Why is cancer care failing?

The Institute of Medicine (IOM) recently released a report on the state of cancer care in the United States.  The IOM generally knows what it’s talking about.  It’s a non-profit, non-governmental advisory group essentially.  To get on one of their advisory boards you have to be a national, if not international, expert in whatever field is being studied. According to the cancer advisory board, the state of cancer care in the United States is abysmal.

Among the problems are:

1. Doctors don’t know how to treat cancers, despite numerous guidelines for every conceivable type of cancer written by such groups as the American Cancer Society. Doctors don’t know the latest scientific research.

2. Patients often have to coordinate their own care, despite large cancer treatment centers like Dana-Farber.

3. Patients don’t get truthful information about their prognoses and don’t get good palliative care.

4. Cancer care costs too much

Yikes.  Cancer care is basically failing on all significant fronts.  Now, ironically, since one of the IOM recommendations was to improve access to training IT, you can’t get the full report without buying it from the IOM or being a member.  They might want to re-think that.  In any case, it means I can’t tell you what evidence they used to reach these conclusions.  But if you can’t believe Dr. Patricia Ganz, arguably one of the biggest experts there is, who can you believe?

Cancer care is extremely complicated, no question.  If you find a mass, is it benign or malignant?  What type of cell is growing out of control?  How fast is it growing?  What biomarkers does it have to help you decide this?  What is the genetic make-up of the cells?  Should you surgically remove it or not?  Should you take it out and then do chemo or radiation?  Neither?  Both?  Should you include a pain specialist?  A palliative specialist? Depending on the tumor, maybe you need an endocrinologist, a liver doctor, a nephrologist, a urologist, a gynecologist, or all of the above.  What does the patient want?  What is the prognosis?  How old is the patient?  How much does the patient understand?  Who will help this patient at home?  Do you admit him/her to the hospital?  If so, when and why?

That’s just the beginning.  Add to that the Affordable Care Act deciding that some breast masses should not be called “cancer” at all, prostate cancer doesn’t usually kill you, and all the questions about screening.

But isn’t that why doctors spend 8 to 10 years training? Isn’t that why they do fellowships in cancer, then further specializing into certain types of cancer, certain locations? How is it possible that care is so poor?

I’m not an oncologist.  I can tell you anecdotally from patients I have cared for in anesthesia that all the technology is not helping.  Imaging is extensive, repetitive, and exhaustive.  Biopsies are inconclusive and have to be repeated.  One technology doesn’t reach the tumor so another is tried.  Each technology requires different experts, different machines, different locations, different appointments.  The more things we can tell in the lab about tumor cells the more imaging and laboratories we need.  All this is great if it improves our understanding and treatment of cancer.  But it’s not.

Even if all the technology helped, two of the major problems the IOM pointed out are patient-centered, communication problems.  Plain and simple.  We doctors have to talk to our patients.  Until they get it, or we do.  We have to give our honest opinion without worrying about scaring people, and we have to admit when we don’t know.

Communication is the key.

Shirie Leng is an anesthesiologist who blogs at medicine for real.

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  • guest

    pathetic

  • Suzi Q 38

    Your honesty is refreshing.
    If my cancer returns with a vengeance, I am going to ask what my chances are at beating it.

    If my chances are not good, I am going home and enjoying the rest of my life and family instead.

    • Marian P

      I hope that never happens, but I do recommend Hospice. Most insurance covers it in full, and you and your family will get a lot of extra support and care.

    • Chiked

      I hope you are eating an organic diet, avoiding any processed sugars, industrial lotions or creams. Doing that and getting enough sleep is your best guard against cancer. Many people can’t or don’t want to believe that are bodies are being assaulted by carcinogens like never before. It is not surprising to me that we are losing the war on cancer because our esteemed doctors have their heads buried in big pharma’s laps.

      • Suzi Q 38

        Thank you. Your advice is good.

  • Marian P

    There is a simple truth often overlooked. Metastatic solid tumors can’t be cured, with rare exceptions ( testicular cancer comes to mind). “Liquid” tumors like leukemia and lymphoma can b cured sometimes. So, if you have stage IV cancer of the lungs, pancreas, esophagus, ovary, colon, kidney, etc. you are going to die. Chemo may extend your life, usually for just a couple months unless you are a fortunate outlier. Therapy may cost many thousands of dollars and leae you broke and exhausted. Oncologists need to be clearer about this. I think when patients hear “palliative chemo”, they think, “chance of cure”. This is inaccurate and cruel. It is kinder to tell the truth.

    I think one of the chief IOM findings was that the recommended standards of care are not followed. Now, I work with very good oncologists who follow national guidelines. But patients are often too old, too sick, too uninsured, or too unable to tolerate the treatment. Patients in an oncology practice do not resemble patients in a clinical trial. They are older, sicker, and more functionally impaired.

    I work in palliative care so I am biased. But if we stopped spending so much money on useless or nearly useless chemo there would be a lot more for nurse’s aides and hands-on care, which are desperately needed.

    • kjindal

      You really hit the nail on the head Marian.

      “paliative chemotherapy” is one of the biggest oxymorons in all of medicine, and one of the reasons I quit oncology fellowship.

    • Shirie Leng, MD

      I tend to agree although some people think the extra few days it buys them are worth it.

