Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term palliative care is often confused with end of life or hospice services limiting its application to persons with chronic illnesses who might benefit. Non-hospice palliative care is a term that is emerging to more accurately reflect the broader care model that palliative care represents. The aim of this review was to identify the characteristics of published nonhospice palliative care interventions. We derived our sample predominantly from a recently published systematic review and meta-analysis and selected studies published since the review. Inclusion criteria were: self-described palliative care intervention studies using randomized designs for participants with lifelimiting illnesses aged 18 years or older. These 38 studies fell into 3 broad categories: primary, specialty, and hybrid models. Common challenges among these models include limited education of generalists, limited reimbursement, and limited access in certain areas. However, increasing palliative care usage has also been associated with increased hospice use and appropriate timing of referrals.
Metastatic renal cell carcinoma (RCC) is a leading cause of cancer deaths in developed nations. The past decade has seen the approval of numerous systemic therapies for RCC, most recently immune checkpoint inhibitors (ICI). Nivolumab, an anti-programmed cell death 1 antibody, was superior to everolimus in a large phase 3 trial in clear-cell RCC (ccRCC), and is now approved by the US Food and Drug Administration for metastatic RCC after progression on prior anti-antiangiogenic therapy. The overall response rate is 25%, and there is a subset of patients who demonstrate pseudoprogression where initial tumor growth is followed by decreased tumor burden. Differentiating between progression and pseudoprogression has been chanllenging.
Herein we report the case of a patient with metastatic ccRCC with clinical deterioration and progression after 3 doses of nivolumab who went to hospice, only to come back 6 months later with less disease.
Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.
Background: Hospice is the key provider of end-of-life care to patients. As the number of U.S. hospice agencies has rapidly increased, the performance has been scrutinized more deeply.
Purpose: To foster understanding of how hospice performance is measured and what factors are associated with performance, we conducted a systematic review of empirical research on hospice performance in the United States.
Methods: Both structure-process-outcome and structure-conduct-performance frameworks were applied to categorize and summarize the hospice performance literature. A total of 36 studies were included in the systematic review.
Results: Hospice agencies adopted different strategies (e.g., service provision strategy and staffing strategy) to improve performance. Two strategic approaches (innovation and volunteer usage) were associated with better outcomes. Hospice organizational factors, market environment, and patient characteristics were related to hospice strategic conduct and performance. Majority of hospice performance studies have examined the relationship between hospice structure and strategic conduct/process, with fewer studies focusing on structure performance and even fewer concentrating on strategy performance.
Practice implications: Patient, organizational, and market factors are associated with hospice strategic conduct and performance. The majority of the literature considered the impact of hospice organizational characteristics, whereas only a few studies included patient and market factors. The summarization of factors that may influence hospice performance provides insight to different stakeholders.
Context: Although the early and middle stages of Huntington's disease (HD) and its complications have been well described, less is known about the course of late-stage illness. In particular, little is known about the population of patients who enroll in hospice.
Objectives: Our goal is to describe the characteristics of patients with HD who enrolled in hospice.
Methods: This is a retrospective cohort study of electronic medical record data from 12 not-for-profit hospices in the United States from 2008 to 2012.
Results: Of the 164,032 patients admitted to these hospices, 101 (0.06%) had a primary diagnosis of HD. Their median age was 57 (IQR 48-65) and 53 (52.5%) were women. Most patients were cared for by a spouse (n = 36, 36.6%) or adult child (n = 20, 19.8%). At the time of admission, most patients were living either at home (n = 39, 38.6%) or in a nursing home (n = 41, 40.6%). All were either bedbound or could ambulate only with assistance. The most common symptom reported during enrollment in hospice was pain (n = 34, 33.7%) followed by anxiety (n = 30, 29.7%), nausea (n = 18, 17.8%), and dyspnea (n = 10, 9.9%). Patients had a median length of stay in hospice of 42 days, which was significantly longer than that of other hospice patients in the sample (17 days), P < 0.001. Of the 101 patients who were admitted to hospice, 73 died, 11 were still enrolled at the time of data analysis, and 17 left hospice either because they no longer met eligibility criteria (n = 14, 13.7%) or because they decided to seek treatment for other medical conditions (n = 3, 3.0%). Of the 73 patients who died while on hospice, most died either in a nursing home (n = 29; 40%) or a hospital (n = 27; 37%). Seventeen patients (23%) died at home. No patient that started in a facility died at home.
Conclusion: Patients with HD are admitted to hospice at a younger age compared with other patients (57 vs. 76 years old) but have a significant symptom burden and limited functional status. Although hospice care emphasizes the importance of helping patients to remain in their homes, only a minority of these patients were able to die at home.
