Wednesday, September 5, 2007

When is cancer pain not cancer pain?

This question is generated by two recent articles, the new Washington State opioid-prescribing guidelines, and a statement attributed to Kathy Foley in her presentation at the NIH conference on pain and addictions in March: “Distinctions that we make about cancer pain and noncancer pain are rather arbitrary. Opiate receptors don’t know if a patient has cancer or doesn’t have cancer.” (Seen in a hard copy-only publication called PainReporter underwritten by Alpharma)

1)
It has been common in the past to distinguish cancer (or “malignant”) pain from “benign” (as if there were such a thing) chronic pain. That paradigm, always suspect, is now becoming obsolete as a growing number of people survive cancer but with a significant burden of pain. Burton et al provide an excellent overview of the problem of pain in cancer survivors, pointing out both prevention and treatment strategies, including borrowing from the noncancer pain experience.

2)
Jane Ballantyne has a thoughtful article (which is therefore sure to generate controversy) on the need to re-think treatment of chronic cancer-related pain, now that cancer is becoming a chronic condition with the potential for long-term survival for an increasing number of patients. She reviews the history of cancer pain treatment with opioids, recalling the difficulty pain management advocates had 20+ years ago trying to convince clinicians and patients alike that use of opioids is an important and low-risk intervention for severe pain. (The sometimes non-so-subtle message sometimes became “they’re going to die anyway, so why worry about addiction?”) Well, maybe now we do need to worry, says Ballantyne, who advocates using the same risk-reduction practices with cancer survivors as are suggested for people with chronic noncancer pain. Strikes me as very reasonable. I take issue with a point she makes a couple of times: that chronic exposure to opioids produces “inevitable” changes in the brain which have been associated with addictive behaviors. She is undoubtedly better versed in that science than I am, but I don’t see the same inevitability that she does. Certainly the changes in the brain, if universal, are insufficient to “cause” addiction, which is manifested by a collection of behaviors which are relatively rare.

Ballantyne and other responsible commentators point out that no one knows the incidence of addiction among people with chronic pain of any etiology (because no one has done that study and published estimates are often based on pain clinic populations, hardly a representative sample of the universe of people with persistent pain), that the risk is low for an individual without multiple risk factors, and that simple exposure to an opioid does not “cause” addiction.

I should point out that Ballantyne distiguishes between a palliative care model for patients with progressive and especially end-stage disease, and those with pain but a prolonged prognosis. She expresses concern that a shifting pradigm for cancer pain management has the potential to victimize patients with end-stage disease who may need aggressive pain treatment with opioids.

By the way, this entire issue of Current Pain & Headache Reports is devoted to cancer pain.

3)
The Washington State Guidelines have generated controversy for suggesting a ceiling of 120 mg of morphine per day for people with chronic noncancer-related pain. A referral to a pain specialist (undefined definition, but only 11 listed for the entire state) is recommended for patients needing more than 120 mg/day. Long-term cancer survivors (undefined) with chronic pain would be included under the treatment guidelines. The American Pain Society has cited concern about the care of patients with cancer-related pain under these guidelines.

4)
A related topic (sort of—some people will relate them too closely) is the treatment of pain in end-stage disease in patients who have addictive illness. At this year’s AAHPM Ron Crossno gave a presentation about this. Among other things, he said something like: “If you haven’t seen any patients who are abusing some substance, it’s because you’re not paying attention.” Steve Passik and colleagues have a couple of articles (here and here) and Passik & Russ Portenoy have a book chapter on this topic (2nd edition of Principles and Practice of Palliative Care and Supportive Oncology; I don't think it carried over to the 3rd ed.).

11 comments:

Siobhan said...

Friends,
The distinction between cancer and non/cancer pain is indeed dated. It was always irrational and based on public relations concerns rather than on medicine.

However, because any distinction at all is used by most doctors to escape prescribing opioids for pain, this falsehood, like many others will remain a reality in the minds of the vast majority of the medical community.
At Pain Relief Network, we are working toward the day when pain is treated as a medical problem like any other. Now, because of the onerous Controlled Substances Act and the government's press strategy which is designed to intimidate physicians, patients in pain continue to be denied vital, life-saving care, in droves. If these people were dying because they were, for instance, being denied insulin for political reasons, the outcry would be deafening.
While we appreciate palliate medicine's efforts to normalize the treatment of pain amongst physicians, these efforts will continue to run into a brick wall of inflated addiction concerns, etc. as long as the political situation remains un-addressed.
Perhaps because physician's political inaction has persisted for nearly a hundred years, it no longer strikes palliative physicians that they indeed have ethical obligations to stand up for the dignified and rational treatment of their patients just as other doctors do for theirs.

