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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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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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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There are several important changes on the horizon this year as additional provisions of the health care law are implemented.  Here are a few.

Seniors are affected by several of the provisions. They will get big discounts on prescription drugs.  Prescription drug costs (Medicare Part D) could go down by $700 for a typical Medicare beneficiary in 2011.

Several provisions of the law promote prevention of disease, especially for seniors. Medicare enrollees will be able to get many preventive health services – such as vaccinations and cancer screenings - for free starting in January.

Medicare is increasing up payments for primary care by 10 percent from Jan. 1 through the end of 2015. It’s an incentive for doctors and others who specialize in primary care – including nurses, nurse practitioners and physician assistants – to see the growing numbers of seniors and disabled people covered by the program

Beginning soon after the Food and Drug Administration finalizes rules  in 2011, chain restaurants with 20 or more locations, and owners of 20 or more vending machines, will have to display calorie and fat information on menus, menu boards and drive-thru signs.

Consumers with flexible spending accounts (FSAs), in which pre-tax income can be used for medical purchases, can no longer spend the money on over-the-counter drugs, including ones that treat fevers or allergies and acne, unless they have a doctor’s prescription. The new restrictions, which lawmakers included in the health overhaul to raise more revenue, also apply to health reimbursement arrangements (HRAs), health savings accounts (HSAs) and Archer medical savings accounts (MSAs).

Starting this year, health insurers must spend at least 80 percent of their premiums on medical care, or face the possibility of giving rebates to consumers.  (Editorial note:  don’t hold your breath for any rebates).

For a useful timeline of all the changes coming this year, check the Kaiser Family Foundation website. The U.S. Government’s timeline of what’s changing and when is also helpful.  Bottom line:  Stay Informed!

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This month’s educational newsletter covers the following topics:

Rising Costs of Cancer Care vs. Cancer Prevention

What’s on the Health Reform Horizon?

Food Science – Part 5

Come take a look and become a subscriber!

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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

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