The multinomial mixed-effect regression model for predicting PCOC phases in hospice patients.

PURPOSE: The Palliative Care Outcomes Collaboration (PCOC) aims to enhance patient outcomes systematically. However, identifying crucial items and accurately determining PCOC phases remain challenging. This study aims to identify essential PCOC data items and construct a prediction model to accurately classify PCOC phases in terminal patients. METHODS: A retrospective cohort study assessed PCOC data items across four PCOC phases: stable, unstable, deteriorating, and terminal. From July 2020 to March 2023, terminal patients were enrolled. A multinomial mixed-effect regression model was used for the analysis of multivariate PCOC repeated measurement data. RESULTS: The dataset comprised 1933 terminally ill patients from 4 different hospice service settings. A total of 13,219 phases of care were analyzed. There were significant differences in the symptom assessment scale, palliative care problem severity score, Australia-modified Karnofsky performance status, and resource utilization groups-activities of daily living among the four PCOC phases of care. Clinical needs, including pain and other symptoms, declined from unstable to terminal phases, while psychological/spiritual and functional status for bed mobility, eating, and transfers increased. A robust prediction model achieved areas under the curves (AUCs) of 0.94, 0.94, 0.920, and 0.96 for stable, unstable, deteriorating, and terminal phases, respectively. CONCLUSIONS: Critical PCOC items distinguishing between PCOC phases were identified, enabling the development of an accurate prediction model. This model enhances hospice care quality by facilitating timely interventions and adjustments based on patients' PCOC phases.

Pain management in German hospices: a cross-sectional study.

BACKGROUND AND OBJECTIVES: Pain management is a necessary component of palliative care as most patients suffer from pain during the final phase of life. Due to the complex causation of pain in the last phase of life, it is important to utilize methods other than pharmacotherapeutic options in order to achieve adequate pain control. As little is known about treatment of pain in German hospices, a nationwide survey was conducted. MATERIALS AND METHODS: All German hospices (259) were contacted by post in June 2020 and asked to participate in an anonymous cross-sectional survey. RESULTS: A total of 148 (57%) German hospices took part in the survey. A broad variety of medication is used in the hospice setting. Metamizole is the most commonly used non-opiod analgesic , hydromorphone the most commonly used opioid, and pregabalin is the most commonly prescribed co-analgesic drug. The pain medication is usually prescribed as an oral slow-release substance. Standardized treatment schemes are rare among the responding hospices. Most of the respondents also use complementary treatment options, such as aroma (oil) therapy or music therapy, in the treatment of pain. Palliative sedation is used by nearly all responding hospices if all other treatment options fail. CONCLUSION: This survey provides an overview of the treatment options for pain management in German hospices. A broad variety of pain medication is used. Compared to international literature, it is debatable whether such a large variety of different types of pain medication is necessary, or whether a reduction in the type of medication available and the use of standardized treatment schemes could benefit everyone involved.

Building a programme theory of a specialist paediatric palliative and hospice care programme: development process and methodological reflection.

BACKGROUND: Paediatric palliative and hospice care aims to improve the quality of life of children with life-limiting and life-threatening conditions and their families. The number of these patients has risen significantly in recent years, resulting in an increased need for palliative care for this population. Although the need for paediatric palliative and hospice care is growing, meaningful outcome evaluation to demonstrate its effectiveness as a complex healthcare intervention is in its early stages. For complex interventions (programmes), theory-based evaluations have grown in prominence in recent years. They seek to understand how and why an intervention works by uncovering its underlying mechanisms by means of programme theory. To support both outcome evaluation in paediatric palliative care and a reflective practice of programme theorizing, we aimed to describe the construction of a programme theory for a specialist paediatric palliative and hospice care programme in Austria and to offer a reflective account of its development process. METHODS: We drew on a combination of theory-based evaluation frameworks to construct a programme theory consisting of an action and a change component. Through multiple iterations, incorporating different stakeholders' perspectives and drawing on different sources of knowledge and theory, we theorized how and why the programme likely achieves its intended outcomes. RESULTS: The programme theory outlines the proposed chains of events, causal mechanisms and outcomes of a specialist paediatric palliative and hospice care programme for children and families in several areas corresponding to its main conceptual tenets. Through a range of activities and interventions, the programme triggers coping and adaptation mechanisms that ultimately contribute to family and child wellbeing in physical, psychological, social, and spiritual dimensions. Established trust and partnership between children/families and healthcare professionals as well as a person-centered and family-centered approach were identified as enabling factors. CONCLUSIONS: Our findings provide insights into how a specialized paediatric palliative and hospice care programme works to achieve its intended outcomes for children and families. This helps demonstrate its impact, contributing to meaningful outcome evaluation and service improvement.

