According to a new study in The Journal of Clinical Oncology,

a recent survey of over 3000 cancer patients found that one-third felt that they needed more painkillers to fully treat their symptoms. One month later, when these patients were interviewed again, the percentage experiencing uncontrolled pain remained the same. As the article concluded, “Their pain, in other words, had not been treated.”

Disturbing news, considering that a groundbreaking study in the late 1990’s with similar findings led to  what this article referred to as “a firestorm of new initiatives” aimed at mandating better pain control. Now, more than 2 decades later, not much has changed.

Although this article touches on some of the complexities of good pain control, it looks at the issue from the doctor’s point of view and offers no solutions.

I’d like to offer some suggestions from the patient’s/caregiver’s perspective: what you can do right now to get the pain control you need.

Understand very clearly that all patients have the right to adequate pain control.

 Know that most oncologists are NOT very skilled in pain control. Their training in pain control is generally minimal and their bag of tricks is  limited.

 Almost every hospital has a palliative care team and one or more pain control specialists. If your pain is not well-controlled, insist on a referral to the pain control team or palliative care team immediately. This is your right!

Myth-debunking fact: you do not have to have a terminal diagnosis in order to receive palliative care. Dealing skillfully with uncontrolled pain  is a major aspect of palliative care, but palliative care is absolutely NOT limited to the end of life.

Our experience was that almost all of the doctors we encountered  during John’s hospitalization drastically over-estimated their own capacity to deliver effective pain control. As a result, not a single one of them ever offered a referral to the resident pain control specialist. When we finally demanded palliative care, the head of that department took one look at John’s pain control regimen and pronounced it “ridiculous”. Shortly after she took over John’s case, he was resting comfortably for the first time.

Bottom line: you can’t get what you need if you don’t know that it is available– and you don’t ask for it. When it comes to getting the pain control you need, he who hesitates will likely suffer needlessly.


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.
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  1. Hugo says:

    If I only knew back then what I know now 😦 .
    I didn’t know, how would I ? Yet, few years later after the death of my young wife, I am still angry at myself that I didn’t do more to help her. There was, so much unnecessary pain for her, for me , for our daughter. The memories of those days still haunt me.
    I even had an argument with her, that she cannot possible be in so much pain, because the doctors say she shouldn’t be !!!!??? WTF ??
    Yes, it is very important to spread the word about palliative care . Those were the people that finally helped my wife to die peacefully .
    Bye my love and I am so so so sorry .

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