Billboards for the Democrats

If you live in a state with hotly contested elections, your mail was full of wretchedly negative and misleading flyers last month. But, around here at least, we rarely see political billboards. When I did see one, it was this:

Billboard for conservatives.jpg

and it made me wonder why the Democrats hadn’t used billboards to get out simple positive messages about issues where there was great potential public support.

Here are some I made up, just quick mock-ups of a campaign for single-payer health care, but they give you the idea. If Obama had gotten people thinking along these lines, instead of ceding the issue to the Republicans, we might have a true universal health care system by now.

Health care for all means healthier kids billboard.jpg

“The United States provides health care to all senior citizens although children are the least expensive and most cost-effective group to cover.”

Single-payer health care for all means not losing your home to catastrophic health costs billboard.jpg

“Half of all respondents (49%) indicated that their foreclosure was caused in part by a medical problem, including illness or injuries (32%), unmanageable medical bills (23%), lost work due to a medical problem (27%), or caring for sick family members (14%). We also examined objective indicia of medical disruptions in the previous two years, including those respondents paying more than $2,000 of medical bills out of pocket (37%), those losing two or more weeks of work because of injury or illness (30%), those currently disabled and unable to work (8%), and those who used their home equity to pay medical bills (13%).

Altogether, seven in ten respondents (69%) reported at least one of these factors.” [from abstract of Christopher T. Robertson, Richard Egelhof, & Michael Hoke, “Get Sick, Get Out: The Medical Causes of Home Foreclosures” Health Matrix 18 (2008): 65-105.]

Billboardready to learn.jpg

Growing numbers of uninsured children have made it harder for educators to focus on classroom achievement without first addressing the medical needs of their students who lack health insurance or dental coverage. Instead of notifying parents when their children are ill, school officials increasingly must help find health care, arrange transportation for sick children and often advise beleaguered parents about the health consequences of their inaction. Schools that don’t accept the extra responsibility can lose those students to prolonged absences that jeopardize their academic advancement.“

And children who lack health insurance are unlikely to get help for conditions that interfere with learning, such as learning disabilities or vision and hearing problems.

Billboard “Single-payer health care for all…ask someone who already has it!”.jpg

An article about how people get happier as they get older, says it’s partly due to “resources that contribute to happiness, such as access to health care, Medicare and Medicaid”.

Billboard Single-payer health care for all…a healthier workforce”

Inadequately treated health problems result in lower productivity, greater absenteeism and turnover, and become more severe over time. Concern about losing job-related health insurance causes individuals to stay in jobs for which they are unsuited when they could be more productive and successful at other work (a situation called “job lock”).

Billboard, Universal Health Care means no more bake sales for kids with leukemia.jpg

It’s shameful to see contribution jars and raffles in local stores collecting for sick people who would otherwise be untreated. Mostly these are for kids, since we are all more sympathetic toward sick children, but there are also spaghetti feeds and various benefits put on for adults who have brain tumors or other acute and potentially fatal illnesses. And every year at this time brings those holiday campaigns in the newspaper, raising money for individuals or families, and often there’s a medical need there. One of the ones I remember was a local young man who’d lost a leg to bone cancer when he was 11; now he was working full time at a job (with no insurance) that was mostly standing, and since he was off his mother’s insurance he could not get a replacement for his outgrown prosthetic leg.

“It’s estimated that 9 million children are completely uninsured. But the new study says 11.5 million more kids end up without medical care for part of the year. And another 3 million can’t get a ride to the doctor. That’s more than 23 million children.” (2008 figures)

And finally,

Billboard Universal health care, it just amkes sense, and it’s the right thing to do

I don’t have a picture for this one. What I’d like it to be is not yet invented, some visual-mental device that reflects back to the viewer’s brain an image of him/herself, struck by a wasting disease well before the age of 65 when Medicare begins.

I do have a few more bits of information about the effects of not being insured. “Two large national studies of hospital admissions found that when the uninsured are admitted to a hospital, it is for a more serious mix of diseases and conditions, based on expected mortality, than the privately insured.…A study in California found that uninsured newborns with medical problems had significantly shorter stays (by 1.8-5.9 days) and received significantly less care (measured by total hospital charges) than privately insured newborns for several specific medical diagnoses. Another study found that the uninsured are at much greater risk of substandard hospital care due to negligence or poor quality: 40.3 percent of adverse events among the uninsured were due to negligence, compared to 20.3 percent for the privately insured who experienced adverse events.“ [source]

So the uninsured person, who is likely to be sicker when arriving at the hospital, is twice as likely to be the victim of negligent care during the stay. (Maybe it’s a mercy that the stay itself will be shorter than for the insured patient.) And the uninsured receive less treatment, whether for injury in a car accident, heart attack, or being born prematurely. More of them die, than insured people with the same conditions.

It’s a national disgrace and a drag on the economy; it’s contrary to our ideals and a terrible waste of the possibilities of human lives; it condemns many, from birth or before, to short and painful lives. It’s not open to compromise, Mr. President. You should have stood up for it and the issue should have been fully discussed before the people. If you think our attention spans are too short for extended discourse, you’re welcome to my billboard ideas.

Chronic pain—resources for patients

I haven’t written about chronic pain or fibromyalgia for many months, though I think about those subjects every day. A comment on one of my posts (Methadone and chronic pain: a personal account), raised the question of how a patient can help his family understand what he’s experiencing. Chronic pain can change a person in so many ways from facial expression to level of activity, interest in sex, mental acuity. For family, friends, and people at work, the changes can be frustrating, mysterious, threatening. What does this new behavior mean, who is this person, how long will it be like this? Why can’t s/he just live with that pain, why does it have to affect everything? Is s/he behaving like that because s/he doesn’t love me and the kids any more? Is it ever going to change back?

