Talking to your doctor about alternative treatments for ALS

Considering the lack of options that mainstream medicine can offer to people with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s Disease), it is not surprising that many people seek out alternative and complementary therapies after their diagonsis. Unfortunately, many physicians do not advocate the use of alternative therapies and often strongly discourage their patients from using them. This leads patients to silently suffer using only mainstream medicine, hide the fact that they are using alternate therapies from their doctor, or stand up to their physician and openly take these therapies against medical advice. This sort of antagonistic situation is not good for the patient/physician relationship, nor is it good therapy.

Understanding your rights

Physicians rarely tell their patients this fact: you have complete control over your own medical therapy. You do not have to accept any treatment that you do not want (if you are legally capable of making your own decisions). Likewise, you are free to choose any therapy that you wish (as long as you can legally obtain it). Sometimes these choices are at odds with the wishes and advice of your doctor. Sometimes doctors may even refuse to allow you to use these treatments—but ultimately it is not up to your doctor; it is up to you.

Respecting your physician

It is usually unwise to make decisions against medical advice. Your physician is acting in what he or she believes to be your best interest using the training that he or she acquired over many years. In most cases, your doctor can be trusted to provide you with reasonable medical treatment. After all, you have sought the advice of your doctor because he or she is the expert in their field. That said, physicians are not infallible and it is reasonable to ask questions.

Questioning your physician

Given the pressures that physicians face today, including trying to see as many patients as possible, you may often feel like it is difficult to ask physicians questions about your condition or your treatments. It is up to you to ask any questions you may have. Do not leave the room until you are satisfied. If you know you will need extra time to ask questions, ask to schedule a double appointment. While you should be respectful of your physician’s time, he or she should also be respectful of your time as a patient and paying client. Empower yourself to ask questions about your care.

Making sense of physician responses

Most physicians practice what is called “evidence-based medicine.” This means that they base diagnostic and treatment decisions on scientific evidence that has been determined in clinical trials or reported by experts in consensus. Physicians are rather good at making decisions based on published studies. They often have difficulty, however, discussing a topic that has not been sufficiently studied. If there has not been a clinical study (or several clinical studies, really) to support a treatment, the physician may be conflicted. The physician is left to make a decision based on past experience and personal judgments. In these cases, physicians who practice evidence-based medicine tend to err on the side of caution and recommend against therapies that have not been tested.

Different types of denial

You physician may discourage you from a treatment for one of four reasons:

  • The treatment has been studied, but there is a better option for you
  • The treatment has been studied and is not appropriate for you
  • The treatment has been studied and is dangerous
  • The treatment has been not been studied in many clinical trials

If your physician is discouraging you from a treatment (or outright refusing to allow you to take it), ask why? Which of these four reasons is it?

  • The treatment has been studied, but there is a better option for you: Is there a better option? If that answer is riluzole, that is hardly a great drug for ALS. While it is the only drug that has been shown to extend life in ALS, it only provides a couple extra months of longevity in most people.
  • The treatment has been studied and is not appropriate for you for you: Why is it not appropriate, specifically? Am I too old? Will it interfere with other medications?
  • The treatment has been studied and is dangerous: If the treatment is dangerous, ask if the side effects are worse than your current medications.
  • The treatment has been not been studied in many clinical trials: If it has not been studied in clinical trials, ask why that means the treatment cannot work for ALS.

Do not be afraid to ask why your physician is recommending for or against a particular therapy.

Hostile physicians

You may encounter a physician who simply refuses to allow you to take a particular treatment. He or she may adamantly refuse to see you if you continue to take an alternate therapy. You must consider this behavior carefully. Again, you have control over what you will or will not take. Bluster is not the same thing being correct. Calmly ask your physician to explain why he or she feels so strongly about the particular treatment. If you continue to experience strong resistance or find a doctor that refuses to allow you to do certain things, carefully consider whether you should find a new physician.

Respecting the physician’s expertise and perspectives

Physicians must keep abreast of a tremendous amount of information to practice medicine. Their milieu is mainstream treatment, and they spend their time learning everything they can about these treatments. Rarely will physicians also be aware of various alternative and complementary therapies. Thus, when they are unfamiliar with the therapy, the simplest response is to reject it. From their perspective, if it has not been tested, it is not true. This is a bias that pervades medicine from medical school, through residency, and into practice. You will not likely be able to change that bias, but you should be able to work around it when it comes to your own care.

Educate your physician

If you feel strongly about a particular treatment but your physician is unfamiliar with it, consider presenting your doctor with high-quality information. Claiming that somebody you know benefited from a treatment is not high-quality information in your physician’s mind. Referencing a report that has been published in a peer-reviewed medical journal would be considered high-quality information. If the document(s) that you present to your physician contains references from medical journals, chances are it is high-quality information and will be welcomed. In addition, your alternative or complementary medicine practitioner may have high-quality resources that they can share with your physician.

Be honest with your physician

It is never a good idea to withhold information from your doctor. This is especially true when it comes to the medicines and supplements you take. Medicines could mean substances that are prescribed, unusual diets, or medicines that you buy in a drug store or online. Make sure your doctor is aware of any substance you put in your body. It is almost always the case that your doctor would rather know about it than not know, even if they disagree with your decision. In fact, it is probably best to tell your physician before starting any new diet or therapy.

Take control of your own treatment

Perhaps the best advice is for you to take control of your own life and medical treatment. Make sure you understand why your physician prescribed each particular medicine. Ask for the treatment plan and ask for alternate options. Ultimately, you are the person who has to live with decisions about your care, so you should be satisfied with them. If your physician is unwilling to accept your input, maybe you need to find a new doctor. Respect the knowledge and expertise that your doctor has, but do not be afraid to probe areas where that knowledge may be incomplete, such as in the area of alternative and complementary therapies for ALS.