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!
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:
- A diagnosis of cancer, especially breast or gynecological
- Heart Condition/recommendation for bypass surgery
- Diagnosis of a brain tumor
- Unresolved menstrual/gynecological problems
- Autoimmune disease, such as lupus or rheumatoid arthritis
- Irritable Bowel Syndrome
- 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
Please visit our January newsletter. This month’s topics discuss:
- the launch of the new Patient Navigator website with additional products, services and discounts for our clients
- the National Cancer Institute’s reorganization of the system of clinical trial cooperative groups and how that should improve the efficiency of clinical trials in the age of molecular oncology
- introduction in our Food Science series of the acid-alkaline balance in our food as another way to plan a healthy diet
We welcome your comments and suggestions for future articles!
The October edition of Navigator Notes contains articles on: a new appeal option for insurance denials; cancer cell autophagy (self-cannibalism) and Part 2 of our Food Science series. The newsletter is brought to you as part of Patient Navigator’s education initiative.
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