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Biomedical subjects

J J Fins

Publications and source records attributed to J J Fins.

At least 19 recordsLinked to original sources
PubMed2003

Gene therapy ethics and haemophilia: an inevitable therapeutic future?

Haemophilia was recognized early on as an ideal candidate for a gene transfer approach to therapy. In the past decade, gene transfer experimentation in the haemophilias has indeed played an integral role in furthering the science in the global field of gene therapy. However, these expectations have placed haemophilia gene transfer researchers under pressure to succeed in a scientific domain in which successes are infrequent and progress is necessarily slow. These same expectations have also fueled the perception of gene therapy as the inevitable therapeutic goal for the youngest children with haemophilia. In this paper, we will discuss the ethical implications of this perception in light of anticipated benefits, acceptable risk, perceived consumer need and the unknown cost of this intervention. A framework for the future study and therapeutic implementation of gene transfer technology in this specific population is proposed. Public debate on this issue that includes the voices of the intended beneficiaries, especially the parents of the youngest children with haemophilia and the children themselves, is encouraged.

Ethics, Clinical↗
PubMed2001

Communication in intensive care settings: the challenge of futility disputes.

In intensive care settings, suboptimal communication can erode family trust and fuel so-called "futility" disputes. Presenting a teaching case used by >225 hospitals participating in the Decisions Near the End-of-Life program, we identify critical communication challenges and opportunities. We emphasize that good communication requires not only clear and sensitive language but also clinician self-awareness, psychological insight, and an institutional culture that promotes good communication with families. The article concludes with two examples of steps institutions can take to foster good communication between families and healthcare professionals.

Aged↗
PubMed2000

Assisted suicide compared with refusal of treatment: a valid distinction? University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel.

The continuing debate over the deeply controversial issue of physician-assisted suicide has been complicated by confusion about how this practice resembles or differs from refusal of life-sustaining treatment. Perspectives on ethics and policy hinge on the contested issue of whether a valid distinction can be made between assisted suicide and withdrawal of treatment. This paper uses three illustrative cases to examine leading arguments for and against the recognition of a fundamental distinction between these practices. The first case involves assisted suicide by ingestion of prescribed barbiturates, the second involves withdrawal of artificial nutrition and hydration, and the third involves a decision to stop eating and drinking. On theoretical and practical grounds, this paper defends the position that there is a valid distinction between assisted suicide and refusal of treatment.

Adult↗
PubMed2000

Clinical pragmatism, ethics consultation, and the elderly patient.

This article describes a process of moral problem solving for medicine termed clinical pragmatism. A structured and disciplined method of addressing ethical problems in medical practice that clinicians will find useful in their daily routines is provided. After outlining the method of clinical pragmatism, the authors illustrate its use in a case involving an older patient refusing medical treatment and conclude with comments on the importance of the process in ethics case consultation.

Aged↗
PubMed2000

Gaining insight into the care of hospitalized dying patients: an interpretative narrative analysis.

Narrative ethics is a useful tool for gaining insight into the care of hospitalized dying patients. We used narrative analysis to interpret the medical records of 200 adult deaths at our institution. Prominent subjects which emergedfrom this review include documentation of care; relationships between patients, families and clinicians; and the influence of time, uncertainty, ambiguity, resource allocation, and spirituality on the course of care. Research on narratives can help script more empathic and compassionate care of the dying by demonstrating that every death is a story waiting to be told.

Critical Care↗
PubMed2000

A proposed ethical framework for interventional cognitive neuroscience: a consideration of deep brain stimulation in impaired consciousness.

Advances in neuromodulation techniques offer the promise of new therapeutic interventions for patients with neuropsychiatric maladies. Several complex social, ethical and policy issues will attend developments in this area. In this paper an ethical framework for clinical research in interventional cognitive neuroscience is advanced. Deep brain stimulation in traumatic brain injury is considered as a paradigm case to examine ethical obligations in human subject research. These include balancing access to novel therapies versus protection of vulnerable study populations, rational evaluation of study design and research strategies, informed consent, and the importance of achieving societal consensus for this line of scientific inquiry.

Brain↗
PubMed2000

An approach to educating residents about palliative care and clinical ethics.

Despite interest in end-of-life educational efforts, attitudinal barriers still thwart the integration of palliative care into medical education. The authors present their experience introducing a graduate medical education program in ethics and palliative care at New York Presbyterian Hospital and Weill Medical College of Cornell University. Through this initiative the authors sought to enhance residents' knowledge, skills, and attitudes needed for effective palliative care. Residents were targeted because they are in a unique stage of their training; while they have mastered many basic clinical skills they remain open to educational experiences that might alter their lifelong practice patterns. Course material was based upon the residents' experiences. Using their case histories interested them as adult learners and validated the importance of the subject matter. Seminar themes included professionalism, the physician facing death, ethical, legal, cross-cultural, and religious issues at the end of life, and pain and symptom management. The program provided a valuable educational forum for residents to give voice to their reflections and receive supportive feedback from peers and faculty. Building upon the residents' own clinical experiences with end-of-life care effectively engaged their interest and provided much-needed instruction in this evolving area of study.

