JOURNAL OF PALLIATIVE MEDICINEVolume 10, Number 3, 2007© Mary Ann Liebert, Inc.DOI: 10.1089/jpm.2006.0200

Illness Awareness of Patients in Hospice: Psychological Evaluation and Perception of Family Members and Medical Staff

JESSICA ANDRUCCIOLI,1 ALESSANDRA MONTESI,2 WILLIAM RAFFAELI, M.D.,1

MARIA C. MONTERUBBIANESI, M.D.,1 PAOLA TURCI, M.D.,2 CRISTINA PITTURERI, M.D.,2

DONATELLA SARTI, Ph.D.,1 ALBERTO P. VIGNALI,1 and ANDREA P. ROSSI, M.D.2

ABSTRACT

Background: Despite the widespread belief that patients should be given full information about theirdisease and prognosis, they actually they know very little. The purpose of this study was to evalu-ate the awareness of 100 patients (from the Hospices of Rimini and Savignano-Rubicone) about theirdiagnoses and prognoses. It is also investigated staff and relatives perceptions of patients’ aware-ness.

Methods: A semistructured interview of patients was performed by psychologists to evaluate theirawareness about diagnosis and prognosis. Then psychologists completed a questionnaire about theirown evaluation of patients’ disease awareness. Moreover, the same questionnaire was completed byfamily members and by staff members (doctors and nurses) about their perceptions of patients’awareness. Doctors and nurses gave their answers based on their routine interactions with patients.

Results: Despite the fact that patients in hospice were in the terminal phase of disease, 30% ofpatients had no diagnosis awareness, and an even higher percentage of patients (62%) who had noprognosis awareness.

741

INTRODUCTION

UNTIL THE 1960s most doctors did not reveal thetruth to patients when the diagnosis was malig-

nant cancer. Indeed they informed only patients’ fam-ily members about the diagnosis and the prognosis ofthe disease. In particular, this behavior was very wide-spread in Italy and abroad.1 During the following 30years there was a deep change in doctors’ behavior to-ward patient information. This change occurred mainlyin the United States, where, at the end of the 1970s,more than 90% of the doctors preferred to tell the truthto patients with cancer about their disease.2

The communication between doctors and patientswas of pivotal importance. Patients who were ade-

quately informed about their health conditions showedbetter adaptation to the disease than those not in-formed.3 Full information helped patients accept theirdisease and activate the mobilization of the resourcesthat were needed to deal with illness-related matters.Indeed, the trust among doctors and patients could bemaintained by free communication. In this way thera-peutic decisions could be discussed with patients andcould be made with their full consent and awareness.This also allowed patients the opportunity to clarifytheir doubts and fears, reducing their uncertainty andallowing practical and emotional adaptations to thedisease.

Despite this positive disposition to inform patientsabout their disease in central and northern Europe

1Infermi Hospital, Rimini, Italy.2Hospice Savignano-Rubicone, Savignano, Italy.

ANDRUCCIOLI ET AL.742

countries, there is still a considerable reluctance to doso in Mediterranean countries including Italy.4

Even though the juridical provision and the newmedical Ethical Code of 1998 clearly state that pro-viding fair and adequate information to patients is aduty of the medical staff, Italian doctors still find itdifficult to fulfill this task.5 The advanced age of pa-tients is a further negative element for this issue, in-deed, it has been proven that the elderly are often notaware of their illness.6–9

The purpose of this study, conducted in two hos-pices (Rimini and Savignano-Rubicone), was to in-vestigate the awareness of 100 patients (average age,66.25 years) about their diagnosis and prognosis. Itwas also analyzed the perceptions of family members(listed as the main contact among the relatives of eachpatient) and hospital staff relatively to patients’ aware-ness.

METHODS

The sample

This study examined 100 patients admitted to twohospices recruited as follows: 54 patients in RiminiHospice and 46 patients in Savignano-Rubicone Hos-pice (Fig. 1). The description of the sample composi-tion is reported in Table 1.

The staff members of the two hospices (Rimini andSavignano-Rubicone), who participated in this studyincluded: 3 psychologists, 4 doctors, and 7 nurses.

In order to participate in this study, patients signedan informed consent, had been admitted to one of thetwo hospice in the study (Rimini and Savignano-Ru-bicone), had been in an advanced stage of neoplasticpathology (palliative prognostic score � 3 months),and had a controlled pain.

Patients with a life expectancy of less than a week,who could not be interviewed because of their sleepi-ness, who could not be interviewed because of theirpsychical disorientation, or who did not have any fam-ily members, were excluded from the study.

Phases of the study

The study was structured in five distinct phases. Inthe first phase, psychologists constructed a semistruc-tured interview (Table 2) evaluate patients’ awarenessabout their disease and a questionnaire (Table 3) in or-der to survey evaluations and perceptions of staff andfamily members. In the second phase, the semistruc-tured interview/talk to the patients was performed bypsychologists to evaluate patients’ awareness about di-agnosis and prognosis. In the third phase, psycholo-gists responded to the questionnaire reporting theirevaluations based on the answers given by patientsduring the interview/talk, about patients’ awareness.In the fourth phase, the same questionnaire was filledby family members and staff members (doctors andnurses). Family and staff members answered the ques-tionnaire expressing their perceptions, based on theirdaily interactions with the patients, on patients’ aware-ness. In the last stage, the measure of concordance (�of Cohen) was computed between the evaluations ofpsychologists and the perceptions of the other personswho took care of the patients.

Interviews and questionnaires were performed aweek after the date of admission to hospice, to allowan adequate adaptation to the new environment.

Interview/talk

Semistructured clinical interviews were the mostused methods for the investigation of disease aware-ness.6,8,10–17 Because of the lack of a standardizedquestionnaire for the survey of patients’ disease aware-ness, open-ended questions (about type of disease, rea-

Hospice of Rimini46 54

Hospice ofSavignano-Rubicone

TABLE 1. CHARACTERISTICS OF THE SAMPLE

Sample(n � 100)

AgeMean � SD 66.25 � 13.063Range 22–95

GenderMale 55%Female 45%

Primary tumorIntestinal tract 35%Respiratory apparatus 27%Urogenital apparatus 12%Breast cancer 11%Brain cancer 5%Leukemia 4%Cancer in a nonspecified apparatus 4%Bone cancer 2%

SD, standard deviation.

FIG. 1. Distribution of the patients in the Hospices of Rim-ini and Savignano-Rubicone.

T1 �

ILLNESS AWARENESS 743

sons of the hospitalization, types of current and pre-vious treatments, plans and expectations from the hos-pitalization) were posed to patients during interviews,allowing subjective interpretations of the answers ob-tained by psychologists.

The psychologists of Rimini and Savignano-Rubi-cone hospices included this semistructured interviewin their routine psychological talks with patients in or-der to evaluate the disease awareness of patients indi-rectly.

Questionnaire

Psychologists answered the questionnaire aboutpatients’ awareness according to the answers re-ceived during the interview/talk. Subsequently thesame questionnaire completed by family members,doctors, and nurses to express their perceptions(based on their routine interactions with patients)about patients’ awareness. The questionnaire in-cluded two distinct sections: one for the diagnosisawareness and one for the prognosis awareness. Thefirst few questions (in each section) helped personscompleting the questionnaire to reflect on their per-ceptions about the illness awareness of the patients.Subjects were also invited to reflect about terms usedby patients to describe their illness and about theirplans and expectancies, and to verify if patients’ in-formation were adequate.

After answering these questions, family and staffmembers gave their evaluations about patients’ aware-ness in the last question of the questionnaire (in eachsection), indicating if in their opinion patients wereaware or unaware.

Awareness evaluation

Patients were evaluated as aware of their diagnosisif during the semistructured interview they reportedthat their disease was neoplastic. It was not importantif they did not report the exact clinical diagnosis, butit was sufficient if they knew that their disease was a

tumor and that it was the target of their actual (and/orprevious) treatments.

Patients were considered unaware of their diagno-sis if they did not know that their disease was malig-nant, if they used inadequate terms to describe theirillness, if they thought that they had been admitted tohospice for reasons and/or symptoms different or in-dependent from their real disease, if they thought thatthey had recovered from the disease, or if they did notknow the effects of actual and previous treatments.

Patients were considered aware of their prognosisif they knew that they were in the terminal stage ofthe disease, if they had realistic plans according to theirlife expectancy, and if they knew that they had beenadmitted in hospice to receive treatments for the at-tenuation of their symptoms. Patients were consideredunaware of their prognosis if they thought that theirdisease was curable, if they had unattainable wishesand plans, or if they thought they had a life expectancylonger than 3 months.

RESULTS

Awareness of diagnosis

The study of diagnosis awareness of patientsthrough the interview with psychologists showed that70 (70%) patients were aware of their diagnosis, and30 (30%) were not aware (Table 4). Perceptions offamily members and hospice staff about diagnosisawareness of patients were as follows: 70 (70%) pa-tients were perceived as aware of their diagnosis, and30 (30%) were perceived as unaware by their familymembers; 67 (67%) patients were perceived as awareof their diagnosis, and 33 (33%) were perceived as un-aware by doctors, whereas 61 (61%) patients were per-

TABLE 2. SEMISTRUCTURED INTERVIEW

Diagnosis awareness1. Which type of illness have you got?2. Why are you recovered in this ward?3. Which are your present and previous treatments?

Prognosis awareness4. Which are your plans when you will go back home?5. Which are your wishes for the future?6. What are you expecting from the Hospice?

TABLE 3. QUESTIONNAIRE

The terms used by the patient to describe his/her illness are:adequate nonadequate

The information of the patient about the diagnosis are:adequate nonadequate

In your opinion the patient is aware of the diagnosis?yes no

The information of the patient about the prognosis are:adequate nonadequate

The patient makes projects for the next:�3 months 3–9 months �9 months

Has the patient any expectation about the therapy?yes no

In your opinion the patient is aware of the prognosis?yes no

ANDRUCCIOLI ET AL.744

ceived as aware of their diagnosis, and 39 (39%) wereperceived as unaware by nurses.

Awareness of prognosis

The study of prognosis awareness of patientsthrough the interview with the psychologists showedthat 38 (38%) patients were aware of their prognosis,and 62 (62%) were not aware (Table 5). Perceptionsof family members and hospice staff members aboutprognosis awareness of patients were as follows: 28(28%) patients were perceived as aware of their prog-nosis, and 72 (72%) were perceived as unaware bytheir family members; 28 (28%) patients were per-ceived as aware of their prognosis, and 72 (72%) wereperceived as unaware by doctors, whereas 26 (26%)patients were perceived as aware of their prognosis,and 74 (74%) were perceived as unaware by nurses.

Values of concordance � of Cohen

The highest � value for the diagnosis awareness wasfound among reports of psychologists and perceptionsof family members: 0.762 (p � 0.000) (Table 6). The �value among reports of psychologists and perceptions ofdoctors was lower: 0.653 (p � 0.000), whereas the con-cordance among reports of psychologists and percep-tions of nurses was the lowest 0.496 (p � 0.000).

A different result was observed in the concordanceof prognosis awareness. The concordance for progno-sis awareness among reports of psychologists and per-ceptions of family members, doctors or nurses was lessstrong (p � 0.597, p � 0.000; p � 0.419, p � 0.000;p � 0.458, p � 0.000, respectively) than that foundfor the diagnosis awareness.

DISCUSSION

The aim of our study was to evaluate the level ofinformation and disease awareness of patients who hadalready received a diagnosis and a series of therapieswhen they were admitted to hospice.

Psychologists used a semistructured interview to in-vestigate patients’ awareness. The questions of the in-terview were structured to determine the level of dis-ease awareness of patients, whether they knew thereasons for their admission to hospice, and to knowtheir plans, wishes, and expectations for the future. Theresults of interviews showed that 70% of the patientswere aware of their diagnosis, whereas only 38% wereaware of their prognosis. This result of prognosisawareness, along with the observation that 30% of thepatients at the last stage of disease did not even knowthat their illness was malignant, made us reflect on theimportance of the informed consent to the therapiescarried out in this phase of disease. Moreover, the anal-ysis of prognosis awareness data showed an alarmingscenario, because 62% of the patients were not awareof the worsening progress of their disease, and that itwas leading to their death.

If on one hand the majority of the patients at leastknew that they had a malignant cancer, on the otherhand, there was an extremely low level of prognosisawareness. The 38% of the patients admitted to hos-pice knew the seriousness of their illness and the prog-nosis, whereas most of them (62%) did not know thephase their illness. In many cases this was a decisionof family members, who agreed not to reveal the typeand the degree of illness progression to patients, es-pecially when those patients were very old.

TABLE 4. RESULTS OF THE ANALYSIS OF DIAGNOSIS AWARENESS

Diagnosis Aware patients Un-aware patients

Perception of doctors 67 33Perception of nurses 61 39Perception of family members 70 30Evaluation of psychologists 70 30

TABLE 5. RESULTS OF THE ANALYSIS OF PROGNOSIS AWARENESS

Diagnosis Aware patients Un-aware patients

Perception of doctors 28 72Perception of nurses 26 74Perception of family members 28 72Evaluation of psychologists 38 62

ILLNESS AWARENESS 745

In our study we wanted to investigate not only pa-tients’ awareness (as had been done in previous stud-ies) but also the perceptions of the persons caring forthem (family and staff members), in order to under-stand if and at which level their perceptions mirroredthe reality in which patients lived.

Regarding diagnosis awareness, the perceptions ofrelatives were equal to the evaluations of psycholo-gists (70%). The analysis of � concordance showedthat the 70 patients who were perceived as aware bytheir family members did not correspond exactly withthose evaluated as aware by psychologists. Indeed only65 of the 70 patients evaluated as aware by the psy-chologists were perceived as aware by their familymembers, whereas the remaining 5 patients were con-sidered to be unaware (Table 7). Similarly, 25 of the30 patients evaluated as unaware by the psychologistswere perceived as unaware by their family members,which considered the remaining 5 patients as aware.On the other hand, doctors and nurses generally un-derestimated the diagnosis awareness of the patients.

Regarding prognosis awareness, family members,doctors, and nurses thought that fewer patients wereaware than those evaluated as aware by psychologistsafter the semistructured interview (Fig. 2).

The values of � concordance showed that every con-cordance was significant. Nonetheless the highest �values, for both diagnosis and prognosis awareness,were those of the concordance between psychologistsand family members (Table 6). For this reason itseemed that the perceptions of family members werethe closest to the evaluations of psychologists. We as-sumed that this result could be due to the frequentcounseling of family members by psychologists dur-ing the hospitalization of patients.

The data showed by our study about diagnosis andprognosis awareness of patients are in agreement withother works in the literature.6–22 These studies, indeed,show that patients frequently deduce the type and se-riousness of their disease from their treatments or fromthe side effects of the drugs they are given. Only fewpatients have an accurate perception of the purpose of

TABLE 6. � CONCORDANCE VALUES FOR DIAGNOSIS (A) AND PROGNOSIS (B)

A)

Diagnosis Doctors Nurses Family membersPsychologists 0.653 (p � 0.000) 0.496 (p � 0.000) 0.762 (p � 0.000)

B)

Prognosis Doctors Nurses Family membersPsychologists 0.419 (p � 0.000) 0.458 (p � 0.000) 0.597 (p � 0.000)

TABLE 7. CONCORDANCE BETWEEN EVALUATIONS OF PSYCHOLOGISTS AND PERCEPTIONS OF FAMILY MEMBERS, DOCTORS, AND NURSES OF PATIENT’S DIAGNOSIS AND PROGNOSIS AWARENESS

Psychologists’ evaluations

Aware Un-aware

Diagnosis awarenessFamily members’ perceptions Aware 65 5

Un-aware 5 25Doctors’ perceptions Aware 61 6

Un-aware 9 24Nurses’ perceptions Aware 54 7

Un-aware 16 23Prognosis awareness

Family members’ perceptions Aware 24 4Un-aware 14 58

Doctors’ perceptions Aware 20 8Un-aware 18 54

Nurses’ perceptions Aware 20 6Un-aware 18 56

ANDRUCCIOLI ET AL.746

palliative therapy in advanced stages of the disease.10

These data suggest that there is a discrepancy betweenwhat doctors believe to be right to communicate to thepatients and the effective disease awareness of pa-tients. Despite the fact that in interviews doctors statedthat they were in favor of communicating diagnosisand prognosis to patients, the percentage of patients,knowing the type of their disease, is still toolow.12,20,21 Moreover most part of patients with can-cer in an advanced phase have an unrealistic vision oftheir own prognosis.10,14

Regarding the patients’ need for information, someauthors15 report that all the patients in their study wishto receive base information on diagnosis and treat-ments received, but not all of them wish to have moreinformation about the subsequent stages of the disease.

Other authors17,23 have shown that the need for in-formation of patients with cancer are substantial, none-theless doctors continue not to reveal the prognosisand other detailed information on the disease to them.

Moreover, it seems that the information on the di-agnosis is beneficial in establishing satisfactory rela-tions and communications between patients, family,and staff members.16 Regarding the quality of life, dis-ease awareness does not seem to worsen any aspectsof life and emotional state of patients.24 On the con-trary, the awareness of the diagnosis of patients withcancer seems to be correlated with better control of thesymptoms and to the satisfaction of patients with thecures.7

In terms of the process of acceptance and adapta-tion to the disease, the communication of the news andthe related information about treatments respond to theessential needs of patients, such as the need to main-tain control of the situation, to counteract the uncer-tainty associated with the disease conditions, and the

need of identifying, also in existential terms, the mean-ing of their own experience of disease. The awarenessof suffering from a serious disease would activate aseries of characteristic emotional reactions that canhelp the process of adaptation and acceptance of thedisease.10

Moreover, it is important to emphasize that the com-munication of information about the disease by doc-tors to patients does not correspond directly to theawareness of patients. When doctors give informationand explanations, regarding the disease to patients,many of them may have difficulty in the comprehen-sion of these information.25 The assimilation of infor-mation about their diagnosis, treatment options, andprognosis by patients does not depend only on theamount of information that they receive and the qual-ity of the interactions with doctors, but also on somecharacteristics of the patients themselves.26 The pro-cess that is used by patients to give significance to theinformation received is long and complex and is con-stituted by a progression of different levels, in whichpatients begin to comprehend their own situation andto accept it at an emotional level.27 This process canbe influenced by cultural background, needs, expecta-tions, abilities of coping with the disease, mechanismsof self-defense, and by the locus of control of dis-ease.11 Sometimes patients (in particular elderly pa-tients) do not understand the information that they aregiven and the seriousness of their disease because ofcognitive difficulties. In this case, patients can believethat the disease would not modify their life and plans.

Some authors28 believe that patients could enter andexit from the context of full knowledge of prognosis,sometimes recognizing the imminence of their deathand preparing themselves to it, sometimes also deny-ing that they are going to die. Since patients are notconstant in their emotional and cognitive answers, itis also important to take into account the role of thenegation during the final stages of the disease. Patientsmay control the way to manage the disease and deathawareness and, in some cases, forms of more or lessmarked of negation can help this purpose. Sometimesthe threat caused by disease awareness become moreimportant than the same disease and patients use mech-anisms of self-defense to protect themselves from theemotional distress, in order to prevent, slow down, oronly temporarily suspend the acquisition of awareness.Therefore, it would be useful to consider the aware-ness as a dynamic process that may change during theprogression of the disease and may be influenced bythe amount and the quality of the information receivedfrom doctors, and by the meaning that patients attributeto this information.

