Inpatient Hospice Care Research Articles

Pharmacists find purpose in end-of-life care

Pharmacists find purpose in end-of-life care

Nurse roles in the advance directive system in Korea.

In 2016, the Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care was implemented in Korea, providing a broad framework for end-of-life decision-making for the first time and making advance directives legally recognized documents. This Act can correct long-standing under-recognition of patients as valid decision makers for their own treatment choices. However, limited recognition of patient self-determination, rigid legal forms for documenting patient wishes, and the roles of family under the Act may pose challenges both to patients and nurses. This paper critiques whether this newly introduced system of advance directives can truly guarantee protection of the patient's interests and respect for patient autonomy in real life​, and discusses ethical and legal issues regarding the Act. We reviewed the current system of advance directives by raising three questions: (1) Do advance directives reflect a competent person's voluntary and informed choice?, (2) Are advance directives applicable in diverse clinical situations?, and (3) Does the Korean advance directive system ensure that such directives are honored in reality? Although the Act is an important first step in respecting patient autonomy in end-of-life decision-making, it remains inadequate as it fails to provide thorough guidance in terms of the quality of writing process, applicability, and the guaranteed effects of advance directives. As nurses are best situated for addressing these limitations due to their roles and competencies in clinical practice, expanding the roles of nurses in every stage of advance directive practice could help achieve the original purpose of advance directives. This calls for a policy that promotes an expanded role of nurses to improve the quality of advance directive practice.

General Inpatient Hospice Care #415.

General Inpatient Hospice Care #415.

Translation, cultural adaptation and validation of the Chinese version of the Carer Support Needs Assessment Tool for family caregivers of cancer patients receiving home-based hospice care

BackgroundFamily caregivers need to be supported in caring for patients at the end of life, but practical tools to assess their support needs have been missing in China. So this study aimed to culturally adapt and validate the Carer Support Needs Assessment Tool (CSNAT).MethodsCross-cultural adaptation of the original CSNAT for a Chinese setting was performed according to Brislin’s translation guidelines. A pilot study was conducted with 15 Chinese family caregivers of cancer patients receiving hospice home care and 5 medical staff. A cross-sectional survey of 205 family caregivers was conducted from December 2018 to May 2019 at a home-based hospice care institute in Shenzhen, China. The validation procedure comprised the establishment of (1) content validity by a group of six experts; (2) face validity by 15 family caregivers; (3) criterion validity by calculating Spearman’s correlations between the CSNAT and caregiving burden, caregiving preparedness and quality of life scales; (4) internal consistency using Cronbach’s alpha.ResultsThe CSNAT demonstrated good face validity and good content validity. CSNAT scores showed clear positive correlations with caregiving burden and negative correlations with preparedness for caregiving and quality of life. Internal consistency was high (Cronbach’s alpha = 0.899), although such reliability testing is not recommended for this tool.ConclusionsThe Chinese version of the CSNAT is a valid tool that is appropriate for identifying needs of family caregivers of cancer patients in home-based hospice care.

Study recruitment factors in advanced cancer: the Prognosis in Palliative care Study II (PiPS2) - a multicentre, prospective, observational cohort project

ObjectivesThe Prognosis in Palliative care Study II (PiPS2) was a large multicentre observational study validating prognostic tools in patients with advanced cancer. Many palliative care studies fail to reach their...

Hospital at home: home-based end-of-life care.

The policy several countries is to provide people with a terminal illness the choice of dying at home; this is supported by surveys that indicate that the general public and people with a terminal illness would prefer to receive end-of-life care at home. This is the fifth update of the original review. To determine if providing home-based end-of-life care reduces the likelihood of dying in hospital and what effect this has on patients' symptoms, quality of life, health service costs and caregivers compared with inpatient hospital or hospice care. We searched CENTRAL, Ovid MEDLINE(R), Embase, CINAHL, and clinical trials registries to 18 March 2020. We checked the reference lists of systematic reviews. For included studies, we checked the reference lists and performed a forward search using ISI Web of Science. We handsearched palliative care journals indexed by ISI Web of Science for online first references. Randomised controlled trials evaluating the effectiveness of home-based end-of-life care with inpatient hospital or hospice care for people aged 18 years and older. Two review authors independently extracted data and assessed study quality. When appropriate, we combined published data for dichotomous outcomes using a fixed-effect Mantel-Haenszel meta-analysis to calculate risk ratios (RR) with 95% confidence intervals (CI). When combining outcome data was not possible, we reported the results from individual studies. We included four randomised trials and found no new studies from the search in March 2020. Home-based end-of-life care increased the likelihood of dying at home compared with usual care (RR 1.31, 95% CI 1.12 to 1.52; 2 trials, 539 participants; I2 = 25%; high-certainty evidence). Admission to hospital varied among the trials (range of RR 0.62, 95% CI 0.48 to 0.79, to RR 2.61, 95% CI 1.50 to 4.55). The effect on patient outcomes and control of symptoms was uncertain. Home-based end-of-life care may slightly improve patient satisfaction at one-month follow-up, with little or no difference at six-month follow-up (2 trials; low-certainty evidence). The effect on caregivers (2 trials; very low-certainty evidence), staff (1 trial; very low-certainty evidence) and health service costs was uncertain (2 trials, very low-certainty evidence). The evidence included in this review supports the use of home-based end-of-life care programmes for increasing the number of people who will die at home. Research that assesses the impact of home-based end-of-life care on caregivers and admissions to hospital would be a useful addition to the evidence base, and might inform the delivery of these services.

Terminal Delirium in Hospice: The Experiences and Perspectives of Caregivers Providing Care to Terminally Ill Patients in Home Settings.

Little is known about the experiences of caregivers who provide care to persons with terminal delirium (TD) in home settings. This scarcity of information is suggestive that further research is needed about care for hospice patients with delirium in the home and community. To elicit views, feelings, and end-of-life care experiences of primary caregivers assisting dying persons with TD in hospice at home. Qualitative, exploratory, cross-sectional study design was chosen. In-depth semistructured interviews explored caregiver experiences in caring for persons with TD. Qualitative thematic framework analysis was used. Fifteen bereaved adult primary caregivers who received services from a hospice care program affiliated with a large nonprofit health system in the US Midwest. Caregiver experiences were broad and reflected 4 major themes: symptomology, coping, effective and noneffective interventions, and support. The most distressing factors for caregivers were behaviors and symptomology of TD. They did not know what to say, how to respond, and how best to behave with someone who had delirium. Many caregivers had the impression that medication does not lessen delirium symptoms and that nonpharmacologic interventions are effective and beneficial only when they were important and meaningful to patients before delirium onset. This study added new knowledge from direct and personal perspectives of caregivers providing end-of-life care to patients at home. Understanding developed about provision of care to someone with TD in home hospice. Improved comprehension of caregiver experiences can help professional hospice and palliative care staff better prepare caregivers for when patients have TD.

COVID-19 Pandemic Impacts on U.S. Hospice Agencies: A National Survey of Hospice Nurses and Physicians.

Hospice agencies face unique challenges during times of widespread public health emergencies. The pandemic of novel coronavirus disease COVID-19 is widely affecting global healthcare systems. This study assesses effects of the COVID-19 pandemic on U.S. hospice agencies, staff, and patients as reported by hospice agency staff. An anonymous electronic survey was developed. Free-text comments were assessed for impacts on hospice agencies, staff, and patients and their families. The target audience was members of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association who self-identified as being active with hospice agencies in the United States. Reported impacts include inadequate supplies of personal protective equipment, changes in hospice services, and decreased access by hospice personnel to patients in long term care facilities. Flow of patients through hospice care settings was impeded. Agencies experienced changes in workforce availability and increased emotional support needs of staff. Patient and families experienced increased bereavement needs. Nearly one-third of respondents reported negative effects on patient outcomes, such as inadequate symptom management and negative psychosocial effects. Respondents indicate that the COVID-19 pandemic had negative effects on both hospice patient care and hospice agency functioning. Hospice agencies appear to face challenges unique among U.S. healthcare agencies due to their service delivery model and focus on interdisciplinary care. There is need for further exploration of the effects that the COVID-19 pandemic has on hospice agencies in order to improve care for their patient population during public health emergencies.

