Context: Evidence-based resource allocation is receiving increasing attention as we strive for equity, transparency, and cost-effectiveness across health care. In the context of finite resources, which of our patients with terminal illness should be prioritized for urgent palliative care?
Objectives: To develop the scoring system for the novel Responding to Urgency of Need in Palliative Care triage tool.
Methods: Online international discrete choice experiment involving palliative care clinicians to establish the relative importance of seven key attributes of palliative care triage identified during an earlier qualitative study.
Results: Participants (n = 772) were mainly female (79.9%) with a decade of clinical experience. All attributes contributed significantly (all P-values < 0.001) and independently to clinician assessment of urgency. This study found physical suffering (coefficient 3.45; 95% confidence interval: 3.24 to 3.66) was the most important determinant of urgency, followed by imminent dying (coefficient 1.56; 1.43 to 1.69), psychological suffering (coefficient 1.49; 1.37 to 1.60), caregiver distress (coefficient 1.47; 1.35 to 1.59), discrepancy between care needs and care arrangements (coefficient 1.14; 1.02 to 1.26), mismatch between current and desired site of care (coefficient 0.94; 0.85 to 1.03), and unmet communication needs (coefficient 0.84; 0.76 to 0.92).
Conclusion: Palliative care triage, which is complex and contextual, has been made more transparent through this discrete choice experiment. The Responding to Urgency of Need in Palliative Care triage tool provides an important step toward evidence-based assessment of priority for palliative care. Further research is underway to determine the validity of the tool in clinical practice and its impact on patient and caregiver outcomes.
Hospice volunteers are a high-risk group for anxiety and depression owing to their frequent exposure to patients at the end of life and their subsequent deaths. Resilience is known to be a powerful factor that affects the occurrence of anxiety and depression; however, research on this subject is scarce. We investigated the relationship of resilience with anxiety or depression in hospice volunteers. A total of 145 volunteers were included in the analysis. Participants completed self-reported scales, including the Korean version of the Connor-Davidson Resilience Scale, the State-Trait Anxiety Inventory, Patient Health Questionnaire-9, and the Professional Quality of Life Scale version 5. Pearson correlation coefficients were analyzed to identify the relationship of compassion satisfaction and compassion fatigue with anxiety or depression. A PROCESS macro mediation analysis was used to investigate the mediation effects of compassion satisfaction and compassion fatigue on the relationship between resilience and anxiety or depression. There were significant associations of compassion satisfaction and compassion fatigue with anxiety and depression. The relationship between resilience and anxiety/depression was mediated by compassion fatigue, which had indirect effects on anxiety and depression. Efforts to reduce compassion fatigue and increase resilience could help prevent anxiety and depression in hospice volunteers.
This study aimed to identify the relationships of perception of hospice and palliative care with emotional intelligence and cognitive empathy in nursing students. The participants were 458 nursing students. Data were collected using structured questionnaires and analyzed with Pearson correlation coefficients, independent-samples t test, and binary logistic regression. Perception of hospice and palliative care was significantly and positively correlated with emotional intelligence (r = 0.224, P < .001) and cognitive empathy (r = 0.311, P < .001). Mean score differences of perception of hospice and palliative care by emotional intelligence and cognitive empathy were statistically significant (t = -3.973, P < .001; t = -4.109, P < .001, respectively). Logistic regression yielded an odds ratio of 1.860 (P < .001; 95% confidence interval, 1.283-2.698) between the perception of hospice and palliative care and emotional intelligence and an odds ratio of 2.028 (P < .001; 95% confidence interval, 1.394–2.951) between the perception of hospice and palliative care and cognitive empathy. Emotional intelligence and cognitive empathy should be cultivated to raise nursing students' perception of hospice and palliative care and must be included when developing related curricula and extracurricular programs.