Dementia patients in palliative care according to data from the German National Hospice and Palliative Care Register (2009-2021).

BACKGROUND: People with dementia are less in focus of palliative care research than other patient groups even though the awareness of their palliative and end-of-life care needs is rising. Empirical data analyses on people with dementia in palliative care services are lacking. AIM: To explore the prevalence of dementia diagnoses as per the ICD criteria among users of various palliative care settings and to compare use of palliative services, care pathways, and outcomes in people with and without a dementia diagnosis. DESIGN: We conducted retrospective analysis of dementia diagnoses as per ICD (F00-F03/G30) in the German National Hospice and Palliative Care Register between 2009 and 2021. The analysis used methods of descriptive and inferential statistics, including the Bonferroni correction for alpha error inflation. SETTING/PARTICIPANTS: We limited the analysis to the subsample of people aged over 64. RESULTS: The prevalence of dementia in the different settings of palliative care was lower than in the age-comparable population: Of the 69,116 data sets included in the analysis, a small minority (3.3%) was coded with dementia as the principal diagnosis. Among patients on inpatient palliative care wards, 0.8% (148 of 19,161) had a dementia diagnosis, as did 2.2% (52 of 2,380) of those under hospital palliative care support teams and 4.3% (2,014 of 46,803) of those receiving specialized palliative care at home. CONCLUSIONS: The records of the German National Hospice and Palliative Care Register suggest that the prevalence of dementia is lower than one might expect from general population data, though numbers are in line with international studies on proportion of dementia patients receiving palliative care. Future research could usefully examine whether this discrepancy stems either from omissions in coding dementia as patients' principal diagnosis respectively from lapses in documentation of a dementia diagnosis previously made, or from barriers to accessing palliative care services or even displays being excluded from palliative care when trying to access it. TRIAL REGISTRATION: No registration.

Development, validation and reliability testing of the hospice care environment scale.

BACKGROUND: WHO stated the environment is an important factor affecting the development of hospice care. The environment is the sum of factors affecting behavior besides the individual factors. Currently, a scale to comprehensively assess the hospice environment of nurse is still lacking. This study aimed to develop an instrument to investigate the environmental factors affecting hospice care of nurses. METHODS: Literature review and a semi-structured interview were conducted to form the items pool of the Hospice Care Environment Scale. Two rounds of Delphi expert consultation were conducted by 16 experts to revise the scale dimensions and entries to form the Hospice Care Environment Scale. A psychometric evaluation was then performed among 530 oncology nurses in a large tertiary oncology hospital in Hubei Province. The 500 valid questionnaires were randomly divided into two groups in a 1:1 ratio, sample 1 (n1 = 250) for item screening and sample 2 (n2 = 250) for quality evaluation of the resulting scale. Item analysis, reliability analysis, validity analysis and acceptability analysis were performed. RESULT: The Hospice Care Environment Scale consists of two dimensions and 13 entries. The Cronbach's α coefficient of the Hospice Care Environment Scale was 0.970, and the Cronbach's α coefficient of the two dimensions were 0.952 and 0.969, respectively, with the Item-content validity index and average Scale- content validity index of the scale was both 1.000. The validation factor analysis showed the standardized path coefficients of each item were basically above 0.5, and the factor structure model was stable and suitable. The average completion time of the scale was about 3 min, which had good feasibility. CONCLUSION: The Hospice Care Environment Scale to assess the environment of hospice care services, has good content and construct validity and reliability. This scale can provide guidance to evaluate the hospice care environment.

