Patient Navigator

I have been reading “The Hippocratic Myth” by M. Gregg Bloche  MD.   As a good book always does, it has given me a great deal to ponder at odd moments during the day.

While reading, I found myself engaged in internal debate regarding the obligations inherent in the doctor/patient relationship.  Is the nature of this important relationship one between equals, between a superior and inferior?  A relationship of trust, one of dependency, or simply a contract between a consumer and the person hired to perform a service?

The fact that the answers to the question are “all, some and none of the above,” depending on the situation, makes defining the roles of doctor and patient very difficult.  However, in all cases, physicians and patients owe each other certain basic obligations.  My own personal list of these duties is as follows:

Doctors owe Patients

• Respect as a fellow human.  A patient is not “the cardiac case in Room 3”.  The doctor is not omniscient or omnipotent and should never act as if she is.
• Respect for their time. Doctors have limited time to treat patients; people do understand this and are usually willing to wait a reasonable amount of time.  However, after an hour and a half in the waiting room with no explanation, a patient is clearly not being respected.
• Read the chart before entering the room. This simple act can prevent many misunderstandings and clinical confusions.
• Keep the patient’s information private and confidential.
• Provide evidence-based care. Doctors owe it to their patients to stay current on research and clinical trial results in order to provide the best care available, even when the new evidence contradicts what the doctor learned in medical school.
• Respect informed decision-making. The doctor can and should provide his absolute best medical opinion.  However, the patient is the ultimate decision-maker and all physicians should support the goal of having well-informed patients making the best decisions for themselves.

Patients owe Doctors

• Honesty. Doctors cannot provide effective care if a patient fails to disclose aspects relevant to their condition and treatment options
• Respect for their time. This one works both ways.  A respectful patient will be prepared for his appointment and have a concise list of questions or issues to discuss, not spend precious minutes trying to remember something he thought about the night before.
• Prompt payment.  Increasingly, doctors are getting squeezed between patients’ own economic challenges, the insurance companies’ failure to provide coverage due to some glitch or technicality.  Physicians are carrying this financial burden, sometimes for a year or more.
• Adherence to prescribed treatment. The patient has an obligation to adhere to a treatment as it is prescribed by the doctor, provided that the treatment is not making things worse, and that the prescribing physician is available for communication regarding the results and possible side effects of the treatment, and open to adjusting the treatment if the patient is not responding well.

By recognizing and being mindful of these obligations and responsibilities to each other, the physician/patient relationship would proceed more smoothly and easily that we often encounter.

Guest Editor:  Debora Harvey, Patient Navigator LLC

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If you are currently expecting a child or are planning to in the future, you have the opportunity to preserve a potential lifesaver for not only the child to be born, but also your other kids and maybe even their mother. And it’s normally discarded in the trash. What is it? Blood from your baby’s umbilical cord, when properly collected and preserved immediately after delivery,  contains viable stem cells that can later transform into a variety of different cell types. Transplanted into a sibling, mother, or the baby years later, the stem cells can be a treatment for a variety of diseases, including various cancers, bone marrow failures, blood and metabolic disorders, and immunodeficiencies. It is also being tested in treatments for diabetes, cerebral palsy, and brain injury.

After collection at birth, cord blood (CB) is shipped to a CB bank where it is processed, which usually costs $1500-$2500. Thereafter, storage fees are approximately $150 annually, a cost sometimes guaranteed not to rise for 20-25 years. These expenses are typically not covered by insurance, unless someone currently covered by your policy (like another child) has an anticipated need for CB because they have been diagnosed with an illness treatable with CB.

You might also be able to donate the CB to a public bank, available for others to use, at no cost in certain hospitals. If your hospital does not participate, you may still be able to donate by contacting one of the public banks directly.

