Abstract
Rosenberg AR, Wolfe J, Wiener L, et al.: Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: A review. JAMA Peds 2016 [Epub ahead of print]; DOI: 10.1001/jamapediatrics.2016.2142.
For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. Although clinicians should respect and help to facilitate adolescents' emerging autonomy, they often must also work with parents' wishes to protect patients from the emotional distress of hearing bad news. The authors reviewed the ethical justifications for and against truth telling, and considered the published ethical and practice guidance, as well as the perspectives of patients, parents, and clinicians involved in these cases. They also explored particular challenges with respect to the cultural context, timing, and content of conversations at the end of adolescents' lives. In most cases, clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. Although truth telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. The authors suggest some “phrases that help” when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members. They conclude that the pediatrician's opportunities to engage in difficult conversations about poor prognosis may be rare, but such conversations can be crucial. These discussions affect how patients live at the end of their lives, how they die, and how their families go on. Improved understanding of basic principles of communication as well as augmented understanding of patient, family, and clinician perspectives may better enable pediatricians to navigate these important conversations.
Meier EA, Gallegos JV, Thomas LPM, et al.: Defining a good death (successful dying): Literature review and a call for research and public dialogue. Am J Geriatr Psychiatry 2016; [Epub ahead of print]; DOI: 10.1016/j.jagp.2016.01.135.
There is little agreement about what constitutes a good death or successful dying. The authors conducted a literature search for published, English language, peer-reviewed reports of qualitative and quantitative studies that provided a definition of good death. Stakeholders in these articles included patients, prebereaved and bereaved family members, and healthcare providers (HCPs). Definitions were categorized into core themes and subthemes, and the frequency of each theme was determined by stakeholder (patients, family, and HCPs) perspectives. Thirty-six studies met eligibility criteria, with 50% of patient perspective articles including individuals more than age 60 years. The authors identified 11 core themes of good death: preferences for a specific dying process, pain-free status, religiosity/spirituality, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with HCP, and other. The top three themes across all stakeholder groups were preferences for dying process (94% of reports), pain-free status (81%), and emotional well-being (64%). However, some discrepancies among the respondent groups were noted in the core themes: Family perspectives included life completion (80%), quality of life (70%), dignity (70%), and presence of family (70%) more frequently than did patient perspectives regarding those items (35%–55% each). In contrast, religiosity/spirituality was reported somewhat more often in patient perspectives (65%) than in family perspectives (50%). Taking into account the limitations of the literature, further research is needed on the impact of divergent perspectives on end-of-life care. Dialogues among the stakeholders for each individual must occur to ensure a good death from the most critical viewpoint—the patient's.
Martin RS, Hayes B, Gregorevic K, Lim WK: The effects of advance care planning interventions on nursing home residents: A systematic review. JAMDA 2016;17:284–293.
Advance care planning (ACP) encompasses a process by which people may express and record their values and preferences for care and treatment should they lose the capacity to communicate in the future. The authors suggest that the effects that ACP can have on the nursing home population are distinct from others and sought to gain insight into the outcomes of relevant studies on the topic. This systematic review identifies the effects of ACP interventions on nursing home residents. A comprehensive literature search was conducted using the following four electronic databases, Embase, MEDLINE, PsychINFO, and CINAHL, with no limits on year or language. Gray literature search of relevant journals was also performed as was reviewing of the reference lists of all included articles. Inclusion criteria were randomized controlled trials, controlled trials, pre/poststudy design trials, and prospective studies examining the effects of ACP on nursing home residents. A detailed narrative synthesis was compiled as the heterogeneous nature of the interventions and results precluded meta-analysis. Results demonstrated that the initial search yielded 4654 articles. Thirteen studies fitted inclusion criteria for analysis. The ACP interventions included (1) five studies evaluating educational programs, (2) five studies introducing or evaluating a new ACP form, (3) two studies introducing an ACP program with a palliative care initiative, and (4) one study observing the effect of do not resuscitate orders on medical treatments for respiratory infections. A range of effects of ACP was demonstrated in the study populations. Hospitalization was the most frequent outcome measure used across the included studies. Analysis found that in the nursing home population, ACP decreased hospitalization rates by 9%–26%. Of note, in the two studies that included mortality, the decrease in hospitalization was not associated with increased mortality. Place of death is another important effect of ACP. Analysis found significant increases in the number of residents dying in their nursing home by 29%–40%. Medical treatments being consistent with ones' wishes were increased with ACP although not to 100% compliance. Two studies showed a decrease in overall health costs. One study found an increase in community palliative care use but not inpatient hospice referrals. The authors conclude that ACP has beneficial effects on the nursing home population. The types of ACP interventions vary, and it is difficult to identify superiority in effectiveness of one intervention over another. Outcome measures also varied considerably between studies, although hospitalization, place of death, and actions being consistent with resident's wishes were by far the most common. As very few studies with high-quality methodology have been undertaken in the area with a significant lack of randomized controlled trials, the authors recommend that more robust studies, especially randomized controlled trials, are required to support the findings.
