Open Journal Systems

ETHICS AND BIOETHICS

Received: March 9^th 2015

Accepted: March 12^th 2015

Terminology in clinical bioethics

Benjamín Herreros,^a,b Beatriz Moreno-Milán,^a,c Eloy Pacho-Jiménez,^a,b,d Diego Real de Asua,^a,b,e Ricardo Andrés Roa-Castellanos,^f Emanuele Valenti^a

^aInstituto de Ética Clínica Francisco Vallés, Universidad Europea, Madrid, España

^bGrupo de Trabajo en Bioética, Sociedad Española de Medicina Interna, Madrid, España

^cUnidad de Psicología Clínica y de la Salud, Hospital La Fuenfría, Madrid, España

^dServicio de Medicina Interna, Ibermutuamur, Madrid, España

^eServicio de Medicina Interna, Hospital Rey Juan Carlos, Madrid, España

^fInstituto Colombiano de Estudios Bioéticos, Bogotá, Colombia

Communication with: Benjamín Herreros

Telephone: (34) 630 906 473

Communication with: benjaminherreros@gmail.com

In this article some of the most relevant terms in clinical bioethics are defined. The terms were chosen based on three criteria: impact on the most important problems in clinical bioethics, difficulty in understanding, and need to clarify their meaning. For a better understanding, the terms were grouped into 5 areas: general concepts (conflict of values, deliberation, conflict of interest, conscientious objection); justice (justice, distributive justice, models of justice, triage); clinical matters (information, competency, capability, informed consent, mature minor, coercion, secrecy, privacy, confidentiality, professional secrecy); end of life (prior instructions, limitation of therapeutic efforts, professional obstinacy, futility, palliative care, palliative sedation, principle of double effect, euthanasia, assisted suicide, persistent vegetative state, minimally conscious state, locked-in syndrome, brain death), and beginning of life (assisted reproduction, genetic counseling, preimplantation genetic diagnosis).

Keywords: Terminology, Bioethics, Ethicists.

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Clear terminology in bioethics is, not just fundamental, very necessary. Defining and differentiating concepts helps one deliberate properly, plus it helps decision-making without linguistic or conceptual barriers. Therefore, establishing a consensus on definitions is a first step to enable better understanding and ultimately lead to better decision-making.

Choosing the terms for this article was an extremely complex task. The final decision was made based on three criteria: impact on the most important current problems in clinical bioethics, difficulty in understanding, and the need to clarify their meaning due to the existence of errors in interpretation.

After a detailed review we chose 25 terms. Some important terms may be missing, but certainly the 25 terms we have included in this glossary are essential in today's bioethics.

On the other hand, they really are more than 25 terms presented, because many of them include in their definition several closely-related concepts. For example, persistent vegetative state, minimally conscious state, and locked-in syndrome are defined together.

The terms have been grouped into five areas (general concepts, justice, clinical setting, end of life, and beginning of life), which facilitates their understanding in a more global context. For their definition the literature has been reviewed on each term. After that, the English equivalent and Spanish synonyms are specified.

The term chosen is the one considered most appropriate, although in daily practice is inevitable that other synonymous terms are used. After that we proceed to briefly summarize the term, not forgetting to point out some important bioethical issues related to the term.

General concepts

Conflict of values^1,2 (Eng. Conflict of values) (Synonyms: ethical conflict, moral conflict)

Conflict between values ​​(rather than conflict of values) is understood when two values, which ideally should be carried out (for example, freedom or friendship), confront each other in reality. All ethical conflict is a conflict between values. Conflict between values ​​should try to be resolved dialogically, looking for the most appropriate possible courses of action (ways of resolution).

This dialogic way is justified by two arguments: the lack of prevalence of any absolute value above the rest, and respect for the cultural diversity of today's society that allows different scales of values.

At present, the term value has replaced the term virtue. Classical medical ethics, of the naturalistic school, gravitated around the "virtues" of the physician, and the preservation of health was his highest ethical concern. Bioethics, as a form of contemporary medical ethics, incorporates a utilitarian vision that replaces virtue with the originally economist figure of value.

