Thomas R. Kerkhoff

‘I Don’t Want to Live This Way, Doc. Please Take Me Off the Ventilator and Let Me Die.'

One of the most difficult situations that health care professionals can face is a request to withdraw life-sustaining treatment, particularly when the person making the request has a new-onset life-altering, but not fatal, disabling condition. The story of Dax Cowart has underscored this issue into the hearts and minds of recent generations of many medical students. In 1973, Mr Cowart, a 26-year-old Air Force reserve fighter pilot, sustained extensive total body surface area burns from a gas explosion, which killed his father. While badly injured and lying on the side of the road, Mr Cowart asked the first man who got to him to get him a gun, that he was a “dead man” anyway. Over the subsequent year of painful treatments, Mr Cowart repeatedly requested to forego treatment and be allowed to die. In 1974, with the help of Robert B. White, MD, the psychiatrist consulted to evaluate Mr Cowart’s decision-making capacity, a film, Please Let Me Die, was made, which addressed the difficult issues raised by Mr Cowart’s story. A decade later, an updated and enhanced version, Dax’s Case, was released [1]. Both films have been used extensively in teaching medical ethics classes in medical schools. Stories such as Dax’s have brought into sharp focus the double-edged nature of modern medical technologies, generating a new archetypal narrative pitting patient autonomy against beneficence and medical paternalism. Iterations of the genre flourished in the 1970s and 1980s, with legal cases, and with fictional and made-for-television dramas peppering the airways and headline news. Who can forget the gut-wrenching performance of Richard Dreyfuss, as sculptor Ken Harrison, in Whose Life Is It Anyway?, the Tony award winning play turned into movie [2]. Cocktail party conversations and family dinner table debates percolated. Did Harrison, who acquired quadriplegia in a motor vehicle crash, have a right to refuse medical treatment? What is the difference between refusing medical treatment and committing suicide? What are the roles and obligations of the health care team? A number of notable court cases kept these issues in the public eye in the 1980s and early 1990s, helped by the coverage of popular news sources such as 60 Minutes and People Magazine (eg, Elizabeth Bouvia, Kenneth Bergstedt, David Rivlin, and Larry McAfee, the latter’s life story was also made into a television movie, The Switch, in 1993) [3]. As recently as 2004, this theme again captured national consciousness in the Academy Award winning movie, Million Dollar Baby, with Hilary Swank playing Maggie Fitzgerald, an up-and-coming boxer rendered quadriplegic and ventilator dependent by an underhanded blow in a boxing match [4]. Then there was the media circus that surrounded the more than 100 assisted suicides of Jack Kevorkian, his subsequent trials, which finally ended in 1999 with a conviction after 60 Minutes televised the taped active euthanasia by lethal injection of a patient with amyotrophic lateral sclerosis, Thomas Youk. One could argue that there really is not anything more to discuss here. The courts, bioethicists, and the medical profession are in consensus, that is, that the competent patient has the right to refuse treatment, even life-sustaining treatment. But there in lies the rub, when is someone truly competent? Most would agree that Dax Cowart was not competent when he asked for a gun immediately after his injury. He was likely in a state of biologic and emotional shock. Later he was on high doses of medication and sedatives, and furthermore lacked adequate information about his condition and treatment options. The more difficult question is, when did he regain his competency (or more precisely, his decision-making capacity) for this particular decision?

The APA Ethical Principles as a foundational competency: application to rehabilitation psychology.

OVERVIEW Competence is a core component of ethical conduct as reflected in its addition as an ethical standard in the 2002 APA Ethics Code. Successfully operationalizing and assessing competence provides psychologists a means to improve education and training, advance the field of practice, and create a framework for accountability to the public. Much of the recent competency discussion has been in response to a proposed Cube Model, with its three axes being foundational competencies (practice building blocks, such as scientific knowledge, ethical standards), functional competencies (attributes of providing services, such as assessment, intervention), and developmental progression (acquiring increasing competence over the course of ones education and career). Ethics is included on the foundational competency axis and has been operationalized to the extent that subcomponents and benchmarks have been promulgated. The competency model as proposed faces multiple challenges, including gaining consensus regarding its components, addressing reliable and valid assessment over time, and creating a culture of acceptance. We propose the Ethical Principles as an alternative framework for conceptualizing ethics as a foundational competency given the Ethics Code is already time tested and includes a serial review process for broad discipline input and adaptability. We apply the Ethical Principles as foundational components to rehabilitation psychology training at internship, postdoctoral, and specialty levels to illustrate the model. CONCLUSION Rehabilitation psychology should engage in the competency movement at the predoctoral and postdoctoral level. The application of the Ethical Principles as a foundational competency to rehabilitation psychology represents a first step in this dialog.

