Oncology: the art of beating dead horses

[Surgdude]

I am not in internal medicine--I am a Surgical resident

Imagine yourself being called to a code. You get there on the oncology floor to find out that no one has addressed code status on a person with metastatic cancer, cachexia, and essentially no possibility to make it out of the hospital.

Or...

Imagine that you are the surgeon being consulted for placement of a port on a patient with colon cancer metastatic to both lobes of the liver. As the consultant, you start to get the feeling that this person, despite being seen by the oncologist and being admitted to his/her service, has never been told that he/she will die of her disease, or if so, that the median survival is 6 months.

I am a bit of an instigator (sp?). Actually, most of the IM people that I deal with are much better at obtaining code status than the surgeons are. However, I have found that the oncologist are absolutely the worst at establishing the nature of peoples' diseases to them. Why must the consultant for the port be the ones that "break the news" to them that the patient will die soon of their disease? Why is there a breakdown in the system for the people that should me the most atuned to this issue?

I have a few answers:
Do you know why they put nails in coffins? To keep oncologists out!

Joking aside, I think that there is a disconnect between what is done and what should be done. I depend upon the oncologists and truly respect the medicine that they practice. I am glad that they are there, as they will cure many of my patients with microscopic metastatic disease. However, in my institution, they do a rotten job of fully establishing the gravity of prognoses with the patients.

Is it money? They get paid a lot to continue chemo or XRT on patients that won't benefit significantly. I have very recently had a rad-onc doc fill me with a line indicating her magical beams would help cure local and metastatic disease.

I guess I just wonder where reality goes when one begins fellowship in onc.

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[docslytherin]

hi. i obviously have less experience with what you're dealing with. i've worked in an oncology clinic of more than 20,000 patients for over a year now. from my interactions with the patients and the physicians, it seems to me that many times the lack of complete disclosure of the severity of disease isn't a denial of short life expectancy for the patient as much as it is an admission that many times , the docs just don't know how long it will take. on many many occasions i have heard the docs asked "how long do i have?" and the nearly universal answer is "i don't know. it depends." that seems like a terrible answer for someone looking to deal with nearly certain death, but for the patients it oftentimes provides them with a sense (though sometimes terribly small) of hope that they won't be a part of the 6 month survival statistic. the median survival is a statistic and while based on collected data, isn't absolute. there are people who live longer and people who die sooner. i would hate to tell someone that he/she had 6 months to live and then have them only end up with 2. perhaps it's possible to explain the severity of the disease and the certainty of the outcome without quantifying the time that remains.

 

[Celiac Plexus]

Originally posted by docslytherin
hi. i obviously have less experience with what you're dealing with. i've worked in an oncology clinic of more than 20,000 patients for over a year now. from my interactions with the patients and the physicians, it seems to me that many times the lack of complete disclosure of the severity of disease isn't a denial of short life expectancy for the patient as much as it is an admission that many times , the docs just don't know how long it will take. on many many occasions i have heard the docs asked "how long do i have?" and the nearly universal answer is "i don't know. it depends." that seems like a terrible answer for someone looking to deal with nearly certain death, but for the patients it oftentimes provides them with a sense (though sometimes terribly small) of hope that they won't be a part of the 6 month survival statistic. the median survival is a statistic and while based on collected data, isn't absolute. there are people who live longer and people who die sooner. i would hate to tell someone that he/she had 6 months to live and then have them only end up with 2. perhaps it's possible to explain the severity of the disease and the certainty of the outcome without quantifying the time that remains.

The point is that the patients should be told what the survival rates are. AND they should be told that a small percentage of patients will die later, or sooner... but that MOST patients with (fill in the blank) cancer will die within (fill in the blank) time range. That is a hell of a lot different than simply shrugging and saying, "I don't know". Patients deserve to know this information.

 

[WakeMedHeel]

The point is that the patients should be told what the survival rates are. AND they should be told that a small percentage of patients will die later, or sooner... but that MOST patients with (fill in the blank) cancer will die within (fill in the blank) time range. That is a hell of a lot different than simply shrugging and saying, "I don't know". Patients deserve to know this information.

