Decision aids for advance care planning: an overview of the state of the science.
Humans; Terminally Ill; Prognosis; Internet; advance care planning; Decision Support Techniques
Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record, and physicians are accurate only about 65% of the time when predicting patient preferences for intensive care. Decision aids can support the advance care planning process by providing a structured approach to informing patients about care options and prompting them to document and communicate their preferences. This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. Using interviews of key informants and a search of the gray and published literature from January 1990 to May 2014, the authors found that many decision aids are widely available but are not assessed in the empirical literature. The 16 published studies testing decision aids as interventions for adult advance care planning found that most are proprietary or not publicly available. Some are constructed for the general population, whereas others address disease-specific conditions that have more predictable end-of-life scenarios and, therefore, more discrete choices. New decision aids should be designed that are responsive to diverse philosophical perspectives and flexible enough to change as patients gain experience with their personal illness courses. Future efforts should include further research, training of advance care planning facilitators, dissemination and access, and tapping potential opportunities in social media or other technologies.
2014-09
Butler M; Ratner E; McCreedy E; Shippee N; Kane RL
Annals Of Internal Medicine
2014
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Journal Article
<a href="http://doi.org/10.7326/M14-0644" target="_blank" rel="noreferrer">10.7326/M14-0644</a>
Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: a clinical practice guideline from the American College of Physicians
Humans; Caregivers/psychology; referral and consultation; Palliative Care/standards; social support; Intervention; Interventions; Continuity of Patient Care/standards; Pain/therapy; Patient Care Team/standards; Advance Care Planning/standards; Depression/therapy; Dyspnea/therapy
RECOMMENDATION 1: In patients with serious illness at the end of life, clinicians should regularly assess patients for pain, dyspnea, and depression. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 2: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage pain. For patients with cancer, this includes nonsteroidal anti-inflammatory drugs, opioids, and bisphosphonates. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 3: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage dyspnea, which include opioids in patients with unrelieved dyspnea and oxygen for short-term relief of hypoxemia. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 4: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage depression. For patients with cancer, this includes tricyclic antidepressants, selective serotonin reuptake inhibitors, or psychosocial intervention. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 5: Clinicians should ensure that advance care planning, including completion of advance directives, occurs for all patients with serious illness. (Grade: strong recommendation, low quality of evidence.).
2008
Qaseem A; Snow V; Shekelle PG; Casey DE; Cross JT; Owens DK; Assessment Subcommittee of the American College of Physicians Clinical Efficacy; Dallas P; Dolan NC; Forciea MA; Halasyamani L; Hopkins RH; Shekelle PG
Annals Of Internal Medicine
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.7326/0003-4819-148-2-200801150-00009" target="_blank" rel="noreferrer">10.7326/0003-4819-148-2-200801150-00009</a>
Evidence for improving palliative care at the end of life: a systematic review
Humans; Caregivers/psychology; referral and consultation; Palliative Care/standards; social support; RDF Project; Continuity of Patient Care/standards; Pain/therapy; Patient Care Team/standards; Advance Care Planning/standards; Depression/therapy; Dyspnea/therapy
BACKGROUND: Many persons and their families are burdened by serious chronic illness in late life. How to best support quality of life is an important consideration for care. PURPOSE: To assess evidence about interventions to improve palliative and end-of-life care. DATA SOURCES: English-language citations (January 1990 to November 2005) from MEDLINE, the Database of Abstracts of Reviews of Effects, the National Consensus Project for Quality Palliative Care bibliography, and November 2005 to January 2007 updates from expert reviews and literature surveillance. STUDY SELECTION: Systematic reviews that addressed "end of life," including terminal illness (for example, advanced cancer) and chronic, eventually fatal illness with ambiguous prognosis (for example, advanced dementia), and intervention studies (randomized and nonrandomized designs) that addressed pain, dyspnea, depression, advance care planning, continuity, and caregiving. DATA EXTRACTION: Single reviewers screened 24,423 titles to find 6381 relevant abstracts and reviewed 1274 articles in detail to identify 33 high-quality systematic reviews and 89 relevant intervention studies. They synthesized the evidence by using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) classification. DATA SYNTHESIS: Strong evidence supports treating cancer pain with opioids, nonsteroidals, radionuclides, and radiotherapy; dyspnea from chronic lung disease with short-term opioids; and cancer-associated depression with psychotherapy, tricyclics, and selective serotonin reuptake inhibitors. Strong evidence supports multi component interventions to improve continuity in heart failure. Moderate evidence supports advance care planning led by skilled facilitators who engage key decision makers and interventions to alleviate caregiver burden. Weak evidence addresses cancer-related dyspnea management, and no evidence addresses noncancer pain, symptomatic dyspnea management in advanced heart failure, or short-acting antidepressants in terminal illness. No direct evidence addresses improving continuity for patients with dementia. Evidence was weak for improving caregiver burdens in cancer and was absent for heart failure. LIMITATIONS: Variable literature indexing for advanced chronic illness and end of life limited the comprehensiveness of searches, and heterogeneity was too great to do meta-analysis. CONCLUSION: Strong to moderate evidence supports interventions to improve important aspects of end-of-life care. Future research should quantify these effects and address the generalizability of insights across the conditions and settings of the last part of life. Many critical issues lack high-quality evidence.
