While I have lots of unpleasant memories of my training, I don’t have a lot of regrets. There is one case, though, that I cannot forget: I went along with care that I believed to be unethical. I can rationalize it by taking into account that I was the most junior member of the team, with no authority to countermand the patient’s primary doctor or anyone else. I can rationalize it by acknowledging that even today, decades later, I don’t have any better idea of how I should have handled it. Nevertheless, I can’t help thinking I will always regret my participation.
I was on the medical service at the time and was taking call on a Saturday. I was paged to the Emergency Room to bring up a new patient. Mr. Rivera (not his real name) was a 38 year old Hispanic man who had come to the ER for a simple sore throat, and gotten a devastating diagnosis.
Mr. Rivera had had lymphoma when he was 18 and had been treated aggressively with chemotherapy. He was a success story; the chemotherapy had put him into remission and he had lived the intervening years free of any health problems. That’s why he was not particularly worried about his sore throat. He thought it might be due to strep.
The sore throat was caused by strep, but during the evaluation, a routine blood count was dramatically abnormal. Mr. Rivera had a very aggressive form of leukemia, a known long term side effect of his lymphoma therapy. Given the nature of his leukemia, the chances of remission, let alone a cure, were very remote.
Mr. Rivera had always known that leukemia was a potential side effect of his successful treatment. He also understood that it was an extremely serious disease. That’s why, in our very first meeting, Mr. Rivera wanted to discuss his prognosis and insisted on making clear his wishes about treatment and death.
Mr. Rivera had lived through multiple rounds of aggressive chemotherapy to treat his lymphoma. He dreaded more chemotherapy, but if there was a reasonable chance that he would go into remission, he was willing to undergo more chemotherapy. However, if, as he suspected, the prognosis was grim, he would refuse chemotherapy so he could return to the Caribbean island where he had been born, and, as he put it, “die on the beach with his family around him.”
I was not encouraging in the least about his prognosis, but I would not make a definitive statement because, as an intern, I was not allowed to interfere with the primary physician’s relationship with the patient. All information about treatment recommendations and prognosis was to be left to the primary physician. In this case, since the patient had had no contact with any oncologist in the previous 15 years, he was assigned an oncologist from our staff.
I was relieved that I was under no obligation to give the patient the grim news. It was early in my career, and I had no experience telling a patient that he was probably going to die. In my naivete, I assumed that the oncologist would tell the patient the truth, and that the patient would soon be heading to the Caribbean to live out his remaining days with his family.
I had not reckoned on the fact that oncologists can often be very unrealistic. Some oncologists believe very strongly that even the most remote chance of a remission should be pursued aggressively. That generally dovetails nicely with the fact that most patients are desperate to live and are willing to undertake any treatment, not matter how painful or difficult.
Mr. Rivera had already made it clear, though, that he was not desperate to pursue any chance. He understood what it meant to have a potentially fatal illness; it had happened to him before. He understood was aggressive treatment meant; he had already experienced it once before. He was adamant that this time he was not willing to grasp at a tiny chance or remission and probably die in the hospital due to the effects of the cancer and the chemotherapy. If the chance of remission was very small, he wanted to go home and die with his family.
Visiting Mr. Rivera the next day I intended to discuss his plan to forgo chemotherapy and return home. I was completely unprepared to learn that his oncologist had told him that he had an excellent chance to be treated successfully and that it would be a mistake to refuse treatment. As Mr. Rivera recounted this information, he watched my face carefully to see my reaction. He was clearly suspicious of the information he received from the oncologist.
I knew what was coming next and I dreaded it. Mr. Rivera asked if I agreed with the oncologist. Remaining carefully impassive, I told Mr. Rivera that I didn’t know nearly as much as the oncologist and therefore, I couldn’t really answer the question. He seemed unsatisfied, but he did not press me.
