8/6/2019 Ann Oncol 1996 Stiefel 135 8

1/4

Annals of Oncology 7: 135-138, 1996.O 1996 Kluwer Academic Publishers. Printed in the Netherlands.

ArenaPalliative and supportive care: At the frontier of medical omnipotence*F. Stiefel & P. GuexDivision Autonome de Medecine Psycho-Sociale, Centre Hospitaller Universitaire Vaudois, Lausanne, Switzerland

SummaryCancer patients have physical, social, spiritual and emotionalneed s. They may suffer from severe physical symptom s, fromsocial isolation and a sense of spiritual abandonment, andemotions such as sadness and anxiety, or feelings of decep-tion, helplessness, anger and guilt. In some of them, the dis-ease is rapidly progressive and they ultimately die. Theirdemanding care evokes intense feelings in health care pro-viders, the more so since these incurable patients represent achallenge, which can be characterized as one of 'medical

omnipotence'. It may be assumed that the way health careproviders cope with these circumstances profoundly influ-ences the way these patients are cared for. Attitudes regard-ing the emerging heterogeneous movement of palliative andsupportive care and its different models of implementationcan be viewed from this vantage point. Here we look at theseinterrelations and discuss the potential pitfalls if they areignored and remain unexamined.Key w ords: cancer, palliative care, psycho-oncology, su ppo r-tive care

The following thoughts about palliative and supportivecare derive from clinical experiences in oncology,psycho-oncology, psychiatry and palliative care. Thisview is certainly a subjective one, influenced by theautho rs' specialization as psychiatrists. It does not pur-port to be a comprehensive, in-depth investigation ofthe topic, but is submitted for reflection and discussion.Cancer patients may suffer from physical symptoms,feelings of spiritual abandonment and social isolation,and intense emotions. Health care providers treatingthese patients face a difficult biopsychosocial situation,and at the same time must co pe w ith their own feelingsevoked by these circumstances. And they also have todeal with the challenge which incurable cancer patientspresent to their medical identity, usually defined by thesuccess they achieve in fighting for Me. From our ex-perience, we argue that these circumstances have aprofound impact on the way the care of cancer patientsis conceptualized.

A short overview of the development of palliative andsupportive careWhile treatments with curative intent dominated theearly history of oncology [1-3], a movement promotingthe importance of non-curative, so-called palliative orsupportive treatments, has evolved from the pioneerwork of Dr. Cicely Saunders, who founded St. Chris-topher's Hospice in London in 1967 [4]. Palliative care

is defined by the World Health Organization as anactive total care of patients whose disease is not re-sponsive to curative treatment [5]. Supportive care, amo re recent term indicating a different conceptualiza-tion, is concerned with the optimal well-being of cancerpatients in all stages of their often long and compli-cated disease. Supportive care covers all aspects of su p-port in oncology, during curative treatment phases andin advanced and terminal stages of disease. Its non-tumor-directed therapeutic strategies include suppor-tive interventions such as pain control, psychosocialand spiritual aid, antiemesis, adequate control of infec-tions or nutritional support. Palliative care addressesthe patients without hope of cure and is therefore onlyone aspect of the broad umbrella of supportive care [6].While in some countries physicians and nurses workingin oncology and geriatrics were among the first to sup-port this movement, in other places such as Britain,palliative care was mainly developed separately fromhospital-based m edicine. Palliative and suppo rtive careis now conceptualized and implemented in differentforms and is no longer restricted to cancer patients.Depending on local circumstances, palliative and sup-portive care services are established as home care ser-vices [7], hospital-based consultation services [8], ashospital-based inpatient units [9] or as independenthospices [10]. Some of these services are also accessibleto patients with AIDS, end-stage renal disease andother medical con ditions [11]. The variety of term sused to characterize this evolving discipline makes it

A modified version of an invited presentation held at the Second International Congress of Psycho-Oncology, Octobe r 20 , 199 5, Ko be,Japan.

byguestonJuly9,2011

annonc.oxfordjournals.org

Downloadedfrom

http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/

8/6/2019 Ann Oncol 1996 Stiefel 135 8

2/4

136difficult to compare the actual situation of palliativeand supportive care services in different countries.However, there are considerable differences in suchservices with respect to form and number. In theUnited Kingdom, for example, where the terms 'pallia-tive care', 'continuing care', 'hospice', and 'terminal c are'are often used interchangeably, over 130 hospices werecounted in 1992 [8, 10]. In the United States, 'hospice'now refers to the discreet form of certified terminalcare provided at home or within institutions that isstrictly defined, administered, and reimbursed accord-ing to a uniform set of procedures set by the govern-me nt [12]. In Ca nada , where there are o nly two free-standing hospice inpatient units, 'hospice' most com-monly refers to a community-based volunteer programfor the terminally ill [8]. Some of the hospital-basedpalliative and supportive care services were first estab-lished as consultation services (e.g., at St. Luke's Hos-pital, New York, in 1974) and later expanded to incor-po rate an inpatient unit [8]. Oth ers began by establish-ing an inpatient unit [9]. Th ere a re hospital-based pal-liative and supportive care services with an affiliatedhom e care program [9,13] and hom e care services thatope rate independently [14].While circumstances such as the cultural context,local conditions and financial resources are responsiblefor these different de velopm ents, there are also psycho-logical reasons. This article focuses primarily on thepsychological reasons that we believe play an imp ortantrole in the conceptualization and implementation ofpalliative and supportive care services within oncology.To illustrate our view, three different attitudes towardpalliative and su pportive ca re will be discussed.They do not encompass the entire range of opinionabou t th ese services, but may serve to illustrate some ofthe psychological motives that have shaped this emerg-ing speciality.

Attitudes towards palliative and supportive careFrom our experience, three predominant attitudestoward palliative and supportive care can be identifiedand summarized by the following statements:1. 'We don 't need palliative or supp ortive care.Oncology always had to face incurable and suffer-ing patients, and they were always treated expert-

ly1-2. 'Dying cancer patients have needs different fromthose of curable pa tients. We have to protect themfrom acute invasive medical care. Palliative careshould therefore be delivered in independent set-tings separated from the hospital'.3. 'All cancer patients can benefit from the aims ofpalliative care. In orde r to achieve these aims, pal-liative care should utilize all of the possibilitiesmodern medicine can offer, as long as the poten-tial benefits outweigh potential harm. To facilitatethis exchange with other medical disciplines, pal-

liative care should be integrated in the general hos-pital. Since this approach is not reserved to theterminally ill, it should be called sup portive care'.

Different motives for different attitudesIn the following we will reflect upon some of the rea-sons for these different attitudes and some of their con-sequences. The first attitude denies the success thatcenters with palliative or supportive care programmeshave achieved in ameliorating their cancer patients'quality of life [15, 16]. It denies the fact that palliativeand supportive care services have gained considerablerecognition in recent years and are an expanding andevolving part of the medical services in most of thedeveloped countries [8, 10,11, 17]. Denial is the resultof a threat. The threat may derive from the patient andthe (often unconscious) perception of being insufficientas a medical doctor if one is not capable of facing ah1possible challenges, including the one p resented by suf-fering o r incurab le canc er patien ts. By denying the po s-sibilities palliative and supportive care has to offer, onedenies ones own incompetence concerning these pa-tients. On a more conscious level, such an attitude canalso express legitimate wo rries abou t overspecializationof medicine with all of its negative impact on patientcare. In addition, especially in a time of financialrestriction, politically inspired motives may also play arole, since every emerging speciality in medicine isoften considered a potential threat to the power ofalready existing specialities.The second attitude acknowledges the complexneeds of the cancer patients and the problem they re-present for traditional curative oncology. Consequently,these health care providers wish to protect the patientfrom 'bad m odern medicine'. They deal with this threat-ening situation not by denying it, but by projecting (andso diminishing and locating) the threat on m edicine. Ona more conscious level, such an attitude can also ex-press legitimate worries about a medicine that hasbecome too distant from its patients. Since some of th efirst models of palliative care were close to this posi-tion, it may have been necessary, as for other revolu-tionary movements for palliative care to first besepared from medicine in order to be re-integrated assupportive care.

