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Biomedical subjects

Linda Ganzini

Publications and source records attributed to Linda Ganzini.

At least 19 recordsLinked to original sources

Views on physician-assisted suicide among family members of Oregon cancer patients.

Ninety-eight Oregonians with advanced cancer and their family members participated in a cross-sectional survey to understand agreement in views on physician-assisted suicide (PAS), which was a legal option for these patients. Half of the family members would support the patient's request for PAS, 30% would oppose it, and 19% were undecided. Low religiousness and the family member's personal health concerns were associated with increasing support by the family member for PAS for the patient. Family members were able to predict patients' political views on legalized PAS, and there was moderately high agreement among family members on political views. Family members, however, were not knowledgeable about patients' interest in PAS for themselves, and there was low agreement among dyads on whether they had discussed this issue. Improved knowledge of patient-based barriers to discussing PAS may facilitate interventions for psychosocial distress in cancer patients.

Advance Directives↗

Artificial nutrition and hydration at the end of life: ethics and evidence.

The case of Terri Schiavo resulted in substantial media attention about the use of artificial nutrition and hydration (ANH) especially by percutaneous endoscopic gastrostomy (PEG). In this article, I review ethical and legal principles governing decisions to choose or forgo ANH at the end of life, including issues of autonomy and decision-making capacity, similarities and differences between ANH and other medical treatments, the role of proxies when patients lack decision-making capacity, and the equivalence of withholding and withdrawing treatment. Evidence for palliative or life-sustaining benefits for ANH are reviewed in three disease processes: amyotrophic lateral sclerosis (ALS), cancer, and dementias, including Alzheimer's disease. Although more recent studies suggest a possible palliative role for ANH in ALS and terminal cancer, feeding tubes do not appear to prolong survival or increase comfort in advanced dementia of the Alzheimer's type.

Alzheimer Disease↗

Measuring pain as the 5th vital sign does not improve quality of pain management.

BACKGROUND: To improve pain management, the Veterans Health Administration launched the "Pain as the 5th Vital Sign" initiative in 1999, requiring a pain intensity rating (0 to 10) at all clinical encounters. OBJECTIVE: To measure the initiative's impact on the quality of pain management. DESIGN: We retrospectively reviewed medical records at a single medical center to compare providers' pain management before and after implementing the initiative and performed a subgroup analysis of patients reporting substantial pain (> or =4) during a postimplementation visit. PARTICIPANTS: Unique patient visits selected from all 15 primary care providers of a general medicine outpatient clinic. MEASUREMENTS: We used 7 process indicators of quality pain management, based on appropriately evaluating and treating pain, to assess 300 randomly selected visits before and 300 visits after implementing the pain initiative. RESULTS: The quality of pain care was unchanged between visits before and after the pain initiative (P>.05 for all comparisons): subjective provider assessment (49.3% before, 48.7% after), pain exam (26.3%, 26.0%), orders to assess pain (11.7%, 8.3%), new analgesic (8.7%, 11.0%), change in existing analgesics (6.7%, 4.3%), other pain treatment (11.7%, 13.7%), or follow-up plans (10.0%, 8.7%). Patients (n=79) who reported substantial pain often did not receive recommended care: 22% had no attention to pain documented in the medical record, 27% had no further assessment documented, and 52% received no new therapy for pain at that visit. CONCLUSIONS: Routinely measuring pain by the 5th vital sign did not increase the quality of pain management. Patients with substantial pain documented by the 5th vital sign often had inadequate pain management.

Analgesics↗

Validation of 2 depression screening tools in dialysis patients.

BACKGROUND: Depression is the most common psychiatric disorder in long-term dialysis patients and is a risk factor for morbidity and mortality. An efficient and valid method of diagnosing depression might facilitate recognition and treatment. We sought to validate 2 depression assessment tools, the 21-question Beck Depression Inventory (BDI) and the 9-question Patient Health Questionnaire (PHQ-9), in a dialysis population. METHODS: We surveyed patients who had received dialysis for at least 90 days in Portland, OR. We excluded patients with dementia, delirium, or a history of major psychiatric disorders other than depression. The Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, a gold-standard measure for depression, was administered by trained psychologists within 2 weeks of the BDI and PHQ-9. RESULTS: Of 62 enrolled subjects, 16 were diagnosed with a depressive disorder, including 12 patients (19%) with major depression, 3 patients with dysthymia, and 1 patient with minor depression. Optimal BDI and PHQ-9 cutoff values for depressive disorders combined was 16 or greater and 10 or greater, respectively. Sensitivities were 91% and 92%, specificities were 86% and 92%, positive predictive values were 59% and 71%, and negative predictive values were both 98%, with kappa values of 0.65 and 0.75, respectively. The difference between the 2 receiver operating characteristic curves was not statistically significant (P > 0.9). CONCLUSION: Our results validate the PHQ-9 and revalidate the BDI against a gold-standard measure for depressive disorders in the dialysis population. Both tools performed equally well. Because depression is prevalent, readily diagnosed, and associated with poor outcomes, screening by means of short and valid measurement tools may lead to better diagnosis and treatment of this modifiable risk factor. This may lead to improved clinical outcomes in dialysis patients.

