Why the CDC Needs to Recognize Palliative Care

Why the CDC Needs to Recognize Palliative Care — Pain News Network – March 28, 2017 – By Barbara Nelson, PhD, Guest Columnist

A little over a year ago, the Centers for Disease Control and Prevention released its “Guideline for Prescribing Opioids for Chronic Pain.” Its goal is to help reduce the raging and heartbreaking overdose epidemic in the U.S.

Unexpectedly, the guideline has exposed the extraordinary need for palliative care for millions of patients who may live for decades with intractable pain.

These patients now face enormous obstacles getting medically-needed opioids for effective pain control, especially when the dose exceeds the highest recommendation made in the guideline of 90 morphine milligram equivalents (MME) per day. 

This unbending recommendation is too low to provide pain control that will keep many intractable pain patients out of agony.  In the last year, untold numbers of chronic pain patients requiring palliative care lost the correct opioid dose for their diseases — making work, self-care, and family interactions harder or impossible.

I have seen this suffering, both personally and professionally.  I have an incurable and progressive neurological pain disease that, before diagnosis and some pain control, left me unable to read. My disorder profoundly changed my life as I previously knew it.

This reinforces my view that only people who have experienced such pain themselves have the slightest idea of what’s at stake for us.

We simply need the folks making the restrictive rules to experience this pain so they can understand the “other side” of their anti-opioid stance and stop ignoring it.

My personal rule is to never wish suffering on others, but in this case I see no other way to teach. If someone refuses to understand the difference between “warm” and “burning hot” and when all efforts to teach or arouse empathy fail, I see no recourse but to give them a sampling of “hot” by holding their hand to the flame.

The dosage recommendations in the CDC guideline show no compassion for those with intractable pain, who will probably need higher opioid doses for the rest of their lives.

Only later, when faced with terminal illness and imminent death, will official support for adequate pain control be acknowledged.

 

How Did We Get Here?

The objective of the guideline was to reduce opioid addiction and overdoses by limiting the dose and duration of prescriptions written by primary care doctors.

The guideline begins with support for “appropriate and compassionate” pain control for those with chronic pain.  

This is a part that is ignored by almost everyone, including the medical societies and legislators who are codifying the guidelines as unyielding rules or even laws.

It pays special attention to the chronic pain care needed by those

  1. fighting cancer,
  2. needing palliative care, or
  3. facing terminal illness.

These three categories of pain are excluded from the CDC’s suggested highest daily opioid dosages because of their well-researched requirements for higher than average pain control,

There is a problem to this approach, however.

The differences between these three categories are unclear to many doctors and patients.

Most frequently, palliative care is confused with end-of-life or hospice care for cancer.  But palliative care is different from end-of-life care, because in palliative care there is no assumption of imminent death, nor is there a decision to withhold medication that might curtail the disease itself.

The CDC guideline defines palliative care as

“care that provides

  • relief from pain and other symptoms,
  • supports quality of life, and
  • is focused on patients with serious advanced illness.

Palliative care can begin early in the course of any serious illness that requires excellent management of pain or other distressing symptoms.”

Not all diseases requiring palliative care also require opioids.  But those patients who require both palliative care and opioids are virtually invisible in the guideline.  

Invisible patients get neither appropriate nor compassionate pain care.

The Need for a Palliative Care Appendix

The CDC should produce an appendix for all prescribers – not just primary care doctors – that would help them provide fully adequate pain relief to palliative care patients with life-long pain rather than near-death pain.  

Here is the critical distinction:

life-long pain versus near-death pain 

The appendix could start by examining the legislative or regulatory language used in the 13 states that define intractable pain and that allow higher than typical opioid dosing.

\The appendix also neds to emphasize research on the most painful long term diseases, which will offer physicians a wider variety and more specialized array of treatment options than is available from a focus on generalized chronic pain.

The appendix could begin with the recognition that intractable pain patients needing palliative care do not get “high” or “euphoric.”

It is extremely difficult to justify our need for pain relief because, in our culture, it is immoral to achieve enjoyment from anything other than a moral behavior – we should have to “work” for legitimate pleasure.

This is what stigmatizes drug use, even to relieve pain, as an immoral act. It means we must always stress that we don’t get pleasure from pain-relieving drugs as though this were a real issue with pain control.

Our society believes that we don’t deserve any pleasure just from taking a pill. The corollary belief that pain is a punishment by God makes it immoral to achieve pain relief with just by taking a drug.

Without this old puritan American/Calvinist belief system, the opioid issue could be much more reasonably debated, but we’re doomed by our cultural fascination with “deserved suffering”.

Opioids are medicines that reduce pain and let [us] live closer to normal lives.

Yes, there may be some patients who attempt to scam the palliative care approach. However, I doubt that this kind of long-term pain is easily faked.

The CDC guideline itself asks physicians to make dozens of new medical judgments. Acknowledging intractable chronic pain patients who require palliative care is just one more.

If the CDC does not add a palliative care appendix to the guideline, perhaps the American Academy of Pain Medicine, the American Medical Association or the American Academy of Hospice and Palliative Medicine could convene a group of all stakeholders to thoughtfully discuss the issues of pain treatment within palliative care

Groups outside the CDC could also expand the mandate beyond training primary care physicians about opioid dosages, ton include pain treatment for diseases requiring palliative care.

The conflict over opioid guidelines that are treated as laws or regulations, instead of recommendations, is not going away.  Several states, insurers and federal agencies have adopted versions of the CDC guideline, and others are sure to follow.  

Without an appendix to the CDC guideline or some other booklet that promotes correct palliative pain care, how will outstanding doctors be protected from unwarranted intrusions by insurance companies and drug enforcement organizations?  How will patients who deal correctly with pain that most people can’t imagine receive the palliative care that they deserve? They won’t.

Author: Barbara J. Nelson, PhD, is Dean Emerita of the UCLA Luskin School of Public Affairs and is Professor Emerita of UCLA’s Public Policy Department. She is the founder of The Concord Project, which builds social capital that allows people from divided communities to work together on projects of mutual benefit.
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