Prognostic predictors relevant to end-of-life palliative care in Parkinson's disease and related disorders: a systematic review.

Parkinson's disease and related disorders (PDRD) are the second most common neurodegenerative disease and a leading cause of death. However, patients with PDRD receive less end-of-life palliative care (hospice) than other illnesses, including other neurologic illnesses. Identification of predictors of PDRD mortality may aid in increasing appropriate and timely referrals. To systematically review the literature for causes of death and predictors of mortality in PDRD to provide guidance regarding hospice/end-of-life palliative care referrals. We searched MEDLINE, PubMed, EMBASE and CINAHL databases (1970-2020) of original quantitative research using patient-level, provider-level or caregiver-level data from medical records, administrative data or survey responses associated with mortality, prognosis or cause of death in PDRD. Findings were reviewed by an International Working Group on PD and Palliative Care supported by the Parkinson's Foundation. Of 1183 research articles, 42 studies met our inclusion criteria. We found four main domains of factors associated with mortality in PDRD: (1) demographic and clinical markers (age, sex, body mass index and comorbid illnesses), (2) motor dysfunction and global disability, (3) falls and infections and (4) non-motor symptoms. We provide suggestions for consideration of timing of hospice/end-of-life palliative care referrals. Several clinical features of advancing disease may be useful in triggering end-of-life palliative/hospice referral. Prognostic studies focused on identifying when people with PDRD are nearing their final months of life are limited. There is further need for research in this area as well as policies that support need-based palliative care for the duration of PDRD.

Validity testing in veterans with epileptic seizures and psychogenic nonepileptic seizures.

OBJECTIVE: Identification of clinically meaningful subgroups among patients with psychogenic nonepileptic seizures (PNES) or epileptic seizures (ES) is of potential value for assessing prognosis and predicting therapeutic response. Invalid performance on validity tests has been associated with noncredible complaints and worse cognitive test scores, and may be one such classification criteria. We studied invalid performance in Veterans with PNES or ES, and the association of invalid performance with cognitive test scores and subjective complaints. METHODS: Patients were consecutive admissions to three veterans affairs (VA) epilepsy monitoring units. Evaluations included two validity tests: the Test of Memory Malingering (TOMM); and the Minnesota Multiphasic Personality Inventory-2-Restructured Form (MMPI-2-RF) over-reporting validity scales. We compared the frequency of invalid performance on the TOMM or MMPI-2-RF in patients diagnosed with PNES vs. ES. We evaluated the association of invalid performance with scores on the Repeatable Battery for Assessment of Neuropsychological Status (RBANS), and four subjective symptom measures including the Beck Depression Inventory-II, and Quality of Life in Epilepsy-31. RESULTS: Invalid TOMM performance was found in 25.3% of Veterans diagnosed with PNES and 10.8% of those with ES (p = .03). Invalid reporting on the MMPI-2-RF was found in 35.9% of the PNES group vs. 15.3% of the ES group (p = .01). Effects of valid vs. invalid reporting on external measures were similar for ES and PNES groups. Patients with invalid vs. valid TOMM performance had lower scores on the RBANS (p < .001). Patients with invalid performance had greater complaints on all subjective measures, with largest effect sizes for the MMPI-2-RF validity scales (p < .001). SIGNIFICANCE: In Veterans admitted for evaluation of poorly controlled seizures, invalid performance on validity tests was not uncommon. Cognitive test results and subjective reports from patients with invalid performance may not be credible. These observations have implications for the analysis of clinical trials, where primary and secondary outcomes often rely on self-report measures.

Health-related quality of life in Veterans with epileptic and psychogenic nonepileptic seizures.

RATIONALE: Health-related quality of life (HRQoL) is compromised in civilians with epileptic seizures (ES) or psychogenic nonepileptic seizures (PNES). U.S. Veterans are a distinct patient group with regard to gender, age, and background. We studied HRQoL in Veterans and asked the following: (1) Is there a difference in HRQoL in Veterans with ES vs. PNES?; (2) What factors influence HRQoL in each group?; (3) What factors influenced the difference between seizure groups? METHODS: We studied consecutive Veterans entering the epilepsy monitoring units (EMUs) of three VA Epilepsy Centers of Excellence. Patients underwent continuous video-EEG monitoring. Seizure diagnoses followed established criteria. Health-related quality of life was measured with the Quality of Life in Epilepsy Inventory-31 (QOLIE-31). Evaluations included the Structured Clinical Interview for Diagnostic and Statistical Manual-IV (DSM IV), the posttraumatic stress disorder (PTSD) Checklist (PCL), the Beck Depression Inventory II (BDI-II), and the Minnesota Multiphasic Personality Inventory-2 Restructured form (MMPI-2RF). Between-group differences were tested with Wilcoxon tests. Nested regression analysis was used to evaluate the influence of demographic, social, military, seizure-related, and psychological factors on QOLIE-31 scores. RESULTS: The median QOLIE-31 total score was 14 points lower in Veterans with PNES vs. ES (p < 0.001; Cohen's d = 0.73). Within each seizure group, psychological factors accounted for ≥50% of the variance in QOLIE scores while combined demographic, social, and seizure-related factors accounted for 18% (group with ES) and 7% (PNES). Psychological measures, particularly PCL and the BDI-II scores, accounted for all of the difference in QOLIE-31 total scores between Veterans with ES and those with PNES. CONCLUSIONS: Health-related quality of life as measured by the QOLIE-31 is worse in Veterans with PNES as compared with those with ES. Psychological factors account for the most of the variance in QOLIE-31 scores regardless of seizure type and also account for the difference between groups with PNES and ES. Demographic, military, social, and seizure-related factors have minimal influence on HRQoL. These results in U.S. Veterans are similar to those found in civilians despite differences in patient age, gender, and background.

Psychiatric comorbidity and traumatic brain injury attribution in patients with psychogenic nonepileptic or epileptic seizures: A multicenter study of US veterans.

OBJECTIVE: To determine the frequency and severity of psychiatric disorders and attribution of seizures to traumatic brain injury (TBI) in veterans with verified psychogenic nonepileptic seizures (PNES) versus epileptic seizures (ES). METHODS: We studied 333 consecutive admissions to the monitoring units of three Veterans Administration epilepsy centers. All patients underwent continuous video-electroencephalographic recording to define definite PNES or ES. Evaluations included the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, 4th edition, PTSD Checklist, Beck Depression Inventory II, and Patient Seizure Etiology Questionnaire. Interviews and questionnaires were completed prior to final seizure type diagnosis and patient debriefing. The primary outcome measure was a comparison of Axis I psychiatric diagnoses in patients diagnosed with PNES versus ES. RESULTS: A total of 81 patients were diagnosed with PNES, and 70 with ES. PTSD was the most frequent Axis I diagnosis in veterans with PNES (64%, vs 13% of those with ES; P < 0.001). Posttraumatic stress disorder (PTSD) was common regardless of deployment to a war theater or combat exposure. Mood, substance abuse, and anxiety disorders were also more common in the PNES group. TBI was cited as a likely cause of seizures by 47% of veterans with PNES versus 25% of those with ES (P = 0.01). PTSD and attribution of seizures to TBI were found in 30% of veterans with PNES versus 3% of those with ES (P < 0.001). SIGNIFICANCE: In veterans referred for inpatient seizure evaluation, PTSD was strongly associated with a diagnosis of PNES versus ES. The association of PNES with PTSD, attribution of seizures to TBI, or both, may prompt early consideration of PNES.

Randomized, double-blind, placebo-controlled study of methylphenidate for the treatment of depression in SSRI-treated cancer patients receiving palliative care.

OBJECTIVE: To determine the effectiveness of methylphenidate for depression treatment in patients with advanced cancer. DESIGN: An 18-day randomized, double-blind, placebo-controlled clinical trial of methylphenidate for treatment of depression in selective serotonin reuptake inhibitor-treated patients with advanced cancer in hospice or receiving palliative care. The primary outcome was depression remission, defined as a ≥50% reduction in score on the Montgomery-Asberg Depression Rating Scale. RESULTS: Among 47 enrolled participants, 34 were randomized. At study day 18, 85% of the methylphenidate and 60% of the placebo group were in depression remission (P = .22). Mean time to depression remission was 10.3 days [standard error (SE) 1.8] in the methylphenidate and 8.1 (SE 1.3) in the placebo group (P = .48). The mean baseline score for the Hospital Anxiety and Depression Scale (HADS) was 10.4 in each group and decreased by 3.6 (SE 1.1) in the methylphenidate and 2.3 (SE 1.2) in the placebo group (P = .51) by day 18. Once in remission, 1 methylphenidate and 5 placebo participants relapsed to depression (P = .18). There was no difference in mortality between the groups during the trial. Trial results were limited by small sample size attributed to difficulties in recruiting terminally ill patients. CONCLUSIONS: This trial failed to demonstrate that methylphenidate treatment in selective serotonin reuptake inhibitor-treated patients had a significant effect on depression remission in patients with advanced cancer. This study underscores the difficulties in conducting trials for symptom management in patients with shortened life expectancy.

Health care utilization following diagnosis of psychogenic nonepileptic seizures.

