The September edition of Navigator News includes articles on: Understanding Palliative Care; The Fine Print of your Insurance Policy; and Food Science Part 1. We welcome your feedback!
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
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
Lines of pain etched into her face. Eyes too bright, revealing the agony inside. Jaw tight, skin stretched taut. I never really thought about the descriptions of people in pain that I have read in newspaper stories, magazine articles, online sites, novels and non-fiction books, other than to appreciate the evocative images. However, it has struck me, that not only are those phrases highly accurate, but they only reveal a small piece of what a person shows externally when they are living with chronic pain.
There are many physical conditions that result in chronic, intense pain. People with these conditions have to manage to live and try to function in varying degrees of agony, sometimes 24 hours a day, 7 days a week. This is an entirely different situation than the pain that the majority of the population may encounter, say, from a broken bone, childbirth, or dental work.
To add insult to injury, many people suffering from intense chronic pain are told that it is “all in their head” and that they should see a psychologist. Or they are referred to a pain clinic, whose doctors are more interested in administering the latest drug of the month, likely not covered by insurance, than in listening to the patient and understanding the nature of his or her specific condition.
Chronic pain itself, whatever the underlying cause, is a killer. The effect of ongoing intense pain on the mind and body actually does result in an earlier death. http://updates.pain-topics.org/2010/04/severe-chronic-pain-is-killer-study.html
This evidence shows that effective treatment of ongoing severe pain is essential for any sort of positive quality of life.
Thankfully, we at Patient Navigator have unearthed several palliative care physicians who are not only invested in alleviating the patients’ pain, but actually listen to the patient, working with them to improve their quality of life, while coordinating care with other members of the medical care team to treat the underlying cause. I have seen patients weep in gratitude that a medical professional finally takes them seriously. I have seen their energy levels increase, and their lives turn around, when they finally find the right balance of medications for pain management.
I have seen their eyes turn bright with smiles, without the pain shadowing behind.
For more information on managing chronic pain, see:
Pain Topics: http://pain-topics.org/
American Chronic Pain Association: www.theacpa.org
For more information on Palliative care: http://www.getpalliativecare.org/ and http://www.nlm.nih.gov/medlineplus/palliativecare.html on Medline.
Submitted by Patient Navigator Debora Harvey
Should I be concerned that my son’s pediatrician has never heard of the National Cancer Institute (the “NCI”)?
A few weeks ago, during my son’s routine 12-month check-up, his doctor and I were making small talk and it came up that I am a Cancer Information Specialist trained by the NCI.
My son’s doctor, a lovely woman whom we’ve seen before turned to me and said “The NCI?” to which I replied “The National Cancer Institute” and her reply was “What is that, some sort of Government agency?”
I was blown away. My jaw practically dropped to the floor. Maybe it’s naiveté, but I just assumed that all doctors, regardless of their chosen field of specialization, would have at least heard of the National Cancer Institute (www.cancer.gov) Am I wrong? I understand that doctors choose a special track or focus and that they cannot be expected to be fully familiar with each facet of the medical world, but aren’t all aspiring doctors introduced to each field of medicine while in medical school?
Even if aspiring doctors aren’t exposed to all fields of medicine in their education, wouldn’t someone in the medical world, particularly a doctor, know that the National Cancer Institute, created in 1937, at least existed?
I left the office a little perplexed. If this doctor hadn’t heard of one of the largest medical institutions in the world, should I let her be in charge of my son’s health and well being? Is this a big deal? Am I making too much of this? I would love to hear from others about this topic. Please comment and tell me your thoughts.
Guest Editor, Heather Matthews – Patient Navigator LLC Cancer Information Specialist
The Internet is an amazing tool for people researching health conditions, possible treatment options or medical specialists. An unlimited amount of information is available at the click of a mouse. This is good, right?
Unfortunately, the reality is a double-edged sword. Yes, the Internet lets people become well informed, but it has can also foster “cyberchondria” and “analysis paralysis.”
I now see my Great Aunt Frieda in a whole new light. I’m glad that she lived before the Information Revolution. You see, Auntie F, as we called her, was a hypochondriac. She constantly visited her doctor for a multitude of problems. It was easy then because doctors could spend more time with patients and it cost less. So her doctor would listen to her, reassure her that she was not dying of the symptom of the week, and see her again in a week or two to hear about her newest issue. She lived, in nearly perfect health, until a peaceful death at age 95.
The 21st century gives us a new twist to this story. “Cyberchondriacs” spend hours at the computer screen, typing in symptoms or fears, wading through the results, both accurate and inaccurate, and convincing themselves they have a certain condition. Often, they will print out reams of documentation and present themselves to their doctors, having already diagnosed their “condition” and determined a course of treatment. To make matters worse, bogus information may appear as genuine evidence-based medicine and is often flanked by marketing ploys offering miraculous treatments
In a May 2002 research report, the Pew Internet & American Life Project (www.pewinternet.org) called them “health-seekers.” “About 6 million Americans go online for medical advice on a typical day,” said Pew in its Vital Decisions report. “That means more people go online for medical advice on any given day than actually visit health professionals (on a given day),” Pew said, comparing the 6 million estimate figures to an unspecified, but lower number provided by the American Medical Association.
