Plain English summary
Background
Methods
Participants
Data collection
1. Please describe a situation that left you unsatisfied in which you delivered bad news (or in which you assisted someone else delivering bad news) in your clinical practice.
Please, describe the situation, actors involved, how, where, and when it happened, and why it was unsatisfactory in your opinion.
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2. What meaning did you give to this critical event? Please, describe your impressions and feelings regarding the situation.
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3. What did you learn from this experience? If you could go back, would you have acted differently?
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4. Are there any tools, information, personal or professional skills of yours capable of helping you manage such event in a better way?
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STEP | DESCRIPTION |
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Setting up | Be prepared for bad news conversations: find a private space, introduce oneself, involve significant others, sit down, manage interruptions. |
Patient Perception | Assess the patient’s perception of the situation and what he/she already knows and wants to know in order to tailor the bad news communication to the patient’s level, correct any misinformation and determine the patient’s understanding and/or denial. |
Invitation | Assess how much information the patient wants to know and seek the patient’s willingness before sharing. If patients do not want to know the details, offer to be available and answer any questions as they may arise in the future. Determine the bare minimum of information that is necessary to share and begin by focusing on that. |
Knowledge | Before informing the patient, signal the patient that bad news is about to be conveyed. When sharing information, avoid medical jargon and excessive bluntness; provide information in small chunks and periodically check the patient’s understanding; repeat information several times. |
Emotions | Respond to the patient’s emotional responses (shock, disbelief, anger and/or grief). Let the patient express his or her feelings; offer support by naming the patient’s emotions and normalizing such feelings. Use empathic response also to acknowledge the clinician’s own emotions. |
Strategy and Summary | Summarize the main points and, if the patients are ready, discuss the treatments options available or follow-up plans. Frame the information and future hope in terms of what it is most meaningful to the patient and still possible to accomplish. |
Data analysis
Results
DEFINITION OF BAD NEWS [38] | SPECIFITIES OF ART CONTEXT |
“Any information which adversely and seriously affects the patient’s view of his or her future” | → reiteration of bad news → the “patient” is a couple → there is not a disease to cure →existential failure for the couple → professional failure for the clinicians (“no enemy, no healing”) |
SPECIFITIES OF ART CONTEXT | |
Setting up | → communication by telephone → communication as a two- step process |
Patient Perception | → difficulty in managing the lack of information and/or the misinformation |
Invitation | → difficulty in balancing the couple desires to know with the clinicians’ need to be clear → besides what the couple wants to know, establishing what the patients have to know |
Knowledge | → joining the medical aspects of communication with the psycho-social ones → allowing patients to feel active and reduce their sense of powerlessness |
Emotions | → anger as the most difficult reaction to manage |
Strategy and Summary | → giving back to the couple a new meaning of the ART experience and an opportunity to grow |
Definition of bad news
“…it is an uninterrupted series of bad news…like something that starts rolling, and in the meanwhile even the period confirms the bad news” (Female, gynecologist)“A cycle fails and after numerous cycles, the whole therapy fails” (Male, gynecologist)“The first impact for the couple is not so negative: at the beginning we do not communicate anything negative, couples come with great hope and we offer therapies, the possibility to became pregnant…the bad news is when we have to stop the treatment (Male, gynecologist)”“The shift from first to second level techniques for the patient is bad news, because you think ‘what difference will it make if in vitro fertilization is used as an alternative?’” (Female, ART patient)
“We need to remember that we are speaking to a couple and not a single patient…the communication could have a different effect: we are speaking to two persons who are receiving the same news, but who could react in completely different ways” (Female, gynecologist)
“Who is the enemy? We do not work against a disease, but against a symptom. The object of our work is not lung cancer or pancreatic cancer; our object is the fact that the couple cannot reproduce” (Male, gynecologist)
“Femininity is always represented with a big womb…so there is the crushing of self-esteem, an awareness that the couple will never realize that project and that there is a biological clock that is expiring” (Male, gynecologist)“It is a failure of an emotional project, of something that goes beyond illness and that deals with existence” (Female, obstetrician)“After such a big, physical, emotional, economic investment, even time consuming, seeing everything collapse …it is difficult to get back up again” (Female, ART patient)
“You have to prepare couples to the idea that they might not be able to have children…Our work is similar to the work of an oncologist: I’ve seen death in the ART context, it is the death of women, of the couple, of self-esteem, of self-image…it is a different type of death, but still similar” (Male, gynecologist)
“The first bad news is to need ART treatment, and the second is that ART treatments have no sure results” (Female, gynecologist)“It seems that we need to excuse ourselves with patients for the fact of having to communicate that there is a 20% possibility of success. I do not think this happens in oncology” (Female, gynecologist)“I was wondering if the professional failure in ART context could be considered peculiar due to the fact that there is not an ‘enemy’, the aim of the clinician is not the healing” (Male, health communication expert)