OBJECTIVES: The long-term outcome of patients with psychogenic nonepileptic seizures (PNES) is of importance given the disabling symptoms and tendency to affect patients early in their productive years. Health care utilization (HCU) is an important outcome measure reflecting overall health status and costs. There is little information regarding long-term HCU following diagnosis of PNES. METHODS: We retrospectively reviewed records of Veterans diagnosed with PNES during epilepsy monitoring unit (EMU) evaluation. For the three-year period following diagnosis of PNES, we reviewed emergency department (ED) visits, hospitalizations, outpatient clinic visits, and radiology procedures. We compared the three years following PNES diagnosis with the three years preceding diagnosis. We also compared patients with PNES and patients with epileptic seizures (ES). RESULTS: Emergency department visits and hospitalizations were more frequent in patients with PNES compared with those in patients with ES (p=0.01). There was no overall improvement in HCU during the three-year interval following diagnosis of PNES. A transient decrease during the year following diagnosis was not sustained over three-year follow-up. Pain complaints rather than seizures were the most common reason for presentation, whereas the opposite was true for patients with ES (p<0.01). There was a sharp decrease in neurology outpatient visits (p<0.001) and a decrease in primary care visits (p<0.05) after PNES was diagnosed. Total outpatient visits were unchanged. CONCLUSIONS: Overall HCU did not improve during the three years following diagnosis of PNES, compared with three years preceding diagnosis. The results add to studies documenting poor seizure outcomes following diagnosis of PNES and underscore the need for more effective and comprehensive treatments, addressing comorbid symptoms.

Mechanistic Pathways of Mindfulness Meditation in Combat Veterans With Posttraumatic Stress Disorder.

OBJECTIVE: This study's objective was to evaluate the effect of two common components of meditation (mindfulness and slow breathing) on potential mechanistic pathways. METHODS: A total of 102 combat veterans with posttraumatic stress disorder (PTSD) were randomized to (a) the body scan mindfulness meditation (MM), (b) slow breathing (SB) with a biofeedback device, (c) mindful awareness of the breath with an intention to slow the breath (MM+SB), or (d) sitting quietly (SQ). Participants had 6 weekly one-on-one sessions with 20 minutes of daily home practice. The mechanistic pathways and measures were as follows: (a) autonomic nervous system (hyperarousal symptoms, heart rate [HR], and heart rate variability [HRV]); (b) frontal cortex activity (attentional network task [ANT] conflict effect and event-related negativity and intrusive thoughts); and (c) hypothalamic-pituitary-adrenal axis (awakening cortisol). PTSD measures were also evaluated. RESULTS: Meditation participants had significant but modest within-group improvement in PTSD and related symptoms, although there were no effects between groups. Perceived impression of PTSD symptom improvement was greater in the meditation arms compared with controls. Resting respiration decreased in the meditation arms compared with SQ. For the mechanistic pathways, (a) subjective hyperarousal symptoms improved within-group (but not between groups) for MM, MM+SB, and SQ, while HR and HRV did not; (b) intrusive thoughts decreased in MM compared with MM+SB and SB, while the ANT measures did not change; and (c) MM had lower awakening cortisol within-group (but not between groups). CONCLUSION: Treatment effects were mostly specific to self-report rather than physiological measures. Continued research is needed to further evaluate mindfulness meditation's mechanism in people with PTSD.

Predictors of pursuit of physician-assisted death.

CONTEXT: Physician-assisted death (PAD) was legalized in 1997 by Oregon's 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.

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.

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 patient's 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 patient's 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.

Sleep quality and its association with delirium among veterans enrolled in hospice.

OBJECTIVES: : The objectives of this study were to describe sleep quality and evaluate the association of sleep quality with delirium onset among patients enrolled in hospice. DESIGN: : The study utilized secondary data from a prospective, observational, longitudinal study. SETTING: : Veterans enrolled in hospice were recruited from the Portland Veterans Affairs Medical Center, Portland, Oregon. PARTICIPANTS: : The cohort consisted of 105 patients, of whom 73% had at least one sleep measurement. MEASUREMENTS: : Sleep quality was measured with the Pittsburgh Sleep Quality Index. Delirium was measured with the Confusion Assessment Method. Other important variables were recorded from the medical record and/or longitudinal interviews with patients and their caregivers. Cox regression was used to estimate hazard ratios (HRs) to measure the association between sleep quality and delirium onset. RESULTS: : Of the patients who could be assessed, 44% had poor average sleep quality and 58% reported at least one episode of poor sleep. Overall, sleep quality did not appear to worsen as patients neared death although an increasing number of patients were unable to report on sleep quality. Poor sleep quality was associated with an increased risk of developing delirium, with an HR of 2.37 (95% CI: 1.50-3.74), for every one point worsening in the sleep quality score on a 4-point scale. CONCLUSIONS: : Poor sleep quality was common among Veteran patients enrolled in hospice. These findings may help guide decision making between clinicians, patients, and families regarding the likely impact of sleep disturbance and may help identify patients at higher risk of developing delirium.

