Abstract
Doyan K, Cloyes KG, Clayton MF, et al.: We're the eyes and the ears, but we don't have a voice: Perspectives of hospice aides. J Hosp Palliat Nurs 2018;20:47–54.
Hospice aides are integral to the delivery of home hospice care and play an essential role in the effective communication and collaboration of the hospice interdisciplinary team. Despite their critical role, little is known about hospice aides' perceptions of their role in providing hospice services. This qualitative study explored hospice aides' perspectives of their work; their relationships with patients, families, and interdisciplinary team members; and their contributions to end-of-life care. Two focus groups of hospice aides (N = 13) and 16 hours of observation of in-home caregiving were conducted. Focus group data were inductively and iteratively coded, and three themes were identified: (1) “We're the eyes and ears,” (2) “We're kept out of the loop,” and (3) “We have no voice.” Aides described themselves as frontline providers based on the close relationships they formed with patients and family members, yet felt under-recognized by members of the hospice team. Observational field notes were re-examined with themes to confirm convergence of qualitative and observational data. The authors conclude that better understanding of their role could enhance the integration of aides into patient- and family-centered team interactions, leading to both improved patient and family outcomes and retention and support of this critical component of the hospice workforce.
Dellon EP, Goggin J, Chen E, et al.: Defining palliative care in cystic fibrosis: A Delphi study. J Cystic Fibrosis 2018. [E-pub ahead of print]; DOI: doi.org/10.1016/j.jcf.2017.10.011
The goal of palliative care is to improve quality of life for people with serious illness. The authors attempted to create a cystic fibrosis (CF)-specific definition of palliative care. A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions. An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan.
Pedraza SL, Culp S, Knestrick M, et al.: Association of physician orders for life-sustaining treatment form use with end-of-life care quality metrics in patients with cancer. J Oncol Pract 2017;13:e881–e888.
Many patients with advanced cancer receive aggressive treatment near the end of life. The Physician Orders for Life-Sustaining Treatment (POLST) form is an innovation that converts patient preferences into medical orders. We compared the end-of-life care of patients with advanced cancer who had completed POLST forms with that of patients who had advance directives (ADs). The authors studied 2159 West Virginians with ADs and/or POLST forms in the West Virginia e-Directive Registry who died as a result of cancer between January 2011 and February 2016. Data from the Vital Registration Office (date, site, and cause of death) were merged with those from the registry (form type, completion date, and hospice admission). The primary outcome variables were out-of-hospital death (OHD) and hospice admission. Results demonstrated that the percentage of patients with OHD was 85.7% for patients with POLST forms compared with 72.0% for those with ADs (p < 0.001). The odds of OHD for patients with POLST forms were 2.33 times those of patients with ADs. The percentage of patients admitted to hospice was 49.9% for those with POLST forms compared with 27.0% for those with ADs (p < 0.001). The odds of being admitted to hospice for patients with POLST forms were 2.69 times those of patients with ADs. The authors conclude that advance care planning with completion of POLST forms compared with ADs in patients with advanced cancer was associated with two quality end-of-life care metrics: OHD and hospice admission. They suggest that their study indicates that goals-of-care discussions including POLST form completion may improve end-of-life care for patients with advanced cancer
Lutz K, Rowniak SR, Sandhu P.: A contemporary paradigm: Integrating spirituality in advance care planning J Relig Health 2017. [E-pub ahead of print]; DOI: doi.org/10.1007/s10943-017-0541-7
In the 25 years since advance care planning first drew the attention of the national healthcare and legal systems, gains in the rate of advance care directive completion have been negligible despite the effort of researchers, ethicists, and lawmakers. With the benefit of sophisticated healthcare technology, patients are living longer, but despite the benefits of increased longevity, it is widely acknowledged that enough has not been done to adequately address end-of-life care decisions at the crossroads between medical futility and quality of life. To arrive at a solution, researchers have focused on patient self-reflection, provider attitudes, health literacy, communication and the logistics of surrogacy, setting, payment, and documentation. However, a survey of the literature reveals one conspicuously absent theme. It is a phenomenon one would expect in the context of end-of-life discussion and decision making, that of spiritual inquiry. This article explores the history leading up and past approaches to advance care planning and then suggests the use of a theoretical model and a body of work concerning spiritual care as a new tack in the ongoing development of advance care planning.
Ahaddour C, Van den Branden S, Broeckaert B. “God is the giver and taker of life”: Muslim beliefs and attitudes regarding assisted suicide and euthanasia. AJOB Empir Bioeth 2018;9:1–11.
In the context of the Belgian debates on end-of-life care, the views of Muslims remain understudied. The aim of this article was twofold. First, to document the relationship between contemporary normative Muslim ideas on assisted suicide and voluntary euthanasia on the one hand and real-world views and attitudes of Muslims living in Belgium on the other hand. Second, to identify whether a shift is observable in the views and attitudes regarding active termination of life between first- and second-generation Muslims. The authors conclude that they have observed that when dealing with these bioethical issues, both first- and second-generation Muslims adopt a theological line of reasoning like the one that can be found in normative Islamic views. They also note that they have found an absolute rejection of every act that deliberately terminates life, based on the unconditional belief in an afterlife and in God's sovereign power over life and death.
Ewing G, Austin G, Jones D. Who cares for the carers at hospital discharge at the end of life? A qualitative study of current practice in discharge planning and the potential value of using The Carer Support Needs Assessment Tool (CSNAT) Approach. Palliat Med 2018. [E-pub ahead of print]; DOI: doi.org/10.1177/0269216318756259
Caregiver factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support caregivers at hospital discharge. The aim of this qualitative study was to explore whether and how family caregivers are currently supported during patient discharge at end of life and to assess perceived benefits, acceptability, and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support caregivers. The setting of the study was three National Health Service Trusts in England, in which focus groups with 40 hospital and community-based practitioners and 22 caregiver interviews about experiences of caregiver support during hospital discharge and views of The CSNAT Approach were completed. Two workshops brought together 14 practitioners and 5 caregivers to discuss implementation issues. Results demonstrated that current barriers to supporting caregivers at hospital discharge were an organizational focus on patients' needs, what practitioners perceived as caregivers' often “unrealistic expectations” of end-of-life caregiving at home and lack of awareness of patients' end-of-life situation. The CSNAT Approach was viewed as enabling caregiver support and addressing difficulties of discussing the realities of supporting someone at home toward end of life. Implementation in hospital required organizational considerations of practitioner workload and training. To enhance caregiver support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a caregiver-held record to manage the transition. The authors conclude that their study identifies a novel intervention, which expands the focus of discharge planning to include assessment of caregivers' support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital.