Dr. Vergano: "So far, so good" - Ethical Decisions at the End of Life

Scientists define the term "end of life" in different ways. For some, a person is considered to be dying if they have a life expectancy of less than six months as a result of a confirmed diagnosis and an adverse prognosis. For others, a dying person is someone who has a much shorter life expectancy, in the range of a few hours or days.

Aside from the timespan, which can be hours, days, or weeks, the end of life is to be understood intuitively: It refers to the last stage of life of a person suffering from an advanced, incurable disease or a condition in which the prognosis worsens and eventually leads to death.

In your experience, do all physicians perceive the end of life similarly?

In my opinion, this differs from physician to physician. Since every specialist works in a different field, they have different experiences based on that too. Some rarely have to deal with a person's end of life due to their specialty. Others work in a field where the end of life is much more present. Consequently, there are definitely differences in perception, which in turn result from everyone’s different professional backgrounds. Oncologists and resuscitation physicians often have to deal with their patients' end of life, but surely their perception is different.

What does the end of life mean for people like you who work in an ICU?

The condition of most patients in the ICU is very critical and the treatment outcome is often uncertain. Some have better prospects of a recovery, while others have dimmer prospects, but they all are in a potentially life-threatening situation. Intensive care medicine supports all vital functions with the available resources and tries to prevent organ failure.

Unlike other specialties, however, time is much more limited for us. Our patients stay in the hospital for only a few days, rarely longer than two weeks. If a cancer patient's therapy fails and the disease progresses, the patient will be monitored for weeks or months on their path to the end of life. By contrast, an intensive care patient in critical condition who does not respond to treatment and whose vital functions can no longer be maintained artificially, has a very short life expectancy. At most, we are talking about a few hours, or a few days.

Patients on the "conveyor belt"

Do divergent ideas about the end of life among specialists also result in problems for treating patients?

The situation is certainly complex, with multiple factors at play. But it is not uncommon that, when faced with a frail 95-year-old patient with an acute episode, chronic comorbidities, and limited functional status, there are voices who want to invest all resources in treating this patient; and at the same time, there are those who would rather offer terminal care instead. Many colleagues surely have the image of the resuscitation assistant in their minds, holding back other specialists who demand access to intensive care for a patient. But sometimes it is the intensivists themselves who do not use the resources of intensive care appropriately.

We need to spend much more time talking about the need for care, the adequacy of interventions, and quality of life. In recent years, one analogy has repeatedly appeared in the medical literature in this context: A patient on a conveyor belt moves along a prescribed path without any interruption¹. I just mentioned the 95-year-old patient who arrives at the ER after a stroke, pneumonia or some other acute problem. There, he or she is put on the conveyor belt that takes them through blood tests, imaging procedures, various consultations and so on, all the way to the ICU or perhaps even the operating room. All this happens automatically, without anyone thinking about the extent to which the procedure is reasonable and appropriate for this patient and whether all resources should be mobilised. What about the patient's quality of life after undergoing extensive diagnostic and therapeutic treatment? Sometimes the inappropriate ICU stay of a dying patient only prolongs an agonizing course of suffering by applying measures that are out of proportion to the nearing end of life. It is difficult to escape from this conveyor belt. Many times, it becomes clear only a few days later that someone won't survive intensive care or surgery. Rather too late, we realize that we only unnecessarily delayed his or her end of life and that we probably did the patient no good.

As physicians, we should learn to pause and ask ourselves the question: What is best for the patient? This question must be discussed among the various medical specialists in a collegial manner, without putting all the responsibility in the hands of just one. If possible, we should also discuss things with the patient or their relatives. In addition to imperative intensive therapy, other options may arise altogether. For some, starting palliative care may be the better course, while others may prefer to set a stress limit beyond which continuation of treatment is out of the question.

How can physicians improve their approach to the end of life?

Things are already moving forward. Today, we observe encouraging trends compared to previous years. Much of the +work needs to be done in the areas of education, communication and exchange of experience. In an ideal world, the various medical associations, scientific societies and academia would work together to establish a shared vision for dealing with the end of life. We need to find a consistent path and create space for community moments in which the diverse professionals can share their decisions and reflections on the appropriateness of treatments. The situation in Italy today is by no means homogeneous.

