Medical Tourism Presentation Week

We witnessed a terrific set of case studies about medical tourism for different procedures this week. Among the topics, we heard student presentations about BIID amputations, Swiss rejuvenation clinics, ips cells for macular regeneration in Japan, stem cell therapies in Russia, three-parent IVF with mt-DNA in the UK, gene therapies in China, kidney transplant in Iran, hip resurfacing in India, and more.

At the end of class, I mentioned what we might want to reflect on this week: hope. What role does hope play in medical practice and the impetus to medical tourism? What role should it play? Hope isn’t always prudent or practical: how do you make sense of hope and balance hopefulness with sometimes-less-hopeful impulses? How do you think patients think about hope, and is this different from the hope of medical researchers and of medical practitioners?

7 comments:

  1. Hope is the driving force that brings patients to doctors because they believe the doctors have the ability and the means to bring about healing and return to normal or at least adequate function. When patients have no hope that their doctors can resolve their issues due to inability, refusing to listen or lack of funds, they turn to online sources and finding communities that can link them to a means of relief. As our world is shrinking and travel is easier than ever, people are turning more and more to doctors in other countries who promise relief.
    It is our responsibility as researchers in the biomedical field and the responsibility of doctors to educate patients, so that they can judge what the read to be factual or not. Otherwise, people can be fooled into believing anything from unscrupulous people who want their money and refuse to believe those who do have their best interests in mind but can only promise partial relief instead of a cure. Most importantly, patients must be educated to know the risk vs. benefit analysis, so no matter what decision they make regarding treatment, they fully understand what they have chosen.
    This will help patients have a factual hopefulness and to channel their energy into means that will help them or if it is unlikely to come in their lifetime, to give their time/resources, etc. to help others that may suffer from their condition.
    Medical practitioners often think of hope as constrained by the boundaries of medicine and research, what has factually been proven. All else is an unknown landscape that we are very cautious about discussing let alone recommending. Patients think of hope as hidden somewhere in the world if they can only talk to the right people or find the right resources. Trust is key to patients believing their doctors and instead of thinking their doctors are only protecting themselves from lawsuits and do not have the patient’s best interests in mind. We must listen to patients who are desperately seeking relief from their conditions and present information objectively as well as risks/benefits of treatments not yet tested in research to inform them but allow them to make the final decision.

  2. Hope is defined by a feeling of expectation, desire for a certain thing to happen. In all facets of life, not just the medical industry, hope drives people to do things even when they know that there might be risks. The investor may put his life savings into a stock that he hopes will rise, while a couple may travel to the UK for three-parent IVF in the hope that they will have a healthy child. Hope also spurs people on to keep on going. Even when all options have been exhausted, if there is hope people will look for alternatives. For the medical industry, one individual is sick but all the people involved from family members, to medical practitioners to developers of novel treatments have hope.

    During class I thought that the people seeking medical tourism must be desperate. However desperation is defined by a sense of hopelessness; that a situation is so bad it is impossible to deal with. Therefore, by definition desperation cannot be a driver of medical tourism, if medical tourists were desperate they may lack motivation and do nothing. The urge to travel into the unknown is driven by hope, the desire that your situation may improve if you have a particular treatment.

    Medical tourism may not only be driven by the sick individual, but also by the hope or hopelessness of the people around them. Family members may hold more hope than the patient themselves and be able to spend the time researching alternative treatments overseas. If the medical professionals treating the patient believe that treatment in the country of origin is hopeless, then it may drive the person to seek alternative means of therapy given the disparity in “hope level”. Essentially, medical tourism is not driven by patient hope alone, but also hopelessness within the medical sector in the country of origin.

    Hope is important for the medical industry. If there were no hope then no one would seek treatments because all treatments have risks. It is appropriate and essential for the patient to have hope but it is the medical industry’s role to manage patient hope. Medical information can be given in a positive light to give false hope and pessimism can develop when information is given in a negative light. Practitioners may inspire different degrees of hope by the way they talk and act when they give information, in this way they seek to balance hopefulness with desperate impulses.

