Your worst nightmare has come to pass. You have been given a diagnosis that has left you in a state of shock. Did you hear correctly? Did the specialist really tell you that there is nothing that they can do for you? You are driving home, but you are on automatic pilot.
You remember back to last year when you began to feel unwell. Nothing very specific, just a general malaise. The general practitioner could find nothing wrong and so you didn’t insist on further investigations. The headaches became progressively worse and now this.
Each day, many people will face just this type of scenario. Diagnoses are given in as caring a manner as possible, and yet the life, which days before was taken for granted, now seems fleeting.
What does one do when one has reached the end of the road with current medical science? What do patients do? What do their doctors do?
In the case of patients, they must obviously seek second, and maybe even third and fourth opinions to make sure it really is the end of the road for them. They must make sure that a correct diagnosis has been delivered by the appropriately trained and experienced specialists, on the basis of properly and thoroughly conducted tests and evaluations.
If it really is the end of the road in terms of currently available medical treatments, there may be opportunities to take part in clinical trials which may offer some hope. In a situation like the one cited above, the type of clinical trial that would be best must be carefully considered.
Patients looking for options to save their lives may be easily misled into taking part in clinical trials for unproven experimental drugs. There are many ways that they can be inadvertently influenced to sign up for inappropriate (for them) clinical trials. The enthusiasm of the young doctor running the Phase 0 dose finding study, could lead them to believe that the experimental drug is the next best thing since sliced bread. What’s in it for the investigator? A nice publication and perhaps a promotion. What’s in it for the sick patient? Likely, not very much except a contribution to medical science and the knowledge of how the drug behaves at the dose that at they would be administered.
What advice would I give to our fictitious but sadly realistic patient in the nightmare:
- Get as many good opinions as necessary, as quickly as possible before giving up hope
- Get the second opinions in as unbiased a manner as possible. This should be done in a blinded manner so that the second doctor is unaware of the first doctor’s diagnosis.
- Find appropriate clinical trials if currently available treatment will not be able to help in your situation
- Don’t be swayed by the enthusiasm of an investigator to take part in a clinical trial.
- Ask the right questions to determine if the clinical trial is best for you.
- Ask for data from other patients that have already taken part in, or are already enrolled in the clinical trial. For instance:
a. What types of side effects and adverse events have been observed?
b. Has anyone died during the study?
c. If the answer to B is yes, were the deaths considered probably related to the study drug?
Evaluate your options carefully. Discuss them with your physician(s) and family. Many people are alive today that were told that they only had days, months or years to live, so never give up hope.
Dr. Speid is a UK registered Pharmacist. She is the author of Clinical Trials: What Patients and Healthy Volunteers Need to Know. It was published by Oxford University Press in 2010, and is available at bookstores, online (Amazon.com/Barnesandnoble.com) and on Kindle and other electronic readers.
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