CONTEXT: Many in the rapidly-growing Chinese-American population are non-English-speaking and medically-underserved, and few engage in advance care planning (ACP). Evaluating culturally-determined factors that may inhibit ACP can inform programs designed to increase ACP engagement.
OBJECTIVES: To describe attitudes and beliefs concerning ACP in older, non-English speaking Chinese-Americans in a medically-underserved urban region.
METHODS: Patients were consecutively recruited from a primary care practice in New York City to participate in a cross-sectional survey. Attitudes and beliefs were measured using an ACP Survey tool and the validated Traditional Chinese Death Beliefs measure. Exploratory analyses evaluated associations between these two measures, and between each measure and sociodemographics, primary dialect, acculturation (using The Suinn-Lew Asian Self Identity Acculturation Scale), and health status (using the Short Form-8 Health Survey).
RESULTS: Patients (n=179) were 68.2 years on average; 55.9% were women, and 81.0% were non-English speaking (42.8% Cantonese, 15.2% Mandarin, 19.3% Toisanese, 19.3% Fuzhounese). Most had low acculturation (mean=1.7/5.0), and highly-rated physical and mental health (means=70.1/100 and 81.5/100). Few patients (15.1%) had an advance directive and 56.8% were unfamiliar with any type; 74.4% were willing to complete one in the future. Thirty-two percent "agreed" that "talking about death in the presence of a dying person would accelerate death". The analyses revealed no significant associations.
CONCLUSION: These Chinese-American older adults had low acculturation and very limited knowledge of, or engagement in, ACP. Factors that may predict culturally-determined attitudes and beliefs about ACP were not identified. Further research can inform efforts to improve ACP engagement in this population.
Background: Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants.
Purpose: The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital.
Methods: This was a retrospective medical record review.
Findings: The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management.
Implications for Practice: Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU.
Implications for Research: These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms.
Background: Advance care planning (ACP) is a process that enables individuals to describe, in advance, the kind of health care they would want in the future, and has been shown to reduce hospital-based interventions at the end of life. Our goal was to describe the current state of ACP in a home-based primary care program for frail homebound older people in Vancouver, Canada. We did this by identifying four key elements that should be essential to ACP in this program: frailty stage, documentation of substitute decision-makers, and decision-making with regard to both resuscitation (i.e., do not resuscitate (DNR)) and hospitalization (i.e., do not hospitalize (DNH)). While these elements are an important part of the ACP process, they are often excluded from common practice.
Methods: This was a cross-sectional, observational study of data abstracted from 200 randomly selected patient electronic medical records between July 1 and September 30, 2017. We describe the association between demographic characteristics, comorbidities, and four key elements of ACP documentation and decision-making as documented in the clinical record using bivariate comparison, a logistic regression model and multiple logistic regression analysis.
Results: In 73% (n=146) of the patient records, there was no explicit documentation of frailty stage. Sixty-four per cent had documentation of a substitute decision-maker. Of those who had their preferences documented, 90.6% (n=144/159) indicated a preference for DNR, and 23.6% (n=29/123) indicated a preference for DNH. In multiple regression modeling, a diagnosis of dementia and older age were associated with documentation of a DNR preference, adjusted odds ratio (AOR) = 4.79 (95% CI 1.37, 16.71) and AOR = 1.14 (95% CI 1.05, 1.24), respectively. Older age, male sex, and English identified as the main language spoken were associated with a DNH preference. AOR = 1.17 (95% CI 1.06, 1.28), AOR = 4.19 (95% CI 1.41, 12.42), and AOR = 3.42 (95% CI 1.14, 10.20), respectively.
Conclusions: Clinician documentation of some elements of ACP, such as identification of a substitute decision-maker and resuscitation status, have been widely adopted, while other elements that should be considered essential components of ACP, such as frailty staging and preferences around hospitalization, are infrequent and provide an opportunity for practice improvement initiatives. The significant association between language and ACP decisions suggests an important role for supporting cross-cultural fluency in the ACP process.
