Robert D. Orr

End of life care in Duchenne muscular dystrophy

End of life care for patients with Duchenne muscular dystrophy (DMD) has become increasingly complex because of new technologies, changes in medical personnel over periods of time, emergence of home health care systems, and increasing patient and family autonomy in decision-making. In this review, we discuss the medical problems, particularly respiratory and cardiac failure, faced by DMD patients. Current concepts concerning the evaluation and options for treatment of these problems are presented as well as the ethical issues involved in the care of the DMD patient. These issues include the medical indications for treatment, patient preferences, quality-of-life issues, and contextual features related to legal, institutional, religious, geographic, cultural, social, and financial factors. We also present our experience at Loma Linda University Medical Center over the past 10 years in the development of a home mechanical ventilation program for DMD patients and an algorithm for the evaluation of these patients. Many patients with DMD do well on long-term ventilation, but some find that their quality of life is less than desirable and choose to discontinue this method of life-prolongation. Many of these new options are very expensive, making the decision to use them a difficult one. Ultimately, these are societal issues that require clear reflection on matters of resource allocation that should be performed by health care professionals, citizens, and health planners.

Evaluation of an ethics consultation service: Patient and family perspective

PURPOSE The purpose of this study was to determine whether patients and their families found ethics consultations to be helpful and whether they were satisfied with the treatment decisions that were made in those cases where ethics consultation was requested. METHODS Interviews were conducted with each patient (or surrogate) concerning whom an ethics consultation had been provided during a 1-year period at Loma Linda University Medical Center, excepting those who met exclusion criteria. The interview was done by telephone a few weeks after hospital discharge. It included multiple choice and open-ended questions. A content analysis was done on the solicited and spontaneous comments. RESULTS Eighty-six ethics consultations were provided and interviews were completed for 56 of them (65%). Fifty-seven percent of interviewees found the ethics consultation to have been helpful, and only 4% found them to have been detrimental. Interviewees were more likely to have found the consultation helpful when they perceived that it had resulted in a significant change in treatment, and were less likely to have found it helpful when the patients were more seriously ill. In addition, 77% were satisfied with the treatment decisions made, and 11% showed some degree of dissatisfaction. CONCLUSIONS Patients and families found ethics consultation provided by clinical ethicists at Loma Linda University Medical Center to be helpful in a majority of instances, and rarely found them detrimental. Based on an analysis of their comments, we believe ethics consultations were perceived as helpful in 7 ways: increased clinical clarity, increased moral or legal clarity, motivation to do what they believe is right, facilitation of the process of decision-making, implementation of a decision, interpretation of technical language, and consolation and support.

When Too Much Is Not Enough

Introducing a new hobby for other people may inspire them to join with you. Reading, as one of mutual hobby, is considered as the very easy hobby to do. But, many people are not interested in this hobby. Why? Boring is the reason of why. However, this feel actually can deal with the book and time of you reading. Yeah, one that we will refer to break the boredom in reading is choosing too much is not enough as the reading material.

Really, most SINCERELY dead: Policy and procedure in the diagnosis of death by neurologic criteria

As Coroner, I must aver I thoroughly examined her And she’s not only MERELY dead, She’s really, most SINCERELY dead. —Coroner, after examining the remains of the Wicked Witch of the East. The Coroner reassures the social representative, the mayor, and the legal, ethical, and spiritual representatives in the Land of Oz. From the film The Wizard of Oz , 1939. Few duties of the physician are more difficult than explaining to a family that a loved one has died. This task becomes particularly delicate when death is diagnosed by neurologic criteria. The Council on Ethical Affairs of the California Medical Association (CEA) has developed this topic into a policy and procedure that detail a practical approach to address ethical and social issues encountered at the bedside when physicians diagnose death (see supplementary web material available at www.neurology.org).1 In this article, some of the authors of that policy expand on the section concerning behavior of professional staff toward the family of an individual whose cardiopulmonary support will be withdrawn after a diagnosis of neurologic death. We recommend a more direct conversation with family members than sometimes occurs and offer a model for this sensitive exchange. We organize our discussion around a scene from the 1939 movie The Wizard of Oz because this film contains a memorable and succinct exposition of the elements most reassuring in and essential to a declaration of death. In using this example, we do not mean in any way to diminish the anguish, responsibility, and mystery associated with the passing of loved ones. This scene begins after Dorothy and her house have fallen on the Wicked Witch of the East2: MAYOR (singing): As mayor of the Munchkin City In the county of the Land of Oz, I welcome you most regally. BARRISTER (singing): …

