Brains, Ethics, and Elective Surgeries: Emerging Ethics Consultation
Ford, Paul J., DeMarco, Joseph P., Ethics & Medicine
Increasingly health care teams seek clinical ethics advice related to patients being considered for elective neurosurgeries. Traditional clinical ethics consultations have focused on end-of-life decisions and/or hospitalized patients regarding decisions with considerable time sensitivity. Ethical deliberations about elective surgical procedures do not fit well into reactive clinical ethics consultation practices commonly employed for acute clinical ethics. The ethics consultant should be cognizant of the differences between these consultations and more traditional clinical ethics consultations. Performed carefully and reflectively, ethics consultations related to elective neurosurgeries can assist physician teams and patients navigate the particularly complex decision-making regarding neurosurgeries. We explore important similarities and differences between the two types of consultations and suggest how ethics consultants can be effective in the sphere of ethics consultation for elective neurosurgeries.
Key Words: Ethics Consultation, Surgery, Informed Consent, Neuroethics
Running Title: Elective Neurosurgery Ethics Consults
Leaps in knowledge within the neurosciences have translated to increasingly complex neurosurgical choices. Brain imaging technologies have improved in resolution and type. We can now better visualize abnormal formations as well as correlate functions with activations within the brain. On the interventional side, we are able to more precisely target sites within the brain for ablation or electrical stimulation. Rather than diminishing the difficulties in care, these new abilities and knowledge provide an increasing number of reasonable options that have differing types of benefits and harms. (Ford and Henderson 2005) Although, elective neurosurgery (ENS) interventions intend to improve quality of life, they also force patients and health care teams to make treatment decisions that balance categorically different benefits and harms. This generally occurs in the absence of an overriding concern for risk of immediate loss of life or function through inaction. A clinical ethics consultant may be helpful to both the patient and the medical team in complex cases regarding whether an ENS intervention should be offered/consented to. The ethics consultant should be cognizant of the differences between these consultations and more traditional clinical ethics consultations. This includes clearly understanding the limits of the ethics consultant's role.
Although traditional clinical ethics consultations have focused on end-of-life decisions and/or hospitalized patients, increasingly health care teams seek clinical ethics advice for patients being considered for ENS. (Ford and Kubu, 2006) These consultations have in common many of the features found in acute/emergent clinical ethics consultation. Yet, these consultations also vary somewhat from these common types of ethics work. We will briefly review the character of ethics consultation, elucidate unique aspects of clinical ethics consultation for ENS, provide a brief sample case, and conclude with suggestions for the use of ethics consultations for ENS.
Acute/Emergent Ethics Consultation
The most common type of ethics consultation, acute/emergent clinical ethics consultation,1 pertains to critically or terminally ill patients in a hospital setting.2 Clinical ethics consultants perform these with significant decision-making urgency because of the time sensitive nature of the particular situations. The reactive clinical ethics consultation model usually engages in "emergent" ethics consultations because of the limited time frame involved in decision-making. This includes acute illnesses as well as actual emergency medical care. Although clinical ethics consultations are almost always "elective" in the sense of not being required by law or custom, they are "acute" in the sense that they address medical emergencies or high acuity circumstances for which a time sensitive decision must be made. For the sake of this article, we use "elective" to refer to the type of medical decisions being made with particular emphasis on timeframe and the "electiveness" of the medical intervention.
In the acute setting, ethics consultations commonly occur when significant conflict already exists between various parties. The role of the consultant tends to be as a mediator, facilitator, or arbitrator in conflict resolution scenarios. (Dubler and liebman 2004; Orr 2001) Balancing values in ethical decisions must be done in the context of very immediate pressures placed on all participants in the healthcare endeavor.3 Important skills in acute clinical ethics consultation include careful listening, articulating values, and providing evaluation of value consistency in decision-making. These consultations usually occur within an inpatient hospital setting, which raises many significant concerns about coercion and power differentials in the physical interdependence of having been admitted to an institution.