The person in pain is feeling a complex mix of emotions too, wanting to communicate and be close but embarrassed to admit how huge the effects of the pain really are, or to confess helplessness in the face of the pain. Will my spouse leave me, will my boss fire me, will I be thought crazy or weak, manipulative or a malingerer?

Patient
Can’t know how others feel about his or her pain and changes
Does know it has a negative effect, and may feel guilty about it
May feel helpless, resentful, guilty, frustrated, angry
Afraid to ask

Family and friends
Can’t know how patient feels physically or mentally
May feel helpless, resentful, guilty, frustrated, angry, abandoned
Afraid to ask

It’s the classic set-up for terrible misunderstandings and friction: intense emotions on each side, big stakes at risk (marriage, jobs, survival of relationships you’ve spent years building), and neither side knows what to say.

Then there’s dealing with the medical establishment, not easy for the person with chronic pain. Treating chronic pain is frustrating and unrewarding for physicians. The pain is invisible and resistant to treatment, progress is measured subjectively by the patient, misuse of pain medications is a serious risk, and perceived pain is affected by emotional and social factors outside a doctor’s comfort zone.

I’m choosing three parts of this huge subject to address now. First, ways to track your pain level and medications’ effects so that you can discuss them more clearly with others, including family and physician. Second, articles on families and chronic pain. Third, an annotated list of links to the major organizations concerned with pain, where more resources can be found.
My hope is that individuals can find tools here to help them get started with communicating better, understanding better. The tools are not the conversation, but they may be the foundation for it. To build on that foundation requires each of us to expose vulnerability, to admit how much other people mean to us, and to practice patience and compassion every day. And keep your sense of humor in good working order!

To that end, here’s an interruption, with a cartoon that nosleepingdogs has been saving for just the right occasion, and she hopes this is it. (Cartoon by Bizarro, reproduced without permission but with great appreciation.)

Bizarro,onNosleepingdogs.jpg

Making the invisible, visible

How can we pain patients help others understand what we’re feeling? Pain is invisible, it varies in type and intensity, and everyone has had some pain so they all think they know what chronic pain is like. Keeping a daily record, with numeric measurements, will give something concrete to point to, showing that you’ve had no pain-free days for the past month, or that your pain consistently increases under certain conditions. Such records are called pain diaries, journals, or logs, and they are a very useful aid in talking to doctors as well as to family members. They also give patients a way to know, and remember later, how this week’s pain compares to that of last week, or how this pain med compares to the one we used previously.

The heart of the pain log is a measurement scale for pain, like this one from the National Institutes of Health.

Numeric Rating Scale and use.jpg

At one end is “no pain”, at the other end “severe” pain, with the 10 at the end often described as the worst pain you can imagine. Record numeric pain ratings on your log form as often during the day as you think will be helpful. I’ve gathered several forms from various sites, which you can download or print directly. Because links change, I’m giving not only the original link to the site presenting the form, but also a link to a copy of the form hosted on my blog. The forms are free for personal use, I think none of these organizations will object, but not for any commercial purpose. Or, you can design your own form, and I include a sample that I made in a few minutes in a word processor.

Choose a form that lets you record the additional information that you think is important. Some include what meds you took and when, so you can compare that to changing pain level. Others have places to record levels of stress, quality of sleep, amount of exercise, and mood. I recommend photocopying or printing at least a month’s worth, and stapling them or putting them in a notebook. Be conscientious about this. It doesn’t take long to fill in the day’s information, and the value lies in writing it down at the time, and every day. Once a week won’t be much good, nor will it work to try and remember how you felt last week. Just do it, maybe when you brush your teeth at night, or after taking each medication, or after each meal.

Pain log templates

The thumbnails are just pictures, not links. View or download the forms with the links at the end of the description. All forms are in pdf format.

Here is the Daily Pain Diary Form from Partners Against Pain. It consists of 2 pages; one in graph format to record pain level and meds taken, the other with questions about breakthrough pain, sleep, side effects, other things you did to help relieve your pain, etc. Download or view this form from the original site, or from my blog files.

Daily_Pain_Diary.jpg

Next is the Pain Management Log, a simpler one-page form from Partners Against Pain. It records date, time, severity of pain, medicine or non-drug control method used, how severe the pain is one hour later, and activity at the time of pain. It can be used for a single day, or you can make entries for successive days on the same page. Download or view this form from the original site or from my blog files.

Pain Management Log from www.partnersagainstpain.com

The 8.5×11 Pain Log is a 2 page form, from the American Chronic Pain Society, unusual in that it uses cartoon-like symbols for levels of pain, exercise, stress, etc. Download or view this form from the original site or from my blog files.

8 5x11 Pain Log from the American Chronic Pain Society

The form pictured below is the one I made up quickly myself in a word processor, just as an example for those who want to design their own. One page. Download or view this form from my blog files.

Original pain form made on a word processor.

Next are two forms that are not for daily use but would be good to fill out before a visit to your doctor, as a sort of summary or review of a period of time. First, a 6-page questionnaire called Keeping Track of Your Care, from Partners Against Pain. (It seems to have been designed for cancer patients, but will serve other pain patients just as well.) In addition to summing up pain, meds taken, and that sort of thing, it also has a list of questions about the effect of the pain upon your life over the time period, and the usual drawing of a body front and back on which to indicate location of pain. The list of questions would be good to review before going to see your pain doctor each time, to be sure you bring up all your concerns.

This questionnaire also asks “What is your goal for relief?”, a great question to consider, and let your physician know what your goal is. It’s a good question for two reasons: one, you need to realize that zero pain may not be an achievable goal, and if it is not, what is your secondary goal? To continue working, to enjoy better relationships with your loved ones, to be able to be active for 6 hours a day before you have to stop, to get your pain from an 8 to a 3? Important issues to think about. And, second, it gives both you and your physician something defined to strive toward. Download or view this form from the original site or from my blog files.