Differences in end-of-life care patterns between types of hospice used for cancer patients: a retrospective cohort study.

BACKGROUND: In response to the rapid aging population and increasing number of cancer patients, discussions on dignified end-of-life (EoL) decisions are active around the world. Therefore, this study aimed to identify the differences in EoL care patterns between types of hospice used for cancer patients. METHODS: In this population-based cohort study, the Korean National Health Insurance Service cohort data containing all registered cancer patients who died between 2017 and 2021 were used. A total of 408,964 individuals were eligible for analysis. The variable of interest, the type of hospice used in the 6 months before death, was classified as follows: (1) Non-hospice users; (2) Hospital-based hospice single users; (3) Home-based hospice single users; (4) Combined hospice users. The outcomes were set as patterns of care, including intense care and supportive care. To identify differences in care patterns between hospice types, a generalized linear model with zero-inflated negative binomial distribution was applied. RESULTS: Hospice enrollment was associated with less intense care and more supportive care near death. Notably, those who used combined hospice care had the lowest probability and frequency of receiving intense care (aOR: 0.18, 95% CI: 0.17-0.19, aRR: 0.47, 95% CI: 0.44-0.49), while home-based hospice single users had the highest probability and frequency of receiving supportive care (Prescription for narcotic analgesics, aOR: 2.95, 95% CI: 2.69-3.23, aRR: 1.45, 95% CI: 1.41-1.49; Mental health care, aOR: 3.40, 95% CI: 3.13-3.69, aRR: 1.35, 95% CI: 1.31-1.39). CONCLUSION: Our findings suggest that although intense care for life-sustaining decreases with hospice enrollment, QoL at the EoL actually improves with appropriate supportive care. This study is meaningful in that it not only offers valuable insight into hospice care for terminally ill patients, but also provides policy implications for the introduction of patient-centered community-based hospice services.

End-of-life conversations about death and dying from volunteer perspectives: A qualitative study.

OBJECTIVES: Although often unrecognized, volunteers fulfill many essential roles in hospices and other end-of-life care settings. Volunteers complement the actions of professionals in fulfilling many extra care needs, such as delivering newspapers and tidying bedsides. We explored end-of-life conversations about death and dying between hospice volunteers and terminally ill people, with a particular emphasis on any expressed desire to die. Our 2 research questions were as follows: (1) What is the nature of end-of-life conversations between hospice patients and hospice volunteers? and (2) How do hospice volunteers experience conversations about death and dying with patients who are at the end-of-life? METHODS: We conducted semi-structured interviews using an interpretive phenomenological analysis. We recruited hospice volunteers from 4 hospices in Calgary, Edmonton, and Red Deer; 3 larger cities in the province of Alberta, Canada. RESULTS: We interviewed 12 participants to saturation. Four themes emerged: (1) trusting conversations about death and dying in the context of a safe place; (2) normalcy of conversations about death and dying; (3) building meaningful relationships; and (4) end-of-life conversations as a transformative experience. Our results emphasize the importance of preparing volunteers for conversations about death and dying, including the desire to die. SIGNIFICANCE OF RESULTS: The safe environment of the hospice, the commitment to patient confidentiality, and the ability of volunteers to meet the basic and emotional needs of dying people or simply just be present without having formal care duties that need to be completed contribute to volunteers being able to participate in timely and needed conversations about death and dying, including the desire to die. In turn, hospice experiences and end-of-life conversations provide a transformative experience for volunteers.

Hematologic Malignancy: Who Cares in the End? A Retrospective Cohort Study of Markers of Quality End-of-Life Care.

