Patient Navigator

Patient and Medical Advocates to Guide Your Journey Through Illness

I was amazed at the insight and the evocative words in this poem, conveying exactly the scary onslaught and lassitude of depression.

It was written by a ten year old boy.

Depression feels like a fog

of invincible sadness has

been thrown out onto the world.

It smells like wet rotten eggs

that have been left out for the rats.

It’s blue like the feeling at a funeral.

It looks like a dark room with nothing

in it.   Depression kills like an angry

tiger in a jungle of sadness.  It sounds

like a roar of frustration boiling down

deep inside.   Depression crawls like a

baby that has given up the will to walk.

Depression is slow and scaly like an

old snake dying out.

Depression hurts everyone.

How sad that this boy could have such a significant insight into the world of the depressed mind at such a young and supposedly innocent age.   Whether he is experiencing depression himself, or seeing a family member struggle, it is hurting him, deeply.

Our words and actions, especially those unspoken or left undone, are absorbed by children.  Children observe and imitate from the time they are born.  It is their lifeline, their whole existence.  They have to understand the adults around them in order to survive.

With depression and anxiety so prevalent in our society, it is not surprising that a great number of young people report these  feelings.  Kidshealth.org has understandable explanations and examples of what childhood depression is and how it affects the lives of young people.

Although depression is a mental illness that is well treated with medication and/or cognitive therapy, there is still a stigma associated with depression in some circles.   Mental Health America offers a quick screening tool, but there are others that help people understand the symptoms and treatment options.

Where to find help and information:

National Institute of Mental Health

National Strategy for Suicide Prevention

National Mental Health Association

Depression and Bipolar Support Alliance

If depression is affecting your life, the life of a child you know, or someone you love, help is available.  You can reach out and make a difference.

Submitted by guest editor Debora Harvey, Patient Navigator LLC

 

 

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

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 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.

Yesterday, I drove onto the freeway and headed to my first client appointment of the day.  As the line of cars ahead of me snaked down the on-ramp, I wondered why the normally free-flowing ramp was stuck.  I felt impatient and irritated with whatever was causing the problem.

A small silver Honda was trundling along at 40 mph, in traffic that was easily surging past it at 60 to 70 mph, even through a construction zone.  As I passed the car, I saw the driver – an elderly man, easily in his 80s, with white hair and beard, wearing a hat and clenching the steering wheel tightly in both hands.

My irritation immediately turned to sympathy.  I can only imagine the fear and anxiety he felt driving on a fast-moving highway, in rush-hour, through a construction zone, dealing with drivers who think they are the most important ones on the road.  That is a challenge to anyone.  For someone whose reflexes and processing time have slowed, it is an enormous challenge.

Many families have to face the issue of getting Mom or Dad, Grandma or Grandpa to stop driving when is it no longer safe for them to do so.  It is rarely a straightforward decision.  AARP has developed a Driver Safety Program that helps families evaluate a senior’s driving skills, notice key clues that there might be problems, and initiate a discussion with the driver.

The American Automobile Association also has a comprehensive site devoted to skills assessment, planning and communication.

Automedia has developed an online test for physical and mental driving capabilities.

Some states require drivers over a certain age to renew their licenses in person, and to be tested more regularly than a younger driver.  While this is often viewed as a burden by older drivers, it also helps to ensure that the older drivers still on the road do possess good driving skills.

One of the central aspects of American culture is independence.  When a person can no longer drive safely, he or she loses a huge degree of that independence.  Proper preparation and discussion can help ease the process.

Guest Editor Debora Harvey, Patient Navigator

This is the first in a series of Mental Health topics that will be presented by guest editor Jane Smith-Decker, our mental health navigator.

We’ve all seen the endless television commercials in which sad and dejected people suddenly start looking happy after taking the particular pill being advertised.  However, it’s just not that simple.  Depression or clinical depression is a mood disorder that comes in different forms.  Depression affects 1 out of 5 women and 1 out of 10 men.   It is more than just feeling sad or getting the “blues.” Depression lasts for two weeks or more with many symptoms.

Major Depression Disorder has a variety of symptoms that interfere with a person’s ability to work, sleep, study, eat, and enjoy activities they previously enjoyed.  An episode of this depression can occur only once in a lifetime, but often usually recurs throughout life.

Dysthymia is a long term but less severe type of depression. The symptoms may not disable a person but can prevent them from functioning normally or feeling well.

Psychotic Depression occurs when a severe depressive illness also has some kind of psychosis. This psychosis can include a break with reality, hallucinations, or delusions.

