**2.1 Terminal disease or the medical point of view**

The definition of terminal disease is seemingly simple, clear and univocal. The Spanish Society of Palliative Care (Sociedad Española de Cuidados Paliativos [SECPAL, n.d.]), for example, provides the following definition:

*"In the case of terminal diseases, a number of elements should be present. These elements are important not only to consider a terminal disease as such but also to determine the most suitable therapy.* 

*The key elements are:* 

416 Health Management – Different Approaches and Solutions

Allan Young (Young, 1982) draws a further distinction between "disease", "illness" and "sickness": *"DISEASE retains its original meaning (organic pathologies and abnormalities). ILLNESS is essentially the same, referring to how disease and sickness are brought into the individual consciousness. SICKNESS (…) is redefined as the process through which worrisome behavioral and biological signs, particularly ones originating in disease, are given socially recognizable meanings, i.e. they are made into symptoms and socially significant outcomes. Every culture has rules for translating signs into symptoms, for linking symptomatologies to etiologies and interventions,and for using the evidence provided by interventions to confirm translations and legitimize outcomes. The path a person follows from translation to socially significant outcome constitutes his sickness. Sickness is, then, a process for socializing disease and illness".* These ideas were later reinstated by other authors and publications, such as The Hastings Center Report: The Goals of Medicine. Setting New Priorities (Callahan et al., 1996). In this document, "disease" is defined as a physical or mental dysfunction, based on a deviation from the statistical standard, which causes impairment or increases the probability of an early death; "illness" is understood as an individual's subjective perception that his or her physical or mental wellness is either altered or absent, affecting the ability to perform normal daily activities as a consequence; "sickness" is the social perception of an individual's health status, usually, an external perception that this individual has physical

The different realities of patients, their families, physicians and society at large, which will be discussed below, lead us to consider an anthropological perspective in which the medical point of view of **terminal disease** is integrated with another that takes into account the suffering patients and their families undergo (**terminal illness**) and with the polymorphous

If we consider that the meaning of a word is made up of the set of relations (both situational and paradigmatic) reflected in that word, and that those relations are built all through the history of mankind and each individual's own history, we should understand that it is not possible to provide univocal answers in the case of such an expression as "terminal disease",

The medical description of terminal disease, the suffering patients and their families undergo, and the view society holds are often mutually and internally contradictory. The situation arising out of this is both complex and dynamic, hence the need for a dialogue focused on the suffering endured by the "protosufferers" (patients and next of kin) when it

The meaning of terminal disease should ultimately be a single, non-reproducible, contextualized construction, one which embodies the dialectic contribution made by the

The purpose of this paper is to question the pretended univocity of the definition of terminal disease as it is understood from an exclusively unidimensional approach (the medical one), definition which, from a functional point of view, turns out to be a rigid concept that imposes itself over the needs of patients, their families, and even healthcare

It should be borne in mind that the definition of terminal disease is not intended to be solely descriptive, but, as it is later observed, it has a determining functional nature. Based on it, it could be determined whether a particular treatment is futile or not, or if therapeutic

interpretation made by the family and society (**terminal sickness)**.

or mental difficulties.

which carries multiple meanings with it.

comes to making decisions involving them.

various agents involved.

workers.


*This complex situation requires the uninterrupted provision of appropriate care and support.* 

*End-stage CANCER, AIDS, motor neuron disease, specific organ system failure (kidney, heart, liver failure, etc.) meet these criteria to a greater or lesser extent. Traditionally, providing adequate care to end-stage cancer patients has been the raison d'etre of Palliative Care.* 

*It is ESSENTIAL not to consider a potentially curable patient as terminally ill."* 

Some of the controversial aspects of this definition will be discussed below. It is worth pointing out, however, that this definition is not to be rejected entirely. In fact, it could be accepted as a guideline, but not as a dogma that should be asserted over concrete decisions.

#### **2.1.1 How advanced, incurable and progressive a disease should be to be considered terminal**

#### **2.1.1.1 Advanced disease and life expectancy**

An 84-year-old male patient has a 10-year history of dementia. For the last three years, he has been bedridden, unable to walk, with incontinence of bowel and bladder. His ability to communicate is nearly lost (he occasionally answers "yes" or "no" to questions), he does not

The Unresolved Issue of the "Terminal Disease" Concept 419

occur. Yet, in settings with less sophisticated means, patients are expected to progress towards death. Anencephaly could be mentioned as another example of nonviable disease, possibly comparable to an irreversible vegetative state; it is terminal but it does not meet the

In spite of the lack of primary injury progression, there could be modifications which may improve or worsen the clinical condition, thus challenging the univocal definition of the

Furthermore, there are dimensions in the progression of a disease which cannot be seen from an exclusively biological perspective, such as the social and psychological impact that failure of recovery has on patients, their families and even the community (and this impact can certainly be progressive). In other words, there may not be an "unfavourable" progression in biological terms but there could be one from a psychological and/or social

While a two-valued logic provides us with safe, clear definitions (advanced vs. not advanced, progressive vs. non-progressive, incurable vs. curable), our patients' individual situations, seen from a medical perspective, challenge us to adhere to a multivalued, even fuzzy, logic, in which "things are to the extent they are, and things are not to the extent they are not", and in which "nothing exists by itself but in relation to other