Elective Neurosurgery (ENS) Ethics Consultations
Many contemporary neurosurgeries involve elective procedures intended to improve quality of life by, for example, relieving involuntary limb movements, alleviating pain, or reducing seizure frequency.4 Providing these therapies may allow patients to better participate in their activities of daily life (ADL) or simply to live with less suffering. These patients may be able to feed themselves, walk in an unaided way, gain privacy, or allow painless physical interactions with others as a result of a successful ENS. While gains in function may be significant, and often highly valued by the patient, these procedures are not characterized as life saving. Even though ENS are not undertaken to save lives, the procedures still involve serious risks. In some cases, potential harms of these procedures may include paralysis, change in cognition/personality, or death. There has been considerable discussion of the use of multidisciplinary medical care teams, often including a bioethicist, to appropriately sort through these challenging choices. (National Commission 1977; Greenberg 2004) An individual ethics consultant can play on important role even beyond participation in these multidisciplinary groups. ENS ethics consultations must address both the complexities of a quality of life surgery that entail significant risks as well as the fact that ENS procedures are often innovative and may involve significant uncertainty.
In ENS ethics consultations, it is more likely that a physician or medical team will request these consultations because of a moral distress of the physician, within the medical team or within the patients themselves rather than as a result of an open conflict as found in many acute ethics consultations. Further, the power imbalances and coercion found in acute consultation are decreased since the ENS ethics consultations usually occur with patients as outpatient visits.5 In conjunction with the fact that patients can leave the medical environment in order to consider their decisions after a consultation, ENS ethics consults may provide an environment more conducive to competent decision-making than the inpatient setting. In particular, this organization may limit the potential for coercion. However, patients eligible for ENS often have chronic problems that may lead them to request desperate measures if they are left with no standard/non-invasive therapies. This may hinder their ability to appropriately balance risky options. For instance, a patient with intractable pain may be coerced into a dangerous innovative treatment if great care is not taken. On the other hand, that same patient should not be kept from a potentially beneficial treatment if this becomes the most reasonable option. This type of case may be where a clinical ethics consultant can provide an important non-medical perspective to help counterbalance potential undue influences.
Although the goals of ENS consults may be similar to other types of consults, the role of the consultant may have subtle differences. Less often, the consultant is in the role of mediator, but still at times is asked to be an adjudicator during the articulation of professional obligations and patient values. The consultant can be an evaluator (from a layman's view) of a patient's capacity to make a particular decision. This includes evaluating the consistency of decision-making. Although psychiatrist, psychologist, or attending may have final judgment or administer objective testing to demonstrate decision making capacity, such as the MMSE or DRS, clinical ethicists provide at least a separate view point. Further, the ethics consultant may be asked to help patients, families and health care providers understand how values comport with the facts of the circumstance. Finally, the consultant may advise medical/surgical teams concerning whether it would be ethically permissible to go forward with a procedure given the varieties of uncertainties and articulated values.
As can be seen in our discussion, clinical ethics consultations for quality of life ENS present elements of acute consultation. The differences and similarities can be used to develop best practices for clinical bioethicists engaged in these types of elective consultations. Since surgical procedures are by definition more physically invasive and involve a somewhat transitory patient/surgeon relationship, they have special ethical challenges that do not focus on the processes involved in acute ethics consultation. Elective surgical procedures for patients with chronic illnesses become particularly challenging when there are significant questions about risk/benefit justification or when a patient may not have the ability to properly evaluate, or understand, significant mortality/ morbidity risks. For ENS ethics consults, the consultant frequently has fewer inherent time constraints for decision-making. This provides the opportunity to more robustly research and discuss the reasonable options and implications of any particular therapy choice. Often the ethics consultant is asked to both assist health care teams in evaluating a patient's decision making and in assisting patients in balancing tradeoffs between valued functions that could be lost or improved. Team members may disagree about expected gains and risks, and patients, often adolescents, fail to understand uncertainties and risks.
