Background: The Centers for Medicare & Medicaid Services (CMS) Hospice Quality Reporting Program (HQRP) introduced the requirement that hospices nationwide begin collecting and submitting standardized patient-level quality data on July 1, 2014.
Objectives: This study examined whether this requirement has increased hospice total costs, general costs and visiting services costs.
Research Design: We conducted a cross-sectional study using data from the 2012 and 2014 Medicare hospice cost reports linked to hospice claims. We measured total costs per patient day (PPD), general costs PPD and visiting services costs PPD for freestanding hospices. We estimated the incremental costs of operating in 2014 vs. 2012 using hierarchical random effects models and adjusting for year, wage-index, care volume, case-mix and hospice and market characteristics, stratified by hospice ownership type.
Results: Both for-profit and nonprofit hospices reported higher total costs PPD and general services costs PPD in 2014 compared with 2012. Nonprofit hospices also reported higher general costs PPD in 2014 compared with 2012. In adjusted models, the total costs PPD in 2014 were $10.55 higher than in 2012 for non-profit hospices and $6.43 higher for for-profit hospices. The increase in general costs PPD and visiting services costs PPD ranged from $3.15 to $5.87 by ownership and type of costs. Both for-profit and non-profit hospices showed lower costs PPD for all types associated with more patients and longer length of stay.
Conclusions: Hospice costs increased following the CMS HQRP quality data collection/submission requirement. Complementary studies need to understand whether increased costs brought additional benefits.
OBJECTIVES: Family caregivers of hospice patients have multiple needs as they try to cope during a stressful time. Translatable interventions effective in improving caregiver outcomes are greatly needed. Our objective was to assess the impact of a problem-solving intervention (called Problem-Solving Intervention to Support Caregivers in End-of-Life Care Settings [PISCES]) to support hospice caregivers on caregiver quality of life and anxiety, and compare its effectiveness delivered face to face and via videoconferencing.
DESIGN: In this 4-year randomized clinical trial, caregivers were randomly assigned to a group receiving standard care with added "friendly calls" (attention control [AC] group), a group receiving standard care and PISCES delivered face to face (F2F), or a group receiving standard care and PISCES delivered via videoconferencing (VC).
SETTING: Home hospice.
PARTICIPANTS: A total of 514 caregivers participated (172 in AC, 171 in F2F, and 171 in VC). Caregivers were predominantly female (75%); mean age was 60.3 years.
INTERVENTION: PISCES includes a structured curriculum delivered in three sessions and motivates caregivers to adopt a positive attitude, define problems by obtaining facts, set goals, and generate and evaluate solutions.
MEASUREMENTS: Quality of life was measured by the Caregiver Quality of Life Index-Revised; anxiety was measured by the Generalized Anxiety Disorder 7-Item. Other measures included the Caregiver Reaction Assessment scale, demographic data, and an exit interview.
RESULTS: Compared with AC, caregivers in the F2F condition had postintervention reduced anxiety (-1.31 [95% confidence interval [CI] = -2.11 to .50]; p = .004) and improved social (.57 [95% CI = .19-.95]; p = .01), financial (.57 [95% CI = .21-.93]; p = .004), and physical quality of life (.53 [95% CI = .19-.87]; p = .01). There were no differences in caregivers in the VC condition compared with the AC condition.
CONCLUSION: The PISCES intervention improves caregiver outcomes and is effective when delivered in person. How to integrate technology to reduce the intervention delivery cost warrants further investigation.
BACKGROUND: Research shows that religion and spirituality are important when persons cope with serious and life-threatening illness. Patients who receive good spiritual care report greater quality of life and better coping, and such support is strongly associated with greater well-being, hope, optimism, and reduction of despair at end of life. Despite these benefits, evidence shows that many patients and caregivers (P/C) refuse spiritual care when a hospice team offers it, possibly resulting in unnecessary suffering.
OBJECTIVE: To better understand what contributes to spiritual support acceptance in hospice care.