Dans l’histoire de notre société, les progrès de la médecine, sur fond de paternalisme hippocratique, conduisent à des avancées considérables comme à des expérimentations de l’homme sur l’homme. Après le code de Nuremberg en 1947, l’autonomie s’impose. Le profane, en particulier le patient, revendique sa place au sein de la décision médicale. En découlent des conflits de valeurs entre acharnement thérapeutique et euthanasie. L’auteur explore ici la démarche éthique clinique menée en unité de soins palliatifs qui tente de répondre à certaines situations complexes en fin de vie. Par une approche sociologique et une introduction à la recherche, nous croisons le vécu de huit acteurs. L’un des points forts qui ressort est une dysrythmie temporelle, entre unicité et routine, temps et durée, que la démarche éthique tente de synchroniser.
BACKGROUND: Safeguarding the dignity of patients at the end of life is a key objective in palliative care practice in Denmark. The concept of dignity and how it influences a dying persons' quality of life is thus influential in end-of-life care at hospices. However, what is meant by dignity, how dignity is understood and practiced by healthcare professionals in Danish hospices, and whether this relates to the patients' understandings and needs concerning dignity remains unanswered.
AIM: The aim of this study was to explore and improve dignity in care through an action research study with patients and hospice staff at two different hospices in Denmark. This was done by exploring how patients and healthcare professionals expressed their understandings and needs concerning dignity and involving participants in the research process with the goal of improving dignity in care.
METHODS: An action research method with reflection-of-praxis and action-in-praxis was applied. It was combined with methods of semi-structured individual interviews with twelve patients, five staff and nine focus-group interviews with staff.
RESULTS: Three themes emerged from the analysis of data. The themes were as follows: (1) being understood, (2) contributing and (3) holistic care. Deeper analysis indicated that staff understandings of dignity mostly focused on preserving patients' autonomy, whereas patients expressed needs for relational and spiritual aspects of dignity. Staff were mostly concerned about preserving patients' autonomy when providing dignity in care, however, through the action-in-praxis they increased their awareness on their own praxis and patients' needs and understanding concerning dignity. The theoretical model on dignity presented in the study also worked as a map to guide staffs' reflections on dignity in praxis and facilitated a broader focus on supporting and caring for patients' dignity in care. We believe this study has improved dignity in care at the two hospices involved in the study.
OBJECTIVES: Delirium is common and distressing in palliative care settings. This survey aims to describe current practice regarding delirium identification in specialist palliative care units (SPCU), such as inpatient hospices, in the UK.
METHODS: An 18-item anonymous online survey was distributed by Hospice UK to their network of clinical leads (n=223), and to their research mailing list (n=228). The survey was also sent to the chair of the Hospice UK executive clinical leads forum for direct dissemination to forum representatives (n=20). Clinical leads and forum representatives were asked to distribute the survey to healthcare staff in their SPCUs.
RESULTS: 220 SPCU staff (48% nurses; 31% doctors; 10% healthcare assistants) completed the survey. Approximately half reported using clinical judgement alone to screen (97/204; 48%) and/or diagnose (124/220; 56%) delirium. Over a third used an assessment tool to screen for delirium (76/204; 37%). The majority (150/220; 68%) reported screening in response to clinical symptoms, while few reported routine on-admission (11/220; 5%) or daily-during-admission (12/220; 6%) screening. Most respondents had received some training on delirium (137/220; 62%). However, 130/220 (59%) said their SPCU did not have a training programme for delirium screening and only 79/220 (36%) reported that their SPCU had delirium clinical guidelines. The main barriers to routine screening included: lack of delirium training, lack of guidelines and complexity of patient's conditions.
CONCLUSION: There is variation in practice for delirium screening and diagnosis in SPCUs. Clinical guidelines for delirium, including consensus on which screening tools to use, are needed for this setting.
OBJECTIVE: This study explored how built space plays out in palliative care, focusing on spatial aspects that could support or hamper patients', relatives' and caregivers' well-being.
METHODS: This study was conducted in a freestanding small-scale hospice combining a residential part for eight guests with a day-care part for groups of about five persons. Observations were combined with semistructured, individual interviews with eight guests (sometimes accompanied by relatives) and three focus-group interviews with staff, volunteers and relatives. All interviews were audio-recorded and transcribed verbatim. Data were analysed based on the Qualitative Analysis Guide of Leuven.
