Person:

Block, Susan

Background: Delirium, a common complication of advanced cancer, may put caregivers at risk for poor mental health outcomes. We looked for a relationship between caregiver-perceived delirium in a patient with advanced cancer and rates of caregiver psychiatric disorders.

Methods: Using cross-sectional data from 200 caregivers of patients with cancer with a life expectancy of less than 6 months, we determined the frequency of caregiver-perceived delirium, which was defined as caregivers who reported witnessing the patient “confused, delirious” on the Stressful Caregiving Response to Experiences of Dying (SCARED) weekly or more often. We tested for associations between caregiver-reported delirium and presence of caregiver mental disorders, using the Structured Clinical Interview for the DSM-IV to diagnose mental disorders and caregiver burden, as measured by the caregiver burden scale (CBS).

Results: Of the 200 caregivers who completed the SCARED, 38 (19.0%) reported seeing the patient “confused, delirious” at least once per week in the month prior to study enrollment and 7 (3.5%) met criteria for generalized anxiety (GA). Caregivers of patients with caregiver-perceived delirium were 12 times more likely to have GA (odds ratio [OR] 12.12; p < 0.01). The relationship between caregiver-perceived delirium and caregiver GA persisted after adjusting for caregiver burden and exposure to other stressful patient experiences (OR = 9.99; p = 0.04).

Conclusions: This is the first report of an association between caregiver-perceived delirium and a caregiver mental health outcome. Further studies, using improved measures of delirium, are needed.

Background: Bereavement is a universal experience, and its association with excess morbidity and mortality is well established. Nevertheless, grief becomes a serious health concern for a relative few. For such individuals, intense grief persists, is distressing and disabling, and may meet criteria as a distinct mental disorder. At present, grief is not recognized as a mental disorder in the DSM-IV or ICD-10. The goal of this study was to determine the psychometric validity of criteria for prolonged grief disorder (PGD) to enhance the detection and potential treatment of bereaved individuals at heightened risk of persistent distress and dysfunction.
Methods and Findings: A total of 291 bereaved respondents were interviewed three times, grouped as 0–6, 6–12, and 12–24 mo post-loss. Item response theory (IRT) analyses derived the most informative, unbiased PGD symptoms. Combinatoric analyses identified the most sensitive and specific PGD algorithm that was then tested to evaluate its psychometric validity. Criteria require reactions to a significant loss that involve the experience of yearning (e.g., physical or emotional suffering as a result of the desired, but unfulfilled, reunion with the deceased) and at least five of the following nine symptoms experienced at least daily or to a disabling degree: feeling emotionally numb, stunned, or that life is meaningless; experiencing mistrust; bitterness over the loss; difficulty accepting the loss; identity confusion; avoidance of the reality of the loss; or difficulty moving on with life. Symptoms must be present at sufficiently high levels at least six mo from the death and be associated with functional impairment. Conclusions: The criteria set for PGD appear able to identify bereaved persons at heightened risk for enduring distress and dysfunction. The results support the psychometric validity of the criteria for PGD that we propose for inclusion in DSM-V and ICD-11.

Importance More patients with cancer use hospice currently than ever before, but there are indications that care intensity outside of hospice is increasing, and length of hospice stay decreasing. Uncertainties regarding how hospice affects health care utilization and costs have hampered efforts to promote it.

Objective To compare utilization and costs of health care for patients with poor-prognosis cancers enrolled in hospice vs similar patients without hospice care.

Design, Setting, and Participants Matched cohort study of patients in hospice and nonhospice care using a nationally representative 20% sample of Medicare fee-for-service beneficiaries who died in 2011. Patients with poor-prognosis cancers (eg, brain, pancreatic, metastatic malignancies) enrolled in hospice before death were matched to similar patients who died without hospice care.

Exposures Period between hospice enrollment and death for hospice beneficiaries, and the equivalent period of nonhospice care before death for matched nonhospice patients.

Main Outcomes and Measures Health care utilization including hospitalizations and procedures, place of death, cost trajectories before and after hospice start, and cumulative costs, all during the last year of life.