    It is generally accepted that practitioners need to be impartial and to offer patients information in a way the patient will understand. Patients need to understand all the treatment options and percentage ranges of success. A close relationship between patients and medical professionals is important because part of managing hope is to support the patient emotionally and have them trust that the practitioner is doing everything they can do to help. In the event that patient hope inspires them to seek medical tourism, a close relationship may enable them to talk to their practitioner about it. In this event, it could help for the practitioner to be open to discussion and research so that they can better guide the patient’s decision.

    Each individual has a different hope profile, just as the hopes of patients, practitioners and medical researchers differ. Some people take positive medical results and extrapolate them beyond what are, some do the same with negative results and become pessimistic, and some take results and do not think that it means anything at all. The difference between patients and practitioners is that practitioners are often conservative in their hope, many have experienced a patient respond favorably before, only to crash the next day. For practitioners, hope is a double-edged sword; they hope their patient will do well but at the same time want to avoid giving false hope.

    The hope profile that an individual develops is often influenced by relationships either with other people or with a particular goal. Human relationships between family members or practitioners and the patient result in hope for a patient to regain health. When direct human relationships are not involved, a goal can be the driving force for hope. For example, medical researchers have hope that a treatment they developed will be favorable as to benefit a population. The similarity in all situations is that there is an investment of some kind and a variable outcome.

    Overall, hope takes on many different forms when it comes to the medical industry. When hope drives patients to consider medical tourism it is the relationship with a trusted domestic health provider that can manage the outcome. As medical practitioners, it is not up to us to dampen hope completely, after all, a hopeless life is one with no motivation to live.

  3. In terms of deadly diseases and treatment, hope is closely linked to desperation. We talked about desperation in class this week, and I think there is a strong correlation between the two. Let’s say there is an experimental treatment in a different country for a fatal disease, and two different patients in the United States. The experimental treatment may or may not work, but several online posters have raved about the treatment. The first US-based patient is taking medication that slows the progression of their disease, but they will still die. The second US-based patient is taking the same medication as the first, but it is not working to slow the progression of their disease and neither are any other treatments available in America. Each patient is likely to see the experimental treatment as a sign of hope for a cure to their disease, but the second patient is more desperate than the first and therefore more likely to travel for the experimental treatment.

  4. Hope can play both a positive and a negative role in the medical world depending on the basis for the hope. For medical tourists, a foreign “miracle cure” offers the hope of longer life and health when all other resources are exhausted. Patients facing the end of life often reach out for any treatment that promises to help their pain, no matter the expense or unknown side effects of the treatment. In this sense, hope plays a negative role—promising more than may actually be delivered. However, hope serves a very positive role in the research world. Without the hope of curing disease and injury, no research would be done and no treatments would be developed. This is the role hope should play in medical practice: hope for successful treatments drives researchers to study disease and hope for relief drives patients to doctors equipped to help them. Even the “hope” of pharmaceutical and research suppliers for a profit can serve a positive purpose when it drives these companies to fund medical research which will eventually help patients.

    Patients definitely think about hope in different terms than most medical researchers/practitioners. Many patients go to doctors, try experimental treatments, or travel overseas for medical tourism in the hope of making their condition disappear. They want to return to a normal, healthy, pain-free life. However, while perfect health is the end goal for medical research, most researchers and medical professionals realize this is not a realistic goal in the short term. Current medical treatments (both traditional and regenerative) are capable of reducing pain and increasing function, but most treatments cannot completely return the patient to the original state of health. As Dr. Theus mentioned last week, most researchers working with spinal cord paralysis work towards the goal of increased function for patients rather than complete and immediate recovery. Still, the hope for a better life urges people to keep reaching and working in spite of obstacles, and this drive results in more and better treatments for disease. Hope is the motivating force behind all medical progress. As researchers, we need to continue to pursue our hope for growth while keeping a realistic basis for our hope.

  5. Hope is an expectation about something to happen in the future. In the context of medicine, hope is usually the expectation of getting an available, appropriate treatment and becoming well. For patients who need regenerative medicine, they usually have some conditions that cannot be treated with existing therapies, while most of regenerative medical therapies are at the research or clinic trail stage. Or there are some other kinds of difficulty to access therapies, such as unknown result or legal restrictions in different countries. In this sense, patients need to take their risk when finding and receiving treatment. However, for some patients, the therapy is their only hope, especially when they suffer from serious diseases. The “hope” of getting treatment makes them tend to underestimate the risk and expect a miracle. In other words, they have hope so they seek treatment; if there is no treatment, they will convince themselves accept much uncertainty in order to get one. They have hope, but probably they don’t think they have choice.