In 2013, SIAARTI (Società Italiana di Anestesia Analgesia Rianimazione e Terapia Intensiva: Italian Society of Anesthesia, Analgesia, Resuscitation and Intensive Care) collaborated with other scientific societies to publish a document with the title "Grandi insufficienze d'organo end stage" (Eng.: Severe organ failure in the end stage). This interdisciplinary document involved physicians and nurses, emergency physicians, nephrologists, cardiologists, and general practitioners. It describes decision-making procedures that some hospitals have already incorporated into their processes. The paper was a first attempt to gather a number of experts and jointly explain that, in the case of a person with organ failure and little chance of recovery, one should ask prior to therapy whether it is absolutely necessary to proceed with it just because it is available, or whether the person may be at the end of his or her life and therefore another option would be more appropriate.

Not delegating, but making difficult decisions together

Where resources are available, their adequate use is important. When they’re not available, they become indispensable, as was the case in Italy at the end of February 2020, in view of the spread of the SARS-CoV-2 virus. At that time, SIAARTI published a document² regarding Clinical Ethical Recommendations for the Initiation and Discontinuation of Intensive Care in Exceptional Circumstances, in Case of Imbalance between Needs and Available Resources). The paper was picked up by the mainstream media and generated a great deal of attention and criticism aimed at the physicians. You were one of the editors of the article. What do you think prompted such public outrage?

The SIAARTI recommendations of March 2020³have been heavily instrumentalized in Italy, especially on the political level. In other areas, they were perceived quite differently. At the international level and in scientific circles, they found general approval and were underpinned by comparable experiences.

The paper did not contain any new information. It has been known for years that in the event of a severe disaster, where there is an imbalance between the resources needed and those actually available, exceptional criteria must be applied.

The criteria could already be found in the medical literature, in various articles on disaster medicine that talk about triage and resource allocation in emergency situations. The Italian Code of Medical Ethics also addresses this issue in relation to military medicine⁴.

Arguably, the massive media response was due to the fact that no one had expected such measures to be necessary in a Western industrialized country such as ours. This document made many people aware that the resources were insufficient and that the valuable intensive care resources would have to be well allocated.

As an ICU physician, this is an everyday problem. The demand for beds on the ward is always greater than the available capacity. Of course, the limit depends on the resources and the pressure that is put on the system.

It seems that society and healthcare have forgotten that death is a natural part of life. And this applies not only to extraordinary events such as the outbreak of the COVID-19 pandemic, but also to normal everyday life. Apparently, many physicians don't want to take on the responsibility when they realize that a patient is nearing the end of their life. What factors might influence this attitude?

It is only human in a difficult situation to want to delegate responsibility. Seeing their colleagues write in the medical record that there is no indication for resuscitation means for some physicians that they don't have to bear the burden of the decision alone; even if they are aware that their patient has no chance of survival. For some, this mindset certainly means that they can abdicate their responsibility. However, I believe that the majority of colleagues are more likely to appreciate the opportunity for shared responsibility. Albeit this is probably not the best approach to such a problem.

A number of factors come together on this. First, many physicians lack specific curricular training in end-of-life issues. Many physicians simply do not know how to break sad news to a patient because no one taught them. Communication skills are still viewed as a personal asset rather than a skill to be acquired and nurtured. Fortunately, many faculties now have dedicated courses to address this deficit. This means that in the future we will have physicians who can not only provide respiratory care or treat a septic shock, but who also possess the ability to deliver the message to patients or their families that there is no cure for their condition and that there are no more effective treatment options.

We also need to mention the concept of defensive medicine. When colleagues fear lawsuits, this may well lead to resuscitation measures and unreasonable therapies being carried out unjustly. But again, one cannot make sweeping generalizations. Certain regional differences result from sociocultural aspects. For example, in the south of Italy, there is generally a greater distrust of the healthcare system. For this reason, many families are more inclined to demand, even with threatening insistence, that all available treatment options be exhausted. There is a great deal of mistrust. People fear that physicians wouldn't do everything in their power without some kind of pressure. Against this background, physicians naturally tend to delegate decisions to others as much as possible.

And then there are those who don't want to take responsibility and never leave their comfort zone. These physicians also exist.

Would a score-based algorithm help physicians make difficult end-of-life decisions?

Decision-oriented methods based on point systems are already out there, and some of them have even been approved. Some are useful, others less so. Those scoring systems were already called for by physicians during the COVID-19 pandemic, especially during the first and second waves in order to help make treatment decisions and figure out which path to take. The Charlson Comorbidity Index, the SOFA score, did come into use, but didn't prove very useful for assessing the severity of COVID-19 and predicting mortality risk.

Point systems are a useful tool because they provide more objectivity in the conversation, but they cannot replace medical decision-making processes. Whether or not to admit a patient to the ICU, whether to discontinue or continue treatment: these are not decisions that can be handed over to a decision-making algorithm or an automated system.

Speaking with physicians and patients about the end of life

In your experience, have there been situations where opinions differed among intensivists regarding criteria for access to ICU care, and the appropriateness and adequacy of care? If so, how did this affect the working atmosphere?

That happens a lot. It's good to have different opinions and varying degrees of empathy, because if you work in an environment where everyone thinks the same way, it's easier to gravitate one way or the other.

However, we mustn't allow ourselves to become embroiled in conflicts. We need to discuss with each other in a way that brings differences of opinion to light, that we justify and argue our positions, and that we arrive at a common strategy that is in the interests of all concerned. Ensuring a good working atmosphere in an ICU, in which every opinion and every feeling may be openly expressed without anyone taking offense, feeling judged or pushed into a corner, is a prerequisite for the best possible treatment of patients, especially when it comes to the end of life.

In the absence of this work climate, in the absence of opinions and constructive debate, with everyone sticking to their own point of view, there is a danger that all kinds of therapeutic strategies will be applied to the patient, depending on who is on duty at the time. Of course, this isn't good practice. It only leads to trouble and suffering for the patient, frustration for the caregivers, and confusion and mistrust from the relatives, who don't understand exactly what's happening next.

Are there multidisciplinary workgroups within hospitals or between hospital and resident physicians that address end-of-life care?

Unfortunately, this is still very inconsistent and fragmented in Italy today. However, I do know firsthand of several positive examples where physicians from different specialties sat around the table and exchanged opinions and treatment concepts in a collegial manner and also managed to communicate effectively with patients and families. Having said that, there are still situations where the aforementioned aspects are left to the good will and ethos of the individual. Between the two, there are sometimes more, sometimes less functional circumstances that could still benefit from improvement as part of a broader project.

Why is the end of life often not talked about until it is almost too late for frail patients or their families? Is it a taboo topic for physicians and patients?

A few years ago, I wrote a commentary together with some colleagues that borrows from a scene from the movie "Hate". The opening scene states: "This is the story of a man who falls from a fifty-story building. As he falls from one floor to the next, the man keeps talking courage to himself: 'So far, so good. So far, so good. So far, so good.' Now, the problem isn't the fall, it's the impact."

The commentary itself refers to a patient with end-stage COPD who experiences a series of critical incidents from which he barely recovers each time. "So far, so good" until the end, that is, reaching the ground, which is when the patient dies after having spent his last weeks in the hospital on artificial ventilation. The family is shocked. "But how can that be? He was fine until yesterday" - they would wonder.

Obviously, this can only mean that the communication with the patient and the family about the treatment and its prospects was entirely inadequate.

Joint-care planning is one of the most powerful tools provided by Law 219/2017, also known to many as the DAT Law (Disposizioni Anticipate di Trattamento or advance healthcare directives).

„In the patient-physician relationship [...], with regard to the evolving implications of a chronic and restrictive disease or one characterized by unstoppable progression with an unfavorable prognosis, a joint treatment plan may be established between the patient and the physician to which the physician and the treatment team must adhere should the patient be in a state in which he or she is unable to give consent or is incapacitated.“ ⁵

This plea is extremely important. After all, when a diagnosis of an aggressive tumor, a neurodegenerative disease, or a grim prognosis is made, an adequate delivery of information to the patient and family on the course of treatment and prospects of recovery is critical.

If there is no such foundation, the physician, often the intensivist, must deal with a situation that is already tantamount to the impact on the ground [such as the family asking]: “But how? Until yesterday, he was in great shape.”

What's the role that family physicians should play in this context?

In Italy today, primary care physicians play virtually no role in end-of-life education and communication. The average age of general practitioners is high. Many studied 30 or 40 years ago and were never exposed to these issues during their training. Of course, quite a few have undergone further training, but many have not.

By contrast, colleagues who became GPs in recent years underwent more structured training, including in bioethics, palliative care and communication. I assume that the new generation will be able to close the gap.

While it takes training, it also takes some practice to be able to talk about the end of life. In the future, preventive care and conversational routines will be an important improvement between physicians and patients. Today, this is all an additional workload that not all physicians are willing to take on. The impact this has on their own mental health plays an important role. And of course it isn't easy to talk to a patient with a chronic and progressing disease about whether and when things are likely to get worse and what decisions need to be taken now, as long as the patient still enjoys a good quality of life and is in stable health. Dealing with the issue is not easy for the physician, nor is it easy for the patient and family.

There are numerous references to "difficult conversations" in the relevant literature. But all experts agree that they must be facilitated, as they relieve the burden on both the physician and the patient.

The role of nurses and junior physicians

Are nurses involved in the decisions of patients at the end of life?

I would like to see the role of nurses in Italy gradually expand in this respect. Compared to other countries, we are lagging a bit behind. Within ESICM (European Society of Intensive Care Medicine), many nurses participate in the bioethics working groups that organize training courses. They're found among the lecturers and among the course participants. The message to nurses is to make their voices be heard.

Their role is often to initiate and mediate conversations within the team, because after all, they literally hold the patient in their hands, they take care of them, they are in direct contact with their body. Especially in the ICU, they have a very close relationship that physicians don't have.

We mustn't ignore the voice of those who stand by the patient's side for hours, witnessing their progress or suffering. Instead, in Italy, nurses are often subject to the decisions of others, much to their frustration.

What training do resident physicians receive for end-of-life care?

Unfortunately, again, there is no regulated training path in Italy; instead much depends on the good will of the students and their lecturers. If we can avoid such educational disparities, this will guarantee us a more homogeneous approach to the end of life in the future.

Do you have any recommended reading for aspiring physicians who have never explored the topic before?

See for instance: Elia F, Aprà F. Walking Away from Conveyor-Belt Medicine. N Engl J Med. 2019 Jan 3;380(1):8-9. doi: 10.1056/NEJMp1810681. PMID: 30601741.
The document is called "Raccomandazioni di etica clinica per l'ammissione a trattamenti intensivi e per la loro sospensione, in condizioni eccezionali di squilibrio tra necessità e risorse disponibili" (in English: Clinical Ethical Recommendations for the Initiation and Discontinuation of Intensive Care in Exceptional Circumstances, in Case of Imbalance between Needs and Available Resources)
On February 20, 2020, an outbreak of SARS-CoV-2 was detected in Italy, a virus that had first appeared in China just a few weeks earlier. The virus causes COVID-19, a disease often associated with severe acute respiratory failure. Despite the government's restrictive public health measures, the number of cases in Italy continued to rise. The growing number of cases in Lombardy and neighboring regions led to a steady increase in the number of patients in hospitals and ICUs. At that time, a significant fraction of patients diagnosed with COVID-19 required respiratory support due to interstitial pneumonia characterized by severe hypoxemia. The acute phase of the disease could last for many days, with invasive or non-invasive ventilatory support required for weeks. All of this resulted in the need for highly skilled intensive care professionals. This high demand created an imbalance between the real need in the population and the actual availability of intensive care resources. In this sense, the availability of ICU beds was one of the main problems within the healthcare system. Since the beginning of the epidemic, extraordinary efforts have been made to increase the number of intensive care beds and ventilators. Against this backdrop, SIAARTI published guidelines similar to "Disaster Medicine" on March 6, 2020. These define the criteria for access to and discharge from ICUs and also incorporate the principles of distributive justice and adequate allocation of limited healthcare resources, as well as clinical appropriateness and proportionality of care. The emphasis was placed on providing intensive care only to those patients who had the greatest chance of therapeutic success and who had the "highest life expectancy." To this end, it was necessary to link the need for intensive care with other aspects, including the severity of the disease on the one hand and the severity and number of pre-existing comorbidities on the other. Thus, the principle of "first come, first served" did not necessarily rule in this case. Read more about this topic: Vergano M, Bertolini G, Giannini A, Gristina GR, Livigni S, Mistraletti G, Riccioni L, Petrini F. SIAARTI recommendations for the allocation of intensive care treatments in exceptional, resource-limited circumstances. Minerva Anestesiol. 2020 May;86(5):469-472. doi: 10.23736/S0375-9393.20.14619-4. Epub 2020 Apr 3. PMID: 32242647.
„[...]In order to ensure the mental and physical welfare of the patient in relation to the material and human resources available, the military physician ensures the maximum humanization of care by practicing a triage that takes into account the latest scientific knowledge, and acts according to the principle of "maximum effectiveness" for the largest possible number of people [...]" (Code of Medical Ethics 2014, Art.77).
Law No. 219 of December 22, 2017, "Regulations on informed consent and advance treatment arrangements. (18G00006) (GU Serie Generale No. 12 from 16 January 2018)", Article 5.