"The way I am treated is as if I am under my mother's care": qualitative study of patients' experiences of receiving hospice care services in South Africa.

BACKGROUND: Research on the patient experience of receiving palliative care across a number of settings is increasing, but the majority of these investigations are situated within the context of developed countries. There is limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice care. The present study explored the lived experience of attending hospice care facilities in South Africa to develop a bottom-up understanding from the perspectives of patients themselves. METHODS: A qualitative cross-sectional study was designed to examine how patients experienced receiving hospice care We conducted in-depth, semi-structured interviews with thirteen, purposively selected patients living with terminal cancer and receiving in-patient or day care palliative services from a hospice organisation in South Africa. We used inductive thematic analysis to analyse the data. RESULTS: We identified three themes that reflected a process of transformation that was experienced by participants during their engagement with the hospice services. The first theme describes participants' initial reluctance to be linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and dying. The second theme presents the perceived positive impact on patients' physical and psychosocial wellbeing which resulted from the highly valued interactions with staff and other patients as well as patients' engagement with creative activities. The final theme delineates the transformation of hospice into a second 'family' and 'home' and the restoration of an identity that expands beyond the 'sick' role. CONCLUSIONS: Receiving hospice care that sensitively attends to patients' psychosocial and physical needs helps people to re-create a sense of homeliness within the world, re-orient themselves toward a meaningful life and re-configure their relationship with self. Patient experience of receiving hospice care in South Africa does not appear dissimilar to that reported by patients in resource-rich countries, suggesting underlying commonalities. There is a need for raising awareness and educating the public about what palliative care can offer to those in need. Public health campaigns could help reduce the stigma attached to palliative care, deflect negative perceptions, and communicate the benefits for patients, families and communities in culturally sensitive ways.

Perceptions and practices of spiritual care among hospice physicians and nurses in a Taiwanese tertiary hospital: a qualitative study.

BACKGROUND: Spiritual care is frequently cited as a key component of hospice care in Taiwanese healthcare and beyond. The aim of this research is to gauge physicians and nurses' self-reported perspectives and clinical practices on the roles of their professions in addressing spiritual care in an inpatient palliative care unit in a tertiary hospital with Buddhist origins. METHODS: We performed semi-structured interviews with physicians and nurses working in hospice care over a year on their self-reported experiences in inpatient spiritual care. We utilized a directed approach to qualitative content analysis to identify themes emerging from interviews. RESULTS: Most participants identified as neither spiritual nor religious. Themes in defining spiritual care, spiritual distress, and spiritual care challenges included understanding patient values and beliefs, fear of the afterlife and repercussions of poor family relationships, difficulties in communication, the patient's medical state, and a perceived lack of preparedness and time to deliver spiritual care. CONCLUSIONS: Our study suggests that Taiwanese physicians and nurses overall find spiritual care difficult to define in practice and base perceptions and practices of spiritual care largely on patient's emotional and physical needs. Spiritual care is also burdened logistically by difficulties in navigating family and cultural dynamics, such as speaking openly about death. More research on spiritual care in Taiwan is needed to define the appropriate training, practice, and associated challenges in provision of spiritual care.

Pain talk in hospice care: a conversation analysis.

BACKGROUND: A large number of the hospice patients have been reported to be with symptoms of pain. Thus, managing the patient's pain is one aspect of hospice care provision. The delivery of pain care services could be facilitated through effective communication. However, little has been done to explore the interactional details of the delivery of pain care services in palliative care. METHODS: Conversation analysis is a useful method to explore the interactional details of interaction by hospice care providers and terminally ill patients. Using the method of Conversation Analysis (CA), this study aims to demonstrate how the hospice care provider employs different types of interactional practices to address the patient's pain concerns. The data showed in this study are collected from the Alexander St website http://ctiv.alexanderstreet.com , an educational resource presenting a large collection of psycho-therapeutic videos. RESULTS: In this study, an illustrative analysis is demonstrated to show the potential of conversation analysis for research on pain talk in palliative care. It has been shown that conversation analysis could contribute to unfolding the interactional details regarding "pain talk" in hospice care settings. Specifically, conversation analysis could provide a detailed description and interpretation of the conversational practices, which are used to construct hospice care provider participation in delivering pain talk. In addition, conversation analysis could also demonstrate the interactional resources by which patients disclose their experiences of physical or spiritual pain to the hospice care provider and the way how the hospice care provider responds to the patient's troubles talk or feelings talk. CONCLUSIONS: This study identifies five types of interactional resources which are used to deal with the patient's pain concerns in hospice care setting. A conversation analytical study of pain talk in hospice care could provide a turn-by-turn description of how the hospice care provider communicates with the terminally ill patient in terms of the patient's pain concerns. The findings in this study could inform how the hospice care provider initiates, delivers and develops a pain talk with the terminally ill patient effectively.