What is the cost of cyberchondria? It is estimated in the millions of dollars and rising every year due to unnecessary visits to the doctor’s office or emergency room, un-needed and possibly invasive tests.
Online medical information is wonderfully helpful and useful in many situations. But, like anything else, moderation is the key. Choosing sources wisely, using good sense to edit the results, and getting OFF of the computer when it all becomes too much are important keys to successful use of online health information. To learn more about evaluating health information on the Internet, visit http://tinyurl.com/Evaluate-Info-On-Internet
Submitted by Guest Editor Debora Harvey, Patient Navigator LLC
A cancer diagnosis is an emotional earthquake, unleashing fear, anger, sadness, confusion and uncertainty. Your life has been turned upside-down, your future is at risk and at stake and you feel betrayed by your body. Your colleagues, family and friends are shocked and afraid and you must begin to deal with the extensive medical, financial and emotional hurdles involved with a cancer diagnosis.
It comes as no surprise that those diagnosed with cancer experience a roller coaster of feelings and emotions at the outset. However, if feelings of anger, sadness or emptiness persist for an extended period of time or if you are unable to get through your day, it may be beneficial to seek professional help.
Depression is a condition that affects many cancer patients at one point or another. In fact, up to 1 in 4 people with cancer do have clinical depression. Clinical depression causes great distress, impairs functioning, and may even make the person with cancer less able to follow their cancer treatment plan. The good news is that clinical depression can be treated.
If you are experiencing depression, speak to your doctor or a trusted friend. He or she can direct you toward trained mental health practitioners who will help you through these adjustments and treat your condition. You may also benefit from a support group to gain knowledge and share experiences with others in a similar situation. For many people, it helps to know you are not alone and to create a network of support and understanding. This may help you put your cancer in a new perspective and allow you to focus on healing and recovery. Check with your hospital and community to find a local support group. Many national advocacy groups sponsor local support groups.
For more information, please visit the American Cancer Society’s website for their definition of depression and suggestions for coping: http://tinyurl.com/CancerDepression
The March 4, 2010 New York Times included the following article which discussed the emerging profession of health navigators and patient advocates. Take a look. http://tinyurl.com/healthnavigatorNYT
Since I first wrote on this topic in April 2009, many people have contacted us wanting to know more about patient advocate or navigator training programs or job opportunities. Here is a February 2010 update.
Patient navigation/advocacy is a new and emerging field. It has come about because of the complexity, inefficiency and cost of the current American health care system. You probably saw from my website (www.patientnavigator.com) how I came to be a patient navigator (advocate, medical mentor, cancer coach) as a second career. You can also get a sense of the services we offer as well as the range of clients with whom we work.
The most exciting thing to happen in 2009 was the launch of The National Association of Healthcare Advocacy Consultants (www.nahac.com) . I was elected as its Vice President and we held our inaugural conference November 14-15, 2009 in Berkeley, California. The next conference will be November 4-6, 2010 in Washington, D.C. and First Lady Michelle Obama is our invited keynote speaker. This professional association is the best way to get started in the field of patient advocacy. I strongly encourage those interested in the field to join (www.nahac.com).
There are several pieces in the “navigator” landscape.
An increasing number of hospitals in the U.S. and Canada employ navigators to help patients manage their hospital stays. Those hospitals usually require nursing degrees and frequently work with breast cancer patients (because there is funding available from private foundations such as Susan G. Komen).
The American Cancer Society trains navigators in some cities to work with underserved populations. They get funding, in part, from the NCI program to train navigators. http://tinyurl.com/ygll4ca
The National Institutes of Health, National Cancer Institute http://crchd.cancer.gov/pnp/pnrp-index.html is funding several patient navigator pilot projects across the U.S. in underserved and minority areas and trains navigators working in those projects. A Colorado hospital is one of those projects and they conduct training: http://patientnavigatortraining.org/index.htm
The American Recovery and Reinvestment Act is funding additional patient navigator positions staffed by nurses in some National Cancer Institute-sponsored community hospitals. To learn more about these job opportunities, see the following NCI article: “Patient Navigators Ensure Cancer Patients Get What They Need” January 25, 2010
http://www.cancer.gov/recoveryimpact/page5
Much of this work is based on the model set by Dr. Harold Freeman in Harlem to develop community-based navigator programs - http://www.hpfreemanpni.org/ They offer training to groups and non-profits seeking to work to narrow disparities in access to cancer care.