At the request of the medical/surgical team, I met with a patient who demanded an ENS procedure that potentially could be life enhancing. The specific procedure involved the placement of a neurostimulator that was part of an emerging, although FDA approved, technology. Since the patient met the minimum medical eligibility criteria for the surgery but also had a mild cognitive deficit, the medical/surgical team asked that an ethics consultant provide input about the patient's capacity to give informed consent and whether the surgery would be ethically justifiable given its cost/benefit ratio. Although the surgeon believed that there was a reasonable chance of improving the patient's physiological condition, he believed it was unlikely that the physiological improvement would provide a functional benefit, i.e. the patient would not be able care for himself any better because of the improvement. Further, the surgical risks included further functional deficits unrelated to the patient's current disability. When I spoke with the patient and his family, I asked what made the patient's life worth living. His response was that he enjoyed reminiscing, talking with friends, and walking in the neighborhood. Without these, the patient believed his life would be relatively joyless. After further conversation, it became clear that the patient did not wish to risk losing any one of these activities. However, the actual surgical risks included the possibility of losing some speech, causing memory difficulties, or making walking more difficult. Through the discussion, the patient came to realize that the surgery should not be performed because it was inconsistent with the things he most valued.
In this case, my role as an ethics consultant was both as an evaluator of the justification for surgery as well as the consistency of decision making in relation to the patient's values. Although this could have been done by one of the physicians on the care team, the ethics consultant's primary focus and skills center on unraveling and uncovering these types of values. I advised the medical team that even if the patient reasserted a desire for surgery, it would be ethically questionable to proceed. This was accompanied by a clear articulation of the need for the patient's request to be in concert with the patient's own articulated values.6
Admittedly, the resolution to this case was much clearer and simpler than many elective pre-surgery ethics consultations. In this case, the patient and family had an epiphany and decided that it would be absurd to demand the surgery, given the patient and family's values. However, if this epiphany had not occurred, the ethics consultant still would have been faced with articulating the ethical boundaries to both the patient and the health care team. This articulation would include giving a judgement and recommendation based on the context of the case. This was particularly complex given that this brain surgery asked the patient, family, and team to weigh a motor function against a cognitive risk.
In the current case, even if the patient had wanted to go forward with surgery it was the ethicist's obligation to recommend against proceeding. Based on the patient and family's articulation of the patient's values, the surgery would not have been justified. The potential physical improvement could not justify the cognitive risks. This does not suggest the ethicist should have been the arbiter of medical practice, given that benefit is defined by patient goals and values. The surgeon judging that the patient could be significantly harmed without a correspondingly significant chance of improving the patient's quality of life clarified proper course of action. The harm done by surgery could have been exactly what the patient believed to be most fundamental to a good life. As the ethicist, I was not primarily a patient advocate or patient surrogate, per se, but was interested in good ethical practice. The job as consultant was to articulate this to all parties in a clear manner that included good documentation.
Although no single course can be dictated by ethicsconsultants, they can give recommendations and guidance informed by, and entailed from, the values of all involved stakeholders. When there is genuine uncertainty, the role involves helping to demarcate the limits of appropriate practice. The consultant must carefully consider whether it is justifiable to go forward with surgery given ambiguities and uncertainties.7 When lack of consensus about surgical candidacy exists among the medical team, the consultant at times may help in evaluating the degree to which a shift of decision-making responsibility to the patient or surrogate is appropriate.
The surgeons in ENS teams often do not have the luxury of a long-term patient/physician relationship. Patients come to a center for a particular intervention and then are followed by their primary care provider or a medical specialist. The evaluation of whether a surgery is justified depends upon the surgeon's interactions with the patient, the reports from other physicians, and discussions with subspecialties. In this way, even elective surgery has significant constraints in that the surgical team has a limited number of interactions on which to base its evaluation and judgment. The uncertainties of brain surgery in itself as well as the high value placed on cognition make these decisions uniquely challenging. Given the lack of a long-term relationship in most cases, the clinical bioethicist may provide a crucial source of information and guidance.