Unfortunately, we see a lot of discussion about the medicine per se but little support for the grassroots efforts to effect actual change.

It may simply be that medical people don't understand just how truly dangerous the CSA is to all opioid prescribers, no mattter whether one is doing so in good faith for good medical reasons. The problem however, that doctors understand the dangers on some level and continue to deny treatment to millions of deserving Americans.
I will be glad to discuss the nuts and bolts of the law and how it is used against physicians so that we might raise awareness that these dangers are real and bear addressing.
So please, fire away.
Siobhan Reynolds
President
Pain Relief Network.org

Drew Rosielle MD said...

Cancer vs. non-cancer pain:

Tom you've been around long enough to see a lot of the changes. It seems there is a basic question of is the distinction between cancer & noncancer pain (chronic nonmalignant pain CNMP) clinical or moral?

Clinical:
cancer pain responds to opioids and they're safe whereas cnmp is poorly responsive to opioids

Moral:
it's ok to give these dangerous addicting drugs to cancer patients b/c they're all going to die
cancer pain is 'real' pain whereas cnmp isn't and it's ok to give opioids for 'real' pain

Or sorta both: benefits of opioids (pain relief) outweigh risks (addiction) in cancer patients (b/c they're going to die anyway)whereas they don't in CNMP (b/c those patients aren't going to die and the risk of addiction is so high blah blah blah).

It seems the challenge for all of us is to 1) define the problem and its solution clinically not morally and 2) do the research necessary to answer the questions. We are going to have a hard time convincing screaming hordes (check out other blog posts about the Pounds of Opioids Sold newsarticles that Christian posted about the other week http://www.pallimed.org/2007/08/doctors-prognosticating-painkillers.html) without data. And the research should not be aimed at proving 'opioids are safe' or not but aimed at defining the risks of long term opioid use for analgesia.

What we do know from trials:
1) Opioids are safe and effective for cancer pain in relatively short duration trials (weeks to months).
2) Opioids are of mixed efficacy for a variety of CNMP syndromes - lots of conflicting data - probably a substantial minority of patients find them efficacious and worth the side effects long term.
3) Opioids are safe (iatrogenic addiction seems nearly absent from the relatively short duration CNMP trials) in short term CNMP. See this recent letter in annals about this.
4) Substance abuse and addiction are common in the US and particularly common in patients with chronic pain who use opioids and/or are seen in pain clinics
5) There is an epidemic of use of prescription opioids recreationally, with an associated rise in deaths from them.

What we don't know (at least based on quality clinical trials):
1) how commonly addiction is iatrogenically 'created' by the use/prescription of opioids for people in pain who (at least initially) start using the opioids for analgesia
2) how common 1) is in both long term cancer patients/survivors as well as people with CNMP
3) how much harm (worsening of psychological dependence/addictive behaviors etc) is done to patients with histories of substance abuse by the prescription of opioids for pain.

For me 1) above is the real question. The fact there are patients who seek opioids for non-analgesic purposes (recreational use, frank addiction, diversion) and misuse the system (including the more liberal attitudes about opioids for cnmp in the last 10-some years) is a real problem for which docs/prescribers/ clinics/pharmacies/health systems/communities need better solutions for; this however doesn't speak to the clinical question facing docs which is how much harm (if any)- perhaps it's better phrased as how much risk - am i subjecting my patient to by using these drugs long term for pain?

Until we have the answers to that the screaming will continue.

Siobhan I agree that the current regulatory climate is not helping patients at all, especially that minority of cnmp patients who do find opioids helpful, and the climate won't get better until a lot of things happen including docs no longer getting thrown in jail for earnestly prescribing opioids for analgesia....

Thomas Quinn, APRN, CHPN said...

I hope our readers don't think that we are going to solve this problem on Pallimed nor come up with definitive responses to the questions that Drew raised. This is a highly complex (and obviously contentious) social as well as medical and legal issue.

Many prescribers are intimidated by the highly sensationalized cases we've all heard about. Siobhan and her organization focuses on those.

