Jared Lee Loughner has mental health care now, the best that federal custody and lawyers can provide.
Is this really how we want to ration heath care?
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:
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.
“The United States provides health care to all senior citizens although children are the least expensive and most cost-effective group to cover.”
“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.]
”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.
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”.
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”).
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)
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.
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?
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.)
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
American Pain Society
a professional medical organization with some education functions. They do research on sub-topics in pain and also some advocacy.
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.
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.
A previous organization, the National Pain Foundation, is merging with the ACPA.
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.
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:
• Audio/Video Replays
• Chat Transcripts
• Pain Conditions
• Pain Topics
• Q&A About Pain
• Top Ten Tips for Coping
• Webinar/Teleconference Replays
Pain Resource Information
• Financial Information & Assistance
• Finding Care
• 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
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.
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:
Chart from an AFL/CIO publication.
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.