Patient Navigator

Patient and Medical Advocates to Guide Your Journey Through Illness

In this blog, we have written often about pain management because so many patients come to us desperate for help.  Pain seems to be one of the most misunderstood aspects of patient care.  A recent New York Times article sparked a lively debate among fellow advocates about the failure of most doctors to understand pain and to treat it appropriately.   I invited Ken Schueler to share his thoughts as guest editor today.

“I had the privilege of participating some years ago in Dr. Russell Portenoy’s successful initiatives in making “pain” the fifth vital sign.  Dr. Portenoy is considered the father of the Pain Management movement in the U.S.  He is at Beth Israel Hospital in New York.

There are multiple problems with regard to pain management in the United States.  First, we have a puritanical history that has contempt for suffering which can’t be measured scientifically or associated with an organic disease (e.g.,  Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome).

In other words, with the exception of some investigational functional MRI’s, doctors can’t verify a patient’s subjective report of pain.  So they begin by under-dosing a patient’s baseline pain, allowing continual breakthrough pain. Gradually they will dose to effect unless they dismiss the patient and refer them to the psychiatric service believing the patient is malingering or that “it’s all in your head.”

Second, for many years, pain management physicians had no Board Certification; they were composed of neurologists and anesthesiologists.  Now, there is the American Board of Pain Medicine which is fostering education among all physicians.

Third, there is an enormous misunderstanding and lack of knowledge about addiction and three characteristics of pain management:

1) Dependency – if you suddenly stop taking an opioid you’ll go into withdrawal.   Note:  one wouldn’t say that a diabetic is addicted to insulin,  one would say a diabetic is dependent on insulin.  Therefore,  dependency is NOT addiction;

2) Tolerance – needing a higher dose to achieve the same effect, as often happens in advanced cancer:  that is NOT addiction;

3) Addiction is properly defined as “drug craving behavior where a patient is obsessively seeking to score opioid drugs through doctor shopping (paying cash) and even forging prescriptions.”

For many years I was on a list service with Dr. Russell Portenoy, and the stories of suicides by pain patients unable to receive adequate treatment were/are heart-breaking.   The Drug Enforcement Agency’s witch hunt tactics contributed to these suicides.  There is an irony that the most widely used addictive substance in the U.S., tobacco, is not even FDA regulated.

Many patients are not sufficiently educated to know that once there is breakthrough of their baseline pain(managed with long-acting opioids), it make take considerable time to get the plasma concentration high enough with a short acting opioid to get the pain under control. Often, good pain management Nurse Practitioners are the best educators for pain patients.

Chronic pain requiring an opioid cannot be managed solely with acupuncture, but we know from research that acupuncture stimulates the body’s own endogenous opioid system, such that it may be possible to reduce the dose levels of opioids. One problem here is that insurance companies limit the number of acupuncture sessions, just as they do with physical therapy sessions. Fortunately, a number of compassionate acupuncturists have lowered their prices for pain patients.

I’ve often said that if all medical services were run like hospice we would have a much more humane health care system, notwithstanding the abhorrent insurance system we have. You never see the DEA harass a hospice physician over their opioid prescriptions because admission to hospice requires the primary physician’s certification that the patient has less than six months to live.

Many years ago I did a study of “physicians who became patients.”  Several observations:  if the physicians experienced pain they become much more sensitive to their patient’s pleas for better pain management.  Second, if they had a serious illness or surgery, their colleagues were less likely to refer new patients to them, in other words, once you’re seriously ill, you diminish in value and the institutionalized impact of this on patients is seen when a doctor making rounds with residents says, “that’s the pancreatic”- NOT SEEING THE WHOLE PERSON.

For other posts on pain, please visit:

Understanding Palliative Care

The Face of Pain

Back Pain Help Comes in Many Forms

Guest Editor:  Ken Schueler

Many people experience depression during the holiday season. This is not surprising given that we are bombarded with loud Christmas music wherever we go, incessant advertising and a non-stop drumbeat to shop, buy, spend and create the perfect Hallmark holiday. It is hard not to feel stressed out if you then add the pressure of entertaining, houseguests and a long list of expectations.

Now imagine trying to face all this when you are grieving the loss of a loved one.

It is very hard.  It is painful.  It is unbearably sad.

I lost my mother very suddenly and unexpectedly in May 1990, when she was 63 and I was 31.  I made the decision to skip Christmas entirely that year – no tree, no gifts, no decorations.  I simply could not bear it.  Fortunately, my boyfriend (now husband) understood and supported me, and there were no children to worry about back then. It was the best I could do.

The pressure to go along with the holidays is intense.  Here are my own tips on how to get through them if you are grieving.

1.  Don’t let anyone pressure you or try to tell you what will make you feel better.  Only you know what helps.

2.  Remember your loved one in whatever way seems right – a walk in the woods, a prayer service, watching their favorite movie, setting a place at your table.  You don’t need anyone’s permission or concurrence.

3.  Don’t be afraid to tell people that it really is not a Merry Christmas or Happy Holiday for you.  Let your colleagues at work know that the season is hard for you and ask them to understand if you are distant.

4.  Learn to say no.

5.  Give yourself permission to mourn.  It is normal and necessary.  And then tell yourself gently, over and over, that you will not always feel this way.  And, in time, you won’t.

I’ve learned a great deal over the years about loss and grief.  I’ve learned to grow from each loss in my life, but it has taken a lot of work and faith.  If you are grieving this holiday season, you are not alone.  But please know and believe, with all your heart, that you will not always feel the way you do now.  Time does heal.  Things will get better.

For more information on grief and the holidays, I suggest:

Therese A. Rando, PhD.  Grieving:  How to Go on Living When Someone You Love Dies. (Note:  This book saved me as I grieved the loss of my mother).

Elaine Tiller, M.Div.  When Grief Comes Home for the Holidays, How do you Manage?

Capital Hospice.  Good Mourning: A Resource for Healing.

The September edition of Navigator News includes articles on:  Understanding Palliative Care; The Fine Print of your Insurance Policy; and Food Science Part 1.   We welcome your feedback!

http://myemail.constantcontact.com/Navigator-Newsletter—September-Edition.html?soid=1103192011442&aid=C2KCCMiqSHU&share=fblike.

Lines of pain etched into her face.  Eyes too bright, revealing the agony inside.   Jaw tight, skin stretched taut.  I never really thought about the descriptions of people in pain that I have read in newspaper stories, magazine articles, online sites, novels and non-fiction books, other than to appreciate the evocative images.  However, it has struck me, that not only are those phrases highly accurate, but they only reveal a small piece of what a person shows externally when they are living with chronic pain.

There are many physical conditions that result in chronic, intense pain.  People with these conditions have to manage to live and try to function in varying degrees of agony, sometimes 24 hours a day, 7 days a week.  This is an entirely different situation than the pain that the majority of the population may encounter, say, from a broken bone, childbirth, or dental work.

To add insult to injury, many people suffering from intense chronic pain are told that it is “all in their head” and that they should see a psychologist.  Or they are referred to a pain clinic, whose doctors are more interested in administering the latest drug of the month, likely not covered by insurance, than in listening to the patient and understanding the nature of his or her specific condition.

Chronic pain itself, whatever the underlying cause, is a killer.  The effect of ongoing intense pain on the mind and body actually does result in an earlier death.   http://updates.pain-topics.org/2010/04/severe-chronic-pain-is-killer-study.html

This evidence shows that effective treatment of ongoing severe pain is essential for any sort of positive quality of life.

Thankfully, we at Patient Navigator have unearthed several palliative care physicians who are not only invested in alleviating the patients’ pain, but actually listen to the patient, working with them to improve their quality of life, while coordinating care with other members of the medical care team to treat the underlying cause.  I have seen patients weep in gratitude that a medical professional finally takes them seriously.  I have seen their energy levels increase, and their lives turn around, when they finally find the right balance of medications for pain management.

I have seen their eyes turn bright with smiles, without the pain shadowing behind.

For more information on managing chronic pain, see:

Pain Topics:  http://pain-topics.org/

American Chronic Pain Association: www.theacpa.org

For more information on Palliative care:  http://www.getpalliativecare.org/ and http://www.nlm.nih.gov/medlineplus/palliativecare.html on Medline.

Submitted by Patient Navigator Debora Harvey