I sought out the resident physician, my immediate superior, and confronted him. Wasn’t it true, I demanded, that Mr. Rivera’s prognosis was exceedingly grim? The resident acknowledged that the chance of remission was remote. I wanted to know what we should do next. The resident was shocked. What did I mean by “what we should do?” We shouldn’t do anything. It was not up to us to correct the oncologist or, worse, to undermine him. This oncologist was known to be extremely aggressive and there was nothing we could do about it.
I argued, but he had an answer for every argument, reminding me that we could only get into trouble for pursuing this issue. To my everlasting regret, I took his advice.
Mr. Rivera had a rough time with his first course of chemotherapy. He was very sick and his immune system virtually shut down. As a result, he developed an abscessed tooth, and despite powerful antibiotics, the infection spread deep into his jaw. He was in terrible pain, poorly controlled with large amounts of narcotics.
As the days went by, Mr. Rivera spent his time vomiting, shaking with chills, and writhing in pain. Because of his damaged immune system and the chemotherapy, he was unable to fight the infection and it spread further even though we were treating it as aggressively as we possibly could. Ultimately, the infection spread to bloodstream, and three weeks after he was admitted, Mr. Rivera died without ever leaving the hospital and without ever saying goodbye to his family.
The oncologist felt that we had treated Mr. Rivera appropriately. We had given him every chance to go into remission and have a longer life. I thought we betrayed Mr. Rivera in the worst possible way; we lied to him and we deprived him of the opportunity to die the death he wanted, surrounded by the people who were important to him. What really happened is that the oncologist had substituted his preferences for Mr. Rivera’s preferences. The oncologist simply could not imagine or understand that Mr. Rivera could want something different than he would want in the same situation, and so he ignored him.
In the grand scheme of things, Mr. Rivera would have died anyway, and I was a minor character in the drama that played out. But I cannot help but think that I colluded in a theft. We stole Mr. Rivera’s dream of a peaceful death and replaced it with vomiting, fever and pain. We had no right to do what we did; we were guilty of a terrible crime, not a legal crime, but a crime all the same.
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Comments
When I was in the Air Force I spend several years flying Aeromedical Evacuation. The Air Force has a fleet of DC-9 aircraft that have been converted in to flying hospital wards.
Our normal mission was to pick up people at smaller bases and take them into larger medical centers for treatments they couldn't get at their base, and home again.
On one mission I carried an older lady who was returning home to her family after cancer treatment. With her she carried a bottle of Jack Daniels that was mixed with a cocktail of pain medications and other medications to keep her from throwing up. Every so often you would see her take a swig from the bottle that was in a brown paper bag like you would see a wino do.
We had several long talks over the 3 days that I spent with her getting her home. She had gone to get the chemotherapy because that is what her family wanted her to do.
I will never forget as long as I live what she said to me as our journey was coming to an end. She looked at me and said "Harold, remember, there are worst things than dying".
What would have been about 1980. While I don't remember her name, I remember her story and her words to me.
I mean this as a well-intentioned comment: It is hard to picture you not arguing your point forcefully... at least based on how you are perceived here at OS.
But, organizational culture and how authority is deployed is one of the most challenging things people deal with at work. I'm not in the medical profession but I would imagine the arrogance of leaders is very high and the powers that be dole out consequences in very heavy handed ways. Tough call for yout at the time. I'm glad it is something you still think about. Not as self-punishment but as a sign of respect for patients.
I experienced this last week with my vet, who recommended every cancer treatment under the sun for my elderly dog. When pressed for real prognosis, there isn't much. She might get two years if we were extremely lucky. More likely less. And she'll spend the end of her life sick, ill, and going to the vet. We said no, but got at least three calls from two different vets at the practice, "explaining our options."
I think it's because a certain kind of doctor (or vet) Does Things. That's what they've been trained to do, so that's how they think. We can do X, and we might get Y. I think very few are trained to think about what NOT to do. They are not trained to think about what "First, do no harm" really means. It might mean doing nothing.
"I will never forget as long as I live what she said to me as our journey was coming to an end. She looked at me and said "Harold, remember, there are worst things than dying"."
