Elizabeth R. Goy

Oregonians' Reasons for Requesting Physician Aid in Dying

BACKGROUND Oregon is the only US jurisdiction with a legal process, the Oregon Death with Dignity Act, that allows terminally ill patients to obtain physician aid in dying (PAD). METHODS Fifty-six Oregonians who either requested PAD or contacted a PAD advocacy organization completed a survey indicating the importance of 29 reasons for their interest in PAD on a scale where 1 was not important and 5 was very important; 28% of people referred from the PAD advocacy organization enrolled in the study. RESULTS Forty-one patients died by the end of the study; 18 received a prescription for medication under the Oregon Death with Dignity Act, and 9 died by lethal dose of medication. The most important reasons for requesting PAD, all with median scores of 5, were wanting to control the circumstances of death and die at home; loss of independence; and concerns about future pain, poor quality of life, and inability to care for ones self. All physical symptoms (eg, pain, dyspnea, and fatigue) at the time of the interview were rated as unimportant (median score, 1), but concerns about physical symptoms in the future were rated at a median score of 3 or higher. Lack of social support and depressed mood were rated as unimportant reasons for requesting PAD. CONCLUSIONS At the time they express initial interest in PAD, Oregonians are motivated by worries about future physical discomfort and losses of autonomy and function. When confronted with a request for PAD, health care providers should first work to bolster the patients sense of control and to educate and reassure the patient regarding management of future symptoms.

Why Oregon Patients Request Assisted Death: Family Members’ Views

BACKGROUNDPhysician assisted death (PAD) was legalized through Oregon’s Death with Dignity Act in 1994 and enacted in 1997.OBJECTIVEThe objective of this paper was to learn from family members why their loved ones requested PAD.DESIGNThis study used the cross-sectional survey.PARTICIPANTSParticipants of this study included family members of 83 Oregon decedents who made explicit requests for legalized PAD before their deaths, including 52 decedents who received prescriptions for a lethal medication and 32 who died of PAD.MEASUREMENTSFamily members rated the importance of 28 possible reasons their loved ones requested PAD on a 1–5 Likert scale, with higher scores representing greater importance.RESULTSAccording to family members, the most important reasons that their loved ones requested PAD, all with a median score of 4.5 or greater, were wanting to control the circumstances of death and die at home, and worries about loss of dignity and future losses of independence, quality of life, and self-care ability. No physical symptoms at the time of the request were rated higher than a median of 2 in importance. Worries about symptoms and experiences in the future were, in general, more important reasons than symptoms or experiences at the time of the request. According to family members, the least important reasons their loved ones requested PAD included depression, financial concerns, and poor social support.CONCLUSIONSInterventions that help patients maintain control, independence, and self-care in a home environment may be effective means of addressing serious requests for PAD.

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 enrolment are mutually exclusive alternatives.

Quality of Death and Dying in Patients who Request Physician-Assisted Death

BACKGROUND Physician-assisted death (PAD) was legalized in 1997 by Oregons Death with Dignity Act (ODDA). Through 2009, 460 Oregonians have died by lethal prescription under the ODDA. OBJECTIVE To determine whether there was a difference in the quality of the dying experience, from the perspective of family members, between 52 Oregonians who received lethal prescriptions, 34 who requested but did not receive lethal prescriptions, and 63 who did not pursue PAD. DESIGN Cross-sectional survey. MEASUREMENTS Family members retrospectively rated the dying experience of their loved one with the 33 item Quality of Death and Dying Questionnaire (QODD). RESULTS There were differences reported in 9 of the 33 quality item indicators. Few significant differences were noted in items that measured domains of connectedness, transcendence, and overall quality of death. Those receiving PAD prescriptions had higher quality ratings on items measuring symptom control (e.g., control over surroundings and control of bowels/bladder) and higher ratings on items related to preparedness for death (saying goodbye to loved ones, and possession of a means to end life if desired) than those who did not pursue PAD or, in some cases, those who requested but did not receive a lethal prescription. CONCLUSIONS The quality of death experienced by those who received lethal prescriptions is no worse than those not pursuing PAD, and in some areas it is rated by family members as better.

Traumatic brain injury and psychogenic seizures in veterans

Objective:To evaluate a proposed seizure etiology of traumatic brain injury (TBI) as a risk factor for psychogenic nonepileptic seizures (PNESs), the effect of reported TBI severity on the diagnosis of PNES versus epileptic seizures (ESs), and the potential moderating role of posttraumatic stress disorder (PTSD). Participants, Setting:Veterans with a diagnosis of PNES or ES during epilepsy monitoring at a Veterans Affairs Medical Center. Design:Retrospective review of seizure type, proposed seizure etiology, TBI severity, and PTSD. Main Outcomes:Both PNES and ES groups were compared for TBI history and severity, and prior diagnosis of PTSD. Results:Traumatic brain injury was the proposed seizure etiology for 57% of 67 PNES patients versus 35% of 54 ES patients (P < .05). It was mild in 87% of PNES patients and 37% of ES patients (P < .001). Posttraumatic stress disorder increased the likelihood of diagnosing PNES versus ES in Veterans with mild TBI as the proposed seizure etiology. Conclusions:Veterans with PNES commonly cite a TBI as the cause for seizures. Mild TBI was strongly associated with PNES versus ES. Posttraumatic stress disorder may moderate the development of PNES in Veterans with a history of mild TBI. Clinicians caring for Veterans with seizures may use these results in selecting patients for early diagnostic evaluation.

