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Standards of care in practice: the nurse's role in effecting change.

Elderly patients on dialysis present a special challenge because they are often unsure of taking their health into their own hands and may be more resistant to self-management. When G.B. started on dialysis, he had little knowledge of what this entailed and self-management was not a concept that he could accept. Assertive communication with caregivers and protective self-management strategies were stressed as he transitioned to the unit. He did not complain to his providers when cannulation became more difficult, perhaps because of what he perceived as negative repercussions (Curtin, Sitter, Schatell, & Chewning, 2004). Reassurance, presence, and explanations were helpful in alleviating G.B.'s fears of speaking up. Communication was critical and required an ongoing effort by the staff. End of life issues common to the elderly patient include establishing an advance directive. G.B. chose a do not resuscitate status. He discussed his wishes with the social worker and though he did not want heroic efforts if he was at his home, he wanted reasonable measures done while at the dialysis center. Therefore, he decided that full resuscitative measures should be instituted. He was not a candidate for transplantation. G.B. presents with many issues familiar to dialysis nurses. On going and ever-changing planning is needed for the patient undergoing any extracorporeal treatment. As the primary contact with the patient the nurse is also the primary communicator with the physician who rounds in the dialysis unit. In addition, problem identification and initiation of referrals makes the nurse the most important connection for the patient on dialysis. This case uses the recently revised standards of care for nephrology nursing and the KDOQI guidelines. The standards support the creativity and decision making needed for individual patients in planning of care (Amato, 2006; Burrows-Hudson & Prowant, 2005) and the KDOQI guidelines substantiate interventions used in caring for G.B. Interpretation of the guidelines for individual patients and families is an important step. Problems for the elderly as they undergo hemodialysis require ongoing assessment and evaluation in order to bridge care from dialysis to end of life. Each of the guidelines offers just that, a guideline for the stages and experiences of the patient on dialysis.

Advance Directives↗

Critical ingredients of consumer run services: results of a national survey.

Fidelity criteria are increasingly used in program monitoring and evaluation, but are difficult to derive for emerging models (i.e., those not based on theory or a research demonstration project). We describe steps used to develop and operationalize fidelity criteria for consumer-run (CR) mental health services: articulating and operationalizing criteria based on published literature, then revising and validating the criteria through expert judgments using a modified Delphi method. Respondents rated highest those structural and process components emphasizing the value of consumerism: consumer control, consumer choices and opportunities for decision-making, voluntary participation (and the absence of coercion), and respect for members by staff.

Community Mental Health Services↗

Evaluation of the medical history.

Medical and dental interdisciplinary cooperation is critical in appropriate assessment of the medical history and the subsequent management of the medically compromised dental patient. This interdisciplinary, rather than multidisciplinary, cooperation must extend beyond the physician and include the patient, family, caregivers, therapists, and anyone else involved in the life of the particular individual. This article has discussed numerous medically compromising conditions that require cooperative efforts between dental health professionals and other health care professionals. Specific recommendations were made regarding certain medical problems that affect dental care. The patient with a medical condition has a significant disability affecting many facets of life, essentially no different than a person with a physical or mental disability. The critical activity on the part of the dentist in managing the medically compromised dental patient is the cognitive skill ability. Cognitive skills permit appropriate use of the proper technique and behavioral skills. Proper oral health care can contribute significantly to a person's quantity and quality of life. The concept of optimum dental treatment planning differs from ideal dental treatment planning but should not be considered compromised dental treatment planning. Finally, an evaluation tool, the DRAPE Scale, is a means to aid dental treatment planning for the medically compromised dental patient. Remember that optimum care may not be ideal and is influenced by patient-specific and situation-specific circumstances. When this approach to treatment is followed in the appropriate interdisciplinary fashion, the patient benefits, and an individual's quantity and quality of life should benefit. Dental care for the patient with medically compromising conditions can be difficult and infinitely challenging but ultimately rewarding.

Decision Making↗

Managing family problems in advanced disease--a flow diagram.

The interaction between patient, family and professional team can sometimes make difficult situations worse rather than better. This flow diagram attempts to clarify the process by which a professional assesses situations and suggests ways in which people can gain understanding about their difficulties. Once everyone has a greater understanding of what is or is not happening, the diagram points to ways in which professionals can use questions to help patient and family create a solution that is workable both for them and for the professionals.

Adaptation, Psychological↗

The subtle politics of organ donation: a proposal.

