The protection of the dying patient’s state of consciousness: analysis of invisible suffering

 

The protection of the dying patient’s state of consciousness: analysis of invisible suffering  

Davide Corvi  

Palliative care anesthesiologist  

Don Gnocchi Group  

Monza  

davidecorvi@gmail.com  

SUMMARY: Palliative care has the potential to eliminate all suffering for those diagnosed with an incurable disease. However, this potential is not always fully realized today. It can be observed that, in the final stages of palliative care, when the patient becomes unconscious, there may be latent suffering that is difficult to detect through traditional medical examination and is not always considered in the routine practice of palliative care professionals. The reason for this shortcoming is predominantly cultural. Current guidelines for terminal palliative sedation do not protect the dying patient from the risk of retaining wakeful consciousness in their final hours, likely because only a few palliative care professionals are aware of this issue, which involves complex scientific data that are not easy to analyze. An unresponsive patient may be awake without outwardly showing it, and this can cause severe psychophysical distress. There is an urgent need for the healthcare system to revise terminal sedation protocols to address these concerns.  

The primary goal of palliative medicine is to eliminate all possible suffering in patients diagnosed with a terminal illness, a goal that can fortunately be achieved satisfactorily today. The distress of these patients can be simplified, to some extent, into five aspects: physical pain, breathing difficulties, anxiety, depression, and fatigue. The term “depression,” used here in a broad sense and not strictly psychiatric, includes various components: those more related to fatigue and the inability to accept a more withdrawn life, and more spiritual components tied to feelings of sadness and a perceived lack of meaning. These latter components should never be overlooked by the physician and can be treated in many cases.  

There is also a category of suffering that, while somewhat included in the above, has its own specificity and complex characteristics and is often unfortunately neglected by palliative care physicians, sometimes due to inadequate training and other times due to differing philosophical approaches from the one proposed here: I will use the adjective “invisible” for this type of suffering. It can manifest in the final hours of a patient’s life when they are no longer able to speak or move, i.e., when they are unresponsive, having entered a coma of varying depths.  

Until that moment, the clinician’s work, though not always simple, has had a clear and unequivocal goal: ensuring the patient does not experience any of the symptoms listed above, verified through simple questions to the patient. Eliminating these symptoms is almost always possible with current medical resources, except for the symptom of fatigue. This is the positive news that palliative care offers to those with a serious illness: they truly will not suffer. Even depression can be treated to some extent (though the goal of seeing a patient energetic and joyful is generally, but not always, utopian).  

The issue becomes more complex when the patient can no longer communicate with the world.  

The literature (1, 2) still leaves many uncertainties about the external signs of suffering that can guide the clinician in terminal sedation for unresponsive patients: these signs are based on vital parameters, response to external stimuli, and physical manifestations such as tachypnea, tachycardia, tears, moans, facial grimaces, purposeless movements, or extreme muscle rigidity, all of which are incorporated into scores like the Patient Comfort Score, the Richmond Agitation Sedation Scale, and similar tools. When these phenomena appear, the clinician increases the level of sedation. But is it really sufficient to rely on these external signs of suffering? Many data suggest it is not.  

It is plausible to believe that altered blood circulation, low oxygenation, and extreme sarcopenia may paralyze the patient without halting brain activity.  

How can this activity be investigated?  

A simple tool is the Bispectral Index Monitor (Bis), commonly used in operating rooms because, according to some studies, it can detect patient awareness.  

Stepping briefly into the field of surgery, a person undergoing surgery, after being anesthetized, is sometimes deliberately paralyzed with curare (for various reasons, this is occasionally necessary) and thus cannot move or speak even if awake and wanting to. In rare cases, this has led to undetected patient awareness during surgery, as the anesthesiologist did not increase anesthetic drugs. This awareness was later identified because the patient recalled phrases heard during the operation and reported profound anxiety from the experience.  

To protect patients from these traumatic awakenings, anesthesiologists sometimes use the Bis, a portable electroencephalogram that should (the conditional is necessary, as there is no absolute certainty) ensure the absence of consciousness if it provides a number below 60 (simplifying: if the Bis number is above 60, the patient is awake; if below, they are unconscious; if it is 0, the electroencephalogram is flat, indicating extremely deep coma).  

These experiences and insights from my many years as an anesthesiologist in the operating room led me to reflect on the similarity between these dramatic cases and those of dying patients. Like anesthetized patients, dying patients often cannot speak or move due to severe circulatory impairments.  

Using the Bis, signs of possible wakeful consciousness have been detected in comatose dying patients (in their final hours or days) even when no obvious signs of distress were present (3, 4). For example, a febrile or desaturated patient might show no clear signs of pain or consciousness, such as tachypnea, facial grimaces, moans, or indirect signs like hypertension. Yet, even with high doses of sedatives and painkillers, high Bispectral Index numbers have been recorded, which do not definitively rule out patient awareness (8). The patient was “unresponsive” but not necessarily unconscious.  

