Inpatient Hospice Care Research Articles

"If We Build It, Will They Come?" A Cohort Study of Family Utilization of a Pediatric-Specific Hospice Home.

Objective: To determine whether families would make use of a pediatric-specific inpatient hospice facility for end-of-life care for children. Background: Location of end-of-life care and death are important considerations when treating children with life-limiting conditions. There is very limited research on utilization of an inpatient hospice facility for end-of-life care if a pediatric-specific facility is available. We examined changes in family utilization of inpatient hospice services with the availability of an inpatient pediatric hospice facility (PHF). Methods: We conducted a retrospective cohort study with data collected on location of end-of-life care and death five years prior to and five years following the opening of a PHF that receives referrals from a large children s hospital in United States. Two data sources from the hospice organization were used: (1) a dataset on origins and outcomes of referrals to pediatric inpatient hospice care and (2) a dataset on location of death for all pediatric patients who had any contact with the hospice system. Chi-square analyses were conducted to assess the associations between the PHF opening and referral outcomes and location of death. Results: Significant results were found with respect to both referral outcomes and location of death. Engagement in inpatient hospice care increased between 2- and 10-fold following the opening of the inpatient PHF. The percent of patients who died in an inpatient hospice unit also increased significantly with the opening of the pediatric facility. Discussion: Results of this study show that providers are more likely to refer, and families are more likely to use inpatient hospice services when pediatric facilities are available. These results are important for establishing an evidence base in support for increasing access to PHFs.

Survival Prediction in Home Hospice Care Patients with Lung Cancer Based on LASSO Algorithm.

PurposeThe aim of the present study was to develop a nomogram for prognostic prediction of patients with lung cancer in hospice.MethodsThe data was collected from 1106 lung cancer patients in hospice between January 2008 and December 2018. The data were split into a training set, which was used to identify the most important prognostic factors by the least absolute shrinkage and selection operator (LASSO) and to build the nomogram, while the testing set was used to validate the nomogram. The performance of the nomogram was assessed by c-index, calibration curve and the decision curve analysis (DCA).ResultsA total of 1106 patients, including 835 (75%) from the training set and 271 (25%) from testing set, were retrospectively analyzed in this study. Using the LASSO regression, 5 most important prognostic predictors that included sex, Karnofsky Performance Scale (KPS), quality-of-life (QOL), edema and anorexia, were selected out of 28 variables. Validated c-indexes of training set at 15, 30, and 90 days were .778 [.737-.818], .776 [.743-.809], and .751 [.713-.790], respectively. Similarly, the validated c-indexes of testing set at 15, 30, and 90 days were .789 [.714-.864], .748 [.685-.811], and .757 [.691-.823], respectively. The nomogram-predicted survival was well calibrated, as the predicted probabilities were close to the expected probabilities. Moreover, the DCA curve showed that nomogram received superior standardized net benefit at a broad threshold.ConclusionsThe study built a non-lab nomogram with important predictor to analyze the clinical parameters using LASSO. It may be a useful tool to allow clinicians to easily estimate the prognosis of the patients with lung cancer in hospice.

Care for a Dying Patient: EMS Perspectives on Caring for Hospice Patients.

EMS providers frequently encounter patients in end-of-life situations. These situations can become ethically challenging depending on the nature of the event, availability of advance directives, and overall understanding of the situation by the patient and caregivers. This is particularly true for patients who are enrolled in Hospice, a specific form of end-of-life care available to patients with a terminal illness and expected lifespan of less than six months. This study aimed to survey the state of Michigan's EMS providers regarding encounters with hospice patients to better understand challenges caring for this population and to identify any need for additional education. An anonymous electronic survey was distributed via agency medical directors and a statewide listserv to all licensed EMS providers. Responses were collected via RedCap. Descriptive statistics were calculated. A total of 706 responses were received. Most responses were from paramedics (55%) or EMTs (34%). 96% indicated having at least one encounter with a hospice patient and 66% had greater than 10 encounters. Only 24% had received formal education on the care of hospice patients. A high percentage (86%) indicated interest in additional training in this area. Challenges identified among providers were inaccessible advance directives (72%), pressure from family for more aggressive treatment (61%), and difficulty contacting hospice personnel (48%). Educational gaps may be narrowed with additional end-of-life specific curricular components, with EMS providers expressing a strong desire for such training.

