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

In our society, women are generally conditioned to “play nice” and work well with others.  Unfortunately, this can easily translate into failing to be assertive and advocate for ourselves when it is needed.

I recently was asked to do some research about obtaining a second opinion for a friend looking into treatment options.  While I was investigating, I came across a profound website and video called “Give me a Second” which clearly and provocatively illustrates the reluctance of many women to seek additional opinions when faced with a serious medical treatment decision.

According to the website, seven conditions that for which women should absolutely seek a second opinion include:

  1. A diagnosis of cancer, especially breast or gynecological
  2. Heart Condition/recommendation for bypass surgery
  3. Diagnosis of a brain tumor
  4. Unresolved menstrual/gynecological problems
  5. Autoimmune disease, such as lupus or rheumatoid arthritis
  6. Irritable Bowel Syndrome
  7. Varicose Veins

Although these conditions vary in severity, they have a commonality – there are substantial variations in the recommended treatments for each, ranging from the minimally invasive to the more conservative and aggressive.  Each approach has its own risks and benefits which need to be taken into consideration with each individual’s own specific diagnosis and preferences.  There is never a one-size fits all treatment for any medical condition.

Why are people so reluctant to pursue a second opinion? The reasons range from fear of delaying treatment for even a day or a week, to concern of disappointing or angering the initial doctor, to simply being uncomfortable speaking up for ourselves.  Unfortunately, not all doctors respond positively when advised that their patient wants a second opinion on a diagnosis or treatment plan, and not everyone is aware that the option of speaking with another doctor even exists.

But in the case of the conditions listed above, and many others, seeking a second opinion may be a life-saving move.

CancerGuide.org provides a comprehensive summary on seeking and evaluating a second opinion for cancer diagnoses and treatment planning.  You can also look at the fact sheet from the American Society of Clinical Oncology.

Having more than one opinion from specialists in the field can make the patient more confident that the diagnosis and treatment regimen is the correct one for them, creating a more positive and trust-based relationship between the patient and care providers.

Guest editor:  Debora Harvey, Patient Navigator LLC

Please visit our January newsletter.  This month’s topics discuss:

  • the launch of the new Patient Navigator website with additional products, services and discounts for our clients
  • the National Cancer Institute’s reorganization of the system of clinical trial cooperative groups and how that should improve the efficiency of clinical trials in the age of molecular oncology
  • introduction in our Food Science series of the acid-alkaline balance in our food as another way to plan a healthy diet

We welcome your comments and suggestions for future articles!

Back pain seems to hit many of my friends with regularity.  This can be debilitating, undermining the ability to work and interact with families.  Chronic pain often leads to depression.  There are many different causes of lower back pain, each with its own recommended solution.  Surgery is often an option and can help in many cases.  But it’s worth exploring other, less invasive remedies first.

Recently, I was reading an article in the online Natural Health magazine that detailed some alternatives that are available to those looking for a complementary solution to their pain.

The author compiled approaches to back pain from an orthopedic surgeon, a yoga therapist and a chiropractor.

The surgeon diagnosed the most probable cause of the pain as degeneration of discs due to genetics, injury or too much sitting.  The recommended treatment included rest, alternating heat and cold packs and stretching, for acute pain.  For chronic pain, he recommended avoiding repetitive injury, improving core strength, and stretching.  Surgery would be an option for those who are not helped by these methods.

The yoga therapist indicated that “chronic pain sufferers often are frustrated and depressed; they feel betrayed by their bodies.”  She said that yoga helps these feelings because of the emotional component, which helps sufferers rebuild body confidence.  She recommended gentle yoga, with conscious breathing to calm the nervous system, thus reducing pain-causing inflammation in the body.  Core stretching and strengthening poses help to develop the muscles supporting the spine. Similarly, pilates exercises also help to build core strength and prevent injury.  Regular pilates work frequently restores function and helps to manage or eliminate pain.

