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PubMed1994

Proxy decision making in Alzheimer disease research: durable powers of attorney, guardianship, and other alternatives.

Individuals in advanced stages of Alzheimer disease are incapable of giving or refusing legally or ethically valid consent to participation in biomedical and behavioral research protocols. Yet, many research protocols aimed at better treatment of persons with this disease can be conducted usefully only if such individuals are themselves involved as human subjects. This dilemma raises difficult issues of personal autonomy and beneficent motives. This article discusses several potential proxy decision-making mechanisms regarding research participation in light of the relevant legal and ethical concerns. The analysis is organized according to a matrix approach that takes into account procedural and substantive questions as well as the specific type of research protocol under consideration.

Advance Care Planning↗

PubMed1977

Teaching clinical judgment in periodontics.

Clinical judgment is a complex process that is difficult to develop. It is the essence of the health professional, yet most dental curricula do not emphasize the learning of the judgmental process. In this paper the judgmental process is analyzed into three components: input, mediation, and output. Following the analysis, suggestions for using these components are presented in four instructional phases: the introductory phase, the initial guidance phase, the application phase, and the feedback phase. While the illustrations used are drawn from periodontics, the principles are generalizable to the teaching of all clinical disciplines.

Clinical Competence↗

PubMed2002

Ethics, policy, and rare genetic disorders: the case of Gaucher disease in Israel.

Gaucher disease is a rare, chronic, ethnic-specific genetic disorder affecting Jews of Eastern European descent. It is extremely expensive to treat and presents difficult dilemmas for officials and patients in Israel where many patients live. First, high-cost, high-benefit, but low volume treatment for Gaucher creates severe allocation dilemmas for policy makers. Allocation policies driven by cost effectiveness, age, opportunity or need make it difficult to justify funding. Process oriented decision making based on terms of fair cooperation or decisions invoking the "rule of rescue" risk discriminating against minorities who may already suffer from inequitable distribution of heath care resources. Apart from cost, Gaucher disease prompts questions about abortion. Unlike severe genetic disorders, Gaucher offers no grounds for abortion and, in many ways, is analogous to gender based abortions that are prohibited regardless of fetal age. Finally, Gaucher raises concerns about the disclosure of genetic information. These affect potential carriers asked to participate in population studies and carriers and patients who must consider disclosure to others. These concerns weigh the right to privacy against communal interests and bilateral commitments.

Abortion, Induced↗

PubMed2003

Early abortion services in the United States: a provider survey.

The objective of this study was to describe the availability of early surgical and medical abortion among members of the National Abortion Federation (NAF) and to identify factors affecting the integration of early abortion services into current services. Telephone interviews were conducted with staff at 113 Planned Parenthood affiliates and independent abortion providers between February and April 2000, prior to FDA approval of mifepristone. Early abortion services were available at 59% of sites, and establishing services was less difficult than or about what was anticipated. Sites generally found it easier to begin offering early surgical abortion than early medical abortion. Physician participation was found to be critical to implementing early services. At sites where some but not all providers offered early abortion, variations in service availability resulted. Given the option of reconsidering early services, virtually all sites would make the same decision again. These data suggest that developing mentoring relationships between experienced early abortion providers/sites and those not offering early services, and training physicians and other staff, are likely to be effective approaches to expanding service availability.

Abortifacient Agents↗

PubMed2005

[Should a minor, unattended by a parent, be given medical services? Use of an algorithm to critique the Israel Ministry of Health regulations].

BACKGROUND: Parents are the natural custodians of their children, thus minors need parental approval to receive medical services. In February 2004, the Israel Ministry of Health issued a set of regulations titled "Visits of unaccompanied minors to primary care clinics", aimed at assisting primary care clinicians in their decision-making process on this sensitive issue. AIMS: (1) To convert the above mentioned regulations into an algorithmic format in order to facilitate their use by community clinicians, and (2) To review and critique the regulations, using the process of algorithm conversion. METHODS: The regulations were studied thoroughly. Three rounds of Delphi process for reaching consensus were used to create an algorithm, based on these regulations. The algorithm building process was used to critique the regulations. RESULTS: The Israel Ministry of Health regulations, "Visits of unaccompanied minors to primary care clinics", were found to be long and complicated. The process of building the algorithm revealed several difficulties certain concepts were not well defined, many exceptional situations were found and a large portion of the regulations was dedicated to reporting and record keeping. Converting the regulations into an algorithmic format simplified them and assisted in their CONCLUSIONS: Converting complex regulations into an algorithmic format can facilitate their daily use by community clinicians. Parts of the regulations for "Visits of unaccompanied minors to primary care clinics" are incompatible with present clinic routine and, therefore, difficult to implement.

Adolescent↗

PubMed2000

Facilitating end-of-life decision-making: strategies for communicating and assessing.

End-of-life decision-making is often a difficult process and one that many elderly patients and their families will undergo. The grounded theory study of nurses, physicians, and family members (n = 20) reported in this article examined provider behaviors that facilitated the process of decision-making near the end of patients' lives. According to participants, providers who are experienced and comfortable are more likely to engage in communication and assessment strategies that facilitate end-of-life decision-making. Communication strategies included: being clear, avoiding euphemisms, spelling out the goals and expectations of treatment, using words such as "death" and "dying," and being specific when using such words as "hope" and "better." Assessment strategies included: assessing patients' physical conditions and end-of-life wishes, patients' and family members' understandings of the disease and prognosis, and their expectations and goals. An important first step for improved care is making explicit the provider's communicating and assessing strategies that facilitate end-of-life decision-making.

Aged↗

PubMed2003

Palliative chemotherapy or best supportive care? A prospective study explaining patients' treatment preference and choice.

In palliative cancer treatment, the choice between palliative chemotherapy and best supportive care may be difficult. In the decision-making process, giving information as well as patients' values and preferences become important issues. Patients, however, may have a treatment preference before they even meet their medical oncologist. An insight into the patient's decision-making process can support clinicians having to inform their patients. Patients (n=207) with metastatic cancer, aged 18 years or older, able to speak Dutch, for whom palliative chemotherapy was a treatment option, were eligible for the study. We assessed the following before they consulted their medical oncologist: (1) socio-demographic characteristics, (2) disease-related variables, (3) quality-of-life indices, (4) attitudes and (5) preferences for treatment, information and participation in decision-making. The actual treatment decision, assessed after it had been made, was the main study outcome. Of 207 eligible patients, 140 patients (68%) participated in the study. At baseline, 68% preferred to undergo chemotherapy rather than wait watchfully. Eventually, 78% chose chemotherapy. Treatment preference (odds ratio (OR)=10.3, confidence interval (CI) 2.8-38.0) and a deferring style of decision-making (OR=4.9, CI 1.4-17.2) best predicted the actual treatment choice. Treatment preference (total explained variance=38.2%) was predicted, in turn, by patients' striving for length of life (29.5%), less striving for quality of life (6.1%) and experienced control over the cause of disease (2.6%). Patients' actual treatment choice was most strongly predicted by their preconsultation treatment preference. Since treatment preference is positively explained by striving for length of life, and negatively by striving for quality of life, it is questionable whether the purpose of palliative treatment is made clear. This, paradoxically, emphasises the need for further attention to the process of information giving and shared decision-making.

Adult↗

PubMedDate not supplied

Speech and language therapy service delivery for bilingual children: A survey of three cities in Great Britain.

BACKGROUND: Speech and language therapy (SLT) managers are expected to ensure that there are appropriate services available for bilingual and multilingual clients in order to ensure an equitable service to all clients. However, there is a paucity of data available to inform service planning. AIMS: To identify the level to which SLT services in three UK cities meet the recommendations of The Royal College of Speech and Language Therapists (RCSLT) Good Practice Guidelines. Socio-demographic information is provided about the number of children from ethnic minorities in the population and the proportion of (bilingual) children from ethnic minorities on the speech and language therapy caseload. Based on this information, it is estimated whether there is proportionate representation of bilingual children on SLT caseloads, and whether services are in place to meet the needs of those clients. METHODS & PROCEDURES: Population statistics were gathered from Census data and data were gleaned from Local Education Authorities. The study used a combination of interview and postal questionnaires to SLTs, with particular emphasis on the issues that may affect service provision. OUTCOMES & RESULTS: As in previous studies, it was difficult to find reliable data. However, two of the three cities studied appeared to be offering a proportionate service to both monolingual and bilingual children in terms of the relative numbers of children on caseloads. Only one city was confident that their SLT service was fully meeting the RCSLT Good Practice Guidelines on bilingualism, although all three cities were aware of them and appeared to be making an effort at varying levels to address the principles of those guidelines. CONCLUSIONS: There is a need for a change in how data on linguistic diversity in society are collected and disseminated, both at a national level and within SLT services, so that informed decisions can influence the future of quality services to minority groups.

Child↗

PubMed1986

Medicare payment for new technologies. Can the process be improved despite conflicting goals? An ECRI technology management assessment.