BACKGROUND: Early palliative care is increasingly used in solid organ malignancy but is less established in patients with hematologic malignancy. Disease-related factors increase the demand for hospitalization, treatment, and supportive care in patients with hematologic malignancy. The terminal phase of illness in patients with hematologic malignancy can be difficult to predict, resulting in complexities in establishing a standard for quality end-of-life care. METHODS: This is a retrospective single-center cohort study of adult patients with hematologic malignancy who died between October 2019 and July 2022. Patients were identified, and disease characteristics, therapy, and outcomes were extracted from medical records. Descriptive statistics are reported and univariate analyses were performed across a range of factors to assess for associations. RESULTS: A total of 229 patients were identified, with a median age of 77 years and 35% female. In the final 30 days of life, 65% presented to the emergency department, 22% had an ICU admission, 22% had an invasive procedure, 48% received cytotoxic therapy, 61% received a RBC transfusion, and 46% received a platelet transfusion. Use of intensive chemotherapy was particularly associated with hospitalization and ICU admission. A total of 74% referred to palliative care, with a median time from referral to death of 13 days. Of these patients, one-third were referred within the last 5 days of life. In terms of place of death, 54% died in the acute hospital setting and 30% in hospice, with a median hospice length of stay of 4 days. CONCLUSIONS: These findings highlight the need for further research into quality indicators for end of life in hematologic malignancy and earlier integration of specialist supportive and palliative care in both inpatient and outpatient settings.

[Palliative and Hospice Care in Nursing Homes: Discrepancies Between Theoretical Framework and Everyday Practice]. / Palliativversorgung und hospizliche Begleitung in der stationären Pflege zwischen theoretischem Konzept und Praxisalltag.

OBJECTIVES: Despite the existence of a legislative framework, palliative care and hospice support in nursing homes vary widely. Although most nursing homes have palliative care concepts by now, they are rarely integrated into everyday practice. This study aims to examine differences in palliative and hospice care and to determine the causes of discrepancies between theoretical framework and everyday practice. METHODS: Based on a pilot project, in depth structural and process analyses of two nursing homes in urban and rural areas in North Rhine-Westphalia were conducted. In addition, three nursing homes of an extended group of providers as well as an expert advisory board was included to minimize (provider-) specific characteristics and to expand findings. RESULTS: Although the proportion of palliative residents and their average age was comparable, analyses revealed significant differences between the nursing homes regarding the palliative length of stay (213.2 days vs. 88.6 days) as well as the mortality rate of palliative residents among all death cases (26% vs. 63.6%). Furthermore, internal processes within the nursing homes differed vastly despite similar concepts and procedural instructions. As a result, palliative care formally started at an earlier stage in nursing home X. Besides that, the identification of palliative care situations, as well as communication, organizational processes and the inclusion of cooperation partners, took place without fixed structures and was based on the subjective handling of staff members in both facilities. CONCLUSIONS: It turns out to be challenging for nursing homes to implement theoretical framework into everyday practice. To facilitate this process, aside from practicable assessments, defined responsibilities and organizational support, financing concepts at health policy level need to be established.

End-of-Life Doulas: Documenting Their Backgrounds and Services.

This is an exploratory study to document the demographic characteristics, backgrounds, and services provided by trained and certified INELDA end-of-life doulas. Like birth doulas, end-of-life doulas represent a divergent, yet complementary form of care for dying persons. The purpose of end-of-life care is to facilitate comfort of the dying person and their closest family members. Surveys were completed by 618 end-of-life doulas regarding their demographic characteristics, employment backgrounds, services, and their experiences providing end of life care to dying persons and their closest family members. Follow-up qualitative interviews were also conducted with a subset of 39 respondents who completed the original survey. Results show that trained doulas are largely white (91.4%), female (90.4%), hold a Bachelor's (32.3%) or Masters (32.4%) degree, and are employed outside of their EOLD work (70.1%). Qualitative data details services provided to dying persons and family members in addition to the benefits and challenges of working with traditional healthcare settings.

Family caregivers' experiences of end-of-life care in the acute hospital setting. A qualitative study.

BACKGROUND: Acute hospital settings are generally not considered adequate places for end-of-life care, but terminally ill patients will continue to die in acute medical wards in the unforeseeable future. AIM: The aim of this study was to investigate family caregivers' experiences of end-of-life care in an acute community hospital in Iceland. METHODS: Fifteen in-depth qualitative semi-structured interviews were conducted with participants who had been primary caregivers. The transcribed interviews were analysed using thematic content analysis. FINDINGS: Findings indicated that the acute hospital setting is not a suitable environment for end-of-life care. Effective communication and management of symptoms characterised by warmth and security give a sense of resilience. Three main themes emerged: (1) Environmental influences on quality of care; (2) Communication in end-of-life care; (3) The dying process. Each of the themes encompassed a variety of subthemes. CONCLUSIONS: Findings suggest that effective communication is the cornerstone of quality of care in the acute hospital environment and essential for establishing a sense of security. The severity of symptoms can deeply affect family caregivers' well-being. Acknowledging and appreciating the meaning of respect and dignity at the end-of-life from family caregivers' perspective is vital.

Quality measures for end-of-life care for children with cancer: A modified Delphi approach.

BACKGROUND: The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for pediatric oncology. METHODS: The authors used the modified Delphi method to assess potential quality measures. Panelists were selected on the basis of professional organization nominations and expert qualifications. Pediatric and adult oncology, pediatric palliative care, social work, nursing, and hospice were represented. The authors provided the panel with a literature review on 20 proposed measures derived from adult measures and bereaved family interviews. The panel first scored the importance of each measure on a 9-point scale and then discussed the measures via a conference call. The panel then rescored the measures. According to a priori standards, measures with median scores ≥ 7 with at least 7 of 9 experts ranking it as ≥4 were endorsed. RESULTS: The 16 endorsed measures included measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), death location (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at EOL and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment). Unendorsed measures included avoidance of chemotherapy at EOL and home death. CONCLUSIONS: Expert panel-endorsed quality measures have been developed for EOL care in pediatric oncology. The measures need validation with bereaved families and further refinement before they are ready for real-world application as a tool for standardizing EOL care in pediatric oncology. LAY SUMMARY: Quality measures for end-of-life care for children with cancer lag behind adult quality measures. Therefore, the authors have conducted an expert panel to develop an endorsed list of quality measures for end-of-life care for children with cancer. The 16 endorsed measures include measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), location of death (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at the end of life and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment).

Aggressiveness of end-of-life cancer care: what happens in clinical practice?

PURPOSE: End-of-life cancer care varies widely, and very few centers evaluate it systematically. Our objective was to assess indicators of the aggressiveness of end-of-life cancer care in clinical practice. METHODS: An observational, longitudinal, and retrospective cohort study was conducted at a tertiary hospital. Eligible patients were at least 18 years old, had a solid tumor, were followed up by the Oncology Department, and had died because of cancer or associated complications during 2017. We used the criteria of Earle et al. (J Clin Oncol 21(6):1133-1138, 2003) to assess the aggressiveness of care. Multivariate logistic regression analyses were performed to characterize factors associated with aggressiveness of therapy. RESULTS: The study population comprised 684 patients. Eighty-eight patients (12.9%) received anti-cancer treatment during the last 14 days of their lives, and 62 patients (9.1%) started a new treatment line in the last 30 days. During the last month of life, 102 patients (14.9%) visited the ER, 80 patients (11.7%) were hospitalized more than once, and 26 (3.8%) were admitted to the ICU. A total of 326 patients (47.7%) died in the acute care unit. A total of 417 patients (61.0%) were followed by the Palliative Care Unit, and in 54 cases (13.0%), this care started during the last 3 days of life. CONCLUSIONS: The use of anti-cancer therapies and health care services in our clinical practice, except for the ICU, did not meet the Earle criteria for high-quality care. Concerning hospice care, more than half of the patients received hospice services before death, although in some cases, this care started close to the time of death.

When they stop drinking-examining end-of-life hydration practices and death rattle occurrence.

