When people in different parts of the country relate personal experiences to me, and a common theme emerges, my brain kicks into motion. Perhaps I’m on to something here. I try to identify the various threads in the common theme, wondering if there is a relationship between them. With so many people experiencing X and Y, what’s causing this to happen? And I ask myself, if, in all these varied episodes, the issues that leap out at me are actually about the same thing, are they rooted in the same cause, or similar causes? If I answer my own questions with an affirmative, my brain shifts into overdrive, creating different scenarios that could potentially explain these occurrences. I pull my explanations and scenarios from all sorts of referential material in my brain’s personal repository. And on a number of occasions, I’ve been happy with my explanations, only to read them in print in some point in the future, or hear others more “expert” relay them as truth. Of course for me, it’s anecdotal and non-scientific research, but patterns are significant and worthy of exploration. It’s my way of striving to understand a piece of what is going on around me.
Or perhaps I’m not on to anything at all. Perhaps my brain needs to focus on a new predicament because this one is merely a series of coincidences. That remains to be seen. Suffice it to say, I have been in brain-whirling mode recently.
My questioning pertains to hospitalizations, or procedures performed in hospitals. I’ve chosen a few episodes and I am confident they are accurately represented. These illustrate a common theme with various threads. Please note I am not going to talk about bad medicine, incompetent doctors, or medical malpractice. In fact, a common thread in each of these non-fictional scenarios is the consistency of sound medical practice. I will offer a story and identify the thread, because I think I am on to something here. At the very least, we can appreciate the complexities of patient care, and ask ourselves a final question: How can the underlying situation be changed to make it better? Please let me know what you think; I welcome your comments and ideas.
I once visited a pediatric patient in the hospital. I sat in the large waiting area while a doctor was with the patient. I was thumbing through a nature magazine when a young mom came into the large room, pulling her little toddler-aged girl in a red wagon. The kids preferred the wagons over wheelchairs I was told; they can cuddle up in nice blanket and have room for their favorite stuffed animals. The little girl’s IV pole was attached to the wagon. This wagon looked like a clever way to offer a diversion to a sick kid.
This little girl was out of sorts, though. She was whining and crying and hanging onto her mother. The young mother looked exhausted, and patiently, she tried everything she could think of to help settle her young one down. I struck up a conversation with the mom; the three of us were the only ones in the room. I started turning the pages of the magazine and showing the toddler pictures, and made up a few little stories about some of the flowers in an ad. I used my calmest “Mom” voice. There was a picture of a waterfall, and so I told her about Yosemite National Park and the waterfalls there. After a minute or two, the little girl started to become less agitated. I offered her the magazine, which she took, and even smiled a bit. The mother looked at me and also smiled.
“Yesterday,” the mother told me, “my daughter was scheduled for heart surgery.” I invited her to sit down. She explained to me that the child had been born with a heart defect. So she and her daughter had traveled from out-of-state for this “last chance” operation. At home, cardiac specialists had performed other procedures on her daughter, and still the problem remained. According to the mother, this operation was the final thing that could be done to help. Without the operation, the child would die. The mother watched her child for a minute.
She continued on with the story. Early yesterday morning, the little girl was prepared for surgery. The morning appointment time came and went, and nobody from the operating room came to escort her daughter to surgery. Minutes passed. Then a half hour passed. Then an hour passed, and still no one came to accompany the girl. Hours passed and still there was no word from the surgical staff. The mother said she was frantic. She wondered if they had forgotten that her daughter was on the schedule. The unit nurses had no information. The floor nurse was finally able to speak to someone in the operating room. The mother was told that, after a final consultation with the pediatric cardiac team, it was determined that this surgery proved to be too risky, too dangerous, and it was not medically advisable to proceed. The surgical team then proceeded with the next patient on the list. But they never called to explain this to the mother.
The mother smiled as she watched her little girl making up stories about the pictures in the magazine. The child was in a better mood, relaxed. This was the way her daughter usually acted, she told me. The toddler was adorable, and wanted to move to the next window. They were both smiling now, and the mom pulled her in the wagon to their next stop to play.
