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Research Article

Conveying hope in consultations with patients with life-threatening diseases: the balance between supporting and challenging the patient

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Pages 143-152 | Received 23 Nov 2016, Accepted 27 Apr 2017, Published online: 06 Jun 2017

Abstract

Objective: There is limited knowledge about the communication of hope and denial in consultations with patients with life-threatening diseases on a practical level. In this study, we explored a real-life medical consultation between a doctor and a patient with incurable cancer, focusing on conveying hope.

Design and methods: We found one consultation especially suited for illustrating how a physician can convey and reinforce hope without attaching it to curative treatment. The consultation was analysed using a method for discourse analysis, where we took as a point of departure that discourse means language in use.

Results: The doctor communicated in a recognising manner, expressing respect for the patient as a subject and an authority of his own experiences. The doctor and patient succeeded in creating a good working alliance characterised by warmth and trust. Within this context, there was room for the doctor to challenge the patient’s views and communicate disagreement.

Conclusions: The doctor succeeds in conveying and maintaining hope. Within a good working alliance with the patient the doctor can convey hope by balancing between supporting and challenging him. Exploring and grasping the patient’s real concerns is essential for being able to relieve and comfort him and convey hope.

Introduction

Background

Communication is an essential part of medical work and a good doctor–patient relationship is crucial for the patient’s experiences with being helped. Communication is an interaction between at least two subjects who simultaneously understand and interpret. The actions of one part influence the other’s actions and vice versa. Patients tell a lot about what is necessary for a good relationship with the doctor, and expressions such as recognition, enablement, empathy, understanding, reassurance and confirmation are used [Citation1–5]. In psychology, one talks about a therapeutic alliance, or a working alliance, in patient–provider relationships [Citation4,Citation5]. Psychotherapy is not dealing with special techniques, but about an interpersonal relationship created by the therapist and the client. The therapist’s clinical attitude is nothing inside the therapist, but only what is expressed in interactions with the patient. As Schibbye has stressed, interpersonal recognition is a relational concept based on mutuality, equality, and a basic respect for another person as a subject and authority of his or her experiences [Citation4,Citation5]. At a practical level, recognising behaviour involves listening, understanding, acceptance, tolerance and confirmation.

Good communication is especially demanding in consultations with patients with life-threatening diseases and research on the topic has addressed patients suffering from cancer in particular; often in terms of discussing prognosis. In such research, a recurring result is that patients with cancer want honest and complete information [Citation6–10]. Both the majority of patients with early stage cancer [Citation8] and patients with metastatic cancer [Citation9] considered individualised and realistic disclosure from a confident, collaborative, supportive cancer specialist to be more hopeful than avoidance. Moreover, most patients, carers and professionals have expressed that concealing or distorting the truth does not engender hope [Citation8]. Whereas oncologists often underscore the importance of being open and honest when discussing the end of life with patients [Citation7], a minority of patients and carers expressed preferring nondisclosure and found hope in avoiding the truth [Citation11,Citation12]. The researchers emphasised the importance of respecting individual preferences. Patients have the right to refuse information. In particular, giving patients information that they do not want or at a time when they do not want it is not regarded as respecting individual autonomy [Citation11,Citation12]. The aspects of communication that patients have most valued are those that help them and their families to feel guided, that build trust, and that support hope [Citation13]. Patients report being supported by clinicians who empathically respond to their emotions [Citation6]: ‘Silence can “speak” loudly to tell the patients that the doctor is comfortable with them taking their time’ [Citation6].

Hope and denial

When asked about what they perceive as most important in consultation, especially when discussing a poor prognosis, both doctors and patients have emphasised conveying hope as essential [Citation6,Citation7,Citation11]. At times, hope is attached with an offer of treatment [Citation14,Citation15]; however, both doctors and patients have emphasised the importance of hope independent of prognosis and treatment possibilities [Citation6,Citation7,Citation11]. In fact, patients seem able to maintain a strong sense of hope despite having accepted that their life expectancy is limited [Citation11,Citation16]. In such situations, patients have identified diverse sources of hope, which indicates the importance of professionals’ being able to explore and foster realistic forms of hope that are meaningful for individual patient [Citation11]. Hope cannot be ‘given’, but patients can be directed toward new foci of hope and allowed to make individual decisions. The balance between hope and realism is vital. Some professionals have expressed that allowing patients to imagine a highly unlikely outcome can help them to come to terms with the reality of their situations at their own pace [Citation17]. Meanwhile, other professionals have felt a responsibility to help patients refocus on realistic, achievable hopes in order to avoid wasting their time and energy with futile treatments. In particular, they related that withholding information could prevent patients from forming realistic hopes.