DESIGN: Quasi-experimental quantitative study.
SETTING/SUBJECTS: 200 patients admitted to hospice.
MEASUREMENTS: Participants were divided equally into intervention and control arms. Control participants received standard information about the availability of chaplain support and an offer for referral to chaplain services. Intervention participants received educational intervention that explained hospice chaplain services and the evidence-based benefits of spiritual support. The association of chaplain acceptance was measured with treatment group, patient age, disease, church affiliation and support, sex, bereavement risk, and place of residence.
RESULTS: Among intervention participants, 64 (64%) accepted spiritual support versus 52 (52%) of control participants. The intervention arm's acceptance rate was higher than the control arm after adjustment for other variables. The variables associated with acceptance were age, primary diagnosis, and place of residence.
CONCLUSIONS: This research suggests that educational intervention that explains spiritual care in hospice and its benefits contributes importantly to greater acceptance and allows P/C to gain the benefits of spiritual support during end-of-life care.
OBJECTIVE: The objective of this update, presented at the 2018 Annual Assembly of the American Association of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), is to identify, summarize, and critique a sampling of recent research that has the potential for marked impact on hospice and palliative clinical practice.
METHODS: In a departure from previous years, we surveyed AAHPM and HPNA members to determine focused topic areas, from which we selected candidate articles. The two topic areas selected by the membership were "Moving into the great beyond: bringing palliative care into the subspecialties" and "Improving the conversation for patients with serious illness." Seven reports of original research published between January 1, 2012 and November 3, 2017 were identified through a systematic search of relevant databases, hand searching of leading journals, and discussion with experts in the field. Candidate articles were scored and ranked independently by four reviewers based on methodological quality, appeal to a breadth of palliative care clinicians across settings, and potential for impact.
RESULTS: We summarize the seven articles with the highest ratings.
The Quality Oncology Practice Initiative has several metrics related to end-of life (EOL) care, including hospice enrollment =3 days, with lower scores signaling better performance. Of privately insured patients with head and neck cancer, 3.5% were enrolled in hospice prior to death and 21.3% spent =3 days in hospice, indicating aggressive EOL care. Patients with late hospice enrollment had higher spending in the last 30 days of life (DOL). Patients in hospice =3 days spent $37,426, while those in hospice >3 days spent $24,418 (P = .002). The largest portion of this difference was attributable to inpatient services. Patients in hospice =3 days spent $22,089 on inpatient services in the last 30 DOL, while those in hospice >3 days spent $8361 (P < .001). Further research is needed to determine if more high-value care can be provided with earlier hospice enrollment and to ensure that goal concordance is included in defining high-value care.
Pour les patients admis en unité de soins palliatifs (USP), les directives anticipées (DA) pourraient être un outil permettant de connaître leurs volontés et de s'inscrire dans le respect de leur autonomie. Cependant, les DA sont rarement rédigées ou peu contributives. Cette étude a pour objectif d'évaluer la faisabilité de la co-construction des DA en USP. La méthode utilisée est qualitative, celle d'une recherche-action. Elle a été réalisée sur deux mois dans l'USP du CHU de Bordeaux. Il a été proposé à des patients éligibles de co-construire leurs DA avec l'aide d'un médecin au cours d'un entretien semi-directif à propos des soins et de l'accompagnement de leur fin de vie. Une analyse de contenu des entretiens a été réalisée, suivie d'une évaluation du processus par un questionnaire de satisfaction. Sur les 28 patients hospitalisés dans l'USP sur cette période, douze étaient éligibles pour participer à l'étude. Sept patients ont accepté, mais l'état de santé de cinq d'entre eux s'est rapidement aggravé et seulement deux entretiens ont finalement pu être réalisés. Les difficultés mises en évidence pour la réalisation des DA sont le choix du moment adéquat pour initier la démarche et la nécessité d'adaptation au patient et à la situation. Néanmoins, cette co-construction a semblé permettre une meilleure contextualisation des DA dans le sens d'une démarche globale. La rédaction des DA a été difficilement réalisable du fait de la phase avancée de la maladie chez les personnes concernées. Il semblerait nécessaire d'anticiper l'information sur les DA plus précocement, comme par exemple durant la phase des traitements spécifiques. De plus, une co-construction des DA pourrait améliorer leur pertinence et leur utilité.