Organs available for transplantation are scarce and valuable medical resources and decisions about who is to receive them should not be made more difficult by complicated calculations of desert. Consideration of likely clinical outcome must always take priority when allocating such a precious resource otherwise there is a danger of wasting that resource. However, desert may be a relevant concern in decision-making where the clinical risk is identical between two or more potential recipients of organs. Unlikely as this scenario is, such a decision procedure makes clear the interdependence of organ recipient and organ donor and hints at potential disadvantages for those who are willing to accept but unwilling to donate organs (free-riders). A combined opting-out and preference system weakens many of the objections to opting-out systems and may make the decision to donate organs on behalf of their deceased relatives easier for families.

Ethics, Medical↗

Part II. Evidence-based medicine: a passing fancy or the future of primary care?

Reliable experimental evidence provides a firm scientific foundation for only a minority of the clinical decisions primary care practitioners must make each day. Thus clinicians' experience and judgment must complement and supplement their knowledge of published research studies. This presents a dynamic and difficult challenge to the practitioner--one that is magnified when combined with the never ending influx of medical information, with patients' and physicians' uneasiness with clinical uncertainty, and with new external pressures to standardize care. With these factors in mind, this article will review evidence-based medicine, a process and philosophy for the practice and teaching of clinical medicine that has sparked much controversy in recent years. Clinical scenarios commonly encountered in adult primary care--acute low back pain, hypertension, and screening for vascular disease--illustrate some strengths and limitations of evidence-based medicine.

Evidence-Based Medicine↗

Ethical issues in informed consent. Research on medical cost containment.

The decision to contain medical costs, which is a political and social decision, entails restriction of medical services. To guide public policy, research on the impact of such restriction must be carried out, but this type of research differs significantly from most other medical research. Difficult issues concerning informed consent arise, with potential conflicts among principles of maximization of good and minimization of harm to the patient, the patient's right to self-determination, and the utilitarian goal of maximization of collective welfare. We have discussed these principles in the context of relationships between patient and physician and between subject and investigator. Approaches considered include emphasis on retrospective studies, use of statistical techniques to formulate clinical decision-making rules on the basis of available data, three-celled randomization designs, and the role of the primary-care physician in maximizing patient autonomy and minimizing the potentially threatening aspects of informed consent for such studies.

Clinical Trials as Topic↗

The importance of data in improving practice: effective clinical use of outcomes data.

We are in a transition stage from the widespread use of clinical judgment to the use of risk-adjusted outcomes data for clinical decision-making and quality assessment and improvement. The ultimate long-term goal for the use of predicted outcomes is to be able to inform patients at the earliest state of their symptoms as to the anticipated course of their disease and the results of alternative therapies. For outcomes analyses to be routinely used in clinical practice, they must be formulated succinctly. Because a small number of adverse outcomes may make a big difference in outcome statistics over a short period such as a year, it is important that purchasers of health services take a longer-term view. The demand for public disclosure of every aspect of medical therapy is on the increase, and it is likely that each physician, hospital, specialty group, and so on, is likely to receive some type of report card in the near future. However, I believe it will be very difficult to educate the public, given the enthusiasm we currently see in the press for producing headlines that are not always supported by the facts in the article. Although the importance of outcomes data is unquestioned, it is important to remember that our methods for utilizing the data are still somewhat infantile. Therefore, it is important for us as a profession to question the accuracy and the interpretations of outcomes data.

Cardiac Surgical Procedures↗

Ethnicity and attitudes towards life sustaining technology.

The ethical and legal implications of decisions to withhold and withdraw life support have been widely debated. Making end-of-life decisions is never easy, and when the cultural background of doctor and patient differ, communication about these issues may become even more difficult. In this study, we examined the attitudes of people aged 65 and older from different ethnic groups toward foregoing life support. To this end, we conducted a survey of 200 respondents from each of four ethnic groups: European-American, African-American, Korean-American and Mexican-American (800 total), followed by in-depth ethnographic interviews with 80 respondents. European-Americans were the least likely to both accept and want life-support (p < 0.001). Mexican-Americans were generally more positive about the use of life-support and were more likely to personally want such treatments (p < 0.001). Ethnographic interviews revealed that this was due to their belief that life-support would not be suggested if a case was truly hopeless. Compared to European-Americans, Korean-Americans were very positive regarding life-support (RR = 6.7, p < 0.0001); however, they did not want such technology personally (RR = 1.2, p = 0.45). Ethnographic interviews revealed that the decision of life support would be made by their family. Compared to European-Americans, African-Americans felt that it was generally acceptable to withhold or withdraw life-support (RR = 1.6, p = 0.06), but were the most likely to want to be kept alive on life-support (RR = 2.1, p = 0.002). Ethnographic interviews documented a deep distrust towards the health care system and a fear that health care was based on one's ability to pay. We concluded that (a) ethnicity is strongly related to attitudes toward and personal wishes for the use of life support in the event of coma or terminal illness, and (b) this relationship was complex and in some cases, contradictory.

