One of the big concerns among scientists – including many at the International Society for Stem Cell Research (ISSCR) conference in Vancouver, Canada – is that patient expectations about stem cells are often greater than researchers are able to deliver today. That can result in patients in search of a cure heading to overseas clinics that offer unproven therapies.
Megan Munsie – head of the Education, Ethics, Law and Community Awareness Unit at the University of Melbourne in Australia – wanted to find out what happens when patients’ hopes for new treatments come into conflict with scientific views on medical evidence. So she started with a small survey of 16 Australians, patients and patient-caretakers, who had travelled outside Australia for stem cell treatments for a variety of diseases including MS and cerebral palsy.
She says there were a number of interesting findings:
- They all considered themselves pro-active and well-informed
- They rejected advice from their own doctor but instead relied on the overseas doctor selling them the treatment for advice
- They felt they had no choice but to travel overseas because they were running out of time and options in Australia
- They didn’t consider the health risks, believing that the worst that would happen is that the “treatment” wouldn’t work and they would have spent a lot of money for nothing
Perhaps the most surprising finding was that all of them talked about the “benefits” they gained from going abroad for the treatment, that it gave them a sense of hope even if there was no evidence of medical benefit.
This led to a bigger study where Munsie surveyed patients and patient advocates but also stem cell scientists and physicians. Not surprisingly the researchers had a very different view of the subject than the patients.
Researchers/doctors said they felt that patients don’t understand science and don’t appreciate the subtleties of clinical trials
- They said patients were basing their decisions not on science but desperation
- They considered overseas providers as dubious, selling hope and taking advantage of a vulnerable patient population
What was interesting, however, is that many doctors said they didn’t try to persuade their patients not to go, instead they chose to respect their autonomy but did at least try to give them the facts so that they could make a decision based on knowledge not ignorance.
When asked why they didn’t tell patients not to go, they said they respected the patients’ need for hope and didn’t want to take that away from them because they had nothing they could offer to replace it.
Munsie says recently some doctors have started offering these kinds of unproven therapies in Australia. She talked to four of them asking how they could justify it. All four said there is a huge unmet medical need and it was better to offer these therapies in Australia than have patients travel to other countries for them. They also said that they felt competent to provide treatment because they had undergone some kind of training or had a license to use equipment needed for the therapy.
Ironically while they all considered themselves legitimate providers of a needed medical therapy – albeit an unproven one – and only interested in the science, they regarded others doing the same as “cowboys” and only interested in the money.
When asked if they would support more regulation of the kinds of therapies they were already offering they said yes, saying that the other doctors who claimed they were “self-regulating” is like “giving the keys to the asylum to the lunatics.”
Munsie says it’s clear that it’s not just patients who could benefit from some guidance on expectations about stem cell therapies.
She says we need to do a better job of managing patient expectations without robbing them of a sense of hope, perhaps by offering them information that is more tailored to their particular needs.
We also need to manage what she called “the unbridled enthusiasm of providers” who are offering speculative treatments as “medical practice”. That might take regulatory change by the government.
She says it’s difficult to strike a balance between hope and scientific evidence, in maintaining a patient’s sense of optimism while acknowledging the reality of the science and the risks posed by unproven treatments.