Your Pain, Your Rights: Dealing with Your Physician and
By Mary Baluss, Esq.
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
- 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
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 undertreated
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
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
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
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 Out of Work, Can't Pay 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.
Mary Baluss, Esq.