Unfortunately, the vendors of these policies use almost every weapon in their arsenal to avoid paying benefits.  In the past year, I have been working with a family who bought long-term care insurance coverage for both husband and wife many years ago.  They had been paying the monthly premiums regularly.  By the time they needed to trigger the policy for their care needs, they had paid over $100,000 in premiums.

One would expect that the insurance carrier, having been paid so much money, would make it easy for this family and the care providers to obtain the benefits.  Sadly, the opposite was true.

For example, invoices from the in-home care agency were mysteriously “lost.” Multiple times.  The two fax machines that are designated to receive the invoices are over-worked and frequently out of service.  The processing times are so long that it takes months before we can determine if an invoice has even been received.  The ability of Customer Service to actually help solve a problem is inconsistent at best.

I have been told by my client’s in-home care provider that this is not unique to my client, or to their insurance carrier.  This provider has the same problems with most of the carriers, for most of her clients.

Why do insurance providers make it so difficult to navigate their systems to collect the benefits for which consumers have already paid thousands of dollars?

Basically, insurance is about gambling.  The insurance companies gamble that they can take in more money in premiums than they pay out in benefits.  They put low-cost systems in place that make it more challenging for their policy-holders to track and receive all the payments for which they are eligible.

In the case of my clients, the wife passed away mere months after beginning to receive benefits.  By rough calculations, the insurance company collected $60,000 more than they paid out on her case.  In reality, it took months of repeated faxes, phone calls and escalations to managers to actually generate the payments that were finally made.

Thousands of policy-holders do not have the time, mental acuity or energy to persist in their efforts to force the insurance carriers to pay up.  So the most vulnerable – sick, elderly people – are, once again, taken advantage of by the companies that are entrusted with their financial care.  Why are we not surprised?

Become a smart consumer.  For more information, you can download a free brochure from the Society of Certified Senior Advisors as well as other excellent resources in their public library.

Submitted by Debora Harvey, Patient Navigator LLC

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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

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I went to pick up my hearing aids yesterday.  These are fairly new, only a few months old, yet I have had to send them back to the manufacturer twice so far, and I am not confident that they will work well even now.  The irony is that I paid $3,000 out of pocket for these assistance devices.  They are not covered by my health insurance.  I do have a “discount program” that enables me to go to a provider that has an agreement with my insurance provider, who supposedly charges me less than the current market rate for these devices.  Unfortunately, I am much less than satisfied by both the quality of the hearing aids, and the competence of the “audiological specialist” to whom my insurance company has steered me.

I was in my twenties when diagnosed with a hearing loss significant enough to need amplification. I resisted the need for hearing aids, but the doctor explained to me that, unless I could get the sounds to my brain, my brain would slowly lose the ability to recognize sounds and speech.  Even if my hearing were miraculously restored, I would be unable to understand the words people spoke.

According to the American Speech Language Hearing Association, hearing loss is the number one birth defect in the United States.  Twenty percent of children have some sort of hearing or speech disorder.  Half of the 28 million Americans with a hearing disability are under the age of 50.

Among other statistics, the National Institute on Deafness and Other Communication Disorders (NIDCD) reports that:

• Approximately 17 percent (36 million) of American adults report some degree of hearing loss.
• There is a strong relationship between age and reported hearing loss: 18 percent of American adults 45-64 years old, 30 percent of adults 65-74 years old, and 47 percent of adults 75 years old or older have a hearing impairment.
• About 2 to 3 out of every 1,000 children in the United States are born deaf or hard-of-hearing. Nine out of every 10 children who are born deaf are born to parents who can hear.

Yet many insurance companies significant limit coverage of audiological services, if indeed they cover them at all.   Medicare, the primary insurance for millions of older Americans, does not cover hearing aids or eyeglasses, basic needs for people who are losing the acuity of sight and hearing as they get older.

It is a matter of economics.  In order to keep private or group premiums affordable for individuals or employers, these type of assistance devices are excluded from coverage.  If Medicare were to include this coverage, its budget would be hundreds of millions of dollars more every year; dollars found in tax increases.

ASHA has an active advocacy program working to improve disability benefits in general, especially those relating to hearing disabilities.   Take a look if you or someone you know needs help.

To learn more about hearing loss and other communication disorders, visit the NIDCD Health Information site.

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The article cites a study released in 2006 study by the U.S. Department of Education that found that 36 percent of adults have only basic or below-basic skills for dealing with health material.  This means that 90 million Americans can understand discharge instructions written only at a fifth-grade level or lower. About 52 percent had intermediate skills: they could figure out what time a medication should be taken if the label says “take two hours after eating.”

The remaining 12 percent were deemed proficient because they could search a complex document and find the information necessary to define a medical term.  Adults who were ages 65 and older had lower average health literacy than adults in younger age groups.  Less educated and minority groups generally had lower levels of health literacy.

The Surgeon General of the United States has also tackled this subject.  Because only 12% of Americans have proficient health literacy skills, the majority of adults may have difficulty completing routine health tasks like understanding discharge instructions or diabetes care. There is a strong, independent association between health literacy and health outcomes. These outcomes include emergency department use, hospitalization, self-reported physical health, and mortality.

Interventions to mitigate the effects of low literacy in patients with chronic
conditions have been shown to improve health outcomes. In some cases, the interventions appear to be more effective for low literacy users compared with higher literacy users.  A fascinating January 2011 article in the New Yorker by Dr. Atul Gawande documents this point perfectly.

The Surgeon General concludes:

• First, public health professionals must provide clear, understandable, science-based health information to the American people.  In the absence of clear communication and access to services, we cannot expect people to adopt the health behaviors we champion.

• Second, the promises of medical research, health information technology, and advances in health care delivery cannot be realized without also addressing health literacy.

• Third, we need to look at health literacy in the context of large systems – social, cultural, education and the public health system.  Limited health literacy is not an individual deficit but a systematic problem that should be addressed by ensuring the health care and health information systems are aligned the needs of the public.

In an era when individuals are increasingly required to fend for themselves, health literacy is indeed a public policy issue.  Patient navigators and advocates obviously fulfill a vital need here.  Indeed, we here at Patient Navigator help to educate and empower our clients.  But the problem is massive and the resources small; there is no easy answer.

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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

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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

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• 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!

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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

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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.

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