From the Grace Archives | Originally Published July 30, 2011 | By Dr West 

Our weekly thoracic tumor board, a multidisciplinary meeting with multiple specialists in thoracic oncology all converging together to discuss management possibilities for challenging cases, has long been a highlight of my experience at my institution. I really enjoy working with my colleagues, and we have good discussions that sometimes reach a clear consensus but are always thought-provoking.

I wrote recently about the challenging theme of balancing overtreatment vs. undertreatment in patients with locally advanced NSCLC who might or might not benefit from surgery after chemo and radiation. But another extremely common case we get, and which has become a source of heated discussion to the point of raised voices, is the person referred out of desperation felt by the referring doctor and/or patient with what is generally considered incurable disease for “Hail Mary” surgery or radiation, or both.

Historically, some patients have undergone metastasectomies (surgical removal of metastases), and manuscripts in the surgical literature have consistently shown that some fraction of cherry-picked patients can do very well for a long time, with years of long-term survival. These same reports have consistently shown that the people who do best have an unusually indolent cancer (multifocal bronchioloalveolar carcinoma has been among the cancers for which surgery has been pursued), often with a prolonged disease-free interval between initial cancer diagnosis and treatment and then subsequent appearance of the metastasis (or metastases), and fewer metastases/areas of active disease.

What all of this work essentially shows is that people who have many features that already predict for an unusually favorable outcome compared with other people with metastatic/recurrent disease can continue to do well, possibly because of, but also potentially despite, more aggressive treatment that has no proven role. The people who have an unusually slow-growing cancer will often be alive and doing relatively well many months or a few years later, but that’s exactly how they found their way to the more aggressive care: the people with widespread metastatic disease that followed the more typical statistics never had the opportunity to pursue surgery or stereotactic radiation. And even beyond the factors related to the disease, the patients most likely to seek and be offered more aggressive treatments are the youngest, healthiest, and most aggressive people — factors that also correlate with doing better regardless of the treatments pursued.

There is certainly a chance that these treatments are helpful, but we really don’t know. What we do know is that there are many incentives to pursue them, from all sides. First, of course many patients want the most aggressive treatment possible: “I just want it out” is something we hear commonly, and many patients and caregivers mistakenly presume that surgery is somehow the magic key to cure — while there is more people being cured after surgery than after other treatments, this is very much a product of the fact that surgery is appropriate almost exclusively for patients who have a chance to be cured, while chemo and radiation recommended for much broader populations, including who many who we can’t realistically consider being treatable with curative intent right from the time of their diagnosis.

Second, doctors involved in their care also have a few incentives to advocate for more aggressive care than has an established value. They want to give their patients the benefit of the doubt, to give them the chance to do unusually well. At the same time, like patients and caregivers, they/we share a mentality that more is often better (at least in the US), and at the same time it’s often easier to just offer more than to have the difficult conversations and accept that metastatic disease isn’t likely to be curable — we offer surgery and radiation because it’s the feel good easy answer, the medical version of a politician’s pledge to lower taxes and promise prosperity. Still, our surgeons and radiation oncologists convey that it’s not rare for them to receive referrals from doctors or patient self-referrals that are simply ludicrously inappropriate.

And beyond that, physicians often have a good financial incentive to treat beyond the conventional standard of care. Surgeons are paid to do surgery, radiation oncologists are paid to do radiation — and the institutions where they work also typically profit and gain market share by offering treatments beyond what is considered a standard of care, especially since many of these treatments like stereotactic radiation are among the more expensive and profitable treatment offerings.

When I raised the point that I was concerned we were offering surgery and radiation to people who have essentially no realistic chance of benefiting from them, one challenge I received was that later lines of chemotherapy and targeted systemic therapies are truly no different: we provide them not because of the compelling evidence of benefit, but because people all but demand them, we hope that they might help, oncologists are often incentivized (i.e., paid more) to deliver treatments, and because it’s easier to offer one more line of treatment than to invest the time and emotional energy in a difficult conversation that you know most patients and caregivers don’t want to have, even when it’s appropriate or even necessary. In fact, futile chemotherapy for people with a poor performance status and/or already heavily treated is one of the identified culprits for the extremely rapid rise in costs of cancer care and one of the identified ways to cut costs without compromising survival. So medical oncologists are certainly not immune, and even if I argue that light weekly chemotherapy is less toxic and therefore perhaps more permissible than a futile surgery, it’s not always less expensive, and I can’t argue with conviction that this isn’t just a rationalization. Moreover, it’s not as if I’ve never recommended surgery or radiation for unusual and ambiguous cases: I just judge that mycases are more appropriate than the more egregious ones that are sometimes discussed. But yes, it’s a slippery slope.

