What is serious illness is and what the role of communication in serious illness is

There is no direct explanation but, a serious illness can be explained as a condition that carries a high risk of mortality, negatively impact the quality of life and daily function, and/or is burdensome in symptoms, treatments or caregivers stress.

Examples of serious illnesses: cancer, dementia, heart failure, diabetes, lung diseases.

Importance of communication: The moment patients are diagnosed, they need good communication: what is going on, what are their options, feel they are seen, someone is caring for them (patient and family).  

Patient: Priority: complaints; Outcomes: satisfaction, bereavement outcomes, how they're loved ones feel after they died.

Healthcare professionals: Intrinsic motivation: we all have intrinsic motivation for good communication. But it is difficult, especially breaking the bad news. Poor communication is related to burnout.     

Communication errors are related with culture. 

In the Netherlands there is a lot of focus on what the patient wants, the family comes second. Autonomy: discuss everything with the patient first, and then maybe the relatives.  Don't speak about the patient without his/her permission. Tell everything clearly and honestly. The patient decides, not the family. A lot of cultures are more family-centred. 

The stress-coping model of communication

It really about the 'need to know' (cognitive information) and the 'need to feel known' (affective empathy). 

Cultural differences in serious illness perceptions

Illness attributions: When facing serious illness, patients attribute these illnesses to several causes. Where you attribute the illness to, is dependent of the culture. 

Study among White British vs Black Caribbean MS patients in London. Two illness attributes: genetic/medical/environment vs supernatural. How people attribute their illness, could also change the information you have to give. 

The role of religion: religion can play a large role in illness perceptions. Islam: disease can be a divine test and only Allah knows and need to continue aggressive treatment. Christianity: only God knows. 

Knowing about these attributes/motivations is important to decide what patients need to know. 

Cultural differences in patients' need to know

Legal aspects 

WGBO (law): in NL doctors have the duty to inform patient as clearly as possible, if necessary, by using an interpreter. But also, the patient has the right to not know. Professional secrecy: is a patient's right: the patient decides with whom medical information can be shared.

Case study: Would you tell a 75 years old patient with cancer his life expectancy? Sweden: almost 100% would tell the patient. The Netherlands almost 90%. Belgium around 70% and Italy around 50%. 

Patients need for information

Patients need for information to satisfy their 'need to know'. However, need differ between patients and change over time. It is really about tailoring. 

Study Moroccan/Turkish attitudes about informing about diagnosis/prognosis. Systematic review by Graaff et al., 2012 looked at communication experiences/perceptions of Turkish and Moroccan patients with serious illness. These are the biggest groups in the NL 

Patients’ attitudes 

1. A subset of patients does not want to be informed, mainly elderly 

Turkish patients: 15-33% do not want to be informed about diagnosis/prognosis. Elderly patients do not want to be informed. Younger patients want to be informed but would not inform relatives. 

2. A subset of patients is indeed not informed 

16-63% of Turkish patients were uninformed. 33% of Moroccan patients were uninformed. Also, in the NL, not all Turkish/Moroccan patients are informed 

3. The manner of being informed is important 

The Dutch directness of information-provision is disliked 

Relatives’ attitudes

1. Family plays an important role in (not) informing patients 

Numbers: 39-66% of Turkish relatives did not want patients to be informed of a bad diagnosis/prognosis.  89% of Moroccan relatives informed (compared to 33% of patients) 

Reasons preference uninformed: upsetting nature, believing patients do not want to know, might hasten death, might stir gossip 

Clinicians’ attitudes 

1. Clinicians not always inclined to inform patients, depends on several factors 

Majority of Turkish oncologists (67-93%) thought that patients should be informed, many informed relatives (8-30%). Turkish physicians are more inclined to inform patients with higher SES/educational level. Trained and experienced clinicians more inclined to inform patients 

2. Dutch clinicians find it difficult to meet communication needs 

Due to e.g. patients’ lack of knowledge & cultural patterns

Conclusion attitudes: A subset of patients does not want to be informed (eg elderly) and are indeed not informed. Family can act as gatekeeper, due to several reasons (believing patients don't want to know). Clinicians not always inclined to inform (esp untrained/younger). Dutch clinicians struggle with how to inform. 

Family gatekeeping: sometimes the family determines what the patients’ needs to know, for example when the family needs to translate for the patient, they can decide which information they tell the patient. It falls under the rights of the patient to not know.  

