Adaptive behavior, functional outcomes, and quality of life outcomes of children requiring urgent ICU admission.

OBJECTIVE: To describe the adaptive behavior and functional outcomes, and health-related quality of life of children who were urgently admitted to the ICU. DESIGN: Prospective observational study. SETTING: Critical Care Medicine program at a University-affiliated pediatric institution. PATIENTS: Urgently admitted patients, aged 1 month to 18 yrs. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We evaluated children's adaptive behavior functioning with the Vineland Adaptive Behavior Scale-2, functional outcomes with the pediatric cerebral performance category and pediatric overall performance category, and health-related quality of life with the Pediatric Quality of Life Inventory 4 and Visual Analogue Scale. We enrolled 91 children and 65 (71%) completed the 1-month assessment. Patients had a mean (SD) Vineland Adaptive Behavior Scale-2 rating of 83.2 (± 24.8), considered to be moderate-low adaptive behavior functioning. From baseline to 1 month, pediatric cerebral performance category ratings did not significantly change (p = 0.59) and pediatric overall performance category ratings significantly improved (p = 0.03). Visual Analogue Scale ratings significantly worsened from baseline to 1 wk (p < 0.0001) and significantly improved from 1 wk to 1 month (p=0.002). At 1 month, patients had a mean (SD) Pediatric Quality of Life Inventory 4 rating of 52.8 (± 27.9) of 100, a poor quality of life rating. Circulatory admissions, worse pediatric cerebral performance category score at baseline, worse transcutaneous oxygen saturation, and longer cardiac compression duration were independently associated with worse adaptive behavior functioning. Neurological admissions, worse pediatric cerebral performance category score at baseline, longer ICU stay, and longer duration of extracorporeal membrane oxygenation were independently associated with worse functional outcome. Worse pediatric cerebral performance category score at baseline, longer ICU stay, and longer duration of extracorporeal membrane oxygenation were independently associated with worse health-related quality of life. CONCLUSIONS: Children surviving PICU have significant adaptive behavior functioning and functional morbidity and reduced health-related quality of life. Although neurologic morbidity following ICU was associated with baseline state, we found that resuscitation intensity and illness severity factors were independently associated with the development of acquired brain injury and reduced quality of life.

Patients' perspectives on allocation of publicly funded in vitro fertilization in Ontario: a qualitative study.

BACKGROUND: The aim of this study was to determine consumers' perspectives on fair allocation of publicly funded in vitro fertilization (IVF) in the recently implemented Ontario Fertility Program (OFP). The research questions were as follows: 1) What factors do those who require IVF think are important to consider when distributing funded IVF? and 2) What are the barriers to accessing publicly funded IVF? METHODS: We approached this qualitative study with a social constructivist interpretative framework with grounded theory methodology. Data were obtained via focus group. We recruited participants eligible for the OFP from a tertiary care fertility clinic. Two researchers conducted all interviews, independently reviewed the transcriptions and analyzed the data for open coding, followed by axial coding and then selective coding to determine themes. RESULTS: A total of 13 participants (10 women and 3 men with an average age of 36.4 [range 28-40.7] yr) partook in 4 focus groups. The average duration of infertility was 1.9 (range 0.4-3) years. Three important domains were identified. First, the procedure of distributing funds should be done in a transparent and consistent manner. Second, everyone should have a fair and equal chance to accessing the funds. Participants suggested a combination of first-come, first-served and a scoring system as a method to distribute funds. Lack of communication, associated costs and stress of experiencing infertility were cited as barriers to accessing publicly funded IVF. INTERPRETATION: Ensuring equal and fair access to funds should be prioritized, and information about the process and distribution method to obtain OFP funding should be clearly provided to patients. Transparency, standardization and better communication should be implemented to uphold procedural justice for patients and reduce emotional stress. The findings may be considered by policy-makers to improve the current OFP and when developing similar programs.

Approaching end-of-life care in organ transplantation: the impact of transplant patients' death and dying.

Despite the success of transplantation, many transplant candidates and transplant recipients die each year. Some die awaiting transplants and some die months or years after receiving an organ. Quality end-of-life care can play a valuable role in easing the impact of death and dying in transplantation, as it focuses on enhancing patients' quality of life near death. Quality end-of-life care recognizes the values and preferences of patients and their families, and involves a process of shared decision making about patients' healthcare treatment in collaboration with healthcare practitioners. Advance care planning involves discussions with patients about their wishes and values about care, in the event that the patient becomes incapable of making such decisions. This article focuses on the application to transplantation of quality end-of-life care and advance care planning and identifies the effects that death and dying of transplant patients have on others. The information herein encourages healthcare practitioners to view and deliver quality end-of-life care as part of transplant patients' overall treatment management.

"Futile" care: do we provide it? Why? A semistructured, Canada-wide survey of intensive care unit doctors and nurses.