Nature is abandoned as a source for perfection (the Greek physis, in which the physician, doctor, or healer was the sage who could best understand it) for a pragmatism that seeks to link clinical scientific medicine with particular subjective values ​​ (needs, desires, and expectations) of those involved in clinical decisions.

A bioethical conflict is an ethical conflict in the field of life sciences (if clinical bioethics, then this is in the field of medicine), and therefore it would be a conflict between values ​​in the field of life sciences.

Deliberation (Eng. Deliberation)

Deliberation is a method of analyzing a conflict between values ​​to make the best decision, which would be the prudent decision.³

Deliberating on ethical problems and conflicts means giving reasons about the conflicting values, which is not easy, since the values ​​are affected by a multitude of emotional, historical, cultural, or individual factors.⁴

In his text "The Nicomachean Ethics", the philosopher Aristotle defines deliberation as a process of decision-making inspired by prudence, phronesis. One way of reasoning proper to human practical life, which is applicable to ethics and politics.

Since the birth of bioethics, this prudential decision-making method has been incorporated into bioethics by virtually all schools and trends.^5,6

According to the approach of the bioethicist Diego Garcia, deliberation in clinical ethics has three stages of analysis: 1) deliberating on the clinical facts, that is exploring the circumstances of a decision; 2) deliberating on the values, the moral moment of analysis, which is related to the identification of conflicting values, and 3) deliberating on duties, the moment in which possible courses of action are identified and the consequences of each considered.

The deliberative process finally ends when an intermediate course of action is identified that attempts to preserve the largest number of conflicting values​.⁷

Conflicts of interest (Eng. Conflicts of interest)

A conflict of interest arises when the professional can benefit from their practice, and that self-interest collides with a professional and moral obligation. The term distinguishes between situations in which the individual voluntarily acts to favor themselves at the cost of their responsibility towards the patient (called conflicting interests), and those in which external factors can indirectly influence the decision of professional (real conflicts of interest).⁸

The term is also applicable in the framework of clinical research, especially regarding compensation for participating in clinical trials. It has been shown that professionals with economic ties to pharmaceutical or biotech companies see their ability to prescribe and professional behavior affected,⁹ so that today it is essential to declare all potential conflicts of interest in research. However, reporting standards accepted by institutions (academic, governmental, and/or private) are variable and sometimes insufficient.¹⁰

Conscientious objection (Eng. Conscientious objection)

Conscientious objection is when a professional refuses to perform a task required by the laws, regulations, or institutional protocols, arguing that the measure is in conflict with their personal, religious, or moral beliefs. That is, the objector recognizes the obligation as authoritative and binding, but believes that in their case, beliefs must prevail against legal duty. The objection is therefore individual and concrete.¹¹ Some authors define it as "the defense of the right against the law, when the latter in the end denies justice".¹² This term should be distinguished from objection to the law (which questions the overall legitimacy of a law), an attitude of disobedience (the subject rejects not only a particular measure, but the legitimacy of the authority that establishes the measure) or civil disobedience (willful disobedience, generally peaceful, of some laws that are considered unjust, which aims at active change of the institution that establishes the measure).

The recognition of conscientious objection is not universal, as some authors argue that in a real professional obligation there should be no objection, and professional conscience should not interfere in the administration of care.¹³

For an act of objection to be morally justified, one must consider: 1) whether the moral belief in question is acceptable; 2) whether the refusal to comply with the standard springs from genuine moral reasons, and 3) whether the case is liable to objection. Similarly, we must try to identify other possible courses of action that could preserve both the professional’s moral values ​​and the lawful request of the user.

Justice

Justice/Distributive justice (Eng. Justice, equity, fairness, distributive justice/Distributive justice.) (Synonyms: fairness/distribution of resources)

The debate on justice in the health context revolves around two issues: establishing the right to healthcare, and ensuring equal opportunities in access to health services. Both cases depend on how the distribution of available resources (which are always scarce) is made. Therefore, the concept of justice applied to health is the concept of distributive justice.

Codes of medical ethics pose distributive justice as a professional duty to ensure the equitable distribution of healthcare. This duty is now a source of many ethical problems. The modification of health services as a result of the adjustment and control of health spending has a direct impact on professionals’ decision-making. But there are also problems related to the optimization of resources not strictly linked with the overall organization of health systems, such as those arising from the doctor-patient relationship, the relationship with family members-caregivers,¹⁴ certain decisions on the limits of treatment, or other conflicts of interest.¹⁵

Models of justice (Eng. Models of justice)

Throughout history different ethical and political theories have been developed to define criteria for the distribution of resources. These theories or models differ in the principles that underpin the value of justice in each one: 1) liberalism puts freedom as the most important political value; it defines that which is just as freedom of trade in a free market, giving special importance to individual merit; it protects individual freedoms and negative individual rights; 2) socialism puts equality as a fundamental value of social organization; its canon states "from each according to his ability, to each according to his need", admitting little difference between needs; 3) utilitarianism understands as just, that which produces maximum social utility; its most current version places contractual justice (fairness) and the value of the convenient social contract as the most important; 4) communitarianism considers the common good as the benchmark to establish the distribution of resources. Most health systems actually include a mixture of several of these theoretical models.

All these concepts are rooted in the Aristotelian theory of justice. In Book V of the Nicomachean Ethics, Aristotle defined justice as an ethical virtue. He distinguishes two types of justice: one general (full) and another individual (partial). The partial type is in turn articulated into two kinds of justice: distributive (sharing honors and resources, both materially and socially) and transactional (correcting contractual violations and punishing crimes).¹⁶ These distinctions generated two senses of the term justice, one more legal or conventional (just is what is under the law, which is that posed by the general idea of ​​justice), and another particular is equity (natural justice, which is enhanced by general justice).¹⁷ The person who respects general justice is morally good, and the person who respects particular justice is fair because they take only what they deserve.

Triage (Eng. Triage)

Triage processes are responsible for assessing and classifying patients to prioritize their attention and the most appropriate location for treatment. Generally, the concept is applied in the context of emergency care, but triage is also performed in situations such as transplants or other scarce resources.

The term originated in field medicine; the initial approach was to treat the soldiers with greatest capacity to recover, more quickly. The most difficult cases had to wait, regardless of the severity of their injuries.

Today, this notion has been replaced by the idea of "ensuring that the appropriate patient receives the right treatment in the shortest possible time".¹⁸

From an ethical perspective, the triage processes are derived from the utilitarian field: "the greatest good for the greatest number." That is, society must pursue a rational use of resources to benefit the largest number of people. A medical problem often associated with triage processes is social distance.¹⁹ This term refers to the possibility that the decision of distribution of resources may not conform to the specific reality of each case. One must not forget that society has a responsibility to all its members, which can sometimes lead to a more flexible use of resources. 

Clinical setting

Information (Eng. Information) (Synonyms: communication)

In the clinical setting, information means any fact on a specific topic that allows a person to acquire or expand their knowledge about their health, how to preserve it, care for it, improve it, or recover it.^20,21 Distinction has been made between clinical information, where the responsibility belongs to the different professionals attending the patient during the treatment process or applying a specific technique or procedure (medical, psychology, or nursing, etc.) and medical information, a narrower concept that is integrated into clinical history.

Patients are entitled to know all available information regarding any action in the health field, and it will be the attending physician who ensures compliance with that right. Clinical information must be part of all care actions, it must be true, must be communicated to the patient understandably and appropriately to their needs, and must help them make decisions according to their own free will. The information, as a rule, is provided verbally, noting in the clinical history the purpose and nature of the intervention. Thus, the informed patient can exercise their legitimately recognized rights as a user of any health service. Finally, note that the right of the patient to not be informed is also respected.

Capacity/competency (Eng. Capacity/competency) (Synonyms: de facto capacity/capacity to act or legal capacity)

Capacity (capacity to act) is a legal term. It is the ability of a person to acquire rights and obligations on their own without other authorization. It is not uniform and it allows gradations, so that the newborn completely lacks it, the emancipated minor has it in limited form, and the adult enjoys it fully. The capacity to act may be restricted, partly or wholly, in the event of incapacitation. The decision in the field of disability is decided by the judge based on the forensic report. After that, the guardian of the disabled individual will be in charge of making the decision on the level of disability. Legal capacity is different, which all persons have from birth by the fact of being a person, with no restriction of any kind.

Competency (de facto capacity) refers to the psychological fitness of a patient to exercise personal autonomy and make their own health decisions.²² This is "the patient's ability to understand the situation they face, the values at stake, and the possible courses of action with the foreseeable consequences of each. Thus, the patient can make, express, and defend a decision that is consistent with their own values​".²³ The competency of a patient refers to a particular clinical situation for them.

In medicine, it is common to face situations in which the patient (legally able or disabled) is not competent to make a specific decision. For this we have developed tools that allow clinical tests to measure the patient's competence to make a specific decision. In clinical practice it is recommended to evaluate competence in some situations: 1) sudden changes in mental status; 2) rejection of an indicated diagnostic method or treatment (high-benefit and low-risk procedures); 3) request for diagnostic procedures or treatments of special risk (considered low-benefit and high-risk or low-risk but not indicated); 4) sudden and constant changes over time in the choices and decisions about diagnostic and therapeutic methods, and 5) the patient having risk factors for incompetence (cognitive disorders, psychological disorders, psychiatric disorders).

The English term for capacity is capacity, and competence is competence.

Informed consent (Eng. Informed consent) (Synonyms: authorization, permission). 

Informed consent regarding a medical action is an act of free choice without coercion by a person equipped with capacity and well-informed.^24,25 For informed consent to occur, a communicative and deliberative process must be established between the health professional and the patient, in which both agents jointly make decisions on the most appropriate way to address the specific health problem. The right to informed consent requires professionals to inform the patient of anything that might be relevant in the process of decision-making. After that, for the patient to be able to choose, they must exercise their will freely and with full possession of their mental faculties.

Sometimes, to improve the quality of information, in addition to verbal information, an informed consent form is attached. These written forms should aim to better inform the patient and not seek legal protection for professionals. Therefore, written informed consent forms cannot in any case replace the process of verbal information.

Mature minor (Eng. Mature minor)

In the field of bioethics, the mature minor doctrine is used to refer to children who have a sufficient and appropriate level of psychological maturity to understand, evaluate, and be actively involved in making decisions about their health.^26,27

Unlike what happens with older adults (in whom decision-making autonomy is assumed), maturity in minors must be demonstrated before enabling them to exercise the capacity to decide. The maturity assessment is usually the responsibility of the physician, and it may be conflicting (for example, determining who accesses the data of the clinical history, or regarding the inclusion of parents in certain decisions). Therefore, if necessary, one must request a specialized expert to elaborate on the capacity of the child patient. Where appropriate, in certain situations the mature minor can have training requested before the judicial authority.

Coercion (Eng. Coercion) (Synonyms: involuntary treatment, compulsory treatment)

The most accepted definition of coercion is offered by the American political philosopher Alan Wertheimer:²⁸ "A" (an alleged coercive agent) coerces "B" (the agent who is coerced) to do "X" (any action) in certain conditions of reality.

When coercion is exercised informally, i.e. outside of any specific legal regulation on mental health, it is called informal coercion or covert coercion.

When coercion is regulated by specific legislation on mental health or other more general laws, it is called formal coercion or overt coercion.

