BACKGROUND: Developments in information technology promise to revolutionise the delivery of health care by providing access to data in a timely and efficient way. Information technology also raises several important concerns about the confidentiality and privacy of health data. New and existing legislation in Europe and North America may make access to patient level data difficult with consequent impact on research and health surveillance. Although research is being conducted on technical solutions to protect the privacy of personal health information, there is very little research on ways to improve individuals power over their health information. This paper proposes a health care information directive, analogous to an advance directive, to facilitate choices regarding health information disclosure. RESULTS AND DISCUSSION: A health care information directive is described which creates a decision matrix that combines the ethical appropriateness of the use of personal health information with the sensitivity of the data. It creates a range of possibilities with in which individuals can choose to contribute health information with or without consent, or not to contribute information at all. CONCLUSION: The health care information directive may increase individuals understanding of the uses of health information and increase their willingness to contribute certain kinds of health information. Further refinement and evaluation of the directive is required. (+info)
Doctors' authoritarianism in end-of-life treatment decisions. A comparison between Russia, Sweden and Germany.
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OBJECTIVES: The study was performed in order to investigate how end-of-life decisions are influenced by cultural and sociopolitical circumstances and to explore the compliance of doctors with patient wishes. PARTICIPANTS AND MEASUREMENT: Five hundred and thirty-five physicians were surveyed in Sweden (Umea), Germany (Rostock and Neubrandenburg), and in Russia (Arkhangelsk) by a questionnaire. The participants were recruited according to availability and are not representative. The questionnaire is based on the one developed by Molloy and co-workers in Canada which contains three case vignettes about an 82-year-old Alzheimer patient with an acute life-threatening condition; the questionnaire includes different levels of information about his treatment wishes. We have added various questions about attitudes determining doctors' decision making process (legal and ethical concerns, patient's and family wishes, hospital costs, patient's age and level of dementia and physician's religion). RESULTS: Swedish physicians chose fewer life-prolonging interventions as compared with the Russian and the German doctors. Swedish physicians would perform cardiopulmonary resuscitation (CPR) in the event of a cardiac arrest less frequently, followed by the German doctors. More than half the Russian physicians decided to perform CPR irrespective of the available information about the patient's wishes. Level of dementia emerged as the most powerful determining attitude-variable for the decision making in all three countries. CONCLUSIONS: The lack of compliance with patient wishes among a substantial number of doctors points to the necessity of emphasising ethical aspects both in medical education and clinical practice. The inconsistency in the treatment decisions of doctors from different countries calls for social consensus in this matter. (+info)
Cardiopulmonary resuscitation performed in patients with terminal illness in Chiang Mai University Hospital, Thailand.
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BACKGROUND: The original target of cardiopulmonary resuscitation (CPR) was victims of acute cardiopulmonary arrest. However, the use of CPR has expanded to a wide variety of patients including those with terminal illness for whom CPR is futile. The objective of this study was to identify the incidence of CPR performed, the severity of illness and the outcome of CPR attempted in terminal illness in a teaching hospital. METHODS: Cardiopulmonary resuscitation attempted in terminal illness was retrospectively assessed from the medical records of hospital deaths with any one of eight life-threatening diagnoses during a 3.5-year period. RESULTS: Of 532 hospital deaths from terminal illness, 411 records (77.3%) were reviewed and abstracted. Most of the 411 patients had a low pre-CPR functional status. Generally, CPR was performed in 270 (65.7%) cases; 114 of those given CPR (42.2%) initially survived, but all died shortly after the manoeuvre. The high death rate following CPR may reflect both terminal illnesses and the severity of pre-event functional capacity of patients. CONCLUSION: The criteria for CPR in this group of patients need to be re-assessed and use of a Cerebral Performance Categories (CPC) score may be helpful. (+info)
Personality characteristics of physicians and end-of-life decisions in Russia.
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OBJECTIVE: To explore the relationships between personality characteristics, underlying attitudes, and treatment decisions for severely ill elderly patients in a sample of Russian doctors. DESIGN: Survey. SETTING: Group sessions during meetings or individual presentations of questionnaire. SUBJECTS: A convenience sample of 231 physicians from the Archangelsk region in northern Russia who frequently encounter treatment situations with incompetent elderly patients. MEASUREMENTS: Temperament and Character Inventory (Cloninger et al, 1994) for assessing personality dimensions. The questionnaire on decision-making is based on the original developed by Molloy and coworkers from McMaster University in Canada. In a case-vignette, the condition of an 82-year-old man with acute gastrointestinal bleeding is described comprehensively in combination with 3 different levels of information about the patient wishes (no information, DNR order, advance directive). Questions about importance of legal concerns, patient and family wishes, hospital costs, patient's age and level of dementia, and physician's religion for the doctor's decision-making are added. MAIN RESULTS: No significant relationship was found between chosen treatment options and personality traits in any of the 3 situations. However, personality characteristics such as self-directedness, cooperativeness, and self-transcendence, in particular, show significant relationships with attitudes underlying these decisions. CONCLUSIONS: Physicians should be trained to improve their cooperative abilities in the treatment of severely ill elderly patients to be better prepared for their decision-making and coping concerning end-of-life decisions and the use of do-not-resuscitate orders and advance directives. Ethical values in clinical practice, especially patient autonomy, should be addressed during the early stage of the medical curriculum. (+info)
Health care directives for the elderly.
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The treatment of incompetent older people presents physicians and family members with complex medical, ethical, moral, and legal problems. This article explores the use of advance health care directives in the decision-making process, the qualities of the "ideal" directive, practical and legal issues relating to directives, and the role of the family physician in their implementation. (+info)
Advance directives: patient preferences in family practice.
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The author reports on six months' experience of obtaining advance directives from patients for care in a family practice. Patients were questioned about their preferences for comfort or prolonging life and then were asked to delegate a substitute decision maker. Of 20 patients, all who responded chose comfort over prolonging life. Delegated substitute decision makers included spouses, children, and professionals or friends. In this population, patients overwhelmingly favoured comfort over prolonging life in the event that they might be irreversibly disabled, and they tended to choose spouses or other first-degree relatives as substitute decision makers. (+info)
Record health care directives before terminal illness!
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Physicians share the grief and tension of families who must make decisions for incompetent, dying members. The author recorded the wishes of 1000 competent patients to guide families and the health care team during terminal illness. A questionnaire, which became part of the medical record, was used to determine views of organ donation, religious beliefs, and other directives. Patients were eager to record and discuss their wishes during an office or hospital visit; 94% of all patients wanted to participate in health care decisions. When directives for terminal care are available, families will not be forced to make blind crisis decisions for a dying member. (+info)
Artificial feeding for severely disoriented, elderly patients.
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The issue of artificial feeding for patients with dementia who refuse feeding by hand is a wrenching emotional problem that can cloud clinical judgement. It is helpful to apply an analytic approach to decision making. There are five steps: gathering a comprehensive clinical database; defining the goal of treatment; knowing the treatment options available, their burdens and potential benefits; understanding the law; and defining the moral framework in which care is being given. Such an approach can be used to formulate a plan of treatment in the best interests of incompetent elderly patients who cannot speak for themselves. (+info)