During one of my postings in a small county hospital I found myself in the resuscitation room. A colleague had been trying for some time to understand how to tackle the cascade of problems harbored by an elderly patient: the monitor roars at 150 beats per minute, the pulse-oximeter shows 78%, despite the FiO2 1 of the high concentration mask; the patient, with a blank stare, the breathing strongly audible and the arterial tensions hardly captured. While the nurses are desperate to find a vein, to probe, to administer the prescribed corticosteroids and digoxin, to perform the electrocardiogram and to anticipate the next steps that the emergency doctor will order. Around her, another nurse points out, with great conscientiousness, what time it is and what procedure has been performed.
After interviewing the daughter of the patient for a few minutes and skim-reading the last admission report, I discover that Manuela is 90 years old and lives with her daughter, her main caregiver; she is suffering from highly evolved vascular cognitive impairment, being totally dependent for the basic activities of daily life and unable to communicate or obey simple commands. She has had recurrent urinary tract infections, dysphasia that requires her to ingest liquids with thickeners and has been hospitalized a couple of times in the last 6 months.
In an advanced chronic pathology with frequent exacerbations it is very difficult to know when the final moment arrives, the moment when it is appropriate to stop ‘fighting’ to keep a person alive who is actually in the process of death. This dilemma cannot be solved with scales, it is not identified with asterisks in the analytical reports and it is not discussed in emergency protocols. Being able to detect the time when the patient has the biological opportunity to die without prolonged agony is as important as knowing perfectly the treatments that can be effective in stabilizing the patient before us.
An emergency service is not a good place, a priori, for palliative care. However, despite the efforts of the health care system, patients often have to turn to the emergency room to relieve symptoms and distress that are often intolerable at home or in a home.
The challenge for a doctor, in these circumstances, especially when dementia has appeared, is to find out what the patients or their families understand to be the most beneficial option in their situation and not interfere with their options out of inertia of the doctors own reflexes, but only after having made a careful assessment of their true preferences. It’s not uncommon to see on the ward patients who have missed this ‘opportunity’ and have been stabilized with great effort — part of their suffering is difficult to disconnect from the clinical action — are then considered palliative for purely technical reasons: "No longer has venous access; there aren’t any more antibiotics that they tolerate; they don’t respond to furosemide..." without ever questioning if the patient wanted to confront their situation in this manner. However, the family, exhausted by now, lives in confusion and spends most of their time in the hospital, asking a thousand questions, despite being repeatedly told that "it’s not so much about how long the process lasts... but about how it’s perceived."
And at this point it’s necessary to consider whether all that has been done for the person, who we now know will die soon, was really necessary. Will clinicians only accept death in the face of treatment refractoriness? How conscious was the patient and/or his or her family that they were attending a crucial chapter in the death process? What responsibility do professionals have? Especially when, during admission in the emergency room, we don’t take a moment to analyze whether, when faced with a situation physiologically close to death, the most appropriate course is to initiate actions with a great deal of aggressiveness, which is what a resuscitation is. Such a resuscitation may be technically possible, but no one has stopped to ask whether it was desirable for the patient and his or her family. The family is accustomed to being overwhelmed by the situation. Many are afraid to recognize that the end has come, and for the professionals it is easier to start curative treatment than to initiate a conversation, however delicate, out of fear that someone may reproach them for insinuating that it may be best to let a person die.
Here we must re-focus. The question is not how much more could a person live, but rather how often will the patient, or his family, choose to carry on living. What must we do to respect their will and let nature take its course, given that end-of-life processes are counted in months, with progressive deterioration, allowing us to see destiny beyond even the ‘medical successes’, and where do we not want to end up?
To decide not to initiate curative measures is, a priori, neither correct nor incorrect. Either decision may be appropriate according to the patient's situation and what the patient and his family perceive as beneficial of the assistance received, in accordance with their expectations. Patients and their families are not aware that they can exercise their right to object to a curative treatment and will not be judged for doing so, and doctors, very often, are also not aware of this. Generally, we apply the ‘where there is life there is hope’ motto, forgetting that there is also suffering.
Doctors should be able to ask the family how many times we ought to put spokes in the wheels of a cart that is definitely going downhill. Because death is a natural process and reversing it is artificial.