Inequalities
→Access to good care
→Assessment and treatment of symptoms
→Inadequate information
→Psychological distress
Need to know
Cognitive information
Need to feel known
Affective empathy
Patient client communication in progressive diseases
Need to know and need to feel known
Lancet commission on the value of death
Essential conversations about sharing honest information should be a right for all people and families who wish it
Incurable treatment aim
Look up in notes
Legal aspects right to know
WGBO
• Doctor has the duty to inform patient as clearly as possible, if necessary by using an interpreter (art 7: 448)
• Patient has the right not to know (art 7:449)
Incurability discussed
First consultation > 80%
Second consultation > 35%
What we often see in clinical practice is that as a coping mechanism people say “I hear you [that the disease is incurable, red], but I don’t want to accept it yet (…). So I’ll say (…) you need to know this to make well-informed decisions, but we don’t need to keep discussing that you’re dying
Turkish/Moroccan attitudes about informing about diagnosis/prognosis
communication experiences/perceptions of Turkish and Moroccan patients with serious illness. These are the biggest groups in the NL
1. Patients’ attitude
2. Relatives’ attitude
3. Clinicians’ attitude
Patients attitudes
- 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 are 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
- The manner of being informed is important
• The Dutch directness of information-provision is disliked
Relative’s attitudes
- Family plays an important role in (not) informing patients
• 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 relatives prefere being uninformed
• upsetting nature
• believing patients do not want to know • might hasten death
• might stir gossip
Clinicians’ attitude
- 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 more inclined to inform patients with higher SES/educational level
• Trained and experienced clinicians more inclined to inform patients - 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 (e.g. eldery) 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
Low explicitness
See notes
High explicitness
See notes
Some ethnic minority patients wish ‘to not know’
But when he says ‘Ok, some people will cure’, he is allowed to lie about that. Especially when the doctor sees that the situation of the disease is so serious. I knew for example about the seriousness of my fathers’ illness (…) But still we kept giving him hope. “You will get better, it it just an infection”. Because we personally knew how he would respond.
He is always afraid of cancer
Explicit prognostic disclosure in Asia
• None-disclosure and family-centered communication is typical in Asia • Little is known about effect explicit prognostic information in Japanese
women
Results: Explicit prognostic disclosure in Asia
See notes
Clinical applications need to know
• Keep culture into consideration
- Ask patients and family about preferences
• Be careful with prognosis • any objections with nearly all faiths - ‘Miracles can happen’
• Hope for the best, prepare for the worst
Language barrier: Interpreter
Vb. hospitals left many covid patients who don’t speak English alone, confused and without proper care
Empathy
Sympathy: oh poor you (Bug logged)
Empathy: I understand what you are feeling (ACG Bug is replaceable.
Compassion: i am motivated to help (let’s fix this)
Against empathy
Clinicians demonstrate less empathy, e.g. social talk, with ethnic minority patients
Lower Socio Economic Status & Non- white groups (nonsignificant) experience lower empathy
Reassurance
See notes