RESULTS: The most important spatial aspects that impact on physical and social well-being in palliative care turned out to be the building scale and physical proximity. The small-scale setting counters the (often negative) association of palliative care with hospital environments. When the medical condition of the guest allows, it makes communal or outdoor spaces reachable, which enhances emotional and social well-being. In worse conditions, it still makes that care and nature are always nearby. The compactness of communal spaces intensifies social contacts.
CONCLUSIONS: The building scale and physical proximity play out in the relationship between the building and its surroundings, between the residential and the day-care parts and among people within the building. Future research could investigate to what extent these spatial aspects are relevant in more conventional palliative care units or even in general hospital wards.
This case report describes a pediatric hospice provider in Scotland and their experience implementing a telehospice program in response to COVID-19. Children's Hospices Across Scotland (CHAS) is the only provider of pediatric hospice care in the entire of Scotland, and we describe their experience offering pediatric telehospice. CHAS had strategically planned to implement telehospice, but COVID-19 accelerated the process. The organization evaluated its pediatric clinical and wrap-around hospice services and rapidly migrated them to a virtual environment. They creatively added new services to meet the unique needs of the entire family, who were caring for a child at end of life during COVID-19. CHAS's experience highlights the planning and implementing processes of telehospice with key lessons learned, while acknowledging the challenges inherent in using technology to deliver hospice care.
A challenging issue in contemporary Canadian Medicare is the evolution of end-of-life care. Utilizing data from the 2016 and 2018 Health Care in Canada (HCIC) surveys, this paper compares the support and priorities of the adult public (n = 1500), health professionals (n = 400), and administrators (n = 100) regarding key components for end-of-life care just prior to and post legalization of medical assistance in dying (MAiD) in Canada. In 2016 and 2018, the public, health professionals and administrators strongly supported enhanced availability of all proposed end-of-life care options: pain management, hospice and palliative care, home care supports, and medically assisted death. In 2018, when asked which option should be top priority, the public rated enhanced medically assisted death first (32%), followed by enhanced hospice and palliative care (22%) and home care (21%). Enhanced hospice and palliative care was the top priority for health professionals (33%), while administrators rated enhanced medically assisted death first (26%). Despite legalization and increasing support for MAiD over time, health professionals have increasing fear of legal or regulatory reprisal for personal involvement in medically assisted death, ranging from 38% to 84% in 2018, versus 23% to 42% in 2016. While administrators fear doubled since 2016 (40%-84%), they felt the necessary system supports were in place to easily implement medically assisted death. Optimal management of end-of-life care is strongly supported by all stakeholders, although priorities for specific approaches vary. Over time, professionals increasingly supported MAiD but with a rising fear of legal/regulatory reprisal despite legalization. To enhance future end-of-life care patterns, continued measurement and reporting of implemented treatment options and their system supports, particularly around medically assisted death, are needed.
All of us, without exception, must sooner or later face the inevitability of death. However, as comparative studies of different cultures show, the idea that death is something to be feared, denied or hidden away is far from universal. Undeniably, many people do not have a ‘good’ death, and those with a terminal illness experience suffering, pain, and even despair, a sense of dignity lost. But is this the only possible narrative? In 2014, and again in 2019, I had the opportunity to spend time as an observer in a palliative care unit. I hold a BA, a PhD in Humanities, and since 2014 my research has focused on end of life care. Even though I work in a clinical lab, the day to day activity in a clinical setting is a distant reality. However, at no other point in my life have I experienced a stronger sense of ‘reality’—the reality of life, of death, of what it means to love someone, of one’s own life entwined with that of another person. Witnessing the end-of-life can be a profound experience—what Kant would call the sublime—and it can unsettle, in a good way, anyone who comes to encounter it while unaware of its potential. My aim in this paper is to explain why I believe that the end of life in a palliative care context is an opportunity to experience the sublime and an authentic transformative experience. Finally, I describe four short stories to better understand what the experience of the sublime might be in the context of clinical practice.