Unfortunately, CB is not a panacea. A baby’s own CB cannot be used to treat certain cancers because it usually contains the same genetic predisposition that caused the cancer. And the odds that you will ever utilize the CB are remote: the most commonly quoted odds are 1 in 2,700, or 0.04%, and some calculate the odds as much less. To put that in perspective, that’s about double the chance you might be killed in a car accident in any given year. But you can cut your risk of being killed by half, back down to the odds you’d use CB, by simply using a seatbelt, and you don’t think twice about driving your car. And the chances of winning the lottery? 1 in 15 million, or 0.000007%. Yet some of us still think we can beat those odds, at least occasionally.

Many professional organizations advocate donating CB to public banks for use by the public at large, much like blood banks. But due to the expense and the odds you could ever utilize privately banked CB, many of these same organizations, including the American Medical Association, the American Academy of Pediatrics, American Congress of Obstetricians and Gynecologists, and perhaps most importantly, the American Society for Blood and Marrow Transplantation (who members are physicians who would likely actually treat someone with CB) still do not recommend retrieving CB unless a family member has a disease that can be potentially treated with it.

So what should you do? Electing to privately store CB is much like buying an insurance policy. If you ever need it, you’ll be glad you did. If your child is that 1 in 2,700, it doesn’t matter what the odds are. You just have to decide if a few grand is worth that peace of mind.

Guest Editor:  Dave Schlosser, Patient Navigator LLC

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When you think of cinnamon, you undoubtedly conjure up memories of such culinary delights as warm delicious cookies or freshly baked pie. But your kids or grandkids may have other thoughts.  As a spice, powdered cinnamon serves as a tasteful complement to many of our favorite treats, but swallowed dry by the spoonful, it often causes gagging, vomiting, coughing, choking, and throat irritation that can require medical treatment. Why would anyone intentionally do that? Peer pressure, and be forewarned: the “cinnamon challenge” is a new game among some youth.

According to the American Association of Poison Control Centers, the number of calls made to their centers concerning teens exposed to cinnamon has risen dramatically in the past year. In just the first 3 months of 2012, they’ve received 139 calls, up from 51 in all of 2011. Teens with asthma or other respiratory conditions are at greater risk of respiratory distress, including shortness of breath and difficulty breathing.

Unfortunately, one way teens may learn about the cinnamon challenge is through a YouTube video where a woman who calls herself “GloZell” videos herself swallowing several spoonfuls of cinnamon. Within seconds of ingestion, she has a spastic episode of gagging and coughing, and is clearly in distress. She then turns the camera off. As of this writing, it has been viewed nearly 12 million times.

So if the teens in your life suddenly show a keen interest for the cinnamon in your house, it may not be for pumpkin pie and spiced apple cider. Check it out.

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Doesn’t it seem like these days you can do lots of things virtually? We have modern developments like virtual assistants, virtual environments, and virtual machines, but does watching the latest virtual reality show really take discomfort and stress out of our lives?

Well, now there’s a virtual development that can: a virtual colonoscopy. No, unfortunately, it can’t be done with your smart phone or even from the comfort of your couch – yet. But if the thought of a 6-foot tube going “where no man has gone before” makes you skip this important cancer screening tool altogether for the second leading cause of cancer death in the U.S., you will be happy to know you may soon have a more comfortable alternative.

A virtual colonoscopy uses computerized tomographic (CT) technology to acquire a 3D image of the areas normally examined in a traditional colonoscopy. Although you must still endure the repeated trips to the bathroom to cleanse your bowels and a carbon dioxide gas enema must be administered using a small tip to inflate the colon, no long tube or sedation are required.

While a 2008 study demonstrated the virtual technique was just as effective as the traditional, experts were still unsure of its ability to detect problems in older patients, who typically have an increased number of polyps. However, in a new study led by a physician at the Mayo Clinic’s facility in Phoenix and published in the journal Radiology, it appears that those fears are now unfounded. The investigators determined that the virtual technique was just as effective for patients over age 65 as those aged 50-65.

With this additional validation, the hope is that the virtual technique will ultimately lead more people to getting screened, as it accommodates not only those who are overly anxious about the traditional procedure, but also those who have a bowel obstruction or use anti-coagulant drugs.

So talk to your doctor, because now you have no excuse to get screened!