Aged↗

Oregon hospice chaplains' experiences with patients requesting physician-assisted suicide.

BACKGROUND: Oregon's Death with Dignity Act (ODDA), which legalized physician-assisted suicide (PAS) for terminally ill individuals, was enacted in 1997. Eighty-six percent of the 171 patients who have died by PAS were enrolled in hospice. OBJECTIVE: To survey hospice chaplains regarding their views on the ODDA and experiences working with patients who request PAS. DESIGN: Single, anonymous, mailed survey. SUBJECTS: All chaplains affiliated with one of Oregon's 50 hospices. RESULTS: Fifty of 77 hospice chaplains whom we identified (65%) returned the survey. Forty-two percent of respondents opposed the ODDA and 40% supported it. Over half of respondents had, in the previous 3 years, worked with a patient who had made an explicit request for assisted suicide. Conversation with patients around PAS focused on the role of faith and spirituality in this decision, reasons for wanting hastened death, and family concerns or reactions to PAS. Chaplains did not feel that they had a strong influence on the patient's decisions about PAS (mean score of 4 on a 0-10 scale), though three chaplains reported a patient who withdrew their request for PAS because of the chaplain's involvement. Chaplains reported provision of a nonjudgmental presence helped the relationship with the patient. CONCLUSION: Oregon hospice chaplains are divided in their views on legalized PAS, but primarily see their role to deliver support to patients no matter what the patient's final decision regarding PAS.

Clergy↗

Quality of dying in the ICU: ratings by family members.

STUDY OBJECTIVES: To explore the quality of the dying experience and associations to higher quality ratings for people who died in an ICU. DESIGN: Retrospective study using medical record review and surveys of family members with the Quality of Dying and Death (QODD) instrument. SETTING: Four ICUs affiliated with a university and a Veterans Affairs Medical Center. PARTICIPANTS: Ninety-four family members of 38 ICU decedents. MEASUREMENTS AND RESULTS: We explored associations between components of the ICU experience and the overall rating of the quality of the dying experience. Overall, family members reported that symptoms were poorly controlled: pain under control most or all of the time in 47%, and breathing comfortably most or all of the time in 3% of patients. Families expressed a moderate and variable view of the quality of dying resulting in an overall ICU QODD score of 60 +/- 14 (on a scale of 0 to 100) [mean +/- SD]. Higher ICU QODD scores were associated with control of pain (r = 0.42, p = 0.009), control of events (r = 0.62, p < 0.001), a "preparation for death" aspect of the dying experience--feeling at peace with dying (r = 0.69, p < 0.001), and a "whole-person concern"--keeping one's dignity and self-respect (r = 0.50, p < 0.001). CONCLUSIONS: After adjusting for symptom and personal care scores, certain whole-person and preparation-for-death aspects of the dying process, and not aggressiveness of end-of-life care, remained the most associated to quality ratings. While future research should explore the important predictors of quality of dying in the ICU, this study suggests that care at the end of life in the ICU include not only managing pain, but also supporting dignity, respect, and peace, and maximizing patient control.

Adult↗

Family caregivers making life-sustaining treatment decisions: factors associated with role strain and ease.

Although recent studies have focused on life-sustaining treatment (LST) decision-making by families, research has not examined such decision-making as an aspect of ongoing caregiving by family caregivers. This article focuses on factors associated with family caregiver role strain and ease in LST decision-making. Using content analysis, factors were derived from interview data gathered from 17 family caregivers who had made LST decisions for 16 elderly ill relatives. The factors are incorporated in a framework, The Family Caregiving Process in Making LST Decisions for Elderly Ill Relatives, and fall under four key roles--caregiver, elderly ill relative, other family members, and health care providers. Factors affecting the strain and ease felt by family caregivers exist not only during the actual decision-making period, but also arise during the days, months, and years prior to the event and continue on after the LST decisions have been made. Nurses' knowledge of these factors can help nurses decrease family caregiver strain and increase ease during the family caregiver LST decision-making process.

Aged↗

Agreement among family members in their assessment of the Quality of Dying and Death.

Improving end-of-life care requires accurate indicators of the quality of dying. The purpose of this study was to measure the agreement among family members who rate a loved one's dying experience. We administered the Quality of Dying and Death instrument to 94 family members of 38 patients who died in the intensive care unit. We measured a quality of dying score of 60 out of 100 points and found moderate agreement among family members as measured by an intraclass correlation coefficient (ICC) of 0.44. Variability on individual items ranged from an ICC of 0.15 to 1.0. Families demonstrated more agreement on frequencies of events (ICC 0.54) than on determinations of quality (ICC 0.32). These findings reveal important variability among family raters and suggest that until the variability is understood, multiple raters may generate more comprehensive end-of-life data and may more accurately reflect the quality of dying and death.

Attitude to Death↗

Capacity to consent to research among patients with bipolar disorder.

Experts have debated the influence of mental illness on decision-making capacity. This paper reviews concepts of decision-making capacity and existing research on the influence of mental illness on capacity to consent to research. We propose how bipolar disorder, especially mania, may have an effect on consent capacity. The current conceptualization of capacity utilizes legal standards of 'choice', 'understanding', 'appreciation' and 'rational reasoning', as well as voluntarism, or the assurance that the patient is free to agree or to decline to participate in research. Studies of patients with schizophrenia suggest impaired cognition influences 'understanding' and is more important than severity of psychosis in affecting decision-making abilities. There are no studies of sources and extent of impairment to consent to research among manic patients. Mania may influence a patient's understanding of the research protocol, but also alter the patient's views, values and level of insight, thus impairing decision-making abilities at the 'appreciation' standard even when the patient understands the relevant information. Mania may impact freedom to decide, yet paradoxically, manic patients may be less influenced by others and less vulnerable to coercion, undue influence and undue incentives compared to patients without mental illness. We suggest that in patients with mood disorders, the legal standard of appreciation be thoroughly probed during the consent procedure. Studies of the effect of mania and depression on consent capacity and voluntarism are needed in order to develop processes that increase safeguards in the informed consent process.

Biomedical Research↗

Oregon physicians' responses to requests for assisted suicide: a qualitative study.

In 1997, the Oregon Death with Dignity Act was enacted, allowing physicians to prescribe lethal dosages of medication to competent, terminally ill patients who request them. To improve our understanding of physicians' reactions to requests for assisted suicide, we performed semistructured interviews of 35 Oregon physicians who had received requests from patients. Interviews were completed in 2000, and audiotaped, transcribed, and analyzed using qualitative techniques. Requests for assisted suicide had a powerful impact on physicians and their practices. Physicians often felt unprepared, and experienced apprehension and discomfort before and after receiving requests. Prominent sources of discomfort included concerns about adequately managing symptoms and suffering, not wanting to abandon patients, and incomplete understanding of patients' preferences, especially when physicians did not know patients well. Participation in assisted suicide required a large investment of time and was emotionally intense. Regardless of whether they prescribed or not, physicians did not express major regrets about their decisions. Requests often facilitated discussion of important issues, and many physicians felt that the process increased their confidence and assertiveness in discussing end-of-life issues with other patients. Physicians rarely sought support from colleagues; instead, they tended to discuss emotional aspects of their experiences with their spouses.

Attitude of Health Personnel↗

Attitudes and experiences of Oregon hospice nurses and social workers regarding assisted suicide.

BACKGROUND: When the Oregon Death with Dignity Act (ODDA) legalizing physician-assisted suicide was enacted into law in 1997, Oregon hospice clinicians were uncertain how involved they would be with patients who wanted this option. However, 86% of the 171 persons in Oregon who have died by lethal prescription were enrolled in hospice programmes. METHOD: A mailed questionnaire was sent to all hospice nurses and social workers in Oregon in 2001 (n=573) to assess their attitudes about legalized assisted suicide and interactions with patients concerning this issue. Responses from 306 nurses and 85 social workers are included in this report. FINDINGS: Almost two-thirds of respondents reported that at least one patient had discussed assisted suicide as a potential option in the past year. Social workers were generally more supportive of both the ODDA and of patients choosing assisted suicide compared to nurses. Twenty-two per cent of all respondents were not comfortable discussing assisted suicide with patients. Ninety-five per cent of both groups, however, favoured hospice policies that would allow a patient to choose assisted suicide while enrolled in hospice and allow hospice clinicians to continue to provide care. INTERPRETATIONS: Nurses and social workers in hospices and other settings can expect to encounter patient questions about physician-assisted suicide, whether legalized or not, and must be prepared to have these discussions. Most hospice professionals in Oregon do not believe that assisted suicide and hospice enrollment are mutually exclusive alternatives.

Attitude of Health Personnel↗

Voluntary refusal of food and fluids: attitudes of Oregon hospice nurses and social workers.

As the ethical debate about euthanasia and physician-assisted suicide (PAS) continues, one alternative that has been suggested is for the patient to voluntarily refuse all food and fluids (VRFF). The article describes the results of a study of hospice nurses' and social workers' attitudes towards VRFF and compares them with their attitudes towards PAS. In 2001, a questionnaire was posted to nurses and social workers who care for Oregon residents enrolled in hospice programmes to determine their attitudes towards PAS and VRFF. In general, hospice workers expressed support for patients who choose to hasten their death by VRFF; they were less supportive of PAS. The results from this study suggest that perceptions regarding VRFF are significantly different from those regarding PAS. These results may have important clinical implications for nurses and social workers involved in end-of-life care who encounter patients who wish to hasten their deaths.

Adult↗