Keeping Track of Your Care from http://www.partnersagainstpain.com/printouts/A7012PD2.pdf

Second, the 2-page Patient Comfort Assessment Guide, another from the Partners Against Pain organization.
Like the preceding template, this is not a daily record but the sort of thing that your pain doctor might have you fill out regarding your pain, meds taken and how much relief each gives on a numeric scale, side effects, and how pain has interfered with different aspects of your life in the past week, including mood, sleep, ability to concentrate, normal work, etc. Download or view this form from the original site or from my blog files.

Patient Comfort-Assessment Guide, another from the Partners Against Pain organization

How pain records help you talk to your doctor

Pain doctors have to have a way to decide upon, and justify, the medications they give you (or prescriptions for physical therapy, TENS units, referrals to nerve specialists, etc.). They can feel much more confident if you bring in a photocopy of your pain journal for them to keep in the file, with times, dates, and numeric ratings, than if you just come in and say “Doc, I need something stronger, this prescription just isn’t helping me.” If you feel your journal shows something in particular, go over the entries with your physician. Maybe your journal will show that what you need is medication for “breakthrough pain”, to be used occasionally as needed to keep the pain from getting the upper hand. Or maybe there will be a pattern telling the doctor something you’re not even aware of.

It is absolutely in your best interest to keep a pain journal, and keep it accurately. Don’t inflate what you are feeling. But—and here is another way pain records can help— do use them to show the doctor exactly how the uncontrolled pain is affecting your life. Restoring you to your previous level of functioning is the pain doctor’s aim, not making you feel good. That, I’m afraid, is up to you, perhaps with some help from anti-depressants or the like. But your doctor knows that people don’t feel good when they can’t do the normal things in their life because of pain, so improving function does, indirectly, also improve mood and enjoyment of life.

When my pain was at its worst, I began to think of my life as a sinking ship, from which everything nonessential was being thrown overboard. Anything I did just for enjoyment, over it went. The “have-to’s” of course were kept: working, commuting, taking a shower, shopping for food, and so on. Your pain journal can be the evidence of how much of your life has been “thrown overboard”, or become very difficult, because of pain (and the fatigue that goes with it). Choose a journal template that will help you record this, as well as levels of pain and how well meds or other methods work.

How pain records can help you

They can help you measure progress, or lack of it, over time. When you feel rotten all the time, the days can all blend together. Then you look back at your records and see that 6 months ago you couldn’t walk a block, or sit in the car for more than 15 minutes. Now both of those things have improved. “Wow! I’m making progress!” Give yourself a pat on the back, figure out what made the difference, and work on it some more. Or, no progress? backward movement? Then you know what you are doing is not working, and you and your doctor need to talk about this. And you’ve got the evidence on paper to show her or him, rather than just walking in and saying that you feel worse than ever.

What’s on paper can also help your family understand your situation, what you are going through. They may not need to look at the pages, but just being able to say that for the last month your pain level hasn’t been below 6 on a scale of 1 to 10, is a concrete representation of something otherwise invisible and hard to think about. “Dad hurts all the time” doesn’t have the same impact.

Articles for chronic pain patients and their families

My search for reading material I can recommend has just begun, it seems, since so far I’ve found only one article, and no books. I’m hard to please, apparently. I have no use for material that doesn’t adequately distinguish between addictive behavior, and the behavior of a pain patient who’s become habituated to opioids (see earlier post, Dr. House’s writers betray pain patients), or for intimations that people with chronic pain just need to think positive thoughts and get some exercise. (Though I won’t deny, both of those are good things! Both can make you feel a little better, too, but they are not cures for pain, and many people are in such pain that the advice is a mockery.)

Surviving a Loved One’s Chronic Pain. This article was written by a pain doctor as a handout to patients.

This handout was inspired by a patient of mine who came into my office and inquired what resources were available for the family members of patients with pain to help them understand what their loved ones were going through. He discussed how his wife was frequently angry at him for not doing more physically at home while she was at work and how she often yelled at him. He felt guilty about it, but felt he did as much as he could tolerate. I was embarrassed to admit that I did not know of any handouts explicitly directed at spouses, family members, and other loved ones. After doing some research on the Internet, I discovered several very helpful publications, specifically Julie Silver’s 2004 book, Chronic Pain and the Family: A New Guide (Harvard University Press) and the American Chronic Pain Association family manual, ACPA Family Manual: A Manual for Families of Persons with Pain, written by Penny Cowen (ACPA, 1998). I also found some helpful articles by Mark Grant, a psychologist in Australia, especially his “Ten Tips for Communicating With a Person Suffering From Chronic Pain,” which is available on his website, http://www.overcomingpain.com. Mark was kind enough to allow us to summarize his suggestions here. As well, one of us (Whitman) has a website to help patients cope with chronic pain, and occasionally discusses family issues on it (www.howtocopewithpain.org). Much of what is in this handout is taken from these sources.

What was striking, however, is how little material there was oriented toward the family compared to the massive amount of self-help material oriented to the patient with pain. In view of the profound effect the patient’s pain has on the family and the equally profound effect the family’s (and friends’) responses have on the patient with pain, I found this troubling. I also felt that while Silver’s book and the ACPA manual were very helpful, few family members would get them and fewer read through them. What was needed, I felt, was something brief and to the point. This is the result of that determination.

Surviving a Loved One’s Chronic Pain, four pages, available as a pdf from the original source, pain-topics-org, or from my blog files.

This article recommends another that I agree on, “Ten Tips for Communicating With a Person Suffering From Chronic Pain” available at overcomingpain.com or from my blog files.

Organizations concerned with pain

American Pain Society
a professional medical organization with some education functions. They do research on sub-topics in pain and also some advocacy.

