An Exploration of Palliative Care Needs of People With End-Stage Renal Disease on Dialysis: Family Caregiver's Perspectives.

Patients with end-stage renal disease supported on dialysis experience high morbidity and mortality. Little is known about family caregiver experiences during the disease. Qualitative research methods were used to explore the experiences of family caregivers caring for patients receiving dialysis. In-depth, semi-structured, in-person interviews were completed with 18 family caregivers in rural and urban settings. Interviews were audiotaped, transcribed verbatim, and analyzed using thematic and descriptive analysis. Major themes identified included challenges navigating the health system, caregiver burden, perceptions of palliative care, symptom management, and decision-making. Caregiver burdens are significant including physical, emotional, social, and economic dimensions. There is a need to recognize and improve support for family caregivers and increase collaboration with nephrology and palliative care services from commencement of dialysis until death and into bereavement.

Long chain monomethyl branched-chain fatty acid levels in human milk vary with gestational weight gain.

Breastfeeding is an important determinant of infant health and there is immense interest in understanding its metabolite composition so that key beneficial components can be identified. The aim of this research was to measure the fatty acid composition of human milk in an Irish cohort where we examined changes depending on lactation stage and gestational weight gain trajectory. Utilizing a chromatography approach optimal for isomer separation, we identified 44 individual fatty acid species via GCMS and showed that monomethyl branched-chain fatty acids(mmBCFA's), C15:0 and C16:1 are lower in women with excess gestational weight gain versus low gestational weight gain. To further explore the potential contribution of the activity of endogenous metabolic pathways to levels of these fatty acids in milk, we administered D2O to C57BL/6J dams fed a purified lard based high fat diet (HFD) or low-fat diet during gestation and quantified the total and de novo synthesized levels of fatty acids in their milk. We found that de novo synthesis over three days can account for between 10 and 50 % of mmBCFAs in milk from dams on the low-fat diet dependent on the branched-chain fatty acid species. However, HFD fed mice had significantly decreased de novo synthesized fatty acids in milk resulting in lower total mmBCFAs and medium chain fatty acid levels. Overall, our findings highlight the diverse fatty acid composition of human milk and that human milk mmBCFA levels differ between gestational weight gain phenotypes. In addition, our data indicates that de novo synthesis contributes to mmBCFA levels in mice milk and thus may also be a contributory factor to mmBCFA levels in human milk. Given emerging data indicating mmBCFAs may be beneficial components of milk, this study contributes to our knowledge around the phenotypic factors that may impact their levels.

Palliative and end-of-life care in Newfoundland's deaf community.

The deaf community is a distinct cultural and linguistic community (the uppercase D is a cultural identification). Compared to the general population, the deaf community, as a social group, experiences poorer health status. Deaf people seek care less frequently than the general population and have fewer interactions with the health system. Their encounters with the health system are often characterized by communication difficulties, fear, mistrust, and frustration. Qualitative research was used to explore the experiences of family caregivers who provided end-of-life care for a deaf person. Key findings indicate that the deaf community has limited understanding of their options for palliative and end-of-life care. Communication and health literacy are key barriers to accessing appropriate end-of-life care. Pain and symptom management, consideration of physical environments, and limited access to bereavement care are common issues faced by deaf people when caring for loved ones at the end of life.

Nutritional screening and assessment of paediatric cancer patients: A quality improvement project (baseline results).