Two important questions arise: first, whether a high Bis number is unequivocally a sign of wakeful consciousness, and second, whether awareness itself should be considered a symptom in the agonal phase and thus treated by deepening sedation.  

Barbato (3) notes that while there is a correlation between clinical assessment of sedation depth in dying patients and instrumental assessment with Bis, there are also more scattered Bis data suggesting discrepancies between clinical and numerical measurements. The same author points out that this does not indicate lower reliability of the Bis, as it does not measure exactly the same thing as clinical assessment and may detect hidden awareness and pain.  

For example, a significant case is reported where the Bis number increased after a phone rang, and another where it seemed to be the only early indication of pain that later manifested (a similar phenomenon occurred in a clinical case of ours, not documented, where the Bis anticipated clinical signs of suffering by many hours: the patient appeared well-sedated, and we could not explain the high Bis number, but later, despite very high sedative doses and the patient’s advanced age, pain grimaces appeared).  

While it is true that the validity of this measurement can never be confirmed, as it is impossible to ask a deceased patient posthumously if they were awake in their final hours, prudence suggests considering these anecdotes when dosing terminal sedation. In other words, it is better to err on the side of eliminating potential suffering, especially since the patient is undoubtedly dying (all considerations in this article apply only if the clinician has made a certain diagnosis of irreversible coma and the dying process, as we will see later; otherwise, the discussion becomes more complex). It is better not to risk invisible pain or distress, perhaps due to an unfounded fear of “over-sedating.”  

Sam Parnia has shown that even in extreme conditions like cardiac arrest during resuscitation, brain function can remain non-minimal, with electroencephalograms showing delta, theta, and alpha waves (5).  

Thus, to the first question, the answer is that it is not necessary to have mathematical certainty of patient awareness to rely on the only tools currently available. As for other possible monitoring methods, none provide guarantees: for instance, not only is performing a full electroencephalogram on all patients technically challenging (especially at home), but it would not definitively resolve the issue of consciousness.  

Clinicians who follow this reasoning and wish to test it by monitoring their patients with Bis will notice that the usual drugs used for terminal sedation (morphine and midazolam) are often inadequate to achieve the desired depth of sedation. Sometimes, propofol, a drug with which palliative care professionals are unfortunately less familiar, is much faster and more effective in abolishing or reducing consciousness.  

The second question is more nuanced because measuring patient awareness does not inherently imply that this awareness is associated with physical or psychological suffering. In fact, referring to the only documented literature on experiences reported by patients in extreme vital parameter alterations (near-death experiences, NDEs (6)), there are anecdotes of beautiful emotional experiences. However, the literature also describes terrifying or “hellish” NDEs (7).  

The same prudential consideration applies here: in my opinion, it is more important to protect against suffering than to ensure the possibility of hypothetical blissful experiences. Put another way, it is not right to subject someone to “hell” to guarantee others a “paradise,” which is, moreover, hypothetical and unproven.  

Furthermore, it is not certain that the only experiences a patient has in those moments are NDEs, whether blissful or terrifying. They could simply be painful or distressing experiences without dissociation from shared external reality. Additionally, to be philosophically rigorous (though this observation is not strictly relevant to this article), abolishing brain activity would only definitively eliminate NDEs if one adheres to a reductionist paradigm of consciousness, where all mental activity is attributed to cerebral electrical activity.  

Another way to frame the issue is as follows: if the patient is happy in their final hours, a sedative bolus to abolish consciousness would cause no pain (instantaneous sleep). If they are unhappy, the bolus would be highly beneficial. In any case, no harm would be done.  

It is true that high Bis numbers may sometimes result from electrical alterations due to neuronal damage: essentially, the damage to brain cells caused by the dying process can generate electrical currents that do not imply actual cell function. However, this does not explain the clinical cases mentioned above.  

Having established that the patient might (and here the conditional suffices!) be awake and aware in their final hours, if one agrees, based on the arguments provided, on the appropriateness of abolishing such awareness, the need arises to discuss and develop valid decision-making algorithms to protect the dying patient from wakeful consciousness.  

The first consideration is that palliative care units currently do not have access to Bispectral Index equipment, both for economic and cultural reasons (given the still limited dissemination of the arguments above among professionals and some resistance to addressing issues that would require a radical change in established practices). The second consideration concerns current legislation, which allows the administration of sedatives and opioids only in the presence of clear symptoms: how can an increase in sedation be justified in the complete absence of pain signs, based solely on a well-founded suspicion?  

Before listing possible solutions, it is necessary to address the issue of diagnosing imminent death, as the arguments presented here are valid only if we are certain that the patient is indeed dying in the short term.  

In the literature, there is no index that allows us to be certain of imminent death (there are indices that suggest it with good probability, but this is not sufficient from an ethical standpoint for the purposes outlined). To proceed with an increase in sedation, we must be 100% certain, or at least as certain as humanly possible. How do we resolve this impasse? Let’s start by defining the type of patient for whom we are considering this increase in sedation.  

