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Special Book Excerpt From The Take-Charge Patient (Part 4 of 4)

Part IV: How to Decide on a Treatment Plan

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View Part 2 of 4
View Part 3 of 4

Take Charge Patient
When faced with a treatment plan, you might feel an urgency to jump right in. This is perfectly understandable, but unless there is a medical necessity for starting the plan immediately, take a moment to reflect on it. You’ll want to get a second opinion from another specialist, do your own research, talk about the options with your doctors and loved ones, and find out as much information as you can before you make a commitment.

Research the Proposed Treatment Plan
Research the proposed treatment plan on credible websites and discuss it with your doctor, other medical professionals, your loved ones and other patients who have gone through the same treatment. The more you know about a treatment, the more confident you will be as a patient. Knowledge is the best antidote to helplessness. If you are not comfortable with researching, ask a loved one or friend to help you.

Please remember that anyone can create a website. Not all information on the internet is credible, and some of it can be downright scary. It may be tempting to simply Google your disease. Try to refrain from doing this. Ask your specialist to refer you to websites she believes have information that would benefit you. Ask her for handouts and names of books.

Weigh the Benefits and Risks of a Treatment Plan
When presented with a treatment plan, you must decide whether you can follow what the doctor is suggesting. You must weigh the risks and benefits and how it will affect your quality of life now and in the long run. Ask if any of the treatments have lasting side effects.

You’ll want to ask:
What does the treatment consist of?
What will I be going through?
How long will it take and how often will I receive treatment?
What are the side effects? Are any long lasting or permanent?
Will I need extra care at home?
Will I be able to work?
What are the costs of this treatment?
Will my health insurance cover the cost?
And more…

Get a Second Opinion
Even if you have complete confidence in the doctor who is proposing a treatment plan, get a second opinion from a doctor with the same specialty. Seek out a board-certified physician who is affiliated with a medical school and who specializes in the disease or medical condition you have.

“Laura, my best friend of thirty-eight years, had stage-four terminal breast cancer. She was put on the chemotherapy drug Taxol. Tragically, she was not informed of the side effects of this drug, which included permanent neuropathy (painful tingling, burning and numbness in the feet). Her oncologist, who was on staff at a renowned teaching hospital, was out of the office for seven weeks due to back surgery. In her doctor’s absence, a nurse practitioner (NP) was following her and many other patients who were getting chemo. Laura reported her side effects to the NP after her second treatment and continued to tell her that she was experiencing tingling, burning and numbness in her feet. The nurse ignored her symptoms and didn’t report it to the physician overseeing the chemo patients. The neuropathy continued for the next six weeks, in which time she had three or four more doses of Taxol.  Upon her oncologist’s return, he realized Laura had neuropathy and immediately stopped the Taxol. The chemo-induced neuropathy was irreversible and there was no treatment for it. Laura tearfully told me, ‘I had stage-four cancer and did not have the energy to challenge that nurse. I was in pain. I also had no idea the neuropathy would be permanent.’ Laura died one year later. During the last year of her life, she had agonizing, debilitating pain from the neuropathy. As a result of the nerve damage and muscle weakness from the neuropathy, Laura was off balance and lost the ability to walk properly. She couldn’t feel her feet touch the ground and could only walk using a walker. She became more depressed and couldn’t sleep because of the severe pain and constant tingling, burning, and numbness in her feet.”
Carol, Friend of the Patient, Baltimore, MD

Use Support Groups to Gather Information
“Because I have three cancers and Alpha-1 (Antitrypsin Deficiency, an inherited emphysema that causes lung disease) I am very active in support groups. I go to national conferences on Alpha-1. I formed a support group for Alpha-1. I go to all the educational meetings so I can to stay on top of the research.”
John O. Will, Patient, Horsham, PA

Whether online or in person, find support groups with members who have the same disease or medical condition you have. If you aren’t a group type of person, at least consider communicating with other members to gather information.

Talking with other patients who are dealing with your medical condition is very important for many reasons. You can learn about treatments that are available and which are working for people. Members might share their opinions about the best specialists and how to find them. You might also hear about what eases certain side effects you are dealing with. In addition to providing essential information and possibly a different perspective, support groups can be a source of comfort.

Ask About Alternatives to Treatment
Even if you are fairly certain you want to commit to a proposed medical treatment, it is wise to ask about alternatives. You may not have considered other options. Learning about other options for treatment will benefit you in two ways: You might feel even more committed to your proposed treatment or you might find alternatives that are better for you. Always ask your PCP and specialist for their opinions on any other options you consider.

Consider a Clinical Trial
“Clinical trials are generally considered to be biomedical or health-related research studies in human beings that follow a pre-defined protocol. ClinicalTrials.gov includes both interventional and observational types of studies. Interventional studies are those in which the research subjects are assigned by the investigator to a treatment or other intervention, and their outcomes are measured. Observational studies are those in which individuals are observed and their outcomes are measured by the investigators.”
From clinicaltrials.gov

Participants in clinical trials gain access to new research treatments before they are widely available and obtain expert medical care at leading health care facilities during the trial.
Depending on the kind of clinical trial being conducted, the research team includes doctors and nurses as well as social workers and other health care professionals. They work closely with the participants throughout the process. Participants follow specific instructions and are monitored carefully during and after the trial.

Discuss Clinical Trials with Your Doctor
At an office visit, ask your doctor if a clinical trial might be right for you. Your doctor knows you and your medical history. She can help you make an informed decision. Ask your doctor to help you get information about clinical trials and formulate important questions to ask prior to joining a clinical trial. Ask your doctor how to connect with other patients who are participating in clinical trials, such as through online forums or groups.

Steps to Finding a Clinical Trial
Ask your PCP, specialist or nurse (or all three) if there is a clinical trial that might be right for you. Health care professionals have access to medical journals and online databases that provide information on clinical trials.

Ask family members or friends to help you conduct a comprehensive search of clinical trials you might qualify for.

Check a reputable disease website for a list of current clinical trials being conducted.

Call local clinical research centers that specialize in your medical condition to obtain information about clinical trials. Research centers usually have websites and may be linked to academic health centers.

For more information, such as important questions to ask about clinical trials, please go to http://www.clinicaltrials.gov

If you join a clinical trial, you should continue to receive care from your primary care physician or specialist.

Resources for Clinical Trials:
http://www.cancer.gov/clinicaltrials/
http://www.clinicaltrials.gov/
http://www.searchclinicaltrials.org/

CHECKLIST: Resources for Your Serious Illness
or Chronic Medical Condition

Find a patient advocacy organization, disease organization or medical society dedicated to your medical condition or disease. Find groups of people, either online or in person, who share your disease or medical condition.

Many doctors said that these are very helpful for chronic diseases such as diabetes:
American Cancer Society
http://www.cancer.org/

Cancer Support Community
http://www.cancersupportcommunity.org/

The Lance Armstrong Foundation
http://www.livestrong.org/

Patient Access Network
http://www.panfoundation.org/

Patient Advocate Foundation
http://www.patientadvocate.org/

PBS.org—Who Cares: Chronic Illness in America
http://www.pbs.org/inthebalance/archives/whocares/resources.html

Stanford School of Medicine Chronic Disease Self-Management Program
http://patienteducation.stanford.edu/programs/cdsmp.html

Patient Checklist

  • Do I have an advocate?
  • What will I ask my advocate to do for me?
  • Have I created my primary and secondary support system?
  • Do I need the support of a therapist?
  • Did I look into joining a support group?
  • Did I develop a support network?
  • Is my health file up to date?
  • Have I started my medical journal?
  • Have I researched a specialist?
  • Have I created a list of questions for the specialist?
  • Have I researched my diagnosis?
  • Have I researched my treatment plan and asked my doctors about benefits and risks?
  • Does my health insurance cover my medical treatment?
  • Did I talk to my primary care physician about my diagnosis and treatment plan?
  • Did I get a second opinion?