Postpartum Depression is common in new mothers when they develop a major depressive episode within one month after giving birth.  It is estimated that 10 to 15% of women experience postpartum depression, as do some new fathers.  It is a serious illness that needs fast and effective treatment.

Seasonal Affective Disorder is the onset of a depressive episode during the winter months caused by lack of natural sunshine. Spring and summer usually alleviate the symptoms as well as light therapy.

Symptoms of depression disorder include persistent sad, anxious, or empty mood, sleeping too much or too little, and changes in appetite and weight.  In addition, there is loss of pleasure and interest in once enjoyable activities, including sex, persistent physical symptoms, restlessness, and irritability.  Difficulty concentrating, remembering, or making decisions, fatigue, loss of energy, feelings of guilt, hopelessness, or worthlessness and thoughts of suicide or death may also be present.

Many things contribute to depression.  Biological reasons seem to be one of the major causes. Depression can be caused by too little or too much of certain brain chemicals called neurotransmitters, such as Serotonin and Norepinephrine. Changes in these chemicals may cause or contribute to a major depressive episode.

Cognitive functioning may also contribute to depression.  Negative thinking patterns and low self-esteem more than likely lead to depression. Gender may play a role as well, with women experiencing a rate of depression nearly twice as that of men.  Though reasons are unclear, depression may be caused by hormonal changes and stress in women.

Depression may also be caused by side effects from medication or conditions of other illnesses such as heart disease or cancer.  Genetics may also play a part in depression with a family history of mental illness as well as situational causes such as divorce, financial problems, and death of a loved one.  Drugs and alcohol can also cause depression.

Depression, even the most severe cases, is highly treatable. First, medications or medical conditions should be ruled out.  Once that is done, a psychological evaluation can pinpoint the disorder.

Medication is often used in the treatment of depression. SSRIs (selective serotonin reuptake inhibitors) such as Celexa, Lexapro, and Zoloft are very effective in treating depression.  SNRIs (serotonin and norepinephrine reuptake inhibitors) such as Effexor or Cymbalta are similar to SSRIs and very helpful in treatment.  These medications often take three to four weeks to begin working and are to be used regularly for the therapeutic effects to occur.  For continued control of depression, medication must be used even if one is feeling better.  There may be side effects with some medications that can be managed with other medication or by trying a concurrent, antidepressant.

Therapy can also be a good treatment, along with medication, for depression. Talk therapy with a psychiatrist, psychologist, or therapist can help with understanding depression and its effects. It can work toward positive changes in outlook and practical changes to reduce stress. In, addition, group therapy may also work well. Others with depression can share their experiences, challenges, and ways of coping. It can be a strong base of support for one suffering with depression, with encouraging and positive experiences.

Depression is a serious mental illness that can be controlled with a doctor’s care and medication. Depression does not have to rule your life. With information and care, depression can be alleviated enough to help one function well.    If you think you may be depressed, please see a medicalprofessional.

For more information, please visit the National Institute of Mental Health athttp://www.nimh.nih.gov/index.shtml

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

A cancer diagnosis is an emotional earthquake, unleashing fear, anger, sadness, confusion and uncertainty.  Your life has been turned upside-down, your future is at risk and at stake and you feel betrayed by your body.  Your colleagues, family and friends are shocked and afraid and you must begin to deal with the extensive medical, financial and emotional hurdles involved with a cancer diagnosis. 

It comes as no surprise that those diagnosed with cancer experience a roller coaster of feelings and emotions at the outset.  However, if feelings of anger, sadness or emptiness persist for an extended period of time or if you are unable to get through your day, it may be beneficial to seek professional help. 

Depression is a condition that affects many cancer patients at one point or another.  In fact, up to 1 in 4 people with cancer do have clinical depression. Clinical depression causes great distress, impairs functioning, and may even make the person with cancer less able to follow their cancer treatment plan. The good news is that clinical depression can be treated.

If you are experiencing depression, speak to your doctor or a trusted friend.  He or she can direct you toward trained mental health practitioners who will help you through these adjustments and treat your condition.  You may also benefit from a support group to gain knowledge and share experiences with others in a similar situation.  For many people, it helps to know you are not alone and to create a network of support and understanding.  This may help you put your cancer in a new perspective and allow you to focus on healing and recovery.  Check with your hospital and community to find a local support group.  Many national advocacy groups sponsor local support groups.

For more information, please visit the American Cancer Society’s website for their definition of depression and suggestions for coping:  http://tinyurl.com/CancerDepression