BACKGROUND: Acute hospitalization is a frequent reason for live discharge from hospice. Although risk factors for live discharge among hospice patients have been well documented, prior research has not examined the role of neighborhood socioeconomic characteristics, or how these characteristics relate to racial/ethnic disparities in hospice outcomes.
OBJECTIVE: To examine associations between neighborhood socioeconomic characteristics and risk for live discharge from hospice because of acute hospitalization. The authors also explore the moderating role of race/ethnicity in any observed relationship.
RESEARCH DESIGN: Retrospective cohort study using electronic medical records of hospice patients (N=17,290) linked with neighborhood-level socioeconomic data (N=55 neighborhoods). Multilevel models were used to identify the independent significance of patient and neighborhood-level characteristics for risk of live discharge because of acute hospitalization.
RESULTS: Compared with the patients in the most well-educated and affluent sections of New York City [quartile (Q)4], the odds of live discharge from hospice because of acute hospitalization were greater among patients who resided in neighborhoods where lower proportions of residents held college degrees [Q1 adjusted odds ratio (AOR), 1.36; 95% confidence interval (CI), 1.06-1.75; Q2 AOR, 1.41; 95% CI, 1.07-1.84] and median household incomes were lower (Q1 AOR, 1.42; 95% CI, 1.10-1.85; Q2 AOR, 1.43; 95% CI, 1.10-1.85; Q3 AOR, 1.39; 95% CI, 1.07-1.80). However, these observed relationships were not equally distributed by patient race/ethnicity; the association of neighborhood socioeconomic disadvantage and risk for live discharge was significantly lower among Hispanic compared with white patients.
CONCLUSIONS: Findings demonstrate neighborhood socioeconomic disadvantage poses a significant risk for live discharge from hospice. Additional research is needed to clarify the social mechanisms underlying this association, including greater attention to the experiences of hospice patients from under-represented racial/ethnic groups.
Hospice programmes are important for providing end-of-life care to patients with life-limiting illnesses. Hospice enrolment improves quality of life for patients with advanced cancer and reduces the risk of depression for caregivers. Despite the clear benefits of hospice care, patients with haematological malignancies have the lowest rates of enrolment among patients with any tumour subtype. Furthermore, when patients with haematological disorders do enrol into hospice care, they are more likely to do so within 3 days of death than are patients with non-haematological malignancies. Although reasons for low and late hospice use in this population are multifactorial, a key barrier is limited access to blood transfusions in hospice programmes. In this Viewpoint, we discuss the relationship between transfusion dependence and hospice use for patients with blood cancers. We suggest that rather than constraining patients into either transfusion or hospice models, policies that promote combining palliative transfusions with hospice services are likely to optimise end-of-life care for patients with haematological malignancies.
Hospice is central to end-of-life care. Yet to receive hospice services, Medicare beneficiaries need to forgo treatments related to their terminal conditions. Thus, patients with cancer cannot receive radiotherapy or chemotherapy, such as single-fraction radiotherapy for painful bone metastasis, for palliative purposes. To alleviate this constraint, some hospices have developed open-access programs that allow patients to receive care for their terminal conditions. These hospices, however, encounter an increase in costs without an accompanying increase in reimbursement. In 2016, the Centers for Medicare & Medicaid Services initiated the Medicare Care Choices Model (MCCM), which allows participating hospices to provide care for beneficiaries’ terminal conditions and receive a higher payment rate. Despite this, very few hospices participate in the MCCM. To date, little is known about trends in hospices providing palliative radiotherapy and chemotherapy. This topic is particularly important now, as hospices may be reluctant to provide new, expensive immunotherapies.
Background: Voluntary work plays a significant role in hospice care, but international research has mainly been conducted on the mental health and fear of death of paid hospice staff. The aim of the present study was to compare the Hungarian hospice volunteers with paid employees with regard to attitudes and fear of death, as well as mental health in order to see their role in hospice work and their psychological well-being more clearly.
