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PubMed1997

Measuring care: the case of district nursing.

This paper describes a district nursing study that considered the experiences and responses of primary health care professionals and their patients to changes taking place within the community. As a qualitative study it employed interviews as the main method of data collection and was informed by both ethnography and interpretative phenomenology. Forty-three study participants were interviewed, eliciting opinion on whether care is more than just a hands-on activity, whether patient need is being met and to what extent service policy is in tune with care delivery. Describing the views of primary health care professionals and patients in order to illustrate the complexity of the district nursing service and professional roles, the paper finds little shared vision between staff and managers of each other's responsibilities. It concludes that a more holistic approach to understanding professional roles is needed in order to satisfy the differing agendas of managers, staff and patients. It propounds the need for closer collaborative practice between health care professionals, for it finds that they value the ability to communicate as an essential element of their jobs. It reflects that, without such collaboration, it will be difficult for nurses to take a lead position on changes shaping community care.

Adult↗

PubMed2005

When a child cannot be cured - reflections of health professionals.

This article reports on a study exploring the challenges and complexities of caring for a child with cancer no longer responding to curative therapy. The difficulties that health professionals face when initiating and providing palliative care to children with cancer is largely unexplored. A greater understanding of these challenges is needed to inform the development of effective models of care. Participatory group discussions and in-depth interviews were used to explore how health professionals from three disciplines - nursing, medicine and social work - view their role during the shift from cure to palliation. Interviews were tape-recorded and transcribed verbatim. Content and thematic analysis was used to identify themes and important messages in the transcripts. This study illustrates how the trajectory of childhood cancer is characterized by uncertainty, especially following relapse where there is reduced clarity surrounding the child's outcome. Prognostic uncertainty and continued hope for survival make the shift to palliation difficult, raising questions about the applicability of traditional palliative care models for these children and their families. Decision making in this context is complicated by a lack of clarity, uncertainty and continued hope. Shifting the focus of care from cure to palliation is not experienced as a discrete event but rather, as an awareness and acceptance that slowly develops. New models of care that incorporate palliative care throughout the disease trajectory are recommended.

Adaptation, Psychological↗

PubMed1992

Agreement between patients and their self-selected surrogates on difficult medical decisions.

BACKGROUND: Several studies have demonstrated that surrogate decision makers often are unable to use substituted judgment when asked to make decisions for incompetent patients. This study further explored this question, using a relatively young, healthy sample of 50 patient/surrogate pairs. METHODS: Patients were randomly recruited from a community family practice clinic and asked to select a surrogate. Five case vignettes were presented to patients and surrogates during separate interviews. Vignettes asked for decisions related to ventilation, resuscitation, and tube feeding for a patient in permanent coma, amputation as life-extending treatment for a mentally confused patient, and chemotherapy for a decisionally incapacitated patient with advanced cancer. Factors considered important to decision making were also investigated. RESULTS: As groups, patients and surrogates were similar as they chose to withdraw or continue treatment in the same proportions. However, within individual pairs, agreement on treatment occurred only 70% of the time even though surrogates were asked to base their treatment decisions on substituted judgment. The kappa coefficients indicated that the rate of agreement in individual vignettes was low. Patients considered "burden on the family" and "time left to live" as the most important factors in choosing among difficult treatment options, while surrogates identified the patients' pain as the most important factor. CONCLUSIONS: The high rate of discrepant decisions underscores the importance of effective patient-surrogate communication before medical decision-making incompetence occurs. The potential of increasing patient-surrogate agreement on difficult medical decisions by educational interventions should be explored.

Adult↗

PubMed2002

General practitioners' attitudes and ethical decisions in end-of-life care after a year of interactive Internet-based training.

BACKGROUND: Personal characteristics affect physicians' end-of-life decisions. Education in palliative care (PC) faces a challenge in influencing doctors' attitudes and decision making in PC. A one-year Internet-mediated education project was arranged for general practitioners in Finland to provide postgraduate education in PC. METHODS: A questionnaire was sent before and after the project to the education group (EG, n = 79) and a control group (CG, n = 100). Treatment decisions for presented scenarios and attitudes toward PC were elicited. RESULTS: EG doctors had previously participated in postgraduate training in PC more often than had CG doctors (93% vs 29%). For a young terminal cancer patient, EG doctors chose CPR less often than did CG doctors (7% vs 33%, p = 0.004); 30% of EG doctors would have continued antibiotic treatment in the case of a terminal cancer patient, vs 55% of CG doctors (p = 0.023). EG doctors more often agreed with the statement "Terminal care is satisfying" (p < 0.001). Treatment decisions or attitudes did not change significantly in either group during the year, the EG doctors were more satisfied with their work after the project. CONCLUSION: There are substantial differences in decision making between those who have experience and special interest in the subject and those who do not. To achieve the goals of education in PC, the most difficult target group, the "silent majority" of doctors, should be reached.

