Although I had concentrated on legal issues relating to pain in terminal illness, I had never even heard of CRPS until I got a call from a young mother in California with the crippling syndrome. She had gone from being an athletic, employed, confident woman to one who could not care for her two-year old, couldn’t work, and feared her husband was getting fed up with her inabilities and constant complaints. She was stitched to life by her innate determination, her love for her daughter and not much else. The tragic aspect of her story was that she knew, from experience, that she could get significant pain relief from a combination of fentynl patches and breakthrough medication.
Her HMO balked at the cost of fentynl and suggested that she was not really hurting. A physician at the clinic told her she was drug seeking. A clinic pharmacist yelled at her when she came to pick up medications and told her not to come back for “her drugs.” It took an HMO appeal, a complaint to the state insurance commissioner, and filing a complaint in a local court to get her relief. A little over a year later, a re-evaluation started it all over again.
In advising her, I learned that chronic pain, just like end-of-life pain, could be safely treated with opioids, and that the barriers for adequate pain management were much higher for those with chronic pain than those with terminal illnesses. I also had begun to understand that living with severe chronic pain is
as bad as dying with it-and lasts longer.
Advocacy at the systemic level may eventually make multidisciplinary pain management a reality at all disease and income levels. In the meantime, many chronic pain sufferers will continue to fight it out one physician and one appointment at a time-not always successfully. As with much of medical care, self-advocacy
is absolutely necessary. You need to know your rights.
Getting Off on the Right Foot
CRPS patients with untreated pain often feel that the physicians they consult are unfeeling, paternalistic, judgmental gate-keepers. Although this image may fit some, it is more useful to see the prescriber in a different light and do your best to respond to his limitations, which may include:
- lingering doubts about whether CRPS is a real syndrome
- poor training in pain management, or training against using opioids for chronic pain because, despite reassuring words, his state medical board takes a hard line on physicians who prescribe them.
- feedback from a pharmacist that the physician is prescribing too much pain medicine
- intense pressure from your HMO to hold costs down by not prescribing the more expensive formulations
- bad experiences with other opioid patients, making him feel that chronic pain makes for needy, time-consuming and difficult patients
- the knowledge that honest physicians have unfairly been indicted for their prescribing habits.
For all these reasons, physicians are often fearful and wary of chronic pain patients and they cannot help but wonder which one will get him in trouble. The physician who simply refuses to use opioids for anything but acute pain, and then only for brief periods, is not going to help you, even though the AMA ethical standards require member physicians to provide patients with “adequate pain control, respect for patient autonomy, and good communication.1” However, he should be willing to refer you to someone who will provide effective pain care. In Florida, California and a few other states, physicians are legally required either to treat pain or refer. In other states, the obligation is usually defined in the medical board regulations. Certain specialty boards have adopted standards or guidelines on the use of opioids to treat chronic pain.
If you would like to provide your physician with state laws and guidelines regarding opioid treatment, they are available online at http://www.medsch.wisc.edu/painpolicy/matrix.htm
Prescribers who use opioids for pain management must feel secure about treating you and your pain and must overcome his comfort level limitation on dosage. Therefore, put aside your anger and frustration to present yourself as effectively as possible. Let the physician know that you are responsible and willing to cooperate to protect you both. Bring all the records you have to the first visit and let him know if opioids have helped you in the past. Be aware, however, that physicians are conditioned to see this as demanding a particular opioid; be clear that you are only informing.
Good physicians will have some practice management tools in place, so don’t take it personally if you are asked to sign a pain “contract” and to submit to blood or
urine monitoring. Contracts are actually a form of detailed and interactive informed consent. Good physicians will regard some contract violations as reason to evaluate and discuss what certain actions mean and will understand that actions that look like abuse can also be clear signals of under-treated pain, dysfunctional living arrangements, or manifestations of depression or anxiety.
Let the physician know if you need to “violate” one of the contract rules-such as requesting early refills so that you can go out of town or increase the dose in a time of particularly serious pain. However, you still have pain, call the physician before you increase the dose and ask for an appointment to talk about titration. If you can’t afford an interim visit, try to speak with him by telephone to explain how you are feeling, or have a friend or relative call him to express concerns.
Finally, do not be shocked or offended if he asks you to have a psychiatric consultation. This need not mean that he thinks your pain is “all in your head”. Depression and anxiety are almost synonymous with chronic pain, as is social isolation. Many studies show that a psychological evaluation and even ongoing psychological care can substantially improve pain management, as can other modalities, such as neurocognitive feedback. And, of course, it gives your physician some “cover” to have another professional involved. If money is an issue, let him know.
It is a good idea to bring a relative or friend who will talk to your physician about your suffering and the functional difference that pain medicine makes because prescribers are reassured when a patient using opioids has a visible support structure. It is also less likely that the physician will be rude or patronizing in front of a supportive friend or relative.
Some pain management physicians who are anesthesiologists by training have a firm bias toward invasive procedures over medical management, so they may suggest that you repeat sympathetic blocks or expensive tests even if a previous physician has already tried them. You have no obligation to go along, particularly
if your records reflect a history of procedures. The physician is obliged to seek your informed consent, which requires a discussion of risks and alternatives. Although you do not have to give it, the unfortunate upshot may be that he declines to treat you further.
