The fact that most patients assisted at Intensive Care Units (ICU) are unable to communicate themselves makes their families the main speakers in the information process.1 There are multiple studies2–5 that say that the priorities of the families of critically ill patients are information and nearness with the patient and the medical team, being this need for information especially relevant for the families of patients who have passed away or are about to.6 Clear, easy to understand information is the key to go from that initial stage of confusion to a better control of the situation,7 understand the situation of the patient and promote implication during the decision-making process since information provides us with elements that make it easier to choose between this or that option.8

The information process to the families at the ICU can be better. This is what the scientific literature, both in Spain9,10 and worldwide8,11 tells us. Some studies tell us that the difficulties identified during the first decade of the 21st century are still not solved such as the lack of team work, the role of the nursing team that does not know what kind of information they can disclose, or the need for consensus on the contents of the information provided.12,13

These difficulties are very relevant and have a direct impact on the quality of the information process. At the Spanish ICUs, the doctor is the “official” spokesperson.14,15 Information is usually provided once a day15 and at a given time. In a high percentage of cases this information is whether not understood8 or misunderstood.16 Usually, this information is all about technical aspects and issues that the medical team considers relevant, and these aspects may coincide, or not, with the family's preferences or needs. So it comes as no surprise that the families have doubts afterwards and try to solve them with other resources such as asking the nursing team that does not really know what aspects they should really inform on.

In order to be able to solve all these difficulties, it is necessary that the medical team has a certain degree of consensus on what the content of information should be and how different professionals should handle it.17 In this sense, other authors have brought to light some of the questions usually asked by the families of critically ill patients.18 These studies are a good starting point in order to keep digging and specifying the contents of information that families demand. This project tries to contribute to this line of work by elaborating a catalog of informative requests prioritized by the families themselves that backs up the clinical practice. On the one hand, knowing these demands helps the medical team be able to structure the message that will be transmitted to the families, so it can be as meaningful and adequate as possible to them. On the other hand, knowing what professionals, according to the families, can respond to their informative demands will help us define the informative competences of the different professionals that participate in the healthcare process.

Thus, the following goals were set:

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  Define the main informative demands from the families of patients admitted to ICUs.

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  Explore the different perceptions of informative demands from families, doctors, and nurses.

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  Identify who are considered the most adequate professionals when it comes to satisfying each informative demand.

The study primary goal was to define the main informative demands from the families of patients admitted to ICUs. Based on the priority order given by them to the 82 questions of the final list, the 20 most important questions deal with the possibilities of survival, the expected progression of the patient, and the possible sequelae (1st, 2nd, 3rd, 7th, 9th, 10th, and 12th in the priority order), the need for information and the way information is handled (4th and 8th), the therapeutic plan (5th, 14th, 15th, 17th, 18th), the patient's well-being (6th, 11th, 13th, 19th, 20th) and family participation (16th). Table 1 (fully available through the additional electronic material [Annex 2]) shows the classification of questions based on the priority order given by the families according to the average score obtained and its association with the following columns that show the priority order given by nurses and doctors, and the type of informative demand each question refers to. When it comes to the study secondary goal (explore the different perceptions of informative demands from families, doctors, and nurses), and even though it is not exactly coincidental with the order of importance given by the families, 85% of the main 20 questions suggested by the families match the 20 most important questions suggested by the doctors, and with 75% of the main questions suggested by the nurses. When comparing the significance score given to every question, there are significant differences (p<0.05) between the scores given by families and doctors in 72 (87.8%) of the 82 questions of the list, being the downward difference the most common one. The same thing happens in 66 questions (80.5%) when the score given by families and nurses is brought to comparison. There are also differences in the assessments made by doctors and nurses, being these differences statistically significant in 53 (64.5%) of the 82 questions. Figure 1 of the additional material shows the importance given to each question by families, nurses, and doctors. The questions where there is a more significant divergence are shown in Table 2.

When analyzing the priority level attributed to different questions per group, there are significant differences in some cases when the opinion of the families was compared to the opinions of doctors and nurses. In this sense, a coincidental pattern between doctors and nurses was confirmed (Figure 2 of the additional material).

When it comes to the third goal (identify who are considered the most adequate professionals when it comes to satisfying each informative demand), overall, the option “both” was the leading one (54%) followed by “the doctor only” (28.2%) and “the nurse only” (17.8%). Differences can be seen if we take into consideration the opinions of the three groups that responded separately: families, nurses and doctors (Fig. 2).

Figure 2.

Professionals who saw themselves as capable of responding to each question based on the opinion of each participant group and overall.

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When analyzing the opinions of the families only (table of the additional material), most participants think that both doctors and nurses can be adequate professionals to answer 52 questions (63.4%). Most families think that it is the treating physician who should solve their doubts in 22 questions (26.8%), ant that it is the treating nurse who should answer 8 questions (9.8%). Of the 20 questions that the families think are the most important ones, they think that 10 of these questions should be answered by doctors, and the remaining 10 by both doctors and nurses alike.