What a powerful message. Based on what I have seen, she was absolutely right.
"It is hard to picture you not arguing your point forcefully... at least based on how you are perceived here at OS."
I was held back by my lack of experience and knowledge. As someone who was brand new, it was very difficult to go toe to toe with someone who had 20 years of experience.
"We can do X, and we might get Y. I think very few are trained to think about what NOT to do. "
Many medical professionals think that doing something is the default mode and doing nothing requires an elaborate justification. They claim that they are not making a decision when they proceed with treatment, but they are kidding themselves.
Doctors have a difficult job, sometimes having to tell people that they are going to die, and I can certainly understand the temptation to try their hardest not to have to say that.
"He never left the hospital and died less than a month later. I always thought he could have spent that month better."
I'd bet you're right.
"When I look back I realize how lucky we all were that the doctors there paid close attention to his wishes and also gave real-world advice about when chemo was called for and when it was time to stop."
It's nice to hear a story about compassionate caregivers.
"She went on all of the talk shows saying how she was in remission from breast cancer and then broke a rib and they found the cancer all over."
Every type of cancer is different. Breast cancer is one where you can go into remission for years, and then the cancer reappears as a metastasis. We still don't understand why that can happen.
"Maybe the oncologist had his eye on a new BMW."
Not in this case, because the doctor was salaried by the hospital and got paid the same regardless of the treatment he recommended.
Not to suggest further regret, but could you have privately pulled Mr. Rivera aside and quietly suggested he get a 'second opinion'? Told him that it was not in your best interest to undermine the oncologist and you'd appreciate his discretion, but to seek another doctor that may give him the input he really needed and deserved.
I'm sure he would have been grateful enough to not mention your hand in anything, and simply sought another doctor... or perhaps even skipped it and flown straight home.
http://www.lef.org/magazine/mag2008/jul2008_The-FDA-Indicts-Itself_01.htm
As a note to the author. I completely understand your position though. I think that times are different now and students are being made more aware of the fact that if they question things it is only to gain a greater understanding, sometimes that is what makes the difference for a patient. I hope that students now learn from this story that as a physician, in training, residency or in practice, speak up for the patients wishes even if it means questioning your superiors.
I hope that makes sense...It came out better in my head!
I can't help but feel a little sympathy for the oncologist, even as I feel his treatment was unethical. It seems to me that oncologists must watch a lot of people die, and that if you aren't really really passionate about destroying cancer, that the job would be pretty nearly impossible.
I also can't help remembering a friend of my mother's, who died many years ago. She had the same "What are my chances?" conversation with her doctor. The doctor told her, "I won't lie to you; your changes are not good and the treatment will be very unpleasant. But even if we don't save you, what we learn from treating you may help us save someone else down the line."
Which doesn't give your particular oncologist the right to lie to his patient and override his wishes, but it's something to think about for those facing a similar decision.
One year ago today I was post op R.simple mastectomy which was done on an outpatient basis for breast cancer. I am uninsured so all the bills came out of my pocket.
I won't bore you with too many of the details of the last year.
Breast cancer can be triple negative(bad) or anything in between.
Chemo? I practiced for hours psyching myself up for it.(Actually, I was worried like hell and read everything on the internet about breast cancer. I am an RN, so a little knowledge is a dangerous thing.) I had decided I would not buy a wig(too expensive) but would wear some attractive scarves so as to not frighten my patients as I would have to work during chemo no matter how ghastly I felt.
I work in a hospice, so I know all about breast cancer's tendency to metastasize with absolutely no rhyme or reason. So many of my patients have breast cancer.
A friend of mine also developed breast cancer. Both of us had lumps detected by the same man but that, they say is another story! She had chemo to shrink the tumor then a lumpectomy and radiation.
