Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses. The positive effects of caregiving constitute a newly emerging outcome that has been relatively unexplored in the pediatric literature, and yet they may play an important role in contributing to the satisfaction and well-being of the healthcare professionals who care for children who have a life-limiting illness.

This paper reports the results of a secondary analysis of qualitative interview transcripts that explored the experiences of hospital-based pediatric healthcare providers caring for children with varied life-limiting illnesses. In-depth qualitative interviews were conducted with 25 healthcare professionals (9 social workers, 8 nurses, and 8 physicians). The majority of participants were women (80%), with an age range between 20 and 60 years, and most (84%) had the experience of caring for more than 15 dying children. Thematic analysis was conducted using interpretive description and constant comparison.

Every healthcare professional interviewed experienced personal growth as a result of their providing care for dying children. Three dimensions of personal growth were most consistently reported: (1) new or altered life perspectives, (2) enhanced personal resources, and (3) benevolence.

A deeper understanding of the phenomenon of personal growth could help healthcare organizations to implement innovative approaches that would counterbalance compassion fatigue, and thereby enhance both healthcare provider well-being and child and family outcomes.

As the aging population faces complex end-of-life issues, we studied the intervals between long-term care admission and advance directive completion, and between completion and death. We also sought to determine the interdisciplinary team's compliance with documented wishes.

A cross-sectional study of 182 long-term care residents in two facilities with and without completed medical orders for life-sustaining treatment (MOLST) in the New York Metropolitan area was conducted. Demographic variables included: gender, age, ethnicity, and diagnosis. Measures included: admission date, MOLST execution date, and date of death. Resident advance directive documentation was compared with clinical intervention at time of death, including intubation and mechanical ventilation.

Of the residents studied, 68.7% were female, 91% were Caucasian and 91.8% were ≥ 65 years of age (mean age: 83). The median time from admission to MOLST signing was 48 days. Median time from admission to MOLST signing for Caucasians was 21 days; for non-Caucasians was 229 days. Fifty-two percent of MOLST were signed by children, and 24% by residents. Of those with signed forms, 25% signed on day of admission, 37% signed within 7 days, and 47% signed within 21 days. Only 3% of residents died the day their MOLST was signed, whereas 12% died within a week, and 22% died within 30 days. Finally, among the 68 subjects who signed a MOLST and died, 87% had their wishes met.

In this era of growing time constraints and increased regulations, medical directors of long-term care facilities and those team members caring for residents urgently need a clear and simple approach to the goals of care for their residents. The MOLST is an ideal tool in caring for older adults at the end of life, providing concrete guidance, not only with regard to do not resuscitate (DNR) and do not intubate (DNI) orders, but also for practical approaches to daily care for the interdisciplinary team.

This study addressed factors physicians employ in their communication of a terminal diagnosis and a hospice referral to Hispanic patients.

The research method used was an exploratory qualitative in-depth semi-structured interview with thematic analysis. The interviews were with ten physicians in Central Florida. The interviews were conducted in Spanish and/or English with physicians who serve terminally ill Hispanic patients.

The findings provide vital information on factors that impact communication of diagnosis and hospice referral. Themes emerged relating to role of family members and end-of-life decision-making. Language barriers and limited knowledge of cultural factors and beliefs impacted communication related to end-of-life decisions. Gaps in training and education for physicians were also identified.

These results suggest that discussing end-of-life issues with the diverse category of Hispanic patients and families will be enhanced by eliminating language barriers, increased understanding of the role of family members, and knowledge of cultural factors and beliefs related to end-of-life decisions.

Delirium is a common complication in palliative care patients, especially in the terminal phase of the illness. To date, evidence regarding risk factors and prognostic outcomes of delirium in this vulnerable population remains sparse.

In this prospective observational cohort study at a tertiary care center, 410 palliative care patients were included. Simple and multiple logistic regression models were used to identify associations between predisposing and precipitating factors and delirium in palliative care patients.

The prevalence of delirium in this palliative care cohort was 55.9% and reached 93% in the terminally ill. Delirium was associated with prolonged hospitalization (p < 0.001), increased care requirements (p < 0.001) and health care costs (p < 0.001), requirement for institutionalization (OR 0.11; CI 0.069–0.171; p < 0.001), and increased mortality (OR 18.29; CI 8.918–37.530; p < 0.001). Predisposing factors for delirium were male gender (OR 2.19; CI 1.251–3.841; p < 0.01), frailty (OR 15.28; CI 5.885–39.665; p < 0.001), hearing (OR 3.52; CI 1.721–7.210; p < 0.001), visual impairment (OR 3.15; CI 1.765–5.607; p < 0.001), and neoplastic brain disease (OR 3.63; CI 1.033–12.771; p < 0.05). Precipitating factors for delirium were acute renal failure (OR 6.79; CI 1.062–43.405; p < 0.05) and pressure sores (OR 3.66; CI 1.102–12.149; p < 0.05).