We can observe that there does not appear to be, in all the global literature, a single documented clinical case of a patient who regained contactability while simultaneously presenting for several hours these three conditions: severe desaturation (SpO2 < 70%) [or severe hypotension (BP < 60)], uncontactability, and diffuse metastases. Nor is there a reported case of a patient in similar conditions surviving for more than a month.  

A small personal investigation led me to identify a case (reported orally) that occurred to a colleague, where a patient in similar conditions (assuming the parameters were accurately measured) woke up and remained asymptomatic for a short period, only to die two days later.  

A national survey among palliative care specialists could be conducted to determine whether they have encountered cases of awakening or prolonged survival in such conditions. If desired, a study on predictability could also be carried out. Should all these investigations confirm this reality (though perhaps an expert panel might suffice to make a decision in this regard), it would be ethical to consider that these three conditions, combined with a diagnosis of a disease with an already poor prognosis, could justify the deliberate abolition of any residual conscious awareness, out of concern that it may be a source of physical or existential pain. Prudentially even stricter conditions could be established, with even more compromised vital parameters.  

The debate I aim to spark does not seek to force clinicians to decide one way or another, as in such situations, the sensitivity of the operator and the patient’s history play a significant role: it is not simple, nor perhaps advisable, to establish a universal intervention protocol for such cases.  

My intent is not to provide monolithic solutions but to stimulate debate on this topic as much as possible and ensure that the law allows palliative care specialists to increase sedation even in the absence of overt signs of suffering.  

In my view, the possible decisions, once this debate has taken place, are as follows:  

1. Amend the law to make it possible, in cases of extremely advanced terminal conditions such as those described, with profound alterations in vital parameters, to administer a very generous bolus of sedative—preferably one more potent than midazolam or morphine, such as propofol—without fear that it might stop breathing.  

   Possible objection: This would amount to a form of euthanasia.  

   Response: As illustrated, death is already occurring with or without our intervention. It should be considered that sometimes it is precisely our choice to leave patients in such conditions of prolonged agony that leads family members, who have witnessed such scenes, to later desire euthanasia for themselves. Palliative care, to be a true alternative to euthanasia, should guarantee protection from all suffering, including that which is invisible.  

2. Use a BIS (Bispectral Index) monitor for every dying patient and adjust sedation based on BIS values. This option is unfortunately burdened by high costs, but it may become feasible in the future (as demand increases, costs could decrease).  

3. Rely solely on advance directives (DAT), encouraging public opinion to ensure that everyone specifies whether, in the case of coma and terminal illness, they prefer sedation according to current protocols (which carry the risk of invisible suffering) or more “generous” boluses of medication.  

   Drawbacks: For many years, we will still have elderly individuals who are unaware of what advance directives are. Moreover, a discussion as complex as the one outlined here is difficult for individuals with limited cognitive or cultural capacity to understand: how can we expect advance directives to be completed with full awareness of the phenomena described and with informed reasoning? And how should we proceed with patients who have not left advance directives? In any case, even this type of directive would require a change in the law.  

It can be inferred that point 1 is perhaps the most feasible and reasonable in the short term.  

However, it clashes with the emotions and perhaps some religious or secular beliefs of healthcare providers. Let’s examine them one by one:  

- The provider feels intense resistance to the idea of administering a bolus that is potentially (or almost certainly) lethal. This stance should prompt reflection on whether the physician’s focus is entirely on the patient’s well-being or rather on themselves and their actions, with all the symbolic implications that follow. The provider should consider that the patient is already dying, and their action only involves a compassionate reduction of agony, not a deprivation of a life that is humanly acceptable. Naturally, such a procedure should only be carried out with the full agreement of the family, and the provider can always choose not to perform this action if they remain convinced, for various reasons, that the patient is not suffering and prefer to respect the natural course of events. In essence, the provider would not be forced to choose one way, but would simply be given the legal possibility to do so.  

- The provider with theistic religious beliefs holds that only God should decide the duration of a life. The response is the same: such a life has already ended; there is no shortening of the patient’s human experiences, only a reduction of the pain of a dying body.  

- The provider has no desire to improve their practice because such suffering is invisible, and no one will ever hold them accountable for failing to alleviate suffering that no one sees or will ever see. I sincerely hope that no provider holds such an egoistic view of their work.  

An additional consideration: all palliative care specialists have experienced cases where a terminally ill patient on continuous morphine infusion requires additional sedative boluses due to disturbed and suffering awakenings. All such awakenings, if the suggestions in this article were followed, could be reduced or eliminated.  

CONCLUSIONS: The clinical management of a patient’s final hours requires urgent scientific and legislative deepening to ensure the complete absence of psychophysical symptoms in the patient. The possibility that the patient may be suffering without outwardly manifesting it must be taken into account. Therefore, it is appropriate to make decisions and develop protocols that allow us to perfect our accompaniment to death, considering the “invisible” suffering described. These demands are now ethically unavoidable.  

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