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: [email protected]

Ethics
2020, Vol. 27(6) 1418–1435

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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

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 Ethics 27(6)

Ethical considerations

The study complies with the principles of the Declaration of Helsinki and the Italian Privacy (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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1422

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

. 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 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 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 …