2008
Lorenz KA; Lynn J; Dy SM; Shugarman LR; Wilkinson A; Mularski RA; Morton SC; Hughes RG; Hilton LK; Maglione M; Rhodes SL; Rolon C; Sun VC; Shekelle PG
Annals Of Internal Medicine
2008
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-148-2-200801150-00010" target="_blank" rel="noreferrer">10.7326/0003-4819-148-2-200801150-00010</a>
Can't we improve on advance directives?.
Humans; Family; Medical Records; decision making; DNAR; documentation; Advance Directives; Advance Care Planning/st [Standards]; Palliative Care/st [Standards]; Patients/px [Psychology]
2008
Brasic GM; Hammes BJ
Annals Of Internal Medicine
2008
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-148-5-200803040-00020" target="_blank" rel="noreferrer">10.7326/0003-4819-148-5-200803040-00020</a>
Lost in transition: challenges and opportunities for improving the quality of transitional care
2004
Coleman E; Berenson R
Annals Of Internal Medicine
2004
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-141-7-200410050-00009" target="_blank" rel="noreferrer">10.7326/0003-4819-141-7-200410050-00009</a>
The n-of-1 randomized controlled trial: clinical usefulness. Our three-year experience
Female; Humans; Adult; Physician's Role; Research Design; Double-Blind Method; Patient Compliance; Clodronate; Randomized Controlled Trials/methods; Amitriptyline/therapeutic use; Propranolol/therapeutic use; Syncope/drug therapy
OBJECTIVE: To review the feasibility and effectiveness of n-of-1 randomized controlled trials (n-of-1 trials) in clinical practice. DESIGN: Individual trials were double-blind, randomized, multiple crossover trials. The impact of n-of-1 trials was determined by eliciting physicians' plans of management and confidence in those plans before and after each trial. SETTING: Referral service doing n-of-1 trials at the requests of community and academic physicians. OBJECT of ANALYSIS: All trials were planned, started, and completed by the n-of-1 service. MEASURES of OUTCOME: The proportion of planned n-of-1 trials that were completed and the proportion that provided a definite clinical or statistical answer. A definite clinical answer was achieved if an n-of-1 trial resulted in a high level of physician's confidence in the management plan. Specific criteria were developed for classifying an n-of-1 trial as providing a definite statistical answer. MAIN RESULTS: Seventy-three n-of-1 trials were planned in various clinical situations. Of 70 n-of-1 trials begun, 57 were completed. The reasons for not completing n-of-1 trials were patients' or physicians' noncompliance or patients' concurrent illness. Of 57 n-of-1 trials completed, 50 provided a definite clinical or statistical answer. In 15 trials (39% of trials in which appropriate data were available), the results prompted physicians to change their "prior to the trial" plan of management (in 11 trials, the physicians stopped the drug therapy that they had planned to continue indefinitely). CONCLUSION: We interpret the results as supporting the feasibility and usefulness of n-of-1 trials in clinical practice.
1990
Guyatt GH; Keller JL; Jaeschke R; Rosenbloom D; Adachi JD; Newhouse MT
Annals Of Internal Medicine
1990
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-112-4-293" target="_blank" rel="noreferrer">10.7326/0003-4819-112-4-293</a>
Measured enthusiasm: does the method of reporting trial results alter perceptions of therapeutic effectiveness?
