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Patients and Patience

Yesterday I spent my only day off from work to accompany my girlfriend at the hospital, not because she’s on duty but due to the fact that her father is still currently confined at the Intensive Care Unit. She greets me with a smile and once we were permitted to do so, we came in to see how he was doing.

There was still a multitude of wires and IV tubes attached to him, monitoring his vital signs, providing nourishment, cleaning up the toxins. I told the resident on duty that day, I may be a doctor by profession but at that point in time, I was a just a another anxious visitor who wanted to know how the patient was doing, just like everybody else. The same goes for my girlfriend, her role for the past few weeks was not of a doctor on duty, but that of a daughter to her father. Even without saying, I know it is a trying time for their family right now. And contrary to what some people might think, just because a family member is a doctor, doesn’t mean he has all the answers. To paraphrase, we’re also human.

And as this story is still unfolding, kindly allow me to share an article I read about the matter, originally published in the New England Journal of Medicine by Dr. Louise Aronson.

patient asking doctor

“Good” Patients and “Difficult” Patients — Rethinking Our Definitions

Four weeks after his quadruple bypass and valve repair, 3 weeks after the bladder infection, pharyngeal trauma, heart failure, nightly agitated confusion, and pacemaker and feeding-tube insertions, and 2 weeks after his return home, I was helping my 75-year-old father off the toilet when his blood pressure dropped out from under him. As did his legs.

I held him up. I shouted for my mother. As any doctor would, I kept a hand on my father’s pulse, which was regular: no pauses, no accelerations or decelerations.

My mother was 71 years old and, fortunately, quite fit. She had been making dinner and said she dropped the salad bowl when I yelled for her. She took the stairs two at time. Something about my tone, she said.

Together, we lowered my father to the bathroom floor. I told her to keep him talking and to call me if he stopped, and then I dialed 911.

In the emergency department, after some fluids, my father felt better. My mother held his hand. We compared this new hospital with the last one where we’d spent so many weeks but which had been diverting ambulances elsewhere that evening. The doctor came in and reported no ECG changes and no significant laboratory abnormalities, except that the INR was above the target range. The doctor guessed the trouble was a bit of dehydration. He would watch for a while, just to be safe.

My mother waited with my father. The rest of us filed in and out, not wanting to crowd the tiny room. Then my father’s blood pressure dropped again. I told the nurse and stayed out of the way. She silenced the alarm, upped the fluids, and rechecked the blood pressure. It was better. But less than half an hour later, we listened as the machine scanned for a reading, dropping from triple to double digits before it found its mark. The numbers flashed, but the silenced alarm remained quiet. I pressed the call button, and when the nurse arrived I asked her to call for the doctor. When no one came, I went to the nursing station and made my case to the assembled doctors and nurses. They were polite, but their unspoken message was that they were working hard, my father wasn’t their only patient, and they had appropriately prioritized their tasks. I wondered how many times I had made similar assumptions and offered similar assurances to patients or families.

After weeks of illness and caregiving, it can be a relief to be a daughter and leave the doctoring to others. But I had been holding a thought just beyond consciousness, and not just because I hoped to remain in my assigned role as patient’s offspring. At least as important, I didn’t want to be the sort of family member that medical teams complain about. Now that I’d apparently taken on that persona, there was no longer any point in suppressing the thought. Although the differential diagnosis for hypotension is long, my father’s heart was working well, I had adhered to the carefully calculated regimen that we’d received for his tube feeds and free water intake, and he did not have new medications or signs of infection. Those facts and his overly thin blood put internal bleeding like a neon sign at the top of the differential.

I rested my hand on my father’s arm to get his attention and said, “Dad, how much would you mind if I did a rectal?”

We doctors do many things that are otherwise unacceptable. We are trained not only in how to do such things but in how to do them almost without noticing, almost without caring, at least in the ways we might care in different circumstances or settings. A rectal exam on one’s father, of course, is exactly the same as other rectal exams — and also completely different. Luckily for me, my father was a doctor too.

When I asked my crazy question, he smiled.

“Kid,” he replied, “do what you have to do.”

I found gloves and lube. I had him roll onto his side. And afterward, I took my bloody gloved finger out into the hallway to prove my point.

I realize that walking to the nurses’ station holding aloft one’s bloody, gloved hand is not an optimal tactic from a professionalism standpoint — but it worked. A nurse followed me back into my father’s room, saw my panicked mother holding a bedpan overflowing with blood and clots, and called for help. Within seconds, the room filled, and minutes later, when the ICU team showed up, I stood back, a daughter again.

In retrospect, what is most interesting is how much more comfortable I felt performing an intimate procedure on my father than demanding the attention of the professionals assigned to care for him. Abiding by the unspoken rules of medical etiquette, I had quieted my internal alarms for more than 2 hours. Instead, I had considered how doctors and nurses feel about and treat so-called pushy or “difficult” families, and as a result, I had prioritized wanting us to be seen as a “good patient” and “good family” over being a good doctor-daughter.

Although many physicians would have made different choices than I did, the impetus for my decisions lay in a trait of our medical culture. When we call patients and families “good,” or at least spare them the “difficult” label, we are noting and rewarding acquiescence. Too often, this “good” means you agree with me and you don’t bother me and you let me be in charge of what happens and when. Such a definition runs counter to what we know about truly good care as a collaborative process. From the history that so often generates the diagnosis to the treatment that is the basis of care or cure, active participation of patients and families is essential to optimal outcomes.

There will always be patients and families who are considered high maintenance, challenging, or both by health care providers. Among them are a few with evident mental illness, but most are simply trying their best to understand and manage their own or their loved ones’ illness. That we sometimes feel besieged or irritated by these advocates speaks to opportunities for improvement in both medical culture and the health care system. Culturally, we could benefit from a lens shift toward seeing more-vocal patients and families as actively engaged in their health care, presenting new, potentially important information, and expressing unmet care needs. At the systems level, we need to both count (using specially designated sections of the medical record) and reward (through diagnostic and billing codes) the time that providers spend talking to patients and families.

I’ll never know whether such changes would have altered my behavior or that of the medical staff on the night of my father’s massive intestinal bleed, and fortunately we all acted in time. I do know that 8 years later, the most vivid image I have of that night is not my father wobbling in the bathroom surrounded by cold, hard tile and angular metal structures, or a mustard yellow bedpan filling with bright red blood. The image is this, a worst-case might-have-been scenario had I not been there, had I not had medical training, had I not spoken up: my parents, sleepy because it was by then late at night, snuggled up together at the top of the gurney, my mother resting her head against my father’s chest, their eyes closed, their faces relaxed. His systolic blood pressure, usually 130, dropping to 80 and then 70. The monitors turned off or ignored. The lights dim. A short nap and they’d feel better. A little rest and maybe it would be time to go home.


kamote

life lessons 101 in progress

life lessons 101 in progress

I’ve always wanted to become a doctor. My formative years were greatly influenced by stories of the men in white and episodes of E.R. I was eager to experience my very own episodes of Grey’s Anatomy, complete with all the interesting cases, hospital drama, and emotional soundtrack playing in my head.

But that was then. Fast-forward to today, where I find myself working in a tertiary government hospital where, everyday, we are greeted with suboptimal working conditions and huge patient loads. Kayod kalabaw.

I must admit I have turned into a grouchy person who easily snaps and bears his fangs at the slightest provocation. You know. It’s hard to put on a smile at 3am when you have been awake for more than 24 hours, you’re so exhausted because you’ve been running around like a headless chicken, you haven’t studied for an exam that same morning, and you have an unfinished report due that very day. All you want is to be left alone with the work you have to do. Like in my chosen field where, most of the time, the longest meaningful relationship I’d want to have with a patient is just as long as the time it takes to complete his or her abdominal ultrasound exam.

But every now and then, we’d get reminders of exactly why we do the things we do.

His name is Darren, an eight-year old kid from Bicol. His friends and family fondly call him Kamote, a term or endearment lovingly given by his grandfather. A cute little name for a cute little man. It’s barely been a month since I began my rotation in Radiation Oncology, a section in our department that deals with cancer patients.

“Ilan taon ka na?” I asked.

“Eight po,” he answered back, trying to hold up his right arm and feebly attempting to extend eight tiny little fingers. He had difficulty extending his right elbow, likely one of the effects of surgery to his brain. He had been diagnosed with craniopharyngioma, a benign tumor that has a malignant behavior.

He talked about his home and current living conditions, parts of the medical ordeal he went through, and his love for TinTin, his childhood playmate. He thanked us for being mabait, with the utmost sincerity only a child can show – a gesture which struck me because he barely knew us. We had only met a few minutes ago.

“Anong naramdaman or inisip mo nung sinabi nila na ooperahan ka?” I asked.

“Natakot po,” Kamote replied. “Pero tinalo ko ang takot ko para sa mga magulang ko.” My heart started to break. He said that with a smile, his face glowing as if nothing happened. Only the surgical scar by the hairline at the left side of his forehead gave clue to what this kid went through. His spirit was inspiring and his inner strength, palpable.

And just like that, my weariness went away. That heavy felling you get on your shoulders and the dull pain you feel in your legs and feet at the end of a tiring workday just disappeared. In the face of sleepless nights, of inhuman physical and emotional demands, and of incommensurate payoffs, this is why we do it. Why Surgery residents go on duties 3 or 4 days straight, giving beyond what’s expected of them. Why Obstetricians dedicate their lives in bringing new life into this world. Why Pediatric residents lose sleep, pumping Ambu bags which help their patients breathe. Why oncology specialists strive to make the lives of their patients better. And why most doctors miss out on family occasions, rushing back to the hospital to attend to their patients in need. Ordinary people doing amazing things. Darren is an example of the little things that make it all worth it.