The medicine was not the issue here. Teams of doctors at this university hospital did everything they could to help the child, including deciding not to operate. Communication was the issue. Was there no one on this team of medical specialists responsible for providing information to the family in a situation like this? In most hospitals, there is a system in place for providing information to families when the loved one is in surgery. This is true for patients already admitted to the hospital, and patients who arrive from home on the day of surgery. There are waiting rooms for family and friends. In some hospitals, information from the surgical team is called down to staff members in these waiting areas, and the staff updates status boards. The system is based on confidentiality; patients are represented by numbers. They can tell whether their family member is in surgery or post-operative care. Usually, there are phones in this room so surgeons or nurses can speak to family members before, during or after a procedure, if that is warranted. However, our young patient was never brought to surgery. The doctors moved on to the next patient. What happened?
Two summers ago I had surgery on my spine. “Serious” surgery, people called it. So afterwards, and for the next three days, I told my nurses that I was seeing double. I wasn’t seeing double every moment I lay on my hospital bed; the double vision was intermittent. It was a new experience for me, and sometimes the second version was a bit blurred around the edges, so I could tell which was the object and which was the facsimile. As a team of experts had just spent hours tugging at, operating on, checking and scanning my spinal column and surrounding area, and knowing that I had been given a fair amount of anesthesia, I figured this vision anomaly was significant. I mentioned it to the nurses when they came to check on me, or to give me my meds, or to answer my call button. And as no one seemed to pay much attention to it, I began to think that perhaps it wasn’t an unusual experience. One nurse did ask me a follow-up question about it after describing it again, after I don’t know how many times; she even seemed a bit surprised to hear it.
In mid-morning of day three, my surgeon purposefully strides into my room wearing scrubs, and holds up an index finger in front of my face. “How many fingers?” he asks. Not even a “Good Morning;” This was serious business. Finally! He performed an examination and ordered the appropriate tests. But why had it taken so long?
I don’t know if my double vision was documented before that particular nurse acknowledged my observation. If it had been charted earlier, then why hadn’t it been flagged? Perhaps I wasn’t heard each time I mentioned this occurrence; I was taking medications that could slur my speech. No one had asked me to repeat things, however, so I don’t believe this was the case. Or perhaps nurses didn’t consider it noteworthy, but I find that difficult to believe. It could be that one or more nurses had made a mental note to chart it, but had forgotten to do so. What I do know is that no person acknowledged my report of double vision until that one nurse offered a follow-up question. So communication is critical and again, there is a break-down in the response system, either for a lack of hearing/listening, charting, offering follow-up, or questioning.
During that same week-long hospital stay, there was one medication the doctor prescribed that I considered important, but not critical. It assisted with the healing, but it did not lessen pain or fight infection, for example. After a couple days of experiencing discomfort, the staff narrowed down the culprit to this small colorful pill; one of its side effects is itchiness. The doctor ordered a new medication that performed the same function, and I had no further problems. One afternoon when a nurse handed me that little paper cup of meds, I immediately recognized that bright pill. I told the nurse that this drug made me itchy and my prescription had changed. She insisted that this was my medicine. I explained again. She was certain. I could see that she wasn’t going to walk down the hallway and back to the desk to check the chart after I suggested she do so; she was 100% sure this was the correct med. I gave it some more thought. I knew this dosage wasn’t going to harm me, and in fact, would help me, despite an unpleasant side effect. After several give and takes, I took the darned pill and figured I would just get a little itchy and get on with it. I said to myself, Choose your battles! Had it been a critical med, I would have held my ground. Plus, I needed my other meds; my medicine for pain was rapidly wearing off and other prescriptions were also time critical. Days later, when recuperating at home, I carefully documented these things on the patient comment card, plus other experiences, including some very positive ones I had encountered. Weeks later I received a personal, non-form letter from the hospital thanking me for my comments and learned that the hospital addressed some of my issues, specifically delineating the changes they were enacting. I do not know if the double vision or this particular medication incidents were discussed, but I was satisfied that the hospital took my remarks seriously.
In the communication theme, listening, acknowledging, questioning, and double checking are the threads. Why had the nurse not re-checked my chart at my request? Was she so far behind in her work schedule that she couldn’t afford the time to walk down the long hall and possibly get way-laid into doing something else that would put her further behind schedule? Had it been her experience that patients generally get confused about their medications? Or perhaps she and another nurse had already double-checked the meds against my chart, and my chart now documented this bright pill as my medication again?
