Who would not want everything possible done to stay alive or to save a parent, a spouse, or a child? In a sense, what both the medical profession and the patient need is a mediator to help them make rational decisions. In William Shakespeare’s play, ‘The Tempest’, the magician Prospero figuratively plays this role…Unfortunately, not many Prosperos walk the hallways of today’s hospitals. Roger C. Bone (Bone 1997a)

The debate over medical futility

The word futility emerged in the medical vocabulary in the late 1980s to describe a concept as old as the medical profession itself (Galanakis 2000): the point at which a therapeutic action is useless. An undisputable criterion of cessation of medical efforts in the past, futility became of interest again very recently, just when medicine had stopped to be anything but futile in the face of death, and was fiercefully debated in the 1990s through the attempts of physicians and scholars for a definition applicable in clinical practice, especially in the intensive care setting (Helft et al. 2000). Schneiderman et al. in their influential 1990 proposal defined a treatment as futile either if it had less than 1 chance in 100 of success (quantitative criterion) or if it merely preserved permanent unconsciousness (qualitative criterion) (Schneiderman et al. 1990). The proponents of the so called physiologic futility suggested that futility can only be invoked in cases that a particular treatment would be physiologically ineffective, rejecting any qualitative aspect of futility (Helft et al. 2000; Truog et al. 1992). Edmund Pellegrino, by contrast, in his permissive approach stressed that the notion of futility can only be defined qualitatively, as the balance of effectiveness, benefit and burden of a particular treatment (Pellegrino 2005). Others implicated communitarian consensus and proposed an operationalising definition of futile treatment, as a treatment that is so unlikely to succeed that many people—professional and lay persons—would consider it not worth the cost (Murphy and Finucane 1993).

Despite all this elaborative theoretical deliberation the question of futility remained unresolved and even the role of physicians as representatives of patients’ best interests has been questioned. The legal system has also struggled with the issue without definite answers (Prip and Moretti 1997). Interestingly, decision makers, such as medical associations and hospitals have included futility policies in their guidelines (Waisel and Truog 1995); however they clearly have avoided to get to the heart of the issue, which has always been whether or not sustaining life is in the patient’s best interests. What has mostly been missing in this fierce debate are the patients’ attitudes. Patients’ input has appeared in medical literature in the limited form of personal accounts. These accounts, however, may offer much on the understanding of the pragmatic dimensions of difficult theoretical issues, such as that of futility.

Roger C. Bone (Bald Knob, Arkansas 1941; Toledo, Ohio 1997)

Dr. Roger C. Bone succumbed to metastatic renal cancer on June 8 1997, at the age of 56 years. An outstanding medical figure of our times, honoured with major awards, he had always remained a committed clinician in the fields of pulmonology and intensive care. He graduated, first in his class, from the University of Arkansas Medical School in 1967 (Weil and Parillo 1997). He served as a medical officer with The United States Army during the war in Vietnam and was decorated with the Army Medal of Valor for volunteering to remove a live grenade from the body of a wounded soldier (Davidoff 1995). The soldier died 3 h later but, as Roger Bone himself commented 20 years later, he had given him a survival chance (Davidoff 1995).

After his training in Pulmonology and Critical Care he returned to the Medical School of Arkansas as a Full Professor, only 10 years after his graduation. In 1993 he was appointed as President, Chief Executive Officer and Professor of Medicine at the Medical College of Ohio in Toledo (Weil and Parillo 1997). He conducted major investigative work on sepsis and described the “systemic inflammatory response syndrome” (SIRS) and the “compensatory anti-inflammatory response syndrome” (CARS). He was a prolific author and editor, and participated in the editorial boards of several medical journals (Weil and Parillo 1997; Davidoff 1995).

From his diagnosis with renal cell carcinoma at the beginning of 1994 until his death in the summer of 1997 he devoted himself to end-of life issues and shared his thoughts on “the dying part of living” (Bone 1996a) through essays in medical journals and through a comprehensive guide entitled “Reflections, a guide to end-of-life issues for you and your family” (Bone 1997b). Roger Bone’s active involvement with end-of-life issues coincided with the peak of the debate over medical futility.