Compassion fatigue, watching patients suffering and emotional display rules among hospice professionals: a daily diary study.

BACKGROUND: Hospice workers are required to regularly use emotional regulation strategies in an attempt to encourage and sustain terminally ill patients and families. Daily emotional regulation in reaction to constantly watching suffering patients may be intensified among those hospice professionals who have high levels of compassion fatigue. The main object of this study was to examine the relationship between daily exposition to seeing patient suffering and daily emotional work, and to assess whether compassion fatigue (secondary traumatic stress and burnout) buffers this relationship. METHODS: We used a diary research design for collecting daily fluctuations in seeing patients suffering and emotional work display. Participants filled in a general survey and daily survey over a period of eight consecutive workdays. A total of 39 hospice professionals from two Italian hospices participated in the study. RESULTS: Multilevel analyses demonstrated that daily fluctuations in seeing patients suffering was positively related to daily emotional work display after controlling for daily death of patients. Moreover, considering previous levels of compassion fatigue, a buffering effect of high burnout on seeing patients suffering - daily emotional work display relationship was found. CONCLUSIONS: A central finding of our study is that fluctuations in daily witness of patients suffering are positively related to daily use of positive emotional regulations. Further, our results show that burnout buffers this relationship such that hospice professionals with high burnout use more emotional display in days where they recurrently witness patients suffering.

Hospices and palliative care for children: converging stories.

INTRODUCTION: Children's hospices offer support to children and their families according to a model that is quite different from adult hospices and has evolved in parallel with specialist paediatric palliative medicine services. SOURCES OF DATA: Published research, Together for Short Lives. AREAS OF AGREEMENT: The services hospices offer are highly valued by families. AREAS OF CONTROVERSY: It is not always clear that hospices can be described as 'specialist', which can make it difficult for hospices to negotiate appropriate commissioning arrangements with the statutory sector. GROWING POINTS: Children's palliative care generally is poorly developed compared with the adult specialty, and local providers should work with hospices to help redress the inequity that children face in accessing specialist palliative care. AREAS TIMELY FOR DEVELOPING RESEARCH: If hospices are to continue to be important providers of palliative care in children they must develop robust and fair relationships with local healthcare providers. That would be facilitated by development of a funding formula for children that properly acknowledges the part hospices already play in palliative care.

Prevalence of delirium in advanced cancer patients in home care and hospice and outcomes after 1 week of palliative care.