Publications include:
Guides for Persons with Pain
Patient Guide: Managing Osteoarthritis Pain
Consumer Guide: Managing Rheumatoid Arthritis
Parent Guide: Managing Pain from Juvenile Chronic Arthritis
Guide for Adults with Cancer Pain
Guide for Adults with Fibromyalgia Syndrome Pain
The above are short pamphlets, 12-16 pp and are offered for sale in sets of 25 of one title, for medical. There is no version that can be read online as far as I could find.

American Pain Association

They say, “Pain has been ignored as a problem by the medical science and society for a long time. The fact that America still doesn’t have a National Institute of Pain indicates this lack of attention towards pain. Surprisingly, America does have a National Institute for Addiction. The primary efforts of the American Pain Association are directed towards education and research. We are also working in the area of developing expert consensus statements regarding pain issues.”

Seems to be mostly a professional organization, offering certification courses in pain, and basic and advanced courses in pain management for all medical personnel including nurses, physicians, pharmacists.

American Pain Association page summarizing new methods of pain relief, will give you some ideas to research or ask about.

American Chronic Pain Association

A previous organization, the National Pain Foundation, is merging with the ACPA.

The ACPA has some very good informational resources, including their Chronicle (archives here). For example, the Summer 2006 issue was devoted to nerve pain.

Partners Against Pain, source of many of the forms I’ve described above. They describe themselves as “a resource that serves patients, caregivers, and healthcare professionals to help alleviate unnecessary suffering by advancing standards of pain care through education and advocacy.” Advocacy is a major element of their work, but other material is available too. They publish a Resource Guide for People in Pain which contains some of the forms above, and others including checklists for doctor visits or the ER, as well as sections on other aspects of health that are good to review, like nutrition, stress, and exercise; it also has lists of organizations concerned with certain diseases or conditions, or professional fields, or patient support. I recommend skimming through it for what you need at the moment. Read or download it here.

American Pain Foundation

APF is an education & advocacy group, which actively works with the news media on conveying pain issues, and publishes a semi-annual Pain Research and Practice Update. The Summer 2010 issue is here.

They have a library of online materials which I haven’t explored yet, but it looks worth checking out. Here’s the directory:

Information Library

• Audio/Video Replays
• Chat Transcripts
• Pain Conditions
• Pain Topics
• Publications
• Q&A About Pain
• Top Ten Tips for Coping
• Webinar/Teleconference Replays

Pain Resource Information
• Financial Information & Assistance
• Finding Care
• Journals
• Pain Law & Ethics
• Pain Links 
• Pain Resource Locator

Programs & Campaigns
• Acute Pain Spotlight
• Back Pain Spotlight
• Breakthrough Cancer Pain Online Guide
• Cancer Pain Spotlight
• CareCentral for Caregivers
• End of Life Care Spotlight
• Exit Wounds – Military/Veterans Pain Initiative
• Fibromyalgia Spotlight
• Health Decision Making Online Guide
• Let’s Talk Pain
• Shingles & Post-Herpetic Neuralgia Spotlight
• Yoga for Chronic Pain & Disability

The vocabulary of pain

Pain and its treatment have a specialized vocabulary. I found some online glossaries that may be of interest in understanding exactly what is being talked about.

Chronic Pain Glossary of Terms
Pain management: Glossary of terms

American Pain Society Glossary of Pain Terminology

How to reduce your Medicare Part D costs

SEE CORRECTION AT END

If you have Medicare Part D, you know about the “doughnut hole” in the coverage. On my plan, through Humana, I pay 100% for prescriptions after total costs reach $2880 within a calendar year. If and when the total reaches $4550, then the plan kicks in again. Reaching the doughnut hole means you’ve either had a single very expensive episode, or you’re on high-priced monthly medications. I had thought I was doing okay.

Then last November the pharmacy told me that one of my regular drugs was in short supply nationwide and they had to substitute another similar drug. My doctor approved it. I didn’t think it worked quite as well, but there seemed to be no choice. My co-pay had been less than a dollar, and went up to $7, but I didn’t really think about that. I talked to the pharmacist twice, over the months, about switching back but each time the supply of the former drug was not yet stable.

Imagine my surprise when I looked over the detailed claims records just now, and found that it was costing $165 per month in November and now in July it’s $183. Six months of this substitute drug during 2010 has added over $900 to my total, nearly doubling it, and pushed me alarmingly close to the no-coverage point of $2830. I would have been at about $1000 total cost for this calendar year, with $1800 to go before coverage ended; now I’m at $1927.

This is a good reason to keep a close eye on your monthly statements and catch this sort of thing as early as possible. Your out-of-pocket costs may not be a good indicator of the total cost, which determines when you reach the “doughnut hole”. Although I had asked my pharmacist twice this year about going back to the original medication, I didn’t push it as hard as I would have if I had realized how much the substitute was costing.

I wish I had a week to put into researching pharmaceutical companies: what drugs are made where, results of FDA inspections, promotion of drugs for unproven uses, suppression of negative trials, why certain drugs suddenly are in short supply (collusion?), how pharmaceutical companies maximize their profits by manipulating patent law, and so on.

Here is just one of the many stories to be found, one that the House just took action on. Companies that own patented drugs sometimes reach “licensing” agreements with small companies that have developed generics, and by such agreements they prevent the generics [see ‘Pay-for-Delay’ Deals Cost Consumers $3.5 Billion a Year which summarizes a long FTC report of the same title available here, and If Pay-for-Delay Deals Are Good for Consumers, Why Do Companies Sign Them?] from being marketed even after the patent has expired. A chart in the FTC report shows the number of these agreements increasing from 0 in 2004 to 19 in 2009.