In literature about communicating with patients with incurable illnesses, death denial is a recurring theme. Zimmermann [Citation18–20] performed a discourse analysis of the concept of ‘death denying’ in 30 articles from clinical and palliative care literature to find that terminally ill patients and their families are often referred to as being ‘in denial’ of impending death. Meanwhile, Rayson [Citation21] has described how we all live with a component of denial. He argues that mortality denial on a daily basis is a highly adaptive coping mechanism used to help all of us live as well as we can for as long as possible; goals that we all seek in the care of those with metastatic disease. Recognising the importance of denial as an adaptive coping mechanism should make all individuals more sensitive to the timing and context of difficult conversations about death and dying. Penson et al. [Citation22] has argued that hope does not require any action at all; it is very passive but it requires very active listeners.

There are guidelines and advice for conducting conversations with patients with life-limited illness prognoses, and a great deal of literature has addressed how healthcare professionals should communicate with and bring hope to patients with incurable disease. Such studies are typically based on interviews with patients, family caregivers and healthcare professionals or on clinicians’ experiences. To our knowledge, however, research exploring communication about hope and denial on the practical level remains limited.

Aim

In this study, we explore a real-life medical consultation between a doctor and a patient with incurable cancer, by paying particular attention to conveying hope.

Design and methods

Materials

We accessed 380 videos from doctor–patient encounters at a university hospital in Norway previously collected as part of a randomised controlled trial evaluating the effect of communication skills training [Citation23]. The Regional Ethics Committee for Medical Research in South East Norway approved our study. Fifty-nine hospital physicians, all less than 60 years old, and 380 patients had previously given broad consent for future communication studies based on the video material. From the 380 videos, we formed a randomised sample of 80 videos with physicians of both genders from different medical specialties, excluding paediatrics. We systematically watched the videos in search of consultations with patients with life-threatening diseases in which the doctors and patients discussed hope. Of the 80 videos, we identified four consultations in which we interpreted hope to be an explicit topic of conversation. We selected one of those consultations, 22 minutes in length, which we found suitable to illustrate how a physician can convey hope without attaching it to any curative treatment. In order to present longer sequences of the doctor–patient interaction in detail, we chose to analyse only the one consultation, which involved neither clinical examinations nor tests. In that sense, the only medical outcome was the dialogue between the doctor and patient.

Discourse analysis

We analysed the consultation by using a method of discourse analysis [Citation24–26]. The term ‘discourse’ has been used in many varying ways [Citation27]. Here, we take as the point of departure that discourse means spoken language in use [Citation24]. Discourse analysis assumes that language, action, knowledge and situation are inseparable and that context is vital. Nessa [Citation24] conceives talk as an essential part of medical action and emphasises that talk is medical work. Since words affect the shaping of the world, both the structure of the communication (the medical consultation as the context) and the themes discussed (the patient’s illness) constitute the meaning of the dialogue as a medical conversation [Citation25].

Discourse analysis can be divided into four steps: registration, transcription, coding and interpretation [Citation26]. Following registration of the consultation on video, the first author transcribed the dialogue word by word into data – written text. We also watched the video several times to identify and take notes about the nonverbal communication related to each statement throughout the dialogue. Consequently, we summarised a few sections in which the doctor and patient discussed issues of less interest regarding hope. We read the transcript to gain an overall impression of the interaction and grasp the meaning as a whole. As a third step, we performed coding. That is a methodological procedure to classify what happens in a conversation and to produce text-based units suitable for further analysis, by dividing the consultation into episodes according to themes discussed in . An episode is a section of discourse with a continuous topic and linguistic markers from its start and finish. The fourth step, interpretation, is a reflexive process between data material and theory. Our interpretation was carried out within perspectives on conveying hope. We situated our knowledge about doctor–patient communication as a starting point, i.e. a medical conversations in the context of consultation.