PURPOSE: To qualitatively explore the process of the provision of futile care in Canadian intensive care units (ICUs). MATERIALS AND METHODS: A mailed, semistructured survey was sent to medical and nursing unit directors of all Canadian ICUs, asking them to estimate the frequency of provision of futile care, when care becomes "futile," the reasons such care is provided, and the resources that are available to help make end-of-life decisions. Nurse/physician agreement was assessed by chi(2) analysis or Fisher exact test. Content analysis to identify common themes was carried out by 4 raters using a Delphi process. RESULTS: The response rate was 72%. The majority reported futile therapy had been provided in their ICU over the last year (nurses, "N"=95%, physicians, "P"=87%, P=.02). The most commonly stated reasons for providing futile care were family request (N=91%, P=91%, P=NS) and attending physician request (N=91%, P=87% P=NS). Physicians were cited to provide futile care because of prognostic uncertainty (N=73%, P=84%, P=.047) and legal pressures (N=84%, P=75%, P=NS). Comment review revealed 8 main reasons why futile care was provided, the most common of which were that "death was perceived as treatment failure," and poor provider-family communication. Few providers were aware of societal (N=26%, P=51%) or local (22%, all) guidelines relating to the provision of futile care, but of those who were aware, the majority found these useful (range, 73%-74%). Twenty-seven percent expressed the need for someone to discuss difficult ethical issues, such an individual with ethics training specifically assigned to the ICU. CONCLUSIONS: Caregivers voice the opinion that provision of futile care occurs, for multiple reasons, not the least of which is provider-driven. Nurses and physicians of Canadian ICUs perceive the need for increased availability of more ICU-directed and ethically trained resources to help them in providing end-of-life care.

Quality end-of-life care: A global perspective.

BACKGROUND: Quality end-of-life care has emerged as an important concept in industrialized countries. DISCUSSION: We argue quality end-of-life care should be seen as a global public health and health systems problem. It is a global problem because 85 % of the 56 million deaths worldwide that occur annually are in developing countries. It is a public health problem because of the number of people it affects, directly and indirectly, in terms of the well being of loved ones, and the large-scale, population based nature of some possible interventions. It is a health systems problem because one of its main features is the need for better information on quality end-of-life care. We examine the context of end-of-life care, including the epidemiology of death and cross-cultural considerations. Although there are examples of success, we could not identify systematic data on capacity for delivering quality end-of-life care in developing countries. We also address a possible objection to improving end-of-life care in developing countries; many deaths are preventable and reduction of avoidable deaths should be the focus of attention. CONCLUSIONS: We make three recommendations: (1) reinforce the recasting of quality end-of-life care as a global public health and health systems problem; (2) strengthen capacity to deliver quality end-of-life care; and (3) develop improved strategies to acquire information about the quality of end-of-life care.

Culture, brain death, and transplantation.

From the social sciences, we know the space between life and death is historically and culturally constructed, fluid and open to dispute. The definition of death has cultural, legal, and political dimensions. As healthcare becomes more culturally diverse, the interface between culture and the delivery of healthcare will increase. In our increasingly pluralistic, interdependent society, there is a growing demand to integrate healthcare, including transplantation, into a broader context that respects both individual and cultural diversity. It is important that we first consider and explore what elements of Western healthcare practices including definitions and advances, such as brain death and organ donation, are culturally influenced. This article highlights some of the cultural influences on brain death by focusing on Western and Japanese perspectives on the permissibility of organ procurement from brain-dead persons. It also offers 4 recommendations for healthcare workers working cross-culturally.

Cultural pluralism in health care: a South-African-Canadian comparison.

Views on the acceptance of cultural pluralism in health care are shaped by myriad of social and cultural factors. Through the comparison of Canada and South Africa, this article examines how ideology, history, demographics, and the cultural understanding of illness have shaped the views of cultural pluralism in South Africa in a way that is distinct from the Canadian perspective. Canadian health-care workers must consider such differences as we must be careful not to apply the concept of cultural pluralism in a way that people of other cultures may not understand or value. As the breadth of Canadian international health-care initiative grows, it is important to consider how other nations perceive cultural pluralism; otherwise, the application of our views on pluralism in health care can fail.

Cultural considerations for Canadians in the diagnosis of brain death.

PURPOSE: This articles explores cultural perceptions and values related to brain death and organ donation from both a Western and non-Western perspective. SOURCE: Anthropological literature review of the historical concept of brain death in Canada using Eastern culture as a comparison. PRINCIPAL FINDINGS: Although the concept of brain death and concomitant organ donation have become widely practiced in Western nations such as Canada, from a cross-cultural point of view these concepts and practices can be deeply troubling and may hold profoundly different meaning to people new to Canada. CONCLUSIONS: Canada has a deep commitment and obligation to respect diversity as reflected in the Canadian Charter of Rights and Freedoms. Therefore, healthcare workers have an obligation to respect cultural differences. To truly respect cultural differences we must first explore our own culturally formulated belief systems and then consider how our views may interface with other cultures. Our findings call for a greater analysis of the cultural influences on the concept of brain death and organ donation as a means of building a better understanding and respect for cultural diversity.

Pro/con ethics debate: is nonheart-beating organ donation ethically acceptable?

This pro/con debate explores the ethical issues surrounding nonheart-beating organ donation (NHBD), a source of considerable controversy. It is estimated that NHBD can increase the number of organs available for transplant by 25% at a time of great need. However, should NHBD be ethically acceptable? In support of NHBD, it may be acceptable practice if there is a separation of the rationale to withdraw life support/to withhold cardiopulmonary resuscitation from the decision to recover organs, if no conflicts of interest exist, if a waiting time precluding spontaneous return of circulation is included, and if NHBD conforms to a standardized protocol. Against NHBD, there are questions regarding the ambiguity and cultural perspectives of death, regarding whether a separation of rationale between withdrawal and donation is sufficient to preclude conflicts of interest, and regarding whether variable protocols arise that subordinate the patient to the goal of donation. Such concerns suggest NHBD may damage the trust in patient-physician relationships and may adversely affect organ donation rates.