On July 2, Bloomberg News reported:

The U.S. House approved a measure restricting the ability of drugmakers to enter agreements that the Federal Trade Commission has said keep generic medicines off the market. … The restriction was included in an amendment to the war- funding bill, approved on a 239-182 vote.

Something we all might want to write our Senators about, to urge them to follow suit. The more generics are available in this country, the lower our costs will be as individuals, and the less our country will spend on health care. Let’s not worry too much about the profits of Big Pharma:

PharmaProfits.jpg

Chart from an AFL/CIO publication.

CORRECTION
Not all of my unexpected total prescription cost was caused by the substitute drug (costing almost 20 times the original that was “in short supply” nationwide). There was a sudden jump due to my choosing in June to get an expensive newly prescribed drug in a 3-month supply via Humana’s mail-order pharmacy delivery. That added over $600 to the total, and since it occurred in June I haven’t yet gotten the paper cost-summary from which I would have known this. I thought I’d save a bunch of money by going the mail-order route, but in reality the saving was very little.

Changing the American Health Care system

I responded to an email from moveon.org today, which wanted me to sign a petition to my Senators and Representative stating:

Full petition text:
“I strongly believe that Americans should have the choice of a public health insurance option operating alongside private plans. This will give them a better range of choices, make the health care market more competitive, and keep insurance companies honest.”

My convictions on this matter are different from moveon.org’s and from the position that Congressional Democrats like Baucus are putting forth, and so in the area for appending comments to be sent, I said:

Actually, this petition misrepresents my beliefs on this issue, based on 63 years of observation.

The single payer option is what we must adopt. A separate “public health insurance option “ will burden the taxpayer with the most expensive patients while the private plans take the profitable healthy younger patients. We have let this happen with FedEx and the Postal System, and private charter schools and public schools. The tax-supported option ends up with the mandate of accepting the part of the market that is least profitable.

We all know that the health care mega-corporations and industry groups will promise *anything* now, like a person being waterboarded. Five years from now will they be so devoted to the health of every American? No chance. And once this process is over, we are stuck with it—there will not be the political will to make substantial changes for another generation or more.

Mind you, I don’t think there’s much chance of a single-payer option coming to pass. American politics runs on money, and who’s got more of it than the “medical-industrial complex”? Americans have more passion and energy to invest in American Idol than in their own health and survival.

What the US now spends on health care

Here are some interesting figures, from the National Coalition on Health Care, a non-profit coalition bringing together “large and small businesses, the nation’s largest labor, consumer, religious and primary care provider groups, and the largest health and pension funds”, with 2 former presidents as Honorary Co-Chairs, Bush the first and Jimmy Carter. So their figures are likely to be well-researched and certainly not wildly radical.

National Health Care Spending

In 2008, health care spending in the United States reached $2.4 trillion, and was projected to reach $3.1 trillion in 2012.1 Health care spending is projected to reach $4.3 trillion by 2016.1
Health care spending is 4.3 times the amount spent on national defense.3

In 2008, the United States will spend 17 percent of its gross domestic product (GDP) on health care. It is projected that the percentage will reach 20 percent by 2017.1

Although nearly 46 million Americans are uninsured, the United States spends more on health care than other industrialized nations, and those countries provide health insurance to all their citizens.3

Health care spending accounted for 10.9 percent of the GDP in Switzerland, 10.7 percent in Germany, 9.7 percent in Canada and 9.5 percent in France, according to the Organization for Economic Cooperation and Development.4

footnotes refer to these sources:

1 – Keehan, S. et al. “Health Spending Projections Through 2017, Health Affairs Web Exclusive W146: 21 February 2008.

2 – The Henry J. Kaiser Family Foundation. Employee Health Benefits: 2008 Annual Survey. September 2008.

3 – California Health Care Foundation. Health Care Costs 101 — 2005. 02 March 2005.

4 – Pear, R., “U.S. Health Care Spending Reaches All-Time High: 15% of GDP.” The New York Times, 9 January 2004, 3.

Dr. House’s writers betray pain patients

As a chronic pain patient who took methadone for years, and experienced a lot of misunderstanding from medical professionals and laypersons about addiction, I greeted the House series with hope when I first saw it. It’s smart and interesting as tv goes, and Hugh Laurie is a fine actor who has done well with the unusual role. But beyond that, I thought having a chronic pain sufferer as a main character presented a great opportunity to break the stereotype that “taking pain meds longterm = addiction”. Dr. Gregory House is certainly well-informed about medical science as opposed to drug war hysteria, and no one can deny that he’s assertive!

Dr-gregory-house.jpg

Source unknown, appears only on generic odd picture sites. Found with Google image search.
House’s halo may fade as you read on.

However, the writers and producers are promoting the familiar hackneyed clichés about addiction–––worse, these clichés are false and are no longer accepted in current medical thought. And House, of all people, is represented as knowing no better, and accepting the label of “addict”.

Two of the doctors House works with (his boss Cuddy and his friend Wilson) say frequently that House’s professional and personal abilities are being damaged by his “addiction” (his everyday use of vicodin for constant severe pain in his leg), and this conflict has played out in many episodes in the first three years. [We never seem to watch the Fox channel, so we see House in reruns on other channels; if there has been a drastic change in the last season I wouldn’t know about it. But I doubt there’s been a change in a theme which has been used so often.]

I was moved to write this by seeing again the old episode titled “Detox” (episode 11, season 1, 2005). Cuddy challenges him to go a week without vicodin to “prove he’s not an addict”. House accepts the challenge, his prize being a month of no clinic duty, and he also accepts the premises: that if he shows signs of physical withdrawal it means he is addicted. He does show these signs, though he tries to hide or deny them, and he also suffers greatly increased pain. Feeling nauseated, he’s told that it’s withdrawal, and replies “No, I’m in pain. Pain causes nausea.” Maybe so, but withdrawal from opioids does too. Finally the pain and withdrawal symptoms make it impossible for him to function as his usual professional self: hyper-smart and intuitive diagnostician. A patient is depending on him, and so are his diagnosticians-in-training, and one of the latter gives him some vicodin and tells him to take it because he’s not able to do what needs to be done.