The consequence of this probable over-treatment of many patients is not just that they are receiving the risks and adverse effects of treatments for which we all, patients and doctors alike, collude to over-imagine the benefits and under-appreciate the negative aspects, but also that we’re just burning money on treatments that don’t end up helping people. I know that to most readers, concern over societal costs of care for their cancer or that of a loved one isn’t a factor, but more health care organizations are being shifted to new models that no longer reward doctors and institutions for more treatments, especially without an identifiable benefit, and may even penalize them for it. In that case, would doctors be as inclined to pursue treatments without a clear role, largely because patients and families seek them? I suspect there would be a big shift in treatment patterns.

Moreover, these kinds of interventions may be viewed more critically before being covered by payers. If these interventions weren’t covered and then passed on to the rest of society, I don’t know that patients and caregivers would be anywhere nearly as inclined to front the costs of treatments that cost tens or hundreds of thousands of dollars with dubious benefit. Is the hope of a possible benefit enough to seek a treatment if payers only covered the treatments that have a proven role?

Finally, I’ll conclude by saying that I know these issues hit close to home for many people here, and I don’t mean to disparage or trivialize any of their efforts. As I convey above, I follow my own judgment and often recommend treatments beyond the proven established ones. We all have our own complex interpretation of risk, benefits, and resource allocation. But I think we need to step back and acknowledge the complexity of so many factors, as well as our own biases. At the very least, it’s worth remembering that more is not always better.

We may well be wrestling with many new questions in coming years, reflective of changing incentives in health care.

I welcome your thoughts and hope I’ve only pushed the right buttons to get people thinking but not reaching for pitchforks and torches.

Responses:

• DianaJ says:

  July 30, 2011 at 2:08 pm

  Your discussion regarding “more is not always better” reminds me of how fearful and desperate people can become when death is very close. I saw this with my father in law who at age 93 was desperate for more Surgery as his body functions closed down. I’ve thought of how I don’t want to be bedridden, yet would I want more treatment that might give me a poor quality of life for one more month?

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  kej says:

  July 30, 2011 at 4:36 pm

  My MIL got diagnosed with stage IV, NSCLC October 1998. At that time, chemo was not standard for stage IV patients here, only options was pain management and ultimately hospice. Oncologists typically said that a)chemo gives bad QOL, b) stage IV patients cannot be cured – so why go through chemo? She died less than four months after the diagnosis.
  Because patients, caregivers, the industry and ambitious doctors kept saying “what, are you serious, you do not even try?” this attitude was changed, admittedly probably much to the satisfaction of the industry that tried to develop treatments and drugs to deal with the adverse side effects of the treatments.
  And now, we exactly see what Dr. West points out: an increasing number of stage IV patients live for years.
  Doctors and the industry, please keep on trying.

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  ts says:

  July 30, 2011 at 7:55 pm

  On the other hand, my Mom had lung cancer that was first discovered as a brain tumor, in 1983. She was put through surgery, radiation, and chemotherapy and suffered greatly for the last two months of her life. How will we ever know who to treat in hopes of prolonging a life and who to let go in hopes of preserving dignity? It was a heavy burden for me to carry into treatment, and mine sometimes has felt like over-treatment – but the response has been very good and so is the overall quality of life. How will we know?

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  kej says:

  July 31, 2011 at 2:23 am

  ts,
  You are absolutely right, how will be know?
  The essential thing for me is the overwhelming difference between the two scenarios you and I have witnessed: my MIL was not even offered treatment. Someone else took the power to decide it was not worth it. Extremely intimidating being deprived of influence on something as basic as an attempt stay alive.
  Reminds me of a vet consultation: the animal’s fate is decided by someone else.

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  JimC says:

  July 31, 2011 at 7:30 pm

  kej,

  I think the crucial element in the situation you describe is that it occurred a number of years ago. I believe that the vast majority of oncologists today would offer your mother-in-law treatment, even if some still might not recommend it. And the response of many doctors to self-educated and actively involved patients has greatly improved; if a patient in her situation today requests treatment options, she is more likely to get them.