Attitude of Health Personnel↗

PubMed1989

Ethical issues in clinical research. Informed consent and risks versus benefits in the treatment of primary hypertension.

Clinical research involves a number of ethical issues for the nurse researcher and clinician. When new treatments, such as experimental drugs, are used in patient care, the issues of informed consent to treatment and the balancing of risks and benefits may be especially difficult to resolve. By understanding the functions and elements of informed consent, nurses can assist their patients to ask for and to comprehend the information they need to be truly and fully informed about treatment choices. Likewise, assessing the risks and benefits of an experimental treatment option, such as an experimental drug for the treatment of primary hypertension, may be important to the long-term health of patients. Nurses assist patient decision making and the assessment of relevant risks and benefits by being fully informed about the planned research and by applying knowledge of ethical principles to patient care. When nurses incorporate this type of ethical reflection and moral skill into nursing practice, they meet minimal moral obligations to patients.

Antihypertensive Agents↗

PubMed1997

Problems and promises of the protocol.

Creating protocols (or guidelines, standards) for medical work is becoming big business. The pros and cons of protocols have been reiterated many times: advocates argue that protocols may enhance the quality of care, reduce unwanted variations in practice, and may help to render medical practice more scientific. Critics, on the contrary, argue that protocols will lead to cookbook medicine, to de-skilling, and to a reduced quality of care. In the continuing reiteration of these claims, they have more and more become removed from the actual practices of medical work and of the creation and use of protocols. Building on empirical research of these practices, this paper attempts to revitalise the debate. Four problems of the protocol are discussed: the protocol reinforces the tendency to perceive and describe medical action as an individual, formally rational process; the protocol contributes to the widespread illusion of the single answer; the protocol contributes to the loss of importance of information and interventions which are difficult to explicate and/or to quantify; and the protocol will lead to an increasing bureaucratisation and regulation of health care practices. Judicious use of protocols has several promises, which are discussed subsequently: explicating a scheme of actions creates a forum for discussion, and delegating parts of the decision-making process to a protocol may lead to personnel acquiring new competences.

Clinical Competence↗

PubMed2003

A survey of the decision-making needs of Canadians faced with complex health decisions.

OBJECTIVE: To describe the decision-making needs of Canadians when faced with 'complex' health decisions characterized by balancing advantages against disadvantages. Although a national report emphasized that public confidence in the health-care system depends on support for personal knowledge and decision-making, there has been no systematic investigation of the Canadian population's decision-making needs. DESIGN: Cross-sectional telephone survey using random digit dialling. PARTICIPANTS: National sample of 635 adults over 18 years of age, living in Canada. RESULTS: Forty-two percentage of eligible contacts participated. Sixty-five percent of contacts reported making 'complex' health decisions, commonly about medical or surgical treatments or birth control, and more commonly by women and by married/separated individuals. Most respondents took an active role in their decisions, often sharing the process with their partner or family. Being younger was associated with a more independent role. Physicians were more often involved in the decisions of respondents with less education. Fifty-nine percent of respondents experienced decisional conflict; more conflict was seen with those who were female and feeling uninformed about options, pressured to select one particular option, and unready or unskilled in decision-making. Less decisional conflict was seen in those who reported birth control decisions and in those who were 70 years and older. Participants used several strategies when deliberating about choices including: information gathering, clarifying their values, and seeking support and information from others. Personal counselling and printed information materials were commonly preferred methods of learning about options. 'Essential' criteria for judging satisfactory decision-making included: having sufficient knowledge about the options, outcomes, and probabilities; being clear about values; selecting and implementing a choice that agrees with personal values; and expressing satisfaction with the choice. CONCLUSIONS: Canadians, particularly women, face difficult decisions and need support and information from credible sources.

Adolescent↗

PubMed1978

The 'no lose' philosophy in medicine.

This article as the series title suggests focuses our attention on decisions, both medical and ethical, which face doctors and related personnel in the medical profession daily. Many of these decisions take the form of a choice to one thing or another without being very sure of the outcome of either action. Mr Galbraith explores the pros and cons of what he calls the 'no lose' philosophy in medicine and which plays a large part in medical decision making. He concludes that possibly we may need a new philosophy rather than continuing to use more and more of our resources on care, which is perhaps being carried out as a means of avoiding making value judgements and thus possibly, prevents us from solving some of today's difficult ethical problems.

Decision Making↗

PubMed2006

Extending the understanding of computerized physician order entry: implications for professional collaboration, workflow and quality of care.

OBJECTIVE: To describe the perceived effect of computerized physician order entry (CPOE) on professional collaboration, workflow and quality of care. DESIGN: Semi-structured interviews with experts involved in the design, implementation and evaluation of computerized physician order systems in the United States. MEASUREMENTS: The interview transcripts were analyzed using six key concepts that identify context, professional collaboration, workflow and quality of care. RESULTS: The interviews reveal the complexity of CPOE. Although providers enter the orders, others collaborate in the decision-making process. There is a profound impact on workflow beyond that of the provider. While quality of care is the main impetus for implementation, it remains terribly difficult to measure the impact on quality. CONCLUSIONS: A proper understanding of CPOE as a collaborative effort and the transformation of the health care activities into integrated care programs requires an understanding of how orders are created and processed, how CPOE as part of an integrated system can support the workflow, and how risks affecting patient care can be identified and reduced, especially during hand-offs in the workflow.

Cooperative Behavior↗

PubMed2002

Objectives for advance care planning.

Identifying objectives for advance care planning (ACP) is an important step toward improving care at the end of life. Previous studies of ACP have used many different measures of success. However, there has been no consensus on what should be the objectives for ACP. Lack of attention to specific objectives for ACP may lead to ineffective communication and research. The first step to improving outcomes in ACP is to acknowledge the diversity of objectives that ACP may achieve. Health care providers, patients, and surrogates should identify and agree on common objectives for particular conversations. Various methods, conversations, and forms may be used to achieve these objectives over time. Clarifying objectives from various perspectives is an important step toward achieving the level of understanding necessary to make these difficult decisions. It is time for physicians to reconsider the way in which they think about and discuss ACP with patients. If we are to improve care at the end of life, future patient care, research, and education about ACP should proceed with specific objectives in mind.

Advance Care Planning↗

PubMedDate not supplied

The importance of good record-keeping for nurses.

Good record-keeping is a mark of the skilled and safe practitioner, yet allegations concerning shortcomings in nurses' record-keeping were the second most common category of hearing brought before the UKCC in 2000-2001. The absence of accurate records makes it difficult for practitioners to prove they provided appropriate care should they be asked to do so in a professional or legal hearing. This is particularly pertinent since litigation against health professionals is increasing rapidly. This article discusses the importance of keeping comprehensive and accurate records of patient care and decisions from the perspective of nurses, their patients and colleagues. It also discusses the elements of good record-keeping, as well as practices to avoid.

Documentation↗

PubMed1993

Trends in program project grant funding at the National Cancer Institute.

In summary, analysis of the P01 program indicates that differences exist in scores and funding requirements between purely basic and translational P01s; P01 funding has been stable and the P01 policies consistent; growth in average costs for P01s has lagged compared to R01s; P01 grantees have a higher success rate than R01 grantees; priority score compression reduces the P01 payline without reducing the number of grants funded; exception funding in P01s expands the number of grants awarded and helps to meet the scientific program needs of the NCI; almost all R01 and P01 applications in the first quartile are funded; comparably ranked R01s and P01s are funded at equivalent percentages of recommended funding levels; the percentage of approved funds awarded declines as scores for R01s and P01s become less favorable. Because the resources available are finite, the NCI carefully considers the competing demands for RPG funds. On balance, however, the P01 program is still in good health. In combination with the other methods we use to make RPG awards, the P01 program is a vital component of our research grant program. Faced with budget realities, however, some difficult decisions have to be made. The NCI is open to suggestions on how to distribute research funds to best promote cancer research throughout the country. The NCI is particularly interested in hearing researchers' perceptions of problems so that, whenever it is appropriate, we can modify our course. There are important questions to consider for the future. Should there be greater or lesser use of RFAs in allocating resources for P01 grants? What algorithm optimally distributes resources among R01s, P01s, and other funding instruments in the RPGs? Should exceptions be used more or less heavily in the P01 funding process? Should other grant programs outside the RPG budget, such as the P50 SPORE program, be used to relieve pressures on the P01 budget? Should the number of projects within P01s be limited? How can peer review groups be given opportunities to provide priority scores that better reflect distinguishable differences in highly meritorious P01s? Should P01 scores be normalized? How could the R01 percentile concept be applied to P01s? How can the results from standing study sections be synchronized with results from ad hoc review groups? What changes in peer review procedures would promote equitable score distributions and budget recommendations across years? How can the NCI provide stability for established P01s without impinging on the ability of new P01s to enter the system?(ABSTRACT TRUNCATED AT 400 WORDS)

Financing, Government↗

PubMed2000

Sedation for intractable distress of a dying patient: acute palliative care and the principle of double effect.

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, which 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. The case presented is of a young man dying of recurrent epithelioid hemangioendothelioma, distressed with stridor and severe pain, whose poorly controlled symptoms were successfully treated with an infusion of propofol, titrated to provide effective comfort in the last few hours of the patient's life. The tenet of double effect, which allows aggressive treatment of suffering in spite of foreseeable but unintended consequences, is reviewed. The patient's parents were invited and contributed to the Rounds, providing compelling testimony to the power of the presence of clinicians at the time of death and the importance of open communication about difficult ethical issues.

Adult↗

PubMed2002

[Reproduction and sexuality in HIV-positive women, Brazil].

OBJECTIVE: To assess sexual and reproductive health needs of HIV-positive women and factors that affect their access to prevention, safer sex practices and treatment and to appraise their ability of making informed choices concerning motherhood. METHODS: This exploratory study was conducted among women of an outpatient clinic in a reference center for STD/AIDS in the city of São Paulo, Brazil, in 1997. A consecutive non-probabilistic sample of 148 HIV-positive women was investigated. The exclusion criteria included those aged under 18 years and who were physically unable. Data were collected using structured interviews. Statistical analysis was performed using Chi-square test and t-test. RESULTS: The participants' mean age was 32 years old. As for education, 92 women (62.2%) had completed elementary school and 12.2% had attended university. The median number of lifetime sexual partners was 4, and half of the interviewees were still sexually active after diagnosed HIV-positive. Of the total, 76% had children and 21% were still thinking about having children in future. Having many children, alive and living with their mothers were determinant factors for not wanting any more children. It was found no association between wanting children, risk perception, partner's serologic status, contraceptive use and other factors. After getting HIV infected, there was a substantial change in the contraceptive methods used. CONCLUSIONS: HIV infection did not change women's desire for having children. HIV-positive women's sexual and reproductive rights need to be discussed and respected in health care settings. Compliance to medication and safe sex practices are essential but difficult to meet requiring both counseling and support. Couples' counseling on reproductive choices is important for preventing infection of negative partners. Supportive services that promote open discussions of the sexual and reproductive rights of HIV-positive women are urgently needed.

Adult↗

PubMed1996

Home care policy in the Netherlands. Reforming legislation to facilitate the provision of multi-disciplinary home care.

In the Netherlands, it is considered necessary to provide multidisciplinary home care to meet the demands of a growing number of patients. Existing legislation must be changed to facilitate the provision of such care. Although this has been an important government policy goal for several years, it has been extremely difficult to fundamentally change legislation. This article presents an analysis of the Dutch system of decision-making on government policy, to explain why this is the case. Using theoretical concepts such as 'interdependence' and 'steering', the authors studied empirical data published by the Willems Subcommittee, a governmental advisory body.

Decision Making, Organizational↗

PubMed1990

Choosing between cancer patients.

The leading ethical problem in medical practice for the coming decade is likely to be how to select patients for priority. Criteria for such decision-making in the case of cancer patients are discussed. Clinicians, ethicists and others need to agree guidelines on giving priority to one patient over another when resources are limited, and such criteria need to be approved by society at large. The public must accept that in a non-explicit rationing system, each individual competes with every other. In the case of even more difficult ethical choices, a multidisciplinary national committee is required to advise on decision-making, and its views need to be debated by the general public.

Advisory Committees↗

PubMed1993

Decision making in case management of home healthcare clients.

Public health nurses face ethical decision-making dilemmas in their everyday practice, but how well are they prepared to make these decisions? This research study examined the decision-making capabilities of nurses in case management in regard to terminating and maintaining services in difficult client situations. The results showed that nurses varied in their decision-making capabilities and that their beliefs about case management were not always carried out in actual practice.

Adult↗

PubMed1994

Can our health services be saved by technology evaluation? The Quebec experience.

The finances to support our health services at their present level are lacking, and much of the shortage is due to new health technologies. Through the utilisation of technology assessment (TA), it is hoped that we may be able to eliminate useless technologies and that the money so saved will allow us to maintain our health care services intact. Such hopes are exaggerated. The uses and limitations of TA are reviewed in the light of recent experience gained with the Conseil d'évaluation des technologies du Québec. Technology assessment has only limited value in exposing ineffective technologies. More often, it can illuminate inappropriate use of technologies. However, its real value lies elsewhere, namely in making difficult choices between different technologies. An example is the choice between expensive, low osmolar contrast media in radiology and the cheaper, high osmolar material which causes more frequent reactions. Credible estimates of how much benefit will result from the commitment of how many extra dollars can facilitate such decisions. However, the user must clearly understand the limitations of cost-effectiveness estimates, which should never be used for policy purposes without full knowledge of all the qualifiers on which the estimates depend.

Canada↗