At the end, asked what he has learned, House says (close paraphrase): I’m an addict….But I’m not going to quit…I pay my bills, I work, I function.

His friend Wilson says, You’ve changed, you’re miserable and you’re afraid to face yourself…Everything’s the leg, nothing’s the pills?

House: They let me do my job, and they take away my pain.

So, House won’t abandon the vicodin because he cannot function without pain relief, but he caves to the notion that he is an addict.

There are so many things wrong with this, and the writers of a medical show ought to know better.

Addiction Versus Dependence

The refusal to distinguish between these two terms has cursed our management of pain for fifty years or more. But in the last couple of decades medicine has, at last, officially separated the two. Here is a discussion of the terminology from an authoritative source, a Consensus Document issued jointly by The American Academy of Pain Medicine, The American Pain Society and the American Society of Addiction Medicine, called Definitions Related to the
Use of Opioids for the Treatment of Pain
. [I quote at length, so it will be clear that this represents exactly and completely the sense of this document. Emphasis is added.]

BACKGROUND

Clear terminology is necessary for effective communication regarding medical issues. Scientists, clinicians, regulators and the lay public use disparate definitions of terms related to addiction. These disparities contribute to a misunderstanding of the nature of addiction and the risk of addiction, especially in situations in which opioids are used, or are being considered for use, to manage pain. Confusion regarding the treatment of pain results in unnecessary suffering, economic burdens to society, and inappropriate adverse actions against patients and professionals.

Many medications, including opioids, play important roles in the treatment of pain. Opioids, however, often have their utilization limited by concerns regarding misuse, addiction and possible diversion for non-medical uses.

Many medications used in medical practice produce dependence, and some may lead to addiction in vulnerable individuals. The latter medications appear to stimulate brain reward mechanisms; these include opioids, sedatives, stimulants, anxiolytics, some muscle relaxants, and cannabinoids.

Physical dependence, tolerance and addiction are discrete and different phenomena that are often confused. Since their clinical implications and management differ markedly, it is important that uniform definitions, based on current scientific and clinical understanding, be established in order to promote better care of patients with pain and other conditions where the use of dependence-producing drugs is appropriate, and to encourage appropriate regulatory policies and enforcement strategies.

RECOMMENDATIONS

The American Society of Addiction Medicine (ASAM), the American Academy of Pain Medicine (AAPM), and the American Pain Society (APS) recognize the following definitions and recommend their use:

ADDICTION

Addiction is a primary, chronic, neurobiologicneurobiological disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.

PHYSICAL DEPENDENCE

Physical dependence is a state of adaptation that often includes tolerance and is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist…

TOLERANCE

Tolerance is a state of adaptation in which exposure to a drug induces changes that result in a diminution of one or more of the drug’s effects over time.


DISCUSSION

Most specialists in pain medicine and addiction medicine agree that patients treated with prolonged opioid therapy usually do develop physical dependence and sometimes develop tolerance, but do not usually develop addictive disorders. However, the actual risk is not known and probably varies with genetic predisposition, among other factors. Addiction, unlike tolerance and physical dependence, is not a predictable drug effect, but represents an idiosyncratic adverse reaction in biologically and psychosocially vulnerable individuals. Most exposures to drugs that can stimulate the brain’s reward center do not produce addiction. Addiction is a primary chronic disease and exposure to drugs is only one of the etiologic factors in its development.

Addiction in the course of opioid therapy of pain can best be assessed after the pain has been brought under adequate control, though this is not always possible. Addiction is recognized by the observation of one or more of its characteristic features: impaired control, craving and compulsive use, and continued use despite negative physical, mental and/or social consequences. An individual’s behaviors that may suggest addiction sometimes are simply a reflection of unrelieved pain or other problems unrelated to addiction. Therefore, good clinical judgment must be used in determining whether the pattern of behaviors signals the presence of addiction or reflects a different issue.

Behaviors suggestive of addiction may include: inability to take medications according to an agreed upon schedule, taking multiple doses together, frequent reports of lost or stolen prescriptions, doctor shopping, isolation from family and friends and/or use of non-prescribed psychoactive drugs in addition to prescribed medications. Other behaviors which may raise concern are the use of analgesic medications for other than analgesic effects, such as sedation, an increase in energy, a decrease in anxiety, or intoxication; non-compliance with recommended non-opioid treatments or evaluations; insistence on rapid-onset formulations/routes of administration; or reports of no relief whatsoever by any non-opioid treatments.

Adverse consequences of addictive use of medications may include persistent sedation or intoxication due to overuse; increasing functional impairment and other medical complications; psychological manifestations such as irritability, apathy, anxiety or depression; or adverse legal, economic or social consequences. Common and expected side effects of the medications, such as constipation or sedation due to use of prescribed doses, are not viewed as adverse consequences in this context. It should be emphasized that no single event is diagnostic of addictive disorder. Rather, the diagnosis is made in response to a pattern of behavior that usually becomes obvious over time.

Pseudoaddiction is a term which has been used to describe patient behaviors that may occur when pain is undertreated. Patients with unrelieved pain may become focused on obtaining medications, may “clock watch,” and may otherwise seem inappropriately “drug seeking.” Even such behaviors as illicit drug use and deception can occur in the patient’s efforts to obtain relief. Pseudoaddiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.

