OBSAH / CONTENTSMEDICNSKAETIKA&BIOETIKA

MEDICALETHICS&BIOETHICS

ASOPIS STAVUMEDICNSKEJ ETIKY A BIOETIKY

JOURNAL OF THE INSTITUTE OF MEDICAL ETHICS & BIOETHICS

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BRATISLAVA, SLOVAK REPUBLICAprl Jn 1995 Vol. 2 No. 2

PPPPvvvvooooddddnnnn pppprrrrcccceeee////OOOOrrrriiiiggggiiiinnnnaaaallll AAAArrrrttttiiiicccclllleeeessss .......................................................................................1 The Ethical Debate in Bioethics: Contribution of Personalism

/Etick debata v bioetike: prspevok personalizmu L. Palazzani ........................1 VVVVuuuukkkkaaaa mmmmeeeeddddiiiiccccnnnnsssskkkkeeeejjjj eeeettttiiiikkkkyyyy////TTTTeeeeaaaacccchhhhiiiinnnngggg ooooffff MMMMeeeeddddiiiiccccaaaallll EEEEtttthhhhiiiiccccssss ................................................5

Patient as a Person/Pacient ako osoba M. Nemekov ..........................................5MMMMaaaatttteeeerrrriiiillllyyyy zzzz kkkkuuuurrrrzzzzoooovvvv MMMMEEEEBBBB////MMMMaaaatttteeeerrrriiiiaaaallllssss ffffrrrroooommmm tttthhhheeee CCCCoooouuuurrrrsssseeeessss ooooffff IIIIMMMMEEEEBBBB..............................6

International Course on Medical Ethics: Ethics of the Family Healthand Care, Institute of Medical Ethics and Bioethics, Bratislava (Slovakia),September 24, 1994:

Parenthood and Clinical Genetics/Rodiovstvoa klinick genetika H. Watt .............................................................................................6

Dying Person in the Family: Problems and Conditions for a RealAccompanying/Umierajci v rodine: problmy a podmienky skutonejspoluasti R. Pegoraro ....................................................................................................8

What Can Palliative Care Offer?/o me poskytn paliatvna starostlivos? I. Finlay ........................................11

Why hospices oppose euthanasia/Preo hospice odporuj eutanzii I. Finlay ............................................................12

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PVODN PRCE / ORIGINAL ARTICLES

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NAAAALLLLIIIISSSSMMMM****

Laura Palazzani

Institute for Bioethics, Catholic University of the Sacred Heart,Rome (Italy)

The paper gives an overview of two main positions existing at present in thefield of bioethics: the secular conception and the personalistic one. The for-mer tries to justify the moral choice autonomously and empirically with referen-ce only to man. Each individual makes his own moral (private) choice, withoutany reference to God, that is to transcendency. The secular method of analysis isfactual (or empirical), as truth is related to the empirical verification of facts:truth (and, above all, moral truth) can only be physical (not metaphysical). It isalso calculating, as rationality is reduced to the search for logical consistencyand coherence of the arguments. The paper briefly comments on the most wides-pread philosophical trends of the secular perspective: sociobiologism, subjecti-vism, neoutilitarianism and neocontractualism. It then proceeds to characterizeontological personalism as a philosophical point of view that justifies respect forhuman life in all its aspects. The ontological personalism considers the personas the centre of bioethics. On the basis of the ontological concept of person it ispossible to justify the fundamental principles of personalistic bioethics: a) thefundamental value of life; b) the principle of totality or therapeutic principle; c)the principle of freedom and responsibility; d) the principle of family; e) the prin-ciple of sociality and assistance. The most important philosophical contributionof personalism to contemporary bioethics (or better, to metabioethics) seems tobe its ontological concept of the person: it provides a deeper understanding formoral and juridical reflections that are respectful of all human beings without dis-crimination. (Abstract writen by the editor.)

Key words: contemporary bioethics, metabioethics, ontological personalism,secular approaches in bioethics

The present scientific and technological advance in the biomedical field opensnew possibilities of intervention on life (human and nonhuman) and, at the sametime, it raises new moral questions. Anything that can be done, must be done any-way? Because an action can be (technically) undertaken, does it mean that thisaction is (morally) right? There is substantial theoretical agreement among scien-tists, moralists and jurists on the necessity of giving some sort of limits to techno-logical researches and applications: there are only a few people left (as far as the

****Paper presented at the International Course on Medical Ethics: Ethics of the Family Health and Care,

Institute of Medical Ethics and Bioethics, Bratislava (Slovakia), September 2 4, 1994.

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theory is concerned) who accept the illuministic concep-tion of complete trust in scientific progress, asking for theabsolute freedom of science. But, which limits? This is thespecific question for moral philosophy. Contemporary phi-losophical thought is strongly marked by pluralism: moralpositions differ as far as the choice of principles and valuesis concerned. There is no absolute unanimity in morality:different moral trends suggest (or better, justify) differentprinciples and values that should be the boundary line bet-ween what is right and what is wrong in scientific practice.

In other words, moral philosophy does not deal with theepistemological question of justifying bioethics, but it dealswith the justification of metabioethics (1). Metabioethicstries to give a rational explanation to the ethical choice ofthe principles and values which determine mans behaviourwhen he has to intervene on life (human and nonhuman)(2). It is obvious that if metabioethics is different, bioethicsis also different: if the moral theory is different, its practicalapplication is, consequently, different.

This is why the main question of the present philosophi-cal debate is no longer: is it necessary to give science andtechnology ethical principles?, but the question is: whichethics for bioethics?. And it is just at this level (of metabi-oethics) that the role of philosophy is clear: it deals with dis-crimination between good and evil in the scientific fieldand with the right way of acting in the biomedical field.

Because of the existing moral pluralism, the values andprinciples which are proposed in bioethics are extremelydiversified (3).

The question that follows is therefore inevitable: wwwwhhhhiiiicccchhhhmmmmoooorrrraaaallll ffffoooouuuunnnnddddaaaattttiiiioooonnnn iiiinnnn bbbbiiiiooooeeeetttthhhhiiiiccccssss????

Two of the main existing positions at the moment are:the sssseeeeccccuuuullllaaaarrrr ccccoooonnnncccceeeeppppttttiiiioooonnnn and the ppppeeeerrrrssssoooonnnnaaaalllliiiissssttttiiiicccc ccccoooonnnncccceeeeppppttttiiiioooonnnn.

1111.... The secular conception (which includes different the-ories) is based on the foundation of moral principles and va-lues etsi Deus non daretur, that is, as if God were not, or,in absence of God (4). In other words, the secular concep-tion tries to justify the moral choice autonomously and empi-rically with reference only to man. Each individual makes hisown moral (private) choice, without any reference to God,that is to transcendency. This kind of approach is, philosop-hically speaking, factual and calculating (as Heidegger re-fers to it), because it structurally denies metaphysics. The se-cular method of analysis is factual (or empirical), as truthis related to the empirical verification of facts: truth (and,above all, moral truth) can only be physical (not metaphysi-cal). Like neopositivism, metaphysics is considered a nonsen-se: only facts are real and true. The secular approach is alsocalculating, as rationality is reduced to the search for logi-cal consistency and coherence of the arguments.

The most widespread philosophical trends of the secularperspective are: sociobiologism, subjectivism, neoutilitaria-nism and neocontractualism. Even though they are quite dif-ferent from each other, they have in common the acceptan-ce of the physical dimension only, and the rejection of anyapproach that will transcend the material aspect of what isreal.

a) SSSSoooocccciiiioooobbbbiiiioooollllooooggggiiiissssmmmm considers the moral principles and va-lues which belong to a particular society in a particular histo-rical period, as the result of a sort of natural selection forthe natural adjustment of human life to the external world(the environment). When mans behaviour encourages theevolution of the species, then, it is considered positive (or,morally right): the tendency to sacrify respect for the indivi-dual in favour of the adjustment or improvement of thegroup (that is, the human species) in its totality is clear (5).

b) The theory of ssssuuuubbbbjjjjeeeeccccttttiiiivvvviiiissssmmmm (or, nnnnoooonnnnccccooooggggnnnniiiittttiiiivvvviiiissssmmmm) de-nies the existence of truth in ethics (the formula ethics wit-hout truth is well known). This trend falls into the mostabsurd irrationality: each moral choice can be neither true,nor false. In moral matters we cannot know what is true or

false: every action may be, at the same time, right andwrong, since it cannot be empirically verified. The neoposi-tivistic assumption is clear. Only what is (or can be) factu-ally verified is true or false. As moral action cannot be veri-fied, it is neither true nor false. Therefore the moral choiceis a decision or, better, an act of arbitrary individualisticwill. The moral judgment is, in the end, subjective: it is onlypossible to discuss the logical consistency, but the funda-mental principle of the moral choice is irrational. From herecomes the assumption of the absolute priority of the con-cept of selfdetermination, meant as individual freewill.Individualism is softened by the suggestion of the conceptof tolerance, meant, within the social context, in the weaksense of the respect for the arbitrary decision of others (6).

