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Patient Bill of Rights

  • The right to have your report of pain taken seriously and to be treated with dignity and respect by doctors, nurses, pharmacists and other healthcare professionals.
  • The right to have your pain thoroughly assessed and promptly treated.
  • The right to be informed by your doctor about what may be causing your pain, possible treatments, and the benefits, risks and costs of each.
  • The right to participate actively in decisions about how to manage your pain.
  • The right to have your pain reassessed regularly and your treatment adjusted if your pain has not been eased.
  • The right to be referred to a pain specialist if your pain persists.
  • The right to get clear and prompt answers to your questions, take time to make decisions, and refuse a particular type of treatment if you choose.
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Pain 101

For those of us who are committed to improving the care of those affected by pain, I think, it is most notable start off this article by sharing a quote from our APF Board Chair, Dr. Scott Fishman. He stated that, “Treating pain in not just a compassionate exercise for quality of life…it is essential for life, itself.” It reminds me and, I hope, others that striving to reduce someone’s pain helps others get back to a life worth living again.

 

Before we talk about pain and its treatment, it’s important to understand how pain is defined by the pain specialty along with some history of those definitions. There are two most commonly accepted pain definitions in the field of pain.

 

The standard scientific definition of pain was first described in 1979 by the International Association of the Study of Pain (IASP). This definition explains that pain is an unpleasant sensation, but also carries an emotional toll on the individual—the whole person is affected. It also describes that pain can be caused by a range of sources: real, potential or defined by the nature of how the damage is described. This definition recognizes that not all pain can be clearly understood, at least not then and even not at the present time—science/research needs to catch up.

 

The most popular definition of pain is one that is near and dear to my heart. I confess that I am biased as this definition was first published in 1968 by a another nurse, Margo McCaffery, RN, PhD. Margo simply stated that “Pain is whatever the experiencing person says it is, existing whenever the person say it does”.

 

This important statement critically influenced the field of pain management and emphasized the importance of asking for the self-report about pain. She set the stage for the importance of performing a pain assessment. Afterall, how can someone help treat pain, if they do not understand how it affects the person in front of them?

 

So, what is pain? What do we know about pain? We know that it is complex as it involves the nervous system from the smallest nerve endings to the spinal cord and through many areas of the brain for response and reaction.

We know that pain is subjective--meaning at the present time we cannot measure it like taking a blood pressure or temperature. Getting a measurement of pain requires each individual to self-report (whenever possible).

 

We know that pain is unique to each person. For example everyone in this chat room could feel the same painful stimulus in very different ways.  We know that pain is a common phenomena; who gets through this life without some type of pain experience?? We also know that there are pain conditions or experiences that remain mysterious; they continue to baffle many of the top experts in the field.

 

So, pain is alive and well in our nation and our world. In fact, pain affects more Americans than Diabetes, Heart Disease and Cancer combined. Over one quarter of our population have pain of some kind. That is expected to grow as life expectancy rises due to the “miracles” of modern medicine. Would you be surprised to hear that the most common pain problems are: low back pain, neck & shoulder pain, headache and arthritis??

 

Neuropathic pain (nerve pain disorders) are expected to rise as many live longer with diabetes, circulation problems, shingles---this does not account for what we will see in droves as our injured soldiers return from our current wars. These soldiers are surviving wounds that prevented other war veterans from coming home alive.

 

Pain does not discriminate. It affects people of all races, cultural background and any economic status, gender and at all stages of life! In the U.S.,  pain care is Worse  for minorities, our elderly, children & women, the institutionalized (nursing homes, prisons), the poor and the uninsured, people who speak English as their second language and for the mentally ill it is not even on the radar screen.



The good news is: most pain can be relieved or eased with proper pain management. Pain relief can:

 

  • Decrease stress
  • Allow for restful, restorative sleep
  • Improve quality of life
  • Promote healing (may be very different than curing).

 

 

The tragedy is that even with the current knowledge we have “most pain is untreated, under-treated, or improperly treated” a situation that has not changed much since Dr. James Campbell made this observation in 1997. There are prevailing myths and barriers to effective pain management.  They begin with these:

 

  • Failure of doctors, nurses and pharmacists to assess pain

 

    • They continue to be under-educated
    • They continue to under-value
  • Public Stigma is prevalent:

 

    • Fear and embarrassment impedes the voice of those affected by pain
      • Many fail to tell even those most close to them
      • If this is so, are they willing and able to talk about pain to healthcare providers
      • What is being or not being reported to those providers?

 

  • Fear of opioids is fueled by mis-statements and zealotry which obstructs balance in practice and access for those who may benefit.

There are other myths to be aware of:

Myth: The best judge of pain is the physician or nurse.

  • Fact: Studies have shown that there is little correlation between what a physician or nurse might “guess” about someone’s pain. The person with pain is the authority on the existence and severity of his/her pain. The self-report is most reliable indicator.

 

Myth: The same type of pain affects different people in the same way.

  • Fact: Many studies failed to support that similar pain stimuli will produce same pain level intensity. There is individual difference when sensation is first recognized as painful (pain threshold).  There is a difference with pain intensity that each person willing to accept (pain tolerance). Identical injuries can be described differently by sensation and intensity.