I hear often from folks around the country who want to become patient navigators/advocates. The most comprehensive training program I know of is an online training and certification launched by the University of Miami on September 11, 2009. It is called the Healthcare Advocacy Certificate Program. For complete information, visit http://tinyurl.com/lahzds or http://tinyurl.com/yghstk6
Separately, Sarah Lawrence College offers a Master’s degree in patient advocacy. http://www.slc.edu/graduate/programs/health-advocacy/index.html
I have learned of training at the University of Wisconsin at Madison for certificates in Consumer Health Advocacy http://www.patientpartnerships.org/certificate.php but have heard it will be up and running in the Summer of 2010.
Cleveland State University offers a Patient Advocacy Certificate Program. http://www.csuohio.edu/ce/certificates/health/pacp/index.html
The University of Phoenix has an online program to become a patient advocate: http://tinyurl.com/yjld3ln.
The President of Healthcare Liaison who is also the President of the National Association of Healthcare Advocacy Consultants (www.nahac.com), Joanna Smith, offers training workshops for how to become a patient advocate: http://healthcareliaison.com/workshops.html. Her workshops are open to anyone with an interest in the field but are a requirement for those considering the full Credentialing Program. The full credentialing program for medically trained people runs either 9 months ($2,500) or one year ($3,000). She refers non-medically trained people to the other programs in this paper.
In Fall 2010, the Integrative Medical Clinic Foundation and Sonoma State University in California will offer a Patient Navigator Certificate Program and expand the role by including an Integrative Health component. They are found at www.sonoma.edu/exed and then click on Patient Navigator.
Locally, in the Washington, D.C. area, the Smith Farm Center for the Healing Arts offers community patient navigation training www.SmithFarm.com
Most of us who do this work come to it through our own experiences dealing with the health care or elder care system (whether as a patient, caregiver, nurse, social worker, etc.) In most cases, there is no specific background or education that is required. I have found that a passion for helping others, good research, communication, interpersonal and organizational skills as well as the ability to be creative in finding resources and solving problems are what it takes.
Patient advocate Trisha Torrey recently wrote an excellent article about job prospects for patient navigators/advocates. You can read it here:
http://patients.about.com/od/caringforotherpatients/a/patientadvocatejobs.htm
Here is a link to a separate guide published by Trisha Torrey about setting up an advocacy business: http://patients.about.com/b/2009/03/31/start-a-patient-advocacy-business.htm
In order to connect folks throughout the U.S. who are interested in this field, I have formed a virtual “Patient Navigator” working group through LinkedIn, the professional networking site. Please consider joining our virtual group as we collaborate to build this profession. All you need to do is go to www.linkedin.com set up a profile and then ask to join the Patient Navigator group. Please include an explanation of why you’d like to join the group. It’s a good way to stay in touch and make contacts.
Elisabeth Russell, Founder and President, Patient Navigator, LLC
Updated March 16, 2010
Scientists have mapped specific genes that turn normal healthy cells into cancerous cells through The Cancer Genome Atlas Project (TCGA).
Through the TCGA, researchers have now developed a more reliable scientific method to identify these genes. As this research is shared around the globe, more accessible and effective cancer treatment options are being discovered. The ultimate goal of the TCGA is to create a catalogue of these “defective” genes, thereby offering increased detection, and ultimately, better prevention and treatment of cancer.
As healthy cells grow and divide, they not only produce more healthy cells but also kill off cells that are no longer needed. A cancer cell is produced when an otherwise healthy cell grows abnormally or does not die off when it should. These cancerous cells then form a mass or tumor.
Through the TCGA, researchers are trying to pinpoint why these specific genes change and how that can lead a cell to become cancerous. Once this information is gathered, cancer treatment will move to a more targeted form of treatment. Doctors will target only the abnormal gene, as opposed to today’s standard treatment of chemotherapy, which affects the whole body. Such a change in treatment will be beneficial because standard chemotherapy kills off cancerous cells but also some healthy cells in the process. If researchers can instead identify the “defective” genes and target them directly, healthy cells will stay intact and be less affected by the cancer treatment.
For example, the National Institutes of Health recently announced that TCGA identified distinct subtypes of glioblastoma multiforme, the most common form of malignant brain cancer in adults. In the past, doctors treated this type of brain tumor as a single disease, whereas now they know that glioblastoma multiforme is, in fact, four distinct molecular subtypes.
In addition, through the TCGA, researchers have also discovered that response to chemotherapy and radiation differed by gene subtype. Although the current standard of treatment will not change overnight, these new discoveries will help doctors to tailor a cancer treatment plan using genetic information.
Originally a pilot project, TCGA has turned out to be quite a success in demonstrating the value of cancer research. In the fall of 2009, President Obama announced that the National Institutes of Health will spend $275 million to expand TCGA to other types of cancer, thus opening the door for more specific treatment options and hopefully more cures.
To learn more about the cancer cells we have in our body, please read our January 27 blog post at: http://patientnavigator.com/blog/2010/01/27/we-all-carry-cancer-cells/
For further information on The Cancer Genome Atlas Project, please visit: