NURSE-PATIENT COMMUNICATION, INTERDISCIPLINARY COMMUNICATION, AND PATIENT SAFETY

Original Manuscript

Ethical perspectives in communication in cancer care: An interpretative phenomenological study

Paola Melis University of Cagliari, Italy; Universitat Rovira i Virgili, Spain

Maura Galletta University of Cagliari, Italy

Cesar Ivan Aviles Gonzalez University of Cagliari, Italy; Universitat Rovira i Virgili, Spain

Paolo Contu University of Cagliari, Italy

Maria Francisca Jimenez Herrera Universitat Rovira i Virgili, Spain

Abstract Background: In cancer care, many clinical contexts still lack a good-quality patient–health professional communication about diagnosis and prognosis. Information transmission enables patients to make informed choices about their own healthcare. Nevertheless, disclosure is still an ethically challenging clinical problem in cancer care. High-quality care can be achieved by understanding the perspectives of others. The perspective of patients, their caregivers, physicians and nurses have seldom been simultaneously studied. Objective: To investigate the phenomenon of diagnosis and prognosis-related communication as experienced by patients, their caregivers, and both their attending nurses and physicians, to enlighten meanings attached to communication by the four parties. Methods: A qualitative study using interpretative phenomenological analysis was performed. Participants and research context: Purposive sampling of six patients, six caregivers, seven nurses and five physicians was performed in two oncological hospitals in Italy. Ethical considerations: Local Ethics Committee approved the study. It was guided by the ethical principles of voluntary enrolment, anonymity, privacy and confidentiality. Results: Three main themes were identified: (a) the infinite range of possibilities in knowing and willing to know, (b) communication with the patient as a conflicting situation and (c) the bind of implicit and explicit meaning of communication. Conclusion: The interplay of meanings attached by patients, their caregivers, and their attending oncologist and nurse to communication about diagnosis and prognosis revealed complexities and

Corresponding author: Maura Galletta, Department of Medical Sciences and Public Health, University of Cagliari, SS 554 Bivio per

Sestu, Monserrato, Cagliari 09042, Italy.

Email: maura.galletta@gmail.com

Nursing Ethics 2020, Vol. 27(6) 1418–1435

ª The Author(s) 2020 Article reuse guidelines:

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ambiguities not yet settled. Physicians still need to solve the ethical tensions in their caring relationship with patients to really allow them ‘to choose with dignity and being aware of it’. Nurses need to develop awareness about their role in diagnosis and prognosis-related communication. This cognizance is essential not just to assure consistency of communication within the multi-disciplinary team but mostly because it allows and enables the moral agent to take its own responsibilities and be accountable for them.

Keywords Cancer, communication, diagnosis and prognosis, ethics, interpretative phenomenological analysis, meanings, multi-perspective

Introduction

In Western countries, the process of diagnosis and prognosis-related communication in cancer care is

approached as a phenomenon related to information exchanges between patient and clinician and

within healthcare professionals, as well as to the relationships occurring among all the speakers,

including caregivers. 1

This suggests that quality of health professional–patient communication is

linked to the quality of communication and coordination within the team, 2

and that informal care-

givers also play a crucial role in managing patients’ cancer disease. 3,4

Nevertheless, literature high-

lights that many clinical contexts are still lacking a good-quality patient–health professional

communication regarding end-of-life preferences and prognosis disclosure, 5,6

and information prefer-

ences for patients with advanced cancer are still unmet. 7

As information transmission enables patients

to make informed choices about their own healthcare, it can be said that, in cancer care, disclosure

issue is still an ethically challenging clinical problem. Moreover, although there has been advance-

ment in cancer treatments, cancer is still associated with suffering and death. Perceptions and beliefs

surrounding cancer disease still hamper regular interactions and communication. 8,9

There is evidence

that the main barriers to effective communication and information sharing are fragmented commu-

nication, uncertainty around patient consent and the unacknowledged existence of overlapping care

plans. 10

On the contrary, prognostic disclosure has been associated with more realistic patients’

expectations of life expectancy, 11

and discussions on prognosis seem to strengthen the relationship

between patient and oncologist. 12

Literature has also shown that good collaboration among health

professionals is essential for high-quality care 4

and that patient-centred care is enhanced by both good

inter-professional communication and acknowledgement of the interdependence of each one’s role. 13

However, the perspectives of patients, caregivers, physicians and nurses have been seldom studied all

together. 14

Dyadic 15

and triadic 16

communicative interactions have been investigated in some previ-

ous qualitative studies, but they limit the analysis to a portion of the context of care. Interpretative

phenomenological analysis is a qualitative method used in health-related research to understand

human experiences that are essential to the participants. Interpretative phenomenological analysis

contributes to move beyond a biomedical model of the disease to get insights about self-reported

experiences and the meanings that individuals assign to those experiences. 17

Studies with a multi-

perspective design and adopting interpretative phenomenological analysis are quite recent and still

few. 14,18

In our research, we focused on the communication experience by investigating simultane-

ously the perspectives of patients, their caregiver, their attending oncologist and their attending nurse.

This study is part of a larger research aimed to explore communication issues related to diagnosis and

prognosis in oncological wards.

Melis et al. 1419

Aim

This study intended to investigate the phenomenon of diagnosis and prognosis-related communication as

experienced by patients, their caregivers, and both their attending nurses and physicians, in order to

enlighten the meanings attached to communication by the four groups of participants.

Methods

This study was conducted using an interpretative phenomenological analysis, which is a qualitative research

approach that values ‘a detailed experiential account of the person’s involvement in the context’ (p. 196). 19

Interpretative phenomenological analysis allows for catching communication meanings through narration

of participants’ experiences within a cultural, social and personal world, 19

so, it can be said that the method

implies an interpretative approach enriched by descriptive notes. 20

Following interpretative phenomeno-

logical analysis philosophical roots – that come from Heidegger’s philosophy – meanings are always

created through interactions, including those with researchers. 21

According to it, the researchers’ pre-

conceived concepts and personal world cannot be kept apart from the investigation, but they can represent

a tool to conduct the analysis. 22

On this basis, interpretative phenomenological analysis develops a

double-hermeneutic circle where ‘the participants are trying to make sense of their world; the researcher

is trying to make sense of the participants trying to make sense of their world’ (p. 53). 23

According to the

idiographic focus of interpretative phenomenological analysis, this study explores the perspectives of

individuals in their unique context of life. Besides, this study adheres to interpretative phenomenological

analysis’ request to illustrate and describe themes by a rich reporting of excerpts from participants’

accounts. 19

Study inclusion and exclusion criteria

The main inclusion criteria for patients were to be at least 18 years old and being diagnosed with cancer. An

inclusion criterion for nurses was attending on the interviewed patient for at least two shifts. An inclusion

criterion for physicians was attending on the interviewed patient. Caregivers were selected upon indication

of the interviewed patients. General exclusion criteria were to be less than 18 years old and have cognitive

impairment.

Study participants

Patients were recruited upon introduction by the interviewer of the research purpose. Eligible nurses

and oncologists were purposively enrolled after the patient. Patients were enrolled based on homo-

geneity of patients’ life expectancy of less than 1 year, according to the attending oncologist. This

selection criterion for patients was used to pursue a fairly homogeneous sample, as suggested by

Smith for interpretative phenomenological analysis studies. 19

Successively, available caregiver was

selected and the physician and nurse who attended on the patient during his or her disease trajectory

were selected. A total of 24 participants corresponding to six groups of four members each (patient,

his or her caregiver, and his or her attending physician and nurse) were recruited. According to Reid

and colleagues, 24

exploring a phenomenon from multiple perspectives is a kind of triangulation that

can help researchers to develop a more detailed and variegated description of that phenomenon.

Nevertheless, this is possible only with a small sample (5–10 participants). 25

Therefore, based on

this suggestion, six participants for each role (patients, caregivers, physicians and nurses) are con-

sidered as a very good sample.

Table 1 shows the characteristics of the study participants.

1420 Nursing Ethics 27(6)

Ethical considerations

The study complies with the principles of the Declaration of Helsinki and the Italian Privacy Law (GDPR

679/2016). The study was approved by the Independent Ethics Committee of the Azienda Ospedaliero-

Universitaria di Cagliari, Italy (Act n.2.27; 25 July 2016). At the enrolment stage, researchers provided

written and oral information about the purpose of the study. Participation was voluntary and anonymous;

confidentiality was assured and guaranteed to all participants. All the interviewees gave their written

informed consent and were informed that they could leave the study at any time without penalty. Pseudo-

nyms were used for all patients in order to preserve anonymity. Moreover, the researchers paid attention to

the participant’s emotional status and respected it by shortening and finishing the interviews when needed.

Data collection procedure

The study was conducted in two oncology departments of two big hospitals from southern Italy. Narrative

interviews were carried out in the departments in which the patients were treated. A researcher expert on the

topic performed interviews from August 2016 to February 2017. A set of interview guiding questions was

developed (see Figure 1), based on previous pilot interviews; questions were used very flexibly in order to

Table 1. Summary of participants’ characteristics.

Patients (n ¼ 6) Caregivers (n ¼ 6) Physicians (n ¼ 5) Nurse (n ¼ 7)

Gender Man ¼ 4; woman ¼ 2 Man ¼ 0; woman ¼ 6 Man ¼ 2; woman ¼ 3 Man ¼ 1; woman ¼ 6 Age 19 years ¼ 1

56 years ¼ 1 63 years ¼ 1 64 years ¼ 1 65 years ¼ 1 77 years ¼ 1

Average age ¼ 57 years

52 years ¼ 1 55 years ¼ 1 62 years ¼ 1 67 years ¼ 1 68 years ¼ 1 72 years ¼ 1

Average age¼62.7 years

40 years ¼ 1 42 years ¼ 1 45 years ¼ 2 55 years ¼ 1

Average age¼45.4 years

36 years ¼ 1 37 years ¼ 1 46 years ¼ 1 47 years ¼ 1 54 years ¼ 1 58 years ¼ 1 59 years ¼ 1

Average age¼48.1 years School

level Primary school ¼ 2

Secondary school ¼ 2 Master degree ¼ 2

Primary school ¼ 2 Secondary school ¼ 2

Master degree ¼ 2 Tenure Experience as

oncologist: 6 years ¼ 1 12 years ¼ 1 16 years ¼ 2 23 years ¼ 1

Average tenure ¼ 14.6 years

Experience in an oncological ward:

3 years ¼ 1 10 years ¼ 2 16 years ¼ 1 19 years ¼ 1 20 years ¼ 1 27 years ¼ 1

Average tenure ¼ 15 years

Cancer type

Breast cancer ¼ 1 Rare cancer ¼ 2

Abdominal cancer ¼ 2 Lung cancer ¼ 1

Interview length

Minimum: 13 min; maximum: 60 min

(mean ¼ 35 min)

Minimum: 12 min; maximum: 48 min

(mean ¼ 24 min)

Minimum: 13 min; maximum: 26 min

(mean ¼ 17 min)

Minimum: 20 min; maximum: 68 min

(mean ¼ 39 min)

Melis et al. 1421

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elicit the participant’s experience. Prompt questions were used to encourage the interviewees to elaborate

their thought based on their experience. All the performed interviews were audio recorded and verbatim

transcribed, including a brief description of non-verbal aspects of the interviewees.

The patient was always the first one to be interviewed, but it was not always possible to follow a

scheduled sequence for the other participants of the subgroup, because of their unpredictable temporary

unavailability. In any case, all the four parties of each subgroup were interviewed within 2 or 3 days from

each other, except for one group in which the interview time span was of 3 weeks, due to organizational

problems. In a case, two nurses who attended on the same patient desired to be interviewed at the same time;

all the other interviews were conducted separately. During the recruitment process, one physician refused to

be part of the study. Thus, our final sample of 24 participants included six patients, six caregivers, seven

nurses and five physicians.

Data analysis and rigour

Data analysis was conducted according to the procedure indicated by Smith et al. 19

for interpretative

phenomenological analysis studies. According to this procedure, an inductive approach has been used to

process data. In a first step, each researcher did an attentive reading of each transcript following the

interviews’ chronological order for each group unit (patient, caregiver, nurse and physician). Second, once

an overall sense of the data was gained, each researcher wrote initial textual notes describing any relevant

issue; in the following step, emergent themes were developed by each researcher, via abductive reasoning.

In a fourth step, the researchers looked for connections across emergent themes; this process included a first

analysis in which data from each participant were analysed separately, and then they were analysed for each

group unit and across the group units. This process intended to privilege the comparison of the four parties

across the six groups and, at the same time, safeguard the connection of the four participants at the group

level. Moreover, it allowed the researchers to better interpret each single part in relation to the whole and

vice versa. Until this point, the researchers proceeded separately: each researcher produced a list of few

main themes. Then, the researchers met and triangulated their findings conciliating them by retracing back

all the previous steps. This final discussion allowed the researchers to identify the final main themes, by

following a subsumption process. In fact, according to Brocki and Wearden, 17

in contrast with content

analysis that produces ‘a quantitative analysis of discrete categories from qualitative data’, in interpretative

phenomenological analysis ‘the importance of the narrative portrayal is dominant’, and its aim is to provide

‘a detailed interpretative analysis of themes’ (p. 99).

Data analysis was supported by using Atlas.ti version 7.5.7. To achieve credibility, a constant engage-

ment with the data was maintained throughout the entire data analysis process and a rich amount of

interview quotes has been provided. Confirmability was attained through triangulation of all the steps of

data analysis by the researchers. Transparency was achieved by highlighting the study’s challenges and

difficulties.

Researchers also paid attention to self-reflexivity with respect to their own values and orientation, as it is

required by interpretative phenomenological analysis method. The multi-disciplinary team fostered com-

parison of their personal and professional background and the attention on how those could influence on

different phases of the study. Moreover, the researchers have background and expertise adequate to conduct

this kind of study and to manage potential method bias. Specifically, P.M. is an expert clinical nurse, she

also earnt her master degree in Philosophy and worked for many years with people with cancer. C.I.A.G. is

an expert clinical nurse and worked in mental health contexts. M.G. is psychologist and associate professor

in Nursing. She is PhD and expert of quantitative e qualitative research. M.F.J.H. is associate professor in

Nursing. She is PhD and expert in bioethics. P.C. is full professor, PhD and expert of research in Health

Promotion. Almost all the researchers have been also caregivers of a close relative affected by cancer.

Melis et al. 1423

Operational tools used to foster self-reflexivity were (a) field note – taken after interviews – including

reflections on both feelings and emotions of the interviewer, which were commented with the other

researchers during the data analysis procedure, and (b) audits conducted among the researchers during the

different phases of the study.

Results

The results have identified three main themes: (a) the infinite range of possibilities in knowing and willing

to know, (b) communication with the patient as a conflicting situation and (c) the bind of implicit and

explicit meaning of communication. The first theme is represented in all the four parties and describes the

mix up of cognitive and emotional reactions arousing communication related to diagnosis and prognosis.

The second theme is related to the role of health professionals: how nurses and physicians interpret their role

and how the patient and his or her caregiver perceive it. The third theme concerns an experience of

communication as expression of a personal and intimate world. This theme takes shape in patients and

caregivers as a silent but expected request of recognizance of the existential dimension, and it emerges in

nurses and physicians as a fundamental part of care and cure relationship. Figure 2 summarizes main

perspectives of the four participants for each theme.