    • Chiked

      Isn’t the truth that we are losing the war on cancer because we have neglected the body’s innate mechanisms at keeping cancer cells in check….a mechanism that is supported by proper (organic) nutrition, sleep and reducing stress.

      Our current approach to cancer treatment with chemo and radiation is barbaric at best and will be compared to bloodletting generations from now.

      Most importantly and shamefully pathetic, no one focuses on prevention. So you may have been “cured” of cancer today but shocked that it comes back. It did because you are allowing the genetic insults to continue. Focus on an organic diet, avoid processed sugar and chemical lotions, eat lots of veggies, sleep at night even if you are burdened with problems. This is all your body is asking and it will handle the rest.

      • kjindal

        if your child were to (god-forbid) develop acute lymphoblastic lymphoma, would you forego life-saving chemotherapy? Your post has lots of wonderful sound bites but unfortunately is lacking in actual specific evidence. Some chemotherapy is actually curative, but you must realize that the term “cancer” is incredibly vague, and should be looked at as hundreds (or maybe even thousands) of different disease processes with different causes (some multiple – look up the “two-hit hypothesis”, e.g.) and natural courses of progression. Also, do you not realize that there are lots of people who do exactly what you suggest and STILL develop cancer? Something like 1 in every 9 women will develop breast cancer at some time in their life.

        • Chiked

          My post was in response to why we are losing the war on cancer not what you should do if you have it.

          Yes, some chemotherapy can actually be “curative”, most of the time it is a horrible assault on the body.

          Following my suggestions does not guarantee you will not get cancer but will do a lot more than the billions of dollars spent on cancer research and looking for a cure.

      • Shirie Leng, MD

        Thanks Chiked. Like many disease processes today, some of the treatment lies in behavior modification. But Cancer is a little different, since in general people don’t have control over the gene or cellular mutations that start the process. The cause of type II diabetes is pretty well know, so we can point to life-style modifications with some confidence. Since the causes of cancer are still largely unknown and the causes are so numerous, it is hard to tell people they have “allowed” their cancer to return. We need a balance of wholistic and medical approaches.

  • Guest

    How much do you think is contaminated by the fact that oncologists may gain financially from prescribing and administering the chemo? It’s an ugly side of cancer care – maybe the ugliest – but as long as medicine is a business it’s going to happen. Why send patients home to die when you can make a few bucks on the chemo that you’ve falsely led them to believe will give them a chance?

    • Marian P

      Hard question to answer. I am fortunate to work with very good and very busy oncologists who are very ethical and good about talking to patients about when it may be time to stop. And I think the oncologists themselves are increasingly distressed at the absolutely outrageous prices being charged by pharmaceutical companies, even for drugs like Gleevec, which has been around for a while, so they an’t claim they are still paying for the R and D, much of which is funded by NIH anyway.

      • kjindal

        they are upset w/gleevec because it is a PILL, ie. they can’t administer it intravenously in their office, reselling it at a huge markup and making an infusion fee in the process. In the late 90′s and early 2000′s this was rampant, many oncologists were making $1M+/yr, Then medicare got smart & nixed the reselling markup, and oncologists often gave up doing outpatient chemo.
        “why do they nail a coffin shut? to prevent the oncologist from giving the last dose of chemotherapy!” ha ha.

  • Chiked

    Of course genetic mutations can occur but does not explain the rates and types of cancer we see today.

    I am actually not hopeful we can find a cure for cancer because we are thinking about it all wrong. We are looking for a drug that will go in and destroy the cancer cells but leave the host cells intact. That is like trying to develop a bullet that will only kill the burglar but not the home owner. Why not work on preventing the burglar from coming in, in the first place.

  • Claire

    You are not an Oncologist… yet you make massive blanket statements like this:
    Among the problems are:
    1. Doctors don’t know how to treat cancers, despite numerous guidelines for every conceivable type of cancer written by such groups as the American Cancer Society. Doctors don’t know the latest scientific research.
    What “doctors” are you referring to? PCP’s? Internists? Good, they shouldn’t know how to treat cancers. That’s not their job. Have you been in a tumor board at an academic hospital – the places where the research itself is actually being conducted, BY physicians treating said cancers? If that’s not the latest scientific research I don’t know what is.
    2. Patients often have to coordinate their own care, despite large cancer treatment centers like Dana-Farber.
    Again… Have you been at an academic hospital? In my ONE cancer subspecialty (among about 20) we have 3 nurse coordinators and countless patient liasons who do nothing but coordinate patient care all day. Maybe in private Oncology world this is different, but at real, NCI Designated, actual cancer centers this is not the case.
    3. Patients don’t get truthful information about their prognoses and don’t get good palliative care.
    Terrible blanket statement…. again, maybe in private world this may be more accurate, but nothing sucks more than telling patients you can’t help them. We do it all day, every day.
    4. Cancer care costs too much –
    This may be the only relevant thing you said. Maybe focus on THAT instead of attacking physicians and cancer care providers who are actually on the front lines of these diseases…
    Next you mention that the affordable care act “deciding that some breast masses should not be called “cancer” at all” – well that’s because they’re not ALL CANCER. Therefore, they should not be treated as such and cause a panic. You contradict this philosophy of treating every breast mass as cancer by saying – “Imaging is extensive, repetitive, and exhaustive. Biopsies are inconclusive and have to be repeated.” Welcome to America, home of the letigious. Where watching and waiting and practicing cost effective medicine will get you sued.