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Patients Against Lymphoma

 

When Lay Persons Give Medical Advice

Last update: 08/21/2014

TOPICS
 
When lay persons give medical advice

 Why lay persons should not give medical advice
What is the appropriate role of patient navigators? 
 
 Comparing types of medicine:
complementary, alternative, natural, standard and investigational


WHEN LAY PERSONS GIVE MEDICAL ADVICE

It's not uncommon for patients to believe in their chosen approach to treatment, particularly if the outcome was very good, relative to the average experience.

In the case of a proactive patient who uses self-identified strategies, there can be a very strong temptation to credit one's actions with the outcome, which sometimes leads to the practice of giving medical advice to others.  

The rational might be:  "I selected the strategies based on scientific evidence,
and my outcome was excellent.  Therefore, the strategies are proven effective,
and are likely to help others." 



 

Let's examine the problems in this logic:


The patient selects the strategies, 
which are reported to be based 
on scientific studies.

 

The first question to ask is if the research cited by the lay person is preclinical * or clinical? 

* Preclinical:  it's well known that cells put in Petri dish or transplanted into animals are very poor models of the behavior of the tumor cells that originate in the complex environment of the human body.  The tumor itself changes when removed from the body and will often die spontaneously in this artificial environment.

Commercials for herbal products will sometimes cite scientific articles that describe the anticancer activity of their products, but many times omit or fail to emphasize that the evidence is based on preclinical cell culture experiments.

Cell culture experiments cannot account for how the compound is changed by the body, or merely excreted by the digestive processes.

Consider that only 1 in 5,000 compounds tested in cell cultures experiments are even tested in humans. 


The outcome of the patient is reported as being better than average 

Survival beyond the average or median * is not considered evidence - no more than a person who smokes all of his or her adult life without getting lung cancer is evidence that tobacco use is safe. 

The average or mean is a middle point along a continuum of what's possible. Many patients will do better than the average using a variety of approaches.  

The median is a calculation of the middle that informs about trends for large groups, it does not inform about how effective a treatment or life style strategy is for an individual.

Notably, the natural history of indolent lymphoma is quite variable. For example, as many as 20% to 30% of patients will experience regressions at some time in the clinical course of their disease." 1  The range of survival for indolent lymphomas is also quite wide.  You can live 3, 4, 10, 20, 30 years, or more.  

Consider that when a practitioner prescribes an alternative protocol for 100 patients with indolent lymphoma, as many as 30 are likely to experience improvements, because of the natural history of the disease as described above.. This "effect," - which has a good probability of being unrelated to the practice - will often result in strong belief and promotions, as in: "How can you argue with success?"  

1 The natural history of initially untreated low-grade non-Hodgkin's lymphomas. N Engl J Med. 1984 Dec 6; 311(23): 1471-5. PMID: 6548796

The layperson concludes the 
strategies are proven 
effective for the patient.

This is a  false conclusion. The patient could have done as well, or better, with another approach.

The layperson concludes the strategies are likely to be effective for others. 

This is based on a false assumption. It also does not take into account that each lymphoma (even of the same type) can be biologically and clinically unique. 

The patient's experience with a treatment or life style strategy cannot inform about how many others will have no benefit, or may be less better off.  

To find answers to questions about the clinical benefit from treatment or life style practices requires controlled clinical trials. Testimonials and single case reports cannot be considered scientific evidence.

The layperson concludes that there is no harm when the treatment 
or life style strategy is safe.

This is not always true.  A strong belief in an ineffective intervention can do harm, even when the intervention itself is safe.  For example, when a patient postpones therapy too long, or turns down an opportunity to cure the disease early, based on the belief that an unproven approach can control the disease. 

Is it encouraging that an individual does well with lymphoma?  Of course. But one person's experience can only tell us something about the range of what's possible. It doesn't and can't inform about what practice, if any, led to the outcome.

Wendy S. Harpham, MD (NHL survivor) writes: 

"Patients who don't understand the difference between information based on theory, anecdote, historical analysis, or double-blind placebo controlled studies are making ill-informed decisions, believing alternative therapies are safer or more effective when they are not. Even patients who presume that alternative therapies are ineffective may use them. Why? When faced with a life-threatening disease requiring highly toxic treatments with no guarantees, or when dying because there are no effective conventional treatments, it takes guts to reject something or someone claiming to be able to save you, just in case you might be wrong."  

~  amcancersoc.org

For more reading on this subject: Finding and Evaluating Online Medical Information PDF



WHY LAY PEOPLE SHOULD NOT DISPENSE MEDICAL ADVICE:

It's inappropriate for lay persons to recommend and actively promote medical practices (standard, investigational, or alternative) as recipes for survival to other patients for the following reasons:  

(1) Each lymphoma (even if of the same diagnosis) can be unique clinically, such as: 
growth rate, sensitivity to treatments,  location near vital organs, bone marrow involvement, and so on.

(2) The biology of the lymphoma and the patient can have unique characteristics that will result in very different clinical courses, and responses to the same treatments.  For example, normal genetic variations in an individual's immune system may influence the response to Rituxan. 

(3) Each case can be unique, such as the patient's age, general health, symptoms, blood counts, treatment history, risk tolerance, secondary medical conditions, and access to therapies.

(4) By definition, lay persons are not medical professionals and are likely to have gaps in knowledge.

(5) Even a medical professional will not, and ought not, dispense medical advice without directly examining the patient, and having access to the complete medical history, the details of the diagnosis, the most current lab results, imaging reports, and so on.

The clinical judgment of trained oncologists, and the specialists we consult, are essential to the treatment decision process. Ideas or suggestions by lay persons may be considered of course ...however, at best, these should be considered merely starting points for discussions with your doctors. 




WHAT IS THE APPROPRIATE ROLE OF PATIENT NAVIGATORS?

