Abstract
Harrison KL, Dzena E, Ritchie CS, et al. Addressing palliative care clinician burnout in organizations: A workforce necessity, an ethical imperative. J Pain Symptom Manage 2017;53:1091–1096.
Clinician burnout reduces the capacity for providers and health systems to deliver timely, high quality, patient-centered care and increases the risk that clinicians will leave practice. This is especially problematic in hospice and palliative care: patients are often frail, elderly, vulnerable, and complex; access to care is often outstripped by need; and demand for clinical experts will increase as palliative care further integrates into usual care. Efforts to mitigate and prevent burnout currently focus on individual clinicians. However, analysis of the problem of burnout should be expanded to include both individual- and systems-level factors as well as solutions; comprehensive interventions must address both. As a society, we hold organizations responsible for acting ethically, especially when it relates to deployment and protection of valuable and constrained resources. We should similarly hold organizations responsible for being ethical stewards of the resource of highly trained and talented clinicians through comprehensive programs to address burnout.
Alvariza A, Lovgren M, Bylund-Grenklo T, et al. How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals—A nationwide survey. J Palliat Support Care 2017;15:313–319.
The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. This study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer. This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13–16 years of age within the previous 6 to 9 years, 622 participated in the survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals. Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent; and (4) to receive support tailored to the individual teenager's needs. The authors conclude that this nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.
Scheunemann L, Cunningham T, Arnold R, et al. How clinicians discuss critically ill patients' preferences and values with surrogates: An empirical analysis. Crit Care Med 2017;43:757–764.
Although shared decision making requires clinicians to discuss the patient's values and preferences, little is known about the extent to which this occurs with surrogates in intensive care units (ICUs). The authors sought to assess whether and how clinicians talk with surrogates about incapacitated patients' preferences and values. This was a prospective, cross-sectional study in five ICUs of two hospitals: 54 physicians and 159 surrogates for 71 patients. The authors audio-recorded 71 conferences in which clinicians and surrogates discussed life-sustaining treatment decisions for an incapacitated patient near the end of life. Two coders independently coded each instance in which clinicians or surrogates discussed the patient's previously expressed treatment preferences or values. They sub-coded for values that are commonly important to patients near the end of life. They also coded treatment recommendations by clinicians that incorporated the patient's preferences or values. Results demonstrated that in 30% of conferences, there was no discussion about the patient's previously expressed preferences or values. In 37%, clinicians and surrogates discussed both the patient's treatment preferences and values. In the remaining 33%, clinicians and surrogates discussed either the patient's treatment preferences or values, but not both. In more than 88% of conferences, there was no conversation about the patient's values regarding autonomy and independence, emotional well-being and relationships, physical function, cognitive function, or spirituality. On average, 3.8% of words spoken pertained to patient preferences or values. The authors conclude that in roughly one-third of ICU family conferences for patients at high risk of death, neither clinicians nor surrogates discussed patients' preferences or values about end-of-life decision making. In <12% of conferences did participants address values of high importance to most patients, such as cognitive and physical function. The authors suggest that interventions are needed to ensure patients' values and preferences are elicited and integrated into end-of-life decisions in ICUs.
Gallagher CM, Weber E, Rathi N. Reframing medical appropriateness: A case study concerning the use of life-sustaining technologies for a patient with profoundly diminished quality of life. Narrat Inq Bioeth 2017;7:87–95.
This case study considers the clinical ethics issues of medical appropriateness and quality of life for patients who are critically ill. The case involves a terminally ill cancer patient with a profoundly diminished quality of life and an extremely poor prognosis; his spouse desires to bring him home, where she will arrange to keep him alive for as long as possible through life-sustaining interventions. The analysis engages with the complicated notion of medical appropriateness, both in general and as it pertains to life-sustaining interventions in a critical care setting, and considers the ethical implications of the various ways in which one might understand this concept. It also addresses the significance of quality-of-life determinations, emphasizing the role of individualized values in determining the importance of quality of life for clinical decision making. The discussion concludes with a description of the two strategies employed by the ethics team in helping to alleviate the medical team's concerns about this case.
Corr CA. Let's stop “staging” persons who are coping with loss. Illn Crisis Loss 2017;23:226–241.
This article offers a critical analysis of Elisabeth Kübler-Ross and David Kessler's On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss. The goal is to delineate the strengths and limitations of the book's ostensible framework. Although the five stages of grief are described in Chapter 1, they play little role thereafter. Furthermore, readers are told these stages are neither universal nor linear. The author concludes that it would be desirable to stop staging persons who are coping with loss or at least be extremely cautious in using this stage-based model in appreciating their unique journeys.
Weaver MS, Heinze KE, Bell CJ, et al. Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliat Med 2017;30:212–223.
Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate. The aim of this study was to identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families, and to analyze barriers to implementation and enabling factors. Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and nonrandomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report. Results demonstrated that integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary articles revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision making; and overall care quality. The authors conclude that the study team coordinated landmark psychosocial palliative care articles into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings.