Clinical Ethics Consultations and the Necessity of NOT Meeting Expectations: I Never Promised You a Rose Garden.

Clinical ethics consultants (CECs) work in complex environments ripe with multiple types of expectations. Significantly, some are due to the perspectives of professional colleagues and the patients and families with whom CECs consult and concern how CECs can, do, or should function, thus adding to the moral complexity faced by CECs in those particular circumstances. We outline six such common expectations: Ethics Police, Ethics Equalizer, Ethics Superhero, Ethics Expediter, Ethics Healer or Ameliorator, and, finally, Ethics Expert. Framed by examples of requests for ethics consultation that illustrate each kind, along with brief descriptions, we argue that while these expectations ought to be resisted for clear and practical reasons, they also create opportunities for CECs to articulate, educate, and ultimately be responsible to the professional demands of clinical ethics work. Recognizing, acknowledging, and at times resisting those expectations thus become key activities and responsibilities in the performance of ethics consultation.

Death, Devices, and Double Effect.

Along with the growing utilization of the total artificial heart (TAH) comes a new set of ethical issues that have, surprisingly, received little attention in the literature: (1) How does one apply the criteria of irreversible cessation of circulatory function (a core concept in the Uniformed Determination of Death Act) given that a TAH rarely stops functioning on its own? (2) Can one appeal to the doctrine of double effect as an ethical rationale for turning off a TAH given that this action directly results in death? And, (3) On what ethical grounds can a physician turn off a TAH in view of the fact that either the intent of such an action or the outcome is always, and necessarily, death? The aim of this article is not to answer these questions but to highlight why these questions must be explored in some depth given the growing use of TAH technology.

Lessons learned from nurses' requests for ethics consultation: Why did they call and what did they value?

BACKGROUND: An ongoing challenge for clinical ethics consultation is learning how colleagues in other healthcare professions understand, make use of, and evaluate clinical ethics consultation services. AIM: In pursuing such knowledge as part of clinical ethics consultation service quality assessment, clinical ethics consultation services can learn important information about the issues and concerns that prompt colleagues to request ethics consultation. Such knowledge allows for greater outreach, education, and responsiveness by clinical ethics consultation services to the concerns of clinician colleagues. DESIGN: This quality assessment project explores consultation requests and follow-up questionnaire responses voluntarily submitted from nurses who requested clinical ethics consultation. We present qualitative data analyzed using content analysis and constant comparison methods to identify key concerns that prompted requests as well as common themes among nurse requestors' evaluations of what was most important in clinical ethics consultations. Participants and context: A total of 41 nurses requesting clinical ethics consultation and 15 who returned the follow-up questionnaire. Ethical considerations: Our Office of Research Compliance and Quality Improvement determined that our project was not considered human subjects research and so did not require institutional review board approval or exemption. However, efforts were made to avoid any sense of coercion and all data were de-identified prior to analysis. FINDINGS: Our analysis revealed six main categories of issues that prompted nurses' requests for ethics consultation, as well as unifying themes around nurses' experiences, advocacy, and family support while caring for patients in the intersections of patients, families, and physicians. DISCUSSION: The insights gained from analyzing nurses' requests for and responses to clinical ethics consultation may serve as a resource for clinical ethics consultation services seeking to identify, respond to, and educate regarding issues of importance to nurse colleagues and may be a resource for nursing administrators and leadership seeking to identify and address common ethical issues nurses face. CONCLUSION: Ongoing work on clinical ethics consultation service quality improvement and engagement with our nursing colleagues about their concerns prompting-and their evaluations of-clinical ethics consultation are necessary.

An Actual Advance in Advance Directives: Moving from Patient Choices to Patient Voices in Advance Care Planning.

Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive (AD) into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected "choices" about specific interventions which either revolve around broad themes (e.g., "prolong life / do not prolong life") or whether or not to utilize particular interventions (e.g., CPR, mechanical ventilation), both of which about most laypersons know little and, more importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility-creating a burden for which most patients are unprepared-and hence reducing healthcare providers' responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients (articulating their goals, values, and preferences) and physicians (using medical expertise to reach patient goals) for enabling appropriate plans of care. This includes re-structuring our AD form to more accurately represent patient's values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue-or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity.

Discovering What Matters: Interrogating Clinician Responses to Ethics Consultation.