A simple risk score list can be used to predict the occurrence of delirium in patients admitted to inpatient hospice care: A medical record study.

This study aimed to examine whether the 10-item Risk Score List (RSL) accurately predicts delirium in patients admitted to inpatient hospice care and whether this instrument can be simplified. Determining the risk for developing delirium can help to treat these patients in a timely manner. This was a retrospective medical record study in patients who died in 2019 or 2020 in three hospices. Predictive values were examined using Cox regression analysis, crosstabs, and C-statistic. In total, 240 patients were included. Median age at admission was 78 (IQR 70-84) years. Primary diagnosis most often was cancer (n = 186, 78%); 173 (72%) patients had an increased risk of delirium according to RSL, of whom 120 (69%) developed delirium. Overall, 147 (61%) patients developed delirium. The RSL significantly predicted future delirium (HR 3.25, CI 1.87-5.65, p < 0.01) and had a sensitivity of 85%, a specificity of 43%, positive predictive value of 62%, negative predictive value of 73%, and a C-statistic of 0.64. Simplifying the RSL to four items still significantly predicted future delirium, with similar predictive values. Delirium occurs in more than half of patients admitted to hospice care. The RSL can be simplified to four items, without compromising on predictive accuracy.

Strategies Addressing the Challenges of the COVID-19 Pandemic in Long-Term, Palliative and Hospice Care: A Qualitative Study on the Perspectives of Patients’ Family Members

Patients in long-term, palliative, and hospice care are at increased risk of a severe course of COVID-19. For purposes of infection control, different strategies have been implemented by the respective health care facilities, also comprising visitation and other forms of contact restrictions. The aim of the present study was to examine how these strategies are perceived by family members of patients in these settings. An exploratory, qualitative approach was used to examine perceptions of policies and strategies using partially standardized guided interviews analyzed by means of a thematic approach. Interviews were conducted with 10 family members of long-term, palliative, and hospice care patients. Interviewees were between 30 and 75 years old. Because of the pandemic-related measures, respondents felt that their basic rights were restricted. Results indicate that perceptions of strategies and interventions in long-term, palliative, and hospice care facilities are particularly influenced by the opportunity to visit and the number of visitors allowed. Strict bans on visits, particularly during end-of-life care, are associated with a strong emotional burden for patients and family members alike. Aside from sufficient opportunities for visits, virtual communication technologies need to be utilized to facilitate communication between patients, families, and caregivers.

Development of A User-Centered Design Framework for Palliative and Hospice Care Patients for a Better Quality of Life Experience

Goal Three of the Sustainable Development Goals emphasizes the concept of “leaving no one behind”; a model for inclusivity and coherence. Amongst those that are often “left behind” are patients at the end stage of their life due to a terminal illness or a medical diagnosis. These are often left to die without thought to the quality of life that they receive before their demise, and many experience this stage at home due to fear of expenses, or in a best-case scenario at a hospital to help alleviate or manage pain. In many places worldwide, this is where palliative and hospice care come in and focus on the End-of-Life care provided to patients who fit the criteria.The number of architecture and design related studies in this field are not numerous, and those that are there do not focus on the patient as a user with rights, but merely as a patient that is there. The concept of a user-centered design is forgotten in midst of all the pain and suffering of all concerned, namely, the patient, his beloved, and his caregivers. However, focusing on this nexus at the core of the design project may help promote this painful and stressful time in life and induce serenity and acceptance in a time that is often dark and ominous. This research aims to develop a design framework for places that deal with End-of-Life care and how to provide a better quality of End-of-Life experience for terminally ill patients.

