During the seven years since Tina’s crisis, we have had an additional few hospitalizations, generally for a week each, and generally associated with an infection of some kind. Respiratory infections are the most dangerous, but urinary tract infections can also become systemic and life-threatening.
If the infective agent is a virus, not much can be done to fight it except to support the patient as her immune system battles to save her life. Combating secondary bacterial infection is often required, too. A bacterial pathogen is likely to be susceptible to antibiotic treatment. A mild broad-spectrum antibiotic might suffice, though often one needs a stronger drug tailored to the specific type of organism, Gram-negative or Gram-positive, staphylococcus or pseudomonas, etc. Medicine that can be given orally (by gastric tube, in Tina’s case) is more easily administered than medicine that needs to be given intravenously. In Tina’s case, several such IV treatments have left her arm and foot veins too fragile. That’s why a chest-level port will be needed.
When she is hospitalized, we have our own nurses accompany her, doing as little or as much as the hospital staff is comfortable with. This is expensive, as our insurance does not cover this second layer of nurses; but it assures that her special needs are understood and receive attention. It provides continuity of care for her and continuity of employment for the nurses.
FIGHTING FOR YOUR PATIENT
You will want to get as familiar with your patient’s diagnosis, treatment, and prognosis as you can. While the patient is in the hospital or at home, you will need to keep alert and to ask questions. During the 100 days my [DWC’s] wife was in the Critical Care Unit of our Orange County [NY] Regional Medical Center, I did just this, as described in our book, Ting and I, in the Foreword written by our principal doctor on the case, Richard F. Walker, MD:
Intensive care specialists learn to cope with the possibility of bad outcomes, in part, by de-personalizing the patient into a series of physiologic challenges, much as the combat soldier might resist making very close friends when the chance of death is ever-present. The battle for life, then, consists of attempts by the medical staff to raise blood oxygen, combat infection, preserve nutrition and urinary output and avoid hospital-acquired infection.
The physician thus runs the risk of partially replacing the patient as the object of care by worrying about the frequency of reportable iatrogenic complications, medico-legal risks and reimbursement considerations.
Dr. Jerome Groopman in his excellent book How Doctors Think describes the biases and decision-making consequences of such distractions, as well as the dangers of projecting one’s own concept of meaningful existence onto others. He specifically singles out the important role of the patient or patient-advocate in refocusing the physician on what is objectively possible and beneficial.
Such a bias crept into my own thinking as my mounting feelings of hopelessness at returning Tina to a level of function worthy of the effort were rejected by Doug. His exhortations for better care were often viewed by me as selfishly motivated and without sufficient regard for the burden and suffering the illness was creating for Tina. My attempts to gauge her feelings during Doug’s infrequent absences from her bedside revealed that her goals mirrored his. I attributed her attitude to a desire not to hurt or disappoint him, or to stereotypical Asian stoicism.
Doug tirelessly directed the attention of the health care team to seemingly trivial aspects of her care, asking detailed questions and demanding satisfactory answers, even occasionally suggesting changes in her care plan. My periodic annoyance, hopefully not always apparent, served to refocus my attention away from the pathophysiology and back to Tina. What I did not initially realize was that Doug’s persistence was improving his wife’s care.
Being human, doctors and nurses respond to encouragement and criticism, and your attitude will affect theirs. Up to a point, the more interest you show, the more involved they will be. Any virtue can be overdone, however, and one must gauge whether you are risking raising hostility rather than improving care.
YOUR NURSES, YOUR DOCTOR, THEIR HOSPITAL
Recently (February 2016), our 71-year-old quadriplegic patient became ill, running a fever (rectal, body core temperature of 104°F), and she was taken by ambulance to the Emergency Room of the regional medical center, a new facility built a few years ago, located some 20 miles from our home.
Much had changed since she was at the same hospital three years ago: there are no longer restrictions on visiting hours. Patients and their visitors are allowed to use cell phones now. In general, an effort was made to make it convenient for patients and their families.
As is our practice, we had our nurses accompany her while going to and from and while staying at the hospital, even though our insurance does not cover doing that.
Having our own nurses there has the advantage that errors made by the hospital staff are likely to be picked up and corrected. In one case, a hospital nurse inadvertently and unobtrusively left a tourniquet on our patient’s foot after drawing a blood sample. A while afterward, our own nurse noticed that one foot was different in color from the other, and when our nurse investigated further, she found that indeed the tourniquet had been left on. She removed it. The first two nights, our patient did not sleep well. On the third day, our nurse noted that the hospital staff had not given our patient her nighttime Ativan anti-anxiety medication. When this was done on the third night, after the omission was brought to the attention of the hospital staff, our patient slept much better.