Formal coercion is usually applied in the form of involuntary hospitalization of patients, although in some countries the involuntary ambulatory treatment of outpatients has also been regulated, an initiative widely used in the English-speaking world.²⁹

Some authors propose the existence of a hierarchy of interventions³⁰ or "pressures"³¹ that the professional would have on the patient to achieve specific therapeutic goals. These would be exercised with continuity:

 

1) persuasion, where professionals simply give all necessary information to allow the patient to make the decision;

2) leverage, where the clinician uses the clinical relationship to convince the patient, or uses external arguments to convince them;

3) inducement, in which the professional induces the patient to comply with treatment in exchange for some benefit (if they do not make the recommended decision, they lose the benefit), and

4) threat, where they threaten to remove some privilege or benefit if they do not comply with the objective.

The argument of involuntary admission is used as a last resort to persuade the patient after this gradual process.³²

The ethical debate over the use of coercion with outpatients has two approaches:

1) coercion is unethical because is against human rights,³³ versus

2) the utilitarian view: coercion is potentially beneficial for patients and their families because it reduces the number of admissions.³⁴

Intimacy/Privacy/Confidentiality/Professional secrecy (Eng. Intimacy/Privacy/Confidentiality/Professional secrecy)

Privacy is defined as "that reserved space of physical, mental, spiritual, and social reality that protects the most valuable thing one has; what one wants to keep for oneself and those one chooses".³⁵ The personal right to privacy forms one of the foundations on which other individual rights are based: the right to freedom of expression or religion, autonomy, etc.

English-language literature tends to separate the realm of the intimate (whose care is required of all without exception), from that of privacy, which frames confidentiality and has certain limits.³⁶ In the clinical setting, the patient voluntarily exposes their privacy to the professional, in a particularly vulnerable position and with the need to establish a trust relationship.³⁷ Trust is not only a desirable feature of clinical practice, it is a requirement to establish an appropriate clinical setting. This asymmetry relationship generates in the professional an obligation of confidentiality, understood as the assumption of the privacy of personal information provided by the patient and the obligation to protect it against possible disclosure. Professional secrecy refers to the commitment not to disclose information obtained in the clinical setting. The secret is the means through which the doctor keeps "the reserve and confidentiality of all that the patient has revealed and confided [...] and that is related to health and privacy".³⁸ Thus, the patient’s right to privacy creates the obligation of confidentiality in the health professional, maintained in the form of medical secrecy.

End of life

Advance directives (Eng. Advance directives, living will) (Synonyms: living will, advance directives)

Advance directives^39-41 are written statements made when a person is competent in order to guide decision-making about healthcare when the declarer loses the ability to decide. These documents express the patient's wishes about treatments or measures to receive or not, helping the patient’s doctors and loved ones make decisions in uncertain situations.

Advance directives attempt to place the patient at the center of decisions about their healthcare. With them there is an effort to respect their values ​​and preferences and to avoid disproportionate measures, which also decreases unnecessary health expenditures at the end of life. The decisions included in advance directive documents are binding, and may include both positive measures (what to do or what action to perform, for example drawing guidelines for palliative treatment) and negative (what not to do, for example maintaining life artificially or withdrawing life support).

The measures included must be within good clinical practice (they cannot include, for example, the application of a treatment not indicated), so these documents must be supervised by health professionals to ensure the absence of malpractice. The form of management and the implementation of instructions is generally complex, and varies between countries and regions. In some places there are records to be able to execute them, others are made before a notary or before independent witnesses.

Limitation of therapeutic efforts (Eng. Withholding and withdrawing life-sustaining treatment, limitation of therapeutic effort.) (Synonyms: adequacy of therapeutic measures, limitation of life support)

Limiting therapeutic efforts^42-44 means not applying disproportionate measures for the therapeutic purpose proposed (fundamentally to cure, improve, or relieve) in a patient with poor prognosis and/or poor quality of life.

Disproportionate measure is understood as an inadequate balance between costs and benefits for the patient. A disproportionate measure would not provide a significant benefit to the patient and would result in damage or proportionally higher burden.