Methods: The target population of the cross-sectional questionnaire study was hospice care providers in Hungary (N = 1255). The response rate was 15.5% (N = 195); 91.8% (N = 179) of them were women. The mean age of female hospice workers was 45.8 years (SD = 10.46 years, range: 23–73 years). One-quarter (27.9%, N = 50) of the female respondents were volunteers. The instruments were: the Multidimensional Fear of Death Scale, the Perceived Stress Scale, the WHO-5 Well-Being Index, and a shortened versions of the Beck Depression Inventory and the Maastricht Vital Exhaustion Questionnaire.
Results: Volunteers scored significantly lower on 5 dimensions of fear of death than paid employees, and showed significantly lower levels of vital exhaustion and significantly higher levels of psychological well-being than paid employees. Fear of the dying process was associated with an increased perceived stress, depressive symptoms, and vital exhaustion in both groups. Psychological well-being showed a significant negative, moderate correlation with four aspects of fear of death among paid staff; this pattern did not appear in the volunteer group. In addition, the association between fear of premature death and perceived stress, vital exhaustion, and depressive symptoms was more pronounced is case of paid workers.
Conclusion: Higher levels of psychological well-being and lower levels of fear of death among hospice volunteers suggest that they are less exhausted than paid employees. Increasing the recruitment of volunteers in hospices may help reduce the overload and exhaustion of paid employees.
Palliative medicine is specialized medical care for people with serious illness. Serious illness is one with high risk of mortality that negatively affects quality of life or function or is burdensome in symptoms, treatments, or caregiver stress. Palliative care improves symptom management and addresses the needs of patients and families, resulting in improved patient and caregiver quality of life and reduced symptom burden and health care utilization. Hospice is palliative care for patients with a prognosis of 6 months or less and is appropriate when goals are to avoid hospitalization and maximize time at home for patients who are dying.
CONTEXT: Providing hospice and palliative care (HPC) early in the course of care for patients with life-threatening illness is important for improving patient quality of life. However, little literature exists for factors affecting to the intention to use early palliative care (EPC) of general population.
OBJECTIVES: This study aimed to identify the sources of information about HPC, investigate whether they affect intention to use HPC and EPC, and examine the relationship between the components of a good death and the intention to use HPC and EPC.
METHODS: A stratified nationwide cross-sectional survey including 1,500 participants, 20 to 74 years old, was conducted to investigate their intentions to use HPC and EPC, available information sources, and perceived components of a good death.
RESULTS: The main sources of information about HPC were television and radio. Information acquired from health professionals was positively associated with the intention to use EPC. While regarding a good relationship with family as a component of a good death was related to low intention to use EPC, being able to trust medical staff, being involved in decisions about care, and being respected as an individual were associated with high intention to use EPC.
CONCLUSION: Information from healthcare providers and public awareness through education and publicity efforts are necessary to inform the public about the benefits of EPC. Furthermore, it is essential that medical staff cultivate the skills necessary to secure public trust and provide care that respects patients until the end of their lives.
CONTEXT: Pediatric palliative care (PPC) can improve quality of life for children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, PPC resources and personnel are often inequitably distributed towards urban areas with major hospital systems. A community needs assessment (CNA) that evaluates the current status of PPC and pediatric hospice care can help identify gaps and opportunities to improve PPC access.
OBJECTIVES: A CNA was performed in the state of Georgia to explore the scope and gaps of PPC and hospice services and plan for what is needed to grow PPC and hospice services.
METHODS: The CNA utilized a mixed-methods approach, including a community profile, literature search, windshield survey, key informant interviews, and a quantitative online survey. The methodology is outlined in a companion manuscript, entitled "A Methodological Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources."
RESULTS: Four key themes were identified from synthesis of primary and secondary data collection: defining and providing PPC, the environment for PPC in Georgia, coordination and collaboration, and the future of PPC in Georgia. Recommendations to improve PPC services in Georgia were categorized by feasibility and importance. High feasibility, high importance recommendations included expanding PPC education for both providers and patients, and creating a formal network or coalition of PPC providers and allies who can work collaboratively at multiple care levels across Georgia in expanding PPC services.