Self-compassion In Hospice and Palliative Care: A Systematic Integrative Review.

Those involved with hospice and palliative care, including nurses, will inevitably experience or be exposed to suffering. Self-compassion represents a personal resource and support for self-care, ensuring that needs are not neglected particularly during times of suffering. However, the empirical evidence for self-compassion in hospice and palliative care is yet to be reviewed systematically. To synthesize the evidence on self-compassion in hospice and palliative care patients, their relatives, and health care professionals, we conducted a systematic integrative review using the Preferred Reporting Items for Systematic Reviews and Meta-analyses statement. For patients, self-compassion was associated with reduced stress, anxiety, shame, depressive symptoms, fear of cancer recurrence, and loneliness. It was also associated with increased social capital, self-soothing, mindfulness, compassion, causal reasoning ability, psychosocial and spiritual well-being, legacy, courage, and commitment. For health care professionals, self-compassion was associated with increased capacity for self-care, mindfulness, and professional quality of life and a decrease in perceived burnout risk and secondary traumatic stress. No studies were found to involve patients' relatives. Self-compassion seems to be an important resource in hospice and palliative care. It supports self-care and alleviates suffering by improving the social, psychosocial, and spiritual well-being of patients and health care professionals, including hospice and palliative care nurses. Future research should include care patients' relatives.

Effects of Hospice Care for Terminal Head and Neck Cancer Patients: A Nationwide Population-Based Matched Cohort Study

Background: Head and neck cancer was the fourth-most common cause of cancer death among Taiwanese men in 2018. Hospice care has been proven to reduce the use of invasive medical interventions and expenditures in caring for cancer patients. Aim: This study examined the effects of hospice care for terminal head and neck cancer patients. Design: A matched cohort study was used to compare the use of invasive interventions and expenditures among hospice care and nonhospice care patients. Setting/Participants: The investigated patients consisted of patients who died of head and neck cancer in Taiwan from 2004 to 2013 and were included in the Registry for Catastrophic Illness Patients in Taiwan and the Taiwan National Health Research Insurance Database. Results: A total of 45,948 terminal head and neck cancer patients were identified, and 9883 patients remained in each group after matching for comorbidities. After that matching, the rates of intensive care unit admission (23.9% vs. 38.94%, p < 0.0001), endotracheal intubation (10.05% vs. 31.32%, p < 0.0001), cardiopulmonary resuscitation (2.93% vs. 20.18%, p < 0.0001), defibrillation (0.51% vs. 4.36%. p < 0.0001), ventilator use (21.92% vs. 46.47%, p < 0.0001), blood transfusion (71.25% vs. 73.45%, p = 0.006), and hemodialysis (1.06% vs. 3.26%. p < 0.0001) were significantly lower in the hospice group than the nonhospice group, although the rates of parenteral nutrition for the two groups were similar (7.74% vs. 7.97%, p = 0.5432). The mean medical expenditure per person in the six months before death was 460,531 New Taiwan Dollar (NTD) for the nonhospice group and 389,079 NTD for those provided hospice care for more than three months, which was the lowest amount among various hospice enrollment durations. Conclusions: Hospice care can effectively reduce the use of invasive medical interventions in caring for terminal head and neck cancer patients and may improve their quality of death. Moreover, hospice care enrollment for more than three months can save on unnecessary medical expenditures for terminal head and neck cancer patients.

Risk assessment index: Frailty assessment tool for estimation of duration of inpatient hospice care

This study was designed to assess the Risk Analysis Index scores for veterans admitted to an inpatient VA hospice unit during calendar year 2019. Using this frailty evaluation, we were hoping to predict length of stay for improved staffing and utilization of beds. Seventy percent of the veterans admitted had scores of 40-70 and survival of less than 6 weeks.