Recently, a friend working in concert with her medical team, elected to participate in a clinical trial to treat an invasive condition at a university teaching and research hospital. She considered the treatment that would be administered without placebo, and after agreeing that this was indeed the right course of action for her, received a detailed daily schedule for administration of the particular drugs in the trial. It was a complicated schedule, which included the dispensing of a combination of drugs on different days. My friend had lined-up family and friends to accompany her to these treatments.
Three days before beginning the trial, she received a phone call stating that there had been a change to the treatment schedule. The time for the follow-up appointment with her doctor had changed and she would start treatment the same day. When asked for an explanation, the scheduler did not have an answer. She told my friend that the trial coordinator or the doctor’s nurse would call within an hour to discuss the change. Five hours later, my friend received a call from the trial coordinator. She was told that a medication that she had previously taken for an unrelated issue disqualified her from participating in the study. She was now on a new daily schedule for a different course of treatment. When the patient requested the trial coordinator to contact the doctor to call her, the coordinator was hesitant to oblige. My friend insisted she speak to her doctor before agreeing to the new treatment. Finally, a satisfying call from the doctor came. The doctor explained why the changes were made and why she no longer qualified for the clinical trial. Apparently, a previous medication would have an adverse effect with the new trial drug. The doctor also offered a sincere apology. Together, patient and doctors discussed the new regimen and schedule, and the doctor answered questions thoughtfully and in great detail. Based on this information, the patient agreed to the plan.
Had the patient been notified by the trial coordinator of the changes prior to receiving a call from a scheduler, undue stress, fear, and disappointment could have been avoided. It was not the responsibility of the scheduler to offer an explanation for a change of treatment. Again, the line of communication was broken.
When a hospital representative contacts a patient, there are multiple facets to the telephone call besides the pertinent information being delivered. How a person communicates this information is significant. Through the inflexion of the voice, the phrasing of words and the tone, a listener can distinguish if the person placing the call is hurried, stressed and in a bad mood, or smiling and relaxed. All hospital employees, the medical professionals and technical assistants as well as office personnel and housekeeping staff must realize that they are representatives of an organization designed to help sick people. Patients dealing with complex medical issues and their loved ones are already stressed. It’s difficult enough when patients do not receive pertinent information in a timely fashion. Patients want to know that their health, their lives are respected and valued. When the hospital representative is distracted or hurried, patients feel increased stress; they need to know that the hospital has their best interests at heart. Patients need to know that they can trust the hospital to make the proper call with regard to their health. Communication is a matter of instilling confidence.
One hospital I know of has invested considerable resources to ensure that patients feel satisfied with their hospital experience. Research indicated that while patients highly approved of the health care delivered during their stay, they were less satisfied in other areas, notably, communications. As a result, the hospital embraced a series of changes for all departments. Survey results now indicate a significantly improved experience for patients. To illustrate, every director and person on this task force personally visits a patient each day and inquires how the patient is doing, asking if there is anything that can be done to make that patient’s hospital stay better. Then, they see to it that something is done to help the patient. This takes a chunk of time out of each participating individual’s day, to be sure. But the results are worth it. Can you imagine lying in your hospital bed and the CEO of the hospital walks in to say hello? Of course this team is listening! A second change that has produced huge results is that every single person is directed to smile when they answer the phone. Yes, Smile! It’s working.
In the final example, a friend had so much pain in her hip that she couldn’t sit all afternoon. Her condition worsened and by night she could not move. After hours in the emergency room, a hospital bed became vacant and she was admitted. Despite combined efforts of a qualified medical team, she could not move her leg and the pain was fierce. Doctors worked for days to help alleviate symptoms and get to the root of the problem. They took her history, performed exams, ordered tests, conducted scans, awaited results, administered drugs and consulted with each other and with the patient. They decided she was not a candidate for surgery.
