Management of decision of withholding and withdrawing life-sustaining treatments in French EDs

Deaths are often preceded by a decision of withholding or withdrawing life sustaining-treatments in emergency departments (ED) and mainly concerns patients over 80 years old with chronic underlying diseases, metastatic cancer or previous functional limitations [1‐4]. Previous studies have shown that decisions of withholding and withdrawing life-sustaining treatments involved this patient profile in 80% of case [2, 3]. The decision making process to withhold or withdraw life-sustaining treatments has been examined at length within intensive care units (ICU) worldwide, but limited data exists in the ED setting [5‐7].

Given the nature of the ED context, time management and chaotic work environment contribute greatly to the care a patient receives. Additionally, with limited data available concerning the patient’s state of health, information about previous functional limitations, and chronic diseases can be limited or absent entirely [8, 9]. Most of these patients are unable to communicate or practice autonomy and moreover there is a lack of advanced directives [10]. Ethics must be respected in this context, including but not limited to the principle of beneficence and non-malfeasance [11]. Thus, families are often asked to participate in the decisions about withdrawing or withholding life-sustaining treatments [2, 3]. There is a balance between medical and ethical consideration and also legal aspect which varies between countries. Guidelines have been established for the management of these decisions such as the involvement of relatives or the need for a collegial procedure, but there is limited data regarding the management of these decisions in the context of the ED [12‐16] and the gap between real practice and guideline.

A previous study showed that physicians who were continually expected to determine the fate of patients receiving life-sustaining treatments reported a lack of professional emotional support in this process [17]. These situations could lead to emotional or psychological burnout and decreased job satisfaction [18]. Moreover, it has been demonstrated that communication and shared decision-making were key aspects relating to the transition from active treatment to end-of-life care [19].

For these reasons, we aimed to observe real practice in an ED French network, and the staff members feeling about decisions of withholding or withdrawing life-sustaining treatments.

We had a twofold goal:

The management of the decision of withholding and withdrawing life-sustaining treatments in ED did not follow the recommendations of the guidelines and need to be improved. Our results strongly suggest there is a benefice of a procedure for improving the collegiality and the traceability. It enhances the communication between the staff members, the patient and the relatives, and the management of pain and comfort care. We also observed that a written procedure did not improve the experience of the staff members in these situations.

Few studies have focused on decisions to withhold or withdraw life-sustaining treatments but it appears in literature that it is a subject which concerns every ED in Europe and the USA [1, 8, 9, 22]. Moreover these decisions require taking into account the medical, ethical and legal aspect [23] and it is a challenge for the emergency staff. Our study is the first multicenter study to evaluate the management of these decisions with predefined criteria.

Our study has some limitations. Firstly, part one of the study is a retrospective study. It is possible that data could be missing from the medical records, especially concerning the collegiality of the decision-making process or the support for relatives. Some practices may be carried out but not written in medical records and underestimate the quality of practices. Moreover, as we didn’t planned an adjudication committee to select the medical records, it could have selection bias. However, the standardization of the selection method may partly have limited the inter-observer variability. Secondly, some of the 46.8% of ED deaths that did not document withholding or withdrawing care may have been futile cases and those discussions may have taken place but were not documented in a way that the chart review picked up on these cases. We found also a low ED mortality (0,15%) compared to USA (0.3%) but similar of another study in France (0.1–0.2%) [16] One explanation could be the specificity of France with the MICU which transfer the most critical patients directly from scene to ICU. Moreover, we didn’t included patients who had care withdrawn or withheld who did not die in the ED. Patients very well might have excellent end-of-life care, involving many of the 15 principles, and care may have been withheld or withdrawn, and the patient may have died out of the ED or emergency observation units. This point explain also the fact that we included 2–3 patients/months at each hospital which is similar with another study [3] but these results contrast with the survey answers. Staff members could be confronted with these decisions for patients who didn’t die in ED. These are good argument for the next study to have prospectively collected information.