Roger Bone and the question of futility

Roger Bone thought the “serious and profound question” of futile care to be one of the most important challenges for the medical community (Bone 1996b). The “Faustian bargain”—as he called it, using another imaginary figure from his favourite classics—that should be faced is “…that there are ICU patient populations who use excessive resource and have good outcomes and there are ICU patient populations who use excessive resources and have bad outcomes. I would suggest that the latter population is potentially futile care where the outcome is projected to be poor and associated with increased patient suffering and potential harm” (Bone 1996b). He believed that there are objective measures in medicine that can be used for defining the latter population (Bone 1996b). Quoting the 19th century poetess Elisabeth Browning “How do I love thee? Let me count the ways” he concluded that “measurement in the medical community is generally not as imprecise as the measurement of love, nor is it as prone to error” (Bone 1995). Futility lies in the abuse of technology in terminal care: “…supportive techniques, like dialysis for a patient in a futile situation, prolong the agony of death” (Bone 1996a) and “…we have kept patients with no chance of recovery alive on machines because of the threat of litigation and because of habit and tradition…” (Bone 1997c). He thought that it is included in the mission of the medical profession to change this attitude “letting critically ill patients kept alive on a ventilator die naturally and humanely” (Bone 1997c).

Roger Bone, however, favoured potentially effective treatments, including experimental protocols, even for patients with the poorest prognosis. “…I believe that even if the prognosis is hopeless, enrolment into experimental protocols may be warranted, but supportive therapy alone is not…” (Bone 1996a). He had chosen for himself to try experimental anticancer therapy and he graphically described his own development of SIRS and multiple organ disease syndrome (MODS) as side-effects of the treatment, concluding that “patients need hope and treatment provides hope” (Bone 1996c). Although he was entirely aware of his own prospect of premature death as he had “…played the percentage game and lost” (Bone 1996a), he encouraged patients to beat the numbers. “I strongly encourage anyone with such a condition not to let “the numbers” to dictate what their survival will be” (Bone 1996a). He also encouraged patients to seek relief and appropriate palliative care, even invasive means, such as radiation, surgical tumour decompression or neurosurgical intervention, to control pain if drug therapy is not enough (Bone 1997b). To him, no method irrespective of invasiveness could be considered futile if it provides the terminally ill patient adequate pain relief.

He perceived the involvement of bureaucrats and administrators to control contemporary medicine as a major threat for the mission of medical profession (Bone 1997c). Roger Bone advised physicians “collectively” to get involved in the economics of healthcare, but “individually” to remain “the patients’ advocates” (Bone 1996b). In his farewell “My hope for Medicine” he stressed the importance of public education about “how suffering can be stopped, how money can be saved, and how resources can be put back in research so that medical advances can continue” (Bone 1997c). It is within the responsibilities of medical community to teach people “that death occurs before one can prove brain death” and to take leadership for an “ethical, legal and economic consensus” (Bone 1997c). For his part, he did his best towards public education in end-of-life issues, with his book Reflections, a guide intended for individuals who, like himself, “are not going to be surprised by death”. In the first lines of this book, Roger Bone presented his basic idea about futility, writing that “Dying can be a peaceful event or a great agony when it is inappropriately sustained by life support” (Bone 1997b).

Healthcare professionals find it easier to “hide behind complicated machinery or complex pharmacologic compounds to keep patients alive instead of engaging in a straightforward discussion on death and dying” (Bone 1997a). For a thorough changing of the attitude of the medical community toward the dying patient, who often “becomes a medical pariah, a bearer of death whose terminal disease defies the ‘technologic’ of modern medicine”, Roger Bone advised for a prompt education of the physicians of tomorrow on end-of-life issues (Bone 1997b).

Comment

End of life care has dramatically changed with the introduction of life-sustaining technology, which exaggerated the conflicts between patients’ autonomy and dignity, physicians’ authority and responsibility, and fair resource allocation. Roger Bone, invoking the imaginary figure of Prospero addressed poignantly that these conflicts often require the skills of a magician to be resolved.

