Posted by: notdeaddinosaur | November 6, 2011

Why You should Always Say “No” to your Oncologist

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.

 

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Responses

  1. Thank you for this.
    We simply have to create a program to help people to leave life when there are no further realistic possibilities.
    Hanging on in a lost cause simply magnifies human misery. There is not going to be any alternative to Death any time soon.
    You well know what the parameters for an acceptable “cure” is in many cases as it is only a certain period of life extension around 5 years depending on the case.
    There was not going to be any real cure and urging everyone to fight to the last possible breath is really a form of “baiting” reflecting everyone’s irrational fear of Death.

  2. So well said. Thank you for this post.

  3. I think there is a problem between what doctors indicate publicly and the true value of treatments for cancer. There is a lot of hype abt how wonderful modern cancer drugs are- and sure, they’re a lot better than 50 years ago- but the general public, with nil medical knowledge or judgment believe cancer is like a bad case of pneumonia or similar- that it could kill you, but there are lots of treatments which will probably save you. When offered the last course of chemo by their oncologists most pts genuinely believe they are being offered a viable treatment option- not a guilt salve for the doc.”If it’s a medicine for this disease= it will fix me.” The only patients I know who don’t smile deliriously after being “clear” of cancer for one year are doctors- they’re generally nervous for another 5 years and many rightly so- the bastard disease comes back. There is much muttering at funerals along the lines of “Dr Smith said he’d be fine if we let him have more chemo and look what happened!” Ordinary people have been convinced that cancer can be absolutely cured these days & no one is brave enough to tell them it hasn’t.

  4. My father was on hospice for 15 months with pancreatic cancer. It absolutely prolonged his life – well that and the World Series. I urge everyone to open their mind to hospice sooner rather than later. I think the tide is slowly changing towards public acceptance of palliative/hospice care but people still don’t understand that the quality of life will be BETTER with hospice.

  5. Wonderful post! I have read many similar discussions as I was deciding to stop treatment for my advance metastatic prostate cancer. This is the best. My wife and I are looking into hospice now even though I probably have a year or more left, as I am significantly compromised by pain. I have been writing about death and what goes on in my mind since I was told I had 12-18 months back in April. If you’re interested, please check me out at dyingdigitally.com. I have a good following of professionals working in hospice and palliative care.
    Thank you for your very supportive and meaningful comments.
    Doug (Twitter – @douggosling)

  6. Wonderful post! I have read many similar discussions as I was deciding to stop treatment for my advance metastatic prostate cancer. This is the best. My wife and I are looking into hospice now even though I probably have a year or more left, as I am significantly compromised by pain. I have been writing about death and what goes on in my mind since I was told I had 12-18 months back in April. If you’re interested, please check me out at dyingdigitally.com. I have a good following of professionals who work in hospice and palliative care. I will post a link to your site.
    Thank you for your very supportive and meaningful comments.
    Doug (Twitter – @douggosling)

  7. Great post. I’d like to comment from personal experience on the issue of requirement to stop any treatment to get hospice care.

    My mother had a type of ung cancer caused by EML4-ALK mutation for which there is just recently approved oral drug – crizotinib. My mother was in clinical trials for this drug: she had zero side effects (yes, I know some side effects are listed, my mother didn’t notice any) and it caused some shrinkage initially then kept everything stable for 6 months (from either blood clot or infection – nobody knows, a local doctor where the ambulance took her thought it was pneumonia, my mom’s doctor from the cancer center who called later had thought it could have been a blood clot, her lungs had been in bad conditions before she started the clinical trial and as she was on prednisone from the time she had her last chemo which didn’t help her immune system but helped her breathe better). If only her lungs hadn’t been in such a bad state already, her quality of life on this drug would be very good, far better than if one just allowed the cancer to spread.

    A few weeks before her death she was in the hospital for this infection. They wanted to send her home with IV antibiotic but … medicare wouldn’t pay for IV antibiotics in home settings, only in more expensive hospital settings. So they thought of transferring her to a hospice for the time she needed the antibiotic and then see but a) most hospices wouldn’t take patients with a pleurex catheter to remove pleural fluid – only a couple would agree to the catheter b) she’d have to stop the clinical trial drug. But without the clinical trial drug that was keeping her cancer stable, her cancer symptoms could’ve gotten a lot worse.