Physical dependence on and tolerance to prescribed drugs do not constitute sufficient evidence of psychoactive substance use disorder or addiction. They are normal responses that often occur with the persistent use of certain medications. Physical dependence may develop with chronic use of many classes of medications. These include beta blockers, alpha-2 adrenergic agents, corticosteroids, antidepressants and other medications that are not associated with addictive disorders.

How important are definitions?

Few things are more important. We interact with the world through language. Words cause emotional reactions, compose our thoughts, represent us to others. Would you want to be introduced to a group of strangers as an “addict” or as a “pain patient”?

Let’s look at the decision to replace “addiction” with “dependence” in the fourth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV). This thick volume is the official dictionary and guide for defining mental disorders, including addictive behaviors. (Change in the DSM can contribute to profound social and legal change––as when, after a series of redefinitions, homosexuality was finally removed from the list of disorders in 1987.) An editorial in the American Journal of Psychiatry (2006) discusses this decision to use “dependence” not only to describe physical dependence, but also for addiction, as differentiated in the document quoted above.

All of the authors of this editorial are involved in the next revision of the DSM (DSM-V), and one has been part of the revisions since the 1980’s. They favor changing back to a distinction between “addiction” and “dependence,” and describe how the decision was made to merge both into “dependence”:

Those who favored the term “dependence” felt that this was a more neutral term that could easily apply to all drugs, including alcohol and nicotine. The committee members argued that the word “addiction” was a pejorative term that would add to the stigmatization of people with substance use disorders. A vote was taken at one of the last meetings of the committee, and the word “dependence” won over “addiction” by a single vote.

It was a victory for Political Correctness!

The authors criticize the widening of the term because of the negative effect on pain patients:

This [redefinition] has resulted in confusion among clinicians regarding the difference between “dependence” in a DSM sense, which is really “addiction,” and “dependence” as a normal physiological adaptation to repeated dosing of a medication. The result is that clinicians who see evidence of tolerance and withdrawal symptoms assume that this means addiction, and patients requiring additional pain medication are made to suffer. Similarly, pain patients in need of opiate medications may forgo proper treatment because of the fear of dependence, which is self-limiting by equating it with addiction.

A Canadian article (2006) describes the reluctance of many physicians to prescribe opioids for pain, and why they are reluctant:

In a recent national survey, 35% of Canadian family physicians reported that they would never prescribe opioids for moderate-to-severe chronic pain, and 37% identified addiction as a major barrier to prescribing opioids. This attitude leads to undertreatment and unnecessary suffering.

This is over one-third of Canada’s doctors who will never “prescribe opioids for moderate-to-severe chronic pain” no matter what. We cannot know how many would do the ethical thing and refer such patients to someone more experienced in treating pain, and how many just leave the patients to their own devices. If 35% would never prescribe opioids, some additional percentage would fall into the “rarely” category, which also results in undertreatment of pain.

Why does medical opinion on a fictional TV show matter?

Current medical “best practices” and principles regarding the differentiation of addiction from dependence have been slow to reach doctors and other medical professionals, let alone the public. Of course doctors should not be getting their medical information and attitudes from television, but television has a strong influence on viewers who know little about the topic presented–that’s all of us who are not medically trained. A person who believes that taking opioids results in addiction is far less likely to push for adequate pain treatment for him/herself, or family, and may even reject it if offered. If friends, relatives, and employers of pain patients share the confusion about addiction, they will exercise social pressure or threaten loss of employment. So the attitudes promoted by a popular TV show––in the US, House was the most-watched scripted program on TV during the 2007–08 television season––can have profound effects on the health care people receive.

When House stops taking the vicodin, he suffers headaches, sleeplessness, nausea, inability to concentrate, and irritability. All are symptoms of physical dependence, as in the definition paper cited above. That these same symptoms are felt by addicts is beside the point: addicts and chronic pain patients both are physically dependent, and both will suffer similar withdrawal symptoms as a result. For the pain sufferer, the symptoms of increased pain are added.

As a pain patient, I have experienced withdrawal from methadone. It is hell. It gave me much more compassion for addicts. Yet, in trying to get off methadone “cold turkey” when my doctors claimed they could not assist me, I went through seven days and nights of absolutely no sleep, intense physical and mental suffering from the withdrawal, and increased pain. There’s the pain you were medicating, and in addition the cessation of methadone makes all your bones ache, worse than any flu. And all this time the methadone was on the shelf. Untouched. Not typical addict behavior. On the eighth day with no sleep I realized that there had been no lessening of my symptoms, and that I could not endure it another 24 hours, so with distaste and reluctance I began taking the methadone again. I resolved then that I needed to find different doctors, who would help me through this, and subsequently did so with complete success. (I wrote about this in an earlier post.)

In my case the pain being treated had changed (improved, by a nerve block) during my time on opioids; the increased pain I had during withdrawal was nothing like that which House suffered from his leg. He showed great fortitude and self-control, but while dramatic it was medically pointless. The man has pain so bad he cannot function if it is not controlled; if nothing else works other than opioids, then that’s what he needs to use. Current medical thought recognizes this; the writers of the show do not.

Some of the behaviors relative to pain medication shown by House are reprehensible, such as stealing medication and forging prescriptions. This seems like classic drug addict behavior. But see the paragraph above on Pseudoaddiction, including the statement “Even such behaviors as illicit drug use and deception can occur in the patient’s efforts to obtain relief. Pseudoaddiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.” In fact, much of House’s often-criticized behavior has to be considered in light of the fact that even the vicodin never adequately relieves his leg pain. Irritability, mental and physical restlessness, combativeness, and harsh remarks can be the signs of unrelieved physical pain.

pain behavior chart.jpg

Chart from “Pain Assessment in Older Adults” (2006). The source references mentioned at the bottom of the chart are : 8. The management of persistent pain in older persons. American Geriatric Society (AGS) panel on persistent pain in older persons. J Am Geriatr Soc. 2002;50:S205-S224; and 9. Ferrell BA, Chodosh J. Pain management. In: Hazzard WR, Blass JP, Halter JB, et al. Principles of Geriatric Medicine and Gerontology. 5th ed. New York: McGraw-Hill Inc; 2003:303-321.