Roger Bone had been interested in ethical issues long before he was diagnosed with renal cancer. Futility is first met in his writings in the guidelines of the Society of Critical Care Medicine for the initiation, continuation and withdrawal of intensive care, as one of the Chairmen of the Consensus Panel (ACCP/SCCM Consensus Panel 1990). A physiologic approach of futility was hesitantly endorsed by the panel. In one of his subsequent papers, futility was included in a thorough discussion of ethical issues in a broader permissive way, with input from the patient about goals of treatments, an approach closer to the view of Edmund Pellegrino (Vevaina et al. 1993; Pellegrino 2005). Roger Bone came back to the issue of futility in several of his last personal accounts and made thoughtful remarks, which are summarised in Table 1.

Table 1 Roger Bone’s points on futility
Full size table

Roger Bone believed that the very meaning of futility is the abuse of life sustaining treatments in terminal conditions, just for the sake of preserving life. Did he endorse the proposed qualitative and quantitative criteria? We believe he did. Life-sustaining treatments in terminal diseases fulfil both, as they usually are associated with poor outcome and increased patient suffering. However, he rejected futility for potentially effective treatments, advocating inclusion to experimental protocols. The question of whether he was mostly thinking from the physician’s perspective advising for the importance of research or from the patient’s perspective, seeking hope in promising new treatments could be raised at this point. Following his personal account of his experience with an experimental anti-cancer treatment, we believe that Roger Bone during the last months of his life viewed medicine mostly “through the eyes of a patient” (Bone 1997c), who, as every patient, needed hope. He most probably had in mind not the unrealistic hope that might lead to demands for futile life-prolonging treatment (Schneiderman 2005), but the illuminative hope for the best in life that is left. Hoping for the best and preparing for death need not be mutually exclusive (Back et al. 2003). Quoting Dr. Patrick Francis Sheehy “If the patient has been fortunate enough to have a physician who can be completely honest with him, the patient will begin to see he has a second option. This is to exercise the right to quit frantically seeking a miracle of cure and face the fact of death”, Roger Bone stressed the key role of the physician in maintaining this balance (Bone 1997a).

The movement to restrict the physicians’ role, has moved futility decisions away from the bedside to committees, institutions or even statutes. Roger Bone had always believed that doctors should remain the best advocates of their patients. As an active clinician in his earlier writings, he criticised legislative attempts for cost control in healthcare using the paradigm of the Procrustean bed (Bone 1987). One of his major concerns was that financial issues could importantly affect the quality of healthcare, even the very mission of medicine, so he would add cost in the balance of effectiveness, benefit and burden in Edmund Pellegrino’s proposal for the determination of futility (Pellegrino 2005). In his last personal accounts, he continued to emphasize the leadership role that medical community should undertake for the education of the public, towards an ethical, legal and economic consensus on futility (Bone 1997c). His recommendations (Bone 1997b) (Fig. 1) echo the concerns which have been very recently raised through the medical community in the United States about the interference of the Government and legislative system, “practicing medicine without a license”, in purely medical issues (Drazen 2007).

Fig. 1
figure 1

Roger Bone’s recommendations to medical community for appropriate end-of-life care

Full size image

The aspect of caring for the patient until his very last moments has been overlooked in the discussion about futility. Palliative care is often neglected in institutional end-of-life policies and it is not clear to patients that the alternative of “doing everything” is not “doing nothing” (Fisher and Raper 2005).

Roger Bone had aimed to be, in his own words, a “thinking pulmonologist”. Coping with terminal disease himself, he was involved in end-of-life care at a time when futility was one of the most discussed issues in medical ethics. His own answer to the question of futility lies in trust between doctors and patients. With the authority of an experienced intensive care professional and the sensitivity of a patient facing death, Roger Bone’s most important message to his colleagues was to keep their mission as patients’ advocates remaining honest and caring for them until the end.