HOW DO YOU KNOW WHEN IT’S TIME TO STOP CHEMO?

One of the most agonizing decisions that a cancer patient faces involves the decision of whether or not to continue chemotherapy. In the first stages of treatment, ignorance is bliss; there has been no personal experience of the suffering caused by the chemotherapy drugs themselves, and the patient hopes for the best, that their side effects will be mild and tolerable. But as the treatments continue and the side effects escalate, the reality of the likelihood of increased future suffering begins to dawn.

I posed the question in an earlier post: How does the oncologist know when it’s time to stop chemo? My answer: when the patient screams,

“I can’t take this any more!”

Looking back, I can see that this could be viewed as a very facetious and shallow remark. In actuality, it is sadly on the mark, at least from our own experience.

At the point when my husband began to question whether he was willing to continue to suffer at his current level, or to face potentially greater suffering, he attempted to have a frank conversation with his oncologist about this. The oncologist’s response was,

“Don’t worry. I’ll tell you when the risk/reward ratio gets out of whack.”

Those were his exact words. On the surface, such words might be reassuring to a trusting patient. But, lurking between the lines of this statement is the implication that the oncologist understands his patient’s definition of quality of life. For that to be the case, the oncologist would need to really know his patient as a unique individual.

Given John’s particular relationship with his oncologist, this statement was completely ludicrous. John’s  biggest identity was as a surfer and a man of the ocean. He was very clear about this with all of his doctors, even to the point of bringing in a photo of himself on a 25 foot wave to make his point. Yet his oncologist’s single reference to this elemental aspect of his patient was “What do you call that thing that you do in the ocean?” An oncologist in Hawaii with a number of patients who are surfers who is unfamiliar with the word for surfing?? How much could that oncologist possibly know about my husband John’s bottom line on quality of life?

This oncologist’s assumption that he  was capable of knowing when the chemo side effects had reached the point of unbearability was ludicrous from another point of view: it implied that he was aware of the his patient’s current side effects and was able to put them in perspective comparison with the side effects of other patients on the same chemo regimen. This is in the category of what the patient would really like to believe, but again, in John’s case, the reality was sadly different.

His oncologist perpetually seemed rather surprised by the symptoms John described, as though he had never heard of them before. I now know from reading many  patients’ stories  that many of John’s symptoms are quite common among other colon cancer patients receiving chemo– yet they were received by our oncologist as completely new bits of information (which, I might add, he seemed deem unworthy of even being entered into his notes).

If the oncologist is unaware of what his patient values in terms of quality of life, and if that oncologist is also paying very little attention to the side effects his patient is experiencing, then what is the likelihood that this oncologist can reasonably judge when the risk-reward ratio is “out of whack”?

The inescapable conclusion here is that this is a matter for the patient to decide; this is an intensely personal issue, the answer to which will be quite different for each patient. The excruciating part is that this is a decision that no patient feels really qualified to make. We want to give this decision over to someone we would like to view as more qualified– that person, by default, is our doctor. He’s the expert, or so we would like to believe. But the truth is that the oncologist may be an expert on chemo, but he is most definitely not an expert on his patient’s life.

Further confusing this decision is the general murkiness surrounding the efficacy of chemotherapy. In John’s case, we knew that the possibility of a cure was infinitesimal, if not impossible. So the hope was that it would prolong his life. This is the gigantic carrot that is mesmerizingly dangled before the cancer patient.  But at what price is one’s life prolonged?

Want to know more about what we learned about the decision parameters on when to stop chemo and why your oncologist is not necessarily the best person to make that call? All that my husband and I learned on this cancer journey– through hard experience– is now available in a much more accessible and easily searchable E-book format that can be read from a PC, Mac, Ipad, Ipod Touch, Blackberry or whatever– available on Amazon: http://www.amazon.com/dp/B004T3331M

The book is titled Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze. All proceeds from the sale of this book will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world.

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About surfingon

I live in Hawaii. I surf in the winter and swim in the summer. I have been a hospice volunteer with a contemplative-care oriented hospice for 25 years have been part of their team that trains new volunteers for the last 9 years. I have walked the colon cancer path with my beloved husband these past 5 years. He died very peacefully in April 2009. I now seek to share what we learned, to shed light on the many dark corners of this often mystifying, heartbreaking and heart-opening journey.
This entry was posted in doctor patient relationship, side effects of cancer treatments and tagged , , . Bookmark the permalink.

3 Responses to HOW DO YOU KNOW WHEN IT’S TIME TO STOP CHEMO?

  1. I don’t usually reply to posts but I will in this case, great info…I will bookmark your site. Keep up the good work!

  2. Beth says:

    Enjoyed your post as I recently started one about my cancer journey. Lifeisthejourneyblog.com
    I am now at the point your article addresses and will just say this. That decision in neither one’s responsibility. It should be a “joint” decision made by both the doctor and the patient based on a very open/honest relationship that they have. If there is a caregiver that person could have some input as well but they might know the patient’s wishes but do not know the actual level of physical suffering being experienced but do see the impact of such and it’s effect on quality of life. This topic should not come up at the last moment but rather be another conversation to either confirm or revise a decision from very early on goals discussed with the patient/doctor. I am a 62 year old Metastatic Breast Cancer (incurable) 11years 9months out from diagnosis.

    • surfingon says:

      Dear Beth,
      Although I absolutely agree that the decision regarding when to stop chemo should ideally be reached via frank and honest conversations on an ongoing basis between doctor and patient, our experience was not that at all– which is why I made the decision to write about it. The doctor-patient relationship is sometimes less than open and frank. Sometimes the patient (as in my husband’s case) is constrained in their choice of doctor because they belong to a HMO health plan which limits choice.

      Sometimes the patient assumes that their doctor is on the same page with them when, in fact, the doctor’s unstated preferences (which even he/she may not be consciously aware of) for aggressive treatment until the very end may be wildly at variance with the patient’s preferences. In my husband’s case, his oncologist really believed that he had a good handle on the risk/reward aspect and insisted that he would inform John when that ratio was “out of whack”– but the terrible reality was that from John’s point of view, he had already passed the point of any possible reward from chemo long ago, had closed the door on that option and made the decision to rely on RFA going forward. He stated this quite clearly to his oncologist, but it was clear that his well-reasoned and clearly presented decision fell on deaf ears when it came to this particular oncologist. I sincerely hope that others will benefit from our experience, which is why I wrote about it.

      Amen to your point that the caregiver is often not capable of really understanding the depth of the patient’s suffering and therefore should have limited input in the final decision to stop chemo. I was very clear that this was John’s decision, 100%. I felt that I, even as his wife of 40+ years, had no right to influence his decision in any way.

      My hear goes out to you at this crossroads in your journey.

      Rachel

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