Box 1. A case study: I am doing fine.

Results

A case story: I am doing fine

A man in his mid-50s has visited an outpatient clinic for a follow-up meeting with a specialist in internal medicine. The patient is HIV-positive and has incurable lung cancer. The doctor begins the consultation with a question that signals that he knows the patient well from earlier consultations (See ).

Interpretation and discussion

The aim of our study was to explore a real medical consultation in which a doctor talks with his patient with incurable cancer from the perspective of conveying hope. Our analysis showed how the doctor contributes to conveying hope by balancing between challenging and supporting the patient, who himself introduces themes of hope to the conversation. Trying to grasp the patient’s concerns, the doctor listens to the patient and explores his perception of the situation. Without understanding what actually worries the patient, the doctor cannot comfort him or contribute to conveying and reinforcing hope. At the same time, the patient’s potential denial of his life-threatening illness is explored. In this case, the doctor does not reveal any denial in the patient. Below, we elaborate on those findings by giving an account of the interpretation process and describing how collaboration between the doctor and patient creates and strengthens hope.

Conveying hope – balancing between supporting and challenging the patient

The consultation begins with the patient’s recounting his journey and the doctor’s listening to him. In their engaged discussion about ice hockey, the doctor communicates that he and the patient have that interest in common. The patient seems comfortable in the situation. This introduction can be characterised as small talk without medical interest. The doctor–patient relationship is, however, essential in medical work. There is argued that it is important that the doctor and patient function as a team without hierarchy in a mutual, equal therapeutic alliance [Citation5,Citation22]. We understand their small talk as the doctor’s way of building and reinforcing his relationship with the patient, recognising him when he communicates equality and respect to him by valuing his activities. The doctor’s questions are also highly medically relevant. The patient’s story informs the doctor about the patient’s health condition, how he manages his illness, and how he enjoys life. In reply to the doctor’s question, the patient several times convincingly tells him that he is fine (Episode 2). The doctor listens attentively to his account; he seems to tune in to the patient’s feelings, share his feelings, and after a short pause, responds that he is delighted to hear that the patient is doing fine. We believe in the authenticity of the doctor’s response and interpret the doctor as being supportive and respectful. We think that he shares the patient’s feelings and, at the same time, does not discount his own, given his awareness that the patient’s feelings are the patient’s. In Episode 3, the doctor asks about treatment at the hospital; the patient, however, introduces his plans for a trip to Europe, and the doctor continues talking about that theme with interest. In Episode 4, the doctor relates to what the patient said earlier when he asks about the patient’s friends. The doctor listens and gives the patient time and space to express his thoughts, and they share the patient’s experiences with his friends’ feelings of sorrow. In Episode 5, when the doctor meta-communicates that the patient has black humour, we interpret the doctor’s observation as recognition of the patient’s way of managing his situation. In accordance with Cassell’s emphasis on an ill person’s functioning [Citation28], the doctor seems to appreciate the patient’s functioning well and communicates his observation to the patient as a way to support him. The patient’s response to the characterisation indicates that he feels understood and appreciates the doctor’s sympathy. Thereafter, a longer conversation about the patient’s funeral and visit to the priest follows, in which the doctor displays a sympathetic, supportive attitude characterised by interest in the patient’s thoughts and plans. When the patient tells the doctor that his children do not know that he is mortally ill, the doctor, however, challenges the patient’s view and explores the patient’s reason for not wanting to inform his children. The doctor disagrees with the patient and attempts to convince him. When the patient, upholds his decision not to inform the children, the doctor communicates that he disagrees with the patient and that he, at the same time, understands and respects the patient’s choice. According to Schibbye, recognition embodies a fundamental respect for the other person’s right to his or her own perspective, and that a relationship of recognition can bear disagreement [Citation5]. In Episode 6, we again interpret the doctor as being empathic and supportive when he emphasises his delight in hearing that the patient is doing well, perhaps in an effort to restore harmony following their discussion about possibly involving the patient’s children in his end-of-life affairs. In Episode 7, the doctor introduces the prognosis, and it becomes clear that the patient realises his serious medical condition and poor prognosis. The doctor seems to want to comfort the patient by saying ‘but that is, after all, only statistics’, and remarkably, the patient succeeds in arguing that his illness management will improve his prognosis. Salander et al. [Citation16] have also found that patients with fatal forms of cancer have been able to use various cognitive manoeuvres to create a sense of protection and unite reality and hope. The doctor confirms the patient’s estimations of the situation by referring to scientific arguments, yet perhaps drawing upon them slightly more than what is scientifically based. In our opinion, that communication captures the essence of hope described by Penson et al. [Citation22]: ‘Hope is … at one and the same time both an anticipation of something positive and a positive acceptance of the inevitable’. Penson et al. [Citation22] have argued that if one assumes what hope means for the patient, then a serious rupture in trust and communication has occurred. By contrast, this doctor awaits the patient’s reasoning and refrains from assuming what the patient’s hope involves. The episode ends with an agreement between the doctor and patient that a person’s attitude toward illness bears consequences for his prognosis. However, we estimate that such a stance does not derive from denial. It would perhaps be both improper and mistaken to challenge the patient’s understanding that ‘being depressed and feeling discouraged all of the time will never make you healthy’. In Episode 8, the doctor requests the patient to continue coming to control and argues for the importance of taking his medicines. We interpret this as the doctor’s seizing the opportunity to both challenge and support the patient to reach his goal in life and to proceed with his travels. They seem to cooperate about maintaining hope. In Episode 10, they disagree on the meaning of palliative treatment. The patient argues that since he has no pain to ease, then the treatment should be called preventive, not palliative. The word ‘palliative’ can be associated with end-of-life treatment and thus threaten the patient’s hope [Citation29]. The doctor does his best to convince the patient that the disagreement is only linguistic. Then the patient again affirms that he feels well, perhaps to comfort both himself and the doctor, re-establish harmony in the conversation, and ultimately, maintain hope.