Quality of death and dying in patients who request physician-assisted death.

BACKGROUND: Physician-assisted death (PAD) was legalized in 1997 by Oregon's 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.

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.

Attachment styles of Oregonians who request physician-assisted death.

OBJECTIVE: Qualitative analyses suggest that requests for physician-assisted death (PAD) may often be the culmination of a person's lifelong pattern of concern with issues such as control, autonomy, self-sufficiency, distrust of others, and avoidance of intimacy. Such characteristics may be measured by attachment style. We compared family members' reports of attachment style in Oregonians who did and did not request PAD. METHOD: Eighty-four family members of terminally ill patients who requested PAD before death and 63 members of a comparison group that included family members of terminally ill Oregonians who died without requesting PAD rated their loved ones' attachment style in a one-time survey. RESULTS: Individuals who requested PAD were most often described as having dismissive personality styles (56%) compared to 41% of comparison individuals, and on continuous measures of relational style, the highest mean score among PAD requesters was for dismissive style. There were marginally significant differences in the proportions of each attachment style when comparing the two groups (p = 0.08). SIGNIFICANCE OF RESULTS: Patients' attachment styles may be an important factor in requests for PAD. Recognition of a patient's attachment style may improve the ability of the physician to maintain a constructive relationship with the patient throughout the dying process.

Mental health outcomes of family members of Oregonians who request physician aid in dying.

Oregon legalized physician aid in dying over 10 years ago but little is known about the effects of this choice on family members' mental health. We surveyed 95 family members of decedent Oregonians who had explicitly requested aid in dying, including 59 whose loved one received a lethal prescription and 36 whose loved one died by lethal ingestion. For comparison purposes, family members of Oregonians who died of cancer or amyotrophic lateral sclerosis also were surveyed. A mean of 14 months after death, 11% of family members whose loved one requested aid in dying had major depressive disorder, 2% had prolonged grief, and 38% had received mental health care. Among those whose family member requested aid in dying, whether or not the patient accessed a lethal prescription had no influence on subsequent depression, grief, or mental health services use; however, family members of Oregonians who received a lethal prescription were more likely to believe that their loved one's choices were honored and less likely to have regrets about how the loved one died. Comparing family members of those who requested aid in dying to those who did not revealed no differences in primary mental health outcomes of depression, grief, or mental health services use. Family members of Oregonians who requested aid in dying felt more prepared and accepting of the death than comparison family members. In summary, pursuit of aid in dying does not have negative effects on surviving family members and may be associated with greater preparation and acceptance of death.

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 one's 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 patient's sense of control and to educate and reassure the patient regarding management of future symptoms.

Prevalence of depression and anxiety in patients requesting physicians' aid in dying: cross sectional survey.

OBJECTIVE: To determine the prevalence of depression and anxiety in terminally ill patients pursuing aid in dying from physicians. DESIGN: Cross sectional survey. SETTING: State of Oregon, USA. PARTICIPANTS: 58 Oregonians, most terminally ill with cancer or amyotrophic lateral sclerosis, who had either requested aid in dying from a physician or contacted an aid in dying advocacy organisation. MAIN OUTCOME MEASURES: Diagnosis of depression or anxiety according to the hospital anxiety and depression scale and the structured clinical interview for the Diagnostic and Statistical Manual of Mental Disorders. RESULTS: 15 study participants met "caseness" criteria for depression, and 13 met criteria for anxiety. 42 patients died by the end of the study; 18 received a prescription for a lethal drug under the Death with Dignity Act, and nine died by lethal ingestion. 15 participants who received a prescription for a lethal drug did not meet criteria for depression; three did. All three depressed participants died by legal ingestion within two months of the research interview. CONCLUSION: Although most terminally ill Oregonians who receive aid in dying do not have depressive disorders, the current practice of the Death with Dignity Act may fail to protect some patients whose choices are influenced by depression from receiving a prescription for a lethal drug.

Needs and experiences of caregivers for family members dying with Parkinson disease.

The caregiver burdens and unmet needs of patients with Parkinson disease (PD) in the final months of life are poorly documented. We surveyed 47 family caregivers of PD patients a median of 18 months after death. We measured caregiver preparedness for their role, assistance provided the patient, and types and settings of care received by the patient. Typical caregivers were older female spouses. Though 66% of patients resided in a care facility during the last month, over half received care from hospice, 36% from a home health agency, and 43% by privately paid aide in the months before death. Caregivers rated tasks involving physical effort as most difficult. While most caregivers felt prepared for their role, one-third or more were unprepared for the stress and physical strain encountered. These data suggest that increasing education and assistance with physical tasks may address unmet needs of PD caregivers.