When Home Hospice Patients Discharge to Nursing Home: A Mixed Method

Background: Hospice care is to provide necessary medical care and support for patients and the families at the end of life (EOL). Hospice care patients typically withdraw from aggressive treatment. Even though home hospice has been shown to improve the quality of care, home hospice patients still revoke the services for various reasons. A little is known about where home hospice patients are being transferred. This study aims to address this gap and explore common reasons for home hospice discharge and placements, where patients being transferred other than home. Methods: Data were retrieved from the 2007 National Home and Hospice Care Survey (NHHCS). NHHCS is one in a series of nationally representative sample surveys of U.S. home health and hospice agencies. Results: Within identified home hospice patients, approximately 82.1% were deceased at discharge, and 846 (18.2%) were discharged for other reasons, including patients being stabilized or improved (30.2%), aggressive treatment (31.8%), moved (e.g., geographically, 13.5%) and others. Patients lived with a spouse were less likely to utilize external resources, like volunteers, thereby more likely to discharge patients to long-term facilities. Discussion: The current study suggest that it is difficult for the family to give all remaining care for their loved ones despite the support and resources for those home hospice patients. The characteristics of those who transferred to nursing facilities from home hospice will be discussed throughout.

A non-lab nomogram of survival prediction in home hospice care patients with gastrointestinal cancer

BackgroundPatients suffering from gastrointestinal cancer comprise a large group receiving home hospice care in China, however, little is known about the prediction of their survival time. This study aimed to develop a gastrointestinal cancer-specific non-lab nomogram predicting survival time in home-based hospice.MethodsWe retrospectively studied the patients with gastrointestinal cancer from a home-based hospice between 2008 and 2018. General baseline characteristics, disease-related characteristics, and related assessment scale scores were collected from the case records. The data were randomly split into a training set (75%) for developing a predictive nomogram and a testing set (25%) for validation. A non-lab nomogram predicting the 30-day and 60-day survival probability was created using the least absolute shrinkage and selection operator (LASSO) Cox regression. We evaluated the performance of our predictive model by means of the area under receiver operating characteristic curve (AUC) and calibration curve.ResultsA total of 1618 patients were included and divided into two sets: 1214 patients (110 censored) as training dataset and 404 patients (33 censored) as testing dataset. The median survival time for overall included patients was 35 days (IQR, 17–66). The 5 most significant prognostic variables were identified to construct the nomogram among all 28 initial variables, including Karnofsky Performance Status (KPS), abdominal distention, edema, quality of life (QOL), and duration of pain. In training dataset validation, the AUC at 30 days and 60 days were 0.723 (95% CI, 0.694–0.753) and 0.733 (95% CI, 0.702–0.763), respectively. Similarly, the AUC value was 0.724 (0.673–0.774) at 30 days and 0.725 (0.672–0.778) at 60 days in the testing dataset validation. Further, the calibration curves revealed good agreement between the nomogram predictions and actual observations in both the training and testing dataset.ConclusionThis non-lab nomogram may be a useful clinical tool. It needs prospective multicenter validation as well as testing with Chinese clinicians in charge of hospice patients with gastrointestinal cancer to assess acceptability and usability.

The effect of education on nursing personnel's knowledge and attitudes regarding the use of integrative care techniques with hospice and palliative care patients.

To examine the effect of education on nursing personnel's knowledge and attitudes regarding the use of hand massage, breathing techniques, and essential oils with hospice and palliative care patients. Unrelieved, end of life pain is common among hospitalized patients on hospice and palliative care units. Integrative care techniques such as hand massage, breathing techniques, and essential oils can be available to use with these individuals. Nursing personnel are often unaware of other techniques that are not a traditional pharmacology approach to pain. A quasi-experiment was conducted to evaluate the effect of an educational intervention on nursing personnel's knowledge and attitudes regarding the use of three integrative care techniques (hand massage, breathing techniques, and essential oils) with hospice and palliative care patients in an acute care setting. Data on knowledge and attitudes were collected pre- and postintervention. Following the intervention, improvements in nursing personnel's attitudes and knowledge toward the use of the three techniques were found. Results of this study suggest that education of nursing personnel may positively influence knowledge and attitudes toward providing hand massage, breathing techniques, and essential oil for end of life patients.