The infinite range of possibilities in knowing and willing to know

Patients and caregivers describe their experience about diagnosis and prognosis-related communication as

an experience that admits an infinite range of possibilities in knowing and in the will to know. Angelo,

Daniela and Nella, in fact, describe themselves both as informed and uninformed, willing to be informed

and wanting to know no more. Nella, different from the other two patients who were diagnosed few months

ago, is under treatment since almost 2 years, she values a lot her autonomy and admits that what cost her the

most is to ask for help, she also recognizes to have contrasting feelings and attitude towards communication

and information transmission and says,

The results (for my examinations) were always picked up by me, I read them, but I don’t understand them and I

ask the doctor [ . . . ] I mean [ . . . ] I don’t want to understand them; it’s not that I don’t understand them, that’s

different.

Daniela, who – according to her caregiver – should well understand her health status because she has a

high school–level education, declares a willing to know and recalls all the questions she already asked the

doctors; she refers to have always received a proper answer, but she recognizes that all those questions are

not so significant and concludes,

Even now [ . . . ] I don’t find the courage to ask it [ . . . ] maybe one day I will try to ask it to my oncologist.

Some other patients, like Sergio, Piero and Mario, present their decision to receive limited medical

information as a shared decision with their oncologists and relatives. Mario, who is very young, is aware that

he does not exactly know what is happening to his body, but he values this ignorance as the price to ‘stay

calm’. He knows that his disease is a very serious one: he tells that he has been diagnosed more than 2 years

ago and has undergone several chemo treatments. He explains his choice like this:

I prefer to be like this [ . . . ] because if I would know more I would have more worries . . . and maybe this could

worsen my condition [ . . . ] maybe [ . . . ] better not to know anything and have minimal details that only can

reassure.

1424 Nursing Ethics 27(6)

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1425

Other patients, like Sergio, who is already retired, show difficulty to conciliate what they have been told

and what they know. He is attending the oncological ward since few months and concludes his interview by

saying,

Sooner or later, I should know the truth, only that [ . . . ] I’m afraid of truth [ . . . ] do you understand?

But previously he had already admitted that

They [the doctors] said me that [ . . . ] they told me clearly [ . . . ] do you understand? He called me in his office –

there was my wife too – and when he said it [ . . . ] the world fell on me! Do you understand?

Many caregivers also describe communication related to diagnosis and prognosis as an experience of

contrasting willing and feelings and as a knowledge not possible to confine into the opposite poles of

knowing or not knowing. Nella’s caregiver describes her loved one’s attitude towards communication as the

display of contrasting behaviours, but she does not interpret it as an inconsistency:

Of course there is an inconsistency [ . . . ] but I’m not sure whether it is an inconsistency; you would like to know

more and more because you would like to discover that [ . . . ] your worries are excessive [ . . . ] that after all [ . . . ]

the situation can be seen in a [ . . . ] way . . . , but if you are searching more, you’re afraid to discover the contrary.

So, you prefer to stay in a limbo in which you would like to know, but you can’t.

Caregivers recognize that patient needs to know what is happening, but at the same time, they underlie

that patient also seeks and needs continuous reassurance. In the caregivers’ stories, the patient’s character

and the emotional costs of knowledge appear to be important factors to understand the patient’s attitudes

and to decide which communication approach is more suited for him or her. Angelo’s caregiver declares that

her loved one and she are perfectly aware of the seriousness of his health conditions because they were

informed of the advanced stage of his disease by the oncologist. Nevertheless, to the question if she

considers it is better to know or not to know, she answers,

I don’t know, I don’t know: knowing too much is upsetting, but maybe knowing too little is also upsetting. Who

can say which the right measure is? In between knowing and not knowing there are an infinite range of

possibilities.

The theme of the various degree of knowledge emerges in physicians’ narratives (and in some of the

interviewed nurses) either as the patient’s capacity to understand the real meaning of the information

received by physicians or a partial information received by them. Physicians refer this capacity as the

patient’s will to confront himself or herself with bad news. Concerning that point, Sergio’s physician says,

It has been the head physician to tell him that the surgery he underwent couldn’t eradicate the tumour. Therefore,

he knows the diagnosis, namely a disease that is not cured by the surgery but that is still there and that is a quite

severe disease, because his liver has been affected. I told him that he had to be treated just by chemo and by oral

therapy. So, it has not been told anything unreal [ . . . ] if one should tell all and everything [ . . . ] I don’t believe

that this would be the rightest thing to do [ . . . ] I don’t know [ . . . ] anyway, the patient understands what he wants

to understand! Anyway, the patient was thoroughly informed of the disease.

In addition, Piero’s and Sergio’s nurses consider awareness disconnected by any kind of intellectual

capacity. Piero’s nurse is working in an oncological ward since many years; she loves to talk with patients

and thinks that almost all her patients know their diagnosis but, at the meantime, notices,

1426 Nursing Ethics 27(6)

In our ward there were physicians that didn’t understand any (!) [ . . . ] I mean, once they have become patient,

they, that were physicians and nurses [ . . . ] well, once they were admitted in our ward, they forgot to be

physicians, they forgot all the staff they studied [ . . . ] like if they knew nothing.

