Providing families of ICU patients with a list of questions does not improve their understanding of the patient’s situation
A study presented at this year’s ESICM LIVES meeting in Paris, and published in Intensive Care Medicine, shows that giving the relatives of patients a list of 21 commonly asked questions does not improve the relatives’ comprehension of their loved one’s situation, compared with relatives not given this list.
Relatives often lack important information about intensive care unit patients. High-quality information is crucial to help relatives overcome the considerable situational stress and to acquire the ability to participate in the decision-making process, most notably regarding the appropriate level of care.
The study, by Professor Elie Azoulay (Hôpital Saint‑Louis, ECSTRA Team, and INSERM, Paris Diderot, Sorbonne University, Paris, France) and colleagues, builds on a previous study by himself, Dr Vincent Peigne and colleagues which created the 21-question list based on input from patients, nurses and physicians. Having questions from several different sources offers opportunities to identify important questions that family members would have reported, without being able to recall them at the time of the survey because of their acute stress and their symptoms of anxiety and depression. The questions were spread across 9 categories: diagnosis, treatment, prognosis, comfort, interaction, communication, family, end of life, and post-intensive care unit management.
In this randomized, parallel‑group trial, relatives of mechanically ventilated patients were included from 14 hospitals belonging to the FAMIREA study group in France. The list of 21 questions was handed to the relatives immediately after randomisation. The primary endpoint was relatives’ comprehension of their loved one’s status/situation on day 5. Secondary endpoints were satisfaction (Critical Care Family Needs Inventory, CCFNI) and symptoms of anxiety and depression (Hospital Anxiety and Depression Scale, HADS).
Of the 394 randomized relatives, 302 underwent the day‑5 assessment of all outcomes. Day‑5 family comprehension was rated adequate in 68 (44.2%) and 75 (50.7%) intervention and control group relatives (P = 0.30), respectively. Over the first five ICU days, the median number of family–staff meetings/patient was 6; the median total meeting time was 72.5 min, and relatives asked a median of 20 questions including 11 from the list, with no between‑group difference. Satisfaction and anxiety/depression symptoms were not significantly different between groups.
Prof Azoulay says: “There are several reasons that this trial may not have improved comprehension and the other outcomes. First, the fact that the intervention had no effect may cast doubt on the validity of our specific list of questions or the approach of providing this list to relatives without additional guidance or support in using it. However, the list was composed of questions asked by a large sample of family members, who then evaluated how important these questions were to them. We did not assess whether and how the list of questions was used by the relatives atives. Indeed, the inefficacy of the list could be ascribed to failure of relatives to read and use the list. Conceivably, having a staff member or facilitator go through the questions with relatives might have produced a different result.”
He adds: “In addition, we did not assess the satisfaction of relatives with the list or the extent to which relatives felt the list was helpful. Qualitative interviews with relatives about the list might produce useful information to guide future interventions.”
He concludes: “relatives’ comprehension of the diagnosis, prognosis, and treatments of their critically ill family member is essential to effective shared decision-making and remains poor after decades of efforts to improve clinician–family communication in the ICU, suggesting that additional research is needed to identify methods to improve this comprehension. Having a facilitator use a list of common questions to help improve communication with relatives deserves evaluation.”
The list of 21 questions
- Why is he/she not fully conscious?
- What is wrong with him/her?
- I am upset by the way he/she looks. Can you tell me why he/she looks different?
- What treatments and other care is he/she receiving?
- When will he/she be able to breathe on his/her own?
- What is the purpose of the tubes and machines attached to him/her?
- What are the chances that he/she recovers?
- How and when will we know what is going to happen?
- Is he/she better today?
- Is he/she in psychological distress?
- Is there anything I can do to make him/her more comfortable? (music, newspaper, food)
- Is he/she in pain?
- Can he/she hear me when I speak to him/her?
- What can I do for him/her? (help with care, feeding, washing)
- Can I be sure I will be told if something happens?