Construction of Nursing Staff Training Program for Hospice Nursing Specialists in China

Based on the analysis of existing responsibilities, the formation of specialist nurse hospice care ability framework, develop the items of hospice care course knowledge system, using literature research method, and through the depth interview of hospice care related experts and patients' families, understand the specialist nurse hospice care knowledge level and learning needs, build the hospice care course knowledge system, form a talent training plan. The specific content includes the training objectives, content, methods and the corresponding assessment mechanism.

Spirituality Concern Toward Patients in Hospice Care during COVID-19 Pandemic in China.

Tension, anxiety, or fear spread all over the world during COVID-19 pandemic. How health professionals provide terminally ill patients with humanistic care to deal with fear is worth consideration. A more abundant spirituality concern in the body-mind-spirit care mode on patients in hospice care is appied in our practice.

The burden in palliative care assistance: A comparison of psychosocial risks and burnout between inpatient hospice and home care services workers.

Literature suggests that home care professionals could be at higher risk of burnout than their colleagues in hospital settings, but research on home-based palliative care is still limited. Our study investigates psychosocial risk factors and burnout among workers involved in palliative care, comparing inpatient hospice, and home care settings. A cross-sectional study was carried out in a single palliative care organization providing inpatient hospice-based and home care-based assistance in a large urban area of Northern Italy. Participants completed a self-administered questionnaire collecting socio-demographic and occupational data, psychosocial risk factors, and burnout scales (Psychosocial Safety Climate 4; Conflict and Offensive Behavior - COPSOQ II; Work Life Boundaries; Work-home Interaction; Peer Support - HSE; Copenhagen Burnout Inventory). The study sample included 106 subjects (95% of the overall eligible working population) who were predominantly female (68%) and nurses (57%), with a mean age of 41 years. Compared to inpatient hospice staff, home care workers reported more frequent communications with colleagues (p = 0.03) and patients/caregivers (p = 0.01), while there were no differences in the perception of work intrusiveness. Inpatient hospice workers showed lower peer support (p = 0.08) and lower psychosocial safety climate (p = 0.001) than home care colleagues. The experience of aggressive behaviors was rare, and it was relatively more frequent among inpatient hospice workers, female workers, and health assistants. Average scores of burnout scales were similar for both groups except for caregiver-related burnout, which was higher among inpatient hospice workers compared to home care colleagues (p = 0.008). The number of subjects at risk for work-related burnout was similar for both groups. Our study confirms the presence of psychological and physical fatigue in both home-based and inpatient hospice palliative care. Results suggest that home care assistance may not be characterized by higher psychological burden compared to inpatient hospice setting. Given the general tendency to increase home-based care in our aging population, it is essential to broaden the knowledge of psychosocial risks in this specific context to properly protect workers' health.

Predictors and Assessment of Hospice Use for End-Stage Renal Disease Patients in Taiwan.

Objectives: Hospice and early palliative care are generally considered as an alternative and supportive care to offer symptoms relief and optimize the quality of life among end-stage renal disease (ESRD) patients, but hospice care remains underutilized. This study aimed to examine patient and health system characteristics and develop a patient assessment scale to evaluate ESRD patients for hospice care after the implementation of non-cancer hospice care reimbursement policy in 2009 in Taiwan. Method: We conducted a retrospective cohort study using nationwide population-based datasets. Adult long-term dialysis patients between 2009 and 2012 were included. Multivariable logistic regression and the Firth penalized likelihood estimation were used to estimate the likelihood of receiving hospice care. A receiver operating characteristic curve (ROC) analysis and C-statistic were calculated to determine the optimal models for a patient assessment of hospice use. Results: Patients who were older, comorbid with anemia (odds ratio [OR] 3.53, 95% CI 1.43–8.70) or sepsis (OR 1.62, 95% CI 1.08–2.44), with longer dialysis durations, more hospitalizations (OR 4.68, 95% CI 2.56–8.55), or primary provider care with hospice (OR 5.15, 95% CI 2.80–9.45) were more likely to receive hospice care. The total score of the patient assessment scale of hospice care was 0–28 with a cut-off value of 19 based on the results of the receiver operating characteristic curve. Conclusion: Given the “Patient Right to Autonomy Act” implemented in Taiwan in 2019 to promote the concept of a “good quality of death”, this patient assessment scale may help health professionals target ESRD patients for hospice care and engage in shared decision making and the advance care planning process.