One of the most common aspects in medical literature as a source of dissatisfaction for the families is the perception of poor or bad communication with the healthcare providers. There are important training deficiencies in healthcare providers when it comes to the communicative processes. As a consequence, communication with the families usually follows the models of the most veteran colleagues and is based on their own experiences and mistakes.21 On top of improving the how, it is also necessary to get to know what informative priorities the person who is going to receive such information has. This study shows that families prioritize survival, sequelae and the impact they have. They want to know how they are going to be informed, how will the patient's condition be controlled, how will the patient's well-being be guaranteed, and what options are on the table. As we go down in this hierarchy, the demands are more concrete like what is the therapeutic plan going to look like, what should the family do, or what devices are being used, among others.

The results presented here show that families and professionals perceive informative demands differently. This is why we should know how important different aspects are for the families and for professionals. On the one hand, professionals and families have different hierarchies when it comes to the informative priorities. There is more coincidence between doctors and nurses, and more differences between doctors and families. On the other hand, professionals gave low scores, that is, the questions were more important to families than professionals. This gap could be explained by the preoccupation and ignorance from the families of certain situations that healthcare providers live as daily routine and that, from the clinical point of view, are unimportant.

Lastly, we contributed to the debate of what questions do the families wish to be informed on by different professionals. The families think that a great deal of relevant questions can be answered by nurses or doctors alike (for the families, in 63% of the questions the answer on who should respond to the questions was “both”). Of all the questions they think should be answered by doctors or nurses, they think doctors should answer those that have to do with prognosis, sequelae, treatment, and diagnosis. On the other hand, they think nurses are better positioned to answer questions related to caregiving, sensations, setting, and rules, among other. In line with these results, the guidelines established by the Society of Critical Care Medicine on assisting families of critically ill patients17 say that information should be a team effort and recommend that information should be provided by both professionals alike. However, in practice, issues that have to do with legislation, the organization of services, training, and professional competence, and even, professional interests complicate the doctor-nurse process of providing information together.

For instance, in Spain the general rule of most ICUs is that it is only the treating physician who should inform the families, so he is usually alone when doing this, or else, doctors and nurses separately. In very few ICUs doctors and nurses provide information to the families together.14 The nurses usually do not know what kind of information the family has been provided with, so in order to avoid contradictions, they take a cautious role by providing brief and uncompromising information. Although there are initiatives that try to change this practice,22,23 nurses have always tried to not be there during the informative process24 and even justify that this informative process is not one of their responsibilities. It is not uncommon to find nurses downplaying information and denying communication with the families.16,25

A study like this one should be generalized being extremely cautious. When comparing our results to Peigne et al.’s,18 there is a coincidence in 9 of the 21 questions considered the most important ones. Although both studies have questions on prognosis, treatment and information, the French study also has questions on family involvement in the healthcare process or in the decision-making process. The origin of this mismatch can be the cultural differences of the populations surveyed or the different information policies of these two countries that should be taken into consideration.

Quality communication requires training and the collaborative effort of a team working adequately.26 We should assess how different institutions deal with these aspects, what are the tools that we using, and what stand do we take with one another. Also, what role do we play in communication with our colleagues, patients, and the families. Also, it is necessary to implement these recommendations in the reference and assess the results of such implementation.27

Matching the information and communication provided by the healthcare teams to the demands and needs from the families of critically ill patients will not only improve the perception they have of the healthcare that the patient is receiving but also help them face these difficult moments. One of the limitations of our study is that the answers were not assessed based on the clinical results obtained (survival). Future studies should analyze the differences between the opinion of the families of patients who survived and those who did not. This study did not take into consideration the different perception of attending physicians and residents. Thus, in future studies, it would be advisable to take into consideration all the possible differences in their respective contributions.

The most important questions for the families have to do with prognosis and severity, and the need for receiving information. Although healthcare providers think these questions are a priority too, they are usually less concerned about the preoccupations of the families and there is significant divergence in the priority of some of the concerns shown by the families.

Families think that most of their informative demands can be satisfied by doctors and nurses alike. This means that communication and consensus are needed between doctors and nurses in order to provide coherent and complete information, which is why we think it is essential to promote a change in the information policies by fostering doctor-patient information processes.

Therefore, it would be important to implement tools between nurses and doctors (training in communication techniques such as active hearing, help relationship) in order to improve our relation to the families.

The study promoter and leading researcher is José Manuel Velasco Bueno who was backed by the Research Team of the Humanizing Intensive Care (HUCI in Spanish) Project that fostered recruitment from the participant centers. Each and every one of the authors contributed to the study design, the reference search, the analysis of data and the discussion of results. All of them reviewed the manuscript in its different versions and approved the manuscript final version.

None declared.