Although this blog generally centers around health economics and policy, an article I read in the New York Times made me want to switch it up today. Let's talk about ethics and optimism. Specifically the ethics of early stage clinical trials and patient optimism.
The article I linked to above, starts with a touching story about a mother in her 30's with cancer. If you have a few minutes, the article is a must read. Aside from being a story about selflessness and courage, it also raises a tough ethical debate about optimism and patient consent.
The woman in the story had been through numerous, experimental clinical trials. The purpose of these early stage clinical trials is often to test the safety of a new drug and not to actually treat the patient. In the story, doctors told the woman exactly that: she shouldn't expect this to benefit her, it was just for the purpose of advancing science. Although the woman confirmed that she knew this...I can't help but wonder if she had at least some hope and optimism about the experimental drug.
I truly believe that optimism is a gift. However, some are debating if unrealistic optimism is an ethical issue in this case. Studies in the article show that patients can be filled with optimism in clinical trials even when only 5 percent of patients see "some" benefit from these trials. Some argue patients are going into these trials without knowing the true purpose them and unrealistically expecting to be cured. When this is not explained clearly enough to patients, it presents an ethical dilemma.
Is there such thing as unrealistic optimism? Do you think having unrealistic expectations is harmful to patients?
Personally, I believe that any kind of optimism can only help in this situation. However, I do believe that every single patient is owed a clear explanation before they enter an early stage clinical trial. Patients need to know that the purpose of the studies they are participating in. They have the right to know early stage clinical trials are strictly about efficacy. If after knowing all of this, a patient still wants to be optimistic, that is an admirable decision that should solely be reached by them.
Your opinion may differ though. Some believe that by realistically explaining this to a patient you are ruining hope and harming the patient. Looking forward to seeing all sides and opinions.
I would have to agree with you Jake. Clinical trials are there for a specific purpose, to test and see some "potential" positive outcomes. However, I don't believe that clearly outlining the purpose of the trial will hurt the patient's optimism.
ReplyDeleteAs you have said, optimism and a general positive outlook and attitude are ingrained. Being honest does not ruin hope as most times, patients would rather not be given a candy-coated prognosis.
Having highly unrealistic expectations is something that can not be helped when it comes to cancer or other deadly diseases. It is a coping mechanism that may make the patient more comfortable and hopeful. Honesty doesn't hurt hope, it fosters it.