Evaluation and ethical review of a tool to explore patient preferences for information and involvement in decision making.
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AIM: To improve clinical and ethical understanding of patient preferences for information and involvement in decision making. OBJECTIVES: To develop and evaluate a clinical tool to elicit these preferences and to consider the ethical issues raised. DESIGN: A before and after study. SETTING: Three UK hospices. PARTICIPANTS: Patients with advanced life-threatening illnesses and their doctors. INTERVENTION: Questionnaire on information and decision-making preferences. MAIN OUTCOME MEASURES: Patient-based outcome measures were satisfaction with the amount of information given, with the way information was given, with family or carer information, and confidence about future decision making. Doctor-based outcome measures were confidence in matching information to patient preference, matching family or carer communication to patient preference, knowing patient preferences and matching future decision making with patient preference. RESULTS: Of 336 admissions, 101 patients (mean age 67.3 years, 47.5% men) completed the study (control, n = 40; intervention, n = 61). Patient satisfaction with the way information was given (chi2 = 6.38, df = 2, p = 0.041) and family communication (chi2 = 14.65, df = 2, p < 0.001) improved after introduction of the tool. Doctor confidence improved across all outcome measures (all p values < 0.001). CONCLUSIONS: Patient satisfaction and doctor confidence were improved by administering the questionnaire, but complex ethical issues were raised by implementing and applying this research. The balance of ethical considerations were changed by advanced life-threatening illness, because there is increased risk of harm through delivery of information discordant with the patient's own preferences. The importance of truly understanding patient preferences towards the end of life is highlighted by this study. (+info)
How do people with cancer wish to be cared for in primary care? Serial discussion groups of patients and carers.
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BACKGROUND: In most economically developed countries, patients, their informal and professional carers and policy makers are calling for more care in the community. OBJECTIVES: To involve patients with cancer, and their carers, in designing a framework for providing effective cancer care in primary care. METHODS: Two discussion groups comprising 18 people with current cancer and carers met monthly over a year in the south of Scotland. RESULTS: Patients with cancer and their carers identified five key times in the cancer journey as being especially significant from their perspective: around diagnosis, during treatment, after discharge, at recurrence and the final weeks. At each key time, there were five major issues of concern: information, communication, equity, a holistic approach and patient-centred care. Using these, the group members developed a checklist of recommended interventions for each stage in the illness trajectory and suggested how they might be implemented in primary care. Proactive and ongoing contact, if wished by the patient, was considered the central plank of cancer care in the community. CONCLUSIONS: Patients with cancer and their carers believe that there is an important and unique role for primary care in offering continuity of care and information that is patient-centred and holistic, throughout the cancer trajectory, from first presentation. This study successfully brought patient, carer and professional perspectives to the development of a care framework for primary care. (+info)
Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer.
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PURPOSE: The number of patients receiving chemotherapy near the end of life is increasing, as are concerns about goals of treatment, toxicity, and costs. We sought to determine the available sources of knowledge, the choices, and concerns of actual patients, and how patients balanced competing issues. METHODS: We used a literature search from 1980 to present. RESULTS: Available patient sources provide little information about prognosis, choices, alternatives, consequences, or how to choose. Many patients would choose chemotherapy for a small benefit in health outcomes, and for a smaller benefit than perceived by their health care providers for their own treatment. Adverse effects are less a concern for patients than for their well health care providers. There are no decision aids to assist patients with metastatic disease in making their choices, such as there are for adjuvant breast therapy. CONCLUSION: The perspective of the patient is different from that of a well person. Patients are willing to undergo treatments that have small benefits with major toxicity. Receiving realistic information about the different options of care and the likelihood of successful treatment or adverse effects is difficult. These factors may explain some of the increased use of chemotherapy near the end of life. Decision aids and honest, unbiased sources to inform patients of their prognosis, choices, consequences, typical outcomes, and ways to make decisions are needed. More prospective information about how patients make their choices, and what they would consider a good choice, would assist informed decision making. (+info)
Respiratory effects of amyotrophic lateral sclerosis: problems and solutions.
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Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease. Most patients die from respiratory complications. Fortunately, there are a growing number of treatment options that can improve both survival and quality of life for patients with ALS. This review discusses the respiratory evaluation and treatment of patients with ALS, about which a great deal is known. It also includes material on related problems, such as speech and swallowing difficulties and end-of-life care. (+info)
Variations in hospice use among cancer patients.
