Incorporating patient and family preferences into evidence-based medicine

Background Clinicians are encouraged to practice evidence-based medicine (EBM) as well as patient-centered medicine. At times, these paradigms seem to be mutually exclusive and difficult to reconcile. It can become even more challenging when trying to include the preferences of the patient’s family members. This paper discusses the basis for this quandary, providing examples of the real-world impact it has on diagnosis-seeking and treatment decision-making behaviors and how it might inform implementation of EBM practices. Analysis To further explore the role of friends and family in health-care decision making and to understand how patients and families introduce other considerations that may or may not be congruent with a strictly EBM approach, data from two research studies that examined healthcare–seeking behaviors are presented. Both studies explore how family and friends not only can influence health-care decisions but also may be a source of conflict for the patient and/or clinician. Conclusions Illness is a biological and social process. Clinicians who engage in EBM need to acknowledge the social and cultural factors that affect the health-care encounter, understand the important role of those factors in health-care decision making, and expand the paradigm of EBM to incorporate sociocultural influences more explicitly. Moreover, recognition of the influences family members and other caregivers have within the clinical encounter—by offering opinions and participating in treatment-related decision making—is needed and could lead to more efficient and effective health care

Discussions about Limiting Treatment in a Geriatric Clinic

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/111239/1/j.1532-5415.1993.tb06705.x.pd

Organ donation in the United States

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/72348/1/j.1600-6143.3.s4.4.x.pd

Facilitating treatment engagement for early psychosis through peer-delivered decision support : Intervention development and protocol for pilot evaluation

Background: Emerging adults with early psychosis demonstrate high rates of service disengagement from critical early intervention services. Decision support interventions and peer support have both been shown to enhance service engagement but are understudied in this population. The purposes of this article are to describe the development of a novel peer-delivered decision coaching intervention for this population and to report plans for a pilot study designed to gather preliminary data about its feasibility, acceptability, and potential impact. Methods: The intervention was developed based on formative qualitative data and in collaboration with a diverse team of researchers, key stakeholders, and expert consultants. The pilot trial will utilize a single-group (N = 20), pre-post, convergent mixed-methods design to explore whether and how the intervention addresses decision-making needs (the primary intervention target). The impact of the intervention on secondary outcomes (e.g., engagement in the program) will also be assessed. Additionally, through observation and feedback from the peer decision coach and study participants, we will evaluate the feasibility of research and intervention procedures, and the acceptability of information and support from the peer decision coach. Discussion: The peer-delivered decision coaching intervention holds promise for assisting young people with making informed and values-consistent decisions about their care, and potentially enhancing service engagement within this traditionally difficult-to-engage population. If the intervention demonstrates feasibility and acceptability, and pilot data show its potential for improving treatment decision-making, our work will also lay the foundation for a new evidence base regarding roles for peer specialists on early intervention teams

Health Insurance and Cardiac Transplantation A Call for Reform

Cardiac transplantation is an accepted therapy for patients with end-stage heart failure (ESHF). Presently in the U.S., patients with ESHF need to have health insurance or another funding source to be considered eligible for cardiac transplantation. Whether it is appropriate to exclude potential recipients solely due to lack of finances has received considerable interest including being the subject of a recent major motion picture (John Q, New Line Cinema, 2002). However, one important aspect of this debate has been underappreciated and insufficiently addressed. Specifically, organ donation does not require the donor to have health insurance. Thus, individuals donate their hearts although they themselves would not have been eligible to receive a transplant had they needed one. By querying Siminoff’s National Study of Family Consent to Organ Donation database, we find that this situation is not uncommon as ∼23% of organ donors are uninsured. Herein we also discuss how the funding requirement for cardiac transplantation has been addressed by the federal government in the past, its implications on the organ donor consent process, and its potential impact on organ donation rates. We call for a government-sponsored, multidisciplinary task force to address this situation in hopes of remedying the inequities in the present system of organ allocation

Genetic effects on gene expression across human tissues

Characterization of the molecular function of the human genome and its variation across individuals is essential for identifying the cellular mechanisms that underlie human genetic traits and diseases. The Genotype-Tissue Expression (GTEx) project aims to characterize variation in gene expression levels across individuals and diverse tissues of the human body, many of which are not easily accessible. Here we describe genetic effects on gene expression levels across 44 human tissues. We find that local genetic variation affects gene expression levels for the majority of genes, and we further identify inter-chromosomal genetic effects for 93 genes and 112 loci. On the basis of the identified genetic effects, we characterize patterns of tissue specificity, compare local and distal effects, and evaluate the functional properties of the genetic effects. We also demonstrate that multi-tissue, multi-individual data can be used to identify genes and pathways affected by human disease-associated variation, enabling a mechanistic interpretation of gene regulation and the genetic basis of diseas

The authority of next-of-kin in explicit and presumed consent systems for deceased organ donation: an analysis of 54 nations

Background. The degree of involvement by the next-of-kin in deceased organ procurement worldwide is unclear. We investigated the next-of-kin’s authority in the procure-ment process in nations with either explicit or presumed consent. Methods. We collected data from 54 nations, 25 with presumed consent and 29 with explicit consent. We char-acterized the authority of the next-of-kin in the decision to donate deceased organs. Specifically, we examined whether the next-of-kin’s consent to procure organs was always required and whether the next-of-kin were able to veto procurement when the deceased had expressed a wish to donate. Results. The next-of-kin are involved in the organ procure-ment process in most nations regardless of the consent principle and whether the wishes of the deceased to be a donor were expressed or unknown. Nineteen of the 25 nations with presumed consent provide a method for individuals to express a wish to be a donor. However, health professionals in only four of these nations responded that they do not override a deceased’s expressed wish because of a family’s objection. Similarly, health profes-sionals in only four of the 29 nations with explicit consent proceed with a deceased’s pre-existing wish to be a donor and do not require next-of-kin’s consent, but caveats still remain for when this is done. Conclusions. The next-of-kin have a considerable influ-ence on the organ procurement process in both presumed and explicit consent nations