In some instances, our nurses were able to accelerate some aspects of the care, either by helping or by calling her needs to the attention of the hospital staff.
Generally, it seems likely that having one’s own nurses to help and observe improves the care the patient receives, especially where the patient has problems communicating or understanding, as was true here.
We tell our nurses to do as much or as little as the hospital is comfortable having them do. We found that the hospital staff was very cooperative with our nurses, something we greatly appreciated.
It can be a bit boring for our nurses to have less to do while on hospital duty with our patient, but perhaps the change of scene and the fact that they’re getting paid without having direct responsibility offsets the disadvantage of possible boredom.
Communicating to our staff the whereabouts of the patient in this situation is a little complicated, but cell phone calls and texting allowed us to coordinate the nurses’ attendance, first at the hospital and then back home right after our patient returned.
In talking with the doctors to try to get an unambiguous diagnosis, I found there was a lot of ambiguity. The chest x-rays which could indicate whether or not there was pneumonia were complicated by the presence of a bit of post-mastectomy prosthesis material placed two decades earlier in the area in front of the lower right lobe of the lung, and initially a haziness seen there was interpreted as pneumonia, but later this region was ignored after the issue of a prosthesis was raised. Of course, ignoring that region would miss signs of pneumonia that happened to be there.
Using two antibiotics intravenously, the hospital rapidly returned our patient’s vital signs to her normal levels, essentially overnight. The next few days, these vital signs remained relatively normal, and we waited for results from the analyses of urine and blood samples taken the first day.
Our patient entered the hospital Sunday evening, and she was cleared by the infectious disease specialist MD to leave the hospital Wednesday evening, which we did. It never became clear what the cause of her fever was, but the infectious disease specialist indicated it was probably pneumonia, which, if viral, was cured by the patient’s immune system, and if bacterial, was eradicated by vancomycin and Zosyn antibiotics. Interestingly, hospital personnel advised us to get our patient discharged as soon as it was safe to do so, as hospital-acquired (nosocomial) infections were common.
Our patient came home with a revised list of prescriptions, including prescriptions for yet a third and fourth antibiotic, Levaquin and Macrodantin. Two days later, we reviewed the revised prescriptions with our own family doctor, who concurred in the antibiotic additions, but who mostly decided to retain the doses and timing that we originally had for her other medications, rather than adopt the somewhat different recommendations of the hospitalist.
Hospitals prefer to use their doctors rather than yours. When our patient was admitted to the hospital, we requested that her pulmonologist be involved in consulting about her care. Although it was decided that she would be admitted to the hospital by the authority of the hospitalist, we were given to understand that her pulmonologist would be consulted.
He did not come the following day, Monday, so on Tuesday morning, I [DWC] drove to his office a mile or so away from the hospital, and I talked with his secretary, as he was out of town. She indicated that he was aware that we wanted him involved, but the hospital had raised a bureaucratic objection to this. I immediately returned to the hospital, talked with the patients’ advocate department, who were very accommodating, and it was quickly arranged that our pulmonologist be invited to consult, which he did that evening and the next day. So, while the hospital initially made it difficult for our private doctor to be involved, their appeal process worked quite well.
By the time our pulmonologist arrived, the patient’s vital signs were nearly normal, as were her lung sounds, and there had been no clear indication of pneumonia on the chest x-rays, so he hypothesized other causes, none of which explained the 104-degree rectal thermometer reading Sunday night, nor its rapid reduction after the administration of IV antibiotics.
While at the hospital, we met the pulmonologist who had been involved with our patient’s care 12 years previously, and she seemed to be readily available there, so the next time we may use her rather that our private pulmonologist. That plan suggests that we establish a continuing relationship with the hospital’s MD, having our patient see her perhaps twice a year, as we were doing with the other pulmonologist who had difficulty getting to the hospital when we needed him.
In general, we were quite satisfied with the care provided by the hospital, and their cooperativeness and their willingness to have our patient leave after a short stay, to help reduce the risk of her picking up germs from other patients.
Another plus for the hospital’s practices is that they made the results of all the tests done available, at a website that we could access once we set up a user identification name and a password. We were able to print out the results and bring a subset of these to our family doctor two days later when we wanted to discuss the wisdom of changing the prescriptions.
Diane R. Beggin, RN
40 Sycamore Drive
Montgomery, NY 12549
Our book is available from amazon.com, bn.com, and OutskirtsPress.com: How to Manage Nursing Care at Home
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