I disagree. I think saying, "I don't know, it depends." is a perfectly acceptable answer to which the physician does not have an answer. A patient should be told the statistics if they want to know the statistics. I'm not a fan of physicians quoting stats because once you see your patient as a statistic they cease to be your patient, and they become just another person with cancer. People get hung up on statistics and you can rob someone of the will to fight by telling them they only have 6 months. On the other hand, if someone wants to know the numbers, you can just as easily motivate them to live longer by giving them a target to beat. Either way, each case is extremely individualized and IMO, throwing around survival rates without consideration of that individual patient is counter productive. The patient should be asked if they want to know the statistics, but that these are only statistics of survival and that their battle with cancer will be extremely personal and individualized.

 

[Surgdude]

The point of my posting really didn't have anything to do with telling people when he/she will die. Obviously, none of us have a very good way of defining for people when that will happen.

The point that I was trying to make, and must not have, is simply the honesty that Patient X will likely die of his or her disease if they don't die of something else first. This doesn't exclude the outside chance of cure, or even beating the odds and living significantly longer than the median life expectancy. What I am trying to indicate is that some of these people being admitted for these diseases are experiencing complications of their diseases or treatments. Often, they are not really the healthiest people, and have little reserve. There is little room for complication.

Realizing one's own mortality in the future, even if it is distant, is important. Having the honest dialogue for the patient to consider what he or she wants to happen in the case of a catastrophic event is important, as it allows for the patient to have some control over how the disease will affect his/her life and death. I think it is essential to give these people that opportunity rather than to leave it to the family in a time of extreme crisis when emotions run very strong, and people will doubt their judgments the most.

 

[womansurg]

End of life is an event, a chapter that all of us will play out. Family members virtually never want some protracted, painful death in a busy, distracting clinical environment. Would you want that for your loved one?

We all carry the memories of how our loved ones die with us for the rest of our lives. As many of us know, probably not a day will go by that we don't think of it in one way or another. As physicians, we do a disservice in our role as caregivers when we don't communicate plainly enough so that people can make honest, heartfelt decisions about what should be a very honorable and spiritual time in a family's lives.

I agree that oncologists often seem paradoxically unable to handle this type of counseling, which is unfortunate beyond words.

 

[abu barney]

One of the most unforgettable clinical encounters i have been in during my medical education has been with an oncologist. He was seeing a patient in clinic whom two days ago came to the ER complaining of RUQ pain. U/S was done and in the ER they flat out told her she had liver mets of unknown primary and she'd be dying pretty soon. She came into the clinic absolutely crushed, and she was sobbing her heart out. The way the doctor listened to her concerns, provided practical info on survival and treatment options, and just dealt with everything in such a delicate manner was absolutely amazing. At first he would not give a survival estimate, but when pressed he let her know that she has about 6 months, emphasizing that she can very possibly live for another 20 years. He listened to what personal issues she wanted to come to term with before she might die: a daughter to visit, and other simple yet meaningful things. He also strongly emphasized the highly variable effect of chemo and its side effects. From what I've seen, most patients themselves are willing to put up with the side effects for the hope of living a few more months. When put in the situation of addressing your own mortality, I believe most of us would take that course too. The doctor certainly did not coax the patient into taking chemo so he can get paid. This particular patient refused any chemotherapy, saying that she did not want to die with a wig on. I wish her well .

I know this is not representative of all oncologists, but, the doctor who demonstrated to me the strongest skills at comforting and addressing a dying patients needs was an oncologist. It is indeed saddening if most oncologists do not practice this way.

 

[WakeMedHeel]

In my own personal (much more personal than I care to get into on a message board) experience with oncologists, I have been impressed with their candor and honesty. I'm sure there are oncologists out there that aren't completely forthcoming but I've seen plenty of docs in all fields who aren't willing to convey the entire picture to a patient. It's not just oncologists.