Against the background assumptions that (a) knowing what clinical ethics consultation represents to those with whom ethics consultants work most closely is a necessary component for being responsible in the practice of ethics consultation, and (b) the complexities of soliciting and understanding colleague evaluations require another inherent responsibility for the methods by which ethics consultations are evaluated, in this article we report our experience soliciting, analyzing, and trying to understand retrospective evaluations of our Clinical Ethics Consultation Service. These evaluations were collected through a quality assessment effort at our institution. Drawing from the qualitative elements of our survey instrument, we describe unexpected variations among the requests for ethics consultation and the retrospective reports from those colleagues making the requests. Focusing on just one aspect - the reason for request - raised several core questions about how we should evaluate those retrospective reports, what could be learned from the differences that we were now encountering, and what we could learn about the process of evaluating our practices. Working through these questions, we suggest several issues to consider in ongoing efforts to describe and evaluate clinical ethics consultation: the role of time and memory in evaluating retrospective evaluations, the importance of attending to the language of moral shift or disruption with which our colleagues describe their experiences, and how to understand the role of ethics consultation in creating 'moral space' (a la Margaret Urban Walker's conception) for colleagues to process their moral experiences.

Just a Collection of Recollections: Clinical Ethics Consultation and the Interplay of Evaluating Voices.

Despite increased attention to the question of how best to evaluate clinical ethics consultations and emphasis on external evaluation (Hastings Center Report, ASBH Quality Attestation Process), there has been little sustained focus on how we, as clinicians, make sense of and learn from our own experiences in the midst of any one consultation. Questions of how we evaluate the request for, unfolding of, and conclusion of any specific ethics consultation are often overlooked, along with the underlying question of whether it is possible to give an accurate account of clinical ethics consultants' experience as experienced by ethics consultants. Before the challenge of submitting one's accounts or case reports for review and evaluation from others (at one's local institution or in the broader field), there is an underlying challenge of understanding and evaluating our own accounts. To highlight this crucial and deeply challenging dimension of actual clinical ethics practice, we present an account of a complex consultation, explicitly constructed to engage the reader in the unfolding experience of the consultant by emphasizing the multiple perspectives unfolding within the consultant's experience. Written in script format, the three perspectives presented-prototypical clinically descriptive account; didactically reflective and self-evidentiary account often seen in journal presentations; highly self-critical reflective account emphasizing uncertainties inherent to clinical ethics practice-reflect different manners for responding to the ways actual clinical involvement in ethics consultation practice accentuates and refocuses the question of how to understand and evaluate our own work, as well as that of our colleagues.

Subthalamic nucleus deep brain stimulation in early stage Parkinson's disease.

BACKGROUND: Deep brain stimulation (DBS) is an effective and approved therapy for advanced Parkinson's disease (PD), and a recent study suggests efficacy in mid-stage disease. This manuscript reports the results of a pilot trial investigating preliminary safety and tolerability of DBS in early PD. METHODS: Thirty subjects with idiopathic PD (Hoehn & Yahr Stage II off medication), age 50-75, on medication ≥6 months but ≤4 years, and without motor fluctuations or dyskinesias were randomized to optimal drug therapy (ODT) (n = 15) or DBS + ODT (n = 15). Co-primary endpoints were the time to reach a 4-point worsening from baseline in the UPDRS-III off therapy and the change in levodopa equivalent daily dose from baseline to 24 months. RESULTS: As hypothesized, the mean UPDRS total and part III scores were not significantly different on or off therapy at 24 months. Medication requirements in the DBS + ODT group were lower at all time points with a maximal difference at 18 months. With a few exceptions, differences in neuropsychological functioning were not significant. Two subjects in the DBS + ODT group suffered serious adverse events; remaining adverse events were mild or transient. CONCLUSIONS: This study demonstrates that subjects with early stage PD will enroll in and complete trials testing invasive therapies and provides preliminary evidence that DBS is well tolerated in early PD. The results of this trial provide the data necessary to design a large, phase III, double-blind, multicenter trial investigating the safety and efficacy of DBS in early PD.

Potential subjects' responses to an ethics questionnaire in a phase I study of deep brain stimulation in early Parkinson's disease.

