Abstract
Levine DR, Mandrell BN, Sykes A, et al.: Patients' and parents' needs, attitudes, and perceptions about early palliative care integration in pediatric oncology. JAMA Oncol 2017 [Epub ahead of print]; DOI: 10.1001/jamaoncol.2017.0368.
Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory. The objective of this study was to determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient–parent pairs. The authors note that novel but pretested survey tools were administered to 129 patient–parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncological condition one month to one year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, of whom 258 were enrolled in the study (92.1% positive response rate). Results demonstrated that of the 129 patients in the dyads, 68 were boys and 61 girls; of the 129 parents, 15 were men and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those reporting suffering indicated substantial suffering severity from specific symptoms (i.e., a great deal or a lot), including nausea 52.3% (57 of 109), loss of appetite 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%]), respectively. Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within one response category. Significant differences in patient–parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs. 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (p < 0.001). The authors conclude that pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.
Cacciatore J, Thieleman K, Lieber AS, Blood C, Goldman R: The long road to farewell. The needs of families with dying children. Omega. J Death Dying 2017; [Epub ahead of print]; DOI: 10.1177/0030222817697418.
Families of dying children are profoundly impacted by numerous interactions with healthcare providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with healthcare providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with healthcare providers during a child's terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.
Sanders S, Stensland M, Juraco K: Agency behind bars: Advance care planning with aging and dying offenders. Death Stud 2017; [Epub ahead of print]; DOI: https://dx-doi-org.web.bisu.edu.cn/10.1080/07481187.2017.1303552.
Aging and terminally ill individuals in U.S. prisons are increasing, making critical the need for appropriate end-of-life (EOL) care and advance care planning (ACP). Applying Bandura's Agentic perspective, the authors examined 20 aging/dying offenders' EOL preferences and ACP. Findings included six themes: Decisions in the shadow of the past, what works best for me, feeling blessed, what is really going on, can anyone be trusted, and turning agency over to someone else. This study provides critical information that will assist professionals who work with dying offenders, as it presents a vivid illustration of their dying process.
Courtwright AM, Abrams J, Robinson EM: The role of a hospital ethics consultation service in decision-making for unrepresented patients. J Bioethical Inq 2017; [Epub ahead of print]; DOI: 10.1007/s11673-017-9773-1.
Despite increased calls for hospital ethics committees to serve as default decision makers about life-sustaining treatment (LST) for unrepresented patients who lack decision-making capacity or a surrogate decision maker and whose wishes regarding medical care are not known, little is known about how committees currently function in these cases. This was a retrospective cohort study of all ethics committee consultations involving decision making about LST for unrepresented patients at a large academic hospital from 2007 to 2013. There were 310 ethics committee consultations, 25 (8.1%) of which involved unrepresented patients. Results demonstrated that in 13 (52.0%) cases, the ethics consultants evaluated a possible substitute decision maker identified by social workers and/or case managers. In the remaining cases, the ethics consultants worked with the medical team to contact previous healthcare professionals to provide substituted judgment, found prior ACP documents, or identified the patient's best interest as the decision-making standard. In the majority of cases, the final decision was to limit or withdraw LST (72%) or to change code status to do not resuscitate/do not intubate (12%). Substitute decision makers who had been evaluated through the ethics consultation process and who made the final decision alone were more likely to continue LST than cases in whom physicians made the final decision (50% vs. 6.3%, p = 0.04). In our center, the primary role of ethics consultants in decision making for unrepresented patients is to identify appropriate decision-making standards. The authors conclude that in the absence of other data suggesting that ethics committees, as currently constituted, are ready to serve as substitute decision makers for unrepresented patients, caution is necessary before designating these committees as default decision makers.
Hawkins RC: Agency and communion in end-of-life decision-making. Illn Crisis Loss 2017;25:87–106.
Both the assisted suicide and the hospice or palliative medicine movements are alike in that each weighs the wishes of the patient and family for EOL medical care and decisions. The balancing of agency and communion within small communities of support may provide the opportunity to inform EOL decision making and acceptance of the dying process. In this sense, the spirit of “communitas” may instill faith that the ending of one's life journey is both reasonable and meaningful. The role of the small community of support may be akin to that of the guide who assists the aging or dying person through the dialectic of being an autonomous agent and a communicant in the EOL transition.
Cabral E, Illes J: The catch-22 of neuroimaging, disorders of consciousness, and end-of-life decisions. JAMA Neurol 2017; [Epub ahead of print]; DOI: 10.1001/jamaneurol.2016.5994.
In 2016, Canada passed legislation to legalize medical assistance in death for patients with severe, irremediable conditions. The passage of this law follows those of Switzerland, Belgium, The Netherlands, Luxembourg, and five U.S. states that allow patients to choose to die given specific criteria intended to uphold the principles of beneficence, human rights and dignity, and justice. It signals progress in the arena of EOL decision making and opens new discussions about competence and communication where technology, human intervention, or both are needed as intermediaries. The authors consider the case in which the legitimacy of technology-assisted, medically assisted dying is tested and, however seemingly far-fetched, is already in the public eye. This specific context pertains to patients with brain injuries in whom functional magnetic resonance imaging that relies on blood oxygen levels in particular brain regions, or electrophysiological measurements from the scalp, has been used to reveal signals that are interpreted as consciousness.