Abstract
Elie D, Marino A, Torres-Platas SG, et al. End-of-life care preferences in patients with severe and persistent mental illness and chronic medical conditions: A comparative cross-sectional study. Am J Geriatr Psychiatry 2017. [E-pub ahead of print]; DOI: https://dx-doi-org.web.bisu.edu.cn/10.1016/j.jagp.2017.09.018
Physicians rarely engage severe and persistent mental illness (SPMI) patients in end-of-life care discussion despite an increased risk of debilitating medical illnesses and mortality. Access to quality palliative care and medical assistance in dying (MAID) has become a priority in Canada and many jurisdictions. In this hospital-based, comparative cross-sectional study, the authors compared SPMI and chronic medically ill (CMI) patients' end-of-life care preferences and comfort level with end-of-life care discussion, and identified potential predictors of interest in MAID. The authors recruited 106 SPMI and 95 CMI patients at the Jewish General Hospital, Canada. Patients aged ≥40 years, without severe cognitive impairment, able to communicate in English or French and provide written informed consent, were included. Measurements included attitudes toward pain management, palliative sedation, MAID, and artificial life support, and were collected with the Healthcare Preferences Questionnaire. Results demonstrated that SPMI was not correlated to any end-of-life care intervention, except for MAID wherein SPMI patients were less likely to support its use (p = 0.03). Religiosity was also correlated with interest in MAID (p < 0.001). Patients in both groups were comfortable talking about end-of-life care. The authors conclude that SPMI patients are able to voice their end-of-life care preferences and, contrary to some fears, do not want MAID more than CMI patients.
Vater LB, Rebesco G, Schenker Y, et al. Palliative care content on cancer center websites. Support Care Cancer 2017; [e-pub ahead of print]; DOI: doi.org/10.1007/s00520-017-3922-2
Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. However, cancer centers may miss opportunities to provide palliative care information online. In this study, the authors described the palliative care content on cancer center websites. The authors conducted a systematic content analysis of 62 National Cancer Institute (NCI)-designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care web pages, the authors assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Results demonstrated that NCI-designated cancer center home pages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. The authors conclude that cancer center home pages rarely mention palliative care services. Although the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.
Barrett T. Cardiac palliative medicine. Curr Heart Fail Reps 2017;14:428–433.
Heart failure is an illness with high morbidity and mortality that affects 5.7 million Americans. As advanced heart therapies become more prevalent, care for patients and families is becoming more complex. The American Heart Association has released a policy statement recommending continuous, high-quality access to palliative care for all patients with heart failure, and the Center for Medicare Services requires palliative care involvement in mechanical circulatory support teams. The National Quality Forum developed eight domains of palliative care that are required for high-quality delivery of comprehensive palliative care. This article assesses each domain and how it pertains to evolving care of patients with advanced heart failure. The author concludes that leadership from heart failure teams should review the domains of palliative care to ensure they are improving primary palliative care skills as well as identifying areas needed to improve funding so that patients have access to comprehensive specialty level palliative care.
Rost M, Wangamo T, Niggli F, et al. Parents' and physicians' perceptions of children's participation in decision-making in paediatric oncology: A quantitative study. J Bioethical Inquiry 2017; [E-pub ahead of print]; DOI: doi.org/10.1007/s11673-017-9813-x
The goal of this study was to present how shared decision making in pediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Paediatric Oncology Group centers participated in this prospective study. The sample comprised a parent and physician of the minor patient (<18 years). Surveys were statistically analyzed by comparing physicians' and parents' perspectives and by evaluating factors associated with children's actual involvement. Perspectives of 91 parents and 20 physicians were obtained for 151 children. Results demonstrated that for six aspects of information provision examined, parents' and physicians' perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient's age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they wanted. The authors conclude that physicians should take measures to ensure that provided information is understood correctly, and they should work toward creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making.
Asplund K, Lundstro S, Stegmayr B. End of life after stroke: A nationwide study of 42,502 deaths occurring within a year after stroke. Eur Stroke J 2017. [E-pub ahead of print]; DOI: 10.1177/2396987317736202
In the scientific literature, there is very limited empirical information on end-of-life issues after stroke. This study describes the circumstances surrounding deaths that occur within a year after a stroke. Datasets from three nationwide Swedish registers (on stroke, palliative care, and cause of death) were linked. Basic information was available for 42,502 unselected cases of death that occurred within a year after a stroke and more detailed information was available for 16,408 deaths. Odds ratios for characteristics of end-of-life care were calculated by logistic regression. Results demonstrated that in the late phase after stroke (three months to one year), 46% of patients died in a nursing home, whereas 37% of patients died in a hospital after readmission, and 10% of patients died at home. Eleven percent of deaths were reported as being unexpected. A next of kin was present at 49% of deaths. The frequency of unattended deaths (neither next of kin nor staff were present at the time of death) ranged from 5% at home with specialized home care to 25% in hospitals. The authors suggest that theirs is the largest study published on end-of-life issues after stroke; however, major differences between countries in healthcare, community services, family structure, and culture may limit direct extrapolation of results to other settings. They also note that there is considerable discordance between presumed “good death” late after stroke (dying at home surrounded by family members) and the actual circumstances at the end of life.
Roland KP, Chappell NL. Caregiver experiences across three neurodegenerative diseases: Alzheimer's, Parkinson's, and Parkinson's with dementia. J Aging Health 2017; [E-pub ahead of print]; DOI: doi.org/10.1177/0898264317729980
This article asked whether distinct caregiver experiences of Alzheimer's disease (AD), Parkinson's disease (PD), and Parkinson's disease with dementia (PDD) spouses are accounted for by disease diagnosis or by a unique combination of symptoms, demands, support, and quality of life (QoL) across disease groups. One hundred five live-in spouse caregivers (71.4 ± 7 years) were surveyed for persons with AD (39%), PD (41%), and PDD (20%). A hierarchical cluster analysis organized caregiver across disease diagnosis into clusters with similar symptom presentation, care demands, support, and QoL. Results demonstrated that four clusters cut across disease diagnosis. “Succeeding” cared for mild symptoms and had emotional support. “Coping” managed moderate stressors and utilized formal supports. “Getting by with support” and “Struggling” had the greatest stressors; available emotional support influenced whether burden/depression was moderate or severe. The results remained the same when diagnostic category was added to the cluster analysis. The authors conclude that their study supports going beyond disease diagnosis when examining caregiver experiences.