INTRODUCTION: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers.
METHODS: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases.
RESULTS: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills.
CONCLUSION: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC's transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.
BACKGROUND: Patients with terminal conditions are often admitted to the emergency department (ED) for acute medical services, but studies have suggested that multiple ED admissions may negatively impact end-of-life (EOL) care. Research have shown that incorporating palliative care (PC) is integral to optimal EOL care, but it is an aspect of medical practice that is often neglected. The current study sought to provide an overview of health outcomes and hospital costs of patients with cancer admitted to The Ottawa Hospital and/or received acute medical services during their final 2 weeks of life. Cost comparisons and estimates were made between hospital and hospice expenditures.
METHODS: We conducted a retrospective chart review of palliative patients who died at The Ottawa Hospital in 2012. A total of 130 patients who visited the ED within 2 weeks of death were included in the analyses.
RESULTS: In this cohort of patients, 71% of admitted patients did not have advanced care directives and 85% experienced a metastasis, but only 18% had a PC medical doctor. Patients were hospitalized, on average, for 7 days and hospitalization costs exceeded the estimated hospice cost by approximately 2.5 times (Can$1 041 170.00 at Can$8009.00/patient vs Can$401 570.00 at Can$3089.00/patient, respectively).
CONCLUSION: Our study highlighted the importance of PC integration in high-risk patients, such as those in oncology. Patients in our sample had minimal PC involvement, low advanced care directives, and accrued high costs. Based on our analyses, we concluded that these patients would have likely benefited more from hospice care rather than hospitalization.
In 2012, we published a study in this journal exploring the emergence of unique skin changes in end-of-life patients admitted to a palliative care unit. The purpose of the study was to describe the skin changes and identify the relationship between these changes and time of death. In the above study of 80 patients, the skin changes were found to be unique and different from Kennedy terminal ulcers and deep tissue injuries. Median time from identification of skin changes and death was 36 hours. The phenomenon was named as Trombley-Brennan terminal tissue injury. The current article presents findings that include the study of additional 86 patients. The results further validate the phenomenon and its relationship with time of death.
BACKGROUND: Advance care planning (ACP), palliative care (PC), and hospice are often underutilized by African Americans (AAs). This study assessed the impact of stage of intent to discuss ACP options as key potential barriers.
METHODS: We examined intent to discuss completion of ACP, PC, and hospice among 22 AA patients with cancer admitted to a local safety net hospital. Participants were asked about intent to discuss an advanced directive or living will (AD/LW), medical power of attorney (MPOA), PC, and hospice with their doctors. Intent to discuss these ACP components was based on the transtheoretical model. Electronic health records were reviewed at various intervals to assess completion of ACP behaviors and survival.
RESULTS: Participants had colorectal (33%), breast (44%), and lung (23%) cancer, and 82% had stage III/IV disease. Low percentages of patients were in the precontemplation stage for AD/LW completion (4.6%), MPOA completion (13.6%), and PC discussions (27.2%), but 77.2% were in the precontemplation stage for hospice discussions. At 1 year, only 5% completed an AD/LW, 36.4% appointed an MPOA, 42.9% were referred to PC, and 12.5% were referred to hospice. More than half (54.6%) were deceased by the study's conclusion. Most (81%) of these died within 6 months of their baseline study assessment.
CONCLUSIONS: Despite being hospitalized with advanced cancer and having poor prognosis, intent to discuss ACP options, PC, and hospice in this population was variable, and completion of these activities was low. This formative research is needed to develop education and counseling interventions for this high-risk, vulnerable population.
OBJECTIVES: To summarise the current body of published evidence on the use of low-dose and/or adjuvant methadone in the palliative care setting.
