Palliative Care Decisions Research Articles

The difficulty of predicting mortality in nursing home residents

Prognostic tools or risk scores that accurately estimate mortality risk could provide valuable information for elderly nursing home residents, their families, and physicians when establishing goals of care, such as when considering a shift to palliative care. Several Dutch and US studies found male gender, ADL impairment, age, poor intake, and shortness of breath were consistently associated with higher mortality risk both in dementia patients and mixed nursing home populations. Nevertheless, existing prognostic models exhibit only fair performance in identifying those at high risk of dying, which likely impedes their use. Accurately predicting death is challenging for conceptual and practical reasons. It is clearly time for a new research agenda. Future model development might focus on specific conditions (e.g., pneumonia), alternative treatments, outcomes other than mortality, and identifying the best approach to selecting risk cut-off scores to support palliative care decisions. Further study of risk scores might include using them in developing stepwise care planning processes, combining them with physicians’ own estimates, and using them as educational tools. Developing a balanced view of the mortality-risk score's usefulness in nursing homes will require further validating prognostic models and testing clinical impact in a variety of settings.

Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis

The aim of this study is to synthesize knowledge about the process of shared decision-making (SDM) in palliative care. Medline, EMBASE, CINAHL, PsychInfo, Web of Science were searched with core concepts: shared decisions, patient participation in decision-making, and palliative care. Titles and abstracts were screened according to inclusion criteria (original research, adult patients, Western contexts, decision-making, palliative treatment or setting), yielding 37 articles for analysis. A narrative synthesis was created using the methods of thematic analysis, conceptual mapping, and critical reflection on the synthesis process. Results demonstrate that while a majority of patients want to participate in treatment decisions to some extent, most do not achieve their preferred levels of involvement because decisions are delayed and alternative treatment options are seldom discussed. The literature regarding the process of SDM itself remains scarce in palliative care. Further research is needed in order to better understand the longitudinal, interactive, and interdisciplinary process of decision-making in palliative care.

Parental Hopeful Patterns of Thinking, Emotions, and Pediatric Palliative Care Decision Making

To test the hypothesis that hopeful patterns of thoughts and emotions of parents of pediatric patients receiving palliative care consultative services are related to subsequent decisions, specifically regarding limit of intervention (LOI) orders. Prospective cohort study. Children's hospital and surrounding region. Thirty-three pediatric patients receiving palliative care consultative services who did not have LOI orders at time of cohort entry and their 43 parental adults. Parental levels at time of cohort entry of hopeful patterns of thinking and emotions, in conjunction with perceptions about patients' health trajectories. Enactment of an LOI order after entry into the cohort. During the 6 months of observation, 14 patients (42.4%) had an LOI order enacted. In adjusted analyses, higher levels of parental hopeful patterns of thinking were significantly associated with increased odds of enactment of an LOI order (adjusted odds ratio [AOR], 2.73; 95% confidence interval [CI], 1.04-7.22). Increased odds of LOI enactment were associated to nonsignificant degrees with lower levels of parental positive affect (AOR, 0.44; 95% CI, 0.17-1.12), higher levels of parental negative affect (AOR, 2.02; 95% CI, 0.98-4.16), and parental perceptions of worsening health over time (AOR, 1.72; 95% CI, 0.73-4.07). For pediatric patients receiving palliative care consultative services, higher levels of parents' hopeful patterns of thinking are associated with subsequent enactment of LOI orders, suggesting that emotional and cognitive processes have a combined effect on medical decision making.

Oncology Nurses' Personal Understandings About Palliative Care

To examine how oncology nurses define palliative care, views about who should and should not receive palliative care, and beliefs about palliative care decision making, including who should be involved and how decisions should be managed. Qualitative interviews and analysis. Preferred location of each respondent. 12 nurses representing different aspects of oncology nursing. An interview guide was employed to ensure that specific topics were covered. Interviews were transcribed verbatim. Qualitative analysis consisted of independent, multiple reviews of the transcripts to share initial findings and identify, refine, and reach consensus on major themes and subthemes. Nurses' definitions of palliative care, views about who should and should not receive palliative care, and beliefs about palliative care decision making. Nurses' perceptions of palliative care focused on symptom management. Most did not distinguish between palliative care and hospice and believed that only patients who were near the end of life should receive palliative care. They viewed their role in decisions regarding palliative care to be limited and indirect. Although oncology nurses should be at the cutting edge with regard to palliative care, these nurses' personal understandings could serve to limit care for many patients with cancer who could benefit from it. Education and clinical experience embedded in a continuous quality-improvement model are needed to ensure sustained change that will overcome the multiple, interwoven barriers to providing appropriate palliative care.

