This case presents several fundamental ethical issues. The first issue is the patient’s refusal of treatment (a nasogastric tube [NGT] insertion). Second, the patient’s refusal of a seemingly beneficial treatment, combined with her medical history, ultimately necessitates an assessment of her decisionmaking capacity. Third, the sister’s reluctance to participate in decisionmaking requires a discussion of appropriate surrogate decisionmakers. Finally, the main ethical component to this case is a cultural one, which should be addressed appropriately.

Pharmaceutical representatives use detailing, gift giving, and the donation of free samples as a means to gain access to and influence over physicians. In biomedical ethics, there has been an ongoing debate as to whether these practices constitute an unethical conflict of interest (COI) on the part of the physician. Underlying this debate are the following antecedent questions: (1) what counts as a conflict of interest, (2) when are such conflicts unethical, and (3) how should the ethical physician respond to conflicts? This article distinguishes between two perspectives that have been developed on these issues: a reliable performance model (PM) and a trustworthiness model (TM). PM advocates argue that a conflict of interest can only be established by demonstrating that a particular influence is undermining the reliability of the physician’s judgment, and this requires empirical evidence of negative patient outcomes. TM advocates, on the other hand, argue that because of the fiduciary nature of the patient-physician relationship, physicians have an obligation to develop and be worthy of patient trust. A COI, on this view, is a condition that undermines the warrant for patients to judge a physician as trustworthy. Although there is much that is right in the PM, it is argued that the TM does a better job of responsibly addressing the unique vulnerabilities of the patient. The TM is then applied to the practices of detailing, gift giving, and sample donation. It is concluded that these practices constitute an unethical conflict of interest.

Ms. L. is a 31-year-old female who presents to Dr. Impf, a neurosurgeon. Ms. L. has a more than 25-year history of iteratively worsening Tourette syndrome, characterized by severe motoric and postural tics and respiratory expression (grunting). Ms. L. is a rather shy, somewhat introverted woman who spends her time with her husband and a small group of friends, mostly watching cooking shows. Although she has been, and is generally, a good student, she describes her academic performance as “not stellar.” Following years of unsuccessful attempts at pharmacological therapy, Ms. L. was evaluated and accepted into an investigator-initiated research protocol (with provision for humanitarian care exemption) that Dr. Impf and her team were running for deep brain stimulation (DBS). During the neurosurgical procedure, electrodes were satisfactorily placed at bilateral subcortical targets (within the basal ganglia/striatum), and Ms. L. reported a reduced “urge to tic” and decreased frequency and severity of tics intraoperatively, immediately following surgery, during her recovery, and for 15 weeks following surgery. Then, however, the tics began to return and increased in frequency and progression, although not to the full preoperative extent. Attempts at altering DBS current parameters were not successful in reducing the severity and frequency of tics. Decreasing or terminating DBS current resulted in full rebound tics and respiratory expression, and Ms. L. finds this to be even more problematic than before (stating: “It’s like I’ve felt a new way and don’t want to go back to the other way”). Per definition, DBS did not achieve the desired medical/therapeutic outcomes.

In 2006, our team reported our experience in the use of bilateral high-frequency stimulation of the subthalamic nucleus (STN) in patients with severe levodopa-responsive forms of Parkinson’s disease (PD).1 The aim was to better understand and manage the difficulties experienced by patients who undergo neurosurgery, and by their families.

The medical team found the patient to lack medical decisionmaking capacity. However, the team felt that the patient was still able to respond appropriately to some situations. KS had displayed a consistent refusal of all medical treatments that made her uncomfortable or caused pain. During her sister’s visits, the patient would be much more receptive to eating. A meeting was planned with the patient’s sister in which the ethicist explained that the patient was not able to make her own decisions. The patient’s sister agreed that she would honor the patient’s wishes but would let the team make any decisions outside of what she knew about the patient’s preferences. The patient’s sister agreed and was willing to be at the patient’s bedside as much as she could to encourage her eating. If the patient’s condition worsened, it was discussed that the team honor the patient’s wishes and not force a feeding tube on her. The patient’s code status was also addressed, and KS’s sister felt comfortable in communicating to the team that the patient would not want to be resuscitated if medical treatments would not be able to improve her current quality of life. A natural passing away would be most amenable to the patient. The patient was discharged to her nursing home with a physician order for life-sustaining treatment (POLST) form signed by the sister documenting a do-not-resuscitate code status with comfort-focused treatments.

Implantation of deep brain stimulator (DBS) leads for Gilles de Tourette syndrome was first described by Visser-Vanderwalle et al., with a reported 70%–90% decrease in tic frequency.1 Since that time, several targets, including the basal/ganglia and striatum, have been described. The target remains experimental, and in this case, leads were implanted under an investigator-initiated research protocol. Ms. L. reported an excellent intraoperative reduction in the “urge to tic” that persisted for 15 weeks postoperatively, indicating that the leads were well placed. Furthermore, although her tic frequency has increased, it remains improved from baseline and returns to baseline when stimulation is discontinued. Although her response does not represent what her treatment team would consider the “desired medical/therapeutic outcomes,” there is no question that the patient recognizes benefit from her stimulation. In fact, she clearly states that “it’s like I’ve felt a new way and don’t want to go back to the old way.”