We have been told that even before his leg injury, House wasn’t a sunny sociable person. But he’s gotten worse since then, and in the show the doctors around House nearly always blame his pills––his addiction–not his pain.

Addicts and pain patients, differences and similarities

I intended to include some data here about the low actual rate of addiction (not dependency) in pain patients as a result of taking pain meds. I remember reading figures that ranged from 5% to 10%. When I did a quick search for substantiation I found that many of the research articles online are only available for a fee. The rates I did see varied so much, I must assume that the studies are not all using the same standards. Different researchers have different definitions of addiction vs. dependence; there is also an overlap of characteristics or symptoms between addicts and those who are physically dependent. If I had had no legal access to relief when I was in extremis after seven days of no methadone, I probably would have lied or stolen, if necessary to end the withdrawal. Nothing violent; I would have gotten myself somehow to the emergency room instead. But if turned away there, who knows?

This is the sort of mental and physical suffering that confronts the organism with a stark choice: solve this, or die. (If you are too debilitated to protect yourself or find food, you will die, as far as the primitive part of our brain is concerned.) Once physical dependency has been established, both addicts and pain patients are motivated to get their drugs, driven more powerfully than anyone can imagine who has not experienced it. The distinctions between addict and dependent patient must be made on criteria other than the evidence of physical dependence, since this is the same for both.

The chart below presents some criteria that seem to square with my experience and reading, although the source does not give scholarly or research citations for it.

Chart,addict-patient.jpg

[The last item under Addicts should read “The life of an addict is a continuous downward spiral.”]

Individual responses to potentially addictive drugs vary. Not everyone who tries heroin becomes addicted. Different responses are based on biological and psychological factors we are only beginning to glimpse: everything’s neurological in the end, I suppose, but increasingly it appears that experience (from conditions in utero to nutrition, upbringing, and exercise) can cause physical changes in the brain and nervous system, and therefore in thinking, emotion, and behavior [see note 1]. Even the physical brain, where our sense of “I” resides, is changeable throughout our lives: adapting, adding complexity, growing (or shrinking) based on what happens to us. The activity of our genes themselves can be enhanced, reduced, suppressed entirely, depending on outside conditions from before birth to the day we die.

How should society regard people with chronic pain?

When a starving person steals bread, we do not say that he should have simply endured his hunger, or that he is “addicted” to food. Believe me, the situation of a person in great pain, or even moderate chronic pain, is also desperate and unbearable, and the organism will get relief.

The compassionate and socially responsible action is to meet these needs in an appropriate way. Can we assist this starving person in earning money so as to feed himself or herself? If not, most of us agree that the helpless, the elderly, the people so injured by life as to be unemployable, should receive aid rather than be allowed to starve or freeze to death. The pain patient deserves the same action: the question to be asked is: How can the pain best be alleviated? There may be surgical options, transfer to a different job, physical therapy, use of TENS units and the like, as appropriate. Meditation, mild exercise, and cognitive training may offer some relief too. But the response to pain must not be limited to only non-drug approaches.

The patient is the final judge of what works, and how much pain is too much, and the patient should not be silenced with threats and accusations of addiction.

A question that needs to be asked about drug addiction is Why? Why do so many of our fellow citizens seek out heroin, cocaine, methamphetamine, illegal prescription drugs, too much alcohol? What is their pain? Not physical, perhaps, but certainly psychological or spiritual: despair, lack of meaning in life, lack of true positive connexion to other human beings and to the natural world. Until we approach drug addiction in this way we will never understand how to reduce its occurrence. Neither after-the-fact tactics (punishment, ostracism, rehab), nor prevention (education and interdiction) have worked very well. But asking Why? about addiction would reveal aspects of our society that are senseless and cruel to many, but pleasant and profitable for a few. Danger, ssssshh!

We have been so cowed and brainwashed by the continually failing War on Drugs and our native streak of puritanism that we even permit medical professionals to deny adequate pain relief to terminal cancer patients. Is it really because they “might get addicted” in the weeks before they die? Or is it the imposition of society’s fears and prejudices upon the most helpless among us? Clearly, we have made little progress in reducing the numbers of illegal drug users over the past forty years––but law-abiding people who go to doctors, they can be denied and controlled.

And so, apparently, can Dr. Gregory House, who is pitched to us as the independent thinker extraordinaire, smart and brave, ready to track truth to its lair and drag it out into the daylight. I wish his writers would let him do exactly that on the issue of pain and addiction.

1. Further reading on the “plasticity” of the brain (an unsystematic quick gathering)

  • Scientists map maturation of the human brain (2003), a short overview
  • Brain changes significantly after age 18 (2006), “The brain of an 18-year-old college freshman is still far from resembling the brain of someone in their mid-twenties. When do we reach adulthood? It might be much later than we traditionally think.”
  • Research finding persistent physical and functional changes in human brains caused by smoking, chemotherapy,
  • Empirical research on structural brain changes affecting social cognitive development after childhood (2007);
  • Various environmental factors can cause “epigenetic changes…reversible heritable changes in the functioning of a gene can occur without any alterations to the DNA sequence. These changes may be induced spontaneously, in response to environmental factors…” and be associated with development of schizophrenia and other psychiatric disorders or the quality of an individual’s performance as a parent
  • Childhood lead exposure can predict criminality(2008), even after controlling for factors such as socioeconomic status of the family; “Lead can interfere with the brain by impairing synapse formation and disrupting neurotransmitters, such as dopamine and serotonin. It also appears to permanently alter brain structure.”