Our study identified several predisposing and precipitating risk factors for delirium in palliative care patients, some of which can be targeted early and modified to reduce symptom burden.

Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context.

Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings.

Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children.

The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.

Our aim was to examine the characteristics of delirium in the severely medically ill cancer population on the basis of sociodemographic and medical variables, delirium severity, and phenomenology, as well as severity of medical illness.

All subjects in the database were recruited from psychiatric referrals at Memorial Sloan Kettering Cancer Center (MSKCC). Sociodemographic and medical variables, as well as the Karnofsky Performance Status (KPS) scale and Memorial Delirium Assessment Scale (MDAS) scores were recorded at baseline. Subsequently, these variables were analyzed with respect to the severity of the medical illness.

Out of 111 patients, 67 qualified as severely medically ill. KPS scores were 19.7 and 30.7 in less severe illness. There were no significant differences with respect to age, history of dementia, and MDAS scores. Although the severity of delirium did not differ, an increased frequency and severity of consciousness disturbance, disorientation, and inability to maintain and shift attention did exist. With respect to etiologies contributing to delirium, hypoxia and infection were commonly associated with severe illness. In contrast, corticosteroid administration was more often associated with less severe illness. There were no differences with respect to opiate administration, dehydration, and CNS disease, including brain metastasis.

Delirium in the severely medically ill cancer population has been characterized by an increased disturbance of consciousness, disorientation, and an inability to maintain and shift attention. However, the severity of illness did not predict severity of delirium. Furthermore, hypoxia and infection were etiologies more commonly associated with delirium in severe illness, whereas the administration of corticosteroids was associated with less severe illness.

Reliable and validated instruments are needed in order to study the desire for hastened death (DHD). As there is no instrument in the German language to measure DHD, our aim was to validate a German version of the Schedule of Attitudes Toward Hastened Death (SAHD–D).

The SAHD was translated following guidelines promulgated by the European Organization for Research and Treatment of Cancer (EORTC). In eligible patients (clinical situation adequate, MMSE ≥21), the following instruments were employed: a symptom checklist (HOPE), the HADS–D (Hospital Anxiety and Depression Scale), the EORTC-QLQ-PAL15, and the SAHD–D, as well as an external estimation of DHD provided by the attending physician. A high level of DHD was defined as the mean plus one standard deviation (SD).

Of the 869 patients assessed, 92 were eligible for inclusion (66% females, mean age of 64.5 years). The SAHD–D total score ranged from 0 to 18, with a mean of 5 and a standard deviation (SD) of 3.7. A high level of DHD was found in 20% (n = 19). For discriminant validity, significant correlations were found between the SAHD–D and depression (rrho = 0.472), anxiety (rrho = 0.224), and clinical state (rrho = 0.178). For criterion validity, the external estimate of DHD showed a low significant correlation with patient score (rrho = 0.290). Factor analysis of the SAHD–D identified two factors.

Validation of the SAHD–D illustrated good discriminant validity, confirming that a desire to hasten death is a construct separate from depression, anxiety, or physical state. The unidimensionality of the SAHD could not be reproduced. Our findings support the multifactorial interdependencies on DHD and suggest that the SAHD–D should be refined by considering actual wishes, general attitudes, and options of patients.

To explore how patients experience being in the hospital environment and the meaning they assign to the environment during serious illness.

A qualitative study design was applied, and the data analysis was inspired by Ricoeur's phenomenological-hermeneutic theory of interpretation. Data were collected through multiple qualitative interviews combined with observations at a teaching hospital in Denmark from May to September 2011. A total of 12 patients participated.

The findings showed that the hospital environment has a strong impact on patients' emotions and well-being. They reported that aesthetic decorations and small cozy spots for conversation or relaxation created a sense of homeliness that reinforced a positive mood and personal strength. Furthermore, being surrounded by some of their personal items or undertaking familiar tasks, patients were able to maintain a better sense of self. Maintaining at least some kind of familiar daily rhythm was important for their sense of well-being and positive emotions.

The results stress the importance of an aesthetically pleasing and homelike hospital environment as part of palliative care, since the aesthetic practice and a sense of homeliness strengthened patients' experiences of well-being, relief, and positive emotions while in a vulnerable situation. Such knowledge could encourage the development of new policies regarding appropriate care settings, which in turn could result in overall improved care during serious illness.

Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs).

Self-report survey mailed to a stratified random sample of 1,680 Australian GPs was used.

Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring >60% of their patients for SPC (p = 0.014); and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)); future need for symptom control (69% vs. 59%, ns) and uncontrolled physical symptoms (63% vs. 54%, ns). Reasons for not referring were: doctor's ability to manage symptoms (62% vs. 68%, ns) and the absence of symptoms (29% vs. 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available; agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met.

Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.

Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some—though not all—caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support.

This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3–9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed.

The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the “personal” character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support.

Systematic pre-bereavement planning and careful communication about the services offered by palliative care bereavement support centers may improve receipt of support among bereaved family caregivers in need.

A major barrier to the adoption of an approach that integrates spirituality into palliative care is the lack of preparation/education of healthcare professionals on the topic. This study aimed to evaluate the effectiveness of a continuing education activity for healthcare professionals addressing spirituality and spiritual care provision to patients and families within palliative care.

We conducted an intervention study using a quantitative pre- and posttest design in a convenience sample of 52 healthcare professionals. Participants completed the Brazilian version of the Spiritual Care Competence Scale before and after attending a four-hour continuing education activity.

Significant differences were observed between pre- and postintervention scores in the following dimensions: assessment and implementation of spiritual care, professionalization and improving the quality of spiritual care, personal support, and patient counseling (p < 0.001), and referral (p = 0.003).

The results of this study provide preliminary evidence of a positive effect of this educational intervention on the development of the competences needed by healthcare professionals to deliver a comprehensive approach centered on the patient/family, which includes attention to spirituality and spiritual care in the decision-making process.

In Korea, patients with terminal cancer are often caught out of the loop in end-of-life (EoL) care discussions. Healthcare professionals also have difficulty engaging in such communication in a variety of healthcare contexts. Therefore, the objective of our study was to develop a communication model for EoL care decision making compatible with the clinical environment in Korea.

Using focus-group interview methodology, participants included eight doctors and five nurses who provide EoL care for terminal cancer patients in acute hospital settings or hospice care facilities in various provinces of Korea.

Five themes emerged regarding EoL care discussion, which included: (1) timing, (2) responsible professionals, (3) disclosure of bad news, (4) content areas of EoL care discussion, and (5) implementing strategies for EoL care discussions. These themes were based on development of a communication algorithm for EoL discussion among patients with terminal cancer. A structural communication step for delivery of a terminal prognosis was specified at the phase of disclosure of bad news: beginning with determination of a patient's decision-making capability, followed by a patient's perception of his/her condition, a patient's wish to know, family dynamics, and a patient's and/or family's readiness for EoL discussions.

The proposed context-oriented communication algorithm could provide a helpful guideline for EoL communication and, accordingly, facilitate meaningful improvements in EoL care in Korean clinical practice. The feasibility of this algorithm has not yet been determined, and its validation in a larger sample of patients with terminal cancers, using a quantitative research methodology, is a priority of research.

Our objective was to evaluate long-term altered appearance, distress, and body image in posttreatment breast cancer patients and compare them with those of patients undergoing active treatment and with general population controls.

We conducted a cross-sectional survey between May and December of 2010. We studied 138 breast cancer patients undergoing active treatment and 128 posttreatment patients from 23 Korean hospitals and 315 age- and area-matched subjects drawn from the general population. Breast, hair, and skin changes, distress, and body image were assessed using visual analogue scales and the EORTC BR–23. Average levels of distress were compared across groups, and linear regression was utilized to identify the factors associated with body image.

Compared to active-treatment patients, posttreatment patients reported similar breast changes (6.6 vs. 6.2), hair loss (7.7 vs. 6.7), and skin changes (5.8 vs. 5.4), and both groups had significantly more severe changes than those of the general population controls (p < 0.01). For a similar level of altered appearance, however, breast cancer patients experienced significantly higher levels of distress than the general population. In multivariate analysis, patients with high altered appearance distress reported significantly poorer body image (–20.7, CI95% = –28.3 to –13.1) than patients with low distress.

Posttreatment breast cancer patients experienced similar levels of altered appearance, distress, and body-image disturbance relative to patients undergoing active treatment but significantly higher distress and poorer body image than members of the general population. Healthcare professionals should acknowledge the possible long-term effects of altered appearance among breast cancer survivors and help them to manage the associated distress and psychological consequences.

Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.

Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.

Patients' experiences were represented by three themes: “safe at home,” “facilitated and more honest communication,” and “feeling like a unit of care.” Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.

Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.