Communication with the patient as a conflicting situation

The interviewed physicians talk about their communication approach as an information-giving to let the

patients know what is going on: the diagnosis and the therapeutic course they should undergo. This

information transmission is perceived as something that they need to modulate because it is also a potential

harm to patients’ psychological well-being. This position is well presented by Mario’s physicians, an expert

oncologist, who explains his communication approach with his young patient:

I believe that we have been quite detailed [ . . . ] in one case and in the other, that is both towards the patient and

towards his relatives. It is a situation in which the psychological implications are very heavy [ . . . ] and [ . . . ] the

[ . . . ] let’s say that the fuzziness that we have maintained in providing information to the patient is motivated by

the need not to create an excessive psychological distress that could lead him to dismiss therapy.

On this basis, physicians consider as a duty to inform the patient about his or her diagnosis, but they also

maintain that it is upon them to decide, case by case, the extension and the timing of information. They

declare to generally conform to the norm to inform the patients in order to obtain their informed consent to

therapies, but they also take into account that knowledge has the power to provoke huge emotional reactions

such as hope or despair. These reactions are deemed a big resource or, vice versa, an insurmountable

obstacle to treat and cure the patient. A practice solution adopted by most physicians to both preserve hope

in patients and fulfil their duty to inform the patients is to avoid talking about prognosis if not requested. The

conflictual situation is so approached by Daniela’s physicians:

I think it’s essential to know [ . . . ] but it’s evident that not anybody can bear the information so I think

information should be, how to say it, adjusted upon emotional sensitivity, upon the patient’s capacity to manage

this kind of information but, anyway information should be given to patients in a complete way, absolutely! but

one can be less explicit about prognosis, especially with regard to the advanced stages of the illness.

Only Nella’s physician, by highlighting a correspondence between the missed knowledge of prognosis

by the patient and the missed knowledge of the patient’s will about end-of-life care by the physician, speaks

of physicians’ ethical responsibility in conciliating contrasting urgencies and needs implicated in diagnosis

and prognosis-related communication. She explains,

[ . . . ] what is still problematic [to make the patient understand] [ . . . ] is the choice [ . . . ] between not to do

anything, because actually there is no chance to get anything better and therefore [ . . . ] just to undergo palliative

care, or undergo therapies until the last days. This issue, perhaps, was not faced with my patient. In some patients,

this may be due to a communication problem, I mean, the difficulty to make the patient understand it and help

him/her to make an aware choice, while preserving his/her dignity.

All the nurses state that they usually do not investigate if the patient knows or does not know his or her

diagnosis and prognosis. Nurses even declare that they do not start conversations somehow related to

diagnosis and prognosis because this issue is not their business but physicians’. They also recognize that

patients and relatives not always receive appropriate information about both prognosis and life expectancy

and observe that this hampers patients’ faculty to decide about end-of-life treatments. Nurses believe that

their role is limited to support patients’ positive state of mind and not to investigate or modify patients’

Melis et al. 1427

knowledge or awareness about their diagnosis and prognosis. Mario’s young nurse, although she would

prefer to know what the patient knows about own diagnosis and prognosis, shares that opinion as well. She

explains,

What do you want me to do more than encourage him somehow(?), that is, I would never feel like actually saying

how things are or how . . . because in any case it’s not my job and therefore not . . .

Yet, all the nurses report to have been addressed by patients and caregivers’ questions about life

expectancy, treatment efficacy, terminal care and so on. Nurses’ narratives are also plenty of anecdotes

about patients’ awareness and considerations about communication related to diagnosis and prognosis.

Piero’s nurse affirms to conform to the norm that she was taught when she was a young nurse: never to talk

to the patient about his or her disease but, then goes along telling,

. . . someone tells you ‘I’m undergoing treatments, but I know that they don’t work’ Yes! It happens! There are

patients that do like that. It happened to me that a patient told like that and I replayed ‘Why do you follow

treatment, then?’ . . . ‘Who knows??!! Just to try it, but anyway I know that they don’t [ . . . ] that this time, this

time it’s not going to be fine for me’.

Nurses generally perceive disclosure, when prognosis is fatal, as an ambivalent value: a positive value

because it allows patients to decide about their own life and a negative one because it is incompatible with

maintaining hope. The perceived ambivalent value of knowledge sustains an experience of communication

related to disclosure as a conflict between being truthful or dishonest, an unsolvable alternative between

being virtuous or supporting patients’ hope. Angelo’s nurse, in commenting her own answer to a patient

who asked her if she was going to die, explains,

If I had said the truth, what would be changed? I would have increased her distress and she would have lived her

last days more distressed. I felt guilty because I lied. [ . . . ] I said to myself: ‘liar!’ But, in that moment, it was for

me the only way to calm her.

Patients experience communication to their physicians as mere information about diagnostic exams: an

update about disease evolution and an explanation of the proposed therapies. However, all the patients refer

to have received some form of reassurance, together with information by their oncologist. Moreover, most

of them retain that the wishful amount of talking and the actual talking with the attending physician is barely

coextensive.

Patients with the highest school degrees as well as those with low education note that physicians use an

adapted language to inform them about diagnosis and seriousness of the disease. Piero says,

They are very delicate; they don’t tell ‘you have cancer’ they can never tell it to you! They use terms that we,

common people . . . they use terms that I don’t know.