But there are also plenty of uncertainties from the medical side as well. Some of them are of the "received wisdom" variety, i.e., handed down from attending to resident as truth but without evidence. One of them is just as Drew said: a belief that cancer pain is somehow different from noncancer pain and that cancer pain responds to opioids while noncancer pain does not. In fact, nociceptive pain responds to most opioids in most people. Some neuropathic pain responds to opioids (see my post on levorphanol a couple of weeks ago http://www.pallimed.org/2007/08/levorphanol-another-back-to-future.html), but usually not as well as nociceptive pain. Chronic pain is life-changing and requires multimodality approaches. The majority of chronic pain will not be "cured" by any approach, and certainly not by single agent opioids. Polypharmacy, PT, cognitive-behavioral interventions, and a host of other things may need to be tried. The goal is to provide as much pain relief as possible in the context of improving physical and psycho-social-spiritual functioning. Many (most?) clinicians are not equipped to manage complex pain, even if they are willing to prescribe opioids. Partnering and referral networks are essential, but these also take time and a lot of work.

There appears to be a subset of patients who do well over a long period of time on opioid therapy--but they may be a minority of those who embark on it. "Long period" means several months to years. "Do well" means their pain is controlled enough for them to be functional--work, engage in family and social roles, etc., their analgesic doses are stable, and the side effect are acceptable. These folks have never been studied, so we don't know how to differentiate these "responders" from "nonresponders." A time-limited opioid trial (as opposed to a sort of open-ended unplanned treatment) is one approach to this dilemma.

We know that there is also a subset of patients who will abuse opioids (and other medications prescribed for chronic pain). Whether there is really an entity called "iatrogenic addiction" is unclear to me. Addictive illness is also very complex and exposure to opioids is only one of the necessary conditions. There are several screening tools available to help determine risk. These tools obviously should not be used to deny opioid therapy that is otherwise medically appropriate.

Since we as a society don't take either chronic pain or addiction seriously as illnesses, we sure aren't going to take the two of them together very seriously. Throw in the psychiatric comorbidity that is common in both illnesses, and you have a triple-whammy tragedy and personal catastrophe.

I'm obviously all over the board here. There are no simple answers. We're all more ignorant than knowledgeable, but some of us are working hard to change that equation.

UroCanswer said...

great topic.. I hope you don't mind me linking to it on my blog.

I have to admit that once my patients get to this level of significant pain, I usually am not involved as much as my med-onc or hospice colleagues.

I found the discussion of "cancer" vs. "non-cancer" pain interesting, especially in regards to iatrogenic addiction. I believe there is a pervasive "cancer bias", and I suspect that we turn a blind eye to this iatrogenic addiction, and consider it "ok" if it is a cancer patient. It's seen as more acceptable to be liberal with giving out narcotics to a cancer patient. I have to admit, I probably have this bias. I noticed it recently when I got 2 calls from patients over a weekend. 1 was a not-so-recent stone patient requesting a refill on vicodin. Not my patient, and I politely declined, advising him to call his urologist on Monday, or go to the ER if his pain was not relieved with OTCs. I also got a similar call from a patient I knew of with locally advanced, likely metastatic renal cell carcinoma. I did take care of his request. So, I suppose I'm guilty, but with the best of intentions (& we all know where that path leads..)

==
UroCanswer
http://www.UroCanswer.com

Thomas Quinn, APRN, CHPN said...

Thanks for the comment and the link, UroCAnswer. I obviously can't comment definitively on those specific patients, but I'm glad you're reflecting on your own practice. Hypothetical: If a patient you don't know calls and asks for an antibiotic, will you prescribe it? (Your probable answer: I'd be reluctant, but it all depends) Anyone on call is in a tough position on decision-making.

The bigger problem is the global assumptions and the value judgments that we make about classes of patients (some of whom you mentioned), rather than caring for the individual in front of us.

We also forget that acute pain and chronic pain should be approached differently, and that people with chronic pain can have an acute exacerbation or acute overlay. In people with cancer, an increase in pain can be an indication of disease progression, of course.

Opioids, when appropriate for a particular patient, are prescribed as part of a treatment plan. Goal-setting, monitoring progress, and adjusting the treatment plan as necessary is the same model as for diabetes or hypertension. The law and the potential risks with opioids add some additional complexity.

The bottom line is that pain should be treated as the complex disease that it is, and the person with pain should be treated and respected as an individual.

Siobhan said...

It doesn't look like anyone is going to take me up on my offer to explain the Controlled Substances Act so I will confine myself to making a couple points of clarification.

In the context of criminalization, goal setting and monitoring progress becomes this bizarre ritual where patients who are rarely given enough opioids to function properly are, because of the law, required to come into the clinic monthly to be grilled about how well they are progressing.
If they don't progress the doctors jump to cutting off the opioids, because they have become "inappropriate." So patients are reduced to pretending that they are doing better when they need to be on a higher dose.
Also, it has to be said out loud that anyone who thinks those who suffer chronic "non-malignant" pain number a small population needs to think again.
Nearly everyone who is hurt in a car accident, or who has orthopedic surgery or suffers any number of genetic maladies, or cancer....the numbers are staggering....these people, if they need meds beyond the acute pain (and they are often undertreated for that) find themselves out in the cold. Their specialist simply stops returning calls. Eventually, if they find out that pain clinics exist before their body falls apart under the constant stress of unrelieved pain, they are made to wait months even sometimes years for an appointment.
People know that the medicine is in the pharmacy but they are helpless to say the right thing to get the doctors to prescribe it. Their lives fall apart, jobs are lost, children taken away. Hideous.
The medical community has created an entire set of ideas that work together to exclude the possibility of treating serious pain with the medicine that is the gold standard for serious pain.
Prior to the Bush crackdown the American Pain Society's Roadblocks to Relief Study said that 10 million Americans were attempting to live in out-of-control pain.
As we do not keep statistic on people who die or commit suicide as a result of untreated pain, the toll is not reckoned with.
This is not a small problem, nor are the doctors immune from having their behavior manipulated against the interests of the patients.
Quite to the contrary. In all my years as the wife of a pain patient and as the head of this organization the single most disturbing aspect of all this is to watch how effortless it is for doctors to morph the imperatives to not treat into protocols, cautiousness, "taking a total patient approach" while the total patient dies slowly before their eyes. But the doctor cannot see it.
Even the "ethics" one reads has eliminated the actual relief of pain from the discussion of the duties owed patients. This is a total, societal breakdown.
Siobhan
Painreliefnetwork.org

Ian MacLeod said...

First, thank you, siobhan. I have been a CPP for 23 years now, and your honest take on the situation is refreshing. To the other doctors who commented here, I hear concern and an honest desire to help, but also fear of the insane DEA (with good reason), and some misinformation.

Here's a suggestion: try putting yourself, as well as you can, in my position: the pain never goes away. To many care-givers, anything you say or do is a request for opiates, so you're obviously an addict. No tests are done, because people don't look for answers they already think they have. So how would you behave when you are given enough pain medication to allow you to rest for the first time since you got hurt, allow you to function much better, and in essence, give you back your life - but you only get enough for a week and are told to make it last three months? What would you do?

I am, right now, between a rock and a hard place. I have a wife in end-stage COPD, and I am the only one there is to care for her - and the house, all chores, and everything else. I've had six back operations (double diskectomy at L3-4 and S1-L5)and a factetectomy, with radiculopathy. I've been under treatment with fentanyl and other medications for some years now. Until my wife's illness cause my pain levels to skyrocket, I was able to take care of things around the house fairly well, and even play music a couple of days a week. Now, I am being forced to see an MD with a masters in pharm. who thinks he's a pain specialist, and he's using that Washington "standard". He's taken all but the fentanyl away, and he says that, at 200 micrograms/h, is a "toxic dose", and it has to go too. He wants me on methadone, which makes me ill. I never had much luck with time-release meds (DSB, they say). My resistance to having my regimen changed is ascribed to my being a drug-seeker and an uncooperative patient. My care of my wife is suffering as I rest less, have more pain, and less treatment. The assumption was that because I was in more pain, the regiment didn't work, so it all has to be changed. This is through the VA, and if I fail to cooperate too much, I lose all treatment, period: medicine by blackmail, with my wife's welfare in the balance. I don't abuse drugs, I don't drink save a shot of good scotch once every few years, maybe, my meds had been stable for years, but to my new doctor, I am a criminal. He doesn't listen, interrupts constantly, disregards all psych tests in my record, plays dominance/humiliation games, and doesn't even notify me of changes in my regimen, much less discuss them. Though I've offered (my old doctor) to do drug screens on request, to bring in pharmacy records, brought in an Excel chart on my medication use at each appointment, this guy orders tox screens without asking or mentioning it, demands printed copies of the Excel chart (that costs money I can't afford), and is trying to force me to take SSRIs (they make me sick and mess with my mind intolerably, like tricyclic antidepressants), neurotonin (that is a horror story of a drug) and other things he already knows have been tried and didn't help or caused harm. Oh, and my home problems aren't his concern; only my pain, or so he says.

Here's an article you might all find useful. And try to remember, pain is pain, wherever it comes from. It can kill directly or indirectly, and doctors are the gatekeepers. The abuse I've suffered, along with uncounted others, is standard, not the exception. Please read:

http://www.dailykos.com/storyonly/2007/6/5/82950/29569

Ian

Ian MacLeod said...