A therapeutic alliance

The importance of building an equal doctor–patient relationship – a therapeutic alliance – by attentive listening, recognition, responsiveness and guidance in communicating with patients, particularly those with incurable illness, is emphasised in the literature [Citation2,Citation4,Citation13,Citation22]. In the video, we could observe attentive listening; the doctor tunes in and seems to share the patient’s emotions. He remembers what the patient told him, shows interest, and further explores different topics by asking about the patient’s travel plans, ice hockey and funeral preparations, all of which gives the patient space to tell. The doctor acknowledges the patient’s choices, wishes and goals, as well as the resources with which he has dealt with his situation: black humour, a creative use of statistics, and an appetite for living. Hagerty et al. [Citation9] have found that patients discuss quality of life and the fulfilment of goals in order ‘to get on with life, make sure you make the most of it for as long as you can; set a distant goal and work like hell to go there’. That appraisal aligns well how the patient in our case apparently manages his situation. We do not know whether it is realistic for the patient to pursue his travels, but indicating doubt might not help the patient. Penson et al. [Citation22] have written, ‘There is no thing as false hope, there is just hope. Interfering with that hope is risky. We have to do all the right stuff we want to do medically but also be hopeful in a way that resonates with patients and families’. Studies have found that patients’ sense of hope is strong despite their acceptance a having limited time left in their lives [Citation11,Citation16].

We interpret the doctor’s actions – his statements and gestures – as conveying hope by balancing between supporting and challenging the patient in the consultation. The doctor seems to emphasise and succeed in creating an equal and mutual relationship with the patient: a therapeutic alliance in which they work well together. A warm atmosphere of mutual recognition characterises their interaction. During the consultation, the doctor tries to grasp the patient’s understanding of his situation by exploring and challenging what that situation means. He avoids seeming to know what is best for the patient. The patient seems to trust the doctor, dares to communicate his opinions, and even raise objections.

Overall, our interpretation is that the patient feels well during the consultation. Campbell et al. [Citation6] have argued that though the doctors cannot soften or eliminate the facts related to a lethal cancer diagnosis, patients have reported being supported by clinicians who empathically respond to their emotions. The doctor in our case does just that, and we think that the patient feels that he has been helped in the consultation.