 

Myth: The person who reports pain early to their provider will be provided pain relief quickly.

  • Fact: Stoic (quiet, reserved, introverted) personality is highly valued and favored by many societies, including ours.
  • Research supports clinician bias against pain patients who are labeled as demanding, emotional, angry. Red flags are raised when someone with pain is “too well-informed” about their pain & its management. (This is a treasured value with those who have other conditions such as cardiac disease, diabetes and cancer).
  • There are imposing values of providers where they may label people with pain using terms such as “low pain tolerance” or “drug-seeking”; the withholding analgesia without cause may be a selected intervention with some reports. Note: This is not considered appropriate or ethical professional behavior.

 

Myth: All nurses know how to relieve pain.

  • Fact: Studies have shown that even with adequate physician orders, pain can be undertreated by nurses because:

 

    • They tend to use the lowest dose ordered rather than dose needed to reduce the pain.
    • PRN (as needed or as requested) will be encouraged even though this method is less effective than ATC (around the clock) especially the initial 48 hours of acute post-operative or post-injury pain.
    • Physician orders are not questioned when pain is not relieved which causes the person in pain to wait in pain until “it is time for the next dose”.

Myth: Most people with pain become addicted to their pain medicine.

  • Fact: There is a fear of addiction, substance abuse and diversion from healthcare professionals and the public.  Providers are torn between protecting their patient, protecting their practice and protecting the public welfare. The public fears that simply taking an opioid will lead to addiction, which is false. There is confusion about the difference in and implications of tolerance, physical dependence and addiction.

 

    • The risk for addiction in our nation has remains stable at 7-10% and studies show it is no higher in those who live with pain.  The risk of addiction increases for an individual when there is a personal/family history of substance abuse or mental illness and a rare problem with the elderly. (See Q&A about Addiction: http://www.painfoundation.org/page.asp?file=QandA/Addiction.htm).

Overall, the most common reason for the under-treatment of pain is the simply the failure to properly assess for pain. There are many tools that can be used that range from different age groups, abilities to communicate and languages.

What you can do to help improve your pain treatment is to record your pain and its impact in your life. One example to consider is using is our Pain Notebook, newly revised and posted on our website. To help your provider learn how to ask the right questions when assessing for chronic pain there is the companion publication, Target Chronic Pain Card. To find these on our website, see: http://www.painfoundation.org/page.asp?file=Publications/Target.htm.

 

There are basic principles of Adequate Pain Management that were first published by the American Pain Society (APS) and have remained constant and reliable over the years.  Hopefully your provider follows these principles. Simply, they are:

  •  The person with pain is the expert in their pain
  • A systematic & ongoing pain assessment is key to an effective pain treatment plan
  • A pain treatment plan should combine drug therapy with non-drug to maximize effectiveness
  • When medications are selected, the provider should adjust drug therapy to the individual’s response
  • The performance of an ongoing evaluation of the pain management plan is the only way to measure success
  • It is essential to communicate the treatment plan to others (including the person with pain, designated loved ones, caregivers, other healthcare professionals) who are part of the pain team
  • Identify & deal with barriers as they arise.

 

Pain Treatment Requires Action! It begins with screening, recognition & reporting. The most effective treatment plans are those that are “multi-modality”, meaning a variety of options. The plan should include options from the following categories:

  • Medication Therapy
  • Rehabilitative Methods
  • Psychosocial Support
  • Non-Drug Options (CAM)
  • Interventional Techniques: Injections, Infusions, Implantables and other “invasive” options.

 

As you and your pain care team maps your treatment plan it may to remember these bullet points:

  • Pain is complex and unique to every individual
  • There are aspects that the provider should consider when a treatment plan is developed:

 

    • The type of pain you have (acute, chronic, inflammatory, neuropathic)
    • The intensity of pain (at rest, with activity, the best, the worse, the average)
    • Your physical condition, coping ability and private challenges
    • Your lifestyle and preferences for treatment
    • How to balance the risks with benefits of the preferred treatment choices  
  • The overarching goals of pain treatment are:

 

    • Lessen your pain severity
    • Improve your ability to function in your everyday life
    • Enhance your quality of life

What do you need to know when thinking about your treatment options? Different therapies might not work for everyone. It takes flexibility, time and persistence to find the right combination that works for each person, particularly if you have had pain for a long time.  When I teach nurses, I tell them this: “Get the ingredients you need and help build the right recipe with your patient. It is a team effort.”

There are factors that can interfere with pain therapies, like:

  • How different drugs interact with each other
  • How foods might affect how a drug works
  • How different treatments can either complement each other or cause harm
  • How your general health and personal habits can play a role in pain treatment.

 

For more information refer to our publication, Treatment Options:  A Guide for People Living in Pain, 2006. This is up for revision for 2008.

The bottom line: Pain Management is an Ongoing Process! It is not just a one-time concern.  Finding the right combination of therapies may take time, but often makes the critical difference in your care.” Most of all, “It’s Not Just In Your Head!”