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Biomedical subjects

D Casarett

Publications and source records attributed to D Casarett.

17 recordsLinked to original sources

Patients with cancer referred to hospice versus a bridge program: patient characteristics, needs for care, and survival.

PURPOSE: The purpose of this study was to compare the characteristics and needs of patients with advanced cancer who were referred to hospice with those referred to a prehospice "bridge" program that is staffed by hospice nurses. PATIENTS AND METHODS: Data were gathered through retrospective review of computerized clinical records using precoded data fields of 284 patients with cancer enrolled in a bridge program and 1,000 who enrolled in a hospice program. Patient characteristics, needs for supportive care at the time of enrollment, and survival were assessed. RESULTS: Bridge patients were less likely to have Medicare or Medicaid (43% v 72%; odds ratio, 0.30; P <.001) and were younger (69 v 73 years, rank sum test; P <.001), more likely to be married (59% v 43%; odds ratio, 1.90; P <.001), and more likely to be in the highest income category (14% v 10%; odds ratio, 1.77; P =.009). Bridge patients had at least as many needs for care as did patients in hospice. Bridge patients lived significantly longer (median, 46 v 19 days; log-rank test of survivor functions, P <.001). CONCLUSION: Patients referred to this bridge program had prognoses that are significantly better than those of patients who enter hospice, but they have needs for supportive care that are at least as great. These findings underscore the importance of initiatives to extend some of the benefits of hospice care to a wider population of patients and should encourage the analysis of similar programs' ability to meet these needs.

Aged↗

How do AD patients and their caregivers decide whether to enroll in a clinical trial?

To examine how patients and caregivers decide whether to enroll in a clinical trial, the authors conducted semi-structured interviews with 22 family caregivers of patients with mild to moderate AD who were recruited for a clinical trial. They found that a caregiver who enrolls a patient in research generally involves the patient in the decision-making process, reports that the patient shares in the decision, and regards the risks and benefits to the patient and to the caregiver as interdependent.

Alzheimer Disease↗

Life after death: a practical approach to grief and bereavement.

This consensus paper describes the essential skills that clinicians need to help persons who are experiencing grief after the death of a loved one. Four aspects of the grieving process are reviewed: anticipatory grief, acute grief, normal grief reactions, and complicated grief. Techniques for assessment and recommendations about interventions and indications for referral are provided for each aspect.

Adaptation, Psychological↗

Obtaining informed consent for clinical pain research: patients' concerns and information needs.

Investigators who conduct clinical pain research are required to obtain voluntary informed consent from patients. However, little is known about what information patients expect when they decide whether to enroll in such studies. It is important that investigators understand these information needs so they can effectively and clearly describe the research risks and potential benefits that matter to potential subjects. By understanding these needs for information, investigators may also be better able to anticipate patients' concerns and to recruit subjects more efficiently. This study was designed to define information needs that patients have when they decide whether to participate in clinical pain research. This paper describes these information needs, and identifies clinical and demographic variables associated with specific needs.

Adult↗

Designing pain research from the patient's perspective: what trial end points are important to patients with chronic pain?

OBJECTIVES: The goals of this study were to define the endpoints of pain research that are important to patients with chronic pain and to identify clinical and demographic variables that are associated with patients' choices of endpoints. PATIENTS & SETTING: Interviews were completed with 40 patients seen at the anesthesia pain clinic of an urban tertiary care medical center. DESIGN: Each patient was presented with 4 brief (3-4 sentences) fixed information vignettes describing studies in which new medications would be evaluated. For each, patients were asked to describe how the medication being studied might offer an improvement over their current therapy. OUTCOME MEASURES: Measures included structured qualitative analysis of responses, the Brief Pain Inventory, and Global Distress Index of the Memorial Symptom Assessment Scale. RESULTS: Patients described a total of 20 endpoints. Individually, patients cited between 2 and 9 endpoints each (mean 4.9, standard deviation 1.7). Of these, the most commonly cited were decrease pain, decrease opioid dose, decrease frequency of scheduled dose, increased ability to function, decrease frequency of breakthrough dose, and improve sleep. Patients with severe pain cited more endpoints than did those with mild or moderate pain (mean 5.5 vs. 4.3; Rank sum test p = 0.01). CONCLUSIONS: These data suggest that empirical research can provide data to guide the choice of endpoints in clinical studies of pain interventions.

Journal Article↗

The relationship between caregivers' global ratings of Alzheimer's disease patients' quality of life, disease severity, and the caregiving experience.

OBJECTIVES: To compare caregivers' ratings of Alzheimer's disease (AD) patients' global quality of life (QOL) using direct assessments and substituted judgments, and to identify qualities of the patients and their caregivers that are associated with these QOL assessments. DESIGN: Cross-sectional interviews. SETTING: A university-based Memory Disorders Clinic. PARTICIPANTS: Forty primary caregivers of AD patients. MEASUREMENTS: Direct scaling of overall quality of life (poor, fair, good, very good, or excellent) and measures of dementia severity, the caregiving experience, and patient and caregiver demographics. RESULTS: The majority of patients had mild (n = 20) or moderate (n = 11) AD. Caregivers' direct assessments of patient QOL were poor (5%, n = 2), fair (28%, n = 11), good (40%, n = 16), very good (20%, n = 8), and excellent (8%, n = 3). Twenty-one (52.5%) of the caregivers rated the patient's QOL the same as they thought the patient would; 12 (30.0%) rated the patient's QOL worse; and seven (17.5%) rated the patient's QOL better. Agreement between the two ratings was fair to moderate. Bivariate analyses showed that lower ratings of caregivers' direct assessments of patient QOL were associated with decreasing ratings of patient mental health and increasing dementia severity, caregiver burden, and caregiver depression. Multivariate models showed burden to be the significant predictor of caregivers' rating of patient QOL and the subscale measuring the caregivers' distress at controlling patient behavior had the strongest association with QOL. Lower ratings of substituted judgment assessments of patient QOL were associated with lower caregiver ratings of the patient's mental health. CONCLUSIONS: Nearly one-half of the caregivers of patients with predominantly mild to moderate AD assess a patient's QOL differently than they believe the patient would. Dementia severity and the caregiver's experiences of depression and burden negatively affect caregivers' assessments of QOL. These results provide a compelling reason why clinicians should take the time to screen for and address caregiver depression and burden and problematic patient behaviors.