Although patients seem to expect that the physician do not spontaneously tell the patient everything, they

feel to determine the amount of information they desire to receive by asking or refraining from asking

specific questions, and feel confident to receive trustworthy information from their physicians. This is

evident, for example, in Daniela who tells of when she asked to a physician if she would have been able to

walk again:

She [the physician] told me it! [ . . . ] maybe because they [physicians] too want to tell the truth! Times have

changed and they don’t hide it to the patient anymore. I do agree with it, maybe if I were them, I’ll do the same

thing.

1428 Nursing Ethics 27(6)

Overall, patients experience communication to their nurses as something that appears to be with-

held by the patients themselves. They do not identify an obstacle in nurses’ attitude – who usually are

described as polite and kind – but they justify this missed communication by blaming themselves to

not want to talk about or by telling that nurses are too busy to do it. Nella refers to have never had a

real conversation with nurses and thinks that most of them are not interested in listening patients’

story. She says,

[ . . . ] because if they had also to bear a patient’s problems . . . because here patients are patients who you meet

today and in a few days you could meet them no more . . . and if they should put themselves in each patient else’s

shoes, I think it would be too hard to do as a job.

According to the patients’ report, most of their communication interactions with nurses regard explana-

tions about the therapies. No patient tells about conversations started by a nurse. Piero is very explicit about

it:

[ . . . ] no, not with nurses. First of all, they don’t talk. They put on drips, they do things, up and down, they don’t

know these things [disease, diagnosis and prognosis]: they have documents, they have to administer, timetable

[therapies] [ . . . ] but I’m not one who bothers nurses.

All the caregivers refer themselves as information receivers. They refer to stay close to their loved one

when information is given and to act on their behalf. They appear to be aware with regard to the physicians’

attitude to refrain from giving explicit and detailed information to the patient. Caregivers tend to support

this stance because it can protect the patient from despair. However, they feel allowed to advice physicians

about the communication approach they consider most suitable for their loved one. Piero’s caregiver says,

They [the physicians] have been very delicate, also because we’ve told them [ . . . ] because he’s a very emotional

person, so we advised the physicians [ . . . ] to be very delicate in informing him [the patient] about the severity of

the disease.

The bind of implicit and explicit meaning of communication

In Angelo’s and Nella’s narratives, diagnosis and prognosis communication emerge as a dense bind of

implicit and explicit meanings to which participants are sensible and, in the meantime, constantly

exposed. Angelo’s narrative is the most explicit: he says that since he has known his diagnosis, his

main question is ‘what is happening to me?’ He knows he has ‘cancer’, his oncologist told him, but

that is not enough to him. He thinks that no medical terms used by physicians can answer to his

question and that the medical usual way to talk about the disease is just a veil that hides the real

issues at stake. He says,

We all keep these things at a distance because we can’t live asking always those questions. This is just a way to

solve the problem, to give an answer also for who we are, where we come from, where we are going. But these are

questions that are never asked or are asked in a banal form.

The unspoken existential meaning of ‘those questions’ can be found, according to Angelo, in those

caring actions – such as changing the diaper to an adult man – that he names ‘spontaneous communication

forms’, and that he considers as

Not much different from an intimate contact, namely, a spiritual contact with [ . . . ], with our biggest worries.

Melis et al. 1429

Piero’s, Mario’s and Angelo’s nurses point out that their communication with patients is something that

often encompasses topics related to personal values and existential meanings and that can be realized

through attentive listening, gazes and touching.

According to these nurses, it is by providing direct care that they have opportunity to know the patients

and their attitude towards the disease and, sometimes, to understand their awareness of diagnosis and

prognosis. The other nurses too, describe their conversation with the patient as something that goes on

while performing nursing procedures. Nevertheless, nurses also admit that nowadays they are evermore

neglecting to provide direct care because of both bureaucracy burden and time constraints and because of

fragmentation of the care among different health workers as well. A tendency that nurses dislike and that the

older nurses compare to the past when, as Piero’s nurse says:

The bed rounds somehow forced you to talk, talk not just of the disease, if they knew their health condition, but

[ . . . ] sometimes they were saying [ . . . ] talking about themselves, of their home business, of their children, do

you see? We used to spend time with them, and they were pleased to talk with us.

The perceived bond between not-explicit request of information and implicit will to not knowing one’s

own prognosis is the result of a reasoning that physicians adopt to justify their refraining from prognosis

disclosure. Based on this reasoning, Angelo’s, Sergio’s and Daniela’s physicians believe to respect the

patients’ autonomy and, at the meantime, to preserve them from an avoidable psychological suffering.

Daniela’s oncologist declares,

The principle that guides information transmission is that [ . . . ], every person who undergoes therapy, every kind

of therapy, has to be the one to decide if he/she wants to undergo to it or don’t. He/she has to be informed to be

able to decide [what to do].

However, when it comes to ask what he thinks regarding his patients’ awareness about prognosis, he

says,

I don’t think she is [aware], she has asked nothing, so it was said nothing about prognosis [ . . . ], but it has been

emphasised that her disease was in an advanced stage and that our aim was to slow down the disease.

