Abstract
Kirkman AO, Hartsock JA, Torke AM: How The Fault in Our Stars illuminates four themes of the adolescent end of life narrative. Med Humanities 2019;45:240–246.
Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end-of-life (EOL) care. Understanding and documenting those preferences can be enhanced by practicing narrative medicine. This article aims to identify a new form of narrative, the Adolescent EOL Narrative, and recognize four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent's preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.
O'Malley K, Blakley L, Ramos K, et al.: Mental healthcare and palliative care: Barriers. BMJ Support Palliat Care; published online January 13, 2020, DOI: 10.1136/bmjspcare-2019-001986
Psychological symptoms are common among palliative care patients with advanced illness, and their effect on quality of life can be as significant as physical illness. The demand to address these issues in palliative care is evident, yet barriers exist to adequately meet patients' psychological needs. This article provides an overview of mental health issues encountered in palliative care, highlights the ways psychologists and psychiatrists care for these issues, describes current approaches to mental health services in palliative care, and reviews barriers and facilitators to psychology and psychiatry services in palliative care, along with recommendations to overcome barriers.
Tate CE, Venechuk G, Brereton EJ, et al.: “It's Like a Death Sentence but It Really Isn't.” What patients and families want to know about hospice care when making end-of-life decisions. Am J Hosp Palliat Med 2019. [E-pub ahead of print]; DOI: 10.1177/1049909119897259
Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during EOL discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision making. To attempt to understand the decisional needs of patients and families making decisions about hospice care, the authors conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. They identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. Results demonstrated that 4 patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care? (2) Why might hospice care be helpful? (3) Where is hospice care provided? and (4) How is hospice care paid for? The authors conclude that hospice may not be the right treatment choice for all with terminal illness. They note that their study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.
Yefimova M, Aslakson RA, Boothroyd D, et al.: Palliative care and end-of-life outcomes following high-risk surgery. JAMA Surg 2020. [E-pub ahead of print]; DOI:10.1001/jamasurg.2019.5083
Palliative care has the potential to improve care for patients and families undergoing high-risk surgery. To characterize the use of perioperative palliative care and its association with family-reported EOL experiences of patients who died within 90 days of a high-risk surgical operation, this secondary analysis of administrative data from a retrospective cross-sectional patient cohort was conducted in the Department of Veterans Affairs (VA) Healthcare System. Patients who underwent any of 227 high-risk operations between January 1, 2012 and December 31, 2015 were included. The outcomes were family-reported ratings of overall care, communication, and support in the patient's last month of life. The VA surveyed all families of inpatient decedents using the Bereaved Family Survey (BFS), a valid and reliable tool that measures patient and family-centered EOL outcomes. Results demonstrated that a total of 95,204 patients underwent high-risk operations in 129 inpatient VA Medical Centers. Most patients were ≥65 years (69,278 [72.8%]), and the most common procedures were cardiothoracic (31,157 [32.7%]) or vascular (23,517 [24.7%]). The 90-day mortality rate was 6.0% (5740 patients) and varied by surgical subspecialty (ranging from 278 of 7226 [3.8%] in urologic surgery to 875 of 6223 patients [14.1%] in neurosurgery). A multivariate mixed model revealed that families of decedents who received palliative care were 47% more likely to rate overall care in the last month of life as excellent than those who did not after adjusting for patient's characteristics, surgical subspecialty of the high-risk operation, and survey nonresponse. Similarly, families of decedents who received palliative care were more likely to rate EOL communication and support components of medical care as excellent. Of the entire cohort, 3374 patients (3.75%) had a palliative care consultation, and 770 patients (0.8%) received it before surgery. Of all decedents, 1632 (29.9%) had a palliative care consultation, with 319 (5.6%) receiving it before surgery. The authors conclude that receipt of a palliative consultation was associated with better ratings of overall EOL care, communication, and support, as reported by families of patients who died within 90 days of high-risk surgery. Yet only one-third of decedents were exposed to palliative care. Thus, they suggest that expanding integration of perioperative palliative care may benefit patients undergoing high-risk operations and their families.
Carpenter JG, Ersek M, Nelson F, et al.: A national study of end-of-life care among older veterans with hearing and vision loss. J Am Geriatr Soc 2019. [E-pub ahead of print]; DOI:10.1111/jgs.16298
Hearing and visual sensory loss is prevalent among older adults and may impact the quality of health care they receive. Few studies have examined sensory loss and EOL care quality. The authors' aim of study was to describe hearing and vision loss and their associations with the quality of EOL care and family perception of care in the last 30 days of life among a national sample of veteran decedents. The study consisted of a retrospective medical record review and BFS. One hundred forty-five VA Medical Centers participated. Medical record review of all veterans who died in an inpatient VA Medical Center between October 2012 and September 2017 (N = 96,424) were completed. Survey results included 42,428 individuals. Three indicators of high-quality EOL care were measured: palliative consultation in the last 90 days of life, death in a nonacute setting, and contact with a chaplain. The BFS reflects a global evaluation of quality of EOL care; pain and post-traumatic stress disorder management; and three subscales characterizing perceptions regarding communication, emotional and spiritual support, and information about death benefits in the last month of life. Results demonstrated that in adjusted models, EOL care quality indicators and BFS outcomes for veterans with hearing loss were similar to those for veterans without hearing loss; however, the authors noted slightly lower scores for pain management and less satisfaction with communication. Veterans with vision loss were less likely to have received a palliative care consult or contact with a chaplain than those without vision loss. Although BFS respondents for veterans with vision loss were less likely than respondents for veterans without vision loss to report excellent overall care and satisfaction with emotional support, other outcomes did not differ. The authors conclude that in general, the VA is meeting the EOL care needs of veterans with hearing and vision loss through palliative care practices.
Pivodic L, Smets T, Gambassi G, et al.: Physical restraining of nursing home residents in the last week of life: An epidemiological study in six European countries. Int J Nurs Studies 2019. [E-pub ahead of print]; DOI:10.1016/j.ijnurstu.2019.103511
EOL care in nursing homes holds several risk factors for the use of physical restraints on residents, a practice shown to be neither safe nor effective. The objectives of this epidemiological survey study were to determine the frequency of physical limb and/or trunk restraint use in the last week of life of nursing home residents in six European countries and its association with country, resident, and nursing home characteristics. The setting for the study was a proportionally stratified random sample of nursing homes in Belgium (BE), England (ENG), Finland (FI), Italy (IT), the Netherlands (NL), and Poland (PL). Participants in the study were nursing home staff. Results demonstrated that in 322 nursing homes, staff returned questionnaires regarding 1384 deceased residents (response rate 81%). Limb and/or trunk restraints were used “daily” in the last week of life in 8% (BE), 1% (ENG), 4% (FI), 12% (IT), 0% (NL), and 0.4% (PL) of residents; and “less frequently than daily” in 4% (BE), 0% (ENG), 0.4% (FI), 6% (IT), 0% (NL), and 3.5% (PL) of residents. Restraint use was associated with country (p = 0.020) and inversely associated with residents' age (p = 0.017; odds ratio 0.96, 95% confidence interval 0.93–0.99). Restraint use was not significantly associated with resident's gender, dementia, functional status, staffing level, or the level of dependency of residents within the nursing home. The authors conclude that in all but one of the six countries studied, staff reported that nursing home residents were restrained through limb and/or trunk restraints in the last week of life. The proportion of restrained residents was highest in Italy and Belgium. However, organizational and resident characteristics may not be relevant predictors of restraint use at the EOL in this setting. The authors suggest that national policy that explicitly discourages physical restraints in nursing home care and suggests alternative practices may be an important component of strategies to prevent their use.