If we understand that there are no diseases but patients, that there are no absolute, timeless realities but concrete, historical circumstances in which individuals live, get sick and die, the criteria to define a disease as advanced, progressive or incurable vary, and, as we have already mentioned, they need to be specified by medical professionals considering each

Recently published news articles in Argentina (Carbajal, 2011a, 2011b, 2011c, 2011d, 2011d), described the situation of a 19-year-old girl (MG) who had been diagnosed with neurofibromatosis type I (Von Recklinghausen disease). The girl considered she had an "advanced" form of the disease. She was bedridden and had severe shortness of breath; however, she was in full possession of her mental faculties. "*It is not fair to live like this. Nearly all of my body is numb, and whatever I feel is painful. I can't even hold a cup in my hand, and I'm forced to lie down all the time. I choke, I can't breathe. This is not a life worth living; I don't want to go on like this. But they don't understand, they think one can always pull through. But I can't bear it any longer, I simply can't*", one of the articles transcribed. Despite her medical condition, MG was lucid and was very clear when expressing her position. Physicians considered that hers was not a terminal disease; nonetheless, the patient wanted to be given

The case became known to the public. Melina, that was her name, was apparently sedated in the end, and died a few days after the media published her case (Carbajal, 2011e, 2011f). Ramón Sampedro was a patient who was not considered terminal from a medical point of view. He was quadriplegic due to a traumatic cervical spine injury, and was bedridden for more than 30 years as a consequence of this. In his "Letters from Hell", where he claimed to

progressiveness criteria required in the definition.

**2.2 Terminal illness or the patient's perspective** 

sedatives to induce unconsciousness and stop feeling pain.

be living in, he expressed (Sampedro, 2004), (translation is mine):

*"To no avail, I say to them: No!, I am dead!,* 

term "progressive disease".

point of view.

things".

individual case.

**2.1.2 Discussion** 

react to simple commands, and he rarely recognizes loved ones. He does not present swallowing difficulties but is unable to feed himself (he requires help from a caregiver). Could this patient be considered terminally ill?

In his statement for the Association of Alzheimer Disease, SG Post expresses that *"the advanced stage of dementia includes a loss of all or nearly all ability to communicate by speech, inability to recognize loved ones in most cases, loss of ambulation without assistance, incontinence of bowel and/or bladder, and some weight loss due to swallowing difficulties. The advanced stage is generally considered terminal, with death occurring on average within two years."* (Post, 2007).

The preceding definition extends life expectancy from the maximum of six months, as stated by the Spanish Society of Palliative Care, to an average of two years. This evident inconsistency of criteria shows us that the definition of the concept from the medical perspective is not univocal.

At the age of 42, Stephen Jay Gould, the famous paleontologist, was diagnosed with an abdominal mesothelioma and was informed that the median mortality after discovery was 8 months. In his article "The Median isn't the Message", Gould explains why it is the variance more than the mean, or the median in his case, what should be taken into account to establish a disease prognosis. The reason he gives is that the most common statistical measures of central tendency (either the mean or the median) are useful only to define a Platonic state but not the hard reality of the dispersion of results (Gould, 1985). Gould died at the age of 62.

Defining how advanced a disease is by establishing a period of time which is not only arbitrary but dubious as an estimate seems to be far from functional when it comes to making the kind of decisions we are concerned with. In other words, as it was once expressed by Sir William Osler (Osler, n.d.), *"Medicine is a science of uncertainty and an art of probability".* 

#### **2.1.1.2 Incurable, untreatable and disease-modifying drugs**

In medicine, it is well-known that incurable is not synonymous with untreatable. Also, for certain diseases, there are therapies which, without being necessarily palliative, modify disease progression without curing it. In other words, disease progression in a group of subjects receiving a new drug may be statistically better relative to a particular aspect when compared to an untreated group.

The fact that a disease is incurable but its progression may be slowed down creates a grey area between "curable and incurable". Disease-modifying drugs are useful but they do not cure.

Furthermore, certain measures considered therapeutic or even curative in some cultures are not accepted in others. A clear example is the rejection of blood transfusion by Jehovah's Witnesses.

#### **2.1.1.3 Lack of primary injury progression is not synonymous with lack of disease progression**

Non-progressive secondary injuries may put a patient at such a risk that, in the event of complications, they may cause his or her death.

Patients with severe sequelae, such as irreversible permanent vegetative state following anoxic or traumatic brain injury, who exhibit no progression of their primary brain injury, may be maintained in that state through intensive care procedures. These procedures are usually implemented to prevent the occurrence of complications or to reverse them if they occur. Yet, in settings with less sophisticated means, patients are expected to progress towards death. Anencephaly could be mentioned as another example of nonviable disease, possibly comparable to an irreversible vegetative state; it is terminal but it does not meet the progressiveness criteria required in the definition.

In spite of the lack of primary injury progression, there could be modifications which may improve or worsen the clinical condition, thus challenging the univocal definition of the term "progressive disease".

Furthermore, there are dimensions in the progression of a disease which cannot be seen from an exclusively biological perspective, such as the social and psychological impact that failure of recovery has on patients, their families and even the community (and this impact can certainly be progressive). In other words, there may not be an "unfavourable" progression in biological terms but there could be one from a psychological and/or social point of view.