METHODS: The authors searched multiple databases (PubMED, SCORPUS, EMBASE and the Cochrane library) for relevant articles using the terms 'methadone', 'palliative', 'low dose' and 'adjuvant'. The review was restricted to articles published between 2003 and 2018. Paediatric and single-case studies were also excluded. Evidence quality was assessed using the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) method.
RESULTS: Our search yielded 171 results, of which seven met the inclusion criteria. Four were retrospective chart reviews, one was a retrospective cohort study, one was a case series and one was a double-blind randomised control trial. The overall quality was found to be very low. Of the seven articles, all seven reported some improvement in pain with the addition of low-dose or adjuvant methadone. This improvement was statistically significant in four out of seven articles; statistical significance was not commented on in the remaining three articles.
CONCLUSION: While case series and chart reviews offer promising results about the utility of adjuvant and/or low-dose methadone in the management of complex pain, the very low evidence quality, relative dearth of studies and near absence of randomised controlled trials make it impossible to draw firm conclusions. Thus, while very preliminary evidence suggests methadone is a potentially effective and valuable agent, further research must be performed before such findings can be implemented into clinical practice.
OBJECTIVE: The aim of this study was to describe preferences for a good death among Chinese patients with advanced cancer and then to explore factors contributing to their preferences including patient demographics and disease variables.
METHODS: A convenience sample of 275 patients with advanced cancer was recruited from a tertiary cancer hospital in Beijing, China, between February and December 2017. A Chinese version of the Good Death Inventory (GDI) was used to measure patients' preferences for dying and death. Besides, data were collected using a multi-itemed questionnaire focusing on demographic and disease characteristics of patients.
RESULTS: Of the 275 questionnaires returned, 248 responses were analysed (effective response rate 90.2%). According to the total scores for each of the 20 domains, the five most important domains of a good death were: good relationship with family (19.80±2.39), independence (19.66±2.56), maintaining hope and pleasure (19.56±2.55), good relationship with medical staff (18.92±3.73), not being a burden to others (18.89±3.30). Patients' characteristics including age, educational status, religious belief, medical payment types, family economic status, past experiences of the death of others, the period since cancer diagnosis, past experiences of hospitalisation and subjective physical condition influenced their preferences for a good death (all p<0.05).
CONCLUSIONS: We had an in-depth knowledge and understanding of their preferences for good death among Chinese patients with advanced cancer. Meanwhile, we found some patients' factors contributed to different preferences for a good death. These findings have the potential to guide hospice care services aimed at achieving a good death for patients with advanced cancer.
The purpose of this study was to investigate relationships between four emotion regulation strategies (intrinsic affect-improving, intrinsic affect-worsening, extrinsic affect-improving, and extrinsic affect-worsening) and compassion fatigue, job satisfaction, and life satisfaction among 90 hospice nurses who completed an online survey. Intrinsic affect-improving was associated with higher life satisfaction. Intrinsic affect-worsening was associated with higher compassion fatigue and lower life satisfaction. Extrinsic affect-worsening was associated with lower job satisfaction. Overall, these findings support a multidimensional approach to understanding emotion regulation among hospice nurses.
AIM: Identify the palliative care learning needs of healthcare students and determine the acceptability of an innovative learning strategy for palliative care named competencia para cuidar en el hogar-paliar (CUIDAR-PALIAR) aimed to increase students' competencies.
METHODS: A single-group mixed methods design was used. A questionnaire was designed and semi-structured interviews were used to determine the palliative care competencies of undergraduate students; 90 students participated in the strategy.
FINDINGS: The learning needs of students are: approaches to death and loss, how to intervene with the patient's family, understanding of the palliative care context, management of the patient's pain and symptoms and the development of therapeutic communication skills.
CONCLUSION: The strategy is highly accepted by students, and statistically significant increases in palliative care were observed before and after the intervention. These preliminary results justify future interventions due to the potential effect of the strategy CUIDAR-PALIAR in the development of competencies for palliative care in undergraduate students.