Humans; Male; Adult; Attitude of Health Personnel; Questionnaires; Middle Aged; Treatment Outcome; Ontario; Outcome Assessment (Health Care); Hospitals; Risk; Teaching; Non-U.S. Gov't; Research Support; Statistical; Data Interpretation; Clinical Trials; Gemfibrozil/therapeutic use; Hyperlipidemia/complications/drug therapy/mortality; Myocardial Infarction/etiology/mortality/prevention & control
OBJECTIVE: To compare clinicians' ratings of therapeutic effectiveness when different trial end points were presented as percent reductions in relative compared with absolute risk and as numbers of patients treated to avoid one adverse outcome. DESIGN: Survey, with random allocation of two questionnaires. SETTING: Toronto teaching hospitals. RESPONDENTS: Convenience sample of 100 faculty and housestaff in internal medicine and family medicine. INTERVENTION: One questionnaire presented results for three end points of the Helsinki Heart Study as separate drug trials using only absolute differences in events; the other showed the same end points as relative differences. Both questionnaires included a fourth "trial," showing person-years of treatment needed to prevent one myocardial infarction. MAIN OUTCOME MEASURE: The "trials" were each rated on an 11-point scale, from treatment "harmful" to "very effective." RESULTS: Respondents' ratings of effectiveness varied with the end point. Controlling for end point, ratings of effectiveness by the 50 participants receiving absolute event data were lower than those by 50 participants responding to relative risk reductions (P < 0.001); however, no end-point difference was more than 0.6 scale points. For a "trial" reporting that 77 persons were treated for 5 years to prevent one myocardial infarction, mean ratings were 2.3 or 1.8 scale points lower, respectively (both P < 0.001), than when the same data were shown as relative or absolute risk reductions. CONCLUSIONS: Clinicians' views of drug therapies are affected by the common use of relative risk reductions in both trial reports and advertisements, by end-point emphasis, and, above all, by underuse of summary measures that relate treatment burden to therapeutic yields in a clinically relevant manner.
1992
Naylor CD; Chen E; Strauss B
Annals Of Internal Medicine
1992
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-117-11-916" target="_blank" rel="noreferrer">10.7326/0003-4819-117-11-916</a>
Clinical incoherence about persons: the problem of the persistent vegetative state
Humans; Attitude of Health Personnel; Social Values; Attitude to Death; Tissue and Organ Procurement; Uncertainty; Professional Patient Relationship; Death and Euthanasia; decision making; Physicians/psychology; Persistent Vegetative State
1996
Cassell EJ
Annals Of Internal Medicine
1996
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-125-2-199607150-00014" target="_blank" rel="noreferrer">10.7326/0003-4819-125-2-199607150-00014</a>
Why should doctors read medical books?
Humans; Physicians; medicine; Textbooks
1997
Cassell EJ
Annals Of Internal Medicine
1997
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-127-7-199710010-00024" target="_blank" rel="noreferrer">10.7326/0003-4819-127-7-199710010-00024</a>
Building measurement and data collection into medical practice
Humans; Data Collection; Physician's Role; Clinical Protocols; Outcome and Process Assessment (Health Care); patient care team; RDF Project; Diabetes Mellitus; Cost Control; Practice Management; Medical/standards; Blood Glucose Self-Monitoring; Type 2/therapy; Urinary Tract Infections/therapy
Clinicians can use data to improve daily clinical practice. This paper offers eight principles for using data to support improvement in busy clinical settings: 1) seek usefulness, not perfection, in the measurement; 2) use a balanced set of process, outcome, and cost measures; 3) keep measurement simple (think big, but start small); 4) use qualitative and quantitative data; 5) write down the operational definitions of measures; 6) measure small, representative samples; 7) build measurement into daily work; and 8) develop a measurement team. The following approaches to using data for improvement are recommended. First, begin with curiosity about outcomes or a need to improve results. Second, try to avoid knee-jerk, obstructive criticism of proposed measurements. Instead, propose solutions that are practical, goal-oriented, and good enough to start with. Third, gather baseline data on a small sample and check the findings. Fourth, try to change and improve the delivery process while gathering data. Fifth, plot results over time and analyze them by using a control chart or other graphical method. Sixth, refine your understanding of variation in processes and outcomes by dividing patients into clinically homogeneous subgroups (stratification) and analyzing the results separately for each subgroup. Finally, make further changes while measuring key outcomes over time. Measurement and improvement are intertwined; it is impossible to make improvements without measurement. Measuring and learning from each patient and using the information gleaned to test improvements can become part of daily medical practice in local settings.