Decisions about Medicare payment for new technologies are made by a multiagency process that became even more complex with the advent of DRG-based payments for inpatient care. Numerous problems with this decision-making process are widely acknowledged to exist but difficult to solve because of inherent conflicting goals. This report proposes consideration of basic improvements to the process, including: increased support for clinical and cost studies, particularly from manufacturers of new technologies; approval of provisional payments to providers who agree to collect effectiveness and cost data; additional research into technology assessment methods; clarification of decision-making criteria; opening of the coverage-decision process to greater public scrutiny; according more weight to recommendations of the Prospective Payment Assessment Commission; submission of additional data to the Food and Drug Administration; and increasing the flow of information among Medicare coverage-decision agencies and other third-party payers. Many of these modifications can be accomplished without congressional action, if the interested parties are willing to work together to improve the coverage-decision process.

Centers for Medicare and Medicaid Services, U.S.↗

PubMedDate not supplied

Health care provider choice: the North West Province of Cameroon.

Health care is provided in many developing countries free of any charge at the point of delivery. This is attributed to the fact that health care is one of the basic human rights. While modern health care in public health units is free, patients in rural areas continue to use either self-care, traditional healers or both. In Cameroon, the idea of integrating traditional and modern medical practices is discussed by both traditional and medical practitioners. However, it is not very clear what influences the household's choice of one or the other. Within a health district, where there are many providers, the question as to whether or not there is a possibility of choice open to all is posed. This article reports on a study undertaken in a rural health district that shows that there are many factors that influence the choice of health care. Among these factors is quality of care which is the most important factor influencing the choice of health care provider. As quality of care increases in governmental health centres, their choice probability also increases. Other factors include: the time spent seeking treatment; household income and size; distance; and, cost of health care. Those with higher incomes tend to choose private health units and those with larger families tend to choose government health units. Other socio-cultural factors, difficult to model, appear to also influence the choice of providers. It is concluded that since household income influences the choice of private health units, policies targeting poverty alleviation should be instituted in the rural areas to provide households with income. This will enable them widened access to private health care and enable government to redeploy its scarce resources to maintain and extend services to needy areas.

Cameroon↗

PubMed1999

Principles for priority setting in mental health services and their implications for the least well off.

Funding for mental health services has declined in recent years, posing the difficult challenge of setting program and individual client service priorities with reduced resources. The author reviews seven principles for resource allocation and their potential impact on people with severe and persistent mental illness. These principles address issues of the autonomy of individual health care needs; the need for client, stakeholder, and provider input into goal setting; cost-effectiveness; equity and fairness; client responsibility for making effective use of services; the impact of private industry on the development and marketing of new treatments; and the importance of considering local skill availability and population needs in setting program priorities. Because none of these principles take precedence over the others, their joint application does not necessarily yield consistent program priorities. However, they provide a frame of reference for approaching the task of priority setting and for understanding why priorities may vary from different perspectives.

Chronic Disease↗

PubMedDate not supplied

Team collaborative practices between teachers and occupational therapists.

OBJECTIVE: A descriptive, correlational study using a survey instrument and record review was designed to describe collaboration practices between teachers and occupational therapists in public schools and to explore relationships of these practices to individual education plan (IEP) objectives and teachers' perceptions of occupational therapy contributions to student skill development. METHOD: Forty teachers of students who receive occupational therapy comprised the sample. Descriptive statistics and Spearman rank order correlations were used to describe the practices and to determine associations among the variables. RESULTS AND CONCLUSIONS: The findings indicated that teachers and occupational therapists were using collaborative team practices, such as jointly developing goals and objectives, collaboration within the classrooms, jointly monitoring interventions, and jointly reviewing student progress. However, scheduling team meetings was difficult. The majority of respondents stated that occupational therapy contributed to student skill development, and as collaboration practices increased, the teachers' perceptions of occupational therapy contribution to student skill development increased. A significant negative correlation was found between the percentage of IEP objectives met variable and three collaborative variables--team meetings, reviewing progress, and develop goals and objectives. This finding indicated that as the frequency of these team processes increased, fewer objectives were met.

Adolescent↗

PubMed1998

"A place like that": advance directives and nursing home admissions.

Decisions about admitting a mentally incapacitated person to a nursing home raise a variety of difficult legal, ethical, and public policy issues. A strategy for anticipating and addressing this contingency prospectively, by encouraging execution of formal advance planning directives while the individual is still capable, may mitigate some of the dilemmas associated with these issues. The author discusses the contours and feasibility of such a strategy, analyzing nursing home admission on one's behalf and for refusing such admission, or placing explicit conditions on such admission, in advance of the time that the actual decision must be made.

Advance Directives↗

PubMed2004

Is bioethical training useful in preparing doctors to take decisions in the emergency room?