AIM: The aim of this study was to assess the prevalence of delirium in advanced cancer patients admitted to different palliative care services in Italy and possible related factors. The secondary outcome was to assess the changes of delirium after 1 week of palliative care. METHODS: A consecutive sample of patients was screened for delirium in period of 1 year in seven palliative care services. General data, including primary tumor, age, gender, concomitant disease, palliative prognostic score (PaP), and Karnofsky status, were collected. Possible causes or factors associated with delirium were looked for. The Edmonton Symptom Assessment Scale was used to assess physical and psychological symptoms and the Memorial Delirium Assessment Scale (MDAS) to assess the cognitive status of patients, at admission (T0) and 1 week after palliative care (T7). RESULTS: Of 848 patients screened, 263 patients were evaluated. Sixty-six patients had only the initial evaluation. The mean Karnofsky status was 34.1 (SD = 6.69); the mean PaP score at admission was 6.9 (SD = 3.97). The mean duration of palliative care assistance, equivalent to survival, was 38.4 days (SD = 48, range 2-220). The mean MDAS values at admission and after 1 week of palliative care were 6.9 (SD = 6.71) and 8.8 (SD = 8.26), respectively. One hundred ten patients (41.8%) and 167 patients (67.3%) had MDAS values ≥ 7 at admission and after 1 week of palliative care, respectively. Age, dehydration, cachexia, chemotherapy in the last three months, and intensity of drowsiness and dyspnea were independently associated with a MDAS > 7. A worsening of drowsiness, the use of opioids, and the use of corticosteroids were independently associated with changes of MDAS from T0 to T7. CONCLUSION: Although the prevalence of delirium seems to be similar to that reported in other acute settings, delirium tended to worsen or poorly responded to a palliative care treatment. Some clinical factors were independently associated with delirium. This information is relevant for decision-making when delirium does not change despite a traditional intervention. Continuous assessment of delirium should be performed in these settings to detect deterioration of cognitive function. Further studies should elucidate whether an earlier approach to palliative care would decrease the prevalence of delirium at a late stage of disease.

Advanced imaging and hospice use in end-of-life cancer care.

INTRODUCTION: Advanced imaging can inform prognosis and may be a mechanism to de-escalate unnecessary end-of-life care in patients with cancer. Associations between greater use of advanced imaging and less-aggressive end-of-life care in real-world practice has not been examined. METHODS: We conducted a retrospective analysis of SEER-Medicare data on patients who died from breast, lung, colorectal, or prostate cancer between 2002 and 2007. Hospital referral region (HRR)-level use of computerized tomography (CT), magnetic resonance imaging, and positron emission tomography was categorized by tertile of imaging use and correlated with hospice enrollment overall and late hospice enrollment using multivariable logistic regression. RESULTS: A total of 55,058 patients met study criteria. Hospice use ranged from 50.8% (colorectal cancer) to 62.1% (prostate cancer). In multivariable analyses, hospital referral regions (HRRs) with high rates of CT imaging were associated with lower odds of hospice enrollment (odds ratio, 0.80; 95% CI, 0.70-0.90) and late enrollment among those who did enroll (odds ratio, 1.49; 95% CI, 1.26-1.76). HRRs with the highest rates of CT use were predominantly located in the Midwest and Northeast and associated with higher percentage population of black patients (14.5 vs 5.6%), greater comorbidity (28.4 vs 23.7%), metropolitan residence (93.9 vs 78.5%), and less than high school education (26.4 vs 19.3%). CONCLUSION: In this population-based retrospective study, we did not observe evidence that overall and timely hospice are associated with higher rates of imaging near the end of life. An observed association between higher rates of imaging, particularly CT, may be explained in part by HRR-level differences in practice patterns and patient demographic characteristics. Further research is warranted to explore the ability of oncologic imaging to appropriately de-escalate care.

The Japan hospice and palliative evaluation study 4: a cross-sectional questionnaire survey.

BACKGROUND: Constant evaluation is important for maintaining and improving the quality of end-of-life care. We therefore conduct the fourth Japan Hospice and Palliative Evaluation Study (J-HOPE4) as a continuous evaluation study. In this present paper, we describe the design of J-HOPE4. The main purposes of J-HOPE4 are as follows:1) to evaluate the processes, structures, and outcomes of palliative care acute hospitals, palliative care units, and home hospice services; 2) to examine bereaved family members' self-reported psychosocial conditions, such as grief and depression as bereavement outcomes;3) to provide data to ensure and improve the quality of care provided by participating institutions via feedback based on the results from each institution; and 4) provide clinical and academic information concerning the implications of various issues in palliative care by conducting additional studies. METHODS: We will conduct a cross-sectional, anonymous, self-reported questionnaire survey. In total, 190 institutions will participate in this study, meaning that 12,000 bereaved family members will be sent a questionnaire. DISCUSSION: This is one of the largest cross-sectional surveys involving hospice and palliative care, both in Japan and worldwide. Because this study will have a large sample size, the findings are expected to be generalizable to other settings.