PURPOSE: To characterize the practice of subcutaneous hydration provision in the Beer-Sheva home care hospice unit. We also explore the potential connection between the provision of subcutaneous hydration and the incidence of death rattle. METHODS: This was a prospective observational study involving 120 hospice patients. During the 6 days before death, hospice staff recorded whether or not fluids were administered orally and/or subcutaneously; the duration, timing, and quantity of fluid administration; the incidence, timing, and duration of death rattle; and whether medications that can affect death rattle were given. RESULT: Fifty-three percent of the patients received subcutaneous hydration. The mean daily volume administered in the hydration group was 434 ml. There was a significant association between the duration of treatment in the hospice unit and provision of subcutaneous hydration (mean of 51 days in hydration group vs. 31 days in non-hydration group, p = 0.03). Although not statistically significant, males were more likely to receive subcutaneous hydration than females (62% of males vs. 46% of females, p = 0.09). There was a higher incidence of death rattle in men compared to women (54.7% in men vs. 32.8% in women, p = 0.025). A statistically significant association between death rattle and the provision of subcutaneous hydration wasn't demonstrated. CONCLUSION: The decision of whether to provide subcutaneous hydration is individualized taking into consideration the values of the patients and their families. The provision of 500 ml per day of subcutaneous saline during the last 6 days of life does not significantly increase the incidence of death rattle.

How, when, and why individuals with stage IV cancer seen in an outpatient setting are referred to palliative care: a mixed methods study.

PURPOSE: Early palliative care (PC) for individuals with advanced cancer improves patient and family outcomes and experience. However, it is unknown when, why, and how in an outpatient setting individuals with stage IV cancer are referred to PC. METHODS: At a large multi-specialty group in the USA with outpatient PC implemented beginning in 2011, clinical records were used to identify adults diagnosed with stage IV cancer after January 1, 2012 and deceased by December 31, 2017 and their PC referrals and hospice use. In-depth interviews were also conducted with 25 members of medical oncology, gynecological oncology, and PC teams and thematically analyzed. RESULTS: A total of 705 individuals were diagnosed and died between 2012 and 2017: of these, 332 (47%) were referred to PC, with 48.5% referred early (within 60 days of diagnosis). Among referred patients, 79% received hospice care, versus 55% among patients not referred. Oncologists varied dramatically in their rates of referral to PC. Interviews revealed four referral pathways: early referrals, referrals without active anti-cancer treatment, problem-based referrals, and late referrals (when stopping treatment). Participants described PC's benefits as enhancing pain/symptom management, advance care planning, transitions to hospice, end-of-life experiences, a larger team, and more flexible patient care. Challenges reported included variation in oncologist practices, patient fears and misconceptions, and access to PC teams. CONCLUSION: We found high rates of use and appreciation of PC. However, interviews revealed that exclusively focusing on rates of referrals may obscure how referrals vary in timing, reason for referral, and usefulness to patients, families, and clinical teams.

End-of-life care among adolescent and young adult patients with cancer living in poverty.

BACKGROUND: To the authors' knowledge, end-of-life (EOL) care outcomes among adolescents and young adults (AYAs) with cancer who are living in poverty remain poorly understood. The primary aim of the current study was to examine the effect of poverty on EOL care for AYA patients with cancer. METHODS: The authors conducted a multisite, retrospective study of AYA patients with cancer aged 15 to 39 years who died between January 2013 and December 2016 at 3 academic sites. Medical record-based EOL care outcomes included hospice referral, palliative care (PC) consultation, cancer treatment within the last month of life, and location of death. Two measures of poverty were applied: 1) zip code with a median income ≤200% of the federal poverty level; and 2) public insurance or lack of insurance. Logistic regression analyses were conducted. RESULTS: A total of 252 AYA cancer decedents were identified. Approximately 41% lived in a high-poverty zip code and 48% had public insurance or lacked insurance; approximately 70% had at least 1 poverty indicator. Nearly 40% had a hospice referral, 60% had a PC consultation (76% on an inpatient basis), 38% received EOL cancer treatment, and 39% died in the hospital. In bivariable analyses, AYA patients living in low-income zip codes were found to be less likely to enroll in hospice (P ≤ .01), have an early PC referral (P ≤ .01), or receive EOL cancer treatment (P = .03), although only EOL cancer treatment met statistical significance in multivariable models. No differences with regard to location of death (P = .99) were observed. CONCLUSIONS: AYA patients with cancer experience low rates of hospice referral and high rates of in-hospital death regardless of socioeconomic status. Future studies should evaluate early inpatient PC referrals as a possible method for improving EOL care.

Patterns of Hospice and Home-Based Palliative Care in Children: An Ohio Pediatric Palliative Care and End-of Life Network Study.