“Just as in oncology, where the doctor does everything possible to help the patient live, in assisted reproductive medicine the doctor also helps the couple generate life, and when these possibilities are questioned, there is a big failure experience” (Female, psychologist)
Tracking the six-step SPIKES protocol
Step 1: Setting up the interview
“We clearly adhere to the Buckman model; setting up the interview is fundamental: you need a place where to speak, you need time, you need to be prepared and well informed” (Male, gynecologist)
“An everyday occurrence for me is to communicate a negative beta hCG and the consequent failure of the treatment…for me it is a big discomfort and I feel a sense of guilt… relationship for me is essential, if I do not see the patient, I am not able to understand the feedback, I can only interpret the pauses, the silences, but I do not understand the feelings” (Female, obstetrician)“For what concerns phone consultations, clear instructions are necessary… we need to identify who is authorized to answer the telephone and be trained to communicate bad news” (Female, gynecologist)
“It is a two-step process, always: when the patient calls, the bad news has to be delivered, but it is difficult in that moment to have the time to face the matter in depth…but once the communication has been given, there is always a following face-to-face appointment with the doctor” (Male, gynecologist)“In our Center for a certain period only the physicians gave the bad news, but we noticed that patients were suffering because they did not receive the biological explanation of what had happened…now biologists have restarted to call the patients and we observed a positive feedback from them” (Female, biologist)
Step 2: Patient perceptions
“It is plausible that some emotive mechanisms impede the comprehension of reality” (Female, psychologist)“There is great misinformation. Couples generally do not know that the treatment has a low possibility of success. They do not know that at 45 years of age there are no possibilities of success” (Female, ART patient)“What makes everything difficult is the lack of knowledge of the basic physiological aspects of reproduction: when you offer an ART treatment, couples think that success is automatic” (Male, gynecologist)
Step 3: Invitation
“How can we apply Step 3? I agree with the approach of ‘Ask before talking’, understanding what couples’ expectations are, but defining with patients what I can explain and what I cannot is very hard” (Male, gynecologist)“While with oncologic patients you can accept that they do not want to know about the probability of death, the ART context is different because anything that goes wrong, and was not explicit before, comes back in an explanation request from patients, who sometimes are also rancorous” (Female, gynecologist)
“Unlike oncology, in ART there is some information that patients need to know, they need to have awareness of the clinical data that is inalienable” (Male, expert in health communication)“The reality check is the first point, it is as prerequisite to proceed” (Male, gynecologist)“The uncertainty of the treatment, in my opinion, has to be present from the very outset. It is the unsaid that patients do not want to deal with” (Female, psychologist)“At a certain point, you need to put a full stop: maybe patients do not want to know in the beginning, but then you have to communicate that the situation is critical” (Female, gynecologist)“It is important to know that the results are not certain, it is an important point to start from, and of course hoping that you will obtain the pregnancy…undoubtedly the uncertainty is bad news, but it is a certain news that allows you to construct a psychological path…it is important for a patient to not live with too much illusions” (Female, ART patient)
Step 4: Knowledge
“I rarely use the term ‘techniques,’ I prefer to talk about a ‘path’” (Male, gynecologist)“It is a way to consider the reproductive inability not only from a biomedical point of view, but also at a psychosocial level: ART is not only percentages, failures or successes, embryos, numbers…it is also a matter of considering the history of the couple and of the single patient, their feelings, their desires and expectations” (Female, obstetrician)
“Resting after the embryo transfer has no sense from a clinical point of view, but for the patient it could be useful to lie down, not go to work…as if it were possible to control an event on which there is no form of control whatsoever” (Female, gynecologist)“An oncologic patient usually accepts to entrust the management of his/her disease to someone else…for what concerns fertility, a doctor should not be necessary, so with our therapies we are depriving couples of their autonomy” (Male, gynecologist)
Step 5: Emotions
“If they cry, at least I can offer tissues…the problem is when they do not cry, because if the patient gets angry, tissues are useless” (Female, gynecologist)“We usually point out with a code in the medical chart the couples that, in our opinion, could have a strong emotional reaction” (Male, gynecologist)“It is important not to consider anger as a personal attack against the doctor; you have to show them that you can understand that they are angry and you are sorry...if you react, you argue” (Female, gynecologist)“…it helps to name all the anger, disillusion, discomfort…” (Male, gynecologist)“The immense delusion of the failure of the first attempt…many patients fall in depression…the fall is physiological, clinicians should help patients to stand up again, in order to carry on with the treatments, when it is possible” (Female, ART patient)
Step 6: Strategy and summary
“It is crucial to retrace with the couple all the steps carried out, what we chose together, understanding how they feel, giving them a new interpretation, listening to the couple and offering an alternative” (Female, obstetrician)“What can we give back to the couple, apart from the bad news? We have to value their efforts and help them make a different choice” (Male, gynecologist)“Two years after the ART failure, a couple came to me with their two adopted children to introduce them to me…I understood that maybe I failed as an ART professional but not as a doctor” (Male, gynecologist)“I think it is important to give value to the role of patients’ associations, that, besides clinicians, could help patients to accept other perspectives of life, adoption or even childlessness” (Female, ART patient)