Substitute decisions about genetic testing in critical care research: a glimpse behind the curtain.
Explore the source record for details and available documents.
Biomedical Research↗
Biomedical subjects
J V Lavery
Publications and source records attributed to J V Lavery.
Ethical issues in international environmental health research.
Environmental health problems are among the world's most significant health concerns. Although environmental risks are experienced disproportionately by people in developing countries, environmental health research (EHR) is conducted primarily in developed countries. Human subjects participate in five main types of EHR: (1) documentation and quantification of exposure to potentially hazardous substances; (2) elucidation of biological responses to these materials; (3) characterization and measurement of susceptibility to harmful effects of hazardous materials; (4) trials involving environmental interventions to reduce risk; and (5) documentation and measurement of various manifestations of disease putatively linked to environmental exposures. Although existing frameworks for the ethics of international clinical research are generally relevant to EHR, they currently lack the specificity necessary to confront three inherent problems in EHR, namely under-determination in EHR findings, the unavoidable nature of some environmental hazards, and environmental justice implications. We examine these issues as they relate to community partnership, risk assessment, and the assessment and management of economic and political interests in EHR. We believe that there are 3 general features of ethical EHR, it has health promoting value, the populations studied are not restricted in their ability to avoid environmental hazards by economic or political repression, and the justification for conducting EHR on populations with known exposure to environmental hazards gets stronger as the limits on populations to reduce the hazards or remove themselves from them becomes greater, as long as the first and second conditions are also met.
Bioethical Issues↗
Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: a qualitative study.
BACKGROUND: Euthanasia and assisted suicide, and policies to address them are the subjects of contentious debate in many countries. However, the question of why people desire euthanasia or assisted suicide has not been coherently answered. We aimed to answer this question in a specific group of patients. METHODS: We did a qualitative study of 32 people with HIV-1 or AIDS, who were enrolled in the HIV-1 Ontario Observational Database at Sunnybrook and Women's College Health Sciences Centre, Toronto, Ontario, Canada. We elicited participants' experiences of deliberation about euthanasia or assisted suicide, and the meaning of these experiences with in-depth, face-to-face interviews. We analysed our data with grounded theory methods. FINDINGS: Participants' desire for euthanasia and assisted suicide were affected by two main factors: disintegration, which resulted from symptoms and loss of function; and loss of community, which we defined as progressive diminishment of opportunities to initiate and maintain close personal relationships. These factors resulted in perceived loss of self. Euthanasia and assisted suicide were seen by participants as means of limiting loss of self. INTERPRETATION: These determinants of desire for euthanasia or assisted suicide in people with HIV-1 or AIDS have implications for the debate on these practices, and development of policies to regulate them.
Acquired Immunodeficiency Syndrome↗
Dying in Canada: is it an institutionalized, technologically supported experience?
Although preliminary evidence shows that people generally prefer to die at home, very little is known about where Canadians die. Understanding the epidemiology of dying in Canada may illuminate opportunities to improve quality of end-of-life care and related health policy. We conducted a cross-sectional analysis of death records in Canada to determine the proportions of deaths occurring in hospitals and special care units. Our analysis found that deaths in Canada occur in hospitals with provincial and territorial proportions ranging from 87% in Quebec to 52% in the Northwest Territories. In hospitals recording deaths in special care units, 18.64% of all deaths occurred in special care units. The proportion of deaths in special care units ranged from 25% in Manitoba to 7% in the Northwest Territories. The proportion of deaths in special care units varied by size and nature (teaching vs. non-teaching) of hospitals. It increased with the size of the hospital from 8% in hospitals with 1-49 beds, to 23% for hospitals with 400 or more beds. In teaching hospitals, 27% of deaths occurred in special care units, and in non-teaching hospitals the proportion was 15%. In conclusion, the majority of deaths in Canada occur in hospitals and a substantial proportion occur in special care units, raising questions about the appropriateness and quality of current end-of-life care practices in Canada.
Canada↗
Reconceptualizing advance care planning from the patient's perspective.