    While patients care about their hope to be cured, researchers care more about the hope of getting knowledge that can develop treatments, and practitioners focus more on the hope of applying a therapy, which contains the information of effects and side effects of a treatment. They are all chasing for good medicine, but their targets are slightly different. In the past, the difference caused some conflicts and even some tragedies, such as syphilis research in Tuskegee in the 20th century.

  6. In several cases hope is a driving force for a treatment outcome or medical advancement. A patient hopes for an opportunity to have a kidney transplant in say, the middle east, another patient suffering from cancer hopes to be accepted as a candidate in a clinical trial testing an experimental drug. Hope drives entrepreneurs to invest in technologies that have the potential to advance the current standard-of-care. In these cases hope provides a positive impetus. When we invest in research on regenerative medicine for example, we target superior therapeutic outcomes than those obtained through surgical intervention. However, hopefulness is an expectation and as educated individuals, expectations much be managed. When we travel to say, Japan to receive stem cell therapy to treat a degenerative disease, one must question the reason why such treatments are not available on a larger scale. Are regulations in said country rigorous enough to not permit medical treatments without thorough safety and efficacy tests? Are regulatory authorities biased towards particular scientific endeavors in tune with the country’s economic or commercial advancement? What are the opinions of practitioners and researchers on said treatment in different regions of the world, and so on and so forth.
    Whether practitioners and researchers are less hopeful or more optimistic than patients is a relative question, depending on the scenario, their backgrounds, current practices in their respective countries and commercial interests. Any of these factors could create hopefulness in particular scenarios regardless of the occupation. Experience though is a strong predictor of calculated optimism. Through experience, one can learn how much hopefulness can lead to fruition, and how much can result in loss.

  7. Hope is a strange thing. It is simultaneously the thing that can keep us going during difficult periods of life, be they medically-induced and related to RM or otherwise, and also the thing that can tip us into hype and decisions based on claims that might be spurious at best. The dangers of falling into the hype of hope are well-documented. We discussed recently the death of Jesse Gelsinger, but there is also Jess Ainscough, known as the “Wellness Warrior” who eschewed (gesundheit) the normal medical course of treatment for her epitheliod sarcoma opting instead for “natural healing” including coffee enemas and other therapies. The hope that she spread was one that reduced the very real unpleasantness of modern radiation- and chemotherapy. She wrote books, sold cookbooks and cooking supplies that promoted “natural” wellness and from all appearances had a large following. On February 15th she succumbed to her cancer. One wonders how many others have followed her hope in the hype of “natural” healing. And while modern medicine certainly does not have all of the answers, and I remain critical of many of the normative values that pervade the system, I do not think that following hope and hype to the exclusion of evidence is a wise decision.

    This, of course, relates well to RM and some of the claims that are made in the media about the possibilities of stem cell and gene therapy treatments. This hype can lead to the medical tourism we all presented on. Many of us presented on tourism to places where the medicine was probably pretty comparable to treatments available in the US, only cheaper. However, some therapies offered in other countries (and the US as well) use the buzzwords of TE/RM to promise beyond their ability to produce, and can subject their patients to significant danger. This danger is the other edge of the Hope blade.

    In the US, it can seem like there are all of these stem cell and other RM treatments that exist, but are just hung up in FDA limbo. So, when people see what sounds like a similar treatment elsewhere, the hype and hope can become confounded with fuzzy definitions and understandings of the science and lead people into very dangerous situations. I understand the need to foster excitement about TE/RM, because public desire often drives funding dollars, but there is also a necessary level of caution that must be exercised by scientists, science communicators and the media when it comes to bleeding-edge therapies in the TE/RM world. I don’t claim to know where we need to draw lines of rhetorical limits, but it is something that we should be thinking about every time we read a story in the media, and when we speak to others about our research.

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