Impact of admission to hospice on pain intensity and type of pain therapies administered.

PURPOSE: The primary aim of this study was to evaluate pain intensity changes in patients admitted to a hospice. The secondary objective was to evaluate whether these changes in pain were accompanied by modifications in therapies and drugs used to treat pain. PATIENTS AND METHODS: This retrospective study included 96 patients admitted to a hospice for a minimum of 7 days who received pain therapy. An 11-point (0-10) numerical rating scale (NRS) was used to assess pain on a daily basis. A repeated measures analysis of variance was performed to evaluate pain intensity changes over time. RESULTS: Mean ± SD pain NRS values of the entire group were 2.58 ± 2.61 on day 1 and 1.40 ± 1.72 on day 7 (P = 0.002). Restricting the analysis to patients with moderate to severe pain at the time of hospice admission, results were even more significant. In fact, mean ± SD pain NRS was 5.51 ± 1.24 for patients with pain ≥4 at admission and 1.76 ± 1.91 for the same patients after 7 days (P < 0.001). A significant increase in the number of patients receiving morphine was observed from day 1 to day 7 (24 to 41, respectively, P = 0.001) and in those receiving drugs via parenteral routes (subcutaneous or intravenous) from 10 to 27 (P = 0.002) CONCLUSIONS: Admission to a hospice and the hospice environment led to a significant reduction in reported pain intensity for the patients included in this study, mainly those with moderate to severe pain at the time of admission. This decrease in pain was accompanied by a significant increase in the use of morphine, especially via parenteral routes, but not by a higher mean equivalent daily dose of oral morphine per patient.

Patients' perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study.

BACKGROUND: Patients' perceptions of care quality within and across settings are important for the further development of palliative care. The aim was to investigate patients' perceptions of palliative care quality within settings, including perceptions of care received and their subjective importance, and contrast palliative care quality across settings. METHOD: A cross-sectional study including 191 patients in late palliative phase (73 % response rate) admitted to hospice inpatient care, hospice day care, palliative units in nursing homes, and home care was conducted, using the Quality from the Patients' Perspective instrument-palliative care (QPP-PC). QPP-PC comprises four dimensions and 12 factors; "medical-technical competence" (MT) (2 factors), "physical-technical conditions" (PT) (one factor), "identity-orientation approach" (ID) (4 factors), "sociocultural atmosphere" (SC) (5 factors), and three single items (S); medical care, personal hygiene and atmosphere. Data were analysed using paired-samples t-test and analysis of covariance while controlling for differences in patient characteristics. RESULTS: Patients' perceptions of care received within settings showed high scores for the factors and single items "honesty" (ID) and "atmosphere" (S) in all settings and low scores for "exhaustion" (MT) in three out of four settings. Patients' perceptions of importance scored high for "medical care" (S), "honesty" (ID), "respect and empathy" (ID) and "atmosphere" (S) in all settings. No aspects of care scored low in all settings. Importance scored higher than perceptions of care received, in particular for receiving information. Patients' perceptions of care across settings differed, with highest scores in hospice inpatient care for the dimensions; ID, SC, and "medical care" (S), the SC and "atmosphere" (S) for hospice day care, and "medical care" (S) for palliative units in nursing homes. There were no differences in subjective importance across settings. CONCLUSION: Strengths of services related to identity-orientation approach and a pleasant and safe atmosphere. Key areas for improvement related to receiving information. Perceptions of subjective importance did not differ across settings, but perceptions of care received scored higher in more care areas for hospice inpatient care, than in other settings. Further studies are needed to support these findings, to investigate why perceptions of care differ across settings and to highlight what can be learned from settings receiving high scores.

Home care for children with multiple complex chronic conditions at the end of life: The choice of hospice versus home health.