Our discussion of ethics consultation for ENS procedures such as epilepsy resections, deep brain stimulator placement, radiosurgery, and rhizotomy, help to elucidate particular characteristics of elective surgical ethics consultations and promote discussion of the special challenges involved in balancing uncertain consequences and difficult decision-making on the part of patients and the medical team. ENS ethics consultations are not the only type of presurgery clinical ethics consultations that have been undertaken by ethicists. Many of the above distinctions could be equally applied to consultations related to the donation of solid organ transplantation, artificial reproductive therapies, and purely elective aesthetic surgeries. These types of consultations also contain significant differences to acute consultations. However, neurosurgery cases pose particularly complex decisions given the centrality of the brain in our understanding of ourselves and the lack of specific knowledge about the connection between particular brain structures and function.
Ethics consultations for ENS can assist physician teams and patients navigate these complex decisions related to brain surgeries. The function, role, and utility of a clinical ethics consultant hinge on several elements particular to, or at least intensified by, the obvious centrality of the brain. These elements include innovation/newness of a procedure, uncertainty about the boundaries of surgery candidacy, and genuine discordance of balancing values between parties. Each of these comes in degrees, but when any are significantly present, it indicates that an ethics consultant could be helpful. In general, individual physicians and patient management committees themselves have the necessary ethical tools to address ENS cases as part of standard therapy in uncomplicated patients. There need not be a regular involvement of a clinical ethicist with patients when robust informed consent can be attained, there are no significant conflicting interests, and patient harms/benefits are balanced. When there are significant uncertainties that cannot be resolved empirically, a healthcare team and/or patient could benefit from a clinical ethics consultation. A clinical ethicist may be of particular help when gains and losses of mental states (cognition or mood) must be weighed against gains or losses of physical elements (motor or pain). The skills of careful listening, articulating values, and providing evaluation of value consistency translate well from acute clinical ethics consultation. The skills developed by clinical bioethicists can be usefully applied to support physicians and patients in coming to ethically appropriate decisions. Greater emphasis should be placed on making clinical ethics consultants available for neurosurgical teams in the evaluation of challenging decisions about elective surgeries. Surgical teams should be educated on the ways in which bioethics can be of assistance. Clinical ethicists should be educated on these consultations and on paying particular attention to the differences to, as well as similarities of, other types of ethics consultations.
1 We adopt this language of acute clinical ethics consultation from the article by Gill, McPhee, and Kerridge, who described the Australian experience of clinical ethics consultation. (Gill, McPhee, and Kerridge 2004)
2 It is interesting to note that the major studies of efficacy of ethics consultations appear in end of life decisions in the critical care setting, (e.g. Schneiderman et. al. 2003)
3 The idea of using balancing of values in ethical deliberation is important. (DeMarco and Ford, 2006)
4 In particular these particular functions may be addressed through deep brain stimulation, rhizotomy, and hemispherectomy, respectively.
5 Of course of the ENS still occur while a patient is hospitalized for treatment of an exacerbation of the chronic illness or for co-morbidities. An example of this type of case may be found in a case write-up by Dudzinski. (Dudzinski 2005)
6 This example is based loosely on one of the author's (PF) cases. Details have been altered.
7 The theme of uncertainty exists in much of medicine. (Katz 1984)
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PAUL J. FORD, PHD AND JOSEPH P. DEMARCO, PHD
Paul J. Ford, PhD, is a Clinical Bioethicist at the Cleveland Clinic Foundation, and Assistant Professor of Medicine at Cleveland Clinic Lerner College of Medicine, Cleveland, Ohio, USA.
Joseph P. DeMarco, PhD, is a Professor for the Department of Philosophy at Cleveland State University, Cleveland, Ohio, USA.
Joseph P. DeMarco, PhD, is a Professor for the Department of Philosophy at Cleveland State University, Cleveland, Ohio, USA.
Paul J. Ford, PhD, is a Clinical Bioethicist at the Cleveland Clinic Foundation and Assistant Professor of Medicine at Cleveland Clinic Lerner College of Medicine, Cleveland, Ohio, USA.…
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Publication information: Article title: Brains, Ethics, and Elective Surgeries: Emerging Ethics Consultation. Contributors: Ford, Paul J. - Author, DeMarco, Joseph P. - Author. Journal title: Ethics & Medicine. Volume: 23. Issue: 1 Publication date: Spring 2007. Page number: 39+. © Bioethics Press Fall 2008. Provided by ProQuest LLC. All Rights Reserved.