1998
Nelson EC; Splaine ME; Batalden PB; Plume SK
Annals Of Internal Medicine
1998
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-128-6-199803150-00007" target="_blank" rel="noreferrer">10.7326/0003-4819-128-6-199803150-00007</a>
Diagnosing suffering: a perspective
Humans; Physician-Patient Relations; Clinical Competence; Professional Patient Relationship; Death and Euthanasia; Terminally Ill/psychology; Psychological; Stress; Pain/diagnosis/therapy
The alleviation of suffering is crucial in all of medicine, especially in the care of the dying. Suffering cannot be treated unless it is recognized and diagnosed. Suffering involves some symptom or process that threatens the patient because of fear, the meaning of the symptom, and concerns about the future. The meanings and the fear are personal and individual, so that even if two patients have the same symptoms, their suffering would be different. The complex techniques and methods that physicians usually use to make a diagnosis, however, are aimed at the body rather than the person. The diagnosis of suffering is therefore often missed, even in severe illness and even when it stares physicians in the face. A high index of suspicion must be maintained in the presence of serious disease, and patients must be directly questioned. Concerns over the discomfort of listening to patients' severe distress are usually more than offset by the gratification that follows the intervention. Often, questioning and attentive listening, which take little time, are in themselves ameliorative. The information on which the assessment of suffering is based is subjective; this may pose difficulties for physicians, who tend to value objective findings more highly and see a conflict between the two kinds of information. Recent advances in understanding how physicians increase the utility of information and make inferences allow one to reliably use the subjective information on which the diagnosis and treatment of suffering depend. Knowing patients as individual persons well enough to understand the origin of their suffering and ultimately its best treatment requires methods of empathic attentiveness and nondiscursive thinking that can be learned and taught. The relief of suffering depends on physicians acquiring these skills.
1999
Cassell EJ
Annals Of Internal Medicine
1999
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-131-7-199910050-00009" target="_blank" rel="noreferrer">10.7326/0003-4819-131-7-199910050-00009</a>
In search of a good death: Observations of patients, families, and providers
2000
Steinhauser KE; Clipp EC; McNeilly M; Christakis NA; McIntyre LM; Tulsky JA
Annals Of Internal Medicine
2000
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-132-10-200005160-00011" target="_blank" rel="noreferrer">10.7326/0003-4819-132-10-200005160-00011</a>
Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids.
Humans; Male; United States; Consensus; Treatment Refusal; Aged; Intention; Fluid Therapy; Morals; Food; Suicide; Non-U.S. Gov't; Professional Patient Relationship; Research Support; patient care team; Death and Euthanasia; Psychological; Stress; Ethics; Assisted; Hypnotics and Sedatives/administration & dosage; Double Effect; Palliative Care/legislation & jurisprudence/methods
When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death want reassurance that they can escape if their suffering becomes intolerable. In addition, a small percentage of terminally ill patients receiving comprehensive care reach a point at which their suffering becomes severe and unacceptable despite unrestrained palliative efforts; some of these patients request that death be hastened. This paper presents terminal sedation and voluntary refusal of hydration and nutrition as potential last resorts that can be used to address the needs of such patients. These two practices allow clinicians to address a much wider range of intractable end-of-life suffering than physician-assisted suicide (even if it were legal) and can also provide alternatives for patients, families, and clinicians who are morally opposed to physician-assisted suicide. This paper will define the two practices, distinguish them from more standard palliative care interventions and from physician-assisted suicide, illustrate them with a real clinical scenario, provide potential guidelines and practicalities, and explore their moral and legal status. Although medicine cannot sanitize dying or provide perfect answers for all challenging end-of-life clinical problems, terminal sedation and voluntary refusal of hydration and nutrition substantially increase patients' choices at this inherently challenging time.