Please pardon the typing - I do know the difference between a regiment and a regimen. I was in one, and don't have much left of the other. I am typing while lying on one side (my usual, and least painful position), and I miss the keys sometimes. I am also up after almost two hours of restless sleep, and am about to go back and try again. I am really not as ignorant as my typing might lead you to believe. I am 51, was a medic in the military, an EMT and a paramedic (neonatology/transport), and have other training in medicine, mostly EMS. I have also kept a lively interest in medical advances and policies as well as the political situation, as both directly affect my life.

Ian

Sarah Perkins said...

"Do well" means their pain is controlled enough for them to be functional--work, engage in family and social roles, etc., their analgesic doses are stable, and the side effect are acceptable."

As a nurse, and the wife of a chronic pain patient, I'd like to suggest that doctors begin using these criteria in deciding how best to prescribe for their clients with chronic pain. And how about asking family members to join in on the discussion? I know very well when my husband is "doing well" - he can work around the house, engage in conversation with me, enjoy social events, sit up long enough to eat a dinner with friends and have a chat afterwards...and my life is infinitely happier when he is adequately medicated. I can focus better on my job, have time to myself to relax, and have a companion to share my life with.

Early on in our struggle with his pain, my husband was overmedicated - this included our famliy physician experimenting with SSRIs and Neurontin in addition to opiods. (Honestly - how on earth can we expect an SSRI to work on pain caused by muscle and bone???) My experience over the years is that my husband overmedicated presents exactly as my husband undermedicated - withdrawn, not eating, not caring for himself, immobile, confused and with a poor memory.

It would be great if doctors began asking the right questions, the "doing well" questions, of their chronic pain clients. These might include asking how often the person gets out into the community, how much time is spent socializing with friends, whether they are spending time on personal pursuits, what they have been doing that has brought satisfaction to them, and if they have the energy to put into family relationships. And then use the answers to help the person to find the right level of medication.

As Ian's experience shows, too often, chronic pain patients and their families are not allowed to be their own advocates. I remember fighting with a pharmacist to get a Vicodin script filled. She simply refused, because she had decided that my husband was an addict. In her face was the clear message that I was a coconspirator in using the system to support his habit. There was nothing I could say that she would have listened to. The powerlessness I felt angers me to this day. Although I am fearful of advocating for my husband and myself, I would love, as a total stranger, to call up Ian's doctor and give him/her a thorough reaming out - without the benefit of pain relief - on Ian's behalf. I would find this a great stress reliever.

This has not been a "doing well" day for us, and I appreciate having the opportunity to vent.

Ian MacLeod said...

Sarah,

Thanks for the empathy and I'm sorry to hear about your husband. I would never have gotten the decent treatment I did without the support of my own wife. There was not enough left of me to fight back anymore, and where she will not fight for herself, she gets downright vicious fighting for me. I would have been dead long since without her.

Doctors are as vulnerable to propaganda as anyone else, and that is one factor, as are the chilling effect the DEA denies, and teh dumbing down of schools that they attend like the rest of us. Plus, many of them think the FDA still protects consumers, even after the Vioxx incident. Chalk that up to the schools again - we are taught to NOT think.

Talking to this guy would do no good, shouting or quoting studies he would refuse to believe. He would judge you as he did me, and as your husbands doctor did you. It is the same circular reasoning as the Inquisitions used, which is why I used the title, The American Inquisition" in a series of articles I have been working on for some time. If you are interested, find them at:
http://www.dailykos.com/storyonly/2007/6/15/11654/3627
and at:
http://www.dailykos.com/storyonly/2007/6/5/82950/29569

The stories will not be unfamiliar to you, or to most on this blog. The WOD has been incorporated into the program to get Americans used to the high-handed, autocratic dictatorship the Bush administration is taking us into, and I only see it getting worse from here on out, though I hope I am wrong.

Again, sorry about your own situation, and thanks for the empathy!

Ian

Drew Rosielle MD said...

Ian & Sarah - thanks for your comments which highlight the nightmarish situation we have now:

1) docs basing treatment decisions/practice on the minority of patients who abuse prescription opioids/the system
2) docs treating all chronic pain patients like they are a member of that minority
3) ignorance about pain assessment, treatment,
4) ignorance about addiction/substance abuse assessment, treatment
5) fear - fear of regulatory scrutiny, fear of being jailed b/c a prosector decides X number of oxycodone is 'too many' and prosecutes you as a drug trafficker even though no one actually thinks you are prescribing without analgesic intent.

i think it's this fear which drives the abuse you have experienced, and as the 'climate' of chronic pain treatment shifts against opioid use (note that this is a 'climate' that's shifting and not based in new evidence/research) it's clear that it's the patients with cnmp who derive functional benefit from chronic opioid use who are going to be screwed the most.

 
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