Nella’s caregiver notes that the capacity to enter into an authentic relationship with the patient, under-

standing his or her feelings and how the disease is affecting his or her life, is meaningful not only for the

patient but also for the attending healthcare professional, as it permits to go beyond the mere technical

function. This capacity, according to Nella’s caregiver, is the core of a healthcarer’s role and, when this is

not there

The importance of that figure [the healthcare professional] during a patient’s disease trajectory could have no

weight and the ill person could consider him/her simply as an instrument.

Discussion

This study aimed to explore the experience of patients, caregivers, nurses and physicians on diagnosis and

prognosis-related communication with respect to the connected meanings. In the oncological literature,

there are not many studies adopting a multi-perspective design, 14

but this kind of design allows for

considering the context of relationships in which disease and care are experienced. 26

Moreover, looking

at how meanings are attributed and interwoven allows for seeing and comparing the different moral

perspectives on diagnosis and prognosis-related communication embraced by the four figures participating

1430 Nursing Ethics 27(6)

in the study. Our findings show that all the participants are involved in and feel affected by diagnosis and

prognosis-related communication. The context of diagnosis and prognosis-related communication appear to

be characterized by contradictory perceptions and fragmented experiences in which individuals struggle to

rearrange their ideas and their values. Patients’ contradictory statements emerged also in Ohnsorge et al.’s 27

study that investigated the wish to die in hospice cancer patients. The authors suggested that conflicting

values and aims could be considered as belonging to the process of meaning-making and negotiation about

normative claims, namely, those statements that ‘directly or indirectly include moral claims regarding

oneself or others’ (p. 630). 27

In our study, the contradictory and fragmented process of meaning-making

seems to involve all the four parties interviewed and to go beyond the normative claims. Contradictions and

fragmented processes emerge from the patients’ narratives with respect to knowledge, feelings, expecta-

tions and will to know. Nurses too refer contradictions with respect to the perception of patients’ informa-

tion needs. Physicians use contrasting adjectives to describe their giving-information to patients and point

out that they usually face conversations about diagnosis and prognosis just according to a therapeutic

perspective. In addition, nurses are aware of being addressed by patients and caregivers in conversations

related to diagnosis and prognosis. However, in the meantime, they retain that this is not their issue. This is

coherent with patients’ and caregivers’ opinions as well: they refer no communication interactions with

nurses about diagnosis and prognosis-related issues. This missed communication seem to be linked to both

the stereotype of the common Italian nurse 28

– who does not speak about diagnosis and prognosis with

patients, because they are only medical competencies – and the patients’ perception of being an emotional

burden for nurses. We think that these aspects can limit the interactions between nurse and patient and nurse

and physician, and deserve to be attentively addressed by nurses because they represent a main ethical

challenge for a caring profession. Chiefly, the lack of appropriate communication between patient and

nurses may lead to unrecognized and unsatisfied patients’ needs and to increased risk of litigation based on

what is called ethical malpractice. 29

Ambivalence is perceived by the participants as knowledge’s ethical

trait and not just as a feature of patients’ unstable wishes and expectations. In fact, the vision of what will

happen – induced by the knowledge – appears to participants as both empowering and disempowering for

the patient. In our study, not all patients declared willing to have prognostic information, some did not

express his or her will and some expressed an ambivalent will. These data expand what was found by Innes

and Payne 30

in their review according to which most of the patients wanted some broad indication of their

prognosis, but that preferences for detailed information were more varied. Our data are also concordant with

Kirk et al.’s 31

findings that enlighten patients’ ambiguous attitude towards information: they wanted to be

told but they did not want to know at the meantime. In those patients who expressed the preference to not to

investigate further on their own prognosis, knowledge appears to be a competing value for self-control over

their own emotions. The patients’ different attitudes and priorities regarding disclosure highlight the ethical

importance to provide a personalized diagnosis and prognosis communication in accordance with each

single person needs. On health professional side, we observed a physician’s tendency to not deepening

prognosis aspects in order to save the patient’s hope; this is a phenomenon well known in literature. 32,33

The

observed tendency appears to be a controversial situation in which physicians theoretically declare to be

favourable to the opportunity to communicate the truth to patients, but at the same time, they conform to the

ethical norm in a flexible way and based on the context and situation. Overall, physicians tend to draw upon

principles of biomedical ethics to construct arguments for their communication approach on diagnosis and

prognosis. Physicians’ readiness to make exceptions to the proclaimed norm – depending on patient

characteristics – seems to be a not unusual finding in so-called high-context cultures, such as those of the

Mediterranean basin. 34

Our findings are also in line with those of another Italian study that enlightened a

discordance between ethical principles declared by health professionals and communication approaches

with patients. 35

While physicians in their communicative approach seem to refer to the two ethical prin-

ciples ‘do good’ and ‘do not harm’, without perceiving their behaviour as conflictual, nurses seem to refer to

Melis et al. 1431

the virtue ethics, perceiving their involvement in communication related to diagnosis and prognosis as an

unsolvable dilemma between being truthful and being supportive and reassuring for patients. This reveals,

on one hand, the nurses’ strong sense of ethical commitment towards the patients in staying close to them.