2000
Quill TE; Byock IR; Panel ACP-ASIMEnd-of-Life Care Consensus
Annals Of Internal Medicine
2000
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-132-5-200003070-00012" target="_blank" rel="noreferrer">10.7326/0003-4819-132-5-200003070-00012</a>
Cachexia
Humans; Energy Metabolism; Body Composition; Cytokines/physiology; Acute-Phase Reaction/metabolism; Cachexia/etiology/metabolism/physiopathology/therapy; Nutrition Disorders/diagnosis; Starvation/physiopathology
Cachexia represents the clinical consequence of a chronic, systemic inflammatory response, and its manifestations differ considerably from those of starvation. Although cachexia is classically associated with chronic infections and malignant conditions, some of its elements have been identified in a wide variety of chronic diseases and in aging persons. Cachexia has repeatedly been associated with adverse clinical outcomes. The changes seen in cachexia are multidimensional and highly coordinated. Most obvious is a redistribution of the body's protein content, with preferential depletion of skeletal muscle and an increase in the synthesis of proteins involved in the response to tissue injury-the so-called acute-phase response. The physiologic, metabolic, and behavioral changes of cachexia are tightly regulated by cytokines, which signal the synthesis of acute-phase proteins as well as changes in intermediary metabolism that provide substrate and energy. The metabolic adaptations, notably the increase in the rate of protein degradation, limit the ability of hypercaloric feeding to reverse the depletion of lean mass. Recent studies have demonstrated the ability of anabolic and anticatabolic agents to mitigate the loss of skeletal muscle and to improve clinical outcomes in selected circumstances. Preclinical initiatives target the cytokine regulation of protein metabolism. It should be stressed that metabolic manipulation in cachexia could have positive or negative clinical effects, which must be distinguished through appropriate clinical trials.
2000
Kotler DP
Annals Of Internal Medicine
2000
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-133-8-200010170-00015" target="_blank" rel="noreferrer">10.7326/0003-4819-133-8-200010170-00015</a>
Narrative medicine: Form, function, and ethics
medicine; narrative
2001
Charon R
Annals Of Internal Medicine
2001
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-134-1-200101020-00024" target="_blank" rel="noreferrer">10.7326/0003-4819-134-1-200101020-00024</a>
Effects of offering advance directives on medical treatments and costs
Humans; Personal Autonomy; Withholding Treatment; Prospective Studies; California; Hospitals; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; DNAR Outcomes; Resource Allocation; Health Care and Public Health; Veterans; University; Advance Directives/ec [Economics]; Advance Directives/psychology; California Durable Power of Attorney for Health Care; Control Groups; Cost Control/methods; Life Support Care/utilization; Life Support Care/economics; Patient Satisfaction/statistics & numerical data; Risk Assessment
Objective: To examine the effects of advance directives on medical treatments and on patient satisfaction and well-being and to determine whether the enhancement of patient autonomy through advance directives provides a more ethically feasible approach to cost control than does the imposition of limits through rationing.; Design: Randomized, controlled trial.; Setting: University and Veterans Affairs medical center.; Patients: Two hundred and four patients with life-threatening illnesses, 100 of whom died after enrollment in the study.; Intervention: Patients randomly assigned to the experimental group were offered the California Durable Power of Attorney (a typical proxy-instruction directive), and patients assigned to the control group were not offered the advance directive. Hospital admissions were monitored to assure that a summary of the document was present in the active medical record at each hospitalization.; Measurements: Cognitive function, patient satisfaction, psychological well-being, health locus of control, sense of coherence, health-related quality of life, receipt of medical treatments, and medical treatment charges.; Results: No significant differences were found between advance-directive and control groups regarding psychosocial variables, health outcome variables, and medical treatments or charges. Patients offered an advance directive had an average hospital stay of 40.8 days (95% CI, 32.2 to 49.4 days), compared with an average of 33.1 days (95% CI, 26.0 to 40.2 days) for controls. Patients offered an advance directive were charged an average of $19,502 (95% CI, $13,030 to $25,974) for medical treatments in the last month of life compared with $19,700 (95% CI, $13,704 to $25,696) for controls.; Conclusions: Despite claims that public demand for longer life accounts for rising medical costs, most surveys suggest that patients are calling for less, not more, of the expensive, high-technology treatment often used in terminal phases of illness. Executing the California Durable Power of Attorney for Health Care and having a summary copy placed in the patient's medical record had no significant positive or negative effect on a patient's well-being, health status, medical treatments, or medical treatment charges.;
1992-10
Schneiderman LJ; Kronick R; Kaplan RM; Anderson JP; Langer RD
Annals Of Internal Medicine
1992
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Journal Article