Patient Navigator

Connections to healthcare are critical for people managing a serious illness or condition. Often patients are unable to drive themselves to and/or from medical appointments. Many people depend on family, friends and neighbors for rides, but what if these resources are not always available? Transportation is a key part of a treatment plan.

Easter Seals Project ACTION and the American Medical Association have a new pocket guide for patients considering transportation options before or after a medical procedure.

The Planning for Transportation After Medical Services pocket guide is available in English and Spanish. It provides information and tips about planning for transportation, the types of transportation available, considering how your health status affects the type of transportation you choose, and also includes a place for notes and phone numbers.

You can download or order print copies of the brochure from the American Medical Association webpage for free.

Guest Editor:  Lucinda Shannon, Easter Seals

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A meta-analysis published in the September 10, 2012 online edition of the Archives of Internal Medicine has concluded that, “Acupuncture is effective for the treatment of chronic pain and is therefore a reasonable referral option.”

This conclusion comes from a fresh analysis of initial raw data that had been collected by 29 studies previously conducted in Germany, Spain, Sweden, the United States and the United Kingdom.  Collectively, these past investigations had involved nearly 18,000 patients.  The meta-analysis took six years to complete.

The meta-analysis included studies that compared acupuncture with usual care, like over-the-counter pain relievers and other standard medicines. It also included studies that used sham acupuncture treatments, in which needles were inserted only superficially, for example, or in which patients in control groups were treated with needles that covertly retracted into handles.

The researchers, led by Dr. Andrew J. Vickers, attending research methodologist at Memorial Sloan-Kettering Cancer Center in New York and the lead author of the study, found that acupuncture outperformed sham treatments and standard care when used by people suffering from osteoarthritis, migraines and chronic back, neck and shoulder pain.

“This has been a controversial subject for a long time,” he told the New York Times.  “But when you try to answer the question the right way, as we did, you get very clear answers. “We think there’s firm evidence supporting acupuncture for the treatment of chronic pain.”

The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health sponsored the study.  You can learn more in the NCCAM Spotlight and its acupuncture information page.

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When my wife Heather was diagnosed with mesothelioma, I wasn’t sure how to react, and now when she asks about what I went through, I can only think of it as an emotional learning experience. With this, I hope to explain more about my role as a caregiver and the way our family pulled through such a rough time.

As I sat in the doctor’s office, hearing that my wife had mesothelioma, I couldn’t believe it. We had just celebrated the birth of our one and only child, Lily. How could such a moment of joy be crushed so swiftly? I looked into Heather’s face and felt tears begin to sting. I didn’t know how we were going to get through this.

On the verge of breaking down, I sat in the office as doctors began to raise questions over our options. We had to make medical choices that would affect so many things in the future. I didn’t know what were the right choices and couldn’t even really think about what we should do when I was so emotional. Still, we had to make those choices, overwhelming as they were. It was the first of many times during my wife’s mesothelioma treatment that I had to help make impossible decisions while facing emotional turmoil.

For a while, I was angry, and I lashed out with profanity for no particular reason. I realized that I had to stop acting this way if I was going to be a pillar of strength for my family. Heather and Lily needed me as a rock, and I couldn’t let them see how scared I really was. Over time, I learned how to be the stable source of hope and optimism that my family needed.

After the diagnosis, every day was a full day of making those tough decisions. I had to learn to prioritize or I could never get everything done. Without the help of friends and family, I think that I wouldn’t have finished anything on those to-do lists. I’m so grateful for the wonderful people in our lives that reached out to us in our time of need and truly made a difference.

The most difficult time for me was when I didn’t see my wife or daughter at all for weeks on end. For two months, I worked and lived alone, as my wife underwent surgery in Boston, and then went to stay with her parents in South Dakota, where Lily had been during the operation. The surgery was very risky and invasive, but if successful would greatly improve my wife’s mesothelioma prognosis. My wife stayed in South Dakota to recover and prepare for the next phase of her mesothelioma treatment, which included radiation and chemotherapy. I, on the other hand, had to remain behind to work and take care of our home.  It was torture to be away from them for so long, but it was the right choice for my family at the time.  There was no way I would have been able to provide Heather and Lily with the care they needed, while still working to support my family. Of all the tough decisions that cancer forced on us, this was by far the hardest.

The one time I got to see them, I almost didn’t make it. I drove 11 hours in a snowstorm, sleeping in my car for a few hours while the plows cleared the roads, just to see them for a few hours on Saturday and Sunday before heading back to work on Monday. It was a long grueling trip for a few precious hours with them, but it was worth every second.

It was difficult not to see my family, but I never regret the decisions that were made. I learned valuable lessons throughout my experience. I learned how to control my emotions, accept help from others and take comfort in being able to make tough decisions. Today, my wife is healthy six years later and we have a beautiful family. I can only say thank you to those who helped and hope that others can pull through as well as we did.

Submitted by guest editor Cameron Von St. James

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With healthcare costs skyrocketing, there are some who are getting creative in helping to make care more affordable, especially for those in financial need. One way physicians are doing that: seeing patients via Skype.

One doctor in Baton Rouge, Louisiana, Dr. Lee Montgomery, uses it for follow-ups or to evaluate minor problems. He says it is not appropriate in a situation where a patient requires a diagnosis, and certainly in any emergency situation. But it’s one way he enables some of his patients, who otherwise couldn’t afford it,  to access his care because it costs a fraction of the price of a regular office visit. If you pay $30 per month for his membership program, Skype visits cost just $10.