We study the decisions taken in five real cases by 178 doctors working in hospital emergency services and compare their decisions with those proposed a reference group composed of professionals with a master's degree in bioethics. The findings of our study point to an increased ability to take difficult decisions in critical situations involving the use of life-support measures in the emergency room. The group of professionals chosen as "gold standard", despite lacking the training and clinical preparation of emergency doctors, made decisions that were technically very close to the most suitable. In this respect, an adequate ethical training facilitated the taking of decisions that required the involvement of personally held values, underlining the need for such training in the case of professionals who will work in hospital emergency services.

Adult↗

PubMed2003

Referred to high secure care: determinants of a bed offer/admission and placement after one year.

BACKGROUND: The admission process to high secure care ought to ensure that those admitted (a) receive mental health care that meets their needs and (b) that this is provided at an appropriate level of security. AIMS: A study was undertaken to test the effectiveness of the gate keeping process according to these two criteria. METHOD All referrals for admission to Rampton high security hospital over one year were examined and, in addition, all women, all Anglo-Caribbeans and a random 50% sample of the Caucasian male majority were selected for interview. Each case was followed up for 12 months following the panel decision to determine his/her placement at that time. RESULTS: Of 138 referred, 56 (41%) were initially offered a bed although nearly half (66) had been subsequently admitted by the end of the study period. Seriousness of mental disorder and offence were independently associated with admission. After one year, one third of those admitted were no longer in high secure care. CONCLUSIONS: The variables predictive of admission (i.e. seriousness of both mental disorder and offence) suggest that the decision-making process was valid. Placement at 12 months tended to endorse the decision not to offer a bed, but it is more difficult to interpret the reverse as short admissions to high security for those who left within 12 months may have been appropriate. There was no apparent advantage in having a panel reviewing the decision of the assessing clinician.

Admitting Department, Hospital↗

PubMed1996

[Top-Forum: an interactive multimedia knowledge database to improve quality of care in pediatric oncology].

The treatment of pediatric cancer patients is characterised by complex and aggressive chemotherapy, difficult decision making, the numerous protocols available and the necessity of highly skilled caregivers. Quality of care is a major issue in all pediatric oncology units. We created an interactive multi-media database available to each caregiver to permit him/her to have easy access to information and thus increase his/her knowledge and participate in increasing their group's know-how. The computer database is available to all on a free-access basis in each ward. This is a novel approach to quality care, as it accords great importance to personal formation, allowing each caregiver to broaden his/her knowledge via easily obtained data which he/she can help enrich by permanent feedback. This database may become the backbone of department know-how.

Adolescent↗

PubMed1999

Attitudes of faculty, housestaff, and medical students toward clinical practice guidelines.

PURPOSE: To examine attitudes of faculty, housestaff, and medical students toward clinical practice guidelines. METHOD: In a 1997 cross-sectional survey, a two-part, 26-item, self-administered questionnaire was mailed to all faculty, housestaff, and medical students in the department of internal medicine at Case Western Reserve University School of Medicine. The questionnaire asked for demographic information and attitudes toward clinical guidelines. RESULTS: Of 379 persons surveyed, 254 (67%) returned usable questionnaires: 56% of the medical students, 70% of the housestaff, and 73% of the full-time faculty. Medical students reported learning about guidelines predominantly during clerkships in internal medicine (71%) and pediatrics (68%). Overall, the respondents agreed most strongly that guidelines are "useful for the care of common problems," and least strongly that guidelines are "difficult to apply to individual patients" and "reduce physician options in patient care." Faculty were more likely to consider guidelines a "good educational tool" and less likely than were medical students and housestaff to agree that they promote "cookbook medicine." Of 11 influences on clinical decision making, the three groups together rated practice guidelines eighth or ninth. The use of guidelines for academic investigations was rated most appropriate, overall. In terms of their appropriateness, faculty consistently rated the use of guidelines more favorably except for use in malpractice suits. CONCLUSION: Faculty, housestaff, and medical students have significantly different perceptions of and attitudes toward clinical practice guidelines. Further studies are needed to explain the reasons for these differences. Considerable education and involvement must occur at all levels for practice guidelines to be successfully implemented and understood.

Analysis of Variance↗

PubMed1990

Survey: legal and strategic consulting most in demand.

What consulting services are health care CEOs using? Hospitals magazine teamed up with the American Association of Healthcare Consultants to find out. The 723 CEOs who responded say legal assistance and strategic planning are today's top consulting areas. CEOs who were asked to comment on the survey results were not surprised that legal assistance topped the list. The trend toward hiring more outside attorneys "is a reflection of the multiplicity of issues hospitals face in the legal arena", says Ronald Aldrich, president and CEO of Franciscan Health System, Chadds Ford, PA. Why are CEOs placing so much emphasis on strategic planning? The answer is simple, say executives: Hospitals are trying to find ways to survive difficult times.

Attitude of Health Personnel↗