Although palliative care (PC) has become increasingly familiar, considerable gaps persist in access to and use of services. Community-based programs remain rare, and low-income, minority communities significantly under-utilize hospice and palliative services. We used community-based participatory research (CBPR) methods to conduct a mixed-methods community needs assessment of seriously-ill older adults (n=100) and providers from community-based programs and churches (n=41) in an urban medically-underserved community in the U.S. to explore: (I) the prevalence and severity of illness-related symptoms and psychosocial-spiritual concerns; (II) the scope and quality of community supports helping older adults manage their symptoms; and (III) the perceptions and utilization of palliative and supportive care services among older adults and community-based service providers. Participants reported high rates of chronic illness-related symptoms (i.e., pain, fatigue, sleeping difficulties, depression, and anxiety), and many described unmet needs around symptom management. Few had ever utilized PC or pain management services, and most relied primarily on family, friends, and faith communities to help them manage burdensome symptoms. Barriers included lack of familiarity with PC, limited access and financial concerns. Older adults were largely unfamiliar with PC, and many described unmet needs and desire for help with symptom burden. Findings support the need to further explore community-level and cultural barriers to PC among diverse, underserved older adults. Development of innovative community partnerships may help raise awareness of PC and address the physical and psychosocial-spiritual challenges facing chronically-ill minority older adults and their families.
Background: The World Health Organization estimates that around 6 million people need palliative care in India but not even 1% of the patients have access to it.
Objective: To find the prevalence of knowledge on palliative care and compare the effectiveness of different methods of health education on attitude regarding palliative care among urban college students in southern India.
Subjects: A pre-post intervention study was conducted in three different arts, science and commerce colleges in urban Pondicherry in August 2017.
Methods: Data regarding attitude change towards palliative care by three different modes of intervention in the three colleges: health talk (Group A), health talk with video (Group B) and health talk and interaction with a patient's caregiver (Group C) - before and after intervention - were collected using a predesigned pretested structured questionnaire.
Results: Among the 65, 75 and 67 participants in Groups A, B and C, respectively - the majority belonged to urban nuclear families; the mean age was 19.5 (0.9) years and Group C had only female students. The prevalence of knowledge about palliative care was found to be 9.2%. There was a difference in attitude scores among the three groups (p = 0.02) with Group C having the highest change of a score with a median of 2 (-1,5). Conclusion: Awareness about palliative care is very low among non-medical undergraduate college students of urban Pondicherry. The best method of health education in changing the attitude towards palliative care was interaction with patient's caregiver.
OBJECTIVE: To evaluate associations between US region of residence and urbanization and the place of death among women with gynecologic malignancies in the United States.
METHODS: A retrospective cross-sectional study was performed using publicly available death certificate data from the National Center for Health Statistics. All gynecologic cancer deaths were included from 2006 to 2016. Comparisons among categories were performed with a two-tailed chi-square test, with p-values <0.05 considered significant.
RESULTS: From 2006 to 2016, 328,026 women died from gynecologic malignancies in the US. Of these deaths, 40.1% (n = 134,333) occurred in the patient's home, 24.9%(n = 81,823) in the hospital, and 11.3% (37,188) in an inpatient hospice facility. Place of death varied by geographic region. The Northeast had the largest percentage of gynecologic cancer patients (31.3%) die as a hospital inpatient. The West had the highest percentage of deaths (49.3%) at home. Deaths in a hospice facility were the highest (14.1%) in the South. Place of death varied by urbanization; patients residing in large central metro or rural counties were the most likely to die during hospital admission (28.7% and 27.1%, respectively). Patients living in medium-sized metro areas were the least likely to die in hospitals (21.8%) and most likely to die in a hospice facility (14.3%). All comparisons were significant by study definition.
CONCLUSION: The place of death for patients with gynecologic malignancies varies by US region and urbanization. These disparities are multifactorial in nature, likely influenced by both sociodemographic factors and regional resource availability. In this study, however, rural and central metro areas are identified as regions that may benefit from further hospice development and advocacy.
Background: Inpatient palliative care consultation services have been shown to have a dramatic impact on the time cancer patients spend in the hospital, which directly affects overall health care charges and expenditures.
Objective: Our study looks at early palliative care consults in patients with a variety of chronic medical conditions as well as cancer.
