HOSPITALIZATIONS
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.
Contact information:
###
Contact information:
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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