When the Patient Knows Best – NYTimes.com

When the Patient Knows Best – NYTimes.com

Though this article is about a patient facing terminal cancer, there are parallels with many cases of chronic pain: both have no cure, both persist until the end of life, and both have the same treatment goals:

  1. slow down the increasing severity of the disease and/or cause of pain
  2. provide pain relief to maintain as much quality of life as possible

With the increasing reluctance of doctors to prescribe effective opioids, desperate patients are forced to try much more invasive and dangerous treatments offered by Interventional Pain Management”: surgery and spinal injections.

Pain patients often don’t have the strength to resist high-status specialists’ recommendations that they submit to such drastic measures. In addition, some pain clinics will not prescribe opioids until a patient has failed one or more of these “interventions”.

[See Pain Management: Surgery but Not Opiates and Reducing Overtreatment due to Profit Motive]

In late October 2010, Amy Berman, a registered nurse…, received a diagnosis of Stage 4 inflammatory breast cancer. This Stage 4 cancer is always metastatic, meaning it has spread to other parts of the body

There is zero probability of a cure, though five-year survival rates vary for individuals.

Knowing this hard diagnosis, Amy was clear from the beginning that she wanted a “good quality of life for as long as possible,” and she found an oncologist who supported that choice.

Everybody understands what “quality of life” means to a cancer patient, but this central issue is rarely discussed in the pain medication debate.

She found… …a known expert on her specific type of breast cancer…, but pretty quickly, Amy knew she did not want this doctor directing her care. He asked her nothing about what she wanted from treatment. He recommended chemotherapy, mastectomy, more chemotherapy and radiation — a regimen that he uses for “all my patients.”

In some situations, “standards” are exactly what patients don’t want or need.  To be effective in such multi-faceted and complicated cases, medicine must become personalized or it becomes destructive.

Amy did not want to be one of “all my patients.” She wanted to be herself, and her strong feeling was that such aggressive care would not allow her remaining time on earth to be well spent. As is typical, patients don’t always grasp the trade-offs inherent in health care choices.

Our own understanding of risk-benefit may be faulty or clouded by emotion. We all want to believe the most up-to-date treatment is always the right course of clinical action; that’s the meaning, after all, of “modern medicine.” And health care providers often laud the benefits of treatment without fully discussing the risks.

In oncology, my field, any serious diagnosis almost inevitably leads to the recommendation to treat, treat, treat. As clinicians, this satisfies our need to help, to do something about this hard disease. The financial incentives in modern medicine also encourage aggressive treatment. And then there’s the fact that no one wants to die.

All those forces keep doctors much quieter on the subject of risks than benefits.

Such difficulty in seeing one’s options clearly aren’t limited to oncology and end-of-life care: they face us from birth.

But I also learned how easy it is to let an uninformed, gut reaction drive decision making as a patient.

disease under control but doesn’t aggressively try to beat it, and a drug called Zometa to help her bones stay strong. For her, the known risks of full-bore cancer treatment were not worth the — in her view — dubious-at-best benefits.

That’s why we need our caregivers to talk to us, giving each patient the opportunity to understand the treatment trade-offs

Patients suffering from chronic pain are powerfully motivated to discover the cause and “fix it”, chasing a diagnosis, going from one specialist to the next, submitting to countless tests and procedures that can even make the pain worse.

Patients must ask questions and do their own research to fully understand the risk and make their own decision whether the potential benefits are worth it. Doctors are prone to underestimating the risks, but patients are the ones that will have to live with the “complications”.

I finally had to say “no” to further imaging, tests, and procedures on my lower back where much of my pain is coming from.  By now, I’m 99% sure it’s caused by loose ligaments and the only possible treatment is fusing the sacrum to the pelvis and/or lumbar spine.

But the potential for dramatic pain relief is dwarfed by the risks of such an invasive surgery, not to mention a good chance that the problem would just move to adjacent joints.



1 thought on “When the Patient Knows Best – NYTimes.com

  1. Pingback: When the Patient Knows Best – NYTimes.com | All Things Chronic

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