Design: This is a retrospective case-control study of patients referred to the palliative care department from April 2014 to June 2016.
Setting/Subjects: This study took place at a university-affiliated community-based urban tertiary care hospital. Cases were patients with a referral placed for a palliative care consult <24 hours after registration into the hospital. Controls were chosen on a one-to-one basis from all other patients referred 24 or more hours after registration. Participants were matched on underlying disease, Charlson comorbidity index, and date of referral.
Measurements: Primary outcomes were hospital length of stay and total hospital charges.
Results: The median (interquartile range) length of stay was 4.2 days (2.0–7.2) for cases and 9.7 days (6.0–18.3) for the control group; p < 0.001. Total hospital charges in U.S. dollars for cases and controls was $38,600 ($22,700–$66,900) and $95,300 ($55,200–$192,700), respectively; p < 0.001. Similar differences were seen for cancer and chronic disease cases and controls.
Conclusions: Our study demonstrates a significant association between reduced length of stay and hospital charges when consults for palliative care were initiated within 24 hours of hospital admission regardless of underlying disease.
OBJECTIVE: During critical care, physicians are frequently confronted with bad-news communication because of patients' frail conditions. Delivering bad news is not easy, certainly not when patients from ethnic minority groups are involved. In this study we investigate the delivery of bad news in a multi-ethnic critical care context.
METHODS: Ethnographic fieldwork in one intensive care unit of a multi-ethnic urban hospital in Belgium. Data were collected through negotiated interactive observation, in-depth interviews and from reading patients' medical records. Data were thematically analysed.
RESULTS: Bad-news communication was primarily dominated by physicians. Patients' and relatives' input and other professionals' involvement in the communication was limited. Staff encountered ethno-cultural related difficulties, firstly, in choosing suitable conversation partner(s); secondly, in choosing the place of conversations and thirdly, in the information exchange. Staff usually tried to address these problems themselves on the spot in a quick, pragmatic way. Sometimes their approaches seemed to be more emotion-driven than well thought-out.
CONCLUSION: Delivering bad news in a multi-ethnic intensive care unit has a number of specific difficulties. These can have negative consequences for parties involved.
PRACTICE IMPLICATIONS: The challenges of an adequate delivery of bad news need a team-approach and a well thought-out protocol.
OBJECTIVES: Music therapy has been shown to be effective for reducing anxiety and pain in people with a serious illness. Few studies have investigated the feasibility of integrating music therapy into general inpatient care of the seriously ill, including the care of diverse, multiethnic patients. This leaves a deficit in knowledge for intervention planning. This study investigated the feasibility and effectiveness of introducing music therapy for patients on 4 inpatient units in a large urban medical center. Capacitated and incapacitated patients on palliative care, transplantation, medical intensive care, and general medicine units received a single bedside session led by a music therapist.
METHODS: A mixed-methods, pre-post design was used to assess clinical indicators and the acceptability and feasibility of the intervention. Multiple regression modeling was used to evaluate the effect of music therapy on anxiety, pain, pulse, and respiratory rate. Process evaluation data and qualitative analysis of observational data recorded by the music therapists were used to assess the feasibility of providing music therapy on the units and patients' interest, receptivity, and satisfaction.
RESULTS: Music therapy was delivered to 150 patients over a 6-month period. Controlling for gender, age, and session length, regression modeling showed that patients reported reduced anxiety post-session. Music therapy was found to be an accessible and adaptable intervention, with patients expressing high interest, receptivity, and satisfaction.
SIGNIFICANCE OF RESULTS: This study found it feasible and effective to introduce bedside music therapy for seriously ill patients in a large urban medical center. Lessons learned and recommendations for future investigation are discussed.
In this needs assessment, gathered patient perceptions on how telemedicine video visits might influence their care. Patients in this study (n = 13) were all diagnosed with end-stage cancer and were receiving palliative care at an urban academic medical center. Interview themes addressed: 1. impact on patient's health management, 2. user experience, 3. technical issues and 4. cost and time. Ultimately, despite concerns over truncated physical exams and prescription limits, the majority of patients favored having the opportunity for telemedicine video visits, felt that the doctor-patient relationship would not suffer, had confidence in their or their surrogate's technical abilities to navigate the video visit, had privacy concerns on par with other technologies, had few cost concerns, and believed a video alternative to an in-person visit might increase access, save time as well as increase comfort and safety by avoiding a trip to the office. These results suggest potential for acceptance of video-based telemedicine by an urban population of oncology patients receiving palliative care.