A Qualitative Study of the Impact of COVID-19 on Hospice and Home-Based Palliative Care in Taiwan

COVID-19 has had a tremendous impact on individuals and health care, particularly among those with serious illnesses. Although Taiwan initially reported low rates of COVID-19 (20.7 cases per million in 2020), by early 2021 the Alpha variant began spreading in Taiwan, which went into a soft lockdown from May to July. This study aimed to investigate the impact of COVID-19 on Hospice and Home-Based Palliative Care (HBPC) patients, family, and medical team member in Taiwan during different COVID-related time points. From November 2020 to May 2021, we conducted semi-structured interviews with 2 patient, 5 caregivers, and 8 medical team members in the hospice and HBPC setting to elicit their views about the impact of COVID-19 on care. Content analysis was used to guide the analysis of themes. Two researchers independently coded transcripts and met to reconcile codes. Results showed varying impact across the time points. In 2020, patients, caregivers, medical team members felt little impact of COVID-19. However, in 2021, HBPC caregivers reduced the frequency of HBPC visits to lower the household COVID-19 infection risk. Hospice and HBPC team members reported that more caregivers selected HBPC over hospice. They also observed an increase in complicated grief among family survivors following the soft lockdown. The impact of the pandemic on homecare provision increased as prevalence of COVID-19 increased, impacting care and quality of hospice and HBPC. Further research is needed to better understand the impact of the pandemic on the quality of hospice /HBPC and grief experiences.

Hospice delivery models and survival differences in the terminally ill: a large cohort study

ObjectiveA common difficulty at the end of life (EOL) is to determine an appropriate service model, such as hospice share care (HSC), hospice inpatient care (HIC) and hospice home care...

The decision for hospice care in patients with terminal illness in Shanghai: A mixed-method study

ObjectivesTo investigate why patients with terminal illness and their families in Shanghai choose the hospice ward and their decision-making process. MethodsThis was a mixed-method study consisting of a cross-sectional survey and a descriptive qualitative study. Medical decision-makers for patients hospitalized in hospice wards were recruited between September 2019 and July 2021. A medical decision-maker is a family member who makes medical decisions for a patient. All 146 participants completed a self-developed 10-item questionnaire that included five items about their demographic characteristics and five items about the decision-making process. The semi-structured interviews were conducted with nine participants to understand the family’s decision-making process when they chose a hospice ward. The interviews were analyzed using qualitative content analysis. ResultsThe mean age of the 146 participants was 57.6 years old. Of the decision-makers, 56.85% were the patients’ children. Family-dominated discussions involving other family members were the main decision-making mode (84.93%). Patient participation in the decision-making process was reported in 43.15% of families. The participation of doctors (17.81%) and nurses (2.05%) were reported in a small number of families. The most common reason for choosing the hospice ward was the inability to find any other hospital for the patients (82.19%). The most common ways to learn about the service were neighbors and friends (38.36%) and social media (28.77%). Two themes and six categories emerged from the interviews. The first theme was reasons for choosing hospice wards. The reasons included being unable to care for the patients at home, staying in a hospice ward could reduce the psychological stress for home care, being unable to be admitted into tertiary/secondary hospitals, and thinking a hospice ward was a suitable place for the family. The second theme was the decision process of choosing a hospice ward. This theme included the following two categories, i.e., ways to learn about the hospice ward and family-discussion decision mode. ConclusionTo most families having dying patients, a hospice ward is a reasonable and balanced choice after the families experience huge care stress and practical difficulties. The participation of patients should be encouraged in the family discussion so that their wishes can be known. More efforts will be needed to guide the families with dying patients to make reasonable medical choices. Social media can be a good way to improve public awareness of hospice services in the future. Meanwhile, healthcare providers should be more involved in the decision-making process.