Mr. Hope is a 40-year-old man who has resided at a long-term care facility for the past 10 years. The resident was originally admitted to the nursing home for his inability to care for himself secondary to advanced AIDS and complications from progressive multifocal leukoencephalopathy (PML). When he initially arrived at the nursing home, Mr. Hope was able to smile and appeared to respond to some of the staff’s requests. Now, he responds by wincing when told that procedures are being performed and especially when he is told that he has to go back to the hospital. He is extremely contracted, with his arms wedded to his chest in a crossed fashion, as though he is protecting himself from blows. Mr. Hope’s family consists of a partner, his parents, and one sibling. Numerous conversations have been had with the family, and according to the facility staff, “they persist in continuing aggressive measures with the hope that the patient will wake up and walk out of the facility.” What had been frequent visits to the local hospital ER have increased substantially in the last few months, for what appear to be new infections and pneumonia. During most visits he ultimately spends a few days in the hospital to resolve his acute issues. On his most recent return to the long-term care facility, the medical staff approached the family about Mr. Hope’s code status. The family continues to insist on a full code status and that he be provided every opportunity to “live.” The staff is very concerned about Mr. Hope and his welfare. Many of the nursing staff have grown attached to him over the years, and watching him deteriorate has been distressing. They see part of their role as being his advocate and supporting him in ways that his own family has not. They express very strong reservations about performing CPR on Mr. Hope because they think it will be ineffective and they will have to break his upper extremities in order to gain access to his chest for resuscitation. The staff has contacted the ethics consultation service with the request that Mr. Hope needs protection and that his own family is not making the best decisions for him.

The case of Ms. L. provides a wonderful opportunity to highlight the underlying value commitments that often deeply influence decisionmaking in medicine and more specifically in innovative neurosurgical procedures. In order to give a fair opinion on how Dr. Impf, as clinician and researcher, should act, a much richer and thicker understanding of the actual perspectives of the stakeholders would be necessary. Because this is not available, I highlight three important elements: the terms under which the deep brain stimulation (DBS) is implanted, the proper goals of a healthcare team, and the fallacy of a “natural” or immutable self. These elements are brought together in this case by a set of unexpected effects on the patient that were not intended and that are judged and categorized differently by various stakeholders within the case. In the end, I hope that there was full transparency and agreement about obligations, responsibilities, and outcomes prior to the implantation of the DBS between the physician and patient. Further, it is important to remember that just because a result is serendipitous does not mean that it should be discounted as a proper benefit. Finally, each person authors variations on their own self that are molded by environment and social networks. If Ms. L. continues to demonstrate an ability to author a desired self, the DBS is no more inappropriate a tool than many other artifacts that are used regularly by others to mold themselves.

Here we have a case in which (1) the outcome(s) for the patient do not comport with the projected—or initially defined—outcomes of the research study, and (2) these outcomes represent cognitive and behavioral effects that are positively interpreted by the patient, but not by the patient’s immediate family. The 6Cs approach, which frames the technique or technology—and its effects—within defined considerations of domains and dimensions, can be used as part of a multistep approach to addressing issues arising from the use of neurotechnology.1 The approach recommends that the medical team consider the following domains and dimensions when engaging neuroethical analyses:

• • The capacities and limitations of current neuroscience and technology (neuroS/T), and the capacity of the patient

• • The consequences incurred by neuroS/T on recipients, families, and society in the short, intermediate, and long term

• • The character of the recipient (e.g., patterns of cognition, emotion, and behavior) affected by neuroS/T

• • The continuity of research and clinical care

• • The contexts of need and value that influence the use or nonuse of neuroS/T

• • Consent through provision of the most information possible 2

Ethical issues in long-term care settings, although having received attention in the literature, have not in our opinion received the appropriate level they require. Thus, we applaud the Cambridge Quarterly for publishing this case. We can attest to the significance of ethical issues arising in long-term care facilities, as Mr. Hope’s case is all too familiar to those practicing in these settings. What is unique about this case is that an actual ethics consult was made in a long-term care setting. We have seen very little in the published literature on the use of ethics structures in long-term care populations. Our experience is that these healthcare settings are ripe for ethical concerns and that providers, patients, families, and staff need/desire ethics resources to actively and preventively address ethical concerns. The popular press has begun to recognize the ethical issues involved in long-term care settings and the need for ethics structures. Recently, in California a nurse refused to initiate CPR for an elderly patient in a senior residence. In that case, the nurse was quoted as saying that the facility had a policy that nurses were not to start CPR for elderly patients.1 Although this case is not exactly the same as that of Mr. Hope, it highlights the need for developing robust ethics program infrastructures in long-term care settings that work toward addressing ethical issues through policy, education, and active consultation.

In its simplest interpretation, this is a case about goals of care and appropriate code status. At the outset, we must confess that we found this case to be extremely interesting—not for the novelty of the issues or its ethical complexity but because it is truly a case of the ordinary. Too often when teaching or discussing clinical ethics cases, we are distracted by the exotic and the unusual and ignore the mundane cases that every practicing clinical ethicist must be able to competently manage.1,2,3

In 2015, we published an article entitled “The Medicalization of Love,” in which we argued that both good and bad consequences could be expected to follow from love’s medicalization, depending on how the process unfolded. A flurry of commentaries followed; here we offer some preliminary thoughts in reply to the more substantial of the criticisms that were raised. We focus in particular on the nature of love itself as well as the role it plays (or should play) in our lives; we also touch on a number of practical issues concerning the likely effects of any plausible “real-life” love drugs and conclude with a call for careful regulation.

Mr. Hope’s family’s expectations and his staff’s concerns raise important issues about surrogate decisionmaking, communication regarding prognosis, and staff angst. Unfortunately, Mr. Hope himself is unable to reliably understand and communicate his preferences, especially for complex medical decisions, so the ethics consultant is left to negotiate the disagreement between his family and his healthcare providers, who presumably both believe they are acting in his best interest.