BACKGROUND: The department of Haematology and Oncology at the Royal Hospital for Sick Children (RHSC) in Edinburgh have developed their own nutritional standards specific to paediatric cancer. We aimed to audit the current nutritional practice in anthropometry, nutritional biochemistry and malnutrition screening for paediatric cancer patients against nutritional standards to identify areas for nutritional-practice improvement and progress nutrition-related clinical outcomes. METHODS: A Clinical audit was conducted >20 weeks between 2015 and 2017 in three data collection locations (inpatient (IP), day-care (DC), or outpatient (OP)) at RHSC. We included patients aged 0-18 years and undergoing treatment for diagnosed malignant childhood cancer (ICCC-3 or Langerhans Cell Histiocytosis). Data were collected by analysing documentation and observing clinical practice for frequency and mode of administration of anthropometry, malnutrition screening, nutritional biochemistry and resulting documentation completion. Results were presented as descriptive statistics and stratified by percentage of standard met (100%, 99-70%, <70%). RESULTS: 185 audited patient records (22 IP, 54 DC and 109 OP) were analysed. The areas which were <70% of the standard were: height and weight documentation for DC; head-circumference for IP; arm anthropometry assessment for all locations; initial PYMS screening and re-screening in IP; malnutrition screening in DC and OP; and initial assessment and re-assessment for serum vitamins D, A, E, B12 and parathyroid hormone levels. CONCLUSION: Baseline nutritional practice was successfully established, identifying areas for practice improvement in the RHSC Paediatric Oncology and Haematology Department; this will be implemented in the next step of the audit to optimise patient care.

Prevalence and correlates of pain in the Canadian National Palliative Care Survey.

BACKGROUND: Pain is a common problem for people with cancer who are nearing the ends of their lives. OBJECTIVE: In the present multicentre Canadian study of palliative cancer care, the prevalence of pain, its perceived severity and its correlates across a range of physical, social, psychological, and existential symptoms and concerns were examined. METHODS: Semistructured interviews were conducted with 381 patients. In addition to inquiring about pain, the interview also assessed 21 other symptoms and concerns, and collected information about demographic characteristics, functional status and medication use. RESULTS: Pain of any intensity was reported by 268 (70.3%) participants, although for 139 (36.5%), the severity was rated as minimal or mild. For 129 (33.9%) individuals, pain was reported as moderate to extreme, and considered by the respondents to be an important ongoing problem. Patients who reported moderate to extreme pain were younger than other participants, but had lower functional status and a shorter median survival duration. They were more likely than other participants to be treated with opioid medications (P<0.001) and, less reliably, with benzodiazepines (P=0.079). Compared with participants with no, minimal or mild pain, those with moderate to extreme pain had a higher prevalence of distressing problems on 11 of 21 other symptoms and concerns. The strongest correlations were with general malaise (rho = 0.44), suffering (rho = 0.40), nausea (rho = 0.34), weakness (rho = 0.31), drowsiness (rho = 0.29) and anxiety (rho = 0.29). CONCLUSIONS: Pain continues to be a difficult problem for many patients who are receiving palliative cancer care, particularly younger individuals who are nearing death.

HCV screening, linkage to care, and treatment patterns at different sites across one academic medical center.

BACKGROUND: It is unclear whether sites that screen large numbers of patients for Hepatitis C Virus but achieve limited follow-up are more or less effective at having patients succeed through linkage and treatment than lower volume sites that have higher linkage percentages. The objective was to compare the rates of HCV identification, linkage to care, and treatment success between different study sites including the Emergency Department, 3 outpatient clinics with unique patients, and the inpatient setting at one medical center. METHODS: This is a descriptive analysis of 2 years of data from a protocol that integrated HCV screening and treatment into clinical services throughout multiple departments in one medical center. The program used a best practice advisory to prompt testing at all sites, with different triggers for it to fire at each site, and one central navigation program that attempted to link all patients diagnosed with hepatitis C virus to outpatient care. Outcomes included volume of tests performed in each site, Antibody and RNA rates at each site, demographic data, navigation and linkage outcomes, and post-linkage treatment completion. RESULTS: 28,435 patients were screened across 5 clinical locations. RNA+ rates and absolute numbers linked to MD (linkage rates among all RNA+) were: ED 7.2% RNA+, 224 (22.6%) linked; Inpatient 14.8% RNA+, 27 (17.6%) linked, General Internal Medicine 3.9% RNA+, 269 (65.8%) linked, Infectious Diseases 4.0% RNA+, 34(70.8%) linked, Family Medicine 2.0% RNA+, 28 (75.7%) linked. Demographics, linkage barriers, and treatment initiation rates were different at all sites. CONCLUSION: Among sites there were differences in the sociodemographic characteristics of patients diagnosed with HCV, as well as differences in the success linking patients to outpatient care. At this medical center, the ED screened the most patients, the inpatient area had the highest RNA positivity rate, the FM clinic had the highest linkage rate, GIM linked the most patients by absolute number, and GIM also had the highest number of patients start treatment.

