Shared medical decision making.
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Biomedical subjects
Publications and source records attributed to Maria J Silveira.
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Must health care professionals provide treatments or interventions that they consider futile? Although much of the past and current debate about futility has centered on how to best define futility, it is the application of the concept in clinical decision making that is of central concern. Most physicians feel confident that they know futile treatment when they see it, but despite years of debate in scholarly journals, professional meetings, and popular media, consensus on a precise definition eludes us still. This article reviews numerous definitions of futility to illustrate the general lack of consensus over this concept. It also provides a flexible definition of futility that is patient centered and reliant on goals of care as the morally preferable definition. In short, the concept of futility as a means to resolve disputes over treatment decisions may, itself, be futile.
OBJECTIVES: To explore the predictors of symptom burden at the end of life. DESIGN: Observational, secondary analysis of Health and Retirement Study (HRS) data. SETTING: USA. PARTICIPANTS: Two thousand six hundred four deceased, older adults. METHODS: Multivariate Poisson and logistic regression to explore the relationship between sociodemographic and clinical factors with symptoms. RESULTS: Fatigue, pain, dyspnea, depression, and anorexia were common and severe; 58% of participants experienced more than 3 of these during their last year of life. Sociodemographic and clinical factors were associated with the number of symptoms as well as the presence of pain, depression, and dyspnea alone. Decedents in the highest quartile of net worth had fewer symptoms (incident rate ratio [IRR] 0.90, confidence interval [CI] 0.85-0.96) and less pain (odds ratio [OR] 0.66, CI 0.51-0.85) than comparisons did. Patients with cancer experienced more pain (OR 2.02, CI 1.62-2.53) and depression (OR 1.31, CI 1.07-1.61). Patients experienced more depression (OR 2.37, CI 1.85-3.03) and dyspnea (OR 1.40, CI 1.09-1.78). LIMITATION: Use of proxy reports for primary data. CONCLUSION: Older Americans experience a large symptom burden in the last year of life, largely with treatable symptoms such as pain, dyspnea, and depression. The adequacy of symptom control relates to clinical factors as well as net worth. This association between symptoms and wealth suggests that access to health care and other social services beyond those covered by Medicare may be important in decreasing symptom burden at the end of life.
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OBJECTIVES: To assess whether physicians know of Washington State's prehospital do-not-resuscitate (DNR) policy, 6 years after its implementation. DESIGN: Cross-sectional survey. SETTING: Washington State, April 2001. PARTICIPANTS: Four hundred seventy-one practicing physicians. MEASUREMENTS: Multivariate logistic regression was used to determine relationships between physician and practice characteristics with knowledge of policies governing advance care planning. RESULTS: Among respondents, 60% did not know that Washington State requires an emergency medical service (EMS)-specific DNR order authored by a physician. Seventy-nine percent did not know that patient-authored advance directives apply only in hospitals and medical offices. CONCLUSION: The findings in this study suggest that most physicians in Washington State lack knowledge about the documentation needed for EMS personnel to forgo pre-hospital attempts at cardiopulmonary resuscitation. Further study is needed to determine whether physician education or legislative change is necessary.
OBJECTIVE: To study the health care experiences and palliative care needs of patients with ALS in their final month of life. METHODS: Caregivers of decedent patients with ALS completed a single survey focused on the final month of life. They reported the patients' physical and emotional symptoms, preferences for end-of-life care, completion of advance directives, and preparation for death. The caregiver reported which life-sustaining treatments were administered, withheld, or withdrawn; whether the patient was enrolled in hospice; and their own satisfaction with the patient's medical care. RESULTS: Fifty caregivers completed the survey. Caregivers reported that the most common symptoms in the last month of life included difficulty communicating (62%), dyspnea (56%), insomnia (42%), and discomfort other than pain (48%). Pain was both frequent and severe. One-third of caregivers were dissatisfied with some aspect of symptom management. Caregivers reported an advance directive was completed by 88% of patients and the patients' goals of care were honored by 88% of health care practitioners. Two-thirds of patients were enrolled in hospice. Compared to nonhospice patients, hospice patients were significantly more likely to: 1) die in their preferred location; 2) die outside the hospital; and 3) receive morphine. Most caregivers reported that their loved one was at peace, and prepared for and was accepting of death. CONCLUSIONS: Caregivers report that many patients with ALS still experience distressing physical symptoms in the last month of life, despite enrollment in hospice. Most patients with ALS, however, anticipate and plan for their deaths and have their wishes respected.
To understand the factors associated with interest in assisted suicide among terminally ill patients, we surveyed 50 caregivers of decedent amyotrophic lateral sclerosis (ALS) patients from Oregon and Washington regarding perceptions of patients' interest in assisted suicide and their physical and emotional state in the last month of life. For 38 caregivers, we had baseline information from the patients themselves, gathered a median of 11 months before death, regarding depression, hopelessness, sense of burden, social support, quality of life, pain, and suffering. According to our respondents, one-third of ALS patients discussed wanting assisted suicide in the last month of life. Hopelessness and interest in assisted suicide at baseline predicted desire for assisted suicide later on. ALS patients who were interested in assisted suicide, compared to those who were not, had greater distress at being a burden to others and more insomnia, pain, and discomfort other than pain.
OBJECTIVE: Little is known about factors that influence whether children with chronic conditions die at home. We sought to test whether deaths attributable to underlying complex chronic conditions (CCCs) were increasingly occurring at home and to determine what features were associated with home deaths. DESIGN: A retrospective case series was conducted of all deaths that occurred to children age 0 to 18 years in Washington state from 1980 to 1998 using death certificate data, augmented with 1990 US Census data regarding median household income by zip code in 1989, to determine the site of death. RESULTS: Of the 31 455 deaths identified in infants, children, and adults younger than 25 years, 52% occurred in the hospital, 17.2% occurred at home, 8.5% occurred in the emergency department or during transportation, 0.4% occurred in nursing homes, and 21.7% occurred at other sites. Among children who died as a result of some form of CCC (excluding injury, sudden infant death syndrome, and non-CCC medical conditions), the percentage of cases younger than 1 year who died at home rose slightly from 7.8% in 1980 to 11.6% in 1998, whereas the percentage of older children and young adults who had a CCC and died at home rose substantially from 21% in 1980 to 43% in 1998. Children who had lived in more affluent neighborhoods were more likely to have died at home. Using leukemia-related deaths as a benchmark, deaths as a result of congenital, genetic, neuromuscular, and metabolic conditions and other forms of cancer all were more likely to have occurred at home. Significant variation in the likelihood of home death, not explained by the individual attributes of the cases, also existed across the 39 counties in Washington state. CONCLUSIONS: Children who die with underlying CCCs increasingly do so at home. Age at death, specific condition, local area affluence, and the location of home all influence the likelihood of home death. These findings warrant additional study, as they have implications for how we envision pediatric palliative care, hospice, and other supportive services for the future.
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