Results Among 86 851 patients with poor-prognosis cancers, median time from first poor-prognosis diagnosis to death was 13 months (interquartile range [IQR], 3-34), and 51 924 patients (60%) entered hospice before death. Matching yielded a cohort balanced on age, sex, region, time from poor-prognosis diagnosis to death, and baseline care utilization, with 18 165 patients in the hospice group and 18 165 in the nonhospice group. After matching, 11% of nonhospice and 1% of hospice beneficiaries who had cancer-directed therapy after exposure were excluded. Median hospice duration was 11 days. After exposure, nonhospice beneficiaries had significantly more hospitalizations (65% [95% CI, 64%-66%], vs hospice with 42% [95% CI, 42%-43%]; risk ratio, 1.5 [95% CI, 1.5-1.6]), intensive care (36% [95% CI, 35%-37%], vs hospice with 15% [95% CI, 14%-15%]; risk ratio, 2.4 [95% CI, 2.3-2.5]), and invasive procedures (51% [95% CI, 50%-52%], vs hospice with 27% [95% CI, 26%-27%]; risk ratio, 1.9 [95% CI, 1.9-2.0]), largely for acute conditions not directly related to cancer; and 74% (95% CI, 74%-75%) of nonhospice beneficiaries died in hospitals and nursing facilities compared with 14% (95% CI, 14%-15%) of hospice beneficiaries. Costs for hospice and nonhospice beneficiaries were not significantly different at baseline, but diverged after hospice start. Total costs over the last year of life were $71 517 (95% CI, $70 543-72 490) for nonhospice and $62 819 (95% CI, $62 082-63 557) for hospice, a statistically significant difference of $8697 (95% CI, $7560-$9835).

Conclusions and Relevance In this sample of Medicare fee-for-service beneficiaries with poor-prognosis cancer, those receiving hospice care vs not (control), had significantly lower rates of hospitalization, intensive care unit admission, and invasive procedures at the end of life, along with significantly lower total costs during the last year of life.

Introduction: Ensuring that patients receive care that is consistent with their goals and values is a critical component of high-quality care. This article describes the protocol for a cluster randomised controlled trial of a multicomponent, structured communication intervention. Methods and analysis Patients with advanced, incurable cancer and life expectancy of <12 months will participate together with their surrogate. Clinicians are enrolled and randomised either to usual care or the intervention. The Serious Illness Care Program is a multicomponent, structured communication intervention designed to identify patients, train clinicians to use a structured guide for advanced care planning discussion with patients, ‘trigger’ clinicians to have conversations, prepare patients and families for the conversation, and document outcomes of the discussion in a structured format in the electronic medical record. Clinician satisfaction with the intervention, confidence and attitudes will be assessed before and after the intervention. Self-report data will be collected from patients and surrogates approximately every 2 months up to 2 years or until the patient's death; patient medical records will be examined at the close of the study. Analyses will examine the impact of the intervention on the patient receipt of goal-concordant care, and peacefulness at the end of life. Secondary outcomes include patient anxiety, depression, quality of life, therapeutic alliance, quality of communication, and quality of dying and death. Key process measures include frequency, timing and quality of documented conversations. Ethics and dissemination This study was approved by the Dana-Farber Cancer Institute Institutional Review Board. Results will be reported in peer-reviewed publications and conference presentations. Trial registration number Protocol identifier NCT01786811; Pre-results.

This study evaluated if measures of psychological well-being, including coping style are associated with advance care planning (ACP). Data were from the HEMA-COMM study, a prospective observational study of physician-patient communication in patients with hematologic malignancies. ACP was defined as having a living will, having a health care proxy, discussing life support with family or friends, and discussing life support with a doctor or nurse. 293 patients participated: only 45 (15%) had all the elements of ACP, 215 (73%) had at least 1 element of ACP, while 33 (11%) did not engage in ACP. In multivariate analysis, specific coping styles but not other measures of psychosocial well being were associated with having written ACP. Verbal ACP was associated with patient-reported health and physician estimate of life expectancy. Our study suggests that tailoring ACP discussions to a patient’s coping style may increase engagement in ACP.

Purpose

Little is known about communication with patients suffering from hematologic malignancies, many of whom are seen by subspecialists in consultation at tertiary-care centers. These subspecialized consultations might provide the best examples of optimal physician–patient communication behaviors, given that these consultations tend to be lengthy, to occur between individuals who have not met before and may have no intention of an ongoing relationship, and which have a goal of providing treatment recommendations. The aim of this paper is to describe and quantify the content of the subspecialty consultation in regards to exchanging information and identify patient and provider characteristics associated with discussion elements.

Methods

Audio-recorded consultations between 236 patients and 40 hematologists were coded for recommended communication practices. Multilevel models for dichotomous outcomes were created to test associations between patient, physician and consultation characteristics and key discussion elements.

