Abstract
Kolva E, Rosenfeld B, Saracino R: Assessing the decision making capacity of terminally ill patients with cancer. Am J Geriatr Psychiatry 2017 [Epub ahead of print]; DOI: https://dx-doi-org.web.bisu.edu.cn/10.1016/j.jagp.2017.11.012.
Despite the clinical, ethical, and legal magnitude of end-of-life (EoL) decision making, the capacity of terminally ill patients to make the medical decisions they often face is largely unknown. In practice, clinicians are responsible for determining when their patients are no longer competent to make treatment decisions, yet the accuracy of these assessments is unclear. The purpose of this study was to explore decision-making capacity and its assessment in terminally ill cancer patients. Fifty-five patients with advanced cancer receiving inpatient palliative care (PC) and 50 healthy adults were administered the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) to evaluate decision-making capacity with regard to the four most commonly used legal standards: choice, understanding, appreciation, and reasoning. Participants made a hypothetical treatment decision about whether to accept artificial nutrition and hydration for treatment of cachexia. Participants' physicians independently rated their decision-making capacity. Results demonstrated that terminally ill participants were significantly more impaired than healthy adults on all MacCAT-T subscales. Most terminally ill participants were able to express a treatment choice (85.7%), but impairment was common on the understanding (44.2%), appreciation (49.0%), and reasoning (85.4%) subscales. Agreement between physician-rated capacity and performance on the MacCAT-T subscales was poor. The authors conclude that the use of MacCAT-T revealed high rates of decisional impairment in terminally ill participants, and that participants' physicians infrequently detected impairment identified by MacCAT-T. The authors also state that findings from this study reinforce the need for establishing comprehensive advance directives for patients with advanced cancer.
Stuart RB, Thielke S: Protocol for the assessment of patient capacity to make end-of-life treatment decisions. J Am Med Directors Assoc 2017 [Epub ahead of print]; DOI: https://dx-doi-org.web.bisu.edu.cn/10.1016/j.jamda.2017.11.011.
Patients' right to decide what happens to their bodies, especially around the EoL, is enshrined in legislation across the world, but questions often arise about whether a patient is capable of meaningful participation in such decisions. Because of uncertainties about capacity, care providers and administrative agencies often must decide whether to honor, or even to elicit, patients' wishes. General decision-making capacity has been well studied, but few clear protocols exist for ascertaining capacity at the EoL. Without clear guidelines about how to assess capacity, medical staff may ignore assessment and operate from invalid assumptions. In the interests of protecting patients' agency, the authors propose a straightforward protocol for assessing capacity to make decisions about EoL interventions.
Johnson SB, Butow PN, Kerridge I, Tattersall MHN: What do patients with cancer and their families value most at the end of life? A critical analysis of advance care planning. Int J Palliat Nurs 2017;23:596–604.
Advance care planning (ACP) is defined in a variety of ways, although it is widely understood as a process undertaken by patients, when they have capacity, to define and communicate their treatment preferences for future care. Few studies have explored the meaning and importance patients place on their ability to participate in directing their medical care. This study aimed to explore how cancer patients and their family members value autonomy at the EoL and understand how this may impact on the way they develop and act on EoL decisions and planning. Data were collected through in-depth semistructured interviews with patients and family members of people with cancer. Participants were recruited from metropolitan cancer centers in Sydney, Australia. Interviews were analyzed using thematic analysis. Results from interviews of 11 participants (5 patients with cancer and 6 family members) were organized into four themes: “the threat of death and cancer”; “patients seek trust and safety at the end of life”; “doctors are human and the healthcare system has limitations”; and “the role of ACP.” Participants experienced cancer and death as a “threat,” to self and others and as something “uncontrollable.” ACP was seen to have the potential to enhance EoL care by contributing to decreasing uncertainty, enhancing comfort, helping to achieve “the small things,” and in helping the family “know what to do.” However, participants were, in general, distrustful of documentation and cognizant of uncertainty around medical outcomes and the legal limitations of their capacity to influence care. The authors conclude that their findings suggest that models of ACP that are constructed around patients' “rights” to determine what happens to their bodies may do little to enhance the quality of EoL care, as patients value veracity, trust, and comfort at the EoL more than autonomy. They also state that quality EoL care should focus on paying increased attention to the relational and social aspects of care.
Munoz-Blanco S, Raisanen JC, Donohue PK, Boss RD: Enhancing pediatric palliative care for Latino children and their families: A review of the literature and recommendations for research and practice in the United States. Children (Basel) 2018;5:2. DOI: 10.3390/children5010002.
As the demand for pediatric PC increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. The authors conducted a narrative review of literature related to PC for Latino children and their families in the United States. Results demonstrated that in the United States, Latinos face multiple barriers that affect their receipt of PC, including poverty, lack of access to health insurance, language barriers, discrimination, and cultural differences. Pediatric PC research and clinical initiatives that target the needs of Latino families are sparse, underfunded, but essential. The authors conclude that education of providers on Latino cultural values is necessary, and that advocacy efforts with a focus on equitable care and policy reform are essential to improving the health of this vulnerable population.
Miyashita M, Aoyama M, Yoshida S, et al. The distress and benefit to bereaved family members of participating in a post-bereavement survey. Jpn J Clin Oncol 2017 [Epub ahead of print]; DOI: https://doi.org/10.1093/jjco/hyx177.
The authors note that few studies have simultaneously collected quantitative data regarding the positive and negative effects of participating in postbereavement surveys. In this study, the authors conducted a cross-sectional postal questionnaire survey in October 2013. Potential participants were caregivers for family members who had died in four inpatient PC units, two home hospices, and a general hospital. We collected opinions regarding the distress and benefit of completing a postbereavement survey. After collecting data, we provided feedback to participating institutions in the form of study results and deidentified open-ended comments. Results demonstrated that of 692 potential participants, 596 were sent questionnaires: 393 returned questionnaires were valid and analyzed. Of the respondents, 62% reported being distressed by completing the questionnaire. Female participants and those who were mentally ill during the care-giving period reported more distress. However, 86% of respondents reported they found the questionnaire beneficial. Better quality of EoL care and respondent depression were associated with more benefit. Major benefits were contributing to the development of EoL care as a family (63%), expressing gratitude to the hospital and medical staff (60%), and looking back and reflecting on the EoL period (40%). Feeling benefit was not correlated with feeling distressed (p = −0.02). The authors conclude that in this large-scale study on the effects of postbereavement surveys in Japan, many bereaved family members reported that completing the survey was beneficial. They also suggest that in addition to possibly having feelings of distress, postbereavement surveys might also be beneficial to EoL care facilities.