The third attitude also acknowledges the achieve-ments of palliative and suppo rtive care. Different fromthe second attitude, this position attempts to integratethe idea of interdisciplinarity and to utilize the benefi-cial possibilities of modern medicine, in order toachieve comprehensive care for all cancer patients.While palliation of symptoms, either by active preven-tion or therape utic interve ntion, remains a primary g oalin this approac h, it is not reserved to the terminally ill.Although this seems to be the least defensive positionand the most realistic attitude, negative consequencesare sometimes ob served as well (see below).

byguestonJuly9,2011

annonc.oxfordjournals.org

Downloadedfrom

http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/

8/6/2019 Ann Oncol 1996 Stiefel 135 8

3/4

137Different consequences of different attitudesAll three of these positions require reflection abouttheir possible consequences. Supporters on the firstattitude, are probably by now a minority within oncol-ogy. In a recent survey [11] of the attitudes of the mem-bers of the physician faculty of an academic hospital inthe United States where a hospice program has been inexistence for more than 10 years, 96% of the respond-ents thought that the hospice program was a valuableresource for the medical center. Similar positive atti-tudes tow ards palliative and supportive care were dem-onstra ted amon g future physicians [18]. In Britain,where an expanding number of hospices are located,only 10% of a sample of general practitioners felt noneed for a hospice before one was opened in their area[10]; the number even decreased to 2% some monthsafter its opening. While there have been no surveysassessing attitudes towards other kinds of palliative orsupportive care services, these three surveys indicatethat attitudes among physicians with direct clinicalexperience with such services are positive. Physicianswho are still opposed to these ideas will now miss theopportunity to integrate palliative and supportive careinto their services. They will soon have to face severecriticism from colleagues and the public, since dissatis-faction with hospital services and satisfaction with pal-liative and supportive care services among referringphysicians, patients with advanced disease and theirrelatives have already been docum ented [11, 19]. In atime of increased regard for the patient's point of viewand patients' rights [20], and a time of increased aware-ness within medicine of the limits of biomedical results,and a comm itment to the broader perspective of qualityof life [1-3], this position will probably not survive. Inthe meantime, it empowers those who accuse medicineof not taking cae of their patients.Supporters of the second attitude are those who feeluncomfortable about the increasing technologicalaspects of modern medicine and who alienate them-selves by creating alternative forms of health care. Oneconsequence is that their patients do not benefit fromthe tools for symptom control that medicine has tooffer. It is generally accepted that effective symptomcontrol is best offered when palliative and supportivecare is delivered within a hospital or at least within amedical setting [8,11, 21]. Another consequence couldbe that their alienation would lead them to indoctrina-tion by extreme groups who oppose the present medi-cal system. In some countries, such as Switzerland,proponents of physician-assisted suicide have tried toopen independent 'health care' structures to pursuetheir goals. An increased empowerment of these move-ments by traditional health care providers would haveconsiderable and dangerous consequences for the careand the rights of the weak and incapacitated membersof our societies [22].Supporters of the third attitude are situated in themainstream of supportive care. At first glance, there

may seem to be no harmful consequences to fear fromsuch a reasonable point of view. However, in palliativecare settings that try to integrate the investigation andmethods of modern medical treatment, there is a temp-tation to utilize these tools for goals other than medicalones. They can be used for action when reflection isrequired or they can be used to test the performance ofpalliative care as a future subspeciality. A failure tounderstand the differences between symptoms and suf-fering increases the likelihood of such misuse. Whilesymptoms can be controlled by medical interventions,suffering is part of the human condition, and can not becontrolled by medication, radiation or surgery. If thewish for medical omnipotence demands the illusion ofcontrol of suffering, suffering is reduced to a patho-physiological process and medical interventions willreplace and prevent empathy, compassion and care[23]. Such risks are especially represented in cultureswhere paradigms like activism (Sve can and shouldshape the future') and positivism ('this future will cer-tainly be better than the present") are dominant [24].There, the famous 'war on cancer1, already implying anextremly aggressive conflictual situation, can easilyexpand to 'a war on incurable cancer5, which would cer-tainly also leave victims behin d.

ConclusionsWhile there are always rational arguments for one orthe other point of view, it should not be overlooked,that there may also be unconscious or o therwise hidde nfactors influencing the discussion of palliative and sup-portive care. In the face of the spreading movement forpalliative and supportive care, it is in the interest ofhealth care providers within oncology to reflect uponand discuss the different attitudes towards its imple-mentation, and the interrelations between these atti-tudes, the cancer patients and themselves. We agreewith those who maintain that the goals of palliative andsupportive care are best served when such services areintegrated in teaching hospitals and into other medicalsettings [8, 11, 18]. The integration of such servicesseems to be most effective where psychological barriersto the implementation of palliative or supportive careare kept to a minimum. This can be achieved when acredible and effective team within the hospital takes theleadership for implementation or if the dialogue aboutsuch services takes into account the psychologicalmotives for the different attitudes. From our experi-ence, the former approach is usually more promising.