BACKGROUND: Cancer is the second leading cause of death globally, causing a substantial economic burden on cancer suffers and their families. The aim of this study is to explore the prevalence, determinants and consequences of catastrophic health expenditure (CHE) among urban and rural end-of-life (EOF) cancer patients in China.
METHODS: Using respondent-driven sampling and face-to-face interviews, field research was conducted with a specialist questionnaire. Data were collected on 792 cancer patients who died between June 2013 and June 2016 in China. The determinants of household catastrophic expenditure were identified by multivariate logistic regression.
FINDINGS: It is found that more than 80% of cancer patients received life-extending treatment. Extremely high rates of CHE were identified among EOL cancer patients, at 94.3% for urban families and 96.1% for rural families. After spending for health, 84.1% of urban and 91.1% rural EOL cancer patient households were impoverished, falling below the poverty line. For both urban and rural households, income was the most significant factor associated with catastrophic health expenditure (CHE). Health insurance did not adequately compensate for CHE. Rural families experienced higher CHE, lower levels of health care utilization, a different mix of health care access and higher rates of borrowing for out-of-pocket (OOP) health care expenditures than urban families. Both urban and rural households suffered long-term economic disadvantage due to CHE and borrowing for OOP medical care expenses.
CONCLUSIONS: EOL cancer patients experienced severe CHE, with families forced into poverty. With only about 1% of EOL cancer patients receiving palliative care, developing palliative care services and expanding the acceptance of palliative care in China is both urgent and essential. To help address impoverishment due to CHE, China should also develop targeted programs to reduce income inequality, especially rural-urban inequalities; increase access to health care; and accelerate health reform. Increasing the retirement age would provide households with more savings and wealth to withstand CHE.
Background: Little is known about the role of geographic access to inpatient palliative and end of life care (PEoLC) facilities in place of death and how geographic access varies by settlement (urban and rural). This study aims to fill this evidence gap.
Methods: Individual-level death data in 2014 (N = 430,467, aged 25 +) were extracted from the Office for National Statistics (ONS) death registry and linked to the ONS postcode directory file to derive settlement of the deceased. Drive times from patients’ place of residence to nearest inpatient PEoLC facilities were used as a proxy estimate of geographic access. A modified Poisson regression was used to examine the association between geographic access to PEoLC facilities and place of death, adjusting for patients’ socio-demographic and clinical characteristics. Two models were developed to evaluate the association between geographic access to inpatient PEoLC facilities and place of death. Model 1 compared access to hospice, for hospice deaths versus home deaths, and Model 2 compared access to hospitals, for hospital deaths versus home deaths. The magnitude of association was measured using adjusted prevalence ratios (APRs).
Results: We found an inverse association between drive time to hospice and hospice deaths (Model 1), with a dose–response relationship. Patients who lived more than 10 min away from inpatient PEoLC facilities in rural areas (Model 1: APR range 0.49–0.80; Model 2: APR range 0.79–0.98) and urban areas (Model 1: APR range 0.50–0.83; Model 2: APR range 0.98–0.99) were less likely to die there, compared to those who lived closer (i.e. = 10 min drive time). The effects were larger in rural areas compared to urban areas.
Conclusion: Geographic access to inpatient PEoLC facilities is associated with where people die, with a stronger association seen for patients who lived in rural areas. The findings highlight the need for the formulation of end of life care policies/strategies that consider differences in settlements types. Findings should feed into local end of life policies and strategies of both developed and developing countries to improve equity in health care delivery for those approaching the end of life.
Background: The quality of the dying experience among older adults should improve with a better understanding of the dying experience and its association with the place of death in Mainland China.
Objective: This study investigated the relationship between the dying experience and place of death among older Chinese adults in the context of an urban-rural bifurcated system.