You and Your Physician: What are Your Rights?
Reality dictates that some physicians, even in the face of clear pain, will not be willing to prescribe opioids. More commonly, they are willing to prescribe low doses but have a personal comfort level limit that may or may not be adequate for you. Moreover, if you push him to titrate doses above that comfort level, he may decide that you are a drug seeker. This serious ethical problem-the physician putting his perceived personal safety before his patient-is a deplorable situation
that can lead to abandonment.
A physician can abandon a patient whom he views as drug seeking or who has in some way “violated” the informed consent agreement. Although state laws and medical ethical rules do not allow abrupt termination of a physician-patient relationship, a prescriber does not have to keep you in his practice. If you are stable and able to find another physician, he can terminate you if he provides a brief written explanation of his reasons. An oral message is insufficient. The physician
must also agree to continue your care for at least 30 days and he should also provide a referral.
However, if you are at a critical or important point in your treatment, abandonment by notice and 30-day care is not permissible under common law. This restriction should apply to a patient taking opioids for pain because the consequences of withdrawal for a person who has a chronic illness could be significant.
Additionally an un-medicated patient may face a return of the pain that had been mediated by the opioids; he will almost certainly experience anxiety and distress. In short, a period without continuity of care could constitute a medical emergency. It seems logical that refusal to treat a patient until the patient has obtained another physician (or perhaps until it becomes clear that the patient is not making a serious effort to transfer care) should constitute abandonment.
What Can You Do?
Try Informal resolution. Deal with the termination immediately. If the physician is in a clinic setting, ask the head of the clinic if another physician there will take over your care. Speak to other health care professionals who know you well enough to be comfortable calling to explain that you are genuinely in pain and are a reliable, conscientious person.
Ask for a meaningful referral. Tell your prescriber you will need his help in finding another physician and you have a right to his assistance. Get your records and review them carefully. Federal privacy law (HIPAA) requires your physician to provide your records promptly and to charge you no more than his actual costs of copying. It also allows you to have your records corrected if they contain errors. Review them for accuracy and look closely at what they say about the reason for termination. Phrases like “drug seeking” or “possibility of abuse” will hurt your efforts to find another physician. If he has used these phrases, write him a letter, preferably through an attorney, and use the words “abandonment,” defamation” and “emotional distress” if the attorney confirms that they are appropriately used in your state.
File a Complaint with the State Medical Board. Every state has a medical board that reviews all complaints and takes action when necessary. Only two state boards have disciplined any prescriber for under treating pain, so it is not possible to see this yet as a meaningful remedy. However, as more complaints are made and individual physicians show a pattern of patient abandonment, state boards are more likely to act.
State board complaints are not complicated. You do not need an attorney, but if you have one, take advantage of his advice. The forms themselves are simple and straightforward and are available on your state’s website. You can also order them by phone. Make your complaint more effective by writing a clear statement of what happened to you and any difficulties that you are having in finding another physician. Avoid a long, rambling statement. It may help if you number each paragraph and tell your story chronologically. If possible, have someone else read it to make sure it seems clear.
Do not feel limited by a form that does not allow much space for your comments.
Explain the emotional and physical impact of the termination. If you think your physician terminated you unfairly, state why. Make it clear if he was verbally abusive! Attach brief statements by anyone who has observed the impact that the termination has had on you and any other documents that may help the board understand that you are a legitimate pain patient with a serious medical condition.
If you want to follow up with the board, talk with the clerk to make sure it was put on the docket. Find out who is responsible for the investigation and ask to speak with him. Answer any questions and ask to be kept informed of case progress.
Consult an Attorney About a Formal Action
Abandonment is a tort (legal wrong) that may give you cause for a legal action against your physician. To prove abandonment you usually have to show (a) a physician-patient relationship; (b) that was terminated or neglected by the physician and (c) that caused you harm. An attorney can advise you about
your state’s requirements. Additionally, there is a tort called “infliction of severe emotional distress,” which requires (a) an action taken by the defendant (b) which was reasonably foreseeable to cause severe distress; and (c) that it did in fact cause severe emotional distress. Some states require a physical injury, but there is some precedent that recognizes pain as such. A growing body of medical evidence that untreated pain has serious physical consequences would
substantiate this view. If the defendant physician knew and intended to cause the emotional harm, a more serious tort is invoked. The requirements of these torts are often complicated and you should discuss your state’s precedents with your attorney.
Do not take a suit lightly and do not expect a windfall. Litigation is very hard on anyone with a chronic illness and even more so with RSD because of the stress involved. It prevents you from moving on. If you cannot afford to pay an attorney, you will have to convince one that the case is worth taking on a contingency basis; experience has proven this difficult. Most attorneys know very little about opioids and even less about pain management. You will need to educate your attorney so that he can evaluate your case intelligently.
You can find additional information on legal assistance in the directory, In Pain and Agonizing Over the Bills. For a print
copy, contact the RSDSA office at (877) 662-7737.
1. AMA Ethical Statement 2.1, made effective for chronic
pain by the Council on Ethical and Judicial Affairs in 2002.