- Will I be informed regularly of changes and, if so, how?
- Can I call to find out how he/she is doing?
- In a decision-making situation, what is expected of me?
- ow long will he/she stay in the ICU?
- Will he/she have any after-effects?
Further articles on this subject
1: Bodet-Contentin L, Gadrez P, Ehrmann S. Eye-tracking and speech-generating technology to improve communication with intubated intensive care unit patients: initial experience.Intensive Care Med. 2018 May;44(5):676-677. doi:10.1007/s00134-018-5093-0. Epub 2018 Mar 3. PubMed PMID: 29502253.
2: Benbenishty JS, Bülow HH. Intensive care medicine in 2050: multidisciplinary communication in-/outside ICU. Intensive Care Med. 2018 May;44(5):636-638. doi:10.1007/s00134-017-4915-9. Epub 2017 Sep 12. PubMed PMID: 28900688
3: IJssennagger CE, Ten Hoorn S, Girbes AR, Tuinman PR. A new speech enhancement device for critically ill patients with communication problems: a prospective feasibility study. Intensive Care Med. 2017 Mar;43(3):460-462. doi:10.1007/s00134-016-4629-4. Epub 2016 Nov 21. PubMed PMID: 27872950.
4: Mistraletti G, Umbrello M, Mantovani ES, Moroni B, Formenti P, Spanu P, AnaniaS, Andrighi E, Di Carlo A, Martinetti F, Vecchi I, Palo A, Pinna C, Russo R, Francesconi S, Valdambrini F, Ferretti E, Radeschi G, Bosco E, Malacarne P Iapichino G; http://www.intensiva.it Investigators. A family information brochure and dedicated website to improve the ICU experience for patients’ relatives: an Italian multicenter before-and-after study. Intensive Care Med. 2017 Jan;43(1):69-79. doi: 10.1007/s00134-016-4592-0. Epub 2016 Nov 9. PubMed PMID: 27830281.
5: Vincent JL, Shehabi Y, Walsh TS, Pandharipande PP, Ball JA, Spronk P, Longrois D, Strøm T, Conti G, Funk GC, Badenes R, Mantz J, Spies C, Takala J. Comfort and patient-centred care without excessive sedation: the eCASH concept. Intensive Care Med. 2016 Jun;42(6):962-71. doi: 10.1007/s00134-016-4297-4. Epub 2016 Apr 13. Review. PubMed PMID: 27075762; PubMed Central PMCID: PMC4846689.
6: Debaty G, Ageron FX, Minguet L, Courtiol G, Escallier C, Henniche A, Maignan M, Briot R, Carpentier F, Savary D, Labarere J, Danel V. More than half the families of mobile intensive care unit patients experience inadequate communication with physicians. Intensive Care Med. 2015 Jul;41(7):1291-8. doi:10.1007/s00134-015-3890-2. Epub 2015 Jun 11. PubMed PMID: 26077081.
7: Warrillow S, Farley KJ, Jones D. Ten practical strategies for effectivecommunication with relatives of ICU patients. Intensive Care Med. 2015 Dec;41(12):2173-6. doi: 10.1007/s00134-015-3815-0. Epub 2015 Apr 23. PubMed PMID:25904186.
8: Dorner L, Schwarzkopf D, Skupin H, Philipp S, Gugel K, Meissner W, Schuler S,Hartog CS. Teaching medical students to talk about death and dying in the ICU: feasibility of a peer-tutored workshop. Intensive Care Med. 2015 Jan;41(1):162-3.doi: 10.1007/s00134-014-3541-z. Epub 2014 Nov 12. PubMed PMID: 25387819.
9: Curtis JR, Sprung CL, Azoulay E. The importance of word choice in the care of critically ill patients and their families. Intensive Care Med. 2014 Apr;40(4):606-8. doi: 10.1007/s00134-013-3201-8. Epub 2014 Jan 18. PubMed PMID: 24441669.