Methodological Reflections on the Recruitment of Adult Child-Parent Dyads for End-of-Life Research in Germany: Experiences From the Dy@EoL Study

ContextAlthough high-quality research with patients and family members is needed to improve palliative care, difficulties in recruitment are often reported. ObjectivesThe present article analyzes the authors' experiences in recruiting participants of two types of dyads for the study “Dy@EoL–Interaction at the end of life in dyads of parents and adult children”. Recruitment challenges and factors found to improve recruitment are examined. MethodsBetween February 2018 and November 2019, the research team cooperated with diverse inpatient and ambulatory palliative and hospice care providers to recruit both dyads. Cooperation strategies and adaptations were protocolled. Data on (non-)participation were recorded and analyzed using descriptive statistics. ResultsThe recruitment rate was 34.6% (dyad 1, terminally ill adult children with parents: 36.4%; dyad 2, terminally ill parents with adult children: 33.9%). In total, 82.2% of participants were recruited from inpatient settings. The research team has applied various strategies, such as public outreach activities and the extension of recruitment partners. The study protocol was adapted at an early stage to include single participants. Of all patients, 47.7% participated without their dyad partner. The main reason to exclude their family member was the patients' wish to protect them from extraburden. ConclusionThe recruitment was more successful in inpatient than in ambulatory settings. The extension of recruitment partners was beneficial to recruit participants from ambulatory contexts. The inclusion of single participants was conducive as a great number of patients participated without their dyad partner. Sharing the obtained experiences can be helpful for future research planning.

Palliative, Hospice, and End-of-Life Care and OBRA Regulations

Palliative, Hospice, and End-of-Life Care and OBRA Regulations

Palliative Paracentesis in the Home Setting: A Case Series.

Management of ascites-related symptoms in home hospice and palliative care patients can be challenging. Ultrasound-guided paracentesis is a standard intervention for this indication, but generally requires transfer to a hospital or outpatient interventional-radiology (IR) setting; thus, such interventions are often not practical or attainable for home hospice and palliative care patients. To describe a mobile, in-home service that provides home-based palliative paracentesis (HBPP) as an interventional palliative option for patients with distressing symptoms related to ascites. Retrospective case series. Setting/Subjects: Thirty patients with ascites, confirmed by portable bedside ultrasound, who underwent HBPP at their residence. Thirty-three patients were referred for HBPP for symptomatic abdominal distention from March 1, 2019 to March 1, 2020. Thirty (91%) patients had ultrasound-confirmed ascites and received HBPP. All 30, verbalized appreciable symptom relief post-intervention. There were no reported post-procedural complications. Home-based palliative paracentesis is a safe, effective, and convenient intervention for hospice and palliative care patients with symptomatic ascites.

The Association Between Hospital End-of-Life Care Quality and the Care Received Among Patients With Heart Failure

