Background Families' experiences in the hospital influence their decisions about donating organs of brain-dead relatives. Meeting families' support needs during this traumatic time is an obligation and a challenge for critical care staff. Objectives (1) To elicit family members' accounts of various types of support received and perceived quality of care for themselves and their loved ones when they made the donation decision, and (2) to examine the relationship between these factors and the families' donation decision. Methods Retrospective telephone interviews of 199 families from different regions of the country were completed. Aside from demo graphic data, the survey addressed perceptions of informational, emotional, and instrumental support and quality of care. Results One hundred fifty-four study participants consented to donation; 45 declined. White next of kin were significantly more likely than African Americans to consent. Specific elements of reported support were significantly associated with consent to donate. Donor and nondonor families had differing perceptions of quality care for them selves and their loved ones. Receiving understandable information about organ donation was the strongest predictor of consent. Conclusions Specific supportive behaviors by staff as recounted by family members of potential donors were significantly associated with consent to donation. These behaviors lend themselves to creative training and educational programs for staff. Such interventions are essential not only for next of kin of brain-dead patients, but also for staff and ultimately for the public as a whole. (American Journal of Critical Care. 2010;19:e52-e62) Notice to CE enrollees:A closed-book, multiple-choice examination following this article tests your under standing of the following objectives:1. Identify at least 2 types of information that family members found to be helpful when considering organ donation for a brain-dead relative. 2. Describe bereavement care. 3. Discuss at least 3 reasons why relatives did not consent to donation for their loved ones.
Fewer than half of families approached about organ donation provide consent. Identifying specific support needs of family members in these situations is critical to help them cope and for improving consent rates. This focus group study retrospectively investigated donor and non-donor family members' perceived social support needs while facing the death of their loved one. Implications for nursing care and other interventions are discussed for interested healthcare providers.
Summary:During recent decades the doctrine of informed consent has become a standard part of medical care as an expression of patients' rights to self-determination. In situations when only one treatment alternative exists for a potential cure, the extent of a patient's self-determination is constrained. Our hypothesis is that for patients considering a life-saving procedure such as bone marrow transplant (BMT), informed consent has little meaning as a basis for their right to self-determination. A longitudinal study of BMT patients was undertaken with four self-administered questionnaires. Questions centered around expectations, knowledge, anxiety and factors contributing to their decision to undergo treatment. Although the informed consent process made patients more knowledgeable about the treatment, their decision to consent was largely based on positive outcome expectations and on trust in the physician. Informed consent relieved their anxieties and increased their hopes for survival. Our conclusion was that the greatest value of the informed consent process lay in meeting the patients' emotional rather than cognitive needs. When their survival is at stake and BMT represents their only option, the patient's vulnerability puts a moral responsibility on the physician to respect the principle of beneficence while not sacrificing the patient's right to self-determination. Keywords: informed consent; understanding; trust; beneficence; patient autonomy A patient undergoing a very complex and potentially lifesaving procedure such as a bone marrow transplant (BMT) is required to make difficult decisions based on extensive and complicated information. The difficulties of the decision-making process are exacerbated by the emotionally and physically demanding circumstances surrounding a potentially terminal illness. By virtue of having a particular life-threatening illness, patients are, so to speak, 'forced' to consider BMT if they are to have a chance to survive in the long term. In such situations, their voluntariness to consent is constrained.The notion of constrained voluntariness and its impliCorrespondence: LH Jacoby,
The overall awareness of an ongoing exception from informed consent trial after community consultation and notification was low. A population with potential for enrollment in such a study did not demonstrate a high degree of acceptance of such practices. There were differences among certain demographic groups in the degree of acceptance. These differences may guide institutional review boards and investigators in community-consultation strategies for future waiver of or exception from informed consent studies.
Medical educators agree that training in end-of-life care (EOLC) must be an integral part of medical education at all levels. While progress in this area of education has taken place, many gaps still exist. This article describes the self-reported impact of a required one-week hospice rotation for third-year medical students. Students completing their hospice rotation during a one-year period were asked to write an essay describing the most important lessons they learned. Qualitative analyses of the essays revealed 10 core themes and generated a coding schema for detailed analysis. Students' essays reflected knowledge gained, emotional reactions, cognitive insights, and relationship-centered skills. Comments focused on the following themes: benefits and philosophy of hospice; impact on future practice; interdisciplinary team approach; management of pain and suffering; facts about hospice; personal impact; communication with patients and families; dedication and skill of staff; role of families; and value of home care. Students consistently recognized the significance of positive role models. Learning about a new field of medicine helped broaden students' knowledge, skills, and beliefs, and expanded their assumptions about illness and suffering, the role of health care professionals, and the goals of medicine. Reflection and writing brought about self-awareness of the learning process itself. The study demonstrates that a robust clinical EOLC exposure can be effectively incorporated into undergraduate education and that student self-reports constitute a valuable mode of evaluation. Longitudinal assessments of trainees' competencies in EOLC are needed to optimize these educational endeavors.
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