I wondered if they did a mastectomy on me instead of chemo and a lumpectomybecause it was cheaper.. As I explored post op chemo with an oncologist I found out just how expensive those drugs are. My friend was on Medicaid so cost was not a factor. My chemo treatments were going to cost either 4K or 13K per dose for from 4-8 doses.The 13K drug was very hard on the heart so I was going to need some fancy and expensive cardiac scan before getting the chemo.
I had some lively discussions with Dr. Rose, my oncologist.Lots of MD's refuse chemo for themselves because the side effects are so terrible. When I went for my 3rd visit to her, she blew my mind by saying "YOU DON'T NEED CHEMO OR RADIATION!" Sure enough, the survival rates with and without chemo were about the same. "But those statistics are for no positive nodes. I had a positive node."I rejoindered.My node was so small(2mm) that technically it was considered as no positive nodes. She even pulled up the statistics for 1-4 positive nodes and chemo didn't help survival that much more. My tumor was estrogen positive so I am on tamoxifen. That is also another story!
My chances of being genuinely "cured" of breast cancer are very good, even though no oncologist of any repute would use the "C" word.
My friend? Her cancer spread to the rest of her breast then to her lungs. She almost died from a pulmonary embolism/pneumonia episode which was a side effect of chemo.
Interns are almost as low as medical students who are almost as low as nurses! A great book which I just reread is "A Not Entirely Benign Procedure:Four Yeard as a Medical Student" by Perri Klass, MD which describes the heirarchy in thoughtful and entertaining detail.
Kay Helen RN
But this is a good example of why people should research their conditions, which is now very easy with the advent of the internet. There are reputable online resources that can be used to understand the diagnosis, and, if necessary, question the treating physician.
You deserve to forgive yourself. What differentiates you is that you learned from the dishonorable behavior of the attending physician. That's what makes this experience a "learning experience."
As my grandmother was dying from cancer, her doctors convinced her to have a surgery which:
1. Completely disabled her. (Prior to the surgery she was walking around and eating neither of which she could do on her own ever again afterwards.)
2. Caused her to suffer tremendously until the very end.
It would have been kinder and more humane to take her out back and shoot her.
Please keep posting. The world needs to know what you know.
"I think what this shows is that Medical Students need to understand the desperate need to stand up for the patient. Even if it means disagreeing with a higher authority."
It is interesting that you mention that. I left it out of the story, but the medical student on the team did try to do something. He spoke to the patient, although I don't think he told him flat out that his prognosis was dreadful, and he also spoke to someone in authority in the department. All that happened is that he got into trouble for interfering.
"He made it 2 weeks and died of a heart attack brought on by his chemo (he had no heart problems, ever)."
I'm so sorry. That is a terrible story.
"Dr Amy, given your years of experience, is there anything you would have told your younger self to do differently?"
I have the feeling that I should have done something differently, but, to this day, I can't figure out what it is.
"My friend? Her cancer spread to the rest of her breast then to her lungs. She almost died from a pulmonary embolism/pneumonia episode which was a side effect of chemo."
If only we could determine in advance which people will get the most benefit for chemo and which will be sickened without much benefit.
"That's what makes this experience a "learning experience."
That experience and several others like it inspired me to go back to graduate school part time a few years after I finished my residency. I took courses in philosophy and bioethics to try an understand how we had gotten to the place where we did things we were "supposed" to do, even though they were of no benefit to patients. I didn't figure it out, of course, but I have more insight into how we got here.
"It would have been kinder and more humane to take her out back and shoot her."
I said then, and I still say now, that when it comes to end of life care we treat dogs and horses better than we treat people.
I was married to an RN.
There were times she'd come home in tears from the way one or two of the self appointed gods would just shit on her.
She wasn't the only one as, I'd hear her talking on the phone with a fellow RN or two and, they'd all have the same things to say about these guys.
And, it wasn't only the way they treated the nurses.
It was also about the patients and the know it all attitudes of these two guys.
Would that have been your oncologist?
If that isn't a taint on the idea of being a "professional", I don't know what is.
I guess reality is beyond my grasp.
The worst thing we can say is that she let this man be treated by people who did not bother to see him as a person, and she did nothing to intervene. This case should rightly haunt her, and make her fear her own end of days.
Me, when I get to a certain point, I simply intend to take a bus to Helena, pick a direction, and start walking. I won't put myself into the hands of medical professionals, who are far more interested in the disease than the individual.
I am very, very thankful that my Dad had a surgeon as his lead doctor during *his* cancer treatment who, when they had passed the point where anything could really help him, was honest with my Dad and our family about the successful chances of additional treatment.
I don't know what the solution is, but I *am* glad to see that some doctors are taking the position of providing analgesic care to terminal patients, rather than pursuing aggressive, painful, and uncomfortable treatments with low probability of success. Here's hoping this tendency increases.
When that poor woman was mauled by the chimpanzee, I thought about this. She is surviving without a face, hands, blind and brain-damaged. I wondered if medical intervention to save her was actually doing no harm. We go to such lengths to save lives these days that (imho) would be best left to gracefully go.
Here's one: my forty-something college student told me and the class about her friend, the surgical nurse, a woman who loved her work and had always wanted to be a surgical nurse and nothing else. Assisting in surgery one day, the surgeon suddenly announced that he wanted to "try something". He had not discussed this with the patient or family, nor had permission of any kind been given for this procedure. The patient died in minutes.
Think the surgeon told the family the truth? You, of all people, know the answer to that one...NO FRIGGIN" WAY!!!! The family was told of "complications" or some bullshit. Meanwhile, the surgical nurse was shattered! She was so deavstated, so upset, that she gave up nursing, her beloved career, altogether.
Fortunately, I had a grandmother who thought ALL doctors were quacks, who never went to a doctor in her life, had three babies at home, never was sick or had health problems in her entire life, and at age 85, chose to die.
And despite being much better educated than my grandmother with an M.A. degree, I have researched the medical establishment extensively, and she was right!! It's a sham and a con operating for profit!
Presenting this as the current state of affairs in teaching hospitals is not accurate.
"But I couldn't have blamed her if she had decided not to trust me with the information."
Nurses are in a much more difficult position when they see the doctor doing something wrong. Fortunately she put your well being first.
"Would that have been your oncologist?"
I've seen plenty of lousy doctors, but I don't think that is what was going on here. The oncologist honestly believed that anything was preferable to dying, even if the treatment had only the tiniest chance of working. Most people are very happy with an aggressive oncologist. This patient, though, had made his wishes known very clearly, and the doctor ignored him.
A: God doesn't think he's a doctor.
sure, it's an unfair characterization, but there are some (many?) out there like that. in my experience, mostly surgeons.
"The problem is that this scenario is repeated every day as you probably well know!"
It is, and there is a related situation that is even more common. That's when the patient enthusiastically requests more treatment without understanding the suffering that the treatment entails and the doctor doesn't bother to explain it.
If Doctors are supposed to respect the principle of autonomy, how can such actions be allowed to stand? The hopsital bioethicist should have been informed. If there was no bioethicist, you should have spoken to the patient. By failing to do this, you are complicit in the wrong that was done.
Second, medicine is notorious for protecting its own, honoring "turf rights," and insisting that hierarchy be respected with due kow-towing. Think about the complications of reconciling this closed, rigid "culture" with speaking truth to patients or others. Especially for those like interns on the lower echelons of the pecking order.
Having read the post and followed the thread, I will definitely revise my "living will." (Totally goofy euphemism! It's a pro-spective dying will.) Enlist lawyers if you have to, relatives and friends, but please honor my wishes rather than the advice of narrowly-focused specialists or intimidated residents or interns.
As a wuss, I hope I die quietly in my sleep. As an idealist, I hope I die fighting for social and international justice. But I definitely do not want to die while wasting public and/or private money on a fatuously lost cause, and I definitely do not want to die in utter misery with tubes down my throat, catheters up my penis, and big-ass needles connected to tubes all over my body.