    Now, it’s not difficult to drain the pleural fluid with these catheters. I am not a medical professional, I am even less coordinated than average, I learned how to do it for my mother, surely nurses could do it too. Draining the fluid helps a lot with quality of life – it allows one to breath better…. Why can’t the hospices do it?

    Forget my mother, why do people with lung cancer who have pleurx catheters would have it difficult to find a hospice? I also read many hospices wouldn’t allow placing a catheter. But these catheters are not curative, they simply allow to drain fluid easier which helps people breathe better, so what is the problem?

    Now, the clinical trial drug is not palliative but a) one doesn’t pay for clinical trial drug b) it helps to move the research forward, so you can argue it helps the society c) if it holds something like lung cancer from spreading even for some time (during which a person may well die less painfully from something else) why don’t hospices consider allowing people to take part in clinical trials?

    Also, in some cases when the cancer itself is killing slowly in a worse way than a treatment that may at least postpone the worst of the cancer symptoms giving someone who is elderly time to die of something else, why should the person be required to give it up before going to a hospice?

  8. Thank you for saying, with your usual eloquent and concise way what I have thought for a long time.

  9. It is sometimes also worth considering saying no to your nephrologist. Dialysis is a wonderful thing. Some folks thrive on it, gaining time to work, raise families, settle affairs, meet other personal goals. Some folks are purely miserable, with multiple co-morbid conditions, and continue only because the doctor won’t tell them this intensive care is futile or because family insists on doing “everything.”

  10. Hospice = palliative care for dying patients
    Palliative care = focus is on relieving symptoms and quality of life vs. “cure”; may be appropriate for many patients with chronic illnesses (heart failure, cancer, etc.) relatively early in the disease process (e.g. patients who are not necessarily dying)

    Just to clarify. Great post, and I agree with the sentiments expressed.

  11. A wise and unflinching view of terminal care.

  12. Dino:
    I am an oncologist.
    I don’t always agree with my colleagues and I myself am blunt to patients as far as the likely benefit of 2nd-5th line chemotherapy in metastatic lung cancer. That stated all metastatic cancers are not alike (as I hope you know). In the era of FOLFOX and cetuximab patients live with metastatic colon on average of almost two years. This is usually good quality life. For metastatic breast cancer it is even longer with the multitude of agents. Again, usually good quality of life until the cancer becomes resistant to active therapy and hormonal agents. That stated we don’t live on the old soviet union or present day europe and patients in the USA are expected to be active participants in their care. If after an informed discussion with a patient wishes to proceed with a therapy with likely modest beneifit, I typically proceed. THere is often a goal involved in those decisions (ie. making a high school graduation or being present for young children as long as possible) The bigger issue is why medicare has this rule that no chemo can be given on hospice. The reason is money. The newer oral agents especially have relatively lower side effects and are well tolerated in patients with lower performance status. It is also not just about “quantity of life” it is also quality. If I give an agent that shrinks the tumor and improves symptoms is this not a good thing? I also take exception with your blanket statement “cancer patients live longer on hospice”. You are referring to a 2010 NEJM study which involves metastatic lung cancer patients only and involved a one institutional experience from Mass Gen with an intensive impatient palliative care service. Can this result be extrapolated to a rural community environment? Can it be extrapolated to other cancers that are more or responseive to therapy that lung cancer? Those studies are pending, stay tuned. I suggest you read the article. I personally think there is a role for “palliative chemo” on hospice. Which is why I essentially run my own palliative care service without hospice. What I do wish is that primary docs would join me more often in managing these patients. Much more often than not the primary doctor “disappears” and I am left managing the patient even to the point of being hospice MD. It is truly sad as you have usually had the much longer relationship with the patient and family than I have.

  13. Lastly to clarify AJ’s statement:
    Hospice was not meant for “dying” patients. As envisioned by Kubler-Ross it was meant to give quality to patients with a terminal illness. This may sound like semantics, but way to often I have seen patients placed on hospice days or even hours before death. Way to late to be of benefit. In this country, doctors place patients on hospice way to late. Partially because of hospice rules as far a “palliative” treatments. Partially, because of our doctor’s and society’s inability to accept death as a part of life.


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