CONCLUSIONS: In Georgia, this assessment provides the foundation for next steps in coordinated efforts between hospital-based clinicians, state hospice and palliative care organizations, and state policy makers to ultimately expand PPC care available to children and families.
Hospital palliative care is an essential part of the COVID-19 response but data are lacking. We identified symptom burden, management, response to treatment, and outcomes for a case series of 101 in-patients with confirmed COVID-19 referred to hospital palliative care. Patients (64 male, median [IQR] age 82 [72-89] years, Elixhauser Comorbidity Index 6 [2-10], Australian-modified Karnofsky Performance Status 20 [10-20]), were most frequently referred for end of life care or symptom control. Median [IQR] days from hospital admission to referral was 4 [1-12] days. Most prevalent symptoms (n) were breathlessness (67), agitation (43), drowsiness (36), pain (23) and delirium (24). Fifty-eight patients were prescribed a subcutaneous infusion. Frequently used medicines (median-maximum dose/24h) were opioids (morphine, 10-30mg; fentanyl, 100-200mcg; alfentanil 500-1000 mcg) and midazolam (10-20mg). Infusions were assessed as at least partially effective for 40/58 patients, while 13 patients died before review. Patients spent a median [IQR] of 2 [1-4] days under the palliative care team, who made 3 [2-5] contacts across patient, family and clinicians. At March 30 2020, 75 patients had died, 13 been discharged back to team, home or hospice, and 13 continued to receive inpatient palliative care. Palliative care is an essential component to the COVID-19 response, and teams must rapidly adapt with new ways of working. Breathlessness and agitation are common but respond well to opioids and benzodiazepines. Availability of subcutaneous infusion pumps is essential. An international minimum dataset for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops.
During an epidemic, almost all healthcare facilities restrict the visiting of patients to prevent disease transmission. For hospices with terminally ill patients, the trade-off between compassion and infection control becomes a difficult decision. This study aimed to survey the changes in visiting policy for all 76 hospice wards in Taiwan during the COVID-19 pandemic in March 2020. The altered visiting policies were assessed by the number of visitors per patient allowed at one time, the daily number of visiting slots, the number of hours open daily, and requisites for hospice ward entry. The differences in visiting policies between hospice wards and ordinary wards were also investigated. Data were collected by reviewing the official website of each hospital and were supplemented by phone calls in cases where no information was posted on the website. One quarter (n = 20) of hospice wards had different visiting policies to those of ordinary wards in the same hospital. Only one hospice ward operated an open policy, and in contrast, nine (11.8%) stopped visits entirely. Among the 67 hospice wards that allowed visiting, at most, two visitors at one time per patient were allowed in 46 (68.6%), one visiting time daily was allowed in 32 (47.8%), one hour of visiting per day was allowed in 29 (43.3%), and checking of identity and travel history was carried out in 12 wards (17.9%). During the COVID-19 pandemic, nearly all hospice wards in Taiwan changed their visiting policies, but the degree of restriction varied. Further studies could measure the impacts of visiting policy changes on patients and healthcare professionals.
Patients with dementia may be discharged from hospice if their condition stabilizes. The loss of professional support and an already complex grief process needs careful attention. A live discharge presents a unique experience for each hospice patient, caregiver, and hospice team, which varies from traditional bereavement theories used to describe the grieving process. This article explores live discharge from hospice for caregivers of adults with dementia through a theoretical lens of Symbolic Interactionism (SI) and Attachment Theory (AT). The theories of SI and AT support and assist in understanding the experience of caregivers who lose hospice support due to ineligibility. In addition, caregivers watch the gradual deterioration and psychological loss of someone with dementia while they remain alive described as an ambiguous loss. Ambiguous loss as a subset of traditional bereavement theories provides a framework for this exploration and provides a relevant illustration of the complex needs. This article will conclude with implications for social work practice. It is important for hospice clinicians to be aware of current termination practices necessary to manage appropriate attachments, support the symbolic meaning of the hospice experience, validate the ambiguous losses, and maintain a sense of hope through a live discharge from hospice.