Kathy Kinlaw

Policies on Donation After Cardiac Death at Children's Hospitals: A Mixed-Methods Analysis of Variation

CONTEXT Although authoritative bodies have promulgated guidelines for donation after cardiac death (DCD) and the Joint Commission requires hospitals to address DCD, little is known about actual hospital policies. OBJECTIVE To characterize DCD policies in childrens hospitals and evaluate variation among policies. DESIGN, SETTING, AND PARTICIPANTS Mixed-methods analysis of policies collected between November 2007 and January 2008 from hospitals in the United States, Puerto Rico, and Canada in 2 membership categories of the National Association of Childrens Hospitals and Related Institutions. MAIN OUTCOME MEASURES Status of DCD policy development and content of the policies based on coding categories developed in part from authoritative statements. RESULTS One hundred five of 124 eligible hospitals responded, a response rate of 85%. Seventy-six institutions (72%; 95% confidence interval [CI], 64%-82%) had DCD policies, 20 (19%; 95% CI, 12%-28%) were developing policies; and 7 (7%; 95% CI, 3%-14%) neither had nor were developing policies. We received and analyzed 73 unique, approved policies. Sixty-one policies (84%; 95% CI, 73%-91%) specify criteria or tests for declaring death. Four policies require total waiting periods prior to organ recovery at variance with professional guidelines: 1 less than 2 minutes and 3 longer than 5 minutes. Sixty-four policies (88%; 95% CI, 78%-94%) preclude transplant personnel from declaring death and 37 (51%; 95% CI, 39%-63%) prohibit them from involvement in premortem management. While 65 policies (89%; 95% CI, 80%-95%) indicate the importance of palliative care, only 5 (7%; 95% CI, 2%-15%) recommend or require palliative care consultation. Of 68 policies that indicate where withdrawal of life-sustaining treatment can or should take place, 37 policies (54%; 95% CI, 42%-67%) require it to occur in the operating room and 3 policies (4%; 95% CI, 1%-12%) require it to occur in the intensive care unit. CONCLUSIONS Most childrens hospitals have developed or are developing DCD policies. There is, however, considerable variation among policies.

A Workshop to Teach Medical Students Communication Skills and Clinical Knowledge About End‐of‐Life Care

We describe a half-day workshop to teach third-year medical students three focused end-of-life care skills: breaking bad news, discussing advance directives, and assessing and managing pain. Our workshop included a readers’ theater exercise and three role-play exercises. In two of the workshops, faculty members played the role of patients. We used readers’ theater to engage the students on an emotional level and set a reflective tone for the workshop. Evaluations reflected that most respondents felt that the workshop enhanced their understanding and ability to address these skills with patients. By 6 months, many students reported applying these skills to patient care in a way they thought was effective.

Ethical guidelines in pandemic influenza: recommendations of the Ethics Subcommittee of the Advisory Committee of the Director, Centers for Disease Control and Prevention.

Because of the importance of including ethical considerations in planning efforts for pandemic influenza, in February 2005 the Centers for Disease Control and Prevention requested that the Ethics Subcommittee of the Advisory Committee to the Director develop guidance that would serve as a foundation for decision making in preparing for and responding to pandemic influenza. Specifically, the ethics subcommittee was asked to make recommendations regarding ethical considerations relevant to decision making about vaccine and antiviral drug distribution prioritization and development of interventions that would limit individual freedom and create social distancing. The ethics subcommittee identified a number of general ethical considerations including identification of clear goals for pandemic planning, responsibility to maximize preparedness, transparency and public engagement, sound science, commitment to the global community, balancing individual liberty and community interests, diversity in ethical decision making, and commitment to justice. These general ethical considerations are applied to the issues of vaccine and antiviral drug distribution and use of community mitigation interventions.

A patient with dementia: decision-making capacity and surrogate decision makers.

An 85-year-old man with a reported history of dementia presented with his daughter to a busy dermatology clinic for a follow-up appointment. He had undergone 3 biopsies at the prior visit and the resultant pathology report documented 1 facial and 2 upper extremity invasive squamous cell carcinomas (SCCs). During the encounter, the patient’s daughter performed all of the meaningful communication for him, and although the patient was pleasant and cooperative, he did not clearly indicate understanding of his diagnoses or potential treatment options. The dermatologist indicated concern about the patient’s medical decision-making capacity. The patient’s daughter stated that he had not completed an advance directive before being given a diagnosis of dementia. The daughter said that her father’s primary care physician agreed to provide care for her father by allowing the daughter to act as his surrogate decision maker. The daughter claimed to understand that excision was the optimal treatment, but was unwilling to bring the patient for a subsequent follow-up visit (she provided all transportation). She requested the malignancies be treated with fluorouracil cream at home, as the patient had used this previously for actinic keratoses. She indicated that this would alleviate some of the financial burden involved with transporting the patient a long distance to and from the dermatology clinic.

Maternal rights, fetal harms.