Design: We used the end-of-life module data from the China Longitudinal Aging Social Survey conducted in 2014 and 2016 with an eligible sample of 352 decedents ages 60 and older. Facial expression and sadness at the end of life were indicators of the dying experience in the present study. We performed multiple regression models to examine the association between the place of death and dying experience after adjusting for an ecological array of factors at the individual, family, and community levels.
Results: The urban–rural differences in the association between facial expression at death and place of death were identified (interaction term: ß = 0.16, p = 0.004). Among the decedents with a rural residence status, dying in a hospital was associated with a more peaceful facial expression at death than dying at home (p < 0.001). Among the decedents with an urban residence status, the place of death was not significantly related to the dying experience.
Conclusion: Although home is perceived as a common place for death, the findings revealed that dying at home was less positive for rural older adults compared with dying in hospital. Bridging the gaps between urban and rural areas is necessary for the reform and construction of health care and long-term care systems in China.
Background: People with heart failure (HF) have high morbidity and mortality and may benefit from palliative care (PC).
Objective: To pilot a randomized, clinical trial of a PC intervention for people with HF.
Design: Participants were randomized to usual care (UC) or intervention (UC plus specialty PC) between January 2012 and December 2013. The initial PC consultation was conducted in-hospital, with six additional contacts from the PC team over six months.
Setting/Subjects: The study was undertaken in a large, urban, academic medical center with patients (n = 30) with New York Heart Association HF Class II–IV.
Measurements: Patients completed a survey at baseline, three and six months, assessing pain, dyspnea, depression, and quality of life (QoL).
Results: Although there were significant improvements in mean scores from baseline to six months for pain (4.3 vs. 2.4, p = 0.05), dyspnea (3.9 vs. 2.2, p = 0.03), and QoL (59.2 vs. 42.7, p = 0.001), there were no differences between study groups over time. On average, participants in the intervention group received 5 out of 6 contacts and were satisfied with the intervention.
Conclusions: The intervention was well accepted by patients, safe, and feasible. Our findings suggest that PC interventions for people with HF should match the PC needs of the patient. Given the trajectory of HF, studies may need to recruit outpatients and follow patients for a longer period to fully evaluate the impact of PC interventions. Clinical trials Identifier: NCT01461681.
PURPOSE: Family meetings in the medical intensive care unit can improve outcomes. Little is known about when meetings occur in practice. We aimed to determine the time from admission to family meetings in the medical intensive care unit and assess the relationship of meetings with mortality.
METHODS: We performed a prospective cohort study of critically ill adult patients admitted to the medical intensive care unit at an urban academic medical center. Using manual chart review, the primary outcome was any attempt at holding a family meeting within 72 hours of admission. Competing risk models estimated the time from admission to family meeting and to patient death or discharge.
RESULTS: Of the 131 patients who met inclusion criteria in the 12-month study period, the median time from admission to family meeting was 4 days. Fewer than half of patients had a documented family meeting within 72 hours of admission (n = 60/131, 46%), with substantial interphysician variability in meeting rates ranging from 28% to 63%. Patients with family meetings within 72 hours were 30 times more likely to die within 72 hours (32% vs 1%, P < .001). Of the 55 patients who died in the intensive care unit, 27 (49%) had their first family meeting within 1 day of death.
CONCLUSIONS: Family meetings occur considerably later than 72 hours and are often held in close proximity to a patient's death. This suggests for some physicians, family meetings may primarily be used to negotiate withdrawal of life support rather than to support the patient and family.
BACKGROUND: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood.
OBJECTIVE: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer.
METHODS:: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015.
RESULTS: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity.
CONCLUSIONS: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.
Background: Access to palliative care has been associated with improving quality of life and reducing the use of potentially aggressive end-of-life care. However, many challenges and barriers exist in providing palliative care to residents in northern and rural settings in Ontario, Canada.
Aim: The purpose of this study was to examine access to palliative care and associations with the use of end-of-life care in a decedent cohort of northern and southern, rural and urban, residents.
Design: Using linked administrative databases, residents were classified into geographic and rural categories. Regression methods were used to define use and associations of palliative and end-of-life care and death in acute care hospital.
