Aggressive resuscitation rituals at the end of life are perhaps the most disturbing responsibility carried by critical care providers. Although we seek to avoid bad deaths through developing rapport and shared decision-making with loved ones, it remains normal practice to suddenly become involved in a code or postarrest situation where we are newly caring for a terminal patient who has not set limitations of care. Twenty-five years ago, I was a Critical Care fellow at the University of Pittsburgh when I witnessed an exceptionally horrific yet heroic resuscitation of a man caught in this hapless situation.
I was moved to verse, and it came to pass that the dark satire of Mr. Linger and his dour-handed physician was enshrined in the 26-stanza ballad, “The Rime of the Ancient Intensivist.” This metered poem relates the phantasmal story of a man’s soul ensnared within his insentient living corpse, kept alive through heroic clinical interventions in a mystical ICU that was empowered to prevent death. His doomed intensivist, Dr. Griffin, was saddled with the desecration of Mr. Linger’s body through these interventions in order to support the family’s futile hopes for recovery.
This clandestine project was intercepted by my attending, Dr. John Hoyt, who recognized the reason behind the rhyme. Through his connections as Society of Critical Care Medicine (SCCM) president, he helped get the work published in Critical Care Medicine (1). In an accompanying commentary, Dr. Hoyt spoke to the palpable frustration of ICU providers who must yield control over decision-making and professionalism in cases where there is no prognosis for meaningful recovery (2).
To understand what progress has been made since 1995 and what hope we have for the future, it can be useful to consider what pressures at the point of care precipitated the drafting of “Rime,” how leaders have responded to these pressures, and how perspectives have evolved. Those of us who work with the critically ill may especially relate to different parts of this story.
My initial medical training was through inner-city hospitals where the house staff managed virtually all of the care. This was during the peak of the early AIDS epidemic when these hospitals were crowded with younger patients who were dying without effective therapies. Landing on mechanical ventilation with pneumocystis pneumonia happened commonly and was considered a death sentence.
The senior residents used to have me lead the do not resuscitate (DNR) conversations for the AIDS patients. I was under a lot of pressure not to return from those conferences without successfully obtaining “consent” for the DNR order. This callous practice led to a certain emotional distancing from the horrible plight of these people and their loved ones. As it turns out, this sort of disengagement was not new. Physicians were disowning the untreatable many centuries ago. The Hippocratic Corpus has passages that relegate terminal care to a non-medical condition:
Medicine is an art that cures the sick, or lessens their pain, and which has nothing to do with incurable diseases: for that which is irremediable, medicine knows not how to attempt its cure….
There are some who reproach us for avoiding such patients who are already worn down by disease: this is like requiring of any art to do that which does not belong to it (3).
Following the time of Hippocrates, those with patently terminal conditions had limited contact with physicians, except for use of medications to reduce pain and suffering. However, in the 20th century, medical interventions started to impact outcomes on the acutely dying, and this distancing started to close. As Dr. Atul Gawande explained in his intriguing documentary, Being Mortal, it used to be that once an individual became severely ill or injured, their trajectory toward death was predictably short. Following the arrival of mechanical ventilation and related interventions in the 1950s, this trajectory more frequently became drawn out. Persons with advanced chronic diseases were increasingly rescued through use of critical care interventions, only to succumb a few weeks or months later (4).
Healthcare leaders were not passive during the 1960s while this practice developed. Physicians and other activists worked hard to prevent nightmarish scenarios of indefinitely “being kept alive on machines.” Hospitals began reporting on the agony that terminally ill patients experienced from resuscitations that only prolonged their death. This led to procedural developments to avoid performing code blue on inappropriate patients and required the determination of an ethical process to meet this need. In 1974, the American Medical Association became the first professional organization to propose that the decision not to resuscitate must be formally documented in the chart and communicated to attending staff. This initiated the development of explicit DNR policies. The highly influential 1983 President’s Commission report, “Deciding to Forego Life-Sustaining Treatment” strongly encouraged providers to allow patients and their surrogates to be involved in end-of-life decisions (5).
Although policy around DNR orders gave patients authority to limit medical interventions, this groundwork also established a basis for patient autonomy. One could choose to limit care, so why should there be a problem with demanding that care be continued? Medical staff felt increasingly manipulated to press on with inappropriate terminal care, and this led to pushback.
Enter the “Futility Movement.” Beginning in the late 1980s, this was a period of policy development and political pressure that attempted to convince society that physicians could use their clinical judgment or epidemiologic skills to determine whether life-sustaining treatment would be futile in a particular situation. Once such a determination had been made, advocates argued that the physician should be allowed to withhold or withdraw the treatment, even over the objections of a competent patient or surrogate (6). Among the primary motives for seeking this authority were barriers in communication. These barriers included the failure to initiate planning discussions during times when the patient was cogent and/or family present, practice patterns that did not prioritize these discussions, ambient belief that physicians should avoid yielding control of medical decision-making to nonmedical persons, and social barriers around raising the topic of limiting care.
For example, for many years the phrase, “pulling the plug” on one’s relative was a term used to refer to the decision to basically kill a loved one as an act of mercy. This way of framing the problem baked an extra layer of drama and personal accountability into an already difficult circumstance, creating lasting trauma for the decision-maker and an overall hesitancy to engage the process. An effective illustration of this predicament was played out during the 1989 movie, Star Trek V: The Final Frontier. In an intense scene, one of the officers, who happened to be a physician himself, made this regretful choice for his father (7).
Some families were emotionally unable to confront such harsh end-of-life decisions. Physicians, as in my case, were not particularly trained to help them. Others suggested that doctors were making recommendations outside their scope of practice, and that “only God” should make life-and-death determinations. Consequently, ICU providers were left with the understanding that they should “do everything” to prevent death. There was no clarity as to who had final authority in these cases. This brought the issue into the courts. In 1990, after working with the family for months, a hospital in Minnesota sought legal support to withdraw care on a terminal patient. The patient’s husband was an attorney, and the Helga Wanglie case quickly drew national attention (8).
Helga Wanglie was an 86-year-old woman who suffered a series of unfortunate events toward the end of her life, including a cardiac arrest that left her in a persistent vegetative state. The family’s interest was in keeping the patient alive, according to their perception of her wishes, despite the clear medical position that hope for a meaningful recovery was futile. The dispute incited our professional organizations to rally. By 1991, the SCCM, the American Thoracic Society, and the American College of Chest Physicians had all issued consensus statements endorsing the concept that physicians were not obligated to provide life-supporting interventions that are deemed useless or futile (9–11).
Mr. Wanglie won the case for his wife, ensuring that her providers would carry on with use of the ventilator in her vegetative state. She died within days of the verdict. Interestingly, the court had not mandated ineffective treatment to continue. The hospital had argued that the ventilator was of no beneficial value since it would be ineffective in restoring the patient’s consciousness, whereas the husband had argued that the ventilator was in fact effective at maintaining the patient’s life. Even so, the judge gave priority to patient autonomy. The question of who was most appropriate to make decisions for the patient was found to be more important than the soundness of the decision itself (8).
Echoes of Wanglie reverberated through the 1990s. Despite objections from our professional societies and mentors, physicians and nurses were left to find ways to work with persons demanding inappropriate care, one case at a time. “The Rime of the Ancient Intensivist” was written while we choked down this evolving reality.
A much older work written in similar meter described an “Ancient Mariner” who shared a story of supernatural suffering for committing a crime against Nature. As punishment, the Mariner carried a dead albatross (12). Our intensivist in “Rime” also carries a guilt burden, brought on by persisting with noxious interventions upon a fellow human being who cannot stand to benefit. One feels cognitive dissonance during physical interventions of acute resuscitation in hopeless situations, as well as a sense of helplessness around how this misplaced effort costs others. In general, providers feel responsibility to steward resources appropriately, yet our obligations to the individual patient can prevent us from becoming effective gatekeepers (13). We yield to the precedents and standards around caring for each individual, while trying not to think about the opportunity cost of these practices for our more viable patients or to the general population (14).
The impact of knowing what to do in an ethically challenged situation, but not being allowed to do it, has been described as “moral injury”: a complex “deep-soul wound.” (15) Moral injury in the healthcare setting has been gaining attention in recent years and is thought to contribute to the inordinate rate of physician suicide and burnout. Research around this topic remains limited (16,17).
The “Futility Movement” was an effort to liberate our professionals from this ethical burden. However, by the early 2000s, it became clear that a new paradigm was needed. Experts concluded that our autonomy-loving culture would simply never allow physicians to unilaterally cease treatment (18–20). Moving forward in constructive fashion would instead require proactively engaging and genuinely encouraging surrogates around decision-making at end-of-life.
Unfortunately, I was slow to incorporate this improved approach, which once triggered a disaster when I misdiagnosed a patient’s condition as being terminal. This happened about a decade following “Rime.” We were consulted for a middle-aged man who had suffered cardiac arrest shortly after uneventful knee surgery. The patient had been on an epidural infusion. Following the prolonged arrest, he showed signs of severe anoxic brain injury, a condition with very poor prognosis. During the next 2 days, our team hesitated to perform further studies. To our surprise, the patient woke up with normal mentation but was unable to move his legs. Emergent scanning revealed a subacute epidural bleed in his thoracic spine. We were too late to reverse the dense paraplegia.
Years after the legal settlement, I sat down alone with this man and his wife to understand their side of the story and offer explanations. The patient had suffered several devastating hospitalizations. His wife expressed justifiable frustration and admonished me to always consider the effects of discounting a low-probability diagnosis, especially if the downstream effects might be catastrophic.
Framed another way, she warned me never to eliminate hope because that mindset can prevent consideration of viable possibilities. Her passionate rebuke echoed the wisdom of millennia: one of the main ways a culture serves its members is by helping them face terrible evil and adversity (21,22). During catastrophic health events, physicians often become the cultural leaders that people look to for sense-making and guidance. When clear-eyed, hope gives us courage to confront our circumstances and the capacity to surmount them (23). Physicians have the capability, and arguably, the duty, to guide compassionately through the dark times with hope as our candle.
Intensivists can still morally engage and support devastating end-of-life situations if we prioritize the families’ wishes and act as responsible stewards of hope. Oftentimes, hope should not be weighted toward a favorable outcome, but we can still explore that angle early, seeking to understand the surrogate’s position and empathically find ways to move forward, respecting their needs. Ethical conflicts may still emerge, but respect for patient autonomy includes acceptance of the judgment of competent surrogates, regardless of perceived shortcomings. The SCCM has partnered with several other prestigious critical care organizations to create recommendations and a seven-step conflict resolution process for managing intractable differences. These thoughtful practices should be incorporated into local hospital policies (24).
The emergence of Palliative Medicine as a certified medical subspecialty in 2006 has been a huge help in guiding these conversations. Statistics show that over the past decade, there are 10% fewer people dying in hospitals, and more people dying in hospice settings and at home (25). This is helpful, but those of us who work in ICUs have little sense of these changes, as we are only aware of those who die in the hospital.
Our patients are getting older, with more medical problems, and are not necessarily any more willing to limit care. Where I work in southern Indiana, our ICU frequently consists of at least 50% patients with a near-terminal prognosis, very unlikely to survive the next 6 months. Anecdotally, this number is not unusual (26), although other series put the percentage closer to 20% (27–29). Clearly, there is a great need to promote end-of-life planning as an outpatient, well before this vulnerable population ends up hospitalized in an ICU.
Despite these numbers, there has been steady progress in engaging transparent conversations with those making end-of-life decisions for the critically ill. There is less paternalism around the delivery of recommendations, and most ICUs now involve the family very early. Palliative Care specialists support a culture of collaboration. The process of defining limitations of care around a loved one’s preferences has become normal practice, rather than a periodic experience (30).
Accordingly, the verbiage we use has become softer and more respectful of the importance of opinions from all stakeholders in medical care. There is a greater understanding that prognostication is fallible. The word “futile,” which used to be laced with judgment and emotion, has become an uncommon description of specific interventions that simply cannot accomplish a desired physiologic goal. Physicians have benefitted from partnerships with all healthcare professionals in the creation of policy statements around managing end-of-life. Policies better support this more open practice and support comfort measures as a medically appropriate goal of treatment (26).
Most recently, the coronavirus disease 2019 pandemic has forced conversation around the ethics of providing medical treatment in the setting of scarce resources. During the first wave of mortalities in the United States, a multilateral statement in the New England Journal of Medicine (14) and an online document from the University of Pittsburgh (31, 32) led thinking and practical planning over management of ventilators when hospitals were getting overwhelmed. In this setting of living dystopia, many providers learned to discern the difference between the traditional goal of medical ethics, which is centered on the well-being of individual patients, versus the ethics of scarcity, which instead emphasize the benefit of care to the population. People across the country began discussing the concept of doing the greatest good for the greatest number of people. Now, we are better prepared to have discourse over the excessive use of resources for other terminal conditions.
This was an example of physicians taking the lead on end-of-life management in an arena much larger than a family circle. Healthcare administrators have found it increasingly valuable to support the voice of physicians in moving their mission forward. In recent years, I have been called to lead at many levels of our organization. My work schedule can range from managing shock at the bedside near midnight to running our Quality Committee of the Board of Directors several hours later.
Whether leading by example, appointment, or through quiet background guidance, every medical professional has the opportunity to substantially impact how care is delivered at the end of life. Virtually, all stakeholders support appropriate management of resources, and those who are not clinically educated listen closely to medical leaders who can offer firsthand perspective. Patient-Family Advisory Councils can be harnessed to help families through the ICU process and frame expectations compassionately. Policies can be honed to involve Palliative Care specialists upon entry to the ICU and incorporate conflict resolution. Culture can be influenced to truly support a patient-centered approach that fosters quiet pride in guiding patients through even the most idealistic family mandates.
In the end, we are all sentenced to either cope with the inevitability of our own deaths or to blissfully avoid the confrontation. Critical care providers are privileged to engage the final steps of this journey with terminal patients and their loved ones, to counsel where they might rest their hopes and to respectfully support the dying process, no matter what choices are made.
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