Children receiving palliative care services are held within the context of a family and often within multiple-generational arms. The purpose of this case series paper is to recognize grandparents' roles in their family system from a personal, cultural, and anthropological perspective; to explore emotions and experiences as applies to grandparents of children receiving palliative care; and to provide tangible insight into caring well for families across the generational arc.
Cancer is the most common cause of mortality worldwide. Although recent advances of multiple modality cancer management have significantly improved the cure and control rates, a significant proportion of patients are still refractory to the standard and available treatments. Early initiation of palliative care can reduce cancer suffering, improve health-related quality of life and possibly prolong survival. It also allows patients and their caretakers to perceive the trajectory of their cancer, so that better and advanced care planning can be contemplated and implemented. The traditional beliefs and perceptions of cancer also differ significantly between the East and the West, which may also affect the preferential approach to palliative care. This review provides an overview of palliative care services in Hong Kong, as compared with other parts of the world. In addition, we shall also explore how cancer perceptions affect the decision-making on palliative care.
Objective: In the emotionally intense field of healthcare, the ability to peacefully inhabit one's body, maintain good boundaries, and be fully present during care is essential. This study aimed to validate the recently developed Mindful Self-Care Scale (MSCS) among hospice and healthcare professionals and develop a brief version of the 33-item MSCS.
Method: A sample of hospice and healthcare professionals from all 50 states (n = 858) was used. A confirmatory factor analysis was run using a rigorous methodology for validation and item reduction to develop a brief version of the 33-item MSCS. The brief MSCS (B-MSCS) was developed by identifying items for exclusion through examination of conceptual overlap, descriptive statistics by detecting sources of improvement model fit using confirmatory factor analysis. Model modifications were done sequentially and with regard to theoretical considerations.ResultThe existing model, 33-item MSCS with six subscales, had good fit to the data with all indicators in acceptable ranges (chi-square/df = 3.08, df (480), p < 0.01, root mean square error of approximation = 0.059, comparative fit index = 0.915, Tucker and Lewis's index of fit = 0.907). Nine items were excluded on the basis of very low loadings and conceptual and empirical overlap with other items.
Significance of results: The final 24-item, B-MSCS model was consistent with the original conceptual model and had a closer fit to the data (chi-square/df = 1.85, df (215), p < 0.01, root mean square error of approximation = 0.041, comparative fit index = 0.961, Tucker and Lewis's index of fit = 0.955). In addition, the reliability, construct, and concurrent validity of the MSCS and B-MSCS were in the acceptable and good ranges, respectively. Mean and standard deviation of the MSCS and B-MSCS scores were similar; B-MSCS mean scores well approximated the MSCS scores. Informal mindful self-care, in the process of everyday life, was practiced more regularly and associated with increased wellness and reduced burnout risk than formal mind-body practices.
Introduction: The extremity edema of advanced disease is a common, multifactorial feature, which impairs patients' activities and quality of life. The most frequently chosen management is based on combined decongestive physiotherapy or pharmacotherapy (with diuretics or steroids). Subcutaneous lymphatic drainage in refractory edema may decrease the swelling, prevent spontaneous lymphorrhea, but also increase the risk of infection. Safe and effective conservative management in diuretics-resistant edemas is lacking. The objective of this prospective, observational study was to assess the effectiveness and tolerability of combined physiotherapeutic and diuretic therapy in edemas refractory to parenteral diuretics.
Methods: A group of 19 patients with advanced disease and severe bilateral leg edema resistant to parenteral diuretic therapy were treated for three days with a combination of multilayer short-stretch compression bandaging and furosemide in hypersaline intravenous infusion.
Results: A clinically meaningful decrease in mean limb volume (of 1.52 L; 20.6%; P < 0.0001)-strongly correlating with patients' weight loss (rho = 0.71; P = 0.0001), with a lowering of the intensity of complaints-was achieved. The treatment was well tolerated, without decreasing the performance status in any patient. Stable levels of blood pressure, laboratory kidney profile (potassium, sodium, creatinine clearance), and serum albumin were observed. Maintenance of the achieved results with a good compliance was seen during an informal follow-up at the hospice.
Conclusion: The combination of compression therapy with hypersaline diuretics could be considered as a valuable option for refractory cases of limb edema in advanced disease.
Context: Nearing death, hospice patients are increasingly unable or unwilling to self-report their symptom intensity and rely on nurses' assessments.
Objectives: We hypothesized that concordance between patients' and nurses' assessments of symptom intensity improves over time.
Method: A prospective longitudinal study was conducted from January 2012 to June 2015 using dyads of patient- and nurse-reported outcome measures, collected in daily hospice practice in the first three weeks after admission. Main outcomes were symptom intensity and well-being, measured using the Utrecht Symptom Diary (USD) and USD-Professional. Absolute concordance was the proportion of dyads with no difference in scores between USD and USD-Professional per week after admission. For agreement beyond chance, the squared weighted Kappa for symptom intensity and the one-way agreement intraclass correlation coefficient for well-being were used.
Results: The most prevalent symptoms, fatigue, dry mouth, and anorexia also had the highest intensity scores assessed by patients and nurses. Symptom intensity was underestimated more frequently than overestimated by the nurses. The absolute concordance was fair to good (35%-69%). Agreement beyond chance was low to fair (0.146-0.539) and the intraclass correlation for well-being was low (0.25-0.28). Absolute concordance and agreement beyond chance did not improve over time.
Conclusion: Concordance between patients' and nurses' assessment of symptom prevalence is good, and both patients and nurses reveal identical symptoms as most and least prevalent and intense. However, nurses tend to underestimate symptom intensity. Concordance between patients and nurses symptom intensity scores is poor and does not improve over time.
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.
Background: Despite growing interest from policy makers, researchers and activists in the global development of palliative care, there is still little science to underpin it. This study presents the methods deployed in the creation of a 'world map' of palliative care development. Building on two previous iterations, with improved rigour and taking into account reviewers' feedback, the aim of this recalibrated version of the study is to determine the level of palliative care development in 198 United Nations recognised countries in 2017, whilst ensuring comparability with previous versions. We present methods of data collection and analysis.
Methods and analysis: Primary data on the level of palliative care development in 2017 was collected from in-country experts through an online questionnaire and, where required, supplemented by published documentary sources and grey literature. Data relating to the total population of each country as well as per capita opioid consumption were derived from independent sources. Data analysis was conducted according to a new scoring system and algorithm developed by the research team.
Ethics and dissemination: The study was approved by the University of Glasgow College of Social Sciences Research Ethics Committee. Findings of the study will be disseminated in peer-reviewed journals, as a contribution to the second edition of the Global Atlas of Palliative Care at the End-of-Life, and via social media, including the Glasgow End of Life Studies Group blog and the project website.
Limitations of the study: There are potential biases associated with self-reporting by key in-country experts. In some countries, the identified key expert failed to complete the questionnaire in whole or part and data limitations were potentially compounded by language restrictions, as questionnaires were available only in three European languages. The study relied in part on data from independent sources, the accuracy of these data could not be verified.
Aim: To develop and implement a region wide skills matrix for palliative care and district nurses in rural Victoria in order to identify and address individual learning needs and appropriate professional development strategies based on the Australian National Palliative Care Standards. This study is the first in a series of papers discussing and evaluating the development and implementation of a skills matrix. Future papers will report on participants’ data reporting.
Methods: The development and implementation of a skills matrix for palliative care nurses was based on using several evidence-based strategies involving four main stages. There were: stakeholder consultation, collaboration, consolidation and implementation. The initial stage of development of the matrix involved consultation with regional stakeholders to establish and refine the project objectives. The second stage involved collection of information from regional stakeholders; brainstorming and discussion of the technical skills required for palliative care and the cross over with district nursing. The third stage involved a facilitated process whereby action plans were devised and the final stage involved a plan for the survey dissemination and evaluation of the training needs. Other evidence-based strategies used were Benner’s theoretical model of clinical competence, the Australian National Palliative Care Standards and the triple C model of project implementation.
Results: This study reported on the development and implementation of a self-assessment of competencies skills matrix for nurses working in palliative care based on the Australian National Standards of palliative care used by services. The matrix included all the aspects covered by the Australian National Palliative Care Standards and mapped them to various competencies using Benner’s model ranging from novice to expert. The availability of a skills matrix tool to self-assess is important to keep track of the clinical competencies gained by palliative care nurses. Targeted educational interventions identified by the skills matrix have the potential to improve quality of care provided in the palliative care setting.
Conclusion: The successful development and implementation of the palliative skills matrix across the Gippsland region relied on using several evidence-based strategies to standardise the competencies across the palliative care setting in rural Victoria, Australia. Examples of these strategies included using Benner’s theoretical competency model, the Australian National Palliative Standards and the triple C model, which included stakeholders’ consultation, collaboration and consolidation.
Introduction and Aim: Utilization of palliative care services in patients dying of end-stage liver disease (ESLD) is understudied. We performed a retrospective review of palliative care services among patients with ESLD unsuitable for liver transplantation (LT) at a tertiary care center.
