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.

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.

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.

Why Oregon patients request assisted death: family members' views.

BACKGROUND: Physician assisted death (PAD) was legalized through Oregon's Death with Dignity Act in 1994 and enacted in 1997. OBJECTIVE: The objective of this paper was to learn from family members why their loved ones requested PAD. DESIGN: This study used the cross-sectional survey. PARTICIPANTS: Participants 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. MEASUREMENTS: Family 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. RESULTS: According 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. CONCLUSIONS: Interventions that help patients maintain control, independence, and self-care in a home environment may be effective means of addressing serious requests for PAD.

Determinants of Oregon hospice chaplains' views on physician-assisted suicide.

BACKGROUND: Although religiousness is a strong predictor of attitudes towards physician-assisted suicide (PAS), Oregon hospice chaplains express wide variation in their opposition to or support for legalized PAS. We explored factors associated with chaplains' views on PAS. METHODS: A mailed survey to chaplains from 51 Oregon hospices. RESULTS: Fifty of 77 eligible hospice chaplains (65%) returned surveys. Views on PAS were associated with views on suicide in general. Moral and theological beliefs were the most important influences on views on PAS. Chaplains who were opposed to PAS believed that God alone may take life, that life is an absolute good, and that suffering has a divine purpose. Those who supported PAS placed emphasis on the importance of self-determination and sanctity of life as defined by quality of life. CONCLUSIONS: Oregon hospice chaplains' diverse views towards PAS are closely related to their views on suicide in general, and their personal and theological beliefs.

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.

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.

Nurses' experiences with hospice patients who refuse food and fluids to hasten death.

BACKGROUND: Voluntary refusal of food and fluids has been proposed as an alternative to physician-assisted suicide for terminally ill patients who wish to hasten death. There are few reports of patients who have made this choice. METHODS: We mailed a questionnaire to all nurses employed by hospice programs in Oregon and analyzed the results. RESULTS: Of 429 eligible nurses, 307 (72 percent) returned the questionnaire, and 102 of the respondents (33 percent) reported that in the previous four years they had cared for a patient who deliberately hastened death by voluntary refusal of food and fluids. Nurses reported that patients chose to stop eating and drinking because they were ready to die, saw continued existence as pointless, and considered their quality of life poor. The survey showed that 85 percent of patients died within 15 days after stopping food and fluids. On a scale from 0 (a very bad death) to 9 (a very good death), the median score for the quality of these deaths, as rated by the nurses, was 8. On the basis of the hospice nurses' reports, the patients who stopped eating and drinking were older than 55 patients who died by physician-assisted suicide (74 vs. 64 years of age, P<0.001), less likely to want to control the circumstances of their death (P<0.001), and less likely to be evaluated by a mental health professional (9 percent vs. 45 percent, P<0.001). CONCLUSIONS: On the basis of reports by nurses, patients in hospice care who voluntarily choose to refuse food and fluids are elderly, no longer find meaning in living, and usually die a "good" death within two weeks after stopping food and fluids.

Psychological and psychiatric aspects of palliative care: an annotated bibliography.

Articles from the last decade that have propelled the field of palliative care are reviewed. The areas of depression, anxiety, substance abuse, delirium, and grief are represented by seminal articles that define, explore, or thoroughly review these topics.

Oregon hospice nurses and social workers' assessment of physician progress in palliative care over the past 5 years.

BACKGROUND: The 1997 enactment of the Oregon Death with Dignity Act intensified interest in improving physician education and skills in caring for patients at the end of life. OBJECTIVE: To obtain hospice nurse and social workers' collateral ratings of efforts made by Oregon physicians to improve their palliative care skills over the previous 5 years. DESIGN: A descriptive survey of nurses and social workers from all 50 Oregon outpatient hospice agencies. MEASUREMENT AND RESULTS: Oregon hospice nurse (N=185) and social worker (N=52) respondents, who had worked in hospice for at least 5 years, rated changes they observed over the past 5 years in physicians' approach to caring for their hospice clients. Six characteristics, including willingness to refer patients to hospice, willingness to prescribe sufficient pain medications, knowledge about using pain medications in hospice patients, interest in caring for hospice patients, competence in caring for hospice patients, and fearfulness of prescribing sufficient opioid medications were evaluated. Positive changes were endorsed by the majority of respondents on all but the scale measuring fearfulness of prescribing opioid medications; on the latter, 47% of nurses rated doctors as less fearful, whereas 53% rated them as about the same or more fearful than they were 5 years earlier. CONCLUSIONS: Most respondents rated Oregon physicians as showing improvements in knowledge and willingness to refer and care for hospice patients.