  I think the problem described by Dr. West stems from the existence of the much greater array of treatment options currently available. That leads to difficult decisions about whether to try that fourth or fifth line of therapy when there is a vastly greater chance of causing harm than receiving a benefit. Though the decision to forego that next treatment should always belong to the patient, the honest input of the doctor is crucial to making an informed decision. The decision should be the result of a true collaboration between patient and physician.

  Jim

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  messagejim says:

  July 31, 2011 at 7:50 pm

  Great discussion. My surgeon and first oncologist did not really want to discuss the possible risks of chemo or surgery even though the benefit in my case was debatable. They both said “you want me like this.” Almost seemed to be saying that overtreatment is the better way to go. I have learned on this site that many patients have the same view, and each person is entitled to their opinion but the doctors have a duty to not assume that all cases are the same and spend the time with the patient as necessary so they can make an informed decision whether to pursue treatment.

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  ssflxl says:

  July 31, 2011 at 10:36 pm

  I hope that science/molecular genetics will help to determine who will benefit/respond from certain treatment and who won’t. when we have this ability, then the conversation will be much easier. Of course, you also need to consider the patient’s functional status too!!

  ssflxl

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  FaithAndHope79 says:

  August 1, 2011 at 9:29 am

  “I just want it out” sounds so familiar to me. I guessed when we were first diagnosed the mixed feelings of shock, madness, anxiety, depression, disbelief, etc. made most of us have that kind of initial thought. I think the longer we fight cancer, the more we learn. The more we have learned, the more thoughts we put into our treatment plans. Personally I would like to balance treatments and my physical condition, because I think/feel when physical condition is not well enough, negative thoughts easily set in, which is dangerous especially when I am fighting cancer.

  Jing

  P.S. Dr. West, over the weekend you posted two articles and answered questions. Your tireless work on GRACE is greatly appreciated. Thank you!

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  messagejim says:

  August 1, 2011 at 11:00 am

  I have often wondered since my surgery why every cancer center in the country doesn’t give patients information about Grace upon diagnosis. At a minimum, those of us that ask many questions should be given the information. Many of us just stumbled across Grace and the additional information. More information to the patient would lead to less overtreatments or at least informed overtreatments

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  Rita says:

  August 1, 2011 at 2:11 pm

  Thank you for this post, Dr. West. Yes, this is oh, so difficult. As others point out, how will we know? So far, my husband (Stage IV at diagnosis, spine and brain metastasis, adenocarcinoma w/ BAC features) has “beat the odds.” If we and our doctors had given up, expecting that he was too far gone from the get-go, he’d indeed be long gone. He’s had quality of life for almost 2 1/2 years, has witnessed our daughter’s college graduation, our 25th wedding anniversary, even a few vacations. God bless doctors and families who don’t give up.

  And yet, I understand how difficult this is, both at the individual and societal level.

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  Apra says:

  August 7, 2011 at 10:20 am

  But over treatment may be better than under treatment. I find that many people make a wonderful recovery if the doctors don’t give up. Hope, that wonderful gift from God keeps us going enbaling us to beat the odds. So I would want a doctor to pursue as much treatment as possible for loved ones and never give up. Miraculous turn arounds are known to happen.
  Yes Dr. West, your tireless efforts are appreciated. Your contribution to the world of Lung Cancer can never be measured in this life. Treasures are laid up for you. I will pray that many doors of recognition open for you.
  Apra

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  bcharlie says:

  August 7, 2011 at 7:39 pm

  I feel the same as Jim. Grace should be mandatory reading for all Cancer patients. CB

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  myrtle says:

  October 12, 2011 at 12:21 pm

  I have been catching up on the posts I missed while I was down and out this summer when I came across this gem. It is such a difficult subject and so hard to know if we are making the right decisions. I often think if I had known at my own diagnosis how slow growing my cancer would be, we could have made better treatment choices, but I also know we cannot tell until time passes and treatments are given.

  I agree with what Jim said about how much more we know now than a few years ago. There were several things I felt I had to advocate strongly for that patients seem to receive routinely now. There is still so much more to learn and I think if we could somehow upfront have a better idea of how quickly or slowly the cancer will progress, we could choose treatments that would be more efficient both financially and in terms of patient comfort and quality of life