If you allow that to happen, relatives and friends, you will have sent me into oblivion with the shame of having denied everything my life is about. My spirit will return from the dead to put a bat up your nightgown or down in your shorts. Count on it!
outcomes.
Kay Helen RN replies: Your patient became a statistic, one
of many . These records have been
kept in tumor registries, research
protocals, etc. for years. Before I
went to nursing school I was in-
volved in some cancer research at the Clinical Research Facility at a major SE medical center. I still remember some of those patients even though that was back in the 70"s. I tried to get into Physician's Assistant school; the oncologist let me do some observation in his clinic to try to get "patient experience". I followed the Nurse Practitioner as she saw patient after patient. I got a working knowledge of cancer treatment in the 70's. It has been a fascinating experience to be a cancer patient myself in 2008. So much has changed but at the same time so much remains the same.
5-FU, etc. is still being used, but how the advances have occurred!
Kay Helen RN
I don't do well with medical professionals. Thankfully I have never experienced a catastrophic illness or disease and at 60 I feel blessed and lucky. But I am also ornery. Far too many doctors do not respect their patients and their desires. Far too many doctors refuse to listen, I mean really listen to their patients and therefore often make incorrect diagnosis or continue to prescribe medications that often cause more problems than not. Some soctors were arrogant before they entered the medical profession and they carry that arrogance with them.
About twenty years ago I had a doctor who told me, without hesitation, that if he had diagnosed that I had breast cancer, that he would not alloww me to seek a second opinion. After his revelation, I made sure that he was no longer my primary care physician.
Unfortunately for far too many people, good doctors are about as populous as good mechanics!
So, where can a patient in this country go for some honest care? I have hypothyroidism and epilepsy (both since infancy) and have had very bad experiences. Mostly with drugs that the doctor thought would be just perfect for me. On further investigation - my own iniative and time, on the Internet mostly - the drugs would be clearly contraindicated for someone with my conditions. I found this out the hard way twice, and then committed myself to pre-emptive research. Thank goodness, I've dodged several bullets since.
On one hand, doctors cannot know everything. There are advances and discoveries being made all the time, and while I keep up with my specific conditions as best I can, I couldn't possibly keep up with every single medical issue out there.
On the other hand, many doctors get defensive if a patient dares to gather outside information. The Internet specifically brings the ire out, which is why I always say my information came from the library (if at all). It angers me to no end when I ask a question about something, the doctor hasn't heard about it, and so s/he assumes I'm just a blathering idiot who believes every snake oil salesperson out there. Not everything on the Internet is true, but it's not all false either. Often I've just read through the .pdf of very small type that is the prescribing information for doctors coming straight from Big Pharma.
My health improved dramatically when I stopped looking to doctors for answers and started putting them in the same category as an auto mechanic. Questions will be asked, advice will not be followed blindly, and if I don't feel valued as a patient, my business goes elsewhere. Twenty-five years of feeling like crap evolved into feeling what I think is 'healthy' for the first time ever.
I am an accountant, and with U.S. medicine the $$ tends to answer many questions. I'm assuming the hospital would have received zero funds had Mr. Rivera left to die on his own terms. Surely they received funds from his insurance or Medicaid for performing the chemo and keeping him in the hospital.
This is a great story to remind us all of the value of second opinions. Still, Mr. Rivera probably would have received the same wrong answer from any doctor. I wouldn't go so far as to say you colluded in a theft...after all, you had no power in the situation. But the oncologist, definitely. The resident, maybe.
So, with the invaluable addition of hindsight, would you have done anything differently?
My husband says to me at times: you go to a doctor, he'll always give you some prescription... they rarely ever let you leave without something. Perhaps because that's just what they were taught at med school... you are hear to treat, so treat in any way possible. ANd so they get carried away with the "treatment" aspect, without acknowledging the humanity aspect of medicine, wherein they should care for the patients' wishes and desires, though they may be different from their own.