 

[Eidolon6]

I disagree with womansurg and Surgdudes assumption that oncologists fail to address these issues. My experience in oncology leads me to believe that often times our patients make the decision. Surgdudes experience aside. I remember discussing code status almost daily with one of my leiomyosarcoma patients, to no avail. I had data, statistics, graphic details. Cancer patients seek oncology because in most cases, its the only thing offered to potentially cure or palliate their disease. I think oncologists are more aggressive in that their treatment often takes the patient close to graver illness. I don't remember any of my oncology attendings directly avoiding code issues or encouraging a patient to be a full code, no matter what. The best that can be done for the patients is to present them with the data and the options and let them decide, beyond that, it is out of your hands. Surgdude's comment about the "art of beating dead horses" sickens me...as I take care of some of these "dead horses", have worked very hard for them, and have called a few my friends, they deserve some respect for what they face, often stoically.

 

[womansurg]

Being from the same hospital system as Surgdude, I can affirm his position, at least with regards to the folks that we work with here.

We'll be consulted to put a line into an end stage, elderly cancer patient who has been in and out of the hospital, and in the course of consenting for surgery, bring up the subject of code status. It is often painfully obvious that this is the first time that they have been approached with this topic. Ironically, almost without exception they prefer to be designated as 'no code' once someone explains to them what that means. It's no surprise: that's the same decision the you or I or any loving person would make for ourselves or our loved ones. Of course they don't want to be flailed on in some perverse, useless attempt to delay death by a few minutes or hours. They want to pass gracefully, peacefully, and that is what their families want as well.

I'm certain there are many, many oncologists who are wonderful at dealing with these situations. We just don't seem to have any of them here.

 

[Voxel]

I have intimate experiences with cancer patients and oncologists. I find myself addressing code status with many of them during their admission. I have discussed and documenttd DNR on many patients, by myself. And I usually do not wait for attendings to bring this up. It's just my philosophy to bring it up.

I realize that this discussion is psychologically difficult for both the patient and some physicians. Many of the oncologists treating metastatic solid tumors (excluding lympoma and testicular cancer), discuss DNR status quite readily especially after the 1st or 2nd relapse from palliative chemotherapy. Many of the oncologists on cancers that are potentially curable ie lymphoma, testicular cancer or to which death may be more than 1year away ie untreated metastatic breast cancer will not discuss DNR with their patients. Most have a rational to do this, including psychological factors relating to the patient, ie keeping hope alive, and getting things done for their patients that surgeons and IRs would try to avoid if the patient was DNR. I've seen it with my own eyes, it does happen. Thus, witnessing what goes on, I don't blame the oncologists. Also I notice a subtle and sometimes not so subtle treatment of the patient by nursing staff, house staff, and attending physicians when a patient is DNR.

In any case, DNR is a highly personal issue that should be addressed in timely manner. Hopefully by the physician who has a personal relationship with the patient. Many oncologists are good about it, but I agree there are a small percentage of oncologists that seem to prefer not to bring it up often enough as I would prefer. Again, medicine is many times more art than science.

Last time I checked a surgeon can discuss DNR status with the patient just like a FP, IM, or future radiology resident.

Lastly, even though for many metastic cancers the median survical time is less than 9 months, we cannot predict what the future holds for this particular patient. We truly do not know. We are not God. I have heard of metastatic melanoma, renal cell ca to spontaneously regress. I have also personally heard of a patient with metastatic melanoma to have a complete response to a chemotherapy agent that has no proven survival benefit in melanoma. It's very rare but it does happen.

Full court press?

Regards,
-Vox

 

[Voxel]

No one denies that more chemotherapy equals more money for the oncologist. However, it is very cynical to say that some oncologists will not discuss DNR so that they can give more chemo to make more money. (The same arguements can be made for surgeons who do operations that can be deemed as borderline beneficial and definitely carry risks above and beyond the non-surgical alternatives).

If a patient desides to be DNR, this does not automatically preclude the medical oncologist from giving more chemotherapy. Many patients may decide not to receive more chemo once they decide to be DNR, but many/some patients can make the distinction between the concept of DNR vs the concept of do not attempt to treat.