Diagnosis

Prognosis

70

0

20

40

60

80

Psychologists

38

67

Doctors

28

61

Nurses

26

70

Familymembers

28

FIG. 2. Patients perceived aware by the psychologists, fam-ily members, doctors and nurses.

In fact, it would be extremely important to be ableto discriminate at which level this insufficient aware-ness is a consequence of the little information receivedfrom doctors, of the difficulty of patients to interpretand accept the received information, or of all the pos-sible mechanisms of self-defense (such as negation)that take part in the dynamic process of awareness.Some studies9,11 indicate a series of questions elabo-rated in order to estimate patients awareness but it isstill not sufficient. Actually, it is of extreme impor-tance to order these questions in a standardized ques-tionnaire, that allow to find out all the mechanisms ofself-defense of patients and to better confront the per-centages of awareness found in every study.

CONCLUSIONS

Our goal was to investigate disease awareness ofpatients in hospice in order to identify the best pallia-tive care for them. Consistent with the literature,6–22

our study showed that there was a high percentage ofpatients who were not aware of their disease (30%),and most of all, they were not aware of the state oftheir disease (62%).

In this scenario, the identification of adequate pal-liative care is often difficult because patients are notprepared for the disease stage they are going to face.Indeed, relatives frequently lie to them about their dis-ease attempting to protect them. As a consequence hos-pice staff are often involved in this intricate net of lies.

The results of the two hospices studied (Rimini andSavignano-Rubicone) were similar: the majority of thepatients are not aware of their stage of disease. Hence,staff members must take this into account in order tobuild an adequate care process.

The lack of prognosis awareness has an impact onobtaining informed consent that patients should signfor the pharmacologic treatments that they would re-ceive during the hospitalization. The fact that most pa-tients were not aware of their prognosis—even if theyhad signed the informed consent—created an ethicalissue.

From a search carried out on some important med-ical databanks29 it seems that ethical issues in oncol-ogy are present in 877 bibliographic voices (reviews)from 1966 until today.

The complete and truthful information of oncologypatients is a problematic issue in routine care and inthe clinical situations. On one hand the data favor anextreme formalization of both the information to pa-tients and the informed consent. On the other hand thedata favor personalization of the information to pa-

tients, calibrating it on the real ability of patients toperceive it, and considering as a priority the respect ofthe principle of autonomy of patients.30,31 Moreoverthe data agrees that the issue of informed consent isnot only legal, but ethical and philosophical.32

The limitations of our research include the smallnumber of subjects in the sample and of hospices in-volved and the indirect evaluation of patients’ illnessawareness. Another limitation of our study is the factthat only two levels of awareness were used (aware orunaware) to describe patients disease awareness. In or-der to avoid this limitation, we are leading anotherstudy, in collaboration with the National Cancer Insti-tute of Genova, which include seven levels of aware-ness (ranging from “completely aware patient” to“completely unaware patient”). In this way it will bepossible to identify three main groups of patients:aware patients (level 1), patients with defense mecha-nisms and partially aware (levels 2–5), and unawarepatients (levels 6–7).11

For future research, it would be also interesting toevaluate if and how the level of disease awareness (es-pecially prognosis awareness) change during the hos-pitalization in hospice. The assessment of patients’awareness at different periods of hospitalization wouldhelp to identify a possible correlation between level ofawareness and range of permanence in hospice, inother words, if the hospitalization in hospice facilitatesthe development of a stronger awareness.

ACKNOWLEDGMENTS

We would like to acknowledge Dr. Ilaria Panziniassistance with the statistical analysis of the data.

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Address reprint requests to:Jessica Andruccioli

Infermi Hospitalvia ovidio 5

Rimini 47900

E-mail: jandruccioli@auslrn.net