Families desire to bring their children home at end of life, and this creates a variety of unique care needs at home. This study analyzed the child and family factors associated with hospice versus home health care use in the last year of life among children with multiple complex chronic conditions. Using the Andersen Behavioral Healthcare Utilization Model, the predisposing, enabling, and need factors of the child and family were shown to be significant predictors of hospice and home health care use. Hospice and home health care have advantages, and families may wish to use the service that best fits their needs.

Quality of death among hospice decedents: Proxy observations from a survey of community-dwelling adults in the contiguous United States.

This study examines hospice service experience and quality of death. A survey of 123 community-dwelling adults in the United States found that physical comfort, pain-free, and spiritual peace were more important to respondents reporting a personal experience with hospice. A "good death" was associated with older patients who died at home, and respondent satisfaction with hospice service. A "good death" was mapped as 29 nodes and 79 links using semantic network analysis. Three subjects (patient, family, hospice), three timeframes (end-of-life, moment of dying, death), and four central causes (home, peaceful, pain-free, and expected) were identified.

Unique challenges of hospice for patients with heart failure: A qualitative study of hospice clinicians.

BACKGROUND: Patients with heart failure have end-of-life care needs that may benefit from hospice care. The goal of this descriptive study was to understand hospice clinicians' perspectives on the unique aspects of caring for patients with heart failure to inform approaches to improving end-of-life care. METHODS: This qualitative study explored experiences, observations, and perspectives of hospice clinicians regarding hospice care for patients with heart failure. Thirteen hospice clinicians from a variety of professional disciplines and clinical roles, diverse geographic regions, and varying lengths of time working in hospice participated in semistructured interviews. Through team-based, iterative qualitative analysis, we identified 3 major themes. RESULTS: Hospice clinicians identified 3 themes regarding care for patients with heart failure. First, care for patients with heart failure involves clinical complexity and a tailored approach to cardiac medications and advanced cardiac technologies. Second, hospice clinicians describe the difficulty patients with heart failure have in trusting hospice care due to patient optimism, prognostic uncertainty, and reliance on prehospice health care providers. Third, hospice clinicians described opportunities to improve heart failure-specific hospice care, highlighting the desire for collaboration with referring cardiologists. CONCLUSIONS: From a hospice clinician perspective, caring for patients with heart failure is unique compared with other hospice populations. This study suggests potential opportunities for hospice clinicians and referring providers who seek to collaborate to improve care for patients with heart failure during the transition to hospice care.

Correlates of a good death and the impact of hospice involvement: findings from the national survey of households affected by cancer.

PURPOSE: Knowing how to improve the dying experience for patients with end-stage cancer is essential for cancer professionals. However, there is little evidence on the relationship between clinically relevant factors and quality of death. Also, while hospice has been linked with improved outcomes, our understanding of factors that contribute to a "good death" when hospice is involved remains limited. This study (1) identified correlates of a good death and (2) provided evidence on the impact of hospice on quality of death. METHODS: Using data from a survey of US households affected by cancer (N = 930, response rate 51 %), we fit regression models with a subsample of 158 respondents who had experienced the death of a family member with cancer. Measures included quality of death (good/bad) and clinically relevant factors including: hospice involvement, symptoms during treatment, whether wishes were followed, provider knowledge/expertise, and compassion. RESULTS: Respondents were 60 % female, 89 % White, and averaged 57 years old. Decedents were most often a respondent's spouse (46 %). While 73 % of respondents reported a good death, Hispanics were less likely to experience good death (p = 0.007). Clinically relevant factors, including hospice, were associated with good death (p < 0.05)--an exception being whether the physician said the cancer was curable/fatal. With adjustments, perceptions of provider knowledge/expertise was the only clinical factor that remained associated with good death. CONCLUSIONS: Enhanced provider training/communication, referrals to hospice and greater attention to symptom management may facilitate improved quality of dying. Additionally, the cultural relevance of the concept of a "good death" warrants further research.

An evaluation of Hospice New Zealand's interprofessional fundamentals of palliative care program at a single site.