ContextImproving end-of-life care (EOLC) quality among heart failure patients is imperative. Data are limited as to the hospital processes of care that facilitate this goal. ObjectivesTo determine associations between hospital-level EOLC quality ratings and the EOLC delivered to heart failure patients. MethodsRetrospective analysis of the Veterans Health Administration (VA) and the Bereaved Family Survey data of heart failure patients from 2013 to 2015 who died in 107 VA hospitals. We calculated hospital-level observed-to-expected casemix-adjusted ratios of family reported excellent EOLC, dividing hospitals into quintiles. Using logistic regression, we examined associations between quintiles and palliative care consultation, receipt of chaplain and bereavement services, inpatient hospice, and intensive care unit death. ResultsOf 6256 patients, mean age was 77.4 (SD = 11.1), 98.3% were male, 75.7% were white, and 18.2% were black. Median hospital scores of “excellent” EOLC ranged from 41.3% (interquartile range 37.0%–44.8%) in the lowest quintile to 76.4% (interquartile range 72.9%–80.3%) in the highest quintile. Patients who died in hospitals in the highest quintile, relative to the lowest, were slightly although not significantly more likely to receive a palliative care consultation (adjusted proportions 57.6% vs. 51.2%; P = 0.32) but were more likely to receive chaplaincy (92.6% vs. 81.2%), bereavement (86.0% vs. 72.2%), and hospice (59.7% vs. 35.9%) and were less likely to die in the intensive care unit (15.9% vs. 31.0%; P < 0.05 for all). ConclusionPatients with heart failure who die in VA hospitals with higher overall EOLC quality receive more supportive EOLC. Research is needed that integrates care processes and develops scalable best practices in EOLC across health care systems.

Role of Physiotherapy in Hospice Care of Patients with Advanced Cancer: A Systematic Review.

To review the role of physiotherapy and its effects in hospice care of patients with advanced cancer. A comprehensive literature search was performed in PubMed, Scopus, Web of Science, CINAHL and PEDro. The search strategy was devised, articles were screened, and 2 independent reviewers conducted data extraction. Eligible studies were methodologically assessed for quality rating using modified Downs and Black's checklist. The extracted data was summarized according to site/stage of cancer, details of intervention, outcome measures and the results. The total number of screened articles were 2102, out of which 9 were identified as suitable for the purposes of comprehensive review. The studies included exercise therapy, massage therapy, relaxation therapy, compression bandaging and use of TENS as the various physiotherapy interventions under consideration. Studies were generally of low to moderate quality. A broad range of outcomes were employed including physical symptoms like loss of function, pain, fatigue, edema, sleep disturbances and quality of life. The findings of the studies supported the benefits of the interventions. A structured exercise protocol, massage therapy, TENS and compression bandaging are useful in alleviating the symptoms experienced by patients with advanced cancer in hospice care. The reduced symptom burden has reflected as an improvement in their quality of life. However, there is a further need for high quality studies to strengthen the findings of this review.

“Are They Saying It How I'm Saying It?” A Qualitative Study of Language Barriers and Disparities in Hospice Enrollment

ContextLanguage barriers contribute significantly to disparities in end-of-life (EOL) care. However, the mechanisms by which these barriers impact hospice care remains underexamined. ObjectivesTo gain a nuanced understanding of how language barriers and interpretation contribute to disparities in hospice enrollment and hospice care for patients with limited English proficiency. MethodsQualitative, individual interviews were conducted with a variety of stakeholders regarding barriers to quality EOL care in diverse patient populations. Interviews were audiorecorded and transcribed verbatim. Data were coded using NVivo 11 (QSR International Pty Ltd., Melbourne, Australia). Three researchers analyzed all data related to language barriers, first individually, then in group meetings, using a grounded theory approach, until they reached consensus regarding themes. Institutional review board approval was obtained. ResultsTwenty-two participants included six nurses/certified nursing assistants, five physicians, three administrators, three social workers, three patient caregivers, and two chaplains, self-identifying from a variety of racial/ethnic backgrounds. Three themes emerged regarding language barriers: 1) structural barriers inhibit access to interpreters; 2) variability in accuracy of translation of EOL concepts exacerbates language barriers; and 3) interpreters' style and manner influence communication efficacy during complex conversations about prognosis, goals of care, and hospice. Our theoretical model derived from the data suggests that Theme 1 is foundational and common to other medical settings. However, Theme 2 and particularly Theme 3 appear especially critical for hospice enrollment and care. ConclusionLanguage barriers present unique challenges in hospice care because of the nuance and compassion required for delicate goals of care and EOL conversations. Reducing disparities requires addressing each level of this multilayered barrier.