Professional relationships in palliative care decision making

Decision making in the context of palliative care is particularly complex given the unpredictable illness trajectories experienced by patients and the number of individuals who may be part of decision-making processes. This study aimed to describe the significant issues that influence the processes of care decision making, from the perspective of patients with advanced illness. Patients (14), family members (7) and health professionals (18) were interviewed and field observations (100 h) of decision-making practices were undertaken in two Australian palliative care services. A systematic approach using grounded theory to collect and analyse the data was used to develop a theory of decision making from the patient's perspective. The main issue experienced by palliative care patients was identified as a lack of involvement in decision making. One of the significant factors affecting the decision process is the type of relationship with health professionals that patients believe enhances their involvement in decision making. This was determined by the manner and focus of the health professional, their trustworthiness as well as the healthcare culture and environment. This paper provides a greater understanding of the perspective of patients in relation to their involvement in decisions related to palliative care.

Effects of a Multimodule Curriculum of Palliative Care on Medical Students

The objective of this study was to investigate the effects of educational intervention using a multimodule curriculum of palliative care on medical students, and to explore significant factors that influence improvement in beliefs of ethical decision-making. A total of 259 medical students enrolled in the "Family, Society and Medicine" course, and accepted a multimodule palliative care curriculum that included a 1-hour lecture, 1 hour of patient contact, 1 hour of literature reading, and 1 hour of discussion. A questionnaire was administered before and after the course to evaluate improvements in medical students' knowledge (principles and clinical management) of palliative care and their beliefs concerning ethical decision-making in palliative care. The students showed significant improvements after the course in their knowledge of the principles of palliative care (pretest 58.4% vs. posttest 73.1%; p less than 0.01) and clinical management of palliative care (pretest 58.8% vs. posttest 67.9%; p less than 0.01). Although their beliefs about ethical decision-making were also improved after the course, the medical students did not have a positive belief of "artificial nutrition and hydration is not always beneficial for terminal cancer patients", with a mean score of only 3.15 and 3.51 (pretest and posttest, respectively; range, 1-5). The logistic regression model showed that improvement in knowledge of either principles or clinical management did not significantly improve beliefs about ethical decision-making. A multimodule curriculum of palliative care for medical students can significantly improve their knowledge on principles of clinical management and beliefs about ethical decision-making in palliative care. As for changes in beliefs about ethical decision-making in palliative care, continued ethical and clinical training is required.

Decision-making in palliative care: the Mental Capacity Act 2005

The Mental Capacity Act 2005 is due to be fully implemented in the UK in October 2007 with some of its provisions having already come into force in April 2007. The Act is concerned with the way in which decisions are made on behalf of those individuals who lack the capacity to make their own decisions. It is therefore expected that the Act will have a significant impact on decision-making within palliative care.

Les soins palliatifs en gériatrie : étude rétrospective de 40 cas

Owing to the very great age and the polypathology of the patients in geriatrics, we are often confronted to the palliative care decision. The purposes of this retrospective study were both to define the criteria leading to palliative care and to analyse the evolution of patients. We analysed 40 files of patients hospitalised in Geriatric internal medicine or Geriatric rehabilitation departments over 11 months. Mean age was 85.4 years and 62.5% of patients were females. Infections, heart failure, general weakness, orthopaedic affections, strokes and cancers were the main causes of hospitalisation. Patients had 3 medical or surgical histories of chronic or cured serious diseases and a MMSE average value of 17.7. The rate of malnutrition was 92% and 90% of patients were very dependent. Severe infections, cancers, heart failure and severe pressure ulcers were the main affections for decision of palliative care. The latter was always decided by the staff with patients or families taking part in 8 cases and being informed in other cases. The palliative care lasted 7 days on average. Morphine was used in 31 cases. No artificial nutrition was introduced. The decision of palliative care is very complex since great age, polypathology, great dependence and high prevalence of cognitive disorders are frequent in this population.

Decision-making in palliative care: A reflective case study

Critical examination of the processes by which we as nurses judge and reach clinical decisions is important. It facilitates the maintenance and refinement of good standards of nursing care and the pinpointing of areas where improvement is needed. In turn this potentially could support broader validation of nurse expertise and contribute to emancipation of the nursing profession.As pure theory, clinical decision-making may appear abstract and alien to nurses struggling in ‘the swampy lowlands’ (Schon 1983) of the realities of practice. This paper explores some of the key concepts in decision-making theory by introducing, then integrating, them in a reflective case study. The case study, which examines a ‘snapshot’ of the patient and practitioner’s journey, interwoven with theory surrounding clinical decision-making, may aid understanding and utility of concepts and theories in practice.

Collegial Disagreements Over Appropriate Palliative Care: A Case Study

The appropriate limit or scope of investigation and treatment of the palliative patient is an evolving and still controversial area. Major differences of opinion persist. This case report highlights such differences. The ethics of decision-making in palliative care are discussed and a series of practical steps that may help in these dilemmas is briefly highlighted.

Issues in prison hospice: toward a model for the delivery of hospice care in a correctional setting.

This paper examines issues in prison hospice care based on the author's nine years experience as a prison hospice worker and trainer and on data gathered by the National Prison Hospice Association (NPHA) from a number of federal and state prison medical facilities with operational or developing hospice programs, including both scatter-bed and hospice unit models, employing inmate hospice volunteers and the services of outside community hospice agencies and volunteers. The paper discusses DNR orders and curative vs. palliative care decisions, pain management, AIDS care, interdisciplinary care teams, staff and volunteer training and supervision, and the need for compassionate early release and community placement programs. The author proposes a set of preliminary guidelines for the delivery of hospice care in the correctional setting.

Evaluating and treating depression in advanced cancer - the application of clinical judgement analysis(CJA) to research and decision-making in palliative care

Evaluating and treating depression in advanced cancer - the application of clinical judgement analysis(CJA) to research and decision-making in palliative care

Medical Aspects of Care for the Person with Advanced Acquired Immunodeficiency Syndrome (AIDS): A Palliative Care Perspective

The classification and natural history of human immunodeficiency virus (HIV) infection is outlined briefly, followed by a detailed consideration of the prognostic factors that form the basis for effective medical communication and decisionmaking in palliative care. The broad clinical spectrum of AIDS and selected management problems are discussed, including palliation by control of oppportunistic infections, neuropsychiatric disorders (including AIDS-related dementia) and safety in the use of corticosteroids. The article ends with consideration of when to stop specific AIDS-related treatments in advanced disease.

A Quantitative Analysis of Palliative Care Decisions in Acute Nonlymphocytic Leukemia

With the increasing incidence of cancer in elderly patients, decisions to adopt palliative care become particularly relevant to this patient population. In order to define characteristics of decisions to adopt palliative care, including those factors influencing whether a particular patient received palliation, the frequency of this therapeutic posture, and the duration of this treatment period, we performed a retrospective analytical survey of all patients with acute nonlymphocytic leukemia (ANLL) treated at Duke University Medical Center over the past ten years. Logistic regression analysis identified several potentially significant variables influencing the decision to adopt palliative care. Using a stepwise logistic model, the only independent variable associated with adoption of palliative therapy was initial treatment off a research protocol (P = 0.0001). Initial treatment off a research protocol was itself associated with older age (P = 0.0002), nonspontaneous onset of leukemia (P = 0.005), female sex (P = 0.003), and the absence of dependent children (P = 0.01) when examined by multivariate logistic regression. The palliative treatment interval was defined as the time between the discontinuation of aggressive treatment and the patient's death. Fifty-one percent, 119 of 235 patients, received palliative care; of these, 47% were palliated from the time of diagnosis and 53% were palliated only after receiving remission induction therapy. The median duration for the palliative care period was 46 days (50 days for the initially palliated group, 24 days for the group receiving aggressive therapy.(ABSTRACT TRUNCATED AT 250 WORDS)