Ethics & Informed Consent

–Reference from MedScape

The EPRC believes that these core ethical principles should be applied to making informed decisions about Emergent practices and that there must be scientifically validated knowledge about the conceptualization and management of emergent experiences in patients and emergent practitioners.

While there is some variation among cultures, a key component of most medical ethical systems involves informed consent, where patients are given an opportunity to learn about the risks, benefits, and alternatives (RBA’s) to any intervention, medication, procedure, or therapy.

Regarding the principle of Autonomy, in order for a person to make informed determinations of their course of action, they need:

• reliable data upon which to base decisions, such as the chances of an intervention working and to what degree,
• the various complications or side-effects and the chances of them occurring,
• and alternative courses of action and how those would compare.

This also can be applied to emergent practices. To fully respect the principle of Autonomy, we need good data on the RBAs of emergent practices, but these are rarely available, often biased, and typically not easily clinically applicable.

We propose studies that will specifically fill in gaps in current knowledge regarding emergent practices, experiences, and their effects, such that patients and clinicians can make informed decisions and thus be in alignment with core ethical principles.

“Quite often, ethical disputes result from not knowing all the facts, or not providing all the facts to patients.” -Ibid.

A key goal of this project is to make the relevant facts known.

“Listening skills are an essential part of medical ethics.” -Ibid.

This project intends to take this deeply to heart and listen to patients, clinicians, and others relevant people, being respectful of their experiences, perspectives, and conceptions of what is valuable to each. However, the ear has a hard time hearing things the mind doesn’t know. If clinicians are not given sufficient education about the variety of emergent experiences and effects, then they may have a harder time really hearing what patients are saying and being fully respectful of the relevance of those.

“Tactfulness and respect are also important. A well-constructed ethical decision could be ignored if you have not won the patient’s confidence.” -Ibid.

Given the clinical complexities of navigating a wide range of cultures, religions, philosophies, doctrines, and views, gaining a patient’s confidence when handling emergent phenomena is not only intrinsically difficult, it is made more difficult by a lack of education regarding not only the fact of the range of views but also regarding symptoms and signs that patients might present with.

A clinician who has never heard of anyone ever having experienced what the patient is experiencing is not only going to be less confident themselves, but also have much harder time conveying real confidence to a patient and their friends and family. This is further complicated by not even having standard clinical language to discuss many of these experiences.

This linguistic deficit also impairs scientific inquiry and the communication of scientific results. A well-informed, well-educated clinician is much more likely to have the comfort within themselves about the patients presentation to then maintain sufficient tactfulness and respect to support a successful clinical interaction.

Most patients expect clinicians to be practical in their approach, so this project will maintain that same attitude. That also involves intentionally navigating around some complicated, perhaps currently intractable, difficulties and deficits in knowledge, specifically those of ontology.

We maintain that one need not know exactly what, for example, the reported experience of energetic phenomena “truly are” in order to manage them successfully in a clinical context. There are still many mysteries in clinical medicine and mental health practice, symptoms and signs which do not have well-defined biological pathways or clear causal mechanisms.

While these deficiencies in knowledge and certainty are clearly a source of discomfort that hopefully will lead to good studies to try to elucidate their mechanisms, many poorly-understood conditions can have real value added by a skillful encounter with a clinician who is comfortable in the face of these ambiguities and willing to apply what we currently are able to know about these conditions and what benefits patients who have them.

While many clinicians will have had little to no personal experiences with emergent phenomena, a functional education in the fact of their occurrence and how to add something useful to the patient’s care and experience of them can go a long way to making the encounter rewarding for both sides.

“Getting to a useful ethical conclusion about a specific problem means starting with solid values that most people can accept, such as upholding patients’ health, telling patients the truth, and giving people a choice about being in a medical experiment. These basic values are rarely in dispute.” -Ibid.

“Respecting the patient’s wishes has a practical consequence: Doctors who simply overrule the patient often end up seeing their treatments fail, because patients will probably be fighting them the whole way. Patients who are overruled do not tell the truth. But patients who are in dialogue and negotiation with their doctors are more likely to come to a reasonable compromise—even if it’s one the doctor doesn’t entirely endorse.” -Ibid.

When patients feel that doctors are ignorant of or will judge or needlessly pathologize their emergent experiences, it follows that they will be less likely to seek care for them, or, if they do, they will be less likely to be entirely honest about them.

Thus, having good data on the range of emergent experiences, data on how to handle them, and appropriate training on how to discuss them skillfully with patients will help increase the access, quality, and efficacy of care and improve the value of the interaction for both the patient and the clinician.

It is also essential to keep in mind that many people who report emergent experiences ultimately conclude that the overall process was beneficial and non-pathological, even if in the short to medium term the experiences proved challenging. Thus, we must be careful to also appreciate the opportunities these experiences represent and avoid stigmatizing or needlessly pathologizing them.

Regarding the concept of Justice and the ethical distribution of healthcare resources, capabilities, and costs across societies, the current situation is clearly not equitable. There is an extremely uneven range of levels of comfort, competence, conceptual depth, and capability in healthcare providers and therapists regarding handling emergent experiences and the effects of concern here. These effects are rarely a standard part of medical or mental health education, and so one must rely on clinicians to have acquired these skills through their own life experiences and educational pursuits outside of the educational mainstream. In order to properly serve the ethical consideration of Justice, educational systems must be empowered to provide at least a basic competency in the recognition and management of these experiences and hopefully the provision of at least one specialty and its certifying board that will own these and be able to be referred to for more complicated cases that require additional depths of knowledge and skill.

Regarding Beneficence, doing good for patients, in order for clinicians, therapists and other caregivers to do good, they must have a solid foundation of knowledge of:

• emergent phenomena,
• the risks and opportunities they present,
• how to best manage those risks,
• and how to identify and take advantage of potential opportunities they may offer.

Data on these is slim. Detailed, head-to-head trials of clinical management strategies largely haven’t been done. This project aims to fill in the gaps in both knowledge and management such that the ethical concept of Beneficence can be properly applied and honored.

Regarding the concept of Non-malfeasance, unfortunately contemporary healthcare and mental health services sometimes provide detrimental guidance when interacting with patients presenting with emergent phenomena, with ignorance, bias, misalignment of incentives, and clashes of paradigms and cultures being among the leading causes of harm.

This study aims to:

• help remove ignorance and replace it with practical knowledge,
• help remove bias and replace it with basic competence and respect,
• help remove the misalignment of incentives and replace it with incentives that reward competent, value-adding care,
• and help remove clashes of paradigms and culture by raising awareness of these issues, working to create educational programs, and generating the necessary information to support healthier, more productive interactions.

In short, this project is deeply grounded in and informed by standard ethical principles and putting them into real clinical practice.

If you are interested in more information, please contact us at [email protected]. Thanks!