Hospitalizations can be difficult. Hospitals are noisy, busy places and frequently, it’s hard to sleep. Nurses must attain patient information, or “vitals,” such as blood pressures and temperatures, many times a day, and frequently, in the middle of the night. Blood draws can occur at 4:00 in the morning. Your hospital roommate might have a bad night and require a team of people talking and working around the patient with just a curtain to shield the activity and sounds from you. The IV monitors chime or beep, what seems like, all the time. The patient is uncomfortable, or in pain, or nauseous, or delirious from meds, or all of it. The patient can be nervous or scared. Patients press their call buttons but nurses or aides may not be able to answer the call right away. The patient waits for the doctor, who can arrive at any time, even when the patient is barely awake, and the patient might not recall quickly the questions to ask, or may not remember the physician’s responses. And patients worry about getting sicker in the hospital. There is a lot of stress.
At this point my friend has been in the hospital for a week without being able to move her leg. The pain continues and there is no diagnosis yet. Physical therapists have attempted to work with the patient, but as she is unable to move her leg, they have stopped coming daily.
Enter the rules and regulations of the health insurance company. A hospital staff member tells my friend she must be discharged because the hospital has performed all necessary and prescribed tests, and cannot justify extending her stay to the insurance company. It’s the weekend and the insurance office is closed, so the staff person, a hospital liaison, cannot petition the company for an extension. The liaison told my friend that not only would she have to be discharged, but that if she opted to stay in the hospital, the patient would have to incur the costs personally.
Instead of concentrating on getting better, staying calm and resting, my friend is now spending considerable energy and time trying to find someone who would listen to her. How can she be discharged without any arrangement for home health care since she cannot manage on her own? She felt that nobody was listening. Finally, a physical therapist stopped by to see if the patient was somewhat more mobile, listened to the patient and intervened, successfully advocating on my friend’s behalf. Knowing that a specialist was expected to examine the patient the next day, and concerned the insurance company might not pay for any future time in the hospital, the therapist personally contacted the doctor and explained the predicament. The specialist physician consented to a rare Sunday evening consult. In a visit that lasted two hours, he took a full and detailed medical history, examined the patient, studied the test results and scans, and asked many questions. This doctor diagnosed the condition as one pertaining to his specialty. With a diagnosis, and a course of action charted, the hospital worked with the insurance company to extend the patient’s stay.
One would think that with a firm diagnosis and treatment schedule in hand, the patient could begin to relax. After two more days in the hospital that included new tests, medicines delivered intravenously, and physical therapy, the patient was told she would be released to a skilled nursing facility. While she could not drive and return to work, she could at least move her hip, sit, and was starting to use a walker. There was progress. My friend was asked to choose a rehab facility that afternoon. It had to have a good physical therapy department staffed seven days a week, and be covered by insurance. The hospital liaison merely handed the patient a list of facilities and refused to assist my friend in finding an appropriate and available placement. For a hospital patient who must take many medications, and who has not slept well in over a week, this was a daunting task. She was supposed to negotiate Web sites, make inquiries, engage in detailed conversations and make an informed decision. My friend said that once again, she talked to people in the hospital, but no one was listening.
After several fruitless conversations, my friend insisted that she speak with the liaison’s manager. A more experienced liaison then visited with my friend, and at this meeting, the staff member apologized. She said that the other liaison had less experience, and while sometimes it is enough to offer basic assistance, such as in the way of a list of names of rehab facilities, it is not always the best way to help a patient. Many patients do not always have a network to help them negotiate these difficult decisions. This liaison helped my friend by finding a vacancy in a rehab hospital that offered physical therapy and was covered by insurance.
I did a little research. According to statistics reported on March 27, 2012 during a PBS NEWSHOUR broadcast,* more than 50 percent of adults in the United States are single. Compare that to 1950, when 22 percent of American adults were single. As of 2012, 31 million people, or about one out of every seven, live alone, making up 28 percent of all households in the United States. In the 1950 statistics, four million adults lived alone which accounted for 9 percent of all households in this country. Clearly, our health care system must be able to accommodate all people in a rapidly changing demographic.
Communication and listening issues prevail. Also, acknowledgement remains an issue. Self-advocating patients are frustrated that their requests are not noted, and that their destiny hinges on somebody working without the proper tools and skills, and without their best interests in mind. Nurses and doctors understand the emotional and human aspects of health; getting sick is scary. Your whole life is turned upside down. Sometimes, you can’t do the most basic things, like sit or stand or walk. Your independence is gone. Moving may be difficult, but one thing that remains is the ability to reason and plan for your own wellness. But even that can be compromised due to the nature of the condition; medications or exhaustion, for example, can cause the most active people to tire quickly. So hospital representatives need to understand that patients may have very little control over their lives at that moment, and the one thing the representatives can provide is a sense of calm and order. Their work, their acknowledgement and follow-through shows patients there is a rational and proven process in place to help patients attain the very best information and treatments possible. Hospital representatives should see themselves as having all the tools necessary for all patients. It’s an art. These representatives can skillfully select and provide patients with the information, policies and schedules necessary. They can make requests on behalf of and advocate for the patient and, in doing so, gain the patient’s confidence and respect. I am guessing that studies have determined that patients in a positive frame of mind heal more quickly than stressed patients. I don’t know this for a fact, and perhaps I can blog about that sometime. I do know that it’s hard to concentrate on getting well when you are in the bed, feeling sick, unable to move, and wondering why nobody is listening to what you have to say.
Listening and communication skills are paramount in any organization, and especially in medicine. Considering that people are sick, or experiencing unknown symptoms, it can be difficult enough just to stay calm. Yet in all instances, and in many more that I have been told, the patients have to work hard to be heard, and have to determine if the battle is worth it. Can it be that there have been so many staff cuts, so many reductions in force, that there are not enough people left working in the hospitals to handle all that must be done?
Also, medicine is now a collaborative process; hospitals participate in team care. In fact, in one local pediatric hospital which includes a hospital school, the head of the school accompanies doctors and health specialists on rounds, addressing each individual patient’s education issues with families. The school specialist understands which medications affect memory, for example, and can explain to parents how certain lessons may have to be re-visited at some point in the future. With so many facets of patient care considered, however, do medical professionals become so expert in their areas of specialty, that working beyond their specific area is not considered because another specialist is there to cover that part of the patient’s care?
This is not to speculate that people don’t care. On the contrary, most people care a great deal. But there are so many specific items that must be completed, that must be documented for each aspect of a patient’s health care program, and I wonder if there is enough time to address everything. Health care practitioners must document so much in accordance with hospital and federal, state and local regulations that it seems that they have to be able to continually choose which pieces of information to report. And do they report items that are not in their specialty?
Team health care is a very positive thing. Think of the extensive training, research, experience and talent a group of dedicated medical specialists offer patients. However, when something doesn’t fit in the usual pattern or structure protocol, who intervenes? Who remembers to call the parent of a child to tell her the surgery will not be performed? It seems to me there is a way to offer the best information to all patients and loved ones, even if the procedure is atypical.
Without proper training and expertise, hospital staff may not know that they can do more than their training provides. More importantly, young and inexperienced representatives may not know that their inability to handle a situation well causes great stress for the patient. Supervisors are busy, too, but surely someone can provide additional information. Or maybe not. Is the system so strained because of regulations and loss of staff that questions are not welcomed? Asking too many questions may be seen as a hindrance. They take a great deal of time to answer, and so while one person is receiving information, something else is left unfinished. Is it the patient’s responsibility, and is it in the best interests of that patient to have to ask, again and again for results? I don’t think so.
So I have answered Yes to my original questions; there is a common thread to these scenarios. It is communication, and listening crops up the most, as patients experience a mounting frustration because their health care representatives do not listen. Patients want hospital employees to help them, not hold them back as they jockey for the best care possible.
Now, what can be done about it?
*Author and sociologist Eric Klinenberg stated: … At the same time, especially as our society ages and the boomer generation begins to age alone, we will find that our housing is not quite up to the challenge of giving people what they want, which is a place of their own, if they can’t have the right partner, but also connection to other people and to all kinds of care and support. We have a long ways to go there.
PBS NEWSHOUR, March 27, 2012 – Conversation with Ray Suarez and Eric Klinenberg, a sociologist at New York University and author of Going Solo: The Extraordinary Rise and Surprising Appeal of Going Alone. Please see: http://www.pbs.org/newshour/bb/social_issues/jan-june12/goingsolo_03-27.html