While I agree that once tumors relapse from 2 different regimines there's probably little benefit to more medical benefit from diifferent chemotherapy in solid tumors with the exclusions posted earlier. There are sometimes other factors that may come into play. There is the psychological factor that patients may be able to cope better (or cope at all) knowing that something (potentially) is being done (ie chemo or xrt) even though this will not result in complete or even partial response (%50 tumor reduction). They have to be informed of the effects of chemotherapy on the quality of their life. The matter of quality of life is in the eye of the beholder and both physical and psychological factors must be weighed . It must be weighed by the patient as as the physician.

Lastly, one can always argue that the ends justify the means. And that people are making excuses in order to earn money. For the most part I would like to believe that this is not the case. I don't know the specifics of your hospital and the oncologist at your institution. So I cannot comment on their motives.

Disclaimer: Hypothetical case. Not to misconstrued as a real occurance.

Do the ends justify the means?

Let's say you told the patient that no further chemotherapy was proven to have a survival benefit in terms of increased survival time and although some may receive some palliation from the chemo that it will in all likelihood palliation will be small (although noone can predict with certainty in a particular patient).And this person is very wealthy and does not need/have insurance. They further state that you and the hospital (let's say an academic medical center hypothetically) will receive a large some of money for providing them with chemotherapy. And upon their death they leave in their will a large amount of money for cancer research going directly to the hospital and a t trust fund will be set up for the medical oncologist so he can spend more time with his patients in clinic without any of the financial pressures. faced in today's world of medicine. What would you do in this sort of senario?

Food for thought.

 

[Surgdude]

Voxel brings up an important point regarding the ethical nature of continued treatment in the face of economical benefits from a wealthy benefactor.

However, I take issue with one of the earler statement in the message: that continued treatment in the face of minimal odds of success may add comfort to their lives as they are continuing to "do something to fight the cancer", i.e. not fully giving up.

I don't claim to be an economist; in fact, the little knowledge I have was from a book on tape I listened to this weekend (surgeons can't read, as you medical types all know). In its most basic terms, there is a finite amount of money and resources that can be allocated to healthcare. By treating a patient with a terminal disease with expensive medications and expensive hospitalizations, we are essentially robbing Peter to pay Paul, depriving other patients of the benefits of medical treatment.

Some of you may be thinking, "That's a crock--people aren't turned away from medical care because 'the system' has already used up its alotted amount of money", which is true. However, those costs are experienced by everyone by the higher premiums that are being paid by the individual or the employer. I don't think that oncologists are necessarily trying to line their pockets better by continuing seemingly futile care. I do think that physicians in all segments of the health care should participate in responsible stewardship of the healthcare dollar.

The alternative is this. We continue on our course of wasteful spending on futile care in all specialties. The healthcare system essentially becomes like the military complex of the USSR, saddling the country with an expensive system that it cannot afford to maintain. Finally, there is collapse, anarchy, and a great crying and gnashing of teeth, regarding the healthcare system. Knowing that each congressperson and the president's likelihood of re-election in this state of crisis is to pass sweeping legislation that will create universal, affordable healthcare, which will essentially require some form of rationing to be instituted. Then, it is no longer us who gets to make the informed decision--instead, it is the bureaucrat who assumes our autonomy.

Take your pick.

 

[Voxel]

I am all for prudent rational use of resources. I think the main problem lies in self-referral and CYA medicine. People who can self-refer do plent of marginally justifiable or plain unjustifiable procedures and diagnostic tests. Also, people who order every test in the sky to cover their rears have a lot to do with rising costs of health care. I don't think there's much we can do about the first point unless we can convince the federal government to strengthen the Stark Laws. Lastly, I think there's not much that we can do to prevent CYA medicine unless we get real tort reform at the federal level. The tort reform probably has a more meaningful chance of being amended than stark laws. In fact I think the controlling party was trying to weaken stark laws. Oh boy. Talk about healthcare spending out of control.

 

[Surgdude]

I haven't kept up well with the legislation. Could someone please define for me the Stark laws? I am familiar with tort reform.