A twenty-two-year-old patient at the county obstetrics clinic received upsetting news when an ultrasound exam revealed that her fetus had hydrocephalus, an abnormal accumulation of cerebrospinal fluid within the ventricles of the brain. The fluid build-up can raise intracranial pressure and enlarge the head, making normal passage of the fetus through the birth canal impossible. If persistently high, the pressure destroys white matter and causes mental retardation. Serial ultrasounds showed progressive build-up of fluid and moderate head enlargement. In addition, a lumbar meningomyelocele was identified, but ultrasound exams revealed no other anomalies. Viral cultures of amniotic fluid and karyotyping revealed no infection or other anomalies. The gestational age of the fetus is thirty-four weeks, and tests show that the fetal lungs are mature. Placement of a ventriculo-amniotic shunt in utero would be possible, but this approach has had limited success. Given mature lungs, the balance of risks and benefits for the fetus favors prompt delivery and postnatal shunting if needed, rather than the still-experimental intrauterine shunting. A decision is needed concerning the method of delivery. Prompt delivery, by cesarean section if needed to avoid trauma to the fetal head, would permit assessment of the infants condition and provision of treatments, including ventriculo-peritoneal shunt insertion if necessary. Recent reports suggest that among hydrocephalic fetuses for whom full treatment efforts are provided approximately 60 percent survive. Among survivors, about half are mentally retarded in varying degrees. This approach, however, exposes the woman to the various risks associated with surgical delivery, including infection, hemorrhage sufficient to require transfusion, and iatrogenic injury to the urinary tract. An alternative approach would minimize the physical risks to the woman by avoiding cesarean section, permitting the pregnancy to continue until labor begins spontaneously. If the fetal head is too large to pass through the pelvis, a needle can be inserted into the cranium and cerebrospinal fluid extracted to reduce head size. However, this cephalocentesis almost always results in stillbirth or neonatal death within a few days, due to the rapid decompression of the head or needle-induced hemorrhage. What recommendation, if any, should the physician make to the woman? Should he seek a court order for surgical delivery if the woman refuses cesarean section? The questions raised are of great concern to obstetricians detecting prenatal hydrocephalus, a common malformation. Cephalocentesis is ethically problematic for several reasons. First, if one knowingly performs an act that is highly likely to cause the death of another, and if the act causes the death, then it seems reasonable to say that one has killed the other. Even if the purpose is to prevent harm to the woman, and fetal death is not desired, the action would still be killing. Second, because the fetus is near term it deserves serious respect; causing death would then be a grave matter, regardless of whether it is the death of a neonate or of a fetus. Third, it can be argued that physicians have special role-related obligations to avoid causing death. Fourth, it is hardly ever plausible to claim that causing its death is in the interests of the hydrocephalic fetus, and certainly not in the case at hand. Nevertheless, it can be argued that it is ethical for the obstetrician to decompress the fetal head when anomalies incompatible with long-term survival have been detected (such as trisomies 13 or 18), or there are anomalies that are not necessarily incompatible with long-term survival, but are highly likely to result in death or severe handicap (such as holoprosencephaly). In the present case there are no detected anomalies that are certain or highly likely to cause death, and the physician should strive to avoid killing. …

The DREAMS Team: Creating community partnerships through research advocacy training for diverse older adults

ABSTRACT The DREAMS Team research advocacy training program helps clinical faculty and health students introduce basic clinical research concepts to diverse older adults to galvanize their active involvement in the research process. Older adults are frequently underrepresented in clinical research, due to barriers to participation including distrust, historical mistreatment, and their lack of health literacy. The DREAMS Team program aims to involve diverse older adults throughout all phases of research and increase research participation, thereby contributing to the growth of quality patient-centered, evidence-based health care. This course was developed for clinical faculty to deliver to diverse adults aged 55+ in eight 50-minute lectures, followed by half-hour small group discussions moderated by health students. A pilot cohort of 24 individuals was assessed for satisfaction post-program, and self-efficacy before and after the program. Older adult participants improved on a survey measure of self-efficacy, and indicated satisfaction on a post-program questionnaire. All agreed or strongly agreed that they enjoyed participating, and that classes enhanced knowledge/skills about the topics, were high quality, and provided useful information. Twenty-two out of 24 individuals who completed the program indicated they planned to get involved as research advocates. The DREAMS Team program can be offered either on its own, or as a follow-up program to a general health education course led by health students and/or professional researchers or clinicians. Educating older adults about the research process and advocacy through interactive seminars led by congenial and respectful researchers and health students may remove some barriers to research participation and involvement among diverse older adults.

Perspective: The promise of multi-cellular engineered living systems

Recent technological breakthroughs in our ability to derive and differentiate induced pluripotent stem cells, organoid biology, organ-on-chip assays, and 3-D bioprinting have all contributed to a heightened interest in the design, assembly, and manufacture of living systems with a broad range of potential uses. This white paper summarizes the state of the emerging field of “multi-cellular engineered living systems,” which are composed of interacting cell populations. Recent accomplishments are described, focusing on current and potential applications, as well as barriers to future advances, and the outlook for longer term benefits and potential ethical issues that need to be considered.

Expedited partner therapy for scabies: Legal and ethical considerations

Dr Itch is evaluating a young man named Sam who has pruritic papules on his hands and genitals. A mineral oil preparation confirms scabies. Dr Itch recommends treatment with permethrin cream. Sam reveals that he lives with his girlfriend and brother, both of whom have developed symptoms suggestive of scabies. Neither Sam’s girlfriend nor his brother is a patient of Dr Itch. In fact, Sam confides, neither has a primary care physician or health insurance.