Ensuring the medical agenda

Initially, it seems that the patient dominates the consultation. However, the doctor in fact initiates nearly every episode, introduces most of the themes, and seems to have good control over the consultation. The structure of the medical consultation is easy to recognise. The doctor allows the patient to discuss different topics and listens with interest to his accounts, yet repeatedly poses questions in suitable situations without interrupting the patient. He asks about the patient’s condition, his friends, and his children and mentions the prognosis, medication and treatment plan. The patient receives time and space to share his stories but seems to finish his speech in a way that affords room for the doctor’s agenda as well. Their interaction function well and seems harmonious without competition for an understanding of reality, and both parties appear to be pliable and to facilitate turn-taking. At the same time, the doctor displays respect for the relationship with the patient and for the medical agenda.

Methodological considerations

Registration with video is the most commonly used method for collecting qualitative data from doctor–patient consultations, for such interactions are precisely recorded without overly interfering with the communication [Citation26]. We found that coding the dialogue in episodes was an appropriate way of classifying what happened in the consultation and of producing text-based units suitable for further analysis.

We found the method of discourse analysis to be suitable for analysing the consultation. Drawing upon literature about hope and denial, we based our analysis on our interpretation of the patient and doctor’s conversation and interactions. By presenting most of the consultation, we have provided readers with clues to understanding our interpretation. We have sought to describe the method in detail so that readers can follow the process. We argue that the chosen consultation was suitable for illustrating how to convey hope by balancing between supporting and challenging patients. Within the doctor’s calm, recumbent attitude and style, his communication is clear, and it is easy to grasp his respectful, recognising way of approaching the patient. The patient has no symptoms, has an extraordinarily positive attitude, and brings with him many elements understood as aspects associated with hope; as a result, the consultation seems very easy for the doctor. Although we cannot know how the doctor in our case would have managed meeting a patient in pain, a hopeless state, or an existential crisis, we think that physicians can learn communication skills from his example. Since it is an easy consultation for the doctor, he can clearly demonstrate ways to create a therapeutic alliance and exhibit a recognising attitude in practice.

Conclusions and practical implications

In this article, we have described how a doctor conveyed hope to his patient with incurable lung cancer, balancing between supporting and challenging him. The doctor communicated in a recognising and respectful manner, and he and the patient succeeded in creating a good working alliance characterised by warmth and trust. The context afforded room for the doctor to challenge the patient and communicate disagreement. Patients and doctors are different, and there are many ways of communicating hope. Characteristic of this doctor was his calm attitude and affirmative, recognising communication using few words and small gestures. We argue that our results can be relevant even for patients in pain, in grief, or who struggle with regret and loss of meaning. A prerequisite for bringing hope to patients, especially seriously ill ones, is creating a warm working alliance guided by mutual recognition as a relational concept involving mutuality, equality, and a basic respect for the other person as a subject and authority of his or her experiences. The doctor and patient in our case knew each other in advance and seemed to have a good relationship. During the consultation, the doctor seized opportunities that arose to build and reinforce unity and trust. Exploring the patients’ view and challenging his meanings became essential to grasping his real concerns. We think that our results also can be applicable to other medical consultations in corresponding settings, specifically in primary healthcare. Cancer patients represent a significant patient group for general practitioners and they see themselves as key workers in end-of-life care [Citation30]. By and large they feel confident, but they feel less competence about taking care of social issues [Citation30]. General practitioners usually have long-lasting, trusting relationships with their patients and would perhaps feel more confident by focusing more on exploring patients’ concerns by challenging them and recognising their right to their personal experiences and perspectives.

Notes on contributors

Anne Werner, PhD, Sociologist. Researcher at Health Services Research Unit (HØKH), Akershus University Hospital (Ahus), Lørenskog, Norway.

Sissel Steihaug, MD, PhD, General Practitioner for 20 years, Senior Researcher at SINTEF since 2004.

Acknowledgements

We wish to thank Bård Fossli Jensen, MD PhD, for the original video corpus collection. We are also grateful to Professor Pål Gulbrandsen, MD PhD, for access to the recordings and for valuable comments on our manuscript.

Disclosure statement

The authors declare that there is no conflict of interest.

Additional information

Funding

The study was funded by Akershus University Hospital and SINTEF Technology and Society.

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