References1. Holland JC . Historical overview. In Holland JC, Rowland JH(eds): Handbook of Psycho-Oncology. New York, Oxford:Oxford University Press 1989; 3-12.2. Razavi D, Stiefel F. Psychiatric and emotional problems of can-cer patients. In Klastersky J, Schimpff SC, Senn HJ (eds):

byguestonJuly9,2011

annonc.oxfordjournals.org

Downloadedfrom

http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/

8/6/2019 Ann Oncol 1996 Stiefel 135 8

4/4

13 8Handbook of Supportive Care in Cancer. New York, Basel,Hong Kong: Marcel Dekker, Inc. 1995; 221 -4 3.3. Guex P. The concept of 'quality of life'. In Guex P (ed): AnIntroduction to Psycho-Oncology. London: Routledge 1994;26-39.4 . Saunders C. Preface. In Saunders C (ed): The Management ofTerminal Malignant Disease. London: Edward Arnold 1984.

5. Technical Report Series 804. Cancer pain relief and palliativecare. Geneva: World Health Organization 1990; 11.6. Senn HJ. How 'supportive' is yet anoth er international oncol-ogy journal? Support Care Cancer 1993; 1:1.7. Ventafridda V, Ripamonti C, De Conno F, Tamburini M.Symptom prevalence and control during cancer patients' lastdays of life. J Palliat Care 1990; 6 (3): 7-1 1 .8. O'Neill WM, O'Conno r P, Latim er EJ. Hospital palliative careservices: Three models in three counties. J Pain SymptomManage 1992; 7:4 06-1 3.9. De Stoutz ND, Glaus A. Supportive and palliative care of can-cer patients at the Kantonsspital St. Gallen, Switzerland. Sup-port Care Cancer 1995; 3: 2 2 1 -6 .10 . Macdonald ET, Macdonald JB. How do local doctors react toa hospice? Health Bulletin 1992; 50(5) (September): 351- 5.11. Von Gunten CF, Von Roenn JH, Neely KJ et al. Hospice andpalliative care: Attitudes and practices of the physician facultyof an academic hospital. Am J Hospice Palliative Care 1995;(July/August): 38 -4 2.12. Bulkin W, Lukashok MS. Rx for dying: The case for hospice. NEngl J Med 1988; 318: 3 76 -8 .13. Fainsinger RL. Palliative care in Edmonton. Support CareCancer 1995; 3: 9 1 -2 .14 . Lang Meier M, Neuenschwander H. Hospice - a homecare ser-vice for terminally ill cancer patients in southern Switzerland.Support Care Cancer 1995; 3: 3 8 9 -9 2 .

15. Parkes CM. Terminal care: Home, hospital or hospice? Lancet1985; 1:155-7.16. Fainsinger R, Miller M, Bruera E. Symptom control during thelast week of life on a palliative care unit, J Palliat Care 1991;7(1): 5-11.17. Schipper H. The evolution of palliative care: A perspectivefrom the Eu ropean Community. J Palliat Care 1991; 7(4): 3 7 -41.18. Knight CF, Knight PF, Gellula MH, Holman Gh. Training ourfuture physicians: A hospice rotation for m edical students. AmJ Hospice Palliat C are 1992; (January/February): 23- 8.19. Higginson I, Wade A, McCarthy M. Palliative care: Views ofpatients and their families. BMJ 1990 ; 301: 2 77-8 9 .20 . Stiefel F, Senn HJ. Cancer diagnosis disclosure in a Spanishhospital: How do they discuss treatment options? (Editorial).Ann Oncol 1992; 3:422.21 . Stiefel F, Bruera E . On symptom control when death is near. JPalliat C are 1991; 7(1): 39-41.22 . Ernst C. Against medical killing. Support Care C ancer 1995; 3:3-4 .23 . Gregory D. The myth of control: Suffering in palliative care. JPalliat Care 1994; 10(2): 18-22.24 . Cassidy CM. Social science theory and m ethods in the study ofalternative and complementary medicine. J Altern Compl Med1995; 1(1): 19-40.Received 16 Octo ber 1995; accepted 20 December 1995.Correspondence to:F. Stiefel, M.D .Division Autonom e de M edecine Psycho-SocialeCentre Hospitalier Universitaire Vaudois1011 Lausanne, Switzerland

byguestonJuly9,2011

annonc.oxfordjournals.org

Downloadedfrom

http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/http://annonc.oxfordjournals.org/