Prevalence of formal accusations of murder and euthanasia against physicians

BACKGROUND Little is known about how often physicians are formally accused of hastening patient deaths while practicing palliative care. METHODS We conducted an Internet-based survey on a random 50% sample of physician-members of a national hospice and palliative medicine society. RESULTS The final sample consisted of 663 physicians (response rate 53%). Over half of the respondents had had at least one experience in the last 5 years in which a patients family, another physician, or another health care professional had characterized palliative treatments as being euthanasia, murder, or killing. One in four stated that at least one friend or family member, or a patient had similarly characterized their treatments. Respondents rated palliative sedation and stopping artificial hydration/nutrition as treatments most likely to be misconstrued as euthanasia. Overall, 25 physicians (4%) had been formally investigated for hastening a patients death when that had not been their intention-13 while using opiates for symptom relief and six for using medications while discontinuing mechanical ventilation. In eight (32%) cases, another member of the health care team had initiated the charges. At the time of the survey, none had been found guilty, but they reported experiencing substantial anger and worry. CONCLUSIONS Commonly used palliative care practices continue to be misconstrued as euthanasia or murder, despite this not being the intention of the treating physician. Further efforts are needed to explain to the health care community and the public that treatments often used to relieve patient suffering at the end of life are ethical and legal.

Predictors of Pursuit of Physician-Assisted Death

CONTEXT Physician-assisted death (PAD) was legalized in 1997 by Oregons Death with Dignity Act. The States of Washington, Montana, Vermont, and New Mexico have since provided legal sanction for PAD. Through 2013, 1173 Oregonians have received a prescription under the Death with Dignity Act and 752 have died after taking the prescribed medication in Oregon. OBJECTIVES To determine the predictive value of personal and interpersonal variables in the pursuit of PAD. METHODS Fifty-five Oregonians who either requested PAD or contacted a PAD advocacy organization were compared with 39 individuals with advanced disease who did not pursue PAD. We compared the two groups on responses to standardized measures of depression, hopelessness, spirituality, social support, and pain. We also compared the two groups on style of attachment to intimate others and caregivers as understood through attachment theory. RESULTS We found that PAD requesters had higher levels of depression, hopelessness, and dismissive attachment (attachment to others characterized by independence and self-reliance), and lower levels of spirituality. There were moderate correlations among the variables of spirituality, hopelessness, depression, social support, and dismissive attachment. There was a strong correlation between depression and hopelessness. Low spirituality emerged as the strongest predictor of pursuit of PAD in the regression analysis. CONCLUSION Although some factors motivating pursuit of PAD, such as depression, may be ameliorated by medical interventions, other factors, such as style of attachment and sense of spirituality, are long-standing aspects of the individual that should be supported at the end of life. Practitioners must develop respectful awareness and understanding of the interpersonal and spiritual perspectives of their patients to provide such support.

End-of-life care in geriatric psychiatry

Depression, anxiety and delirium are relatively common during the final stages of terminal disease, and each can profoundly impact the quality of those last days for both patient and involved family. In this article the authors review the assessment and treatment of each syndrome in the context of palliative care for older adults. Treatment of mental disorders at the end of life warrants special consideration due to the need to balance the benefits of treatment against the potential burden of the intervention, especially those that might worsen quality of life. Dementia and the complications of depression and behavioral disturbance within dementia are also discussed. Finally, caregivers of dying patients are vulnerable to stress, depression, grief, and complicated bereavement. Interventions for caregivers who are debilitated by these states are briefly summarized.

Prevalence and Natural History of Neuropsychiatric Syndromes in Veteran Hospice Patients

CONTEXT Prospective studies are needed to adequately describe the overall impact of neuropsychiatric syndromes on the course of hospice enrollment in outpatient settings. OBJECTIVES To determine the prevalence and natural history of delirium, cognitive impairment, alcohol abuse, anxiety, depression, and suicidal ideation (SI) in community-dwelling veteran hospice patients. METHODS Home hospice patients were visited regularly from enrollment until their deaths, study withdrawal, or discharge from hospice. Family caregivers gave consent for those with Mini-Mental State Examination (MMSE) scores less than or equal to 23. Measures included the Structured Clinical Interview for DSM-IV for depression (past and current) and alcohol abuse; the Hospital Anxiety and Depression Scale; MMSE; and Confusion Assessment Method (CAM). A clinician-rated CAM item documented sleep disturbance, and participants were asked about SI at each visit. RESULTS The median length of hospice enrollment was 81 days. Of 88 participants, 77 (88%) experienced at least one neuropsychiatric syndrome. Cognitive impairment was prevalent, with 60 (68%) registering MMSE less than or equal to 23 at least once. More than half of the participants developed delirium; the proportion with delirium, any cognitive impairment, sleep disturbance, or any neuropsychiatric syndrome increased significantly from first to last study visit. Twelve (14%) participants had SI during the study, and 30 (34%) participants were affected by depression overall. Sixteen patients who were not depressed on admission subsequently developed depression. Anxiety was present in 14 (16%) on at least one study visit. Active alcohol abuse remained relatively stable (8%) across visits. CONCLUSIONS Psychiatric syndromes are highly prevalent in hospice patients. Systematic case finding of psychiatric disorders may be necessary to improve quality of life in the last months of life.

Identifying predictors of hospice eligibility in patients with Parkinson disease.

This study aims to improve recognition of hospice eligibility for patients with Parkinson disease (PD) by ascertaining which variables have a higher probability of occurring uniquely in 6 to 12 months before death when compared to 18 to 24 months before death. Participants were 339 patients who died who were diagnosed with PD or Parkinsonism and treated with dopaminergic prescriptions for at least 3 years in northwestern US Veterans Affairs medical centers. A range of indicators were compared across 3 time periods (30-36 months, 24-18 months, and 12-6 months before death) using within-subjects repeated measures design. Results indicate that body mass index less than 18, alone or combined with a shift in prescribing (when benefits of dopaminergic medications no longer outweigh their risk of side effects), may signal appropriate timing for hospice referral.