Patients do have a lot to offer each other, including mutual support and encouragement.  Having gone through the medical system, patient navigators may be able to help new patients to locate credible sources of information on a variety of topics: 

bullet

the disease and its treatments - 
     understanding the basic terminology and concepts

bullet

locating centers and specialists,

bullet

locating clinical trials,

bullet

finding financial support, 

bullet

getting help with insurance,

bullet

locating transportation resources,

bullet

arranging childcare during scheduled diagnosis and treatment appointments, 

bullet

coordinating care among providers, 

bullet

translation/interpretation services for minorities, 

bullet

coordination of services among medical personnel, 

bullet

how to prepare for consults with medical doctors, prepare documents and questions

bullet

How to evaluate medical claims and data ...
the strengths and weaknesses of online medical information.

When asked  for opinions about clinical decisions responsible patient navigators will underscore the limitations of the information they can provide in informing the path others should take.     

 


Comparing Types of Medicine


Complementary Medicine:

Changing your life style in reaction to a diagnosis of lymphoma is most likely considered complementary practices. Clearly it's both sensible and beneficial to eat healthy foods, to exercise routinely (within your limits),  get adequate sleep, and so on. Good performance status is correlated with improved survival in lymphomas. However, at this time there is no evidence that exercise, diet, or herbs can directly affect the course of the disease.

Alternative Medicine:

By definition, alternative practices are non-mainstream substitutes for standard medicine that are based on insufficiently- or un-tested, theories. Taking reasonable doses of vitamins and herbs during watchful waiting, for example, would not be considered alternative medicine, unless you were taking very high doses (IV vitamin C for example), or an herb with known toxicities (ie., apricot kernels) because of a belief that the benefits may outweigh the risks. This use would be more like taking drugs without a prescription. We think it's fair to say that profit motive is often behind many promotions of alternative practices; but sometimes these practices are promoted by individuals who believe that they have benefited from the practices.

CAM stands for Complementary and Alternative Medicine. 

While often lumped together, these are very different entities and approaches to illness. The goal of complementary practices (such as yoga, acupuncture, meditation, etc.) is often to improve general health and quality of life, which is almost always reasonable. 

Recommending or using alternative medicine can range from irresponsible/foolish/criminal ... to reasonable, depending on the type of cancer and what standard medicine has to offer as treatments. (For lymphoma - a lot!)


Natural (herbal) medicine:  

Natural or herbal medicine may be used for alternative or complementary purposes. It's common to associate "natural" with safety.  But plants often produce powerful poisons in nature in order to kill, or to avoid being eaten by animals and insects, some of these compounds may cause illness, others may become useful drugs,  when purified, and tested in clinical settings; other natural compounds are carcinogens (capable of causing cancers). Problems with the evidence on many natural supplements include:

bioavailability (or pharmacokinetics) - how the body changes or excretes the compound, where the compound tends to go, the half life, and so on, which affects blood levels and the potential to have therapeutic effects on the cancer cells.

limited evidence of efficacy - generally the evidence is limited to cell culture and animal experiments. Cell culture experiments in particular are very poor models for what happens in-vivo (inside the body).  Cancer cells are changed by simply removing them from the body, and many times cancer cells will die spontaneously in cell culture, without adding any therapeutic compound. 

dosing - generally information about the dose needed to cause an effects seen in an animal or cell culture study is not supplied by those who market it. An effective dose could easily be a toxic dose, even for natural medicines.  Taking some kinds of supplements in high doses is not unlike taking prescription drugs without medical supervision. 

Natural Medicine - science blog: (scienceblogs.com)
 

"It isn't very surprising that plants contain anti-cancer chemicals; they have being fighting a biochemical war against the world's animals for approximately 300 million years (land plants, anyway..) and have hence evolved chemicals that probably interfere with virtually every biochemical pathway that exists. Hence it is very likely that there are chemicals out there that interfere with those chemical pathways crucial to the survival and proliferation of cancer cells.

However, this does NOT mean that 'natural is best'. First, the compound in question will only fight cancer as a secondary effect to it's primary purpose (killing an insect that feeds on the plant, for instance). Hence a synthetic derivative may be far more effective. Second, the compound may be too unstable in vivo, so again a synthetic derivative will be more successful. Thirdly, useful dose ranges (between ' no effect' and 'killing the patient') may be quite narrow, making direct consumption of leaves/bark/etc either ineffective or highly dangerous or both.

In short, the 'big pharma' versions of these 'natural' drugs are going to be more effective. That does not mean that all information from these companies should be taken uncritically at face value - you should always look closely and critically at the real data supporting the claims made. However, at least this is possible. With alternative 'cures', all you get is the marketing.   


Standard Medicine:

Medical care received from licensed doctors using the standard of care - therapies or agents approved by FDA based on evidence from clinical trials - or so-called empirical evidence that has undergone peer review The quality of standard medicine can be uneven, depending on where you live, the type of insurance you have, the experience and qualifications of your doctor, etc.


Investigational Medicine:

New therapies or new uses of standard therapies, received during participation in a clinical trial  sponsored by drug companies or the National Cancer Institute.  Importantly, study protocols are reviewed carefully by the FDA and IRB (institutional review board) in order to protect participants.  In early phase trials, for example, very close monitoring is required.

The risks and potential benefits in taking part in a clinical trial can vary significantly.  Sometimes investigational agents can be safer than approved standard drugs. Sometimes patients will enroll simply because they have run out of options and need to try something new.  Not every trial is for testing new agents.  Sometimes, a study will evaluate the combination of approved drugs, such as Rituxan with Gm-csf (leukine), or new dosing, combinations, or sequences of available agents with the goal of improving on the standard of care.

Karl Schwartz
President, Patients Against Lymphoma

 
Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
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