**The Unresolved Issue of the "Terminal Disease" Concept**

Sergio Eduardo Gonorazky

*Hospital Privado de Comunidad de Mar del Plata, Argentina* 

#### **1. Introduction**

414 Health Management – Different Approaches and Solutions

Elliott, B.J. (1987). *Effective Mass Communication Campaigns: A Source Book of Guidelines*. Elliott

Halpern, D. and Bates, C. (2004) Personal responsibility and changing behaviour: the state of

Hornik, R., Woolf, K.D. (1999). Using cross-sectional surveys to plan message strategies. *Soc* 

Kitzinger, J. (1999). Researching risk and the media. *Health, risk & Society*, Vol. 1, No. 1, 1999,

Leiss*,* W. *(*1998*).* Risk Communication and public knowledge. In: *Communication Theory* 

McGuire, W.J. (1989). Theoretical Foundations of Campaigns. In: *Public Communication* 

Needleman, C. (1987). Ritualism in communicating risk information. *Sci Tech Hum Values,*

Noar, S.M. (2006). A 10-Year Retrospective of Research in Health Mass Media Campaigns:

Randy, W.E., Shults, A., Sleet, D., Faahb, J.L., Thompson, R.S. & Rajab, W. (2004).

Rogers, E.M. & Storey, J.D. (1987). Communication campaigns. In: *Handbook of communication science*, C. Berger & S. Chaffee (Eds.), 817-846, Newbury Park, Sage, CA. Rowan, F. (1996). The high stakes of risk communication. *Preventive Medicine,* Vol. 25, 1996,

Slovic, P. (1994). Perceptions of risk: Challenge and paradox. In: *Future and risk management,* Brehmer, B. & Sahlin, N.E. (Eds.), 63-78, Kluwer Academic Publishers, NY. Solomon, D.S. (1982). Health campaigns on television. In: *Television and behavior*. Pearl, D., Bouthilet, L. & Lazar, J. (Eds.). NIMH Technical Reviews, Washington, DC. Szerzynski, B., & Wynne, B. (1996). *Risk, Environment and Modernity. Towards a new Ecology,*

Tay, R. (2002). Exploring the effects of a road safety advertising campaign on the

Wakefield, M.A., Loken, B. & Hornik, R.C. (2010). Use of mass media campaigns to change health behaviour. The Lancet, Vol. 376, No. 9748, Oct 2010, 1261-71, 0140-6736. Witte, K., Allen, M. (2000). A meta-analysis of fear appeals: implications for effective public

Woods, D.R., Davis, D., & Westover, B.J. (1991). "American Responds to AIDS": Its content,

health campaigns. *Health Educ Behav*, Vol. 27, 2000, 591–615.

perceptions and intentions of the target and nontarget audiences to drink and

development process, and outcome. *Public Health Reports*, Vol. 106, No. 6, 1991, 616-

alcohol-involved crashes. Am J Prev Med, Vol. 27, No. 1, 2004, 57-65. Redman, S., Spencer, E.A., & Sanson-Fisher, R.W. (1990). The role of mass media in changing

Minister's Strategy Unit. www.strategy.gov.uk/files/pdf/pr.pdf

*Today,* Crowley, D. &. Mitchell, D. (Eds.), Polity Press, Oxford.

*Perspectives*, Vol. 11, No. 1, 2006, 21 – 42, 1087-0415.

*Promotion of Australia*, Vol. 7, No. 2, 1990, 91-99.

knowledge and its implications for public policy. London: Cabinet Office, Prime

*Campaigns,* Rice, R.E. & Atkin, C. (Eds.), 43-65, Newbury Park, Sage Publications,

Where Do We Go From Here?. *Journal of Health Communication: International* 

Effectiveness of Mass Media Campaigns for reducing drinking and driving and

health-related behavior: a critical appraisal of two models. *Journal of Health* 

Giddens, A. (1999). Risk and Responsibility. *Modern Law Review,* Vol. 62, No. 1, 1999, 1-10. Hadden, S.G. (1989). Institutional Barriers to Risk Communication. *Risk Analysis*, Vol. 9,

& Shanahan Research, North Sydney.

*Marketing Q,* Vol. 5, 1999; 34–41.

1989, 301–308.

55-69.

CA.

26-29.

622.

SAGE Publications, London.

drive. *Traffic Inj Prev,* Vol. 3, 2002, 195–200.

Vol. 12, 1987, 20-25.

#### **1.1 Prefatory emarks**

 *"I have already told you with what care they look after their sick, so that nothing is left undone that can contribute either to their case or health; and for those who are taken with fixed and incurable diseases, they use all possible ways to cherish them and to make their lives as comfortable as possible. They visit them often and take great pains to make their time pass off easily; but when any is taken with a torturing and lingering pain, so that there is no hope either of recovery or ease, the priests and magistrates come and exhort them, that, since they are now unable to go on with the business of life, are become a burden to themselves and to all about them, and they have really out-lived themselves, they should no longer nourish such a rooted distemper, but choose rather to die since they cannot live but in much misery; being assured that if they thus deliver themselves from torture, or are willing that others should do it, they shall be happy after death: since, by their acting thus, they lose none of the pleasures, but only the troubles of life, they think they behave not only reasonably but in a manner consistent with religion and piety; because they follow the advice given them by their priests, who are the expounders of the will of God. Such as are wrought on by these persuasions either starve themselves of their own accord, or take opium, and by that means die without pain. But no man is forced on this way of ending his life; and if they cannot be persuaded to it, this does not induce them to fail in their attendance and care of them: but as they believe that a voluntary death, when it is chosen upon such an authority, is very honourable, so if any man takes away his own life without the approbation of the priests and the senate, they give him none of the honours of a decent funeral, but throw his body into a ditch."*1 Sir Thomas More (1516)

In 1977, Leon Eisenberg suggested a distinction should be made between the terms "disease" and "illness" (Eisenberg, 1977): *"The dysfunctional consequences of the Cartesian dichotomy have been enhanced by the power of biomedical technology. Technical virtuosity reifies the mechanical model and widens the gap between what patients seek and doctors provide. Patients suffer ''illnesses''; doctors diagnose and treat ''disease''. Illnesses are experiences of discontinuities in states of being and perceived role performances. Diseases, in the scientific paradigm of modern medicine, are abnormalities in the function and/or structure of body organs and systems. Traditional healers also redefine illness as disease: because they share symbols and metaphors consonant with lay beliefs, their healing rituals are more responsive to the psychosocial context of illness…When physicians dismiss illness because ascertainable ''disease'' is absent, they fail to meet their socially assigned responsibility. It is essential to reintegrate ''scientific" and ''social'' concepts of disease and illness as a basis for a functional system of medical research and care.".* 

<sup>1</sup> Direct quotations appear in italics.

The Unresolved Issue of the "Terminal Disease" Concept 417

obstinacy or neglect is evidenced, or whether those who are close to the patient (next of kin,

It could be said that decision-making from a functional perspective frequently fails to overtly specify whether a given disease is terminal or not. However, an in-depth look into the matter reveals that it does so implicitly, in so far as it considers whether the implementation of measures which will unnecessarily prolong life and/or the suffering of

The concept of terminal disease will be discussed all through this paper; however, it is convenient to clarify *ad initio* that, in fact, there are no terminal diseases but terminal patients, and this is precisely the main guiding principle behind this work. Reification of the concept of terminal disease, disregarding the terminal patient, frees many from the burden of disentangling the complex, dynamic nature of each situation in particular and the

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

*"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* 

*4. Great emotional impact on the patient, the family and healthcare workers, closely related to the* 

*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* 

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

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

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

*3. Presence of multiple, changing, severe symptoms or problems of multifactorial origin.* 

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

caregivers and therapists) are respectful of the patient's dignity.

**2. Terminal disease, terminal illness and terminal sickness** 

patients and their families is unsubstantial or not.

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

*1. Presence of advanced, progressive, incurable disease. 2. Reasonable unresponsiveness to the specific treatment.* 

*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."* 

example, provides the following definition:

*implicit or explicit immediacy of death. 5. Life expectancy of six months or less.* 

**2.1.1.1 Advanced disease and life expectancy** 

commitment which that entails.

*therapy.* 

decisions.

**terminal** 

*The key elements are:* 

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 or mental difficulties.

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

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", which carries multiple meanings with it.

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 comes to making decisions involving them.

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

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 workers.

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 obstinacy or neglect is evidenced, or whether those who are close to the patient (next of kin, caregivers and therapists) are respectful of the patient's dignity.

It could be said that decision-making from a functional perspective frequently fails to overtly specify whether a given disease is terminal or not. However, an in-depth look into the matter reveals that it does so implicitly, in so far as it considers whether the implementation of measures which will unnecessarily prolong life and/or the suffering of patients and their families is unsubstantial or not.

The concept of terminal disease will be discussed all through this paper; however, it is convenient to clarify *ad initio* that, in fact, there are no terminal diseases but terminal patients, and this is precisely the main guiding principle behind this work. Reification of the concept of terminal disease, disregarding the terminal patient, frees many from the burden of disentangling the complex, dynamic nature of each situation in particular and the commitment which that entails.