Material and Methods: Deceased ESLD patients considered unsuitable for LT from 2007-2012 were identified. Patients were excluded if they received a transplant, had an incomplete workup, were lost to follow up or whose condition improved so LT was not needed. Of the 1,175 patients reviewed, 116 met inclusion criteria.
Results: Forty patients (34.4%) received an inpatient palliative care (PC) consultation and forty-one patients (35.3%) were referred directly to hospice. Thirty-three patients (28.4%) transitioned to comfort measures without PC consultation (median survival < 1 day). The median interval between LT denial and PC consultation or hospice was 28 days. Median survival after PC consult or hospice referral was 15 days. In conclusion, in a single center retrospective review of ESLD patients, palliative care services, when utilized, were for care at the very end of life. Without consultation, aggressive interventions continued until hours before death. We propose that ESLD patients could benefit from PC consultation at time of LT evaluation or based on MELD scores.
This aims of this longitudinal study were to identify the risk factors of and depressive mood in caregivers who received hospice care 6 months after their patients’ death, and the cutoff pint of the bereavement risk index, as well as, the prevalence of persistent complex bereavement disorder (PCBD). There were 30.28 and 4.59% of caregivers with depressive mood and PCBD, respectively. The risk factors included resistance to the reality of patients’ death, anger, self-blame and guilt, support networks, and coping. The cutoff points of total bereavement risk index and five-item short form were 10/11 and 9/10, respectively.
Objectives: This study identified sociodemographic and clinical factors that predicted live discharge among home hospice patients with heart failure, and related these findings to perspectives among health care providers about challenges to caring for these patients.
Background: Hospice patients with heart failure are frequently discharged from hospice before death (“live discharge”). However, little is known about the factors and circumstances associated with live discharge among patients with heart failure.
Methods: Quantitative analyses of patient medical records (N = 1,498) and qualitative interviews were performed with health care providers (n = 19) at a not-for-profit hospice agency in New York City.
Results: Thirty percent of home hospice patients with heart failure experienced a live discharge, most frequently due to 911 calls that led to acute hospitalization. The odds of acute hospitalization were higher for younger patients (age 18 to 74 years: adjusted odds ratio [AOR]: 2.10; 95% confidence interval [CI]: 1.34 to 3.28), Black (AOR: 2.06; 95% CI: 1.31 to 3.24) or Hispanic (AOR: 2.99; 95% CI: 1.99 to 4.50) patients, and higher functioning patients (Palliative Performance Scores of 50% to 70%; AOR: 5.68; 95% CI: 3.66 to 8.79). Qualitative interviews with health care providers highlighted the unique characteristics of heart failure (e.g., sudden changes in patients’ condition), the importance of patients’ understanding of hospice and their own prognosis, and the role of sociocultural and family context in precipitating and potentially preventing live discharge (e.g., absence of social supports in the home).
Conclusions: Live discharge from hospice, especially due to acute hospitalization, is common with heart failure. Greater attention is needed for patients’ knowledge of and readiness for hospice care, especially among younger and diverse populations, and for factors related to the social and family context in which hospice care is provided.
Context: Internationally, a variety of reimbursement systems exists for palliative care (PC). In Germany, PC units (PCUs) may choose between per-diem rates and diagnosis-related groups (DRGs). Both systems are controversially discussed.
Objectives: To explore the experiences and views of German PCU clinicians and experts for PCU financing regarding per-diem rates and DRGs as reimbursement systems with a focus on (1) cost coverage, (2) strengths and weaknesses of both financing systems, and (3) options for further development of funding PCUs.
Design: Qualitative semistructured interviews with PCU clinicians and experts for PCU financing, analyzed by thematic analysis using the Framework approach.
Setting/Subjects/Measurements: Ten clinicians and 13 experts for financing were interviewed June-October 2015 on both reimbursement systems for PCU.
Results: Interviewees had divergent experiences with both reimbursement systems regarding cost coverage. A described strength of per-diem rates was the perceived possibility of individual care without direct financial pressure. The nationwide variation of per-diem rates and the lack of quality standards were named as weaknesses. DRGs were criticized for incentives perceived as perverse and inadequate representation of PC-specific procedures. However, the quality standards for PCUs required within the German DRG system were described as important strength. Suggestions for improvement of the funding system pointed toward a combination of per-diem rates with a grading according to disease severity/complexity of care.
Conclusions: Expert opinions suggest that neither current DRGs nor per-diem rates are ideal for funding of PCUs. Suggested improvements regarding adequate funding of PCUs resemble and supplement international developments.