BACKGROUND: Central to ethically justified clinical trial design is the need for an informed consent process responsive to how potential subjects actually comprehend study participation, especially study goals, risks, and potential benefits. This will be particularly challenging when studying deep brain stimulation and whether it impedes symptom progression in Parkinson's disease, since potential subjects will be Parkinson's patients for whom deep brain stimulation will likely have therapeutic value in the future as their disease progresses. METHOD: As part of an expanded informed consent process for a pilot Phase I study of deep brain stimulation in early stage Parkinson's disease, an ethics questionnaire composed of 13 open-ended questions was distributed to potential subjects. The questionnaire was designed to guide potential subjects in thinking about their potential participation. RESULTS: While the purpose of the study (safety and tolerability) was extensively presented during the informed consent process, in returned responses 70 percent focused on effectiveness and 91 percent included personal benefit as poten- tial benefit from enrolling. However, 91 percent also indicated helping other Parkinson's patients as motivation when considering whether or not to enroll. CONCLUSIONS: This combination of responses highlights two issues to which investigators need to pay close attention in future trial designs: (1) how, and in what ways, informed consent processes reinforce potential subjects' preconceived understandings of benefit, and (2) that potential subjects see themselves as part of a community of Parkinson's sufferers with responsibilities extending beyond self-interest. More importantly, it invites speculation that a different paradigm for informed consent may be needed.

Deep brain stimulation for early-stage Parkinson's disease: an illustrative case.

OBJECTIVES: Subthalamic nucleus (STN) deep brain stimulation (DBS) is an effective intervention in advanced Parkinson's disease (PD), but its efficacy and safety in early PD are unknown. We are conducting a randomized pilot trial investigating DBS in early PD. This report describes one participant who received bilateral STN-DBS. MATERIALS AND METHODS: Thirty subjects have been randomized to either optimal drug therapy (ODT) or DBS + ODT. Microelectrode recordings from the STN and substantia nigra are collected at implantation. The Unified Parkinson's Disease Rating Scale Motor Subscale (UPDRS-III) is administered in the ON and OFF states semi-annually and neuropsychological function and quality of life are assessed annually. We describe a 54-year-old man with a two-year history of PD who was randomized to DBS + ODT and followed for two years. RESULTS: The subject showed a lower STN to substantia nigra ratio of neuronal activity than advanced PD patients, and higher firing rate than non-PD patients. The subject's total UPDRS and UPDRS-III scores improved during the two-year follow-up, while his OFF UPDRS-III score and levodopa equivalent daily dose increased. Quality of life, verbal fluency, and verbal learning improved. He did not experience any serious adverse events. CONCLUSIONS: This report details the first successful application of bilateral STN-DBS for early-stage PD during a clinical trial.

Responsibility after the apparent end: 'following-up' in clinical ethics consultation.

Clinical ethics literature typically presents ethics consultations as having clear beginnings and clear ends. Experience in actual clinical ethics practice, however, reflects a different characterization, particularly when the moral experiences of ethics consultants are included in the discussion. In response, this article emphasizes listening and learning about moral experience as core activities associated with clinical ethics consultation. This focus reveals that responsibility in actual clinical ethics practice is generated within the moral scope of an ethics consultant's activities as she or he encounters the unique and specific features that emerge from interactions with a specific patient, or family, or practitioner within a given situation and over time. A long-form narrative about an ethics consultant's interactions is interwoven with a more didactic discussion to highlight the theme of responsibility and to probe questions that arise regarding follow-up within the practice of clinical ethics consultation.

Maximal care considerations when treating patients with end-stage heart failure: ethical and procedural quandaries in management of the very sick.

Deciding who should receive maximal technological treatment options and who should not represents an ethical, moral, psychological and medico-legal challenge for health care providers. Especially in patients with chronic heart failure, the ethical and medico-legal issues associated with providing maximal possible care or withholding the same are coming to the forefront. Procedures, such as cardiac transplantation, have strict criteria for adequate candidacy. These criteria for subsequent listing are based on clinical outcome data but also reflect the reality of organ shortage. Lack of compliance and non-adherence to lifestyle changes represent relative contraindications to heart transplant candidacy. Mechanical circulatory support therapy using ventricular assist devices is becoming a more prominent therapeutic option for patients with end-stage heart failure who are not candidates for transplantation, which also requires strict criteria to enable beneficial outcome for the patient. Physicians need to critically reflect that in many cases, the patient's best interest might not always mean pursuing maximal technological options available. This article reflects on the multitude of critical issues that health care providers have to face while caring for patients with end-stage heart failure.