Informed Consent and Phase 1 Research in Spinal Cord Injury

K P S R R B d n D N eron, a California-based for-profit biotechnology company, plans to launch a multicenter hase 1 study for human embryonic stem cell therapy (GRNOPC1) as soon as the Food and rug Administration (FDA) releases its approval for the Investigational New Drug applicaion [1]. The study will seek to enroll newly injured patients with “complete” thoracic (ASIA ) spinal cord injuries (SCIs; T3-T10) who will agree to have GRNOPC1 surgically injected nto the lesion area 7 to 14 days after injury. Geron is not alone and will undoubtedly be oined by other research companies during the next decade who are similarly racing to evelop and test treatment interventions for SCI. Thus, it is imperative that rehabilitation rofessionals become proficient with the ethics of phase 1 research studies. To review, the intent of phase 1 research is to delimit the safety, pharmacodynamics, and oxicity of a new drug or intervention. To place in context, phase 2 research focuses on efficacy, osing, and continued safety monitoring; phase 3 focuses on larger scale, usually multicenter esting for efficacy; and phase 4 is for postmarketing safety monitoring [2]. Although a benefit to n individual patient is always desired, it is not the purpose or stated intention of phase 1 esearch. This definition is important because it raises fundamental questions about the inormed consent process for research in phase 1 studies. Some of the most elegant work on this ssue has been with oncology patients [3] who have exhausted all therapeutic treatment options nd may still be desperate for treatment alternatives and desire their enrollment in phase 1 esearch. (The reasons for participation vary, and hope of benefit may not always be the case. ome subjects may choose to do so for altruistic reasons and contribute to medical research so hat others in the future might benefit.) For phase 1 research to proceed, the investigators most etition the FDA for an Investigational New Drug application and show that the intervention has vidence of benefit (usually through animal studies), is believed to be safe, and the potential enefit of the treatment outweighs the risk of the trials. In addition to issues of informed consent, a related but more specific concern is that herapeutic misconception may occur. Therapeutic misconception is the belief or hope, on he part of the subject, that direct benefit will accrue when it is neither expected nor the ntent of the research [4]. Even when the subject has been explicitly informed otherwise, herapeutic misconception can and does occur. The psychological reasons posited are omplex. Social scientists who study informed consent in phase 1 research have found that ome subjects still believe, even when told otherwise, that doctors would not recommend an ntervention that is likely to cause harm and unlikely to cause direct benefit. Those in the physical medicine and rehabilitation field will soon be facing these issues ith phase 1 research in patients with SCI. For newly injured patients, the question arises of hether it is possible to obtain truly informed consent for phase 1 research, particularly so arly after onset of the SCI. The concerns about informed consent are laid out by Dr Frederic ilbert in an excerpt of his commentary at the Bioethics Forum website:

Managing Challenging Behavior in an Inpatient Setting

This chapter offers helpful information regarding effective management of acute maladaptive behavioral sequelae of disabling injury and illness. We address behavioral aspects of and intervention strategies for focal and generalized cognitive impairment, emotional adjustment to disability in the presence or absence of pre-existing mental health history, and emotional reactions related to disability, as well as provide practical tips regarding clinical management of challenging behavior.

Informational Feedback in Training Behavioral Coders

Videotapes of childrens behavior in a natural setting were used to train 24 Ss to use a coding system. Ss were randomly assigned to training under conditions of immediate feedback, delayed feedback, and no feedback. Analyses of Ss responses to a criterion videotape following training showed that feedback was superior to no feedback. The superiority of immediate feedback to delayed feedback was shown in evaluating performance during training but not in comparing criterion responses after training. These results were discussed and suggestions for methodology in future studies were offered.