But Skype isn’t all about reducing costs. Dr. Spero Theodorou, a plastic surgeon from New York, uses it as a screening tool to determine whether potential patients are likely to be good candidates for a cosmetic procedure called SmartLipo. He uses it not to reduce costs, but as a time-saving tool for his patients.

Dr. Loren Olson, a psychiatrist from Iowa, practices at six different sites, including some which are inner city. He estimates that approximately 50% of patients with serious mental illness are not accessing healthcare services, so Skype visits present a new opportunity for at least some of those patients to get the care they need. Skype visits aren’t as intimate as in-person consults, but for some patients, the alternative to Skype visits is not visiting at all. And he once had a patient inadvertently ask for a glass of water during a Skype session, so in his experience, patients can become as immersed through Skype as in-person.

Right now, most insurance carriers won’t pay for Skype visits, but that may change in the future.

Submitted by Dave Schlosser, Patient Navigator LLC

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Register Now for the November 2-3 National Association of Healthcare Advocacy Consultants Conference – the premier education and networking event for healthcare advocates.

The non-profit National Association of Healthcare Advocacy Consultants (NAHAC) is hosting its fourth annual national conference on November 2-3 in Boston, Massachusetts. This year’s theme “The Leading Edge of Reform: Roles and Goals for Patient Advocates” speaks to the growing need for advocates to shape health policy reforms and to help and teach consumers to find their way through our complicated healthcare delivery system.

As in previous years, this is the most important education and networking opportunity for healthcare advocates and patient navigators.  Members of NAHAC will receive a discount on registration but non-members may also attend.  Members of the public will be allowed to participate in our Saturday, November 3 sessions.  Space is limited, so register soon.

Our keynote speaker will be Rushika Fernandopulle, M.D., a medical reformer who has experience working with the most progressive health systems. His address “Building a New Model of Primary Care” will show advocates what roles they may have in new delivery models being implemented through healthcare reforms.

The current agenda of plenary and workshop session, to which more will be added, includes:

What’s Next for Healthcare Reform?” by Michael Miller, Director of Strategic Policy, Community Catalyst

“The Patient-Centered Medical Home,” by Maury McGough, M.D.

“Getting Past the Gatekeepers – How to Communicate and Collaborate with MDs, Nurses and Medical Staff” by Dana Wiltsek, Social Worker and Health Advocate

“When and How Should You Discuss Palliative Care Options with Your Clients?” by Dr. Eve Chittenden, Harvard Medical School Institute for Palliative Care

“Introducing your Clients to Mind-Body Medicine” by Peg Baim from Benson-Henry Mind Body Institute

“How to Solve Health Insurance Problems and be a Hero to your Clients” by Tina Lamont

“Transitioning to Independence” by Nell and Samuel Kief

“Leaving the Hospital – Advice for Transitions in Care” by Cheri A. Lattimer, RN, BSN

“New Frontiers in Cancer Research” by Christopher G. Azzoli, M.D., Massachusetts General Hospital Cancer Center

Don’t miss this unique opportunity to learn and connect with the best in the business.  For more information, check out the NAHAC website and registration.  Space is limited.

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The bewildering sensation of too much information, yet not enough knowledge to use it, is the reality for many people faced with a serious illness or condition.  How do you decide what to do?  Should you do exactly what the doctor says?  What about all that stuff on the Internet?  Are the books at the library or bookstore up to date with the information they offer?  How relevant is that clinical study you saw referenced in an article?  Is the advice from your cousin’s friend who had a related condition worth considering?

Making medical decisions is very difficult for most people, including those already in health care professions.  Sifting through the data, recommendations and opinions can be overwhelming.  That, coupled with the feeling that we don’t dare make the wrong decision, leaves most of us struggling and scared.

In Your Medical Mind, Dr. Groopman and Dr. Hartzband state that the answer to medical decision making does not lie in more information and more opinions, but in understanding the influences and biases hidden in the patient’s own mind.  Their position is that deciding on a course of treatment is infinitely more complex than a simple clinical or economic decision.

When struggling to make a decision to begin a new medication, to undergo surgery, to start a different type of therapy, the first source of information is the doctor that recommends it.  Armed with this data, most of us then turn to the Internet and search all the information that comes up when we type in the relevant words in a search engine.

Then our family, friends and neighbors chime in with anecdotes from their experiences.  All of this gets filtered though our own experiences and preferences.  No two people with make the same decision on medical treatment with the same degree of comfort.  As Dr. Groopman says, “the path to maintaining or regaining heath is not the same for everyone.”

Some people are minimalists, who prefer to keep all medical intervention to a minimum and work with their body’s natural immune and healing processes.  Others are maximalists, who want to jump in with everything that modern medicine has in its arsenal.

Some are believers, who approach their options convinced that the right solution for them is out there somewhere.  Others are doubters, who are skeptical of all treatment options.  Most people fall somewhere on the spectrum of these extremes.  Understanding where your mind-set is regarding medical treatment is useful in considering your options.

Individual preferences about risks and benefits, about quality of life during and after treatment matter tremendously.  The practice of medicine is, and always will be, an art, not an exact science.

Click here for a radio interview on this topic with Drs. Groopman and Hartzband.

For guidance in evaluating medical options, see Patient Navigator’s Roadmaps:

Evaluate Health Information on the Internet

Develop Your Treatment Plan

Guest Editor:  Debora Harvey, Patient Navigator LLC

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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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