BACKGROUND: Traditional academic assumptions about advance care planning (ACP) include the following: (1) the purpose of ACP is preparing for incapacity; (2) ACP is based on the ethical principle of autonomy and the exercise of control; (3) the focus of ACP is completing written advance directive forms; and (4) ACP occurs within the context of the physician-patient relationship. These assumptions about ACP have never been empirically validated. OBJECTIVE: To examine the traditional academic assumptions by exploring ACP from the perspective of patients actively participating in the planning process. METHODS: Forty-eight patients (30 men and 18 women with a mean age of 48.3 years) who were undergoing hemodialysis were interviewed 6 months after receiving an advance directive form. Their experience of ACP was noted in interviews that were audiotaped, transcribed, and analyzed. RESULTS: The participants said that their purpose in ACP was to prepare for death and dying, and their underlying goals included the exercise of control and an attempt to relieve burdens placed on loved ones. Advance care planning was viewed as a social process, and completing a written advance directive form was often regarded as unnecessary. Participants often involved close loved ones, but physicians infrequently. CONCLUSIONS: The traditional academic assumptions are not fully supported from the perspective of patients involved in ACP. The patients we interviewed stated that (1) the purpose of ACP is not only preparing for incapacity but also preparing for death; (2) ACP is not based solely on autonomy and the exercise of control, but also on personal relationships and relieving burdens placed on others; (3) the focus of ACP is not only on completing written advance directive forms but also on the social process; and (4) ACP does not occur solely within the context of the physician-patient relationship but also within relationships with close loved ones.
Adult↗
The "Supremes" decide on assisted suicide: what should a doctor do?
Explore the source record for details and available documents.
Canada↗
Bioethics for clinicians: 11. Euthanasia and assisted suicide.
Euthanasia and assisted suicide involve taking deliberate action to end or assist in ending the life of another person on compassionate grounds. There is considerable disagreement about the acceptability of these acts and about whether they are ethically distinct from decisions to forgo life-sustaining treatment. Euthanasia and assisted suicide are punishable offences under Canadian criminal law, despite increasing public pressure for a more permissive policy. Some Canadian physicians would be willing to practise euthanasia and assisted suicide if these acts were legal. In practice, physicians must differentiate between respecting competent decisions to forgo treatment, providing appropriate palliative care, and acceeding to a request for euthanasia or assisted suicide. Physicians who believe that euthanasia and assisted suicide should be legally accepted in Canada should pursue their convictions only through legal and democratic means.
Attitude to Health↗
Hospital policies on life-sustaining treatments and advance directives in Canada.
OBJECTIVE: To determine the prevalence and content of hospital policies on life-sustaining treatments (cardiopulmonary resuscitation [CPR], mechanical ventilation, dialysis, artificial nutrition and hydration, and antibiotic therapy for life-threatening infections) and advance directives in Canada. DESIGN: Cross-sectional mailed survey. SETTING: Canada. PARTICIPANTS: Chief executive officers or their designates at public general hospitals. MAIN OUTCOME MEASURES: Information regarding the existence of policies on life-sustaining treatments or advance directives and the content of the policies. RESULTS: Questionnaires were completed for 697 (79.2%) of the 880 hospitals surveyed. Of the 697 respondents 362 (51.9%) sent 388 policies; 355 (50.9%) sent do-not-resuscitate (DNR) policies (i.e., policies that addressed CPR alone or in combination with other life-sustaining treatments). Of the 388 policies 327 (84.3%) addressed CPR alone, 28 (7.2%) addressed CPR plus other life-sustaining treatments, 10 (2.6%) addressed advance directives, and the remaining 23 (5.9%) addressed other life-sustaining treatments. Of the 355 DNR policies 1 (0.3%) stated that routine discussion with patients is required, 315 (88.7%) restricted their scope to terminally or hopelessly ill patients, 187 (52.7%) mentioned futility, 29 (8.2%) mentioned conflict resolution, 9 (2.5%) and 13 (3.7%) required explicit communication of the decision to the competent patient or family of the incompetent patient respectively, 110 (31.0%) authorized the family of an incompetent patient to rescind the DNR order, 224 (63.1%) authorized the nursing staff to do so, and 217 (61.1%) authorized physicians to do so. CONCLUSIONS: Although about half of the public general hospitals surveyed had DNR policies few had policies regarding other life-sustaining treatments or advance directives. Existing policies could be improved if hospitals encouraged routine advance discussions, removed the restriction to terminally or hopelessly ill patients, scrutinized the use of the futility standard, stipulated procedures for conflict resolution, explicitly required communication of the decision to competent patients or substitute decision-makers of incompetent patients and scrutinized the provision allowing families and health care professionals to rescind the wishes of now incompetent patients.
Attitude to Health↗