Black or African American↗

The role of national ethics commissions in Finland.

There are six national ethics commissions in Finland. The National Advisory Board on Research Ethics was first established in 1991, followed by the National Advisory Board on Biotechnology and the Board on Gene Technology in 1995. The National Advisory Board on Health Care Ethics was established in 1998, followed by its Sub-Committee on Medical Research Ethics in 1999. The Co-operation Group for Laboratory Animal Sciences was established in 2001. Only the Board on Gene Technology works as a national authority and gives binding opinions and recommendations about the use of genetically modified organisms. The Sub-Committee on Medical Research Ethics acts a national research ethics committee and gives opinions about research projects. Other advisory boards do not make legally binding decisions, but their expertise gives a lot of power to their opinions and statements. The commissions work in close collaboration with each other, having regular meetings. They arrange seminars and conferences, and share information with each other. The commissions also share duties and information in international collaboration. How the voice and opinions of these commissions is heard in society lies in the wide, multi-professional expertise of their members. Large commissions and wide expertise may make it difficult to find consensus in their opinions and statements, although wide expertise may, more than discussion in a small expert group, help to further process difficult ethical issues. Collaboration between different bodies is important in order to share duties, and also to add more emphasis to the statements and opinions where different bodies share interests. In our country, the interest that national commissions share is research ethics, where the advisory boards and their members have discharged collaborative activities for years.

Advisory Committees↗

State of the art of guidelines.

Guidelines have existed in medicine for many centuries. Galen's doctrine of laudable pus sent many to an early grave, but variance in treatment put the practitioner in a difficult position, especially if all did not go well. Currently, guidelines proliferate, allegedly based upon careful evaluation of evidence culled from a variety of sources. However, obedience to guidelines is variable internationally and nationally, thus raising questions about their enforceability. They are, of course, not legally enforceable, but courts may be influenced by them, and variation must be evidence-based. Guidelines cannot logically be regarded as being set in stone; if that were the case, then there could be no innovation and medicine would not advance.

Decision Making↗

Advance care planning in long-term care facilities.

Residents of long-term care facilities are at risk of serious medical illnesses and being unable to express choices when difficult treatment decisions must be made. Advance care planning (ACP) allows residents to consider, make, and communicate their preferences for how medical decisions should be made if they are unable to participate in the decision-making process. This article reviews the three steps in ACP: consideration of options and expression of values, communication of decisions, and documentation of the choices. The article defines and describes the particular value of ACP in long-term care facilities, reviews the literature on successful ACP programs in long-term care, and concludes with practical suggestions on how to develop and implement ACP programs.

Advance Care Planning↗

Strategic planning. From the ground up: planting the seeds of network development.

It is critical to understand and accept the intense effort and planning needed for successful network development. No model exists that can be immediately implemented successfully. Every organization involved in network development will have to become familiar with the issues, benefits and risks, as well as involve the key stakeholders, which include administration, board and health professional providers from physicians through allied professionals. The outcome of this development can be a very successful, efficient new delivery model that will benefit the users, the payers and the providers. Although difficult and sometimes boring, the methodical and thorough movement through the process of developing a regional community network can greatly enhance outcome. The shared vision of the network should be exciting, and should make participants search for the clear image of what will be developed. All should work jointly as partners to accomplish that vision. Although there may be facilitation and assistance, it will be the providers and stakeholders who will be most affected by the network. It is their commitment, effort, energy and experience that will lead to success.

Comprehensive Health Care↗

Prosthodontic research: breaking traditional barriers.

There is considerable concern among leaders in both academia and the prosthodontic profession about the vitality of prosthodontic research and the discipline in general. Many feel that prosthodontics should be focused more on issues of societal significance. In addition, patient-oriented research is becoming more difficult to support within the current climate of ever-lower priority for discipline-based research.A break with traditional lines of enquiry is required, which will entail a corresponding break with established departmental boundaries, to gain access to a multiplicity of complementary skills. Several themes will be crucial in future prosthodontic research: clinical decision making, including health economics; materials science and host response at the implant interface; biocompatibility, functional properties and serviceability of prosthodontic materials; and function and dysfunction of the masticatory system. These themes are at the core of future projects that will address quality-of-life issues related to tooth loss. Prosthodontic researchers will have to be far more aggressive in developing synergistic collaborative arrangements, to align prosthodontic research with the major issues of the day, such as aging of the population, health disparities and access to preventive strategies. Through these collaborations, prosthodontics will remain a flagship discipline within dentistry, and its practitioners will be engaged in the major issues of health care.

Dental Research↗

Inherited cancer and the primary care physician. Barriers and strategies.

Difficulties faced by primary care physicians as they increase their responsibility for the diagnosis of inherited cancer risk include issues of cognitive strategy, the context of care, and cultural and institutional factors. Charateristics common to many genetic disorders--such as rarity, variability, implications for relatives, and temporal pattern--render our usual cognitive strategies less effective. Constraints of managed care, care teams, and high turnover of panels create a particularly difficult context for the care of people at risk for inherited cancer. Echoes of the eugenics movement, the implications of expanding genetic knowledge, and concerns about discrimination all complicate collaborative clinical decision making. Eight strategies are suggested to cope with these barriers to diagnosis. Primary care physicians also face challenges managing patients identified as at increased risk for inherited cancer. These include confidentiality, coordination and communication. Concerns for protecting the patient's confidentiality can inadvertently leave primary care physicians with partial information. Coordination is complicated when multiple organ systems and individuals are at risk, and knowledgable specialty centers may be distant. Communication requires sensitivity and skill in translating complex concepts from molecular biology and statistics into lay terms. Seven strategies are suggested to help with management.

Adult↗

Widening the debate? Consultation and participation in local health care planning in the English and Swedish health services.

In both English and Swedish health care, there is currently much interest in encouraging public consultation and participation in public service planning in order to improve quality, enhance local accountability, and help to inform and legitimize difficult decisions about health care priorities. This article explores the progress of local budget holders for health services in the two countries--primary care groups/trusts in England and county councils and municipalities in Sweden--in developing consultative and participative processes. Using secondary and primary research methods, the study identified much activity among English primary care groups/trusts, although with less certainty of outcome. In Sweden, initiatives were limited to a few county councils, were more distinctive, and in the case of one county council, resulted in the sustained channeling of citizens' views. In comparing and contrasting the approaches in the two countries, the authors note the importance of political cultures and institutional arrangements as well as, more generally, the complexities and challenges of consultation and participation in health care planning.

Community Health Planning↗

Managing Medicaid managed care: are states becoming prudent purchasers?

This paper examines the extent to which five states are becoming "prudent purchasers" in their oversight of Medicaid managed care. Our conclusions are mixed. These states are making more sustained efforts along these lines than most private purchasers are and have improved the amount and quality of the data they collect on the experiences of Medicaid clients when compared with the traditional fee-for-service program. They have been less successful in ensuring data quality that is adequate to support contracting decisions and in developing the analytical or political capacity to use data to "manage" the managed care system. Becoming a prudent purchaser appears to be a complex task for states that may prove difficult to achieve.

Contract Services↗

Trust violated: analgesics for addicts.

Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital (MGH), founded The Kenneth B. Schwartz Center at MGH. The Schwartz Center is a nonprofit organization dedicated to supporting and advancing compassionate health care delivery that provides hope to the patient, support to caregivers, and encourages the healing process. The Center sponsors the Schwartz Center Rounds, a monthly multidisciplinary forum where caregivers reflect on important psychosocial issues faced by patients, their families, and their caregivers, and gain insight and support from fellow staff members. Addiction among cancer patients on strong analgesics is a rare but difficult management challenge. The case is presented of a 28-year-old woman with breast cancer and painful bone metastases, suffering with dysfunctional social chaos and addicted to Percocet (oxycodone and acetaminophen). Having broken the trust of her health care team, trust was rebuilt by incorporating the substance abuse clinic and enforcing a contractual agreement. With open and honest support, the team was able to both care for and empower the patient. Issues of trust, liability, opioid tolerance, and barriers to optimal analgesia for cancer pain are discussed.

Adult↗