The moral status of the embryonal stem cell: inherent or imputed?

will remain vulnerable to the perception that it is bloodless and, to some, heartless as well. In particular, the element of risk involved in making one’s personal values and dispositions amenable to change through reasoned reoection is easily exploited by those who proclaim that there is a profound wisdom in the habits of mind and language that are being criticized. Fear and varying degrees of mistrust are exploited by warnings not to be beguiled by the arguments of analytical philosophers and their power to boil down clear moral boundaries and distinctions into an unsustainably thin gruel (Kass 1997). This is not an argumentative strategy that challenges proposed distinctions on their merits—it is a strategic move aimed at strengthening the habits of mind and language that are being questioned before the exchange of reasons has begun. Even this, however, is not a merely strategic move; it is also an exhortation to conserve a certain order in one’s values and commitments against emendations that are represented as restricting or weakening them. The challenge such strategic moves pose to bioethicists is to make palpable both the sources of our arguments in commitments that our interlocutors share and the way they extend and reorganize those commitments into something others can be proud to share and to stand for. In the end, I fear that conversation is not the best model for this exchange of reasons and that we must work to communicate arguments that are worthy of trust even under circumstances of civic uncertainty. I am optimistic, however, about the prospects of a bioethics that has developed a greater understanding of the complex social, intellectual, and affective dynamics that inouence the orientation of persons to our best moral arguments. I am also optimistic about the personal turn displayed by Green and Maienschein in which the contemplation of normative reasons is situated in the broader life of a person with whom others can identify sympathetically, and, perhaps, trust as a partner in a kind of inquiry that will have to be carried out under less than harmonious civic circumstances.

The Role of Christian Belief in Public Policy

It seems intuitive to the believer that God intended through instruction in the Law to define morality, intended to lead humankind to “the right and the good.” Further, Gods love for humankind, exemplified by the incarnation, atonement and teachings of Jesus, and empowered by the Holy Spirit, should lead to a better world. Indeed, the Christian worldview is a coherent and valid way to look at bioethical issues in public policy and at the bedside. Yet, as this paper explores, in a pluralistic society such as the United States, it is neither possible nor desirable for Christians to try to force their views on others. Still, it is obligatory for Christians to stand up and articulate their views in the public square. We should try to persuade others using either prudential or moral arguments. While we must be willing to live with “the will of the people,” at the same time, we must not be intimidated into accepting the position that our voice is not valid because it has a religious basis.

Methods of Conflict Resolution at the Bedside

(2001). Methods of Conflict Resolution at the Bedside. The American Journal of Bioethics: Vol. 1, No. 4, pp. 45-46.

Reanimation: overcoming objections and obstacles to organ retrieval from non-heart-beating cadaver donors.

Interest in the retrieval of organs from non-heart-beating cadaver donors has been rekindled by the success of transplantation of solid organs and the insufficient supply of donor organs currently obtained from heart-beating cadaver donors. There are currently two retrieval techniques being evaluated, the in situ cold perfusion approach and the controlled death approach. Both, however, raise ethical concerns. Reanimation is a new method which has been used successfully in animals. We believe this new approach overcomes the ethical objections raised to these other methods.

The Family Physician And Ethics At The Bedside

Background: Clinical ethics and ethics committees are a real phenomenon in medicine and play an important role in improving patient care by enhancing the decision-making process between patients and their physicians and thus strengthening this special bond. This article reviews the evolving qualifications of the clinical ethics consultant and compares them with the traditional knowledge, skills, attitudes, and values of the family physician. Methods: Material for this comparison was gathered from a review of the pertinent literature of the past 10 years on the development of clinical ethics and the addition of ethics to the medical curriculum and from personal observations and literature commentary on family practice as a distinct entity. Results and Conclusions: Family physicians are uniquely qualified to serve as ethics consultants, particularly with additional training in moral philosophy and health care law. It is hoped that family physicians will become increasingly involved in this growing field to serve as future teachers, researchers, institutional leaders, and policy makers in clinical ethics. More importantly, faculty role models are needed to train family practice residents in ethical decision making at the bedsides of their patients.

Relief Organizations with Counseling Restrictions

Professional, practical, clinical and cultural obligations should guide decision making when a funding agency restricts the types of counseling and advice it allows medical professionals to dispense. Virtual Mentor is a monthly bioethics journal published by the American Medical Association.