Top Tip #4: Keeping Your Hair During Chemotherapy

top-tips4For many women, and some men, the thought of losing their hair while undergoing chemotherapy is devastating—some will even decline recommended cancer treatment because of this. There is evidence that hair loss can be mitigated if not significantly prevented, by super chilling the scalp at the time of the chemo infusion. This kind of scalp hypothermia has been used for many years in Europe. The FDA only approved the first system for use in the US in 2015, though women here have independently been using this technique for some time.

Super chilling of the scalp is achieved by fitting extremely cold caps tight to the head. This achieves two things: 1. the veins that provide blood supply to the scalp constrict as the head cools—this means that there is less chemo that reaches the hair follicles; and 2. for the drugs that do reach the follicles, there is reduced uptake into the follicle because the cold also restricts the root’s metabolic activity.

Read these Top Tips on reducing the likelihood that this will happen to you or a loved one.

 

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Become your own best Patient Advocate

CJ offers a free health session to local community and retirement centers with guidelines on how to become an excellent patient advocate for oneself or a loved one. The basic challenge: no one has ever been taught how to interact with medical professionals or how to navigate our increasingly complex health care system. CJ helps individuals with straightforward advice on how to get the most out of a doctor’s appointment, how to stay safe in the hospital, to avoid misdiagnosis and more. In a short presentation followed by a Q&A discussion, audience members will walk away with more knowledge on:

• Becoming an Engaged Patient
• Communicating and Partnering with their Doctor
• When Advocacy is called for
• Safe Hospital Stays
• The Risks of Overtreatment and of Undertreatment
• When to consult a Professional Advocate
• How to Find and Work with an Advocate

Contact CJ today to schedule your a free session for your organization.

Top Tips #3: Preventing a Misdiagnosis

TT#3According to a recent IOM report, every adult in the US can anticipate at least one misdiagnosis in their lifetime that will have serious consequence. This adds up to about one in every 20 diagnoses every year, affecting some 12 million people. To be misdiagnosed means that someone has not been diagnosed correctly, has not been fully diagnosed, or their diagnosis was missed altogether.

One can understand how this happens: doctors are rushed for time, often interrupt a patient’s narrative that might yield the key facts that will help in proper diagnosis, and many symptoms for different disorders or diseases overlap so it is easy to pursue the wrong branch of a “differential diagnosis”.

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Why Healthcare Navigators or Patient Advocates?

The growth of Healthcare Navigators and Patient Advocates as support services for patients is reasonably new, but stems from the changes in our health care system over the past fifty years. There is the good news in these changes with, for instance, myriad advances in medicine, a wealth of online resources and an awareness of good health practices. But the bad news, outside of the cost of care and how it is paid for (a subject for a future discussion), is the fragmentation of care in chronic illness. Additionally, somewhere along the way, the patient fell out of focus—such that providers now emphasize having “patient-centric” care. (If the patient is not centric to the provision of medical care, one could ask: what is?)

That aside, the challenges of navigating a medical journey today are numerous: care in chronic conditions is complex, involving multiple silos of experts though rarely an integrative plan; there are no roadmaps so it is difficult to plan or to manage expectations; and there are many moving targets in the science of medicine. In many cases, patients lack access to the most current, clinically relevant knowledge that would enhance the quality of their decision-making about treatment strategies. There are nascent efforts underway to address this gap, such as at Cancer Commons and Patients Like Me—but there is a long way to go before patients have consistent access to this kind of data.

Healthcare navigators and patient advocates help knit together these disjointed elements into more comprehensive ecosystems of care; we pay attention to issues of patient safety and comfort, support care givers and make sure that personal values and quality of life considerations are integrated into plans of care. We can help narrow the information gap through our resources, knowledge and research; and plot a roadmap of care that integrates with a patient’s busy life and commitments.