Lewis E, Cardona-Morrell M, Ong KY, et al.: Evidence still insufficient that advance care documentation leads to engagement of healthcare professionals in end-of-life discussions: A systematic review. Palliat Med 2016;30:807–824.
Administration of nonbeneficial life-sustaining treatments in terminal elderly patients still occurs because of lack of knowledge of patient's wishes or delayed physician–family communications on preference. The aim of this systematic review was to determine whether advance care documentation encourages healthcare professional's timely engagement in end-of-life discussions. The data sources for the review were Embase, MEDLINE, EBM Reviews, PsycINFO, CINAHL, and Cochrane Library and manual searches of reference lists from January 2000 to April 2015. Results demonstrated that a total of 24 eligible articles from 10 countries including 23,914 subjects met the inclusion criteria, mostly using qualitative or mixed methods, with the exception of two cohort studies. The influence of advance care documentation on initiation of end-of-life discussions was predominantly based on perceptions, attitudes, beliefs, and personal experience rather than on standard replicable measures of effectiveness in triggering the discussion. Although health professionals reported positive perceptions of the use of advance care documentations (18/24 studies), actual evidence of their engagement in end-of-life discussions or confidence gained from accessing previously formulated wishes in advance care documentations was not generally available. The authors conclude that perceived effectiveness of advance care documentation in encouraging end-of-life discussions appears to be high but is mostly derived from low-level evidence studies. This may indicate a willingness and openness of patients, surrogates, and staff to perceive advance directives as an instrument to improve communication, rather than actual evidence of timeliness or effectiveness from suitably designed studies. The assumption that advance care documentations will lead to higher physicians' confidence or engagement in communicating with patients/families could not be objectively demonstrated in this review.
Spranzi M, Fournier V: The near-failure of advance directives: Why they should not be abandoned altogether, but their role radically reconsidered. Med Health Care Philos 2016;19:563–568.
Advance directives (ADs) have been hailed for two decades as the best way to safeguard patients' autonomy when they are totally or partially incompetent. In many national contexts, they are written into law and are mostly associated with end-of-life decisions. Although advocates and critics of ADs exchange relevant empirical and theoretical arguments, the debate is inconclusive. The authors argue that this is so for good reasons: the ADs project is fraught with tensions, and this is the reason why they are both important and deeply problematic. The authors outline six such tensions, and conclude with some positive suggestions about how to better promote patients' autonomy in end-of-life decision. They argue that ADs should continue to be an option, but they cannot be the panacea that they are expected to be.
Blackler L: Compromised autonomy: When families pressure patients to change their wishes. J Hospice Palliat Nurs 2016;18:184–191.
Living with a life-threatening illness is extraordinarily challenging. This challenge intensifies when patients struggle to weigh personal and familial interests when facing difficult medical decisions. When patients are unduly pressured by their families to make medical decisions that are not in line with previously held values, beliefs, or perspectives, autonomy is compromised. A case example, based on a clinical ethics consultation, is used to highlight the complexities of compromised autonomy secondary to family coercion and manipulation at the end of life. Decision making in the context of family involvement and relational autonomy is explored along with effects of caregiver stressors, patient/family disagreements, and the nuances of substituted judgment. The article closes with a discussion of universal strategies for best working with and advocating for patients who are experiencing compromised autonomy.