Background: Opioid refractory pain is a common problem in pain management. Dexmedetomidine is suggested to have opioid-sparing effects, with well-described use in surgical and intensive care unit settings. Some authors advocate its benefit in reducing delirium. Its effects are thought to be exhibited through agonism of pre- and postsynpatic a2-receptors in the central nervous system. It is more selective on a2-receptors than clonidine, accounting for its relatively lower incidence of hypotension. Its use in sedation is favored because it does not depress the respiratory system. The main side effects reported include bradycardia.
Case Description: Twenty-eight-year-old woman with triple negative left breast cancer and a locally destructive tumor was admitted to hospice after exhausting her disease-directed therapy options. Her chief complaint was a throbbing, burning pain to the left chest wall, lower back, and bilateral lower extremities, rated 8/10 on a 10-point verbal scale. Multiple pharmacologic agents for pain, including patient-controlled analgesia infusions with adjuvant methadone and steroids, had failed to provide consistent pain management. Symptoms were difficult to control in the home setting, and she required multiple admissions to our inpatient hospice unit for pain management. She also developed episodes of delirium shortly after hospice admission. We attributed her symptoms to rapid disease progression. After failed pain control with opioids, ketamine, and lidocaine, we trialed a dexmedetomidine infusion. While on the infusion, her pain rating decreased to 0/10 and she had no delirium. Pain recurred soon after cessation of the infusion, initially rated 6/10.
Conclusion: Dexmedetomidine is safe for opioid refractory pain in the hospice inpatient setting. However, its effects may not be sustained. There is potential for use in end-of-life care, with added benefit for possible control of delirium.
Background: The most important decision after diagnosing terminal cancer is whether to provide active therapy or withhold treatment.
Objective: To analyze the aggressiveness of care by evaluating systemic anticancer therapy (SACT) given near to death, describing this care and identifying factors that determine its use.
Design: This involves retrospective observational cohorts study.
Setting/Subjects: This involves patients with metastatic tumors who died at a University Hospital in Spain between 2015 and 2016.
Measurements: Data obtained from prescribing oncologists and patients' clinical records, type of cancer, and information on treatment. The dependent variable used was the interval between the date of the last dose and date of death.
Results: Ninety-four (32.60%) of 288 patients received SACT in the last month of life. This cohort had a higher frequency of lung cancer (OR: 1.58; CI 95%: 1.14-2.18), received more care from oncologist 2 (OR: 1.50; CI 95%: 1.08-2.08), had fewer last-line treatment cycles (OR: 1.28; CI 95%: 1.13-1.45), a lower subjective response (OR: 3.13; CI 95%: 1.34-7.29), less clinical benefit (OR: 2.38; CI 95%: 1.04-5.55), more visits to the Emergency Department (OR: 1.59; CI 95%: 1.06-2.38), and less care from the Palliative Care Unit (OR: 4.55; CI 95%: 2.69-7.70). In multivariate analysis, the predictors of having received SACT close to death remained: receiving fewer cycles of treatment (OR: 1.28; CI 95%: 1.12-1.47) and less palliative care (OR: 4.54; CI 95%: 2.56-7.69).
Conclusions: A third of cancer patients received SACT in the last month of life with less efficacy and poorer quality of care than patients not receiving it.
Introduction: Studies have shown aggressive cancer care at the end of life is associated with decreased quality of life, decreased median survival, and increased cost of care. This study describes the patients most likely to receive systemic anticancer therapy at the end of life in a community cancer institute.
Materials and Methods: We performed a retrospective cohort study of 201 patients who received systemic anticancer therapy in our institution and died between July 2016 and April 2017. Data collected included primary malignancy, hospice enrollment, healthcare utilization, Oncology Care Model (OCM) enrollment, and clinical assessments at last office visit prior to a treatment decision before death. We defined our outcome variable as the receipt of anticancer treatment in the last 14 days of a patient's life. We evaluated 20 clinical exposure variables with respect to the outcome classes. Risk ratios along with their associated confidence intervals and P values were calculated. Significance was determined using the Benjamini-Hochberg procedure to account for multiple testing.
Results: Of the 201 patients who died of cancer, 36 (17%) received anticancer therapy within the last 14 days of life. Several risk factors were significantly positively associated with receiving anticancer therapy at the end of life including hospitalization within 30 days of end of life, number of hospitalizations per patient (=2), death in hospital, enrollment in OCM, and a diagnosis of hematologic malignancy.
Conclusion: Our findings demonstrate those enrolled in the OCM and those with hematologic malignancies have a higher risk of receiving anticancer therapy in the last 14 days of life. These observations highlight the need for better identifying the needs of high-risk patients and providing good quality care throughout the disease trajectory to better align end-of-life care with patients' wishes.