To summarize so far: stress-coping model of communications helps explain communication needs in serious illness. Serious illness attributes influenced by culture. Patients have a need to know, which give legal difficulty: right tot (not) know and cultural norms influence communication. 

Explicit vs general prognostic information 

Patients' attitude: Most patients want to know everything, but 20-40% prefers to remain - partly - ignorant about their prognosis. 

Physicians' attitude: Reluctant to discuss time-frames. Often implicit discussion about prognosis and death, not often explicit wording used.

Preference explicit information: there is a lot of om ambiguity around what people want to know. Examples:

• "if a physician says 'Madam, in your situation, with your cancer cells and metastases we know that…'. It would be useless to hear that I will die between 1 and 10 years from now. That's not concrete enough, so they'd better say nothing then. If they say 'It's 3 years, give or take a year or two' … Yes, that is what I want to know."
• "If he says, 'there is nothing we can do', then I understand the message. You know, you know... Whether it will be 3 months, that matters of course, but he doesn't have to tell me that." 

Video-experiment of valid role-played videos in which explicitness of prognostic information was manipulated. Breast cancer patients/survivors (n=51) and healthy women (n=53) participating, of which n=17 ethnic minority. Put themselves in shoes of video-patient and judged communication. --> More explicit information was more preferred; it doesn't mean that all the patients prefer it.

Explicit prognostic disclosure in Asia non-disclosure and family-centred communication is typical in Asia. Little is known about effect explicit prognostic information in Japanese women. The same kind of results were found. Explicit information gives more satisfaction and takes away some anxiety.  

Clinical applications: Keep culture into consideration: ask patients and family about preferences. Be careful with prognosis, any objections with nearly all faiths (you can't take hope away, miracles can happen, a doctor doesn't know it all either). Hope for the best, prepare for the worst.  

Language barrier: the importance of a professional interpreter

Informal interpreter: often family member or friend, doesn't translate everything (shame). Is unable to translate medical words to own language. 

Formal interpreter: is independent, professional secrecy, can translate everything (except body language), by telephone or live. 

Language problems can impede joint decision making. 

Cultural differences in patient's need to feel known

What is empathy: feeling with people; I know what it is like, a connection can make something better. Never: "at least you had a son" (when the son died) or trying to put a silver lining around it. 

What is important in a clinician:

1. Immediate: Empathic responding to patient cues increases satisfaction, quality ratings
2. Short term: perceived empathy in bad news consultations increases satisfaction. 
3. Long term: reassurance and discussion of patients' feelings during a cancer diagnosis consultation, decreases anxiety up till 1 year. 

 Empathy can provide hope. Reassurance about non-abandonment specific form of hope. 

The broader effect of empathy 

Patients' memory is poor: 40-80% of the information is forgotten. Can affective communication recall? Suggested pathway: via decreasing physiological arousal. People remembered more in the affective condition. 

Non-verbal empathy

Importance and role of non-verbal communication might depend on culture. Non-verbal empathy might be more important in Eastern than Western cultures: more eye contact, less physical distance, clinician body oriented to patients, more smiling. Be aware, not all cultures appreciate eye-contact. 

Better effects in the 'high' conditions (more eye contact, more smiling). 

Patients' need to trust clinicians. Indications that immigrant patients have lower levels of trust. Is trust for immigrant patients more dependent on eye-contact, posture and smiling? Research found nothing. 

Japanese replication study: higher levels of eye-contact led to a higher rating of trust and compassion. Non-verbal communication was more appreciated. 

Clinical applications: empathy is important for patients. Verbal empathy (eg reassurance) can decrease stress, increase satisfaction and recall. Importance nonverbal empathy might depend on culture, but eye-contact, body posture and smiling seem to benefit most patients.

Summary

• Stress-coping model of communication helps explain communication needs in serious illness.
• Serious illness attributes influence by culture
• Patients' have a need to know and need to feel known (cross-culture)
• There are legal issues around the patients' need to know. Cultural differences in information needs and norms (family-centeredness), need to tailor explicitness (prognostic) information. 
• Verbal and non-verbal empathy can influence patient outcomes universally 

To conclude: Cultural attitudes/norms/needs need to be taken into account when communicating. But the need to know and feel known is universal. Ask patients and families about preferences.