On the other hand, it emphasizes the difficulty to accompany the patients along their path of awareness of

the prognosis and prepare them for the end of life. This conflicting attitude and unconciliated ethical calls

can obstruct care relationship between nurse and patient. Health professionals stuck in the conflict between

contrasting ethical norms were also observed in previous studies. 36,37

Oberle and Hughes 38

already found

that the key difference between doctors’ and nurses’ perceptions about ethical problems in end-of-life

decisions was that doctors felt responsible for making decisions and nurses perceived themselves forced

to live with these decisions. In our study, this condition is manifest also in nurses’ worries and precautions

not to trespass professionals’ boundaries or to give information and, at the meantime, in their attention to

patients’ communication needs. Besides, the assumption of responsibilities on diagnosis and prognosis-

related communication appears quite different between physicians and nurses. Nurses, in fact, tend to

dismiss any responsibility, considering communication related to diagnosis and prognosis as a physician’s

duty. Although in participants’ narratives, communication related to diagnosis and prognosis is often

framed by the medical information pattern, participants refer their communication experience as going

beyond the simple information receiving/transmitting scheme. Professionals and informal caregivers, in

fact, underlie the importance to pay attention on what is beyond the first explicit meaning in the patient’s

words and catch the real inner meaning that become comprehensible through sensitivity and the relationship

established with the patient. Nurses experience this kind of communication not only as a form of holistic

attention to the person, but also as personal attitude, at the boundary of their own professional role. Vice

versa, for patients and caregivers, it is paying attention to the person and not just to his or her health

problems that is accomplished by the authentic nature of nurse and physician profession. The existential

dimension referred by all the participants describes the ethical background in which communication is

perceived: the respect of the individual dimension is at the core of any caring relationship. This finding

expands what is already emerged in literature: in medical communication, not only information aspects are

considered relevant but also physicians’ caring attitudes. 39,40

Patients and family members expect health

professionals to be able to deal also with not strictly medical issues. 41

Strengths and limitations

The present research has encountered several difficulties. First, the patients’ clinical conditions and the

timing of ordinary care impacted the average length of the interviews. Second, nurses and physician

constraint of time caused many unattended appointments for interviews, thus prolonging the phase of data

collection. There are also some study limitations: doctors’ point of view was less represented if compared

with that of nurses. This is because one of the attending physicians changed idea and refused to be

interviewed. Another limitation is that caregivers were represented only by the female gender. This is

because, during the recruitment process, we asked patients to freely select a significant caregiver for them,

thus resulting in a prevalence of women among caregivers. Furthermore, the difficulty of recruiting groups

of four interrelated participants (patient, his or her caregiver, and attending nurse and physician) implicated

that the selected sample of patients was homogeneous regarding life expectancy, but their disease-related

experiences could be quite heterogeneous, also in the last year of life. Moreover, available staff in the

departments was not so numerous and not all the oncologists and nurses showed interest in participating in

the research. For these reasons, we were not able to reach data saturation for all the perspectives because, in

line with Dickie, 42

‘there was always new information to be had’ (p. 52). This limitation, together with

contextual problems, reduces generalizability of our results. Nevertheless, this study adds important experi-

ential considerations to the existing research that usually considers only bi-directional aspects of clinical

1432 Nursing Ethics 27(6)

communication. In fact, in our study, we investigated both shared and distinct perspectives of the four

participant parties, which is an additional value for qualitative research.

Conclusion

Our study shows that diagnosis and prognosis-related communication, when prognosis is fatal, is experi-

enced by patients and caregivers as a puzzle of contrasting perceptions and feelings by physicians and

nurses as a scenario of concurrent and conflictual values. Moreover, the perceived bind of explicit and

implicit meaning in communication underlies the importance of the existential level and the significance of

the relationship among carers and cared. The interplay of meanings attached by patients, their caregivers,

and their attending oncologists and nurses to diagnosis and prognosis-related communication has revealed

complexities and ambiguities not yet settled. Physicians still need to resolve the ethical tensions present in

diagnosis and prognosis-related communication. Oncologists find themselves at an impasse when they have

to ‘make the patient understand’ that ‘there is no chance to get anything better’ and when they should ‘help

him or her to make an aware choice, while preserving his or her dignity’. We suggest that physicians, in their

effort to provide realistic and patient-tailored information, can be more able to prefigure hope through

different means than just the cure; collaboration may be sought from caregivers and from nursing staff.

Nurses should address and reflect upon the fact that they perceive their role extraneous to diagnosis and

prognosis-related communication but, at the same time, they prefer to be involved by patients and care-

givers in similar conversations, thus owing them support and truthfulness. This implies that nurses need to

develop awareness and reflect upon their role in communication related to diagnosis and prognosis. Aware-

ness and reflection about everyone’s role and influence in the communication interplay is essential not just

to assure consistency of communication within the multi-disciplinary team but mostly because it allows and

enables the moral agent to take its own responsibilities and be accountable for them. Reflection upon the

meaning that patients and caregivers attach to communication related to diagnosis and prognosis could be

helpful for assisting nurses and physicians to provide sensitive care and to prompt a personalized commu-

nication approach.

Acknowledgements

The research team would like to thank Tanya Castagna for her invaluable contribution in reviewing the

manuscript for English language considerations.

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or

publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

ORCID iD

Maura Galletta https://orcid.org/0000-0002-0124-4248

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