The term limitation of therapeutic efforts, although it is the most recognized, is not entirely appropriate, because the limitation also includes diagnostic procedures, not just therapeutic. Sometimes refraining from implementing extraordinary measures has also been associated with the concept of limitation of therapeutic efforts, but this term is ambiguous and not specific. An extraordinary measure has been proposed as one that is scarce, rarely available, expensive, invasive, high-risk, or requiring complex technology.  

The fact of being extraordinary does not clarify whether the measure should be limited. Limitation is indicated if the measure is disproportionate, not based on the fact of being an invasive or exceptional technique.

There are two options before a decision to limit therapeutic efforts: not initiating an action (withholding) or withdrawing a measure previously instituted (withdrawing). In general, the two possibilities tend to be seen as morally equivalent.

However, this is an open discussion because, in addition to such equivalence being an intellectual exercise, the patient who really is facing a withdrawal of treatment can never be clinically comparable to the one in whom it is proposed not to initiate a measure. In addition, there are usually differences in clinical characteristics, in the patient's own view or that of relatives. The key is therefore to consider each case individually.

Professional obstinacy (Eng. Therapeutic obstinacy, unreasonable obstinacy, dysthanasia) (Synonyms: dysthanasia, aggressive therapy, therapeutic obstinacy) 

Professional obstinacy^45-47 is the attempt to extend the life of a patient by means (diagnostic or therapeutic) disproportionate to the objective pursued with the patient (cure, improve, or relieve) in a patient with poor prognosis and/or poor quality of life. Therefore, professional obstinacy leads to the exaggerated and artificial prolongation of suffering, agony, or the process of death for the patient. To some extent it is the mirror image of limiting therapeutic efforts.  

We can find two types of situations: those in which maximum therapeutic effort is made (all the diagnostic or therapeutic potential is attempted due to clinical, social, and personal characteristics of the patient, based on an understanding that there is a reasonable probability of achieving therapeutic benefit with it); and those where the limitation of treatment is pursued (due to the disease process or clinical situation, certain procedures are restricted that may be more harmful than beneficial). It is in this second situation where one must be vigilant not to be professionally obstinate.

Futility (Eng. Medical futility) (Synonyms: wasted treatment, inappropriate treatment)

In the context of the end of life, the term futile^48,49 is used to refer to treatments that should not be administered to a patient with advanced disease. Strictly speaking, the term futility should mean lack of utility, and it should be reserved to qualify treatments unable to produce the desired physiological effects.

Thus, it is not possible to speak of futility for treatments that may be effective but may be inappropriate in the case of a patient in a terminal situation where the possible benefits are implausible or too small to justify their use.

Of course, one should never speak in futility if the restriction on using a drug derives exclusively from its high cost.

Palliative care (Eng. Palliative care) (Synonyms: palliative care, palliative medicine)

Palliative care^50,51 is care and attention intended to meet the needs of patients who are in the terminal phase of their illness.

By terminal phase we understand when the disease is advanced and continues progressing, and there is no effective treatment to slow its development, resulting in limiting symptoms and a limited short-term life expectancy.

In this context, the therapeutic objective should be aimed at improving the quality of life of patients, providing total care that, in addition to symptom control, includes the psychological, social, and spiritual spheres of the patient.

For all this, teamwork with different professionals is essential (doctor, nurse, psychologist, social worker, spiritual assistant), to be well-coordinated and able to attend both in the hospital and in the patient's home.

Moreover, palliative medicine must care for the caregiver and provide support for the patient's family. Finally, palliative care must extend beyond the death of the patient and monitor the grief process, which in some cases can be very painful and even pathological.

Palliative sedation/Principle of double effect (Eng. Palliative sedation/principle of double effect) (Synonyms: terminal sedation, sedation in agony)

Palliative sedation^52,53 is a last resort for terminal patients to relieve intense symptoms refractory to the specific treatment. It involves the administration of sedative drugs in order to reduce the level of consciousness to the extent necessary to prevent the patient's suffering, in both adults and children.

Before starting sedation is recommended, if circumstances permit, to review with an expert multidisciplinary team (including psychiatry, pain unit, etc.) to ensure that there is no other effective alternative. In this context, intensive treatment of unbearable pain and other symptoms at the end of life is ethically and legally acceptable, even if death is accelerated, provided that the intention of the action (administration of sedatives) is pain relief and not directly to cause death. Herein lies the principle of double effect, which makes the difference between palliative sedation, where death occurs as a side effect, and euthanasia, where death is the goal sought directly.

Euthanasia/Assisted Suicide (Eng. Euthanasia/assisted suicide)^54,55

Euthanasia is the action directly aimed at ending the patient's life at their request, and it is performed by a physician. Thus, the characteristics of euthanasia are active, direct, voluntary, and medical. Therefore expressions such as passive euthanasia, indirect euthanasia, or involuntary euthanasia should be banished. Euthanasia is legal in the Netherlands and Belgium. In assisted suicide, someone gives the patient the information, the prescription, or the drug directly to the patient to end their life. In medically-assisted suicide, it is a doctor who provides the information and the drug to the patient, which is legal in the Netherlands, Belgium, Switzerland, and various US states, such as Oregon, Vermont, Washington, and Hawaii.

With a request for euthanasia or assisted suicide, it is essential to listen to the patient, avoiding taking a moral position a priori, and to try to understand the magnitude of their suffering. Then one must review the palliative care received and the degree of control of physical and psychological symptoms. In addition, one must assess the family situation and the possible social and economic problems.

Finally, it may be advisable to consult on the case with a palliative care expert, psychologist, social worker, spiritual assistant, or ethics committee.

Persistent vegetative state/minimally conscious state/locked-in syndrome⁵⁶ (Eng. Vegetative state/minimally conscious state/locked-in syndrome)

After a period of coma, some patients may have recovery, while others, with varying degrees of brain damage, progress to a vegetative or minimally conscious state.

Vegetative state⁵⁷ is characterized as a waking syndrome without response to external stimuli. The sleep-wake cycles are normal, but during waking phases there is no evidence of awareness of self or environment. Studies suggest that they do not feel pain.

It is commonly called permanent vegetative state if it persists more than 1 year after a traumatic injury or more than 3 to 6 months after an anoxic event. After that period, cases of recovering higher states of consciousness are extremely rare.

The period prior to being qualified as permanent is called persistent vegetative state. In this period improvement of the state of consciousness is considered possible, which does not mean that they will fully recover the contents of consciousness.

The minimally conscious state is a clinical situation similar to the vegetative state, but there is partial preservation of consciousness, which is reduced drastically. Patients may be able to respond to simple commands to follow, to give yes or no answers, and to have minimal verbalization (often incomprehensible) or intentional behavior.

The activation of the brain has been shown similar to healthy controls in response to painful and emotional stimuli, although the level and exact content of consciousness is unknown. Their prognosis is varied and a bit more favorable than the vegetative state, although recovery is rare and patients are usually left with permanent, multiple, and severe disabilities. 

The evaluation of development of these states is usually very difficult. It sometimes depends on the subjective interpretation of observed behavior. In addition, patient responses on physical examination may vary over time, making the misdiagnosis rate among these groups high.

In locked-in syndrome, consciousness is not affected. It is due to a lesion in the pons (not in the cerebral cortex) and therefore it is not a disorder of consciousness like those above.

Patients retain cognitive ability but their clinical presentation is similar to the genuine disorders of consciousness (vegetative state and minimally conscious state) because they are completely paralyzed and unable to speak or move, i.e., they are "cloistered" in their body.

Most are able to communicate through eye movements, although some also lack this capability. In this case it is called total locked-in syndrome.

Patients in a vegetative state, minimally conscious state, and with locked-in syndrome can stay alive indefinitely with proper nutrition, hydration, and a correct general care. Therefore, the limitation of therapeutic efforts is often debated around these cases: what measures to limit and how long to keep them alive.