Background: Location of death (LOD) is an important aspect of end-of-life (EOL) care. Adolescents and young adults (YAs) with pediatric malignancies are increasingly treated in pediatric institutions. YAs, generally defined as 18-39 years old, deserve specific attention because adults have unique developmental and social considerations compared with younger patients.
Objective: The goal of this retrospective cohort study was to understand the effect of treatment by a pediatric oncology program on EOL experiences for YAs. Specifically, we examined LOD, hospice, and palliative care (PC) involvement in a cohort of YAs who died of cancer in a large, quaternary care pediatric hospital.
Methods: This was a retrospective cohort study of patients >= 18 years of age, who died of cancer between January 1, 2010, and December 31, 2017. Standardized data were abstracted from the institutional cancer registry and the electronic medical record.
Results: YAs in this cohort more commonly died in the hospital (54.9%). Lack of hospice involvement and the presence of a documented do-not-resuscitate (DNR) order were significantly associated with inpatient death. The majority of patients had long-standing PC involvement (95.8%, median 318 days), a DNR order (78.9%), and had enrolled in hospice care (60.6%) before death.
Conclusions: These results suggest that a significant proportion of YAs with cancer remain inpatient for EOL care. Pediatric oncologists and PC teams may benefit from additional training in the unique psychosocial needs of YAs to optimize EOL care for these older patients.
BACKGROUND: Following organ donation, bodies of children are generally cared for in hospital mortuaries or by funeral directors, and their families are offered little routine bereavement support. A partnership between an organ donation nursing team and regional children's hospice trialled an initiative where families were offered bereavement support from the hospice, and their child's body was cared for in a 'cool room' after death. Hospice services are usually restricted to children with life-limiting conditions, and their families.
OBJECTIVE: To explore the perceptions and experience of nursing staff who are involved in supporting families of children and young people who have been cared for in children's hospice cool rooms after death, following organ donation.
DESIGN: A qualitative exploratory study consisting of a focus group interview with registered nurses from the children's hospice and organ donation teams.
METHOD: A purposeful sample of nurses was recruited. Data were collected in a digitally-recorded focus group interview during March 2018. The interview was transcribed and analysed using a qualitative content approach.
RESULTS: Six nurses participated in the focus group. Analysis revealed five themes that characterised the perceptions of nurses: (i) barriers to care, (ii) bereavement care for families, (iii) impact on families and staff, (iv) influencers and enablers of change, and (v) sustainability of new practices.
CONCLUSION: Nurses perceived the long-term, responsive and family-centred approach to bereavement support as a strength of the hospice model, reducing the experience of moral distress in organ donation nurses.
CONTEXT: Rates of psychological symptoms for patients with serious illness are high, but there has been limited research investigating psychological symptoms at the very end of life.
OBJECTIVES: To better understand the prevalence, severity and correlates of psychological distress at the very end of life.
METHODS: This retrospective cross-sectional study utilized caregiver proxy interviews. Caregivers were contacted after their care recipient recently died while receiving home hospice care and invited to participate in a brief interview with a trained research assistant. Patient, caregiver and hospice utilization data were also abstracted from electronic medical records, and caregiver burden scores were assessed via interview.
RESULTS: N = 351 caregivers were included in the study. According to caregivers, 46.4% of patients had moderate-to-severe anxiety, as assessed with a score of >=4 on the Edmonton Symptom Assessment Scale (ESAS) and 43% had moderate-to-severe symptoms (ESAS score >=4) of depression in the last week of life. Symptoms of anxiety and depression were significantly associated with caregiver burden scores and inversely associated with patient age.
CONCLUSION: Psychological symptom management at the very end of life is essential to providing comprehensive hospice care. Our study revealed that nearly half of all home hospice patients experience moderate-to-severe symptoms of anxiety and/or depression in the last week of life. Future research is needed to improve psychological symptom management at the very end of life in order to improve the quality of life for both patients and their families.
