by Carlo Bellieni, MD
During the COVID-19 pandemic, end-of-life decision criteria for dying patients were the focus of much discussion he course of the disease has led to the overload of ICU services in many places around the world, and those presenting to ICU with COVID-19 are the most severe cases and much more likely to die in ICU. Many discussions have been carried on about when withholding intensive care to people with severe COVID19 infections, and in particular which patients would receive the access to cures in the case of lack of sufficient tools for life-support.
Some have proposed to exclude from resuscitation elderly, others, disabled people, using criteria based on the quality of life remained to these patients if they survived. These are extreme proposals that in most cases have been refused. Nonetheless, it remains difficult to decide in cases of lack of resources. Usually two criteria are used for deciding on discontinuation of care for people who cannot be autonomous or who are unconscious: the Best Interest (BI) principle and the criterion of avoiding the Therapeutic Obstinacy (TO). The purpose of this post is to describe why both BI and TO are principles that are not satisfactory for making an end-of-life decision.
It is difficult to find in the literature a definition of what BI is: It is a vague principle. BI can be summarized as the realization of what a patient might want from medicine if they could ask for it. It is usually evaluated after an interview between the doctor and the patient’s legal surrogate. Some BI-based cases have recently attracted public attention, such as the British cases of children Charlie Gard and Alfie Evans.
TO is the unnecessary insistence with medical therapies. TO is similar to the concept of futility, but some differences should be pointed out, because the term obstinacy lies not only on a lack of good action (futility) but also the presence of bad action (obstinacy). For the purpose of this post, we can assimilate TO and futility. The online Encyclopedia for Palliative Care describes TO as: “The initiation or continuation of medical actions that have no other aim but to prolong the patient’s life when the patient is facing irreversible death.”. Avoiding TO is not always doing the patient’s BI. The first reason is because TO does not always contrast with the BI of the patient. An example is when we give useless therapies to an unconscious patient: providing them is obviously useless, but does not affect the interest of the patient who receives no harm from them. In this case, TO is not against the BI of the patient, but can give time to the family to cope and adjust. The second reason is because not all maneuvers that are against the patient’s BI are TO. For example, unnecessary and untreatable suffering is against the patient’s BI, even if it is not TO, which is defined as treatments that have no change of prolonging life.
We see this matter more clearly in what TO is called in languages other from English. In some languages the word obstinacy is substituted by “accanimento” (Italy), “encarnizamiento (Spain), or “encharnement” (France), with the same meaning: “fury, rage”, as these words came from the Latin “canis” (dog), and express the action of the dogs during hunt. We clearly see that in these cases the obstination is correlated to a harm and suffering provoked to the patient.
In English-speaking countries, TO is a synonym of futility and means to avoid useless therapies. This is not a problem from the ethical point of view since medicine proscribes absurd and useless practices. Thus TO would not be a matter of discussion in bioethics, but just in economics (for the wastes it produces). Moreover, if the TO is the supreme criteria to withhold end-of-life therapies, e.g. in the case of COVID-19 terminal patients, its limits would be evident, because some may want to receive useless treatments, and they would be in their right to request them, if they can afford them and if nobody else suffers from them receiving such therapies. What is to be proscribed is not a generic TO. First because TO is a misnomer (no real therapeutic treatment can be obstinate); second because TO is only an illogic waste of resources and not an ethically illicit act, something should be added to the concept of obstinacy to make the TO immoral. I suggest this missing criterion is “pain”.
When the uselessness or ineffectiveness of treatments cause unwanted and untreatable pain, there is a real threat to the patient’s BI. Without pain, discomfort, stress or suffering, we can speak of waste, uselessness, disproportion of care, but not of threat to the patient’s BI.
We should, however, highlight the limits of the BI principle: It deals with fulfilling a person’s wishes if he/she would speak. In everyday life, thought, it is easier to say what harms someone rather than what makes them happy. Moreover, the concept of “personal interest” is vague and subjective. This is why the principle of the “threat to the patient’s BI”, based on the measurement of pain, and suffering that we called “Pain Principle (PP)” is to be preferred to the BI principle, when decisions on end-of-life should be taken. In other words, we should shift from a subjective criterion (BI) to an objective one (the PP) to be allowed to suspend life sustaining treatments. Since it is easier to know what harms a patient rather that what is the best choice for them.
Pain, can be measured with laboratory tools available to the clinician. Today the pain and stress of the patients who cannot express themselves because they are in a coma or because they are infants, can be measured with electronic instruments, with the evaluation of the production of stress hormones and with multifactorial scales. Such measures include hormone changes, activation of the sympathetic system through the measurement of the variability of heart rate and of skin electrical conductance. We can consider this data a form of non-verbal communication from the patient unable to express themself and possibly a message of nontolerance of treatment.
When we decide on end-of-life issues, it is not sufficient to just look at the subjective and ambiguous BI of the patient. Instead, we should avoid what damages or hurts the patient. To this aim, it is important to evaluate the data and not the impressions, not to allow ourselves to judge what the patient “may” be feeling, since we have tools to measure their stress and pain level. It would be unacceptable to suspend life-saving treatment thinking that one is suffering while biological measures do not show a pain response. Similarly, it is atrocious to let someone suffer because we do not notice their discomfort. A corollary of the pain principle is that when intractable stress or pain is detected, the treatments that cause them should be changed or reduced in intensity, not with the aim of giving death, but in order to reduce the suffering they induce. Pain is subjective, but we have the tools to measure it; these tools are validated and broadly used.
Some might object that if we wait to withdraw life-sustaining treatments until pain is evident, watching a loved one or a patient dying may be hard to accept. However, this is not a patient’s but “spectators” problem, and the solution is not the suspension of care, hydration and nutrition, but environmental improvement and psychological support. Treatments should be withdrawn from the subject only when it is in the interest of the subject and an unconscious subject has no interest to the removal of treatments that do not harm them. They do have an interest in the removal of treatments which provoke them pain – unless the patient has previously explicated what their best interest would have been. If the treatment is useless (TO is for its definition useless for the patient) it should be withheld without hesitation. But we should avoid removing minimal vital supports not because they make the patient suffer, but because they provoke suffering to the bystanders, for the vision of a comatose patient, or in some cases from the prediction of a future disability.
I started this paper dealing with COVID 19 cases, because they are the emergency of this moment and they have made the discussion on end-of-life become a frontline matter in these days; and my conclusion is that if we have four ventilator and five patients in the same severe need of ventilation, with similar prognosis, the precedence should be given to those who suffer more without the ventilation. The criterion of avoiding futility is not helpful here (the ventilator is useful for all 5 patients) and BI principle is too vague.