Adult↗

NHPCO Task Force Statement on the Ethics of Hospice Participation in Research.

There is an urgent need for robust empirical data to guide the assessment and treatment of patients near the end of life. Because they are important providers of end-of-life care in this country, hospices have an important role to play in facilitating this research. However, hospices may also face considerable ethical challenges in doing so. This task force statement begins by discussing the importance of hospices' potential contributions to research. Next, we describe ways in which characteristics of hospice patients, and hospices' structure, create ethical challenges that may limit these contributions. We conclude by proposing ways in which hospices and national professional organizations can begin to overcome some of these challenges.

Ethics Committees, Research↗

Addressing the ethical challenges of clinical trials that involve patients with dementia.

Research subjects face uncertainties, risks, burdens, and indignities, and research protocol requirements inhibit the physician's ability to make individualized treatment decisions. To address these problems, investigators and Institutional Review Boards (IRBs) should justify research risks using informed consent and the judgment that the risks of research are reasonable with respect to the potential benefits, if any, to subjects and to the expectation that the research will produce important knowledge. But clinical research in Alzheimer's disease (AD) presents investigators and IRBs with significant challenges to achieve these two requirements. Broadly, these challenges are the result of the impact of patients' cognitive impairment and the caregiving experience on decision making and the indeterminacy of defining clinically meaningful treatment benefits. In this article, we review the data that begin to answer whether and how patients' cognitive impairments and the caregiving experience impact on their decision making and what kinds of research results justify research risks. We will use these data to suggest changes to the design and conduct of clinical research in AD that can meet the challenge of justifying research risks.

Alzheimer Disease↗

Determining when quality improvement initiatives should be considered research: proposed criteria and potential implications.

Quality improvement initiatives have become a major force in shaping health care. These initiatives are diverse but share a common goal of generating knowledge that will guide improvements in health care. Although quality improvement occupies an uncertain territory between clinical care and research, this difference is extremely important. If a quality improvement initiative is research, federal regulations require a variety of procedures that must be followed to protect the human subjects involved. Conversely, if the same initiative is not research, the regulations outlining these procedures are not applicable. This article proposes 2 criteria to determine whether a quality improvement initiative should be reviewed as research. Such an initiative should be reviewed and regulated as research if (1) the majority of patients involved are not expected to benefit directly from the knowledge to be gained or (2) if additional risks or burdens are imposed to make the results generalizable. Implementation of these criteria offers the possibility that the rights and interests of those who participate in quality improvement initiatives will be protected.

Ethical Review↗

Systems errors versus physicians' errors: finding the balance in medical education.

In recent years, identifying the origins of medical errors has been aided by a growing awareness that such errors are frequently the result of flaws in the system. In short, they are "accidents waiting to happen." Despite the value of the systems approach in identifying and preventing errors, it creates a difficult ethical problem for medical educators. Evidence suggests that when physicians ascribe errors to systemic causes, they may be less likely to modify their future behaviors and thus will be more likely to repeat past errors. Therefore, academic medical centers (i.e., teaching hospitals) must achieve a delicate balance that protects patients from the error that a systems approach can identify, yet provides optimal education for house officers by teaching them to focus also on personal reasons for errors. The authors suggest that this balance can be achieved by having residency programs work aggressively to remove the obstacles that house officers predictably encounter when they look for the personal causes of error (e.g., being shamed, feeling fear and inadequacy). Programs must also encourage house staff to disclose their errors and make constructive changes in their own behaviors, encouraged and guided by role models. The article concludes with discussion of these and related strategies to achieve the desired balance between the use of a systems approach and a personal-responsibility approach to managing errors in academic medical centers.

Academic Medical Centers↗

Unilateral do-not-attempt-resuscitation orders and ethics consultation: a case series.

OBJECTIVE: To describe the role of an ethics consultation service in unilaterally withholding cardiopulmonary resuscitation. DESIGN: Retrospective case series of 31 ethics consultations regarding unilateral do-not-attempt-resuscitation orders between 1992 and 1996. SETTING: A large, urban, academic medical center. MEASUREMENTS AND MAIN RESULTS: Patient characteristics, physicians' rationale for withholding cardiopulmonary resuscitation, ethics consultants' recommendations, and patient outcomes were measured. The consultation service agreed with the medical team's intent to withhold cardiopulmonary resuscitation in 25 cases, but a unilateral do-not-attempt-resuscitation order was written in only seven of these. In 17 cases, the disagreement between the physician and the patient or surrogate over code status was resolved in a conference organized by the ethics service. CONCLUSIONS: The process of ethics consultation is useful in resolving disagreements over withholding cardiopulmonary resuscitation and other treatment and can frequently result in a consensus. Hospital policies that permit unilateral treatment limitation should be based on a model that is process-based and that encourages interdisciplinary participation in decision-making, such as that recently proposed by the Houston Task Force.

Academic Medical Centers↗