‘…you just put up with it for the sake of humanity.’: an exploratory qualitative study on causes of stress in palliative care nursing during the COVID-19 pandemic in Germany

ObjectiveTo explore and analyse causes of stress among nurses in palliative and inpatient hospice care settings in Germany during the COVID-19 pandemic.DesignExplorative, qualitative study using problem-centred interviews. Interview data were...

The Application and Influence of Hospice Care Among Patients with Advanced Esophageal Cancer.

ObjectiveTo investigate the application effect of hospice care in patients with advanced esophageal cancer (EC), provide a practical basis for improving sleep quality, dignity, and subjective well-being, and relieving depression and anxiety in patients with advanced EC.MethodsA randomized cluster sampling method was used to select 60 patients with advanced EC who received routine intervention (control group) and 64 patients with advanced EC who received hospice care (study group). The intervention time was three months, and the self-rated anxiety scale (SAS) before and after the interventions was compared between the two groups. The Hamilton Depression Scale (HAMD), the Pittsburgh Sleep Quality Index (PSQI), the General Well-being Scale (GWB), the Patient Dignity Scale (PDI), and patients’ physical pain state were recorded.ResultsNo significant differences were found in the HAMD, SAS, PSQI, GWB, or PDI scores between the two groups before the interventions (P > 0.05); after the interventions, the HAMD, SAS, PSQI, and PDI scores of the two groups were significantly decreased, and the HAMD, SAS, PSQI, and PDI scores of the study group were lower compared with the control group. The GWB scores of the two groups were significantly increased, and those of the study group were significantly higher compared with the control group; the difference was statistically significant (P < 0.05). After the interventions, pain grades of III and above decreased in both groups to grade II, and pain sensation in the study group was lower compared with the control group; the difference was statistically significant (P < 0.05).ConclusionHospice care can reduce the level of pain related to depression and anxiety in patients with advanced EC and improve their sleep quality, as well as their sense of dignity and subjective well-being.

202 - Music Therapy Intervention to Reduce Caregiver Distress at End of Life: A Feasibility Study

ContextMusic therapy is frequently provided to patients at the end of life, and studies have shown a benefit in relief of symptoms and a positive impact on quality of life (QoL), but little is known regarding the effect of music therapy (MT) on caregivers. Caregivers are at risk for anxiety, emotional distress and experience anticipatory grief as the patient nears death. Caregivers are present with patients and may also benefit from MT.ObjectiveTo assess the impact of MT on caregivers for hospice patients and determine the feasibility of research in this population.MethodsTwenty caregivers of patients hospitalized for general inpatient hospice care were enrolled. MT was provided by a board-certified music therapist, and sessions included pre-MT assessment, 20-45 minutes of MT, and post-MT assessment. Caregiver stress was measured with the Pearlin Role Overload Measure (ROM), QoL was measured with the Linear Analogue Self-Assessment (LASA), and depression and anxiety were measured with the Patient Health Questionnaire for Depression and Anxiety (PHQ-4). These three measures were taken pre-MT, post-MT and 6 months post-MT. Caregivers were also asked to complete a Music Therapy Program Survey post-MT.ResultsThe MT intervention was completed for 15/20 caregivers (75%). Of those who did not complete MT, 2 withdrew prior, 1 was not available, 1 patient passed during the MT session, and 1 patient died prior to MT. 14 caregivers completed pre-MT and post-MT assessments, and 9 caregivers completed assessments at all 3 timepoints. The MT Program Survey (post-MT assessment, n=14) showed 100% of caregivers were very satisfied with MT and would recommend to others, 78% found MT effective for stress relief, 69% for relaxation, 71% for spiritual support, 86% for emotional support, and 71% for feeling of wellness.ConclusionResearch on MT is feasible for acute hospice care caregivers with a majority of caregivers consenting to research and about half completing surveys pre-MT, post-MT, and 6-months post-MT (9/20). Future larger studies should be conducted to better assess the impact of MT on caregivers.

