Bad news about prognosis: why is it still so difficult?

By Nicola Grignoli.

Today the team of the internal medicine ward asked me as a psychologist to participate in a family meeting: a patient with mental disorder was to be told of a life-threatening illness. We discussed whether the patient had to be present or if the bad news should be disclosed to the partner first. Why is it still so difficult? This old claim of R. Buckman is still relevant. Breaking bad news is always difficult to do and difficult to experience. An empathetic doctor or nurse would much prefer to avoid confronting a patient with hopelessness so as not to risk causing harm. Better to avoid it. Is that true?

Contemporary storytelling gives us some counterexamples. Literature highlights how adverse prognosis can boost vitality and reveal unexpected opportunity or meaning in life. Cinema shows how illness awareness and open communication can strengthen personal growth and interpersonal bonds in friendship and family. So why in hospital is respect for the principle of autonomy (clear and transparent information) seen as dangerous? How do healthcare professionals (HPs) deal with this?

The conflict between these two moral principles is, in fact, an everyday challenge in critical wards such as intensive care or in specific ones like oncology, and in areas faced with the greatest chronicity like rehabilitation or with end-of-life palliative care. The challenge is an ethical and clinical one. In Switzerland, art.10 of the medical code of ethics states that ‘doctors have to carefully evaluate how they intend to inform patients and what information the patient is able to stand’. They are faced with the question of how to communicate diagnosis and prognosis and how much, and this entails gauging the patient’s ability to bear the information psychologically.

How can clinicians in such critical hospital settings evaluate this ability? The main psychological factor to be mentioned here is hope, a double-edged powerful source of human resilience which should be supported but not encouraged unrealistically (not telling the whole truth could increase hope). In wards where a health psychologist is present, the procedure of communicating with the patient benefits from an integrated approach. More often, doctors and nurses discuss among themselves to decide on the way, and in some cases what to communicate to the patient. They sometimes employ what is described in the above-mentioned code of ethics and known as therapeutic privilege, in other words, the option of omitting to give some information for the good of the patient.

This qualitative study aims at giving a voice to those health professionals who are involved in this difficult task. It has investigated the valuable strategies employed to manage this routine challenge in the clinician-patient relationship. The thematic analysis carried out with HPs working in different clinical settings highlighted two strategies that help to minimise the harm of the communication and maximise the benefit: respect for the patient’s timing and respect for the patient’s wishes regarding knowledge of the prognosis.

According to the doctors and nurses who were interviewed, this attitude of respect and the ability to listen make it possible to increase the patient’s awareness of the prognosis without removing hope. The fact of being prepared to wait and knowing the patient’s preferences allow HPs to understand possible psychological defence mechanisms or to consider the patient’s wish to delegate their own autonomy to family members. Interdisciplinarity, particularly between doctors and nurses, is the key to achieving better prognosis communication. Obstacles to this good practice are seen to be organisational factors in the hospital and the HPs’ own emotional feelings when faced with communicating a particularly unfavourable prognosis. Further research is needed in particular to explore the risk of such communication on their own sense of despair.

It is my wish that the data collected in this study could help enrich the current debate on therapeutic privilege in medical ethics. Discussion shows how a third way, which allows the conflicting moral principles to be balanced and reinforced, is possible. With a person-centred approach, the prognosis can be communicated in all honesty, nurturing the patient’s subjective realistic hopes. The role of family members, to whom in Italian-speaking Switzerland information is traditionally delegated, is recognised and discussed according to the relational autonomy approach. It is a patient’s right to decide whether they want to know the truth or prefer not to know, and to temporarily delegate this right to relatives if they agree to assume this burden.

Time has come for a shared prognosis communication which enables both respect for an individual’s dignity and positive psychological resources. It is hoped that the results of this study will encourage organisational and interpersonal conditions to further solidarity and common responsibility in that delicate moment which affects an individual’s view of the future.

 

Paper title: Hope and therapeutic privilege: time for shared prognosis communication

Authors: Nicola Grignoli, Roberta Wullschleger, Valentina Di Bernardo, Mirjam Amati, Claudia Zanini, Roberto Malacrida, Sara Rubinelli

Affiliations:

Nicola Grignoli, Consultation-Liaison Psychiatry Service, Organizzazione Sociopsichiatrica Cantonale, Mendrisio

Roberta Wullschleger, Sasso Corbaro Medical Humanities Foundation, Bellinzona

Valentina Di Bernardo, Clinical Ethics Commission, Repubblica e Cantone Ticino Ente Ospedaliero Cantonale, Bellinzona

Mirjam Amati, Information and Process Management/Supportive Area, Direzione Generale Ente Ospedaliero Cantonale, Bellinzona

Claudia Zanini, Department of Health Sciences and Medicine, University of Lucerne

Roberto Malacrida, Sasso Corbaro Medical Humanities Foundation, Bellinzona

Sara Rubinelli, Department of Health Sciences and Medicine, University of Lucerne

Competing interests: None declared.

Social media accounts of post author: @NGrignoli

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