. One of the major things about the reason for the nurses unionizing was that we felt we were losing control of our ability in keeping patients safe. There were several other major factors as well. When you unionize, you’re able to negotiate with the managers, the administrators. You’re able to negotiate wages, hours, and working conditions. Nurses would meet on their own time, even on their days off (because you work weekends so you get days off in between). It took about 10 years, I would say, before we were able to negotiate with management on our paid time. Now, we have collective bargaining. They are making stands and trying to instill legislation in states and at the national level for standardized staffing. Proper staffing really helps because it’s easier to pay attention to changes and any slight nuances that occur in patients’ conditions. If they’re ignored, which is more likely to accidentally happen when we’re short-staffed, the patient can get worse and mistakes can happen.
In California, about 20 years ago, they were able to legislate and initiate a standard of care where every hospital had to have a certain number of registered nurses caring for, say, 4 or 5 patients. I know it sounds kind of vague to say that number of patients, but it’s better than nothing. When I was working in a hospital, sometimes I would have as many as 10-11 patients. [...] The role of the nurse is to enhance the patient’s health. Both before and after surgery, knowledge is power for the patient. If they know what to expect, then they can have a better post-operative and get out of the hospital sooner because they were able to cooperate with the care plan. If we don’t have enough nurses, then the patients aren’t getting this. Nurses can’t be in all places at once, and it’s this understaffing that causes nurses to leave the profession. It’s unfortunate because it’s a caring profession.
I’m a volunteer with National Nurses United. That’s the nurses’ union that started out in California. I think they formed 20 ish years ago, which is when I became aware of them. They’ve made huge strides out in California. California is the only state in the nation that has a staffing standard. Other states have come close to this, where they’ll say that there’ll be a committee of nurses that can determine the needs with the management, but it’s all very vague.”
I’ve subscribed to the American Journal of Nursing. When I was a certified orthopedic nurse, I was part of the National Association of Orthopedic Nurses; when I was a school nurse, I was part of the National Association of School Nurses. I believe in being part of national associations in order to be a group to advocate for whatever issues need to be changed.”
Q: Can you talk to me about your experience as a school nurse?
“As a school nurse, I kinda feel like these children are society’s children. They all need our attention. My school had 650 students, and an average of 40 students would come through the door each day. School nurses are there as health advocates for students and for families. They are helping and educating the teachers to understand what to watch for, keeping emergency plans in place, keeping care plans, and preventing children from crisis. Beyond first aid, we cared for students with diabetes, allergies, asthma, and so many other ailments.
Allergies have become much more prevalent. When I started in 2005, I had 3 epi-pens. By the time I retired, I had 38 of them. Same thing with asthma: I started with 6 or 7 inhalers and ended with 25.
I spent hours and hours of my own, unpaid time trying to do my best to help these children. Another nurse and I would sit in our offices after school compiling paper, sending out notices to parents, calling parents, this and that. I remember the other nurse’s husband said, “Well, now you’re making, like, 4 dollars an hour.” We would remain at the school and not be paid because our number one priority was for our students to be healthy.
One of the major things I wanted to share with you was (and this was evident to me when I went to my gastroenterologist for a routine appointment) that when I told my gastroenterologist that I was a school nurse. He said, “I am so grateful to my school nurse because she discovered there was something wrong with my vision in 4th grade.” This is so important: in society, there are probably so many people who probably don’t have great vision and don’t know it. You can’t learn or read if you can’t see. Vision is so important. When I was a school nurse, unbelievably, 1 in 7 children had some sort of vision deficiency. But, if children have never experienced good vision, they don’t know that their vision is bad because it’s all relative. Vision is so important because it allows you to comprehend the world to your fullest potential.”