The difficult task of decision-making in chronically ill patients: Why do intensivists dare while others do not?

Bara Ricou, Désirée Barrera, Géraldine Paratte

 

Why it can be generally difficult for physicians to make end-of-life decisions

End-of-life decision making is difficult, especially for patients with chronic disease, because throughout their progressive deterioration, physicians find it difficult to identify the end-stage moment leading to death [1], even though chronically ill patients less frequently receive palliative support despite a worse prognosis than patients with cancer [2].

The reasons for avoiding end-of-life decisions are various. Withholding treatments might not be seen as a possibility since it can be interpreted as abandonment. Many treatments can be seen either as part of palliative care or as useless, depending on the physician’s beliefs. Fear of legal implications can encourage physicians to pursue treatment. As in many other countries, in Switzerland, in 2013, an obligation for physicians to respect advance directives and the possibility for patients not deemed competent to be represented was introduced into the Civil Code. However, many physicians ignore the fact that this law does not imply that a patient or relative has the right to require a treatment considered not medically indicated. The fear of inducing suffering may impede physicians entering end-of-life discussions [3]. Furthermore, such an emotional burden may increase the risk of burnout of physicians [4].

What are specific factors that can prevent specialists from making end-of-life decisions?

General practitioners

General practitioners (GPs) know the medical history of the patient, especially for chronically ill patients. They are best placed to discuss advance care planning and determine the objectives of care, including possible limitations. This close proximity should facilitate end-of-life discussion, but GPs personal involvement, beliefs and loneliness may interfere. Recent studies showed that GPs feel insecure about starting such discussions because of lack of training [5] and fear of hurting the patient’s feelings [3]. Nevertheless, GPs often begin end-of-life discussions, but as the decision-making process needs time it may be interrupted by recurrent hospitalisations (table1).

Table 1: Overview of the items used by each analysed specialist for decision-making.
Items helping decision making	Physician’s specialty
General practitioner	Emergency physician	Hospital internal physician	Surgeon	Intensive care physician
Close relation	×		×	×
Trust	×			×
Advance care planning discussion	×		×		×
Life-threatening situation		×		×	×
Time	×		×	×	×
Shared decision making	(×)	×	×	×	×
Knowledge of long term outcome in ICU	×				×
Post-ICU syndrome	×				×
Patients’ psychological suffering					×
Relatives’ psychological suffering					×
ICU costs (time, money, logistic)					×
Achievable objectives	×	×	×	×	×
Moral obligation					×
ICU = intensive care unit

 

Emergency physicians

The emergency physician’s mission is to provide first-line care and stabilise the patient’s clinical state. In the emergency setting, the decision-making process is difficult because of lack of information about patients, including personal values and desires regarding the level of care. The lack of time for end-of-life discussion and emergency physicians’ ability to stabilise the clinical situation even in terminal diseases, in parallel with the difficulty of recognising the proximity of death may limit a palliative care approach.

Hospital internal physicians

Internal physicians aim at allowing patients to regain their pre-hospital quality of life. They can also discuss advance care planning. Respect for the work of colleagues before the hospitalisation and the fear of losing credibility with family members may prevent end-of-life discussions. Being a prisoner of previous decisions is a known ethical pitfall. The objectives of care should be continuously redirected to the best interest of the patient. Although internal physicians are better than intensive care physicians in predicting survival [6], they often lack knowledge of post-intensive care syndrome. Their vision should be shared with those of the intensive care physician.

Surgeons

Surgeons treat a specific acute problem. They may be reluctant to embrace the goals of end-of-life discussion as a result of their surgical training, cultural influences and ethical-clinical commitments unique to the surgeon-patient relationship [7].

Intensive care physicians

The intensive care unit (ICU) is the final step in the healthcare system. Intensive care physicians are expected to identify patients who will benefit from ICU treatment and, because of the costs this treatment, have the moral obligation to undertake end-of-life discussion in order to promote a fair allocation of resources. Intensive care physicians define with appropriate stakeholders the intensity of care; then an interdisciplinary team facilitates a shared decision-making process and reduces eccessive personal involvement [8].

End-of-life discussions are more frequent in ICU than in any other department. Life-sustaining therapy permits stabilisation of patients, and offers time for discussion and the formation of a close relationship with relatives. Intensive care physicians are conditioned by an awareness of the physical and psychological impact of ICU stays on patients and relatives, an impact that is poorly recognised by other specialists [9]. For families, the physical transformation of the patient, and alternation between hope and fear of sequelae or death can lead to posttraumatic stress disorder [10]. For the patient, ICU implies invasive and often painful treatment [11].

Conclusion

This article demonstrates the difficulties encountered by physicians in making end-of-life decisions and addresses possible solutions (fig. 1) The suffering of the patients and relatives associated with the awareness of the cost of ICU care imposes a moral obligation on intensive care physicians to undertake early end-of-life discussions. ICU admission is the last step in the healthcare system, which enhances intensivists’ sense of responsibility regarding its use. Treatment provided to chronically ill patients must respect not only the patient’s desires but should also consider the reality of their evolving disease. Any physician should be able stop treatments with unachievable objectives, provided that these objectives were sought at each step of disease. Various educational strategies could help to facilitate decision making by all physicians.

 

Figure 1. Proposals for improving end-of-life discussion at any stage of chronic disease (see references [12–15]).

 

Disclosure statement

No financial support and no other potential conflict of interest relevant to this article was reported.

 

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