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BACKGROUND: Previous studies have documented that hospice enrollment by terminally ill cancer patients varies substantially by patient characteristics and across broad geographic regions, but little is known about how local practice patterns and individual physicians contribute to these variations. We examined hospice use within a regional integrated health care delivery system that provides consistent insurance coverage and hospice availability for its members to evaluate the relative importance of patient characteristics, physician characteristics, individual physicians, and local health centers in explaining variations in hospice enrollment. METHODS: We examined data for 3805 Kaiser Permanente of Northern California health plan enrollees who were diagnosed with and died of lung, colorectal, breast, or prostate cancer from January 1, 1996, through June 30, 2001. We used a random-effects linear probability hierarchical model to estimate adjusted hospice enrollment rates and identify factors associated with hospice enrollment. All P values are two-sided. RESULTS: Overall, 65.4% of patients enrolled in hospice care before death. In adjusted analyses, hospice enrollment did not vary by patients' race/ethnicity or marital status (all P>.2) but varied substantially among the 11 health centers where patients were treated (standard deviation [SD] of random effect = 10.0 percentage points, corresponding to an estimated adjusted hospice enrollment rate for two-thirds of centers (2 SDs) ranging from 55% to 75%, P = .02). Hospice enrollment varied less among the 675 individual physicians (SD = 4.6 percentage points; P = .09). CONCLUSIONS: Health care within a large integrated delivery system has the potential to eliminate racial and ethnic disparities in hospice use, but substantial variation in hospice use persists among local health centers. Focused efforts to understand how patients, physicians, and hospices interact at the local level are important to ensure equal access to hospice care for all terminally ill cancer patients. (+info)
How is place of death from cancer changing and what affects it? Analysis of cancer registration and service data.
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We aimed to compare trends in place of cancer death with the growth of palliative care and nursing home services, and investigate demographic, disease-related and area influences on individual place of death, using registration data for 216404 patients with breast, lung, colorectal and prostate cancer and aggregate data on services in South East England. Between 1985 and 1994 there was a trend away from hospital death (67-44%), to home (17-30%) and hospice death (8-20%). After 1995, this partly reversed. By 2002, hospital death rose to 47%, home death dropped to 23%, hospice death remained stable and nursing home death rose from 3 to 8%. Numbers of palliative care services increased, but trends for hospice and nursing home deaths most clearly followed the beds available. Cancer diagnosis and treatment influenced individual place of death, but between 1998 and 2002, age and area of residence were associated with most variation. Older patients and those living in more deprived areas died more often in hospitals and less often at home. Despite more palliative care services the proportion of people dying at home has not increased. Variation by age, deprivation and area of residence is unlikely to reflect patient preference. More active surveillance and planning must support policies for choice in end of life care. (+info)
Patterns and predictors of home health and hospice use by older adults with cancer.
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OBJECTIVES: To describe patterns of home health and hospice use by older cancer patients and a comparison group of older persons without cancer. To identify predictors of home care and hospice utilization. DESIGN: Retrospective analysis using the Surveillance, Epidemiology and End Results (SEER)-Medicare Database, a linkage of the SEER Program of the National Cancer Institute (an epidemiological surveillance system of population-based tumor registries) and Medicare Claims. SETTING: The SEER data used in this paper cover a service area that includes approximately 14% of the U.S. population, including the states of Connecticut, Hawaii, Iowa, and New Mexico and the metropolitan areas of Detroit, San Francisco-Oakland, Atlanta, Seattle-Puget Sound, Los Angeles County, and San Jose-Monterey. PARTICIPANTS: Five analytical samples were drawn. The first consisted of all cases with a diagnosis of cancer in 1997 to 1999 who were eligible for services in calendar year 1999 (n=120,072). The second and third were subsamples of these and consisted of cases with a new cancer diagnosis in 1999 (n=46,373) and cases who died in 1999 (n=41,483). The fourth consisted of a comparison sample without cancer (n=160,707). The fifth was a subsample of this and consisted of those who died in 1999 (n=6,639). MEASUREMENTS: Utilization rates of home health and hospice services. RESULTS: Twenty-nine percent of cancer patients used home health services, and 10.7% used hospice services, compared with 7.8% of noncancer patients who used home health and less than 1% who used hospice. Half (51.4%) of cancer patients who used home health did not have cancer listed as an admitting diagnosis for the use of those services. Home health utilization was lowest for unmarried men. CONCLUSION: This is the first study to evaluate community-based home health and hospice utilization by older cancer patients. Future studies must begin to address what constitutes appropriate utilization. (+info)
Patients' decision-making process regarding participation in phase I oncology research.
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PURPOSE: This study assesses the decision-making process of patients enrolling in phase I oncology studies. PATIENTS AND METHODS: Participants were eligible if they had consented to participate in a phase I cancer study at one of five cancer centers, understood English, and were older than 18 years. Trained interviewers conducted structured in-person interviews. RESULTS: Of the 163 participants, 88% were white, 96% had health insurance, and 51% were college graduates or post graduates. Overall, 81% were aware of hospice, but only 6% had seriously considered hospice for themselves; 84% were aware of palliative care and 10% seriously considered it for themselves; and 7% considered getting no treatment at all. Overall, 75% reported moderate or a lot of pressure to participate in the phase I study because their cancer was growing, whereas 7% reported such pressure from the study investigators and 9% felt such pressure from their families. For 63% of patients, the most important information for decision making was that the phase I drug killed cancer cells; only 12% reported that the adverse effects of the drug(s) was the most useful information. More than 90% of patients said they would still participate in the study even if the experimental drug caused serious adverse effects, including a 10% chance of dying. CONCLUSION: Patients are aware of many alternatives to phase I studies, but do not seriously consider them. Very few experience pressure from family or researchers to participate in research. Their main goal is to fight their cancer, and almost no adverse effect, including death, would dissuade them from enrolling. (+info)