Descriptive study of clinical pharmacist interventions in adult hospice and palliative care at a comprehensive oncology center in Jordan

Few studies have evaluated the role of a clinical pharmacist in hospice and palliative care in oncology. We aimed to describe the intervention of a clinical pharmacist in hospice and palliative care at a comprehensive oncology center in Jordan. A retrospective descriptive study at a comprehensive oncology center in Jordan between 2006 and 2019. Quantifi® pharmacy documentation system was used to retrieve the clinical pharmacists' interventions in three hospice and palliative care settings, inpatient hospice and palliative care, outpatient hospice and palliative care clinics and home health care. Where clinical pharmacists document their interventions, significance and acceptance of the interventions by the physician is done using Quantifi®. Over 13 years, 27,720 documented interventions were retrieved in the three settings of hospice and palliative care: inpatient hospice and palliative care, outpatient hospice and palliative care clinics and home health care setting. The most common reported interventions were drug therapy recommendation/discontinuation (41%), followed by medication reconciliation (21.7%) and patient counseling (16.8%). The medication classes most commonly associated with the hospice and palliative care clinical pharmacist interventions were analgesics (20.9%), antibiotics (19.7%), followed by medications for the nervous system (12.4%). The acceptance rate of the interventions by physicians was around (90%) and 100% of the interventions were considered significant. Our study showed the high impact of the hospice and palliative care clinical pharmacist in oncology providing the high number of clinical pharmacists' interventions.

Analysis of Application Effect of Nutrition Support in Hospice Care for Patients with Advanced Cancer

Analysis of Application Effect of Nutrition Support in Hospice Care for Patients with Advanced Cancer

Hospice and Comfort Care Patient Utilization of Emergency Medical Services

Introduction: Emergency medical services (EMS) were designed to prevent death and disability. When hospice patients call 9-1-1, it can create challenging scenarios for EMS providers, patients, and families. The objective of this investigation is to understand the characteristics of hospice and comfort care patient EMS utilization in Alameda County, California. Methods: This is a 15-month (7/1/2019-10/1/2020) retrospective observational study in Alameda County using electronic patient care reports (PCRs). The search terms "hospice" and "comfort measures only" were applied to PCR narratives. Results: Of the 237,493 EMS provider response calls, 534 (0.2%) were for hospice and comfort care patients. One hundred seventy-four (32.6%) calls were from skilled nursing facilities versus 343 (64.2%) from private residences. Among the most common primary impressions were respiratory complaints (96; 18.0%), altered mental status (96; 18.0%), weakness (58; 10.9%), and cardiac arrest (45; 8.4%). The most common interventions included blood glucose (244; 45.7%), electrocardiogram (181; 33.9%), and intravenous placement (170; 31.8%). Of note, eight (1.5%) patients received cardiopulmonary resuscitation, and an additional eight (1.5%) patients were intubated endotracheally or received a supraglottic airway device for intubation. Sixty-eight (12.7%) patients received medications, the most common of which were fentanyl (17; 3.2%) and albuterol (16; 3.0%). Of note, five (0.9%) patients received naloxone. Ultimately, 468 (87.6%) patients were transported by EMS. Of the 33 (6.1%) patients who died on the scene, three received resuscitation attempts. Conclusion: Although EMS providers encounter hospice and comfort care patients infrequently, awareness of hospice services and comprehensive end-of-life care communication skills with patients and family should be an important part of EMS.

Pharmacists find purpose in end-of-life care

Pharmacists find purpose in end-of-life care