9 Steps to Take after Being Diagnosed with a Serious Condition

Screen Shot 2013-11-21 at 1.59.39 PMBy Melissa E. Clarke MD

When patients first receive the upsetting news that they have a serious condition such as cancer, they typically feel distressed. After the initial anger, fear, and sadness, these patients often tell me they feel overwhelmed and lost. They don’t know what steps to take next.

It’s important for patients to feel empowered when it comes to their healthcare. According to a recent study published in the journal Health Affairs, patients who are more engaged in their healthcare have better outcomes than those who are passive (read the study findings here). Making informed decisions will help you meet the challenge of your illness, get good-quality care, and minimize aggravation caused by the tricks and traps inherent in our current healthcare maze.

Here are 9 strategies to follow.

1. Overcome the passive patient mindset.

Your mental attitude going into this health journey determines how well you’ll take care of yourself, respond to setbacks, and be open to new ideas. Start with this statement: “I am not my disease. I am not a ____ patient.” (Fill in the disease.) Don’t be passive. Instead, educate yourself about your condition. Gather a support network of family and friends. And get a mental health checkup if you’re having symptoms of depression.

2. Take control of your lifestyle.

Your nutrition, sleep, and level of stress are all aspects of your lifestyle that are totally within your control. Eat single-ingredient foods, drink 8 ounces of raw vegetable juice daily, include healthy fats, and avoid unhealthy foods and ingredients. Get 15 minutes of sunlight a day for vitamin D. Sleep 7-8 hours per night. Drink a glass of water before each meal and in between each meal. Find a healthy way to cope with stress, such as meditation, yoga, tai chi, or qigong.

3. Create a complete healthcare team.

Learn what skills various healthcare practitioners excel at. Your team might include conventional MDs, osteopathic physicians, naturopaths, integrative practitioners, chiropractors, homeopaths, traditional Chinese medicine practitioners, and Ayurvedic practitioners. There are also alternative caregivers who practice reiki, massage, hypnosis, and cognitive behavioral therapy, among others. The key to having more than one healthcare professional on your team is full disclosure–ensure that each knows the other practitioners and treatments you’re receiving.

4. Screen healthcare professionals carefully.

Don’t get stuck with a doctor who doesn’t serve you well. Know your health plan restrictions to find out if your practitioner will be covered under your insurance. Know the doctor’s medical board qualifications by using the free FSMB DocInfo Profile. Check to see if he or she has received special recognition by checking his or her NCQA record. If you’re picking a doctor for a specific condition, find out how often he or she treats cases similar to yours.

5. Have a functional rapport with practitioners.

A good healthcare practitioner is one who has good listening skills and a capacity for compassion. If other healing traditions are important to you, your main healthcare provider should be open to these as well. He or she should answer questions clearly and completely, and promote shared decision making. If the doctor doesn’t know something, he or she should admit it and refer you to someone else or get back to you with the answer.

6. Be a good patient.

Prepare for each visit by knowing your health history and having a list of medications you take. Bring a health buddy to take notes. Ask questions at your visit so when you leave you can explain to someone else what’s going on with you and what your treatment plan is. Get a second opinion if you’re uncomfortable with the diagnosis or treatment advice. Track your progress.

7. Create a positive hospital experience.

Find a high-quality hospital by talking to your doctor, others with your condition, and by doing research online using a few of the excellent hospital-quality comparison websites. After you’ve found a well-rated hospital, it’s still important to be mindful about the care you get when you enter the hospital. A big problem during hospital stays is poor communication between various caregivers. Take notes and have an advocate who helps you keep track of what you’re getting when, why, and from whom. Be a squeaky wheel, ask questions, and verify protocol.

8. Consider a clinical trial.

Ask your doctor whether a clinical trial may be right for you. If he or she gets incentives for referrals, seek a second opinion from a specialist physician not involved in the trial. To find a trial, check www.clinicaltrials.gov or ask your doctor or a representative from a foundation that focuses on your condition. Talk with the study coordinator to learn details about the study, including who gets treated, who sponsors it, financial costs to you if any, whether you can stay on your current medications during the trial, and whether your insurance will pay for it.

9. Understand the financial side of your treatment.

Get a clear picture from your health insurance representative, your caregivers, the hospital, and the clinical study, if you use one, to find out how much treatments for your condition will cost, how much will be covered by your health insurance, and what portion you are responsible for. This is a complex topic worthy of its own article. The main message is that you should treat your illness the same way you might treat a house renovation. At the outset, know as much as possible about the costs and time frame so you can make the right decisions about additional coverage you might need, or other options for financing your healthcare.

Melissa E. Clarke MD is a Harvard-educated physician for over 20 years, healthcare educator, and patient advocate. Her new book, Excuse Me, Doctor! I’ve Got What?, helps consumers make educated decisions regarding conventional and alternative healthcare practitioners, hospitals, insurance, financial options, and self-care strategies under the new Affordable Care Act.

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