OBJECTIVE: To study the efficacy of two modules within the Fundamentals of Palliative Care educational program within a single site. The modules included the concepts of Essence of Palliative Care and Pain and Symptom Management. METHOD: A mixed-methods approach incorporating questionnaires and interviews was implemented. Two phases were included. First, a purposive sample of 22 workshop participants were invited to fill out evaluation questionnaires on two occasions (immediately after the session and four weeks as follow-up). Second, semistructured interviews were conducted and interviews transcribed and analyzed using content analysis. RESULTS: Participants felt they gained further knowledge in palliative patient management and refined their clinical practice. The questionnaire feedback revealed that the Essence of Palliative Care module provided a breadth of content but had difficulties in capturing the diverse needs of all attendees. The Pain and Symptom Management module was perceived as more technical and clinical, and this suited health professionals with an informed background. The interviewee feedback (three nurses, three nurse educators, one manager) suggested that the learning outcomes were comprehensive but needed to be more sensitive to learner needs. The teaching and learning activities were perceived as useful and encouraging. However, learners came from diverse contexts, and it was difficult to suit all learning preferences. Assessment and evaluation processes required more psychometric attention. SIGNIFICANCE OF RESULTS: The piloting of the Fundamentals of Palliative Care program at this single site was of benefit and relevance to participants in their clinical practice. Overall, participants felt the course was useful to them and that they were able to gain valuable knowledge and skills. Several areas could be refined to optimize the learning, including: (1) knowing attendee learning potentialities and prior experiences, (2) considering a more inclusive and formal assessment process, (3) creating diverse mechanisms for disseminating knowledge and skills, and (4) improving methods of evaluation.

The EAPC framework on palliative sedation and clinical practice--a questionnaire-based survey in Germany.

BACKGROUND: Palliative sedation (PS) can be offered to patients with intolerable symptom burden refractory to comprehensive palliative care (PC) treatment. Little is known about the daily practice of using PS in German specialized PC institutions in the context of existing national and international recommendations. PURPOSE: This study's primary objective is to explore how PS is used in German specialized PC institutions with reference to the EAPC framework. METHODS: The heads of all palliative care units, hospices, specialized palliative home care teams, and specialized pediatric palliative home care teams listed in the official address registers were invited to take part in a questionnaire survey about the clinical practice of PS in their institution. RESULTS: Considerable differences of the frequency of PS exist between institutions. The estimated frequency of PS ranges from 0 to 80 % of all patients treated per year (mean 6.7 %). Some PC specialists report to discuss PS as treatment option for every patient they encounter. Specific evaluation and documentation tools are rare. Of the study participants, 36.2 % are not familiar with international and national recommendations. CONCLUSION: Many differences exist in frequency and clinical handling of PS in Germany. Implementation of international and national recommendations into clinical practice remains inconsistent.

Residential hospice environments: evidence-based architectural and landscape design considerations.

The residential hospice care movement is increasingly accepted and supported globally, and yet, unfortunately, the amount of literature on best practices in the planning and design of residential hospice facilities and adjacent outdoor spaces remains relatively small. This paper reports on a compendium of architectural and landscape design considerations that reflect the fundamental dimensions of the residential hospice experience: site and context, arrival spaces, communal and private spaces of the residential milieu, transitional spaces, and nature connectivity. Additionally, key staffing and administrative ramifications of this built-environment compendium are addressed, as are prognostications and challenges for the future.

End-of-life experiences and expectations of Africans in Australia: cultural implications for palliative and hospice care.

The ageing and frail migrants who are at the end of life are an increasing share of migrants living in Australia. However, within such populations, information about end-of-life experiences is limited, particularly among Africans. This article provides some insights into the sociocultural end-of-life experiences of Africans in Australia and their interaction with the health services in general and end-of-life care in particular. It provides points for discussion to consider an ethical framework that include Afro-communitarian ethical principles to enhance the capacity of current health services to provide culturally appropriate and ethical care. This article contributes to our knowledge regarding the provision of culturally appropriate and ethical care to African patients and their families by enabling the learning of health service providers to improve the competence of palliative care systems and professionals in Australia. Additionally, it initiates the discussion to highlight the importance of paying sufficient attention to a diverse range of factors including the migration history when providing palliative and hospice care for patients from African migrant populations.