Adult↗
PubMed2000

Development of a palliative education assessment tool for medical student education.

Studies assessing palliative care education in U.S. medical schools reveal that little attention is paid to this topic. Although core competencies have been defined, few schools have implemented effective means to incorporate formal palliative care education into undergraduate curricula. To promote reform, each school needs to conduct a thorough assessment to identify palliative care content throughout the four-year curriculum. The authors developed an innovative assessment instrument to facilitate curricular mapping of palliative care education. The Palliative Education Assessment Tool (PEAT) comprises seven palliative care domains: palliative medicine, pain, neuropsychologic symptoms, other symptoms, ethics and the law, patient/family/nonclinical caregiver perspectives on end-of-life care, and clinical communication skills. Each domain details specific curricular objectives of knowledge, skills, and attitudes. Designed as a flexible self-assessment tool, PEAT helps determine the existence of palliative care education, which usually is found in various formats throughout a medical school's curriculum and thus sometimes "hidden." PEAT enables educators to describe a specific, multidimensional aspect of the curriculum and use the information for strategic planning, educational reform, and evaluation. The curricular reform implications of such an instrument are broader than palliative care assessment. A modified version of PEAT can be used to assess systematically other topics that are taught in various formats in the curriculum and to develop collaborative approaches to fulfilling the educational objectives of those topics.

Education, Medical↗
PubMed1999

End-of-life decision-making in the hospital: current practice and future prospects.

Chart review of patients who died in the hospital was used to describe the pattern of end-of-life decision-making and care for hospitalized dying patients and to propose a structured process of assessing the suitability of patients for palliative care. The setting was a large urban academic medical center, and the sample comprised 200 of 205 consecutive adult deaths during the first 4 months of 1996. The main outcome measures were identification of the patient as dying, do-not-resuscitate (DNR) orders, and comfort care plans. Charts of 72% of the patients had evidence that they were considered dying. DNR orders were in place for 77% of all the patients, and 46% had comfort care plans. Presence of a health care proxy was significantly associated with DNR orders and comfort care plans (P < 0.001). On average, comfort care plans were put in place 15 days after admission, as compared with an overall mean length of stay of 17 days. Substantial proportions of patients with comfort care plans continued to receive antibiotics (41%) and blood draws (30%). Only 13% of the patients on mechanical ventilation and 19% of those on artificial nutrition and hydration underwent withdrawal of these interventions prior to death. These findings suggest opportunities and challenges for improving practice patterns for hospitalized dying patients. We recommend several measurable objectives for evaluating end-of-life decision-making and care and propose the development of a goals of care assessment tool to guide appropriate transitions from life-sustaining treatment to comfort care and plan palliative services.

Adult↗
PubMed1999

Incorporating palliative care into critical care education: principles, challenges, and opportunities.

OBJECTIVE: To identify the goals and methods for medical education about end-of-life care in the intensive care unit (ICU). DATA SOURCES AND STUDY SELECTION: A status report on palliative care, a summary report of recent research on palliative care education, articles in the medical literature on end-of-life care and critical care, and expert opinion were considered. DATA EXTRACTION: A working group, including specialists in critical care, palliative care, medical ethics, consumer advocacy, and communications, was convened at the "Medical Education for Care Near the End of Life National Consensus Conference." A modified nominal group process was used to develop a consensus. DATA SYNTHESIS: In the ICU, life and death decisions are often made in a crisis mode or in the face of uncertainty, and may necessitate the withholding and withdrawal of life-supporting technologies. Because critical illness often diminishes the capacity of patients to make decisions, clinicians must often make decisions in conjunction with surrogates, rather than with patients. Discontinuity of care can threaten trusting relationships, and cultural diversity can have a particularly powerful impact on choices for care. In the face of these realities, it is possible and appropriate to give compassionate palliative care to dying patients and their families in the ICU. CONCLUSIONS: Teaching care of the dying in the ICU should emphasize the following: a) the goals of care should guide the use of technology; b) understanding of prognostication and treatment withholding and withdrawal is essential; c) effective communication and trusting relationships are crucial to good care; d) cultural differences should be acknowledged and respected; and e) the delivery of excellent palliative care is appropriate and necessary when patients die in the ICU.

Attitude to Death↗