The challenges for patients today are clearly highlighted in Tom Brokaw’s book, A Lucky Life Interrupted, in which he reveals his diagnosis with multiple myeloma and his journey through the medical system. He notes that in: “too many healthcare facilities and in too many specialized practices the patient is a one-off: advised or treated and then passed along with no connecting communication between the last and next physician. One of the enduring lessons of my cancer experience is that of the need for a personal ombudsman…”. In Brokaw’s case, his daughter –an emergency room physician—served as his advocate. For others who do not have doctors or nurses in the family, there is now the option of hiring a professional health care navigator and advocate.

Mr. Brokaw is being treated by doctors at the Mayo Clinic, where he sits on the Board, and at Memorial Sloan Kettering, which is near his home in New York City. He acknowledges that he is receiving the best of the best in terms of medical care—and yet even in these circumstances, he reveals “…his growing discomfort with the lack of shared dialogue in my treatment. With the exception of the MIA physical rehab physician, all the doctors were individually attentive, but rarely did I feel they were wearing the same team colors.” Brokaw acknowledges the immense pressure most doctors operate under, and states “In complicated cases, it seems to me that the patient-team relationship should be seamless and all inclusive.” Hear Hear!

I regret for Mr. Brokaw that he is having to undergo this experience but am very appreciative of his willingness to be frank with his readers about the hurdles he faced as he sought information about his condition, and options in care. And I thank him for sharing his observations that navigating and managing a cancer journey is difficult, even in the best of circumstances. For those who do not have medical providers as family members, if and when you face a complex illness, consider hiring a navigator or advocate. We are here to help you.

Top Tips #1: Building a Healthy Partnership with your Medical Team

Top Tips #1Here are a few Top Tips on building a healthy partnership with your doctor and getting the most out of your doctor’s appointment.

Your goals are three-fold. The first is to build healthy partnerships with every member of the medical team involved in your care, generating mutually respectful relationships—this investment in relationship building will pay off generously as you navigate your healthcare journey. The second is to demonstrate that you are knowledgeable about your body and your medical history and that you can articulate your current issues well. The final goal is to set and achieve “walk away” objectives for your appointments—with an action plan and next steps to resolve your current issues.

Importantly: know that you are the expert in your body, while the doctor is the expert in medical knowledge about the body. Ideally, you will work in partnership to address your health issues.

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Diagnostic Errors ~ More common than you think

A recent Institute of Medicine (IOM) report warns that most Americans will experience a “meaningful diagnostic error” at least once in their lifetime—sometimes leading to “devastating consequences”. While good metrics on diagnostic errors have yet to be developed, the report estimated that diagnostic errors:

• Affect 5% of US adults seeking outpatient care every year;
• Account for 6 to 17% of adverse events in hospitals; and
• Contribute to 10% of patient deaths.

Modern medicine is complex—with scientific advances in molecular diagnostics leading towards ever more personalized and precision-based medicine. It seems almost counter-intuitive that the diagnostic process can be as fallible as it appears; the report reinforces the view that we each need to be able partners with our doctors to reduce the likelihood of diagnostic errors. Continue Reading

Top Tips #2: Stay Safe—Know your Medication Rights

Top Tips #2bDespite all the high tech we see in hospitals with computerized physician orders, electronic medical records, and bar-coded patients and drugs, medication errors can and do occur. In fact, medication errors are the single most preventable cause of patient harm.

Whether you are an inpatient or an outpatient, get educated about the drugs you have been prescribed—know their names, the dosages, schedules, reasons, and possible side effects; make sure you have discussed any possible allergies with your doctor. Importantly: if you are to stop taking a drug, know what the recommended strategy involves.

Knowing your Medication Rights and speaking up if they are not observed can help save you or a loved one from harm, especially in a hospital setting and following discharge.

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Welcome to the Active Patient Advantage

The Active Patient Advantage is a blog that will help keep readers informed about medical issues relevant to managing their healthcare experience,  with valuable insights on how to embrace the new era of “patient engagement”. Forthcoming topics: personalized medicine and you; your hospital stay and patient safety; things to ask your hospital care team–to avoid financial surprises; how to partner with doctors involved in your care; finding and working with patient advocates and health care navigators; and how to know you have found the right doctor.

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