Results

Discussions about the purpose of the visit and patient’s knowledge about their disease were common. Other elements such as patient’s preference for his/her role in decision-making, preferences for information, or understanding of presented information were less common. Treatment recommendations were provided in 97% of the consultations and unambiguous presentations of prognosis occurred in 81% of the consultations. Unambiguous presentations of prognosis were associated with non-White patient race, lower educational status, greater number of questions asked, and specific physician provider.

Conclusion

Although some communication behaviors occur in most consultations, others are much less common and could help tailor the amount and type of information discussed. Approximately half of the patients are told unambiguous prognostic estimates for mortality or cure.

Context Talking about death can be difficult. Without evidence that end-of-life (EOL) discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern that EOL discussions may inflict psychological harm.

Objective To determine whether EOL discussions with physicians are associated with fewer aggressive interventions.

Design, Setting, Participants A United States multi-site, prospective, longitudinal cohort study of advanced cancer patients and their informal caregivers (n=332 dyads), September 2002-February 2008. Patients were followed from enrollment to death a median of 4.4 months later. Bereaved caregivers’ psychiatric illness and quality of life (QoL) was assessed a median 6.5 months later.

Main Outcome Measures The primary outcome were aggressive medical care (e.g., ventilation, resuscitation) and hospice in the final week of life. Secondary outcomes included patients’ mental health and caregivers’ bereavement adjustment.

Results 123 of 332 (37.0%) patients reported EOL discussions before baseline. EOL discussions were not associated with higher rates of Major Depressive Disorder (8.3% vs. 5.8; AOR 1.33, 95% CI 0.54-3.32), or more “worry” (6.5 vs. 7.0; p=0.19)). After propensity-score weighted adjustment, EOL discussions were associated with lower rates of ventilation (1.6% vs. 11.0%; AOR 0.26, 95% CI 0.08-0.83), resuscitation (0.8% vs. 6.7%; AOR 0.16, 95% CI 0.03-0.80), ICU admission (4.1 vs. 12.4%; AOR 0.35, 95% CI 0.14-0.90), and earlier hospice enrollment (65.6% vs. 44.5%; AOR 1.58, 95% CI 1.04-2.63). In adjusted analyses, more aggressive medical care was associated with worse patient QoL (6.4 vs. 4.6; F=3.60, p=0.01) and higher risk for Major Depressive Disorder in bereaved caregivers (AOR 3.37, 95% CI 1.12-10.13), while longer hospice stays were associated with better patient QoL (5.6 vs. 6.9; F=3.70, p=0.01). Better patient QoL was associated with better caregiver QoL at follow-up (β=0.20; p=0.001).

Conclusion EOL discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient QoL and worse bereavement adjustment.

BACKGROUND: Research suggests that patients' end-of-life (EOL) care is determined primarily by the medical resources available, and not by patient preferences. The authors examined whether patients' desire for life-extending therapy was associated with their EOL care. METHODS: Coping with Cancer is a multisite, prospective, longitudinal study of patients with advanced cancer. Three hundred one patients were interviewed at baseline and followed until death, a median of 4.5 months later. Multivariate analyses examined the influence of patients' preferences and treatment site on whether patients received intensive care or hospice services in the final week of life. RESULTS: Eighty-three of 301 patients (27.6%) with advanced cancer wanted life-extending therapy at baseline. Patients who understood that their disease was terminal or who reported having EOL discussions with their physicians were less likely to want life-extending care compared with others (23.4% vs 42.6% and 20.7% vs 44.4%, respectively; P≤.003). Patients who were treated at Yale Cancer Center received more intensive care (odds ratio [OR], 3.14; 95% confidence interval [CI], 1.16-8.47) and less hospice services (OR, 0.52; 95% CI, 0.29-0.92) compared with patients who were treated at Parkland Hospital. However, in multivariate analyses that controlled for confounding influences, patients who preferred life-extending care were more likely to receive intensive care (adjusted OR [AOR], 2.91; 95% CI, 1.09-7.72) and were less likely to receive hospice services (AOR, 0.45; 95% CI, 0.26-0.78). Treatment site was not identified as a significant predictor of EOL care. CONCLUSIONS: The treatment preferences of patients with advanced cancer may play a more important role in determining the intensity of medical care received at the EOL than previously recognized. Future research is needed to determine the mechanisms by which patients' preferences for care and treatment site interact to influence EOL care.