Third, the criteria used to assess quality of care in the setting of withdrawal and withholding of treatment in French EDs have been published previously with legal standards for withdrawal and withholding of care in France which makes the practice environment there unique. One of the strengths of our retrospective study is that we do not observe the Hawthorne effect in which individuals modify an aspect of their behavior in response to their awareness of being observed [24].

Finally, we obtained a low response rate in the survey. In a precedent study on the same subject, we had a response rate of 59.4% from the physicians [17]. If we consider the response rate of the paramedical staff, it is lower than the physicians because the ratio nurse-nurse’s aide/physicians is 1.5. We can hypothesize that the paramedical team are uncomfortable on this topic and maybe the nurse’s aide feel less concerned. A qualitative study could be interesting to explore the barriers.

Our results strongly suggest a written procedure for assisting the collegial discussion between the medical and paramedical staff improves communication and quality of care and traceability. This is a key point considering the involvement of the nursing staff was insufficient during the decision-making process [2, 3, 17]. Despite international recommendations that have emphasized the need for collegial decision-taking and particularly the involvement of nurses this remains insufficient [12‐17]. The poor implication of the GP in these decisions has been shown previously and more generally the lack of communication between GP and hospital [3, 25, 26]. The context of ED with the lack of time, the overcrowding and the absence of standardized ratio nurse/patients are obstacles to the decision-making process. Because of the legal aspects, these decisions required a good traceability to be in compliance with the law of each country and guidelines recommend that all discussions about end of life care decisions must be documented [12‐16].

The improvement of the management of pain and comfort care with a procedure is also an important point for clinical practice. Previous studies have shown that palliative care are insufficient for patients who died in ED after a decision to withhold or withdraw life-support therapies and was administered to about half of them [27]. It has been demonstrated that an ED-based palliative care (PC provided directly in the ED) improve quality of life if palliative care was introduced early [28]. A qualitative study identified barriers to integrating palliative care in ED and showed the necessity to improve communication, as well as documentation about goals of care and symptom management [29].

Another primary point is the improvement of the communication between the teams and the patient and the relatives in our study. Both medical and paramedical face different challenges. Physicians have difficulty during the announcement whereas communicating with the family is more difficult for the paramedical staff. Moreover, physicians are more implicated the legal aspect than the paramedical. There is minimal literature concerning the end-of-life communication with relatives in ED [3]. In intensive care, it has been demonstrated that physicians lacked proper training for the skills required to communicate with patients, patient’s families and physician’s colleagues, including communication of futility [30]. Moreover, a poor communication between physicians and relatives could lead to complicated grief after death of a loved one in the intensive care units [30]. A brochure on bereavement and the use of a proactive communication strategy could lessen the effects of bereavement [31]. The need for adequate communication between family and staff members but also the need for communication training for teams has been demonstrated [32]. The debriefing piece could be an easy cost solution to improving how providers feel after taking care of patients at the end life.

Given the lack of consistency regarding life-sustaining practices, a procedural template which meets standardized international regulations (a checklist, for example), could be largely beneficial for staff members involved in the decision-making process. However some criteria in our study are not generable and specific for France like the involvement of an external medical consultant to the collegial discussion. This checklist should take into account the specificities of each country. A few studies have focused on the benefice of a written procedure in these situations. Sedillot et al. showed that a five-step protocol improved collaboration in the decision-making process and the transmission of information between staff and families [33].

While a written procedure can improve the decision-making process, some aspects remain difficult for the staff members. Indeed, the procedure alone made no difference in the survey results of the staff in their comfort level of both the management, making the announcement, and communicating with relatives. It is a compelling argument that written procedures are only part of the solution to improving end of life care in the ED, but that these procedures must also be combined with educational programming for the providers who are caring for these patients. Several ways for improvement are possible such as the skill communication training and further studies are needed to explore how to improve this point.

The management of the decision of withholding and withdrawing life-sustaining treatment in emergency departments must be improved according to the international guidelines. A written and standardized procedure for ED could be helpful for homogenize clinical practice despite the lack of difference as experienced by the staff concerning the announcement and the communication with the relatives in these decisions. Communication training on the end-of-life issue could improve the experiences of the staff members as well as simulation-based training.