Patient Navigator

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

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

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

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

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

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

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

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

Guest Editor Debora Harvey, Patient Navigator

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I have been reading a book called The Strong Women’s Guide to Total Health. I like this book, not only for its great title, but because it is  easy to read and understand, with sensible health information.

As I was reading the section titled “Standing Strong; Our Living Framework,” I began to think about mothers and grandmothers.  When I was a child, my maternal grandmother seemed to be a giant – tall and strong. By her 90th birthday, she had lost more than 6 inches in height and had very little muscle tone.  She had absolutely no interest in exercise, satisfied that walking her dog and weeding her garden were quite enough.

My 87 year-old mother-in-law is now shorter than my 10-year old son.  She, too, has lost a substantial amount of height, strength and stamina. Whenever we mention any sort of exercise, or nutritional advice, she nods politely, but I can tell she is mentally brushing us off.

On the other hand, my mother tries to eat a diet that promotes bone strength.  I take 1200 mg of calcium/day, and do weight bearing exercise. My 13-year old daughter grumbles, but agrees to take her calcium and vitamin D supplements most of the time.   What will this mean as we age?

Well, the hope is that our bones, muscles and connective tissue will be strong enough to sustain us through 9, 10 or more decades of high-quality life.  Building strong bones at an early age – during childhood and adolescence – is our best defense against developing osteoporosis later in life.  But no matter how old you are, it is never too late to start taking care of your bones.

Some factors that affect your bone health, such as age, gender and genes, are beyond your control.  However, lifestyle choices, especially diet and physical activity, are responsible for up to 50% of bone mass and structure. Getting enough Calcium and Vitamin D in your diet, and some sort of weight bearing physical activity are highly recommended for people of all ages.

More information about prevention of osteoporosis and age-related bone degeneration can be found at the The National Osteoporosis Foundation website.

You can also visit the excellent women’s health site from the Department of Health and Human Services.

Guest Editor, Debora Harvey, Patient Navigator

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When faced with a decision about your own or a loved one’s medical care, you are often overwhelmed by the sheer immensity or complexity of the situation.   It is very tempting to accept a doctor or other medical care provider’s prescription for treatment and proceed directly.  Many doctors are amazing – helping patients understand the scope of their condition, their treatment options, and why one recommended course would be better for them than another.

However, sometimes people are discouraged from asking questions or doing research that would make them more comfortable with the proposed treatment plan, or even expose them to options that have not been considered.  Sadly, some care providers perceive that they are being “challenged” when a patient asks questions; others simply don’t take or make the time for a patient’s questions.

This type of situation is terribly unfortunate. It is only by communicating openly and fully with your care providers that you can make the decisions that best meet YOUR needs. Every person has the right to fully participate in all decisions regarding his or her own health care.

This legal doctrine is called the right to informed consent. The World Health Organization, the European Parliament, the American Hospital Association and many other organizations support and endorse the right of all people to make their own healthcare decisions in consultation with their caregivers.

The website  http://www.informedmedicaldecisions.org is dedicated to supporting and educating people on their rights to actively participate in medical decision making.

As a patient or caregiver, you have the right and responsibility to obtain as much information as you need to be able to commit to a course of treatment or test process. Some questions/statements that can help get the information you need include:

• Can you explain this to me?

• Where can I get more information?

• Can you write this down? Draw me a picture?

• How is this helpful to me?

• Are there any risks involved?

• Can you recommend a safe alternative?

• What are the probable side effects? What percentage of people experience these side effects?

• Does my insurance cover this treatment?

• What is the time frame for this decision – immediately, days, weeks, months?

• If I choose not to go ahead with this recommendation, what would the consequences be?

• How much time would I have to get a second opinion?

• I want to think about this before I make a decision.

• I don’t feel comfortable with this recommendation.

• Is there any else I can do or try?

By becoming actively involved in your care, you are likely to be more satisfied with your decisions.  Both patients and doctors benefit when patients are well-informed and play a significant role in deciding how they are going to treat or manage their health conditions.

Informed patients feel better about the decision process. Their decisions are more likely to match up with their preferences, values, and concerns. These patients are more likely to stick with the regimens the treatment requires, and they often end up rating their health after treatment as better.

Submitted by Debora Harvey, Patient Navigator

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I have three wonderful kids.  They are smart, funny, athletic, and – thank heavens – healthy.  Aside from infrequent viruses, periodic stomach aches and the occasional twisted ankle, they don’t slow down for much.

One of my worst nightmares is one of my children being diagnosed with a condition that requires a bone marrow transplant.  My kids are biracial, which means that the chance of finding a match in the existing pool of registered bone marrow donors is miniscule.

According to an article in The Washington Post on Tuesday, June 1, only about 3 percent of donors listed in the National Marrow Donor Program’s “Be the Match” registry are of mixed race. Washington Post Article

People who are multiracial are one of the fastest growing demographic groups in the United States.  However, despite donor drives and new efforts to utilize social networking to increase the number of donors, they are also the most under-represented in the marrow registry.

As the number of conditions that are potentially treatable with bone marrow transplants grows, so does the demand for donors.  The first line is a family member but often, no family member is a match.  Next, doctors turn to the national registry and even international registries to find matches for critically ill patients.  For single race patients, the chances are slim.  For those of mixed race, those chances are virtually non-existent.

I have been registered with the National Marrow Donor Program since 1991.  I have been called twice with the news that I was a potential match for a critically ill individual.  Both times I unquestioningly proceeded with the next level of screening necessary to determine a true match.  Sadly, both times, the potential recipient died before it was possible to schedule a donation.  In some ways I felt the loss of their lives deeply.  Lives that were lost that maybe, just maybe, a few ounces of my marrow cells could have had a role in saving.

For more information on registering to be a donor, click on  http:/www.marrow.org

Guest editor Debora Harvey, Patient Navigator

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