The theories of neoutilitarianism and neocontractualismtry to overcome the individualistic tendency through the se-arch for an ethical criterion that, if not universal, could at le-ast be based on a mutual intersubjective understanding.

c) NNNNeeeeoooouuuuttttiiiilllliiiittttaaaarrrriiiiaaaannnniiiissssmmmm is based on the ethical criterion ofwhat is socially useful. The fundamental moral principle isthe principle of utility or the greatest happiness princi-ple (defined by J. S. Mill, like Bentham before him (7)): acti-ons are right only if they tend to promote happiness (ple-asure or absence of pain; satisfaction of desires, preferencesor interests) and to avoid unhappiness (pain or privation ofpleasure; frustration of desires, preferences or interests).This principle, applied to society, means that the greatesthappiness (or good) is the optimization of what is pleasantand minimization of what is unpleasant for the greatestnumber of individuals. The cost/benefit ratio transposedfrom the egoistic to the collective level (this is the distincti-ve feature of this trend) leads to the identification of the me-asure of right and wrong in social utility (8).

d) The theory of nnnneeeeooooccccoooonnnnttttrrrraaaaccccttttuuuuaaaalllliiiissssmmmm allows the moral cho-ice to coincide with the contract, that is the agreementamong the moral agents (or moral actors) who constitu-te a peaceable moral community: the moral content is theresult of a decision shared by the community members. Inthis sense, the measure of right and wrong is conventional:it depends on the stipulation of the moral community (9).

From what has been mentioned here, a common featureof the secular conceptions emerges: the value of human lifeis not recognised in itself, but it is recognised only undersome conditions (or better, under the factual verification ofcertain conditions). Not all human beings are persons, thatis, are moral subjects (or, possessors of a valuable life)(10): not all human lives are considered worthy to be res-pected. Moral status is recognized only to some entities (hu-man or nonhuman) who are endowed with certain capaci-ties. But what makes life (human or nonhuman) valuable?Which are the necessary conditions of personhood?

Sociobiologists recognise the value of human life only if itimproves the evolution of the human species; subjectivistsconsider lives worthy of respect only if they show the capaci-ty of selfawareness, autonomy and selfdetermination (that isthe capacity to take a decision on their own); neoutilitariansacknowledge the moral status only to sentient individuals,that is, to individuals that possess the sensory capacity of fe-eling pleasure or grief; neocontractualists identify moral sub-jects in selfconscious and rational entities, capable of under-standing the notion of worthiness of blame and praise.

In other words, the respect for life is submitted to the ve-rification of certain empirical conditions: the survival andimprovement of the human species or the presence of certa-in capacities such as, perceptiveness, selfconsciousness, rati-onality and free will. But what if human life does not favourthe evolution of the species? And what if human life has notyet developed or is no longer able to exercise its sensitive,rational and/or volitive capacity?

The practical consequence of the secular theories isa strong discrimination between human beings: according tothe secular point of view, only some human lives need to be

3ME&B 2 (2) 1995

respected (in a moral and juridical sense). Not all humans arepersons, and, paradoxically, not all persons are humans.

There is a restriction of the meaning of the term per-son, as this cannot be assigned to all human beings: as infact, it cannot be assigned to subjects who could produce aninvolution of the species (this is the case with the defecti-ve newborn). It cannot be assigned to subjects who are notyet, or are no longer perceptive (zygotes and embryos untilthe nervous system is at least initially formed, as well as pe-ople who suffer brain damage that prevents them fromexercising any kind of sensory functions; or patients in thelast stage of illness who suffer too much) or to subjects whoare not yet or no longer selfconscious, rational and autono-mous (embryos, foetuses, infants, children, mentally retar-ded adults, hoplessly comatose, old people and the seriouslyhandicapped). The deferment of the beginning of a per-son and the anticipation of the end of a person, with refe-rence to their biological birth and death, imply a lack of res-pect within the so called boundary conditions (prenatal,neonatal and terminal life) and marginal cases (when lifeis seriously handicapped).

Paradoxically, the term person may be assigned to non-human beings, like animals (as they can feel and perceive)or robots and artificial intelligences (as they exercise rati-onality and selfdetermination).

The critics of the secular perspective point out that thedefinition of the line between humans and persons is arbi-trary: the contribution to the improvement of the species orthe factual verification of certain behaviours are, inevitably,reductive criteria.

Who decides what is evolutive or involutive for the hu-man species? How could we objectify sensitiveness, whichis structurally a subjective experience? How could we iden-tify what is useful for society in its totality (what is usefulfor society could be not useful for an individual)? Why areindividuals who no longer exercise (or never exercised)certain functions not worthy of respect? A sleeping indivi-dual or an alcoholic (who do not exercise personal capaci-ties at the moment): are they persons or are they not?

2222.... Many questions remain without answer. This is whythere emerges the necessity of a philosophical point of viewthat justifies respect for human life in all its aspects. Here isthe role of ppppeeeerrrrssssoooonnnnaaaalllliiiissssmmmm (11). According to the personalisticconception in bioethics human life must be respected fromthe moment of conceiving (the fusion of the gametes) untilthe moment of total cerebral death. We are talking about theoooonnnnttttoooollllooooggggiiiiccccaaaallll ppppeeeerrrrssssoooonnnnaaaalllliiiissssmmmm that goes back to St. Thomas Aqu-inas, reconsidered by J.Maritain (12). This remark is impor-tant in order to avoid misundertandings with other persona-listic conceptions like dialogical or existentialistic persona-lism, which tend towards subjective solutions.

Ontological personalism considers the person as thecentre of bioethics. The clearest expression of the conceptof person according to ontological personalism has beenworked out by Boethius, and then reexamined by St.Thomas(13): the person is individua substantia rationalis natu-rae. There are three elements that identify a person: I. sub-stance; II. individuality and III. rationality. Each point requ-ires to be analyzed.

I. Substance indicates the act of being that has in itselfthe reason of its own being: substance means the presenceof an ontological substratum that trascends the mere joiningof the parts and goes beyond the acts (it is the metaphysicalprinciple: the whole is more than the sum of parts and acts).

II. The individual aspect specifies the principle of distin-ction of every existing human being: our body, or still bet-ter, our genetic code makes us unique.

III. Rationality refers to a feature which belongs to theessence (or the substance or nature) of a human being,even if the human being is not able to exercise it at any gi-ven moment.

Simply because of the fact that a human being is (thatis, exists), he/she is a person, apart from the capacity ofimproving the species or of behaving in some particularways, apart from the capacity of exercising perceptive-ness, selfawareness, rationality and will at the moment. Hu-man beings are much more than their own acts: the per-son is much more than the sum of the acts performed(perceptions, thoughts or wishes): the person trascendsthem. Human beings are one physical, psychic and spiritu-al totality: the metaphysical element is the condition of thephysical and psychic element. In short, the theory of per-sonalism justifies the identification between the humanbeing and the person. All human beings are persons isa statement that appears obvious, but, it needs to be philo-sophically justified, as the secular positions have openeda discussion about it.

According to the theory of ontological personalism allhumans have a personal status: zygotes, embryos, foetuses,the newborn and children are all persons, as they all po-ssess in nuce (potentially) all those elements that developand allow them to become accomplished human beings. Inthe same way, the elderly, the handicapped, the insane andthe terminally ill are all persons, even if they do not per-form some particular actions. The biological cycle of humanlife is an expression of the personal human life: every singleexpression of human life must be respected and protected.

The personalistic theory, based on the ontological founda-tion of the concept of person, assigns the personal ordinan-ce to the human being as it recognises the existence of a uni-tary and permanent centre that transcends outward manifes-tations and behaviours. On the contrary, the antipersonalis-tic (or secular) approach recognises the personal ordinanceof some human beings only (and, of some nonhuman be-ings) on the basis of an empirical verification of behaviours.

On a practical and applicative basis, the ontological per-sonalistic conception (in the metabioethical field) makespossible the respect for human life in all its aspects. On thebasis of the ontological concept of person it is possible tojustify tttthhhheeee ffffuuuunnnnddddaaaammmmeeeennnnttttaaaallll pppprrrriiiinnnncccciiiipppplllleeeessss ooooffff ppppeeeerrrrssssoooonnnnaaaalllliiiissssttttiiiicccc bbbbiiiiooooeeeetttthhhhiiiiccccssss:a) the fundamental value of life; b) the principle of totalityor therapeutic principle; c) the principle of freedom andresponsibility; d) the principle of family; e) the principle ofsociality and assistance.

a) TTTThhhheeee ffffuuuunnnnddddaaaammmmeeeennnnttttaaaallll vvvvaaaalllluuuueeee ooooffff pppphhhhyyyyssssiiiiccccaaaallll lllliiiiffffeeee indicates thatlife is not at our disposal and is sacred. This conception isstrictly connected to the ontological conception of corpore-ity: our body cannot be simply reduced to an instrument oran object (Korper); it is not a group of cells and neutrons.The physical and psychic dimensions do not complete thehuman being. Our body is subject (Leib), as it is where theperson, considered as one transcendent totality, is revealed.Our mind organizes our brain and our soul gives life to ourbody. The rejection of any form of suppression of humanlife (abortion, euthanasia, suicide ecc.) is strictly related tothe conceptions expressed here above.

b) According to the tttthhhheeeerrrraaaappppeeeeuuuuttttiiiicccc pppprrrriiiinnnncccciiiipppplllleeee, the medicalact (or any other act which interferes with human life) mustconsider the patient in his totality. If our body is a unitarywhole, any intervention on the part must keep in conside-ration the whole (which is, qualitatively speaking, morethan the sum of the parts). The therapeutic principle justi-fies intervention on human life only if the intervention is di-rected to the actual disease (or to the active cause of the di-sease), which otherwise could not be cured, having not onlythe concrete hope of a positive result, but also the pa-tients consent. The therapeutic principle is not onlyapplied to surgical operation, but also to the gene therapy oftests on human embryos, sterilization and organ transplants.

4 ME&B 2 (2) 1995

c) TTTThhhheeee pppprrrriiiinnnncccciiiipppplllleeeessss ooooffff ffffrrrreeeeeeeeddddoooommmm aaaannnndddd rrrreeeessssppppoooonnnnssssiiiibbbbiiiilllliiiittttyyyy derive di-rectly from the fundamental value of life. To be free doesnot coincide with selfdetermination: to be free does notmean the possibility of exercising free will in an absoluteway. On the contrary, an absolute freedom coincides withan imposition of force which inevitably causes violence andconflicts. Every act of freedom is real only if it is based onthe idea of responsibility in the sense of respondere or be-ing responsible for our own acts towards ourselves and to-wards all other human beings.

Freedom can be proved true only if other human beingsare respected in their right to be free, but this means thatalso their life must be respected as well as their freedom.Man cannot be free if he is not alive: freedom presupposeslife. To be free does not mean that we can decide to havechildren at all costs (accepting an indiscriminate use ofartificial techniques) or decide that our life is not worth li-ving (signing the Living will). To be free means to makeresponsible choice for ourselves and for others.

d) TTTThhhheeee pppprrrriiiinnnncccciiiipppplllleeee ooooffff ffffaaaammmmiiiillllyyyy refers to the necessity for eachindividual to live in the family to establish his/her identity.Family, in the Aristotelian sense, is the natural community inwhich the individual can recognise his/her specific role. Fa-mily is the first community in which the individual relatesto others, acquiring his/her identity. Heterologal inseminati-on and ectogenesis are techniques which operate against fa-mily in this sense.

e) TTTThhhheeee pppprrrriiiinnnncccciiiipppplllleeee ooooffff ssssoooocccciiiiaaaalllliiiittttyyyy consists in promoting lifeand health in our society through the promotion of life andhealth of every single human being. The concept of socialityis aimed at reaching the common good through the conside-ration of the individual good. The principle of sociality issupported by the pppprrrriiiinnnncccciiiipppplllleeee ooooffff aaaassssssssiiiissssttttaaaannnncccceeee towards whoeverneeds help and support. The principles of sociality andassistance come from the duty of mutual respect based onthe dignity of others as human beings: the person is the so-urce and aim of society and the act of being a person is reve-aled by taking part in the common good. The principlesmentioned here are related to the problem of health andeconomic policies (allocation of resources etc.).

Personalism gives a very important philosophical contribu-tion to bioethics (or better, to metabioethics): the ontologicalconcept of the person provides a deeper understanding formoral and juridical reflections in bioethics which are respec-tful of all human beings without any discrimination.

NNNNooootttteeeessss aaaannnndddd rrrreeeeffffeeeerrrreeeennnncccceeeessss

(1) We can not talk of bioethics only, but, before that,we must talk about bioethics. Bioethics presupposesmetabioethics.

(2) E. Sgreccia: Manuale di bioetica. Vita e Pensiero, Mila-no 1991, Vol. III.

(3) M. Stocker: Plural and conflicting values. ClarendonPress, Oxford 1990.

(4) It is a statement which goes back to Grotius, who isconsidered the first modern and secular philosopher.

(5) E. O. Wilson: Sociobiology: the new synthesis. ThePresident and fellows of Harvard College, Harvard 1975.

(6) Noncognitivism is a radical subjectivism, which gaverise to two trends: decisionism and emotivism. The firstmay be identified with H. Kelsen and, in Italy with U. Scar-pelli; the second with A. J. Ayer and C. L. Stevenson.

(7) J. S. Mill: Utilitarianism. First published in 1861, re-printed in A. Ryan (ed.): Utilitarianism and other essays. Har-mondsworth, Penguin 1987, p. 278.

(8) P. Singer: Practical ethics. Cambridge UniversityPress, Cambridge 1973; Animal liberation: a new ethics ofour treatment of animals. New York Review Random House,

New York 1975; Applied ethics. Oxford University Press,Oxford 1986; J. Harris: The value of life: an introduction tomedical ethics. Routledge & Kegan Paul, London 1985; M.Tooley: Abortion and infanticide. Philosophy and PublicAffairs, Fall 1972, 2, No. 1.

(9) T. H. Engelhardt: Foundations of bioethics. OxfordUniversity Press, New York 1986; D. Parfit: Reasons and per-sons. Oxford University Press, New York 1984.

(10) The concept of person must be seriously examinedin bioethics as the moral and juridical debate of our days isbased on determination of it. The assiological and juridicalmeaning to be assigned to the term itself is unanimouslyaccepted: the person must be morally respected and juridi-cally protected. But there is disagreement about the me-aning of the concept itself. M. Goodman (ed.): What is a per-son? Humana Press, Clifton (New Jersey), 1988.

(11) E. Sgreccia: Manuale di bioetica. cit.(12) St. Thomas Aquinas: Summa Theologica. J. Maritain:

Les droits de lhomme at la loi naturelle. Editions de la Ma-ison Francaise, New York 1942.

(13) S. Boethius: De persona et duabus naturis. ContraEutychen et Nestorium, III, 4 5.

LLLL.... PPPPaaaallllaaaazzzzzzzzaaaannnniiii:::: TTTThhhheeee EEEEtttthhhhiiiiccccaaaallll DDDDeeeebbbbaaaatttteeee iiiinnnn BBBBiiiiooooeeeetttthhhhiiiiccccssss:::: CCCCoooonnnnttttrrrriiiibbbbuuuuttttiiii----oooonnnn ooooffff PPPPeeeerrrrssssoooonnnnaaaalllliiiissssmmmm////EEEEttttiiiicccckkkk ddddeeeebbbbaaaattttaaaa vvvv bbbbiiiiooooeeeettttiiiikkkkeeee:::: pppprrrrssssppppeeeevvvvooookkkk ppppeeeerrrrssssoooo----nnnnaaaalllliiiizzzzmmmmuuuu, MMMMEEEE&&&&BBBB,,,, 2222((((2222))))1111999999995555,,,, pppp.... 1111 5555.... Prca podva prehado dvoch hlavnch smeroch prtomnch v rmci sasnej bi-oetiky: o sekulrnej a personalistickej koncepcii. Prv sasna zdvodni morlne rohodnutia autonmne a empiric-ky, odvolvajc sa vlune na loveka. Kad jednotlivec pri-jma vlastn (skromn) morlne rozhodnutia, bez ohaduna existenciu Boha alebo transcendencie. Sekulrna metdauvaovania je faktick (alebo empirick), kee podanej pravda zvis od empirickej verifikcie faktov: pravda(a nadovetko morlna pravda) me by len fyzick (niemetafyzick). Je tie kalkulan, kee racionalita sa redu-kuje na hadanie logickej konzistentnosti a koherencie argu-mentov. Prspevok v krtkosti komentuje najrozrenejiesasn smery vychdzajce zo sekulrneho prstupu: socio-biologizmus, subjektivizmus, neoutilitarizmus a neokontrak-tualizmus. V alom sa venuje charakteristike ontologick-ho personalizmu ako filozofickho prstupu, ktor odvod-uje repektovanie udskho ivota vo vetkch jeho aspek-toch. Poklad osobu za stredn bod bioetiky. Na zkladeontologickej koncepcie osoby mono zdvodni zkladnprincpy personalistickej bioetiky: a) zkladn hodnota ud-skho ivota, b) princp totality, alebo terapeutick princp,c) princp slobody a zodpovednosti, d) princp rodiny, e)princp sociality a pomoci. Najdleitejm filozofickmprspevkom personalizmu pre sasn bioetiku (alebo,lepie, metabioetiku) je ontologick koncepcia osoby:umouje hlbie pochopenie morlnych a prvnych posto-jov, ktor repektuj vetky udsk bytosti bez diskrimi-ncie. (Abstrakt redakcia.) Kov slov: sasn bioetika,metabioetika, ontologick personalizmus, sekulrne smeryv bioetike

Received: Sept. 7, 1994.Accepted: Oct. 15, 1994.

Address for correspondence: Dr. L. Palazzani, Institute forBioethics, Catholic University the of Sacred Heart, LargoFrancesco Vito 1, 00168 Rome (Italy)

AAAA ddddooooccccttttoooorrrr mmmmuuuusssstttt aaaallllwwwwaaaayyyyssss bbbbeeeeaaaarrrr iiiinnnn mmmmiiiinnnndddd tttthhhheeee oooobbbblllliiiiggggaaaattttiiiioooonnnn ooooffffpppprrrreeeesssseeeerrrrvvvviiiinnnngggg hhhhuuuummmmaaaannnn lllliiiiffffeeee....

AAAA ddddooooccccttttoooorrrr oooowwwweeeessss ttttoooo hhhhiiiissss ppppaaaattttiiiieeeennnntttt ccccoooommmmpppplllleeeetttteeee llllooooyyyyaaaallllttttyyyy aaaannnndddd aaaallllllllrrrreeeessssoooouuuurrrrcccceeeessss ooooffff hhhhiiiissss sssscccciiiieeeennnncccceeee....

International Code of Medical Ethics, WMA

5ME&B 2 (2) 1995

PPPPAAAATTTTIIIIEEEENNNNTTTT AAAASSSS AAAA PPPPEEEERRRRSSSSOOOONNNN

M. Nemekov

Department of Nursing and Humanities, Jessenius Faculty ofMedicine, Comenius University, Martin (Slovak Republic)

AAAAbbbbssssttttrrrraaaaccccttttThe paper presents a didactic model of a lecture on a con-

crete medical ethical problem, which is given to the medicalstudents. The goal of the teaching programme is to improve theability of students in understanding the problems of oncologypatients, as well as other patients with incurable diseases. Onthe basis of a moral reflexion while facing an extreme life situ-ation of the patients students are encouraged to find their ownways with respect to possible personal contribution to the wel-fare of their patients.

Key words: the patient as a person, spiritual dimension ofhuman life, patients feelings, spiritual needs

Where is the love of man there is also the love of art.(Hippokrates)

We present here briefly the scheme of a programme on medi-cal ethics developed for medical students, which tries to exposemore specifically the needs of patients with malignant, or otherincurable diseases. The programme is given as a lecture followedby discussion.

TTTThhhheeee aaaaiiiimmmm ooooffff tttthhhheeee pppprrrrooooggggrrrraaaammmmmmmmeeee: (1) To help students in under-standing better oncology patients and patients with other seri-ous incurable diseases on the basis of own moral reflexion ofan extreme life situation. (2) To provide the students witha model ethical framework for determining doctors generaland specific obligations, as well as for finding their own perso-nal ways of contribution to the welfare of these patients.

PPPPrrrrooooggggrrrraaaammmmmmmmeeee oooovvvveeeerrrrvvvviiiieeeewwww: 1. Introduction. 2. How the personcan be described ? 3. The spiritual dimension of person. 4. To-pics of discussion. 5. Conclusion.

1111.... IIIInnnnttttrrrroooodddduuuuccccttttiiiioooonnnn. The diagnosis of cancer, or other life thre-atening disease may often provoke a serious life crisis in the pa-tient. The apparent loss of meaning and future perspectives oflife frequently undermines previously unquestioned trust in re-ality. Self-esteem, self-confidence, and also religious faith mightbe shaken, while relationships to other persons could be bro-ken or hampered by the uncertainty of patients future. Many ofthe formerly effective coping strategies become inadequate inthe new situation. Concurrent diseases, progress of the malig-nant disease itself, as well as the therapies used are more or lessconnected with a considrable distress, pain, other physical sym-ptoms and the stress of repeated hospitalizations. All this toget-her usually aggravates a rising sense of aloneness, unhappiness,hopelessness; bringing about a deep multifaceted personal cri-sis (including spiritual one) (2).

2222.... TTTThhhheeee ppppeeeerrrrssssoooonnnn can be described as a complex entity, that me-ans an integrated (human) being, who altogether is more thanjust the sum of his/her biological, psychosocial, and spiritual di-mension. Each dimension is a reflection of the whole personand can be defined as a set of universal human needs. When allthe needs are met the result is a complete health. When someneeds are not met properly, the result might be the sickness, orat best the absence of an actual illness (2).

3333.... TTTThhhheeee ssssppppiiiirrrriiiittttuuuuaaaallll ddddiiiimmmmeeeennnnssssiiiioooonnnn ooooffff ppppeeeerrrrssssoooonnnn can be defined as thehuman capacity to transcend self, which is reflected in basicspiritual needs:

aaaa)))) The need for sssseeeellllffff----aaaacccccccceeeeppppttttaaaannnncccceeee, a trusting relationship withself based on sense, purpose and meaning of life. Human attitu-des are based on value systems, that are influenced by theirenculturation, and also on the experience gained during life,that are interpreted in terms of that enculturation. In our cultu-re, the basic value and personal priority is to be successful, tohave the achievement of an aim or purpose. Self-acceptance isconnected with a self-respect and the conception of dignity.

bbbb)))) The need for the rrrreeeellllaaaattttiiiioooonnnnsssshhhhiiiippppssss wwwwiiiitttthhhh ooootttthhhheeeerrrrssss, characterizedby a non-conditional love, trust and forgiveness. The isolationof patients from their families and communities make their suf-fering worse.

During the time when a person is assuming the role of a pa-tient, other role relationships, such as those of a parent, spouse,

employee or a student, may temporarily become interrupted.Occasionally, role reversals occur. For example, a self-suppor-ting independent father may suddenly have to be cared for byhis children. Patients must learn a new role, a new language/hospitalese/, a new life-style. Often they will have to finda new meaning of their life.

cccc)))) The need for rrrreeeellllaaaattttiiiioooonnnnsssshhhhiiiipppp wwwwiiiitttthhhh aaaa ssssuuuupppprrrreeeemmmmeeee ooootttthhhheeeerrrr (e.g.God).

Patient in a spiritual crisis, which is connected with a seriousdisease can loose his or her religious belief. On the other hand,the crisis could make the religious belief more strong.

dddd)))) The nnnneeeeeeeedddd ffffoooorrrr hhhhooooppppeeee, that is the need to imagine and partici-pate in the enhancement of a positive future. Many patientshave negative expectations from their future. They are suffe-ring from an anxiety of different origin (2, 3).

4444.... TTTTooooppppiiiiccccssss ffffoooorrrr ddddiiiissssccccuuuussssssssiiiioooonnnn:::: aaaa)))) Moral dilemma: Conflicts betwe-en beneficence and autonomy. bbbb)))) Disclosure of information,understanding. How information is to be conveyed to the pa-tient? cccc)))) Sources of anxiety (biological, social, moral and spiritu-al).

5555.... CCCCoooonnnncccclllluuuussssiiiioooonnnn.... A more contemporary version of ethical ques-tions concerning medical profession has shifted from the oneof its character to the one of a practical conduct - What shoulda doctor do? Autonomy, information and respect, all together,form the crux of current ethical views of the doctor-patient re-lationship. Morality requires not only that you treat the personsautonomously and refrain from harming them, but also that youcontribute to their welfare. An outcome which now or in thefuture would be regarded by the patient as worthwhile (1). Noethical or legal requirements concerning the attitudes of healthprofessionals to the patients will be effective without the willin-gness of those who have the knowledge and power to be con-stantly critical of their own practice and always open to a per-ception of the needs of the individual patients (1). As a traditi-onal medical saying puts it: To cure sometimes, to relieveoften, to comfort always.

TTTTrrrraaaaiiiinnnniiiinnnngggg ddddeeeevvvviiiicccceeeessss: slide projector, desks: Vincent van Goghand his pictures (a spiritual crisis explained by the story of hislife).

RRRReeeeffffeeeerrrreeeennnncccceeeessss[1] Campbell, A., Grant, G., Gareth, J.: Practical Medical Ethics.

Oxford University Press, Oxford 1992, 177 p., p. 11, 23. [2] Hig-hfield, M. F.: Spiritual health of oncology patients. Cancer Nursing,1992, 15/1, p. 1 - 8. [3] Nemekov, M., Palenr, M., Kavcov, E.:The oncologic patient as a personality. Slovensk lekr, 1995, No. 5 -6, p. 6 - 11.

Address for correspodence: Dr. M. Nemekov, MA, PhD., Depart-ment of Nursing and Humanities, Jesenius Faculty of Medicine, Co-menius University, Sklabinsk 26, O37 53 Martin, Slovak Republic

TTTTaaaabbbblllleeee:::: TTTThhhheeee ppppaaaattttiiiieeeennnntttt aaaassss aaaa ppppeeeerrrrssssoooonnnn ---- ffffrrrraaaammmmeeeewwwwoooorrrrkkkk ooooffff tttthhhheeee pppprrrroooobbbblllleeeemmmm

TTTT HHHH EEEE PPPP AAAA TTTT IIII EEEE NNNN TTTT AAAASSSS AAAA PPPP EEEE RRRR SSSS OOOO NNNNSociocultural context Jewish - Christian traditionof behaviour : (Islamic or Eastern traditions)

SSSS OOOO CCCC IIII AAAA LLLLSOCIAL ROLES STYLE OF LIFE SOCIAL STATUSpatient inactivity often lowerparent, spouse isolationemployee violation of privacy

SSSS PPPP IIII RRRR IIII TTTT UUUU AAAA LLLLself-conscious I

E Center self-control NM of Person self-respect TO ET Self-importance: LI attitude - to death LO - to life sense of life EN purpose in life CS value system and meaning of life T

the willBBBB IIII OOOO LLLL OOOO GGGG IIII CCCC AAAA LLLL ((((bbbbooooddddyyyy)))) [3]

PPPPAAAATTTTIIIIEEEENNNNTTTTSSSS FFFFEEEEEEEELLLLIIIINNNNGGGGSSSS::::fear and anxiety hopelessness hopesadness disgrace faith, beliefuneasiness dishonour trustrestless, disturbance misprision

pain, suffering [3]

VUKA MEDICNSKEJ ETIKY

TEACHING OF MEDICAL ETHICS

6 ME&B 2 (2) 1995

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PPPPAAAARRRREEEENNNNTTTTHHHHOOOOOOOODDDD AAAANNNNDDDD CCCCLLLLIIIINNNNIIIICCCCAAAALLLL GGGGEEEENNNNEEEETTTTIIIICCCCSSSS

Helene Watt

The Linacre Centre for Health Care Ethics, London

It is natural for parents, and potential parents, to be con-cerned about the health of existing children, and of the chil-dren they may have in the future. However, the way parentsact on this concern will differ widely, depending, first, ontheir view of the moral demands of the parentchild relati-onship, and secondly, on their beliefs as to when the pa-rentchild relationship, with the moral demands whichform a part of that relationship, can be said to begin.

In this talk, I will be referring to one model of the pa-rentchild relationship as the gift model. In referring tothe gift model I am referring to a view according to whichchildren are seen as gifts to be accepted unconditionally bytheir parents at every stage of their lives, and not at any peri-od of their lives as products subject to quality control andrejection. I will argue that the attitude of parents tendsincreasingly to be closer to a product view of children, atleast for some period of their lives, then it is to the giftview according to which children are to be accepted at eve-ry stage of their lives.

Many people, if asked how parents should behave towar-ds their children, would say that parental acceptance shouldnot be conditional on the state of health of their children or indeed on neutral feature of their children such as sex,height, etc. That is, children should not have to meet theexpectations of their parents before they are treated as thechildren of their parents, with the rights which that relati-onship entails. On the gift view children of all ages are seenas having a moral status not inferior to that of their parents,or of any other human being. Immature human beings mustbe accepted as the individuals they are, just as mature hu-man beings must be accepted as the individuals they are. Ofcourse, all would agree that seriously ill children will some-times need to be cared for by adoptive or foster parents oreven institutions, if the birth parents are simply unable tomeet the needs of these children. Howeer, a choice to giveup ones child on the grounds that one cannot meet his orher needs should be seen not as rejection of the child whoseneeds one is unable to meet, but rather as the delegation ofresponsibility for that child. A mother who gives up a childfor adoption because she cannot meet the needs of thatchild together with those of the rest of her family is not re-jecting her child, or treating her child as less than human,but providing for her child in the way which best respondsto the needs both of that child and of the rest of the family.

Most people feel some inclination towards the view thatchildren should be treated as children by their parents: thatis, that they should not be rejected, or treated as less thanhuman, on the grounds that they do not meet their parentsexpectations.

However, while most feel strongly drawn to take thisview with regard to later phases of the parentchild relati-onship, there is a growing tendency to take another viewwith regard to earlier phases of the parentchild relation-ship, or to postulate some other exception to the principle

of unconditional acceptance of children by their parents.Clinical genetics is itself very largely responsible for this

shift in attitude on the part of parents. For while it is true thatclinical genetics responds, to a certain extent, to preexistingdesires and fears on the part of parents and potential parents,it also creates a demand for the services it offers, some ofwhich are, and some of which are not, compatible with theunconditional acceptance of all existing children.

Parents are not encouraged by the widespread availabilityof prenatal diagnosis to regard the unborn as children to beunconditionally accepted. The availability of prenatal diagno-sis with a view to abortion if the foetus is found to havesome handicap presupposes that the pregnant woman hasa right to exercise a very high degree of control over herunborn child, or over what is sometimes called the productsof conception. While it is possible to undergo prenatal diag-nostics with a view to prenatal or postnatal treatment of thechild, it is usually with a view to possible abortion that prena-tal diagnostics is undergone. Since many prenatal tests invol-ve a not inconsiderable risk of causing a miscarriage, it tendsto be those parents who would contemplate abortion if thefoetus were found to have some handicap who make use ofthese tests. Parents sometimes feel that they are morally obli-ged to make use of whatever tests are available, althoughmany parents particularly mothers experience considera-ble stress in relation to these tests. Other parents, while theydo not feel obliged to make use of prenatal tests, will nonet-heless desire to make use of them in the interests of ensuringthat the mother does not give birth to a handicapped child.

There are three main arguments put forward in favour ofprenatal screening with a view to possible abortion. The fir-st argument (often found in combination with one or bothof the others) is that the embryo and/or foetus is a productof conception which is being used to make a child, so thatthe embryo or foetus need not be treated as if it were alre-ady a child, but instead should be treated as what it is a product in the making. Those who claim that parents haveunlimited control over the process of producing childrenmay also claim that the control of embryos and/or foetusesconstitutes control over the production of children, ratherthan over existing children.

The first objection to this view is that parents should notfeel they have unlimited control even over the productionof children. Indeed, they should not think of themselves asproducing children at all, but rather as receiving children asgifts which result from their unreserved giving of themsel-ves to each other. In cases where children are literally pro-duced by the putting together of biological materials, as invitro fertilization, it is harder for parents to treat these chil-dren as human beings with human rights, when they havecome into existence in a way more appropriate to manufac-tured products. In contrast, when children result not froman act of production, but from an act of committed love, andthere has been no attempt on the part of the parents to pre-vent this act from generating life, parents will find it easierto welcome any child they do conceive. In other words,some forms of control over the generation of children aremore in keeping with the dignity of children than others and this is true whether the child originates at fertilization,or at some later time.

The second objection to the view that the embryo isa product in the making, and therefore can be rejected if fo-und to be defective, is that the embryo is not, in fact, in theprocess of being used make a human being, but is alreadya human being, because it is already a human organism. Fora human being, or person, is not something other than a li-ving human organism a living human whole. A human be-ing is not something like a car, which comes into existenceby degrees: rather, it is a living human whole, which is eitherthere or not. Nor is a human being some nonbodily entitywhich joins or replaces the human organism during somestage of its life. A human being is an organism: something

MATERILY Z KURZOV MEB

MATERIALS FROM COURSES OF IMEB

7ME&B 2 (2) 1995

which is, at least in part, a bodily entity. As soon as there isa living, selforganzing whole, of a kind which may grow tobe an adult, there is a being with morally significant interestsin his or her long and shortterm fulfillment. There is nowsufficient evidence that most human beings, or human orga-nisms, come into existence at fertilization, although a smallminority come into existence later as the result of identicaltwinning. If we accept that human beings are human orga-nisms, and that human organisms begin, in most cases, at fer-tilization, then we must either accept that human embryosare human beings with human moral status, or say that somehuman beings have human moral status, while others do not.But to recognize human moral status only in those humanbeings who have reached some arbitary level of develop-ment is to be arbitrary about who are the subjects of justice an arbitrariness which fails to recognize the very nature ofjustice as a nonarbitrary system. Human beings are equal intheir basic human dignity: there is no such thing as a humanbeing with subhuman moral status.

If the unborn including the handicapped unborn arehuman beings with basic human rights, certain lines of argu-ment often used to defend the rejection that is, the des-truction of the handicapped unborn are clearly doomed tofailure. One such line of argument is that which focusess onthe needs and wishes of the parents: for example, on thestrain a disabled child may cause to his or her parents ma-rriage, or to their lifeplans in general. It may be claimedthat if the parents are not obliged to care for the child whowill be handicapped, they will be enabled to have another,healthy child, so that the abortion of the child who will behandicapped is a means to replacing that child with a childwho will be healthy.

However, it is clear that this kind of reasoning is entirelyinappropriate if the unborn are human beings with basichuman rights. To kill a child with a handicap, in order tospare his parents the burden of and/or to replace that childwith another one would be a violation of the human rightsof the handicapped child. For human beings are not replace-able, in any real sense of the word, but have rights and inte-rests which cannot be transferred, and which moral agentsmust respect. The rights of moral agents themselves are limi-ted here as elsewhere by the rights of those who will beaffected by their actions. The humane response to the heavyburden of care which may be faced by the parents of a han-dicapped child is to help the parents with this burden ofcare, rather than to end the life of the child. Moreover, to re-gard the handicapped child as nothing more than a burdento its parents is to fail to recognize the fact that a handicap-ped child also offers a new opportunity for family love andparental fulfillment.

If an unborn child is a human being, it will not be possibleto defend abortion for handicap to spare the parents the bur-den of his care. Similarly, if the unborn child is a human be-ing it will not be possible to defend abortion for handicap onthe grounds that this will spare society a significant financialburden. Certainly, the care of disabled children can beexpensive, as can the care of older people, terminal patients,AIDS patients, etc. However, if the unborn child is a humanbeing the proposal to abort it in order to save money is clear-ly unworthy of consideration by a civilized society.

It is interesting that even those who argue for a high de-gree of control over unborn children on the part of their pa-rents will often admit that unborn children are children:that is, that there is some kind of parental relationship bet-ween the parents and their unborn child. For example, it isincreasingly accepted that abortion for handicap can causelasting distress to the woman who has the abortion, who isoften described even by those who defend abortion asgrieving for her child. This recognition of the fact that theunborn child is a child for whom the mother grieves is noteasy to reconcile with the way in which the life of the unornchild is thought to be at the mothers disposal.

The most persuasive attempt to reconcile the view of thechild as a child with the view of the child as disposable is fo-und where it is claimed that in agreeing to the abortion, themother is acting, like any good mother, in the best interestsof the child. There are those who believe that it is someti-mes the duty of a mother to abort her unborn child, if thechild is diagnosed as suffering from some very serious dise-ase. On this theory it is not simply up to the mother whetheror not she has an abortion: rather, her decision must makesome kind of reference to the best interests of the child.

This brings us to the third reason often put forward indefence of abortion for handicap a reason also used to de-fend euthanasia of older human beings. This is the reasonthat life with certain handicaps is, on balance, not worth li-ving, so that it is an act of mercy to end the lives of thoseaffected by these handicaps. Sometimes it is claimed thatthose affected are so badly affected as not to be human bein-gs with human moral status; other times it is claimed thatthose affected are human beings with human moral status,but human beings whose life has no value. Those who advo-cate euthanasia for those including rational adults who-se prospects are sufficiently poor may claim that they arenot refusing to recognize the humanity of the foetus by allo-wing what amounts to foetal euthanasia. For unlike thosewho see the human being as disposable only at some earlystage of his or her life, such people see the human being asdisposable at every stage of his or her life, providing that hu-man beings prospects are sufficiently poor.

Defences of abortion and euthansia on the grounds thatsome human lives have no value generally fail to make animportant distinction between the subjective value of thelife of the person the value to that person and the objec-tive value of the life of that person. The difference betweensubjective and objective value can be illustrated by referen-ce to the case of a person who is suicidally depressed. Sub-jectively his life seems to him to have no value; however, hisfriends and family may believe that his life has nonethelessan objective value, which they want him to appreciate. Inother words, they may claim not that they value the life ofthis person, but that his life is objectively valuable, even tho-ugh he does not feel its value.

In the case of prenatal diagnosis, the subjective, as oppo-sed to the objective value of the life of the unborn child willnot be easy to predict. Care should be taken not to makepredictions which are unduly pessimistic. A life which a he-althy adult regards as intolerable for example, a life confi-ned to a wheelchair may be valued by the handicappedchild no less than the life of anyone else. Where the childhas a mental handicap, there may be still less reason to sup-pose that the child will find his life unsatisfactory. Abortionis frequently carried out on children with Downs Syndro-me: a condition compatible with a very happy life on thepart of the child with Downs, who may have a greater or les-ser degree of mental handicap.

But more importantly, quite apart from the subjective va-lue of the life of the child the extent to which he valueshis life there is also the objective value of the life of thechild. For it can be claimed that all human life has a certaincore value even in the most unpromising conditions: thatit is part of what we mean by human dignity that the veryexistence of the human being is in itself valuable. It seemsincongruous to claim both that human beings are equal intheir basic moral dignity, and that some human lives haveno value, and perhaps a disvalue. It is more natural to acceptthat the the existence of those with human dignity has valuein itself, although some human beings have more, and oth-ers less, of the other goods of life. To say that all human be-ings are equal in their basic dignity is to say, first, that thevery existence of all human beings is objectively good, andsecondly, that all human beings have an interest (thoughthis interest may not be fulfilled in their lifetime) in theadditional objective goods which a human life can offer.

8 ME&B 2 (2) 1995

Parents who recognize that their children, at any age andwith any form of handicap, have lives of value, are recogni-zing that their children are equal in dignity to themselves.Those who recognize before their children are born thattheir children have this basic dignity will find it easier to re-cognize this dignity after they are born. For this reason, tho-se who argue in favour of abortion for handicap, but whowant children after they are born to be accepted by their pa-rents and society, are attempting to promote two incompati-ble attitudes conditional and unconditional acceptance on the part of parents and society. The rejection of handi-capped children will not only affect the way in which theolder handicapped are regarded, but it will also affect theway in which all children are regarded. Parents will be enco-uraged to think of children as acceptable only in so far asthey happen to want them, rather than being prepared,even in advance of conception, to welcome any child theymay conceive.

Children need the security of knowing that their parentsaccept them as the individuals they are: a security whichthey are more likely to find if their parents have always beencommitted to accepting and caring for them from thetime they were conceived. The parents themselves will be-nefit gretaly from making this type of commitment. Theywill benefit in the very deepest sense, in that they will stren-gthen in themselves the dispositions which make themgood and loving people. If their children do have some han-dicap, the parents will have a more difficult task in life thanmany people; however, they will also have opportunities todevelop as human beings which others do not.

I have focussed so far on prenatal diagnosis and rejectionof handicapped children: an area which, it must be said, lo-oms very large in clinical genetics. However, this is not, ofcourse, the only possible application of genetic knowledge.It is perfectly reasonable to take certain steps to diminishthe incidence and/or reduce the gravity of serious geneticdiseases. The fact that something good such as personalgrowth can come out of something bad, such as geneticdisease, is no reason not to seek to prevent what is unde-niably bad in itself.

The first way in which this can be done is, of course, bycarrier diagnosis, so that those diagnosed as carriers can usethis information to choose their marital partners or plantheir families, if they are already married. A couple who deci-de to avoid the conception of a child who will be serioslyhandicapped need not believe that, if they did conceivea child with this handicap, the life of this child would haveno value. Rather, the couple may believe that, despite the va-lue of the life of the child, this life will involve or bring aboutdisvalues (for example, pain to the child, sadness to the pa-rents) which they are justififed in avoiding, through avoidingthe conception of that child. Such a couple may realize thatif, despite their efforts, such a child is conceived, the value ofthe life of that child demands their unconditional respect.

Does a couple ever have a duty not simply a right toseek, by ethical means, to avoid the conception of handicap-ped children? The moral right to have children should notbe thought to be absolute to apply to absolutely anyone.Rather, it should be seen as applying to married coupleswho are committed to each other and to caring for the chil-dren they conceive. All married couples should be willing tomeet, as far as they can, the postnatal, as well as the prenatalneeds of any children they conceive. If a couple is planningto conceive a child who is very likely to be seriously handi-capped, they should ensure that they are able to meet theneeds of the child to some reasonable extent (with the re-asonable assistance of society).

However, even if it is the case that couples may someti-mes have a duty to take ethical steps to avoid the concepti-on of a child for whom they cannot care, this is not to saythat pressure may be brought to bear on couples to do thison the part of the State. The State is not entitled to put pres-

sure on people in this area, for various reasons. One reasonlies in the fact that such pressure may result in people beingdriven to take unethical steps to avoid the birth of a handi-capped child for example, sterilization, or (on the worstcase) abortion. The second reason is that the couple willnormally be those best qualified to decide if they are justi-fied in conceiving a child they know will be handicapped. Itis the couple who are likely to know best what are theirown needs and resources that is, both the strength of theirdesire to have a child, and their ability to care for that child.

It is sometimes said that no reproductive decisions sho-uld be subject to State interference. However, it seems obvi-ous that the State has a duty to protect the lives of existingchildren as it has a duty to protect the lives of other inno-cent human beings. Certainly, parents should not be coer-ced by the State either to conceive, or not to conceivea child; however, once a child exists the parents have a duty,which should be legally enforced, to look after that child atleast until someone else can take over. This is a matter of jus-tice, and therefore an appropriate subject for State interven-tion. It is perfectly reasonable for parents to be preventedboth from killing their children, even with the best of moti-ves, and from abandoning their children, with the resultthat they die.

However, the duty of the State does not, of course, stopat preventing parents from harming their children. Parentshave a right to assistance from the State in performing animportant social task: caring for vulnerable human beings.Parents should not be left alone with the responsibility ofcaring for handicapped children, but should be helped totake up the responsibilities of parenthood. If parents couldbe given sufficient help and encouragement on the part ofthe State and society in general, many would never considerrejecting their children, before or after they are born.

Address for correspondence: Dr. Helene Watt, The LinacreCentre for Health Care Ethics, 60 Grove End Rd., LondonNW8 9NH, England

DDDDYYYYIIIINNNNGGGG PPPPEEEERRRRSSSSOOOONNNN IIIINNNN TTTTHHHHEEEE FFFFAAAAMMMMIIIILLLLYYYY:::: PPPPRRRROOOOBBBB----LLLLEEEEMMMMSSSS AAAANNNNDDDD CCCCOOOONNNNDDDDIIIITTTTIIIIOOOONNNNSSSS FFFFOOOORRRR AAAA RRRREEEEAAAALLLLAAAACCCCCCCCOOOOMMMMPPPPAAAANNNNYYYYIIIINNNNGGGG

Renzo Pegoraro

Fondazione Lanza, Padova (Italy)

1111....SSSSoooocccciiiiooooccccuuuullllttttuuuurrrraaaallll rrrreeeeaaaalllliiiittttyyyy ooooffff ddddyyyyiiiinnnngggg ttttooooddddaaaayyyy

Nowadays the fact that most people die in hospitals isusual in all European countries and, in general, in the Wes-tern world. Statistics gives us percentages of 6070% aboutthis phenomenom, while the remaining 30% is about sickpersons who die in rest homes, at home or in other places.

The process of dying is more and more a hospitalized,medicalized process which is managed by medical workers(doctors and nurses); a terminaly ill person runs the risk ofbeing dispossessed of his own death and of losing the rightto supervise the event of his death (I. Illich, p. 223).

Certainly, a hospital offers high standards of medical careand assistance, especially hygienic and technological ones.But the problem is how to grant the sick person a globalassistance, which would be able to take care of him evenwhen he is at deaths door. The problem is that of goinga real, human escorting way in the terminal phases of a per-sons life by considering death not simply as the end of anillness or a trauma, but as the final event of a life; as the per-sons leave to his existence, to his family,... It is a questionof seeing how that all is lived in a family context, how a fa-

9ME&B 2 (2) 1995

mily reacts when one of its members is on the point of dy-ing, and how it can assist him, either in hospital or, andespecially, at home.

2222.... TTTThhhheeee ddddyyyyiiiinnnngggg ppppeeeerrrrssssoooonnnn aaaannnndddd hhhhiiiissss ffffaaaammmmiiiillllyyyy

A patient in a terminal phase is a sick person who is go-ing to his death in an irreversible way. The person is affec-ted by a disease which requires no more neither complexdiagnostic investigations nor advanced therapeutic treat-ments, and the course of the illness shows moments of stasisor slight remission followed by swift worsenings, with a gra-dual decay. The patient mainly needs a treatment aiming tocontrol the symptoms and the psychophysical alterationsrather than one being directed to his or her basic pathology.Various psychological reactions, alternate feelings, anxiety,reflections, are associated with and sometimes come beforethe gradual physical decay.

Death is not simply a biological event, but it is a realitywhich concerns the whole person who finds himself/her-self at the end of his/her worldly existence and who has toface the experience of sorrow, leave, loneliness, and theunknown. All the subjects variously linked to the terminallyill patient (the family, doctors and nurses, friends, etc.) areinvolved in all that, and share his going to death.

Certainly, the family plays a fundamental role by livingwith a person near to death and standing by him during the-se phases, both in the hospital and, also more specifically, ifthe dying person is at home. At this point it is worth menti-oning the psychological reactions of a person who is facinghis/her death.

2222....1111 PPPPssssyyyycccchhhhoooollllooooggggiiiiccccaaaallll pppphhhhaaaasssseeeessss ooooffff ddddyyyyiiiinnnngggg ((((EEEE.... KKKKbbbblllleeeerrrrRRRRoooossssssss))))I suppose that everybody knows the work by Elisabeth

KblerRoss, On Death and Dying (McMillan, New York,1969). The researcher distinguishes there five psychologicalphases which a patient goes through during his mortal dise-ase. I will just briefly remind them:

1) denial: a feeling of refusal and denial: it is not possible!;2) anger: be enraged against everybody and everything;3) bargaining: a compromise is looked for; the sick per-

son makes some promises, especially to God;4) depression: that feeling of grave loss that approaches

along with death;5) acceptance: a certain rest before the ultimate journey.KblerRosss observations have been criticized and con-

futed by some scholars (A. Kastenbaum, R. GlaserStrauss),who affirm that KblerRoss falls into simplifications andschemes which do not take into consideration different va-riables such as the kind and intensity of pain, the quality andquantity of support given by the family, age, sex, culture andplace (home, hospital, hospice,...), etc. (Kalish).

In practice, it has also been pointed out that Kbler Rosss study presupposed that the sick person would be infor-med about his real condition, as it usually happens in the USA.In Latin countries, on the contrary, this piece of informationis not commonly given to the dying person, so the psychologi-cal process would be articulated as follows (Cf. P. Sporken,Ayudando a morir, Sal Terrae, Santander, 1988):

1) unawareness: the sick person does not know anythingof his real physical condition, this causes a state of incom-municability with his family, who on the contrary, knowsthe unfavourable prognosis;

2) uncertainty: the sick person begins to be uncertainand asks for explanations the people around him who re-assure him;

3) implicit denial: the sick person perceives the real situ-ation, but implicitly denies it and rejects the idea;

4) communication of the truth: the moment to tell himthe truth arrives. These phases would be followed by thosedescribed by KblerRoss.

From all these considerations, without falling into strict

and oversimplified schematizations, emerges an importanceof recognizing and, in some way, sharing the experience li-ved through by the dying patient. It is in this way only thatone can really accompany him/her towards the crucial mo-ment of his/her life. Furthermore, I would like to remindhere, that it is not only a matter of giving him/her a psycho-logical support, which would imply the risk of a psychiatri-zation of the event of dying and of the creation of new spe-cialists to whom delegate the accompanying. The problemis, on the contrary, to be able to offer a real global assistancewhich could fulfill the hygienic, medical, psychological andspiritual needs of the dying person.

2222....2222 TTTThhhheeee ffffaaaammmmiiiillllyyyyThe family is intensely and immediately involved in one

of its memberss proces of dying. The problems, the psycho-logical reactions, the attempts of answers that the family hasto face in this new situation are of different kinds; and diffe-rent are also the variables which depend on: who the dyingperson is (a consort, a son,...), what age he is, the kind of di-sease and its course, the composition of the family, the hos-pitalization, etc. It is also necessary to consider the qualityof relationships among the members of the family, the capa-city for dialogue, the knowledge of symbols and rites on lifeand death, the experience of faith and the spiritual one.

In the case of a patient who is near to death the followingpsychological dynamics can be noticed in the members ofhis family:

the grievous avareness of the approaching death oftheir relative;

the feeling of guilt which comes from their power-lessness before the uncontrollable evolution of the disease;

the possible concerns over the future of the family life,including the economic aspect;

the relations to carry on with relatives, friends, neigh-bours, etc.;

the psychophysical stress which a weary assistance ofseveral months may cause (M. Petrini, 1990, p. 62).

The family is asked to face death directly, as the familyknows well that it is the death of one of its members and thatthis process will last a certain period of time (while it is notthe case of a sudden death or an accident). Many questionsmight arise: How should we react and be a family, a commu-nity of life and love, in this situation? What kind of assistan-ce should be guaranteed? Which further help is necessaryand how should it be integrated? (Particular problems arisefor a sick person with a cancer; another different situation isthat of a person who is affected e.g. by AIDS, taking into con-sideration the ways of infections spread, the course of theillness, and all the necessary precautions...).

3333.... CCCCoooonnnnddddiiiittttiiiioooonnnnssss aaaannnndddd pppprrrroooossssppppeeeeccccttttssss ffffoooorrrr aaaa rrrreeeeaaaallll aaaaccccccccoooommmmppppaaaannnnyyyyiiiinnnngggg ooooffff tttthhhheeee ddddyyyyiiiinnnngggg ppppeeeerrrrssssoooonnnn iiiinnnn tttthhhheeee ffffaaaammmmiiiillllyyyy

Even though the dying person is in a hospital, the familyis asked to fullfil a very important role of assistance and psy-chological and affectional support which should be moreand more enhanced. But we would like to linger, in particu-lar, on the experience of the home care outlining someindications and pointing out the most urgent ethical efforts.

3333....1111 CCCCuuuurrrrrrrreeeennnntttt pppprrrroooobbbblllleeeemmmmssss (Cf. G. Di Mola)There are a lot of difficulties faced when the family wants

to render an efficient home care to the seriously ill personand to accompany him/her throughout the dying process.

In our society, and consequently in families, there isa strong propensity to delegate care and assistance to insti-tutins, doctors, and to the power of modern medicine, reno-uncing the human, homely element of assistance.

A cultural climate which induces the refusal of so-rrow, death and the event of dying. Dying at home someti-mes seems strange, almost shameful, something to keep rat-her hidden.

10 ME&B 2 (2) 1995

Psychological difficulties in speaking of death withinthe family, in bearing the separation, in conversing on thefundamental themes of human existence.

Family groups are more and more restricted (34 pe-ople), and for this reason they are often unable to fulfill theneeds of a sick relative. A man is usually nursed by his wife;a woman, often already a widow, by her children who arealready adults and occupied with a families of their own.

We are not any more in the condition of the large fami-lies in the rural world. The life in a big city in the hugeblocks of flats has become anonymous, characterized bya negative privacy: it is difficult to enter into such a relation-ship with neighbours which could permit to obtain a helpfrom them in the case of need. The working rate, the stressof the city life, makes it difficult to find a time, patience,organization among the members of a family in order tolook after the sick person.

In the families, where a sense of cohesion among therelatives does exist, the presence of a seriously ill personmay give rise to the situation of crisis, but it may also turnout positively by strengthening the relationships among the-ir members. The family gathers around the weakest and themost suffering relative, and recovers deep links while sho-wing, almost symbolically, to be capable of sympathy, sha-ring and mutual comfort.

But the situations might appear, in that the sick personcauses such psychological and organizational difficulties, thatinconvenience and unbalance the group (family) he belongsto. In this case the tensions and the isolation from the outsideworld may increase. The sick himself may feel ill at ease forthe problems he causes the family. The wish to die atones home is very strong, but one also feels that this fact maycause a greater distress to the family, some difficulties for thecommitment of assistance, and inconveniences in relations.

3333....2222 PPPPrrrroooossssppppeeeeccccttttssss aaaannnndddd eeeetttthhhhiiiiccccaaaallll iiiissssssssuuuueeeessssThe family must think over itself in another way when

one of its members is dying; it also must draw from its ownenergies and try to be a community that helps a person todie with dignity and surrounded by warmth. The connecti-on with the hospital, the hospice or other organizations maybe variously interrelated, and it seems that, nowadays, anaccompanying the dying person at home is easier in thevery final phases (for example during the month) as it isa more bearable situation for the family and it allows the illto spend the last moments of his life with the people andthings he loves the most.

A) We can suggest the following prospects in order to: Make possible a real and efficient home care service,

which could enable the family to exercise its function asa vital environment, rich in values and sympathy and whichfits well to the person who is passing away.

To this purpose, elaborate a close and harmonious co-operation among the family doctor, nurses, social workers,clergy, volunteers, etc.

Support the family and equip it with greater responsibi-lity, also concerning the hygienicmedical treatments andthe psychological approach.

Promote the dialogue within the family, encourage themembers to share the problems, and to get over the mecha-nisms of selfdefence.

B) The familys ethical attitudes may be expressed in: Offering the terminally ill patient the possibility of dis-

closing all his feelings, being able to listen and share them ina real empathic relationship, also encouraging the verbaland nonverbal communication.

Comparing oneself with ones own death evoked bythe presence of the dying person.

Sharing fears and selfdefences among relatives, or alsowith the help of somebody else, trying to formulate and over-

come them. In this way it will be possible to establish a morereal and deeper communication with the dying person.

Allowing the sick person to come to his truth avoidingthe conspiracy of silence and the solitude into which thesick person runs the risk of falling.

P. Verspieren states, that encouraging the dying personto open himself/herself may make anguish less burdensome,and that human presence allows many sick people toimprove and reach a real acceptance of their condition, andsometimes even a true serenity. Some people become re-conciled with their relatives after years of discord and sepa-ration; others take their leave of their family in sorrow or intears, but not without a certain joy to be surrounded by the-ir dear ones and to be able to communicate, probably forthe first time, in a deep way with them. Somebody else over-comes the feeling of guilt and failure and discovers that hispast life had a meaning he had not understood up to thatmoment; others make a real spiritual progress... The familyas well, if it succeeds in accompanying the dying relativeuntil his/her end, lives through a period of deep intensityand, afterwards, it will be able to elaborate its mourningwith less feeling of guilt (pp. 173174).

Thus, the family will prove to be an authentic communityof life and love, which is able to make a better disclosure ofthe meaning of the life that does not die.

BBBBiiiibbbblllliiiiooooggggrrrraaaapppphhhhyyyy

AA. VV.: Caring for the dying patient and the family.Harper and Row Publ., London 1983.

AA. VV.: Famiglia e salute. Vita e Pensiero, Milano 1987. BRUBAKER, T.H. (ed.): Aging, health and family, Sage,

London 1987. COPPERMAN, H.: Dying at home, John Wiley and Sons

Ltd, New York 1983. CORLI, O.: Una medicina per chi muore, Citta Nuova,

Roma 1988. DI MOLA, G.: La medicina palliativa, ovvero: prendersi

cura della vita guando non si puo guarire, in: AA. VV.: Nasce-re, amare, morire. Paoline, Milano 1989, p. 83103.

GARFIELD, C. (ed.): Psychosocial care of the dying pa-tient, McGrawHill, New York 1978.

ILLICH, I.: Nemesi medica, Mondadori, Milano, 1987(originale inglese London, 1976).

KASTENBAUM, A., AISENBERG, R.: The psychology ofdeath, Springer, New York 1986.

KLIGMAN, E. W.: Con la famiglia al fianco. In: Medico eanziano 6(1991), p. 3436.

KBLERROSS, E.: On death and dying. Macmillan,New York 1969.

KBLERROSS, E.: Questions and ansers on death anddying. Macmillan, New York 1975.

JOMAIN, C.: Vivere lultimo istante. Paoline, Milano1986 (originale francese Mourir dans la tendresse).

LEONI, M. C.: Lassistenza psicosociale nella malattiainquaribile. Cittadella, Assisi, 1992.

PETRINI, M.: Accanto al morente, Vita e Pensiero, Mila-no 1990.

SGRECCIA, E., SPAGNOLO, A. G., DI PIETRO, M. L.(eds): Lassistenza al morente. Aspetti socioculturali, medi-coassistenziali e pastorali. (Proceedings of the internati-onal congress, Rome 15. 18. 3. 1992), Vita e Pensiero, Mila-no 1994.

VERSPIEREN, P.: Euthanasia? Dallaccanimento terape-utico. Paoline, Milano 1985 (originale francese 1984).

Address for correspondence: Dr. Renzo Pegoraro, Fondazio-ne Lanza, Via Dante 55, I35139 Padova, Italy

11ME&B 2 (2) 1995

WWWWHHHHAAAATTTT CCCCAAAANNNN PPPPAAAALLLLLLLLIIIIAAAATTTTIIIIVVVVEEEE CCCCAAAARRRREEEE OOOOFFFFFFFFEEEERRRR ????

Ilora Finlay

Holme Tower Marie Curie Centre, Penarth, South Gla-morgan (England)

PPPPAAAALLLLLLLLIIIIAAAATTTTIIIIVVVVEEEE CCCCAAAARRRREEEE has been defined as: The active totalcare of patients whose disease is not responsive to curativetreatment, where thecontrol of pain, of other symptomsand of psychological, social and spiritual problems is para-mount, with the achievement of the best possible quality oflife for patients and their families as the goal.

PPPPaaaattttiiiieeeennnnttttssss nnnneeeeeeeeddddssss wwwwiiiitttthhhh ttttiiiimmmmeeee: Many patients cannot be curedat the time of diagnosis (e.g. cancer of the lung or pancreas).Therefore treatment aims to control the cancer and the sym-ptoms, but will not greatly prolong life. This is palliative tre-atment. As disease progresses the symptoms often worsenand new symptoms emerge so the patient needs more andmore palliative care to maintain quality of life and to be ena-bled to live actively until death.

PPPPaaaalllllllliiiiaaaattttiiiivvvveeee ccccaaaarrrreeee wwwwoooorrrrkkkkssss alongside acute specialties, to care for those with progressing disease, to care for those approaching death, as a multidisciplinary team of doctors, nurses, physiot-

herapist, occupational therapist, social worker, chaplain, etc.PPPPaaaalllllllliiiiaaaattttiiiivvvveeee ccccaaaarrrreeee aaaaiiiimmmmssss ttttoooo improve the quality of life, stop patients dying of exhaustion through poor sym-

ptom control (e.g. vomiting, singultus, pain, etc.), help patients complete their life tasks (e.g. mother ma-

king arrangements for care of her children after her death), improve communication between the patient, family

and professionals, support the patients family as they face bereavement, always believe the distress and respond appropriately;

the patients do not exaggerate or invent their pain, improve communication, the majority of complaints

from patients relate to poor communication skills of the he-alth professionals,

teach other professionals to deliver better symptomcontrol and to improve the communication.

PPPPaaaalllllllliiiiaaaattttiiiivvvveeee ccccaaaarrrreeee pppprrrroooovvvviiiiddddeeeessss symptom control common symptoms include pain,

nausea and vomiting, dyspnoea, bowel problems, weakness,mouth problems,

emotional/psychological support to the patient and thefamily fear worsens the distress from unrelieved sym-ptoms,

social support, spiritual care, bereavement care.

PPPPaaaalllllllliiiiaaaattttiiiivvvveeee ccccaaaarrrreeee iiiissss ddddeeeelllliiiivvvveeeerrrreeeedddd ttttoooo tttthhhheeee iiiinnnnddddiiiivvvviiiidddduuuuaaaallllssss.... We have tounderstand, as much as possible, the people who are our pa-tients. As doctors we must remember that each patient isa unique individual. For example a young mother who knewshe was dying, had severe pain which was total pain of herwhole self. She had ddddiiiissssttttrrrreeeessssssss made up of physical pain frombone metastases and amplified by social problems whowould care for her children? Her emotional pain was thepain of knowing she would not see her children grow upand the pain of departing from them. Her spiritual pain fo-cused, as it so often does, around problems such as whathave I done to deserve this?, is this divine retribution?

TTTThhhheeee rrrreeeelllliiiieeeeffff ooooffff ssssyyyymmmmppppttttoooommmmssss.... Every doctor should be able tohelp with some of the common symptoms and problemsthat patients have. Pain occurs in 2/3 of patients with can-cer, nausea and vomiting in about 1/3 and weakness, ano-

rexia, constipation, dyspnoea, mouth problems are alsocommon. Underlying all these are the patients fears.

How do we control the symptoms? This usually doesnot require hightechnology medicine but the doc-tors best diagnostic skills to adequately analyze the sym-ptoms to determine the cause. Symptom relief is obtainedthrough aaaapppppppprrrroooopppprrrriiiiaaaatttteeee pppprrrreeeessssccccrrrriiiibbbbiiiinnnngggg of drugs and other thera-peutical measures. The doctor who guesses and prescribeswill fail the patient. For example different antiemetics arerequired for different causes; the doctor who prescribesby guesswork will miss diagnoses such as hypercalcaemiaor bowel obstruction and provide no relief of symptoms.

The process of symptom analysis for patients with painrequires a good medical history. Simple questions in theassessment of pain reveal the cause, eg: site and nature ofthe pain and what the patient thinks about their pain.

It is important to remember that distress has physical,emotional, social and spiritual components. The patientwith pain who is frightened by their pain will feel it asagony where the patient who understands that pain andhow it can be controlled will only have an ache.

It is important to help patients communicate as themore frightened a person is, the less likely he/she is totalk about his/her fears. Often patients find the answer ismuch better than they had been imagining. Many patientswith cancer fear the pain, but 90% of cancer pain is easilycontrolled; many fear a distressing death when a peacefuldeath can be provided by a good palliative care.

The World Health Organisation has provided a veryeasy guide to analgesic prescribing. AAAAnnnnaaaallllggggeeeessssiiiiccccssss fall intothree main groups, nonopioids, weak opioids and strongopioids. Morphine is a very safe and effective opioid anal-gesic when carefully titrated up to control the pa-tients pain.

It is the duty of the physician to provide the good sym-ptom control for patients to enjoy the life that is left, evenwhen with advanced disease.

Dame Cicely Saunders said that ddddiiiiggggnnnniiiittttyyyy is having a sen-se of personal worth. It is the way that we behave towardsour patients, the respect we show them and our commit-ment to care that enhances their sense of dignity. Patientsneed our help to complete lifes tasks. Careful symptomcontrol can enable patients to do a great deal of living andactively contribute to those around them, even when inthe last days of life.

Patients need more than only a physical care from theprofessionals. They need ccccoooonnnnttttiiiinnnnuuuuiiiittttyyyy ooooffff ccccaaaarrrreeee with adequateinformation about their condition and the options for tre-atment. Doctors should be prepared to refer to alternativeservices to provide help for patients and there must bea good communication between services.

Patients and their families can gain much ssssuuuuppppppppoooorrrrtttt frombeing able to talk about their problems; patient supportgroups can have an important role. No professional sho-uld be too proud to ask for help from the another; noonecan know all the answers!

TTTThhhheeee nnnneeeeeeeedddd ooooffff hhhhooooppppeeee.... But above all we need hope. Pa-tients, however ill and however close to death need somehope; this cannot be the hope of cure or of remission butit may be the hope of a good nights sleep, a peaceful de-ath, or of living long enough to enjoy a visit from a son ordaughter. Hope must be realistic we must not lie, as wewill never be believed again. We cannot provide cure butwe can provide comfort. We, as professionals, must neverabandon hope for it is the hope of providing comfort andcare that spurs us on in our daily work and in researchefforts. Good palliative care should enable patients to liveto the full rather than wait in unrelieved distress to die.

Correspondence to: Dr. Ilora Finlay, FRCGP, Consultant in Palliative Medi-cine, Honorary Senior Lecturer (UWCM), Medical Director, Holme TowerMarie Curie Centre,PENARTH, South Glamorgan CF64 3YR, England

12 ME&B 2 (2) 1995

WWWWHHHHYYYY HHHHOOOOSSSSPPPPIIIICCCCEEEESSSS OOOOPPPPPPPPOOOOSSSSEEEE EEEEUUUUTTTTHHHHAAAANNNNAAAASSSSIIIIAAAA

Ilora Finlay

Holme Tower Marie Curie Centre, Penarth, South Gla-morgan (England)

This paper is given from the perspective of a clinician fa-ced with applying the ethical principles in everyday practi-ce. There are some simple (prima facie) ethical principlesthat can be applied to each decision and can help guide thedecisionmaking process. These are the principles of auto-nomy, beneficence (to do good), nonmaleficence (to dono harm) and principle of justice. I will comment on each ofth