Setting/Participants: A decedent cancer cohort of Ontario residents (2007-2012).
Results: Northern rural residents were less likely to receive palliative care (adjusted odds ratio [OR] = 0.90, 95% confidence interval [CI]: 0.83-0.97). Those not receiving palliative care were more likely to receive potentially aggressive end-of-life care and die in an acute care hospital (adjusted OR = 1.20, 95% CI: 1.02-1.41).
Conclusions: Palliative care was significantly associated with reduced use of aggressive end-of-life care; however, disparities exist in rural locations, especially those in the north. Higher usage of emergency department (ED) and hospital resources at end of life in rural locations also reflects differing roles of rural community hospitals compared with urban hospitals. Improving access to palliative care in rural and northern locations is an important care issue and may reduce use of potentially aggressive end-of-life care.
Objective This study aimed to define the end-of-life (EOL) healthcare utilisation and its cost and determinants for cancer patients and to proactively inform related strategies in mainland China.
Design A population-based retrospective study.
Setting and participants Data from 894 cancer patients were collected in urban Yichang, China from 01 July 2015 to 30 June 2017.
Outcome measures Emergency department (ED) visits, outpatient and inpatient hospitalisation services, intensive care unit (ICU) admission and total costs were used as the main outcomes.
Results In this study, 66.8% of the 894 patients were male, and the average age was 60.4 years. Among these patients, 37.6% died at home, and patients had an average of 4.86 outpatient services, 2.23 inpatient hospitalisation services and 1.44 ED visits. Additionally, 5.9% of these patients visited the ICU at least once. During the EOL periods, the costs in the last 6 months, 3 months, 1 month and 1 week were US$18 234, US$13 043, US$6349 and US$2085, respectively. The cost increased dramatically as death approached. The estimation results of generalised linear regression models showed that aggressive care substantially affected expenditure. Patients with Urban Employee Basic Medical Insurance spent more than those with Urban Resident-based Basic Medical Insurance or the New Rural Cooperative Medical Scheme. The place of death and the survival time are also risk factors for increased EOL cost.
Conclusion The findings suggested that the EOL cost for cancer patients is associated with aggressive care, insurance type and survival time. Timing palliative care is urgently needed to address ineffective and irrational healthcare utilisation and to reduce costs.
Ethics and dissemination This study was approved by the Ethics Committee of the Tongji Medical College, Huazhong University of Science and Technology (IORG No.: IORG0003571). All the data used in this study were de-identified.
While feelings of disgust and repulsion are experienced and accepted as part of care practices of nurses who work in palliative care, they are often silenced. Working alongside two palliative care nurses in a hospice setting, we engaged in a narrative inquiry to inquire into their experiences of disgust. The study took place in a palliative care setting in a large urban city in Germany. We understand care practices as actions that follow a logic of care. According to a logic of care, actions are situated within a social context, given by specific relationships including power, and individual needs. Various aspects of disgust are visible in the experiences of the participants and highlighted in the narrative threads of disgust and silence, disgust and protection, and disgust and boundaries. Embedded in the experience of disgust of nurses working in palliative care, we see that there are borderlands of care that challenge who we are and are becoming. Opening discussion about disgust in nursing makes visible the complexity of care.
BACKGROUND: Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, little is known regarding how end-of-life affects the individual's personal relationships with family, friends and staff.
METHODS: Focus group interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in NSW and Queensland, Australia. A semi-structured interview guide was used, with a focus on the gaining an understanding of the impact that end-of-life has on personal relationships for persons with intellectual disability.
RESULTS: The thematic analysis identified three key thematic areas: Relationships with Family, Relationships with Friends and Staff Roles. Relationships with Family had three sub-themes of 'Active and Ongoing', 'Active but Limited' and 'After Death'. Relationships with Friends had two sub-themes of 'Positive Experiences' and 'Negative Experiences', and Staff Roles had two sub-themes of 'Loss of Contact' and 'Default Decision Making'.
DISCUSSION: The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual's end-of-life. A lack of counselling support was noted as potentially impairing the individual's friends' ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when end-of-life entailed potential movement of the individual with intellectual disability to a new residential setting.