Brain death^58,59 (Eng. Brain death) (Synonyms: cerebral death)

Brain death⁶⁰ is the complete and irreversible loss of brain activity. Such loss results in the absence of cognitive and sensory capacity, coupled with the loss of all brain stem functions including control of respiration.

The diagnosis of brain death is predominantly clinical. The essential components of diagnosis vary but usually include evidence of an established etiology capable of causing brain death, clinical confirmation of the absence of brain stem reflexes, an apnea test, and the absence of confounding factors that may limit evaluation (use of barbiturates, severe head trauma, etc.).

If complete and accurate clinical evaluation is not possible, additional tests may be used to try to prove the absence of brain electrical activity or absence of cerebral blood flow. When a patient meets the criteria for brain death, they are considered legally dead, life support can be withdrawn, and they can be chosen to donate organs.

Beginning of Life

Assisted reproduction^61-63 (Eng. Assisted Reproductive Technology -ART-) (Synonyms: artificial fertilization)

This includes technical procedures involving in vitro manipulation of oocytes, sperm, or embryos in order to obtain a conception from the parent lines. Through assisted reproduction it is possible to replace some of the natural processes that occur during reproduction.

There are different methods of assisted reproduction: in vitro fertilization; collection, cultivation, and maturation of oocytes and embryos; embryo transfer; sexing semen; gamete intrafallopian transfer; or intracytoplasmic gamete injection.

The review of The International Committee for Monitoring Assisted Reproductive Technology (ICMART) with the WHO excluded artificial insemination as a technique of assisted reproduction, keeping it as veterinarian assisted reproduction.

Each country has specific regulations on techniques that can be performed to generate and implant embryos, but the data confidentiality of potential gamete donors and informed consent of those involved in assisted reproduction are common in all countries.

Genetic counseling^64,65 (Eng. Genetic counseling) (Synonym: genetic counseling)

Genetic counseling is educational work to guide the patient (or their caretakers) in decision-making before a genetic disease or the risk of one. During this procedure all available information about the disease is provided, trying also to help the patient make the best decisions.

Patients may go to the doctor with biases or constructs that need to be clarified, for example if a hereditary problem predisposes or determines the presence of a disease. The counselor should always accompany the patient, clarifying and easing their fears. And if necessary, they must further analyze the genetic diagnosis so that the patient can make an informed decision.

In 1991 A. Clarke⁶⁶ asked the question, "Is non-directive genetic counseling possible?", although this does not condition the decision of the individual advised. Since this is very difficult to answer, advice should be given from the greatest scientific objectivity, always taking into account the data confidentiality and informed consent of those affected.

Preimplantation genetic diagnosis⁶⁷ (Eng. Preimplantation genetic diagnosis [PGD] and/or screening [PGS])

Preimplantation genetic diagnosis is a form of prenatal diagnosis, in which cells from embryos created by in vitro reproductive biotechnology are analyzed to assess the possible presence of genetic defects. After preimplantation genetic diagnosis, those embryos that are free of genetic defects are implanted in the womb for the future fetus to be free of genetic disease.

Diagnostic techniques for preimplantation genetic diagnosis may involve karyotype analysis, polymerase chain reaction, or FISH (Fluorescence In Situ Hybridization). This is usually practiced in the case of parents at high risk of having a child with a genetic disease, either monogenic diseases (diseases linked to a particular gene) or chromosomal abnormalities (structural chromosomal aberrations such as translocations). It has also been used in cases with high risk of aneuploidy, for example in some pregnancies in women over 37 years old.

The definition of preimplantation genetic diagnosis also includes the analysis of oocytes in search of mitochondrial defects,⁶⁸ because mitochondrial DNA is transmitted to the children by only the mother (children’s mitochondria are maternally inherited). This analysis can be made from embryonic blastomeres and polar bodies.

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