Guest Editor:  Dave Schlosser, Patient Navigator LLC

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If you ever find yourself  needing an organ transplant, you probably will consider yourself very lucky to find a donor match. Unfortunately, many folks in those shoes aren’t so fortunate, and die before a matching donor organ is identified. So clearly, anything that can be done to cast a greater net over potentially matching donor organs is a very welcome development.

Even if you do find a match, you will likely be faced with taking immunosuppressant drugs for the rest of your life to combat organ rejection, which in turn increases your susceptibility to a variety of complications, including infection, cancer, diabetes, and cardiovascular disease. And even then, your body may still reject your new organ.

But in what is hailed as a potential game changer in transplantation science, a small preliminary study suggests that both issues can potentially be addressed by transplanting stem cells from the organ donor to the recipient.

The study, recently published in journal Science Translational Medicine, tested the ability of donor stem cells to trick the recipient’s immune system into treating their new kidney, received from the same donor, as their own, ultimately saving both the organ from rejection and the patient from having to take immunosuppressants.

All of the 8 patients in the study received kidneys that were “less than perfect” matches; that is not necessarily unusual, but they faced a major uphill battle in preventing rejection. But what is unusual is that 2 days after the kidney transplant, they also received an infusion of immune cells bioengineered from the donor. And amazingly, 5 of those patients were able to discontinue their use of immunosuppressants completely after a year.

Furthermore, they show no signs of organ rejection during follow-ups 6 to 20 months after stopping those drugs.

While experts find this a very enticing development, it is not yet clear if these patients’ acceptance of their new organs will translate into a lack of early warning capabilities to detect other foreign bodies, like infections or malignancies. Furthermore, it is also a very small pilot study, and much follow-up study is needed. But 2 pioneering transplant surgeons at Massachusetts General Hospital say it “may potentially have an enormous, paradigm-shifting impact on solid-organ transplantation.” That’s great news.

Guest editor:  Dave Schlosser, Patient Navigator LLC

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According to an analysis by the IMS Institute for Healthcare Informatics, about 1% of the privately insured population drives about 25% of overall health costs. Their total medical bills average approximately $100,000 per year for hospital stays, prescriptions, doctor and ER visits, etc. As you might expect, many of these folks are in the final stages of life, but many of them simply have chronic health issues like high blood pressure or diabetes. People with chronic conditions filled 78% of all prescriptions, and costs incurred through outpatient care actually comprises the largest share of overall spending.

As an example, the annual cost of effectively managing diabetes typically averages about $12,000, but can quickly approach $102,000 if it rages out of control and the patient experiences complications such as heart attack, stroke, poor vision, or limb amputation.

Right now, many of these chronic issues are considered “pre-existing conditions”, and can serve as the basis for an insurer to deny coverage. But starting in 2014, when the new federal health care law is expected to go into effect, insurers will no longer be able to do this. Ideally, this ultimately gives insurers incentive to make sure their current customers do not reach that 1%, and they are starting to implement ways to do that, such as providing additional means to help manage chronic conditions and provide wellness incentives. But they are also evaluating different ways of compensating physicians, such as paying them more to coordinate care and developing ways for them to share in savings achieved when a patient avoids a hospital admission through better treatment.

Regardless of what may happen over the next few years, however, one thing is clear: the current model of health care insurance is changing.

Guest Editor:  Dave Schlosser, Patien Navigator LLC

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Long-Term Care (LTC) insurance can be a sensible purchase for folks who expect that they will need caregivers as they grow older.  Unless you are very poor and eligible for Medicaid, or very wealthy and can afford to spend a significant portion of that wealth on caregivers, LTC insurance is worth considering.  Once they’ve paid years of premiums, consumers rightly expect that their LTC insurance policy will pay for this care, whether it is at home or in a facility.

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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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

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Submitted by guest editor Debora Harvey, Patient Navigator LLC

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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A recent Washington Post/Kaiser family foundation article offered an alarming look at many Americans’ low level of health literacy, defined by the Department of Health and Human Services as “The degree to which individuals have the capacity to obtain, process, and understand
basic health information and services needed to make appropriate health decisions.”

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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