Desire for euthanasia or physician-assisted suicide in palliative cancer care.

OBJECTIVE: To investigate the attitudes of terminally ill individuals toward the legalization of euthanasia or physician-assisted suicide (PAS) and to identify those who would personally desire such a death. DESIGN: In the Canadian National Palliative Care Survey, semistructured interviews were administered to 379 patients who were receiving palliative care for cancer. Patients who expressed a desire for physician-hastened death were followed prospectively. MAIN OUTCOME MEASURES: Attitudes toward the legalization of euthanasia or PAS were determined, as was the personal interest in receiving a hastened death. Demographic and clinical characteristics were also recorded, including a 22-item structured interview of symptoms and concerns. RESULTS: There were 238 participants (62.8%) who believed that euthanasia and/or PAS should be legalized, and 151 (39.8%) who would consider making a future request for a physician-hastened death. However, only 22 (5.8%) reported that, if legally permissible, they would initiate such a request right away, in their current situations. This desire for hastened death was associated with lower religiosity (p=.010), reduced functional status (p=.024), a diagnosis of major depression (p<.001), and greater distress on 12 of 22 individual symptoms and concerns (p<.025). In follow-up interviews with 17 participants, 2 (11.8%) showed instability in their expressed desire. CONCLUSION: Among patients receiving palliative care for cancer, the desire to receive euthanasia or PAS is associated with religious beliefs; functional status; and physical, social, and psychological symptoms and concerns. Although this desire is sometimes transitory, once firmly established, it can be enduring.

Depression and anxiety disorders in palliative cancer care.

Depression and anxiety disorders are thought to be common in palliative cancer care, but there is inconsistent evidence regarding their relevance for other aspects of quality of life. In the Canadian National Palliative Care Survey, semi-structured interviews assessing depression and anxiety disorders were administered to 381 patients who were receiving palliative care for cancer. There were 212 women and 169 men, with a median survival of 63 days. We found that 93 participants (24.4%, 95% confidence interval=20.2-29.0) fulfilled Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition diagnostic criteria for at least one anxiety or depressive disorder (20.7% prevalence of depressive disorders, 13.9% prevalence of anxiety disorders). The most frequent individual diagnosis was major depression (13.1%, 95% confidence interval=9.9-16.9). Comorbidity was common, with 10.2% of participants meeting criteria for more than one disorder. Those diagnosed with a disorder were significantly younger than other participants (P=0.002). They also had lower performance status (P=0.017), smaller social networks (P=0.008), and less participation in organized religious services (P=0.007). In addition, they reported more severe distress on 14 of 18 physical symptoms, social concerns, and existential issues. Of those with a disorder, 39.8% were being treated with antidepressant medication, and 66.7% had been prescribed a benzodiazepine. In conclusion, it appears that depression and anxiety disorders are indeed common among patients receiving palliative care. These disorders contribute to a greatly diminished quality of life among people who are dying of cancer.

Mental disorders and the desire for death in patients receiving palliative care for cancer.

OBJECTIVES: The desire for death in terminally ill patients is associated with depression and anxiety, but not all patients who report it meet criteria for mental disorders. We examined the characteristics of subgroups of palliative cancer patients who expressed a desire for death that occurred either with or without a concurrent depressive or anxiety disorder. DESIGN: Cross-sectional survey. SETTING: Eight Canadian palliative care programs. PARTICIPANTS: 377 patients with cancer. MAIN OUTCOME MEASURES: Desire for Death Rating Scale; Structured Interview of Symptoms and Concerns. RESULTS: Most participants (69.5%) had no desire for death. Of the remainder, 69 (18.3%) acknowledged occasional transient thoughts, and 46 (12.2%) reported an apparently genuine desire to die. In the latter group, 24 individuals (52.2%) were diagnosed with a mental disorder and 22 (44.8%) were not. Individuals with no serious desire for death and no mental disorder reported the least distress in physical, social, existential, and psychological symptoms and concerns; those with a mental disorder and a significant desire for death reported the most. The subgroup of patients with a serious desire for death but no concurrent mental disorders still reported increased distress due to physical symptoms and social concerns, as well as a higher prevalence of global suffering. CONCLUSIONS: The expression of a desire for death by a terminally ill patient should raise a suspicion about mental health problems, but is not in itself clearly indicative of one. Nevertheless, it may serve as a catalyst to review the individual's physical symptom management and interpersonal concerns, and overall sense of suffering.

Prognostic acceptance and the well-being of patients receiving palliative care for cancer.

PURPOSE: To identify the impact of prognostic acceptance/nonacceptance on the physical, psychological, and existential well-being of patients with advanced cancer. PATIENTS AND METHODS: A Canadian multicenter prospective national survey was conducted of patients diagnosed with advanced cancer with an estimated survival duration of 6 months or less (n = 381) receiving palliative care services. RESULTS: Of the total number of participants, 74% reported accepting their situation and 8.6% reported accepting with "moderate" to "extreme" difficulty. More participants with acceptance difficulties than without acceptance difficulties met diagnostic criteria for a depressive or anxiety disorder (chi(2) = 8.67; P < .01). Nonacceptors were younger (t = 4.13; P < .000), had more than high school education (chi(2) = 4.69; P < .05), and had smaller social networks (t = 2.53; P < .05) than Acceptors. Of the Nonacceptors, 42% described their experience as one of "moderate" to "extreme" suffering compared with 24.1% of Acceptors (chi(2) = 5.28; P < .05). More than one third (37.5%) of Nonacceptors reported feeling hopeless compared with 8.6% who had no difficulty accepting (chi(2) = 24.76; P < .000). Qualitatively, participants described active and passive coping strategies that helped them accept what was happening to them, as well as barriers that made it difficult to come to terms with their current situation. CONCLUSION: The challenge of coming to terms with a terminal prognosis is a complex interplay between one's basic personality, the availability of social support, and one's spiritual and existential views on life. Nonacceptance appears to be highly associated with feelings of hopelessness, a sense of suffering, depression, and anxiety, along with difficulties in terms of social-relational concerns.

Suffering with advanced cancer.

PURPOSE: The alleviation of suffering is a central goal of palliative care, but little research has addressed the construct of suffering as a global experience of the whole person. We inquired into the sense of suffering among patients with advanced cancer to investigate its causes and correlates. PATIENTS AND METHODS: Semistructured interviews were administered to 381 patients. The interviews inquired about physical symptoms, social concerns, psychological problems, and existential issues. We also asked, "In an overall, general sense, do you feel that you are suffering?" RESULTS: Almost half (49.3%) of respondents did not consider themselves to be suffering, and 24.9% felt that they suffered only mildly. However, 98 participants (25.7%) were suffering at a moderate-to-extreme level. The latter participants were more likely to experience significant distress on 20 of the 21 items addressing symptoms and concerns; the highest correlations were with general malaise (rho [rho]= 0.56), weakness ( = 0.42), pain ( = 0.40), and depression ( = .39). In regression analyses, physical symptoms, psychological distress, and existential concerns, but not social issues, contributed to the prediction of suffering. In qualitative narratives, physical problems accounted for approximately half (49.5%) of patient reports of suffering, with psychological, existential, and social concerns accounting for 14.0%, 17.7%, and 18.8%, respectively. CONCLUSION: Many patients with advanced cancer do not consider themselves to be suffering. For those who do, suffering is a multidimensional experience related most strongly to physical symptoms, but with contributions from psychological distress, existential concerns, and social-relational worries.