Saying no to your oncologist is sometimes the right thing to do

Cancer is a dreadful disease. Just dreadful.  Make no mistake: I have tremendous respect for the awesome doctors who treat patients afflicted with it day after day. Still, paradoxically, I can’t help but notice that some of them have just as hard a time as do other doctors with caring for patients at the  end of their lives. I believe a large part of their difficulty stems from the ridiculously dysfunctional either/or approach to palliative care and hospice we’re stuck with in this benighted country.

The problem is that in order to qualify for hospice, patients must not only have a certified life expectancy of less than six months, but they must also not be undergoing any active treatment for their malignancy. When you stop to think about it, though, this is actually quite discriminatory. We don’t require people on hospice with other diagnoses to discontinue their life sustaining medications. Patients with COPD are allowed to continue their bronchodilators; CHF patients don’t have to stop their ACE inhibitors and digoxin. But if a cancer patient wants to qualify for hospice, they have to forgo curative treatments like chemotherapy.

So what if the oncologists call it “palliative” chemo instead? That still sounds too much like “giving up”, and that is something that too many oncologists are loath to do. Not only to do, but to even think about. I actually heard one oncology colleague of mine tell a mutual patient, “I’m in the business of hope.”

“Hope” for what? There comes a time, usually after several recurrences of a cancer, when it becomes more rather than less clear that more treatment is not going to help (by which I mean “meaningfully prolong the patient’s life”). This is the key point in the doctor-patient relationship where too many oncologists fall short.

I have a patient with an aggressive, recurrent malignancy who was nevertheless offered more chemotherapy, which was making the patient quite miserable.

“Why are they doing chemo again?” I asked.

“Because the doctor asked me whether I wanted to continue treatment,” answered my patient. “He said it might help, but that it was my choice.”

Yes, it “might” help. Just like you “might” win the lottery, which is the common justification for buying lottery tickets. But the overwhelming likelihood is that you won’t win the lottery, and that the treatment won’t help. All that will happen is that the last few weeks or months of your life will be significantly more uncomfortable than they had to be. I can’t count the number of new widows and widowers whose grief is made sharper by the thought that, in retrospect, their spouse was tortured to death by the very treatments that were supposed to be “helping” them.

What about the fear that stopping treatment, “giving up”, will shorten the patient’s life? It turns out that hospice patients actually live longer. Not to mention that their quality of life is significantly better than that of patients still undergoing active chemotherapy.

Look at it this way: when a given cancer treatment has a good chance of curing you or of significantly impacting your disease, no responsible oncologist is going to present that option as a “choice“. Sure, lots of people get second opinions. Sure, lots of people ask what will happen if they don’t go through with the proposed treatment. But doctors only offer you choices when it doesn’t actually matter.

So when your oncologist says it’s “up to you” whether or not to undergo more treatment for cancer, say no. Just go out and do whatever you want for the rest of your life, however long or short it may be. Sure, you could be the “one in a million” who responds to the drugs (bearing in mind that oncologic “responses” are often measured in weeks or months, generally not in years; we tend to call those “cures”). But the chances of that are far smaller than you think. Statistically, you’re probably better off with hospice.

Lucy Hornstein is a family physician who blogs at Musings of a Dinosaur, and is the author of Declarations of a Dinosaur: 10 Laws I’ve Learned as a Family Doctor.

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  • Anonymous

    After you get a second opinion! My mother at 74 was told by an oncologist that she had breast cancer but it wasn’t worth it to go through the surgery and the chemo, to go live her live out as reported above. Then he walked out and the nurse whispered to her to get a second opinion. The second oncologist performed the surgery, she went through about 8 treatments and she lived to be 91. Don’t trust one doctor with something as priceless as your life. They are NOT gods, they are clinicians some of whom have over sized egos who will put stats or their own best interests ahead of their patients. Also do a background check on doctors, especially surgeons regarding their success rate. There are a number of review pages out there, simply google “review of doctors” and check a few databases. Do your own research and compare results. Doctors are fallible, they are human after all.

  • Anonymous

    I think anytime you are dealing with a serious illness a second opinion is always best.  Thank you for the great information. 

  • D Jarvis

    It’s too bad that “palliative care” sounds like giving up. We’ve now started using the phrase “supportive care” which may sound more appealing to people. But the question still remains, What exactly does that mean? Here is a link to video that explains palliative care well: http://www.palliativecarevideo.com

    In the video a physician also describes how doctors are trained to “do something” and it’s very hard for them to stop. This affirms what Dr. Hornsteain is saying about asking your doctor to stop.

    FYI: the patient in the video was told that without treatment she would die in three months. She received excellent palliative care and lived for over ten months.

  • http://profiles.google.com/molly.ciliberti Molly Ciliberti

    Thank you for saying that enjoying what life you have might just be the right answer. If I were diagnosed with pancreatic cancer, I would do all of the things that I have wanted to do, love my family and friends and then go to hospice care. The odds are so bad that being miserable on chemo, surgery, radiation and any other “treatment” aren’t worth it. 

  • Michal Haran

    I think it is time to start seeing cancer like any other disease. There is nothing mystical about it. The same rules of risk/benefit, quality of life vs. longevity  apply in cancer as they do in any other disease. The line between palliative and curative is not really clear with the rapidly emerging treatments we now have. We know that many curative treatments don’t really cure but just make the illness invisible for a while. On the other hand many treatments that mostly improve function and quality of life may also prolong it. Some patients with cancer can’t just go and enjoy their life without some form of treatment. Chemotherapy is not the only choice for cancer treatment nowadays. The choice between more aggressive and potentially harmful treatment and more gentle care is true for any disease and depends on many factors, including among others also patient preference. 

  • http://twitter.com/thoughtsthreads Terry Palardy

    Cancer is no longer a terminal illness … many of its forms have now become chronic conditions, as treatments prolong the life of the patient. I wish other chronic conditions received the attention and funding that cancer does.

  • William Dawson

    Thank you for the balanced, loving ideas.

  • http://www.facebook.com/people/Dennis-Lee/100000525496925 Dennis Lee

    Our body enters an acidic environment and cancer spreads!! Process white sugar has zero nutrients. Disease spreads because our cells has nutrient deficiency and loaded with toxins. Our body informs us when it is in dire need for nutrient and detox  in the form of Pain and Discomfort!!!

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