Flying blind: sources of distress for family caregivers of palliative cancer patients managing pain at home.

Pain requiring treatment is experienced by many cancer patients at the end of life. Family caregivers are often directly implicated in pain management. This article highlights areas of psychosocial concern for family caregivers managing a family member's cancer pain at home as they engage in pain management processes. This article is based on the secondary analysis, guided by interpretive description, of data collected for a grounded theory study that explored the processes used by family caregivers to manage cancer patients' pain in the home. Interviews and field notes from 24 family caregiver interviews were examined to identify areas of family caregiver psychosocial distress. The analysis revealed that family caregivers experienced distress at different phases of the pain management process. Sources of distress for caregivers included feeling as though they were "in a prison" (overwhelmingly responsible), "lambs to slaughter" (unsupported), and "flying blind" (unprepared). In addition, family caregivers expressed distress when witnessing their loved one in pain and when pain crises invoked thoughts of death. In sum, family caregivers managing a loved one's cancer pain at home are at risk for psychosocial distress. This study identified four key sources of distress that can help health care professionals better understand the experiences of these family caregivers and tailor supportive interventions to meet their needs. Knowledge about sources of distress can help healthcare professionals understand the experiences of these family caregivers and tailor supportive interventions to meet their needs.

"Reflection and soul searching": Negotiating nursing identity at the fault lines of palliative care and medical assistance in dying.

Authorities within the field of palliative care frequently espouse that assisted death is - and must remain - separate from palliative care. This fault line, between palliative care and assisted death, has important implications for how we enact end-of-life care, particularly in jurisdictions where assisted death is legal. And yet little is known about how direct-care clinicians providing palliative care navigate this demarcation in everyday practice. This qualitative study reports on semi-structured interviews with 22 palliative care nurses from across Canada, where assisted death was legalized in 2016. Although a minority of participants did express categorical opinions around the (non) legitimacy of assisted death as an ethical end-of-life care option, most engaged in an ongoing and sometimes painful process of questioning and self-examination. Their ethical reflections were more nuanced than simply dismissing MAiD as incompatible with palliative care philosophy; yet this idea of incompatibility weighed heavily as they reasoned through their experiences and questioned their own perspectives. Nurses described grappling with the finality of assisted death, which contradicts their belief in the telos of palliative care; when adequately resourced, palliative care should be available to support people to live well before death. At the same time, commitment to important palliative care values such as the non-abandonment of dying people and respecting peoples' individual end-of-life choices reveal the possibility of overlap between the ethos of assisted death and that of palliative care nursing. Drawing on scholarship in feminist ethics, our study sheds light on the moral identity work that assisted dying catalyzes amongst palliative care nurses. We highlight what is at stake for them as they navigate a delicate tension in responding ethically to patients whose suffering motivates an interest in assisted death, from within a wider professional collective that upholds a master narrative about the incompatibility of assisted death and palliative care.

Palliative care: a need for a family systems approach.

OBJECTIVE: When a family member is faced with a terminal illness, the impending death presents a crisis and a challenge to the entire family as a system. This article highlights the importance of caring for a family when one member has a life-threatening illness, and describes the applicability of Family Systems Theory and its major tenets to the palliative cancer population. METHODS: A MedLine and CINAHL search of Family Systems Theory related papers was conducted. RESULTS: Research studies that have been done fail to capture the view of the entire family system, often limiting the perspectives of the family to one single member. The concepts of holism, balance, boundaries, and hierarchal subsystems must be addressed in the care of any family, including those who have a family member who is dying. SIGNIFICANCE OF RESULTS: A Family Systems Theory framework can be useful in helping health care providers, and particularly nurses, deliver optimal care to palliative cancer patients and their families and standardize the way research is done by providing an appropriate framework with which to study the family. In addition, the adoption of Family Systems Theory as the standard framework from which to study families in palliative care will provide consistency for future studies that is presently lacking. Finally, nursing interventions to care for the family are suggested based on Family Systems Theory.

'I'm only dealing with the acute issues': How medical ward 'busyness' constrains care of the dying.

Acute hospital units are a common location of death. Curative characteristics of the acute medical setting make it difficult to provide adequate palliative care; these characteristics include an orientation to life-prolonging treatment, an emphasis on routine or task-oriented care and a lack of priority on emotional engagement with patients. Indeed, research shows that dying patients in acute medical units often experience unmet needs at the end of life, including uncontrolled symptoms (e.g. pain, breathlessness), inadequate emotional support and poor communication. A focused ethnography was conducted on an acute medical ward in Canada to better understand how this curative/life-prolonging care environment shapes the care of dying patients. Fieldwork was conducted over a period of 10 months and included participant-observation and interviews with patients, family members and staff. On the acute medical ward, a 'logic of care' driven by discourses of limited resources and the demanding medical unit created a context of busyness. Staff experienced an overwhelming workload and felt compelled to create priorities, which reflected taken-for-granted values regarding the importance of curative/life-prolonging care over palliative care. This could be seen through the way staff prioritized life-prolonging practices and rationalized inconsistent and less attentive care for dying patients. These values influenced care of the dying through delaying a palliative approach to care, limiting palliative care to those with cancer and providing highly interventive end-of-life care. Awareness of these taken-for-granted values compels a reflective and critical approach to current practice and how to stimulate change.

Phase II study of neoadjuvant carboplatin and paclitaxel followed by radiotherapy and concurrent cisplatin in patients with locoregionally advanced nasopharyngeal carcinoma: therapeutic monitoring with plasma Epstein-Barr virus DNA.

PURPOSE: To assess the efficacy of neoadjuvant paclitaxel and carboplatin (TC) followed by concurrent cisplatin and radiotherapy (RT) in patients with locoregionally advanced nasopharyngeal carcinoma (NPC) and to monitor treatment response with plasma Epstein-Barr virus (EBV) DNA. PATIENTS AND METHODS: Thirty-one patients with International Union Against Cancer stages III and IV undifferentiated NPC had two cycles of paclitaxel (70 mg/m2 on days 1, 8, and 15) and carboplatin (area under the curve 6 mg/mL/min on day 1) on a 3-weekly cycle, followed by 6 to 8 weeks of cisplatin (40 mg/m2 weekly) and RT at 66 Gy in 2-Gy fractions. Plasma EBV DNA was measured serially using the real-time quantitative polymerase chain reaction method. Results All patients completed planned treatment. Response to neoadjuvant TC was as follows: 12 patients (39%) achieved partial response (PR) and 18 achieved (58%) complete response (CR) in regional nodes; five patients (16%) achieved PR and no patients achieved CR in nasopharynx. At 6 weeks after RT, one patient (3%) achieved PR and 30 patients (97%) achieved CR in regional nodes, and 31 patients (100%) achieved CR in nasopharynx; 29 patients (93%) had EBV DNA level of less than 500 copies/mL. Neoadjuvant TC was well tolerated, and the most common acute toxicity of cisplatin plus RT was grade 3 mucositis (55%). At median follow-up of 33.7 months (range, 7 to 39.3 months), six distant and three locoregional failures occurred. Plasma EBV DNA level increased significantly in eight of nine patients who experienced treatment failure but did not increase in those who did not. The 2-year overall and progression-free survival rates were 91.8% and 78.5%, respectively. CONCLUSION This strategy was feasible and resulted in excellent local tumor control. Serial plasma EBV DNA provides a noninvasive method of monitoring response in NPC.