Yoga therapists and other complementary medicine practitioners can be found at Alternative Health Directory.

The chiropractor said that back pain can be caused by joints around the spine becoming constricted (by long hours of sitting), creating muscle and ligament tightness.  He suggested that a chiropractic adjustment would stretch tight ligaments to improve joint motion and position. He indicated that an adjustment might not be necessary; that chiropractors also use ultrasound, massage, and electrical stimulation (TENS) to help ease back pain.  One to six visits are generally enough for relief.

To learn more, visit the American Chiropractic Association or to find a chiropractor who treats the children and the whole family, visit the International Chiropractic Pediatric Association.

I would have liked to have seen a contribution from an acupuncturist in this article, as I believe that this treatment offers tremendous benefits in certain situations.  Both conventional and complementary treatments have their place for most conditions.

For good medical summaries of lower back pain, visit the National Institute of Health website on back pain or the Spine Health website.  Another site we recommend is Spine Universe which has excellent information on every type of back pain with recommended treatments.

Prevention  is the key to living a pain-free life, so always stretch, stretch, stretch and try to practice yoga or pilates to strengthen your core.

Contributed by Debora Harvey, Patient Navigator LLC

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.

Please review our December newsletter.  The topics are:  Medicare Open Season for Seniors; Holiday Grieving – My Tips for Survival; and Food Science Part 3.  Our “Navigator Notes” monthly newsletter is designed to bring you important health topics.  We welcome your feedback.

The National Association of Healthcare Advocacy Consultants (NAHAC) held its second annual “Vision and Voice” Conference from November 4-6 in Washington, D.C. Over 100 patient navigators and advocates from around the country participated in a variety of plenary sessions and specialized workshops. They networked, learned, shared experiences and gained new skills for their advocacy work. Conference Chairperson Elisabeth Russell, President of Patient Navigator LLC, was delighted with the outcome and proud of the work that NAHAC has accomplished in its 15-months of existence. Next year’s Conference will in Berkeley, California in early November 2011. For more information on the Association, please visit the website at www.nahac.com

The October edition of Navigator Notes contains articles on:  a new appeal option for insurance denials;  cancer cell autophagy (self-cannibalism) and Part 2 of our Food Science series.   The newsletter is brought to you as part of Patient Navigator’s education initiative.

Check out my @constantcontact newsletter.

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.

A recent survey revealed that 91 percent of physicians surveyed practice defensive medicine – they regularly order more tests and perform more procedures than are medically necessary in order to protect themselves from the possibility of being sued for medical malpractice.

This survey, by a team of researchers from Mount Sinai School of Medicine, confirms that the fear of being sued is very real and pervasive throughout the entire spectrum of medical practice.

In addition, those surveyed responded that the “overwhelming majority of physicians support tort reform to decrease malpractice lawsuits and that unnecessary testing, a contributor to rising healthcare costs, will not decrease without it.”

Defensive medicine is expensive, inconvenient to both doctor and patient, compromises the relationship between provider and patient, and has no basis in evidence-based medical practice.

Unfortunately, the practice of defensive medicine decreases patient access to health care, and increases costs of healthcare for everyone.  Some patients are left in the lurch as physicians avoid the sickest patients, or those requiring higher-risk procedures, in order to reduce their exposure to malpractice suits.

A 2008 study by the Massachusetts Medical Society found that 83% of its physicians practiced defensive medicine at a cost of more than $1.4 billion annually in that state alone.

To me, $1.4 billion in one state translates at a conservative estimate to at least $30 billion annually throughout the country.

I find the dollar cost of the practice of defensive medicine disturbing.  I find the cost of the doctor-patient relationship, in which the physician views every patient as a potential lawsuit, rather than a person in need of healing, frightening and discouraging.

More medicine is not better medicine.  Evidence-based, patient-centered medicine is better medicine.

Submitted by guest editor Debora Harvey