The aim of this study was to explicate ways in which parents tell their adolescents about a parent's death. This study used a descriptive, qualitative design. From a large hospice in northeastern Ohio, nine adolescent children and six surviving spouses of recently deceased hospice patients were recruited. Participants completed a demographic questionnaire and a semistructured individual interview. Thematic content analysis techniques were used to analyze the data. Surviving parents tell adolescents about the parent's death in ways that are intended to inform and ease the adolescents' distress. They engage in the process of disclosure in one of three ways: measured telling, matter-of-fact telling, and inconsistent telling. Findings from the current study are consistent with the ways parents told their children about an ill parent's life-threatening illness and imminent death. The findings support a framework that describes the processes of disclosure of a parent's illness, imminent death, and death to their adolescent children. Predeath findings about telling foreshadowed the postdeath findings. These results can be used to inform the development of interventions in which nurses and other health care professionals assist families with disclosure before and after death by tailoring strategies according to the family's communication style.
CONTEXT: Hospice utilization is an end-of-life quality indicator. The Deep South has known disparities in palliative care that may affect hospice utilization.
OBJECTIVES: To evaluate the association among Deep South patient and hospital characteristics and hospice utilization.
METHODS: This retrospective cohort study evaluated patient and hospital characteristics associated with hospice among Medicare cancer decedents aged >=65 in 12 southeastern cancer centers between 2012-2015. We examined patient-level characteristics (age, race, gender, cancer type, and received patient navigation) and hospital-level characteristics (board-certified palliative physician, inpatient palliative care beds, and hospice ownership). Outcomes included hospice (within 90 vs 3 days of death). Relative risks (RR) and 95% confidence intervals evaluated the association between patient- and hospital-level characteristics and hospice outcomes using generalized log-linear models with Poisson distribution and robust variance estimates.
RESULTS: Of 12,725 cancer decedents, 4,142 (33%) did not utilize hospice. "No hospice" was associated with non-white (RR 1.24, 95% CI 1.17, 1.32) and non-navigated patients (RR 1.17, 95% CI 1.10, 1.25), and those at a hospital with inpatient palliative care beds (RR 1.15, 95% CI 1.10, 1.21). "Late hospice" (20%; n=1,458) was associated with being male (RR 1.31, 95% CI 1.19, 1.44) and seen at a hospital without inpatient palliative care beds (RR 0.82, 95% CI 0.75, 0.90).
CONCLUSION: Hospice utilization differed by patient and hospital characteristics. Patients who were non-white, and non-navigated; and, hospitals with inpatient palliative care beds were associated with no hospice. Research should focus on ways to improve hospice utilization in Deep South older cancer patients.
BACKGROUND: Cancer patients who have reached the terminal stage despite attempts at treatment are likely to experience various problems, particularly as they encounter increasing difficulty in doing what they were able to do easily, and their physical symptoms increase as the disease advances. The purpose of this study is to explore how terminal cancer patients who have not clearly expressed a depressed mood or intense grief manage their feelings associated with anxiety and depression.
METHODS: Eleven terminally ill patients with cancer who were receiving symptom-relieving treatment at home or in palliative care units were interviewed. Interviews were generally conducted weekly, two to five times for each participant. In total, 33 interviews were conducted, and the overall interview time was 2027 min. Data were analyzed via qualitative methods.
RESULTS: The following five themes were extracted regarding the experience of managing feelings associated with anxiety and depression when facing death: "I have to accept that I have developed cancer," "I have to accept the undeniable approach of my own death," "I have to accept my need for assistance," "I have to accept this unsatisfactory circumstance" and "I have to accept this as my destiny and an outcome of my life."
CONCLUSION: The present study revealed key themes related to how patients come to terms with their impending death. Nurses are required to comprehend the patients' complicated mental patterns that are expressed in their daily languages. Furthermore, the findings clarify the necessity for nurses to help patients understand the acceptance of a terminal disease state during a patient's final days.