“Bakit po kayo nalulungkot?” he surprisingly asked.

“Huh?” I quipped.

“Eh kasi po, bakit po namumula ang mata niyo?”

“Ah wala, yung hangin lang yun. Yung electric fan kasi nakatapat sa mukha ko.” I answered. Kamote smiled.

To all my brothers and sisters who have answered the same calling, here’s to more kamote moments.

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About the author:

Toto Carandang, M.D. is a graduate of UERMMMC Medicine Class of 2003 and is currently pursuing post graduate training at UP PGH. Words and images are all Dr. Carandang’s.


Doctor as Patient

[NB: The following is the editorial reproduced in full from the Philippine Journal of Internal Medicine Vol. 50 No. 1 January – March 2012 issue, it was written byDr. Margarita Cayco. All copyrights remain with their respective authors and the Philippine College of Physicians]

I am the primary example of a doctor cast in the role of a patient.

This editorial is not a scientific or theoretical one but is my way of educating internists on another facet of medical care. To my medical students, may this article highlight to them that knowledge of the principles of medicine is not enough to practice medicine. It is also important to practice medicine in a humane way.

This article is the first time that I have put down in words my experience and my feelings about what happened to me. I hope the readers of this journal will allow me leeway in my choice of topic for this editorial.

I was hospitalized in late 2007 because of encephalitis, etiology unknown. I do not recall my symptoms prior to my admission. I was told I was highly febrile and complained of urinary retention. I ended up on a
mechanical ventilator because I was in a coma for several weeks and eventually got a tracheostomy, percutaneous endoscopic gastrostomy, a urinary cystostomy and had the requisite central lines. I had to undergo multiple lumbar punctures, phlebotomies and even blood transfusions. My case was a real meeting of minds which knew no boundaries or rivalries among graduates of different Filipino medical schools, just like my marriage to a UERM graduate (my being a graduate of UST medicine). My doctors were from UP-PGH, UST and UERM.

I was comatose for at least two months and thankfully I dot not remember anything that occurred in the intensive care unit. When I woke up I had to undergo rehabilitation (physical therapy and visual rehabilitation) for several months.

I owe my life to all my doctors, the residents, nurses and therapists and of course to my family, classmates, colleagues, friends and medical societies.

Being a patient made me realize what my own patients go through and gave me a firsthand glimpse into their sufferings. It made me sympathize and empathize more with them and made me more patient and understanding in my dealings with them. It makes it easier for me to discuss with them whenever the need for a procedure arises, especially a tracheostomy. I just show them my scars and almost always they agree to have the procedure done. I actually have not had a patient refuse a procedure after I talk to them. I tell
them that if I did not have those procedures done I would not be talking and walking now.

My experience as a patient was a humbling experience and hopefully made me a better doctor and teacher.


On God, Doctors and Nurses

I’d like to think that we work better together

I was still a resident in training when this particular incident happened while doing our morning rounds: one of the patient’s relatives approached us and asked what time a certain surgeon will do his rounds, politely we informed him that we are not surgery residents and maybe he should ask the assistance of the ward nurses. So in a not so subtle voice he proceeded to ask within hear shot of everyone around, “Who is the nurse in charge? Yung alalay niya? ” to quote him verbatim. Loosely translated, he was looking for the “aide”, absurd at it may be, as nurses are professional as well. Anyway, his reason for wanting to see the surgeon was that he wanted to talk to him before seeing the patient and telling her about the biopsy results. According to the relative, since he’s “just” a doctor (“doctor lang siya”), he wouldn’t understand the patient’s needs and emotional state and just give the medical mumbo jumbo of the disease and would nary a care about how the patient feels. I’ve heard enough. I went to proceed with the morning rounds thinking, is this just an outlier or do all other patient relatives feel the same way? I rather hope not, but if that is the way that they do see doctors in general, then that means as a doctor myself, this should be a wake-up call. As all the medical science I have learned in residency training will have boiled down to nothing if I forget the basic tenet of why we are here in the first place: to treat the patient and not the disease, if not cure him of his illness in the very least alleviate him of his sufferings.

The other issue here that I would like to raise is how the relative have belittled our colleagues in the medical profession, namely the nurses. Here we clearly see that the relative downgraded the nursing profession to co-equals in treating the patient to simple being a doctor’s assistant. The world is far from perfect, but it would be so much more a better place if we could set aside our own prejudice and stereotypes of what people are and what they are capable of doing. Nurses are our allies in making sure that our patients get better, and most of the time they do most of the work even if they are understaffed, underpaid and worse, unappreciated. Just to repeat the point, nurses are not our aides, they are our partners in healthcare. And for some us lofty doctors, this story should serve us well to be reminded that our profession is that of humble service. In good days, when we have accolades and praises when we do our job right, should just be viewed as a reward for a job well done. Same way as when we did all we could but things didn’t turn out for the better. We may strive to be, but we are not God to begin with, only his instruments in doing his will. Take it in stride, tomorrow is another day.


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