OBJECTIVE: To describe the demographic and clinical characteristics of a cohort of patients referred to pediatric hospice and home-based palliative care (HBPC) programs across Ohio in 2016. STUDY DESIGN: Retrospective cohort study of patients referred to hospice/HBPC from 3 pediatric palliative care programs in Ohio in 2016. Demographic and clinical data were extracted from the medical record and analyzed with descriptive statistics. RESULTS: There were 209 patients referred: 49 (24%) to hospice and 160 (77%) to HBPC. The most common diagnoses were genetic/chromosomal syndromes (23%), neurologic or neurodegenerative conditions (23%), and cancer (21%). Durable medical equipment use was frequent (85%), with gastrostomy or jejunostomy tubes (22%) the most common. Most patients (64%) retained full-code resuscitation status. Fifty-seven patients (27%) died before July 1, 2018: 37 in hospice (18% of the overall cohort, 65% of decedents) and 20 in HBPC (10% of the overall cohort, 35% of decedents). Sixty-seven percent of hospice and 40% of HBPC patients died at home. CONCLUSIONS: Pediatric hospice and HBPC programs serve a diverse cohort of patients. Patients referred to pediatric HBPC programs commonly die and are likely to die at home despite not being enrolled in hospice care. The high proportion of decedent HBPC patients indicates that the notion of hospice vs palliative care may present a false dichotomy in many children with life-limiting conditions. Reimbursement models for HBPC should reflect the clinical similarity to hospice in the care of children with life-limiting illnesses.

Hospice enrollment among cancer patients in Texas covered by Medicare managed care and traditional fee-for-service plans: a statewide population-based study.

PURPOSE: Although rates of hospice use have increased over time, insurance plan- and racial/ethnic-based disparities in rates have been reported in the USA. We hypothesized that increased rates of hospice use would reduce or eliminate insurance plan-based disparities and that racial/ethnic disparities would be eliminated in managed care (MC) insurance plans. METHODS: We studied the use of hospice care in the final 30 days of life among 40,184 elderly Texas Medicare beneficiaries who died from primary breast, colorectal, lung, pancreas, or prostate cancer between January 1, 2007 and December 31, 2013, using statewide Medicare claims linked to cancer registry data. Rates of hospice use were computed by race/ethnicity and insurance plan (MC or fee-for-service (FFS)). We used logistic regression to account for the impact of confounding factors. RESULTS: Rates of hospice use increased significantly over time, from 68.9% in 2007 to 76.1% in 2013. By 2013, differences in hospice use rates between MC and FFS plans had been reduced from 10% to < 5%. However, after accounting for insurance plan and confounding factors, racial/ethnic minority beneficiaries' hospice use was significantly lower than non-Hispanic white beneficiaries' (p < 0.0001). This disparity was observed among both FFS and MC beneficiaries. CONCLUSIONS: Hospice use in the final 30 days of life has increased among elderly cancer patients in Texas, virtually eliminating the difference between FFS and MC insurance plans. Despite these positive trends, racial/ethnic-based disparities persist. These disparities are not explained by confounding factors. Future research should address social and behavioral influences on end-of-life decisions.

Healthcare professionals' perceptions and experiences of using a cold cot following the loss of a baby: a qualitative study in maternity and neonatal units in the UK.

BACKGROUND: Best practice in perinatal bereavement care suggests offering parents the opportunity to spend time with their baby. Cold cots facilitate this purpose by reducing the deterioration of the body and evidence indicates their wide availability in maternity and neonatal units in the UK. This study aimed to examine healthcare professionals' perceptions and experiences of using a cold cot following the loss of a baby. METHODS: A qualitative cross-sectional study was designed. In-depth, semi-structured interviews were conducted with 33 maternity and neonatal unit healthcare professionals who worked across three UK hospital settings. Data were analysed using inductive reflexive thematic analysis. RESULTS: Findings revealed that staff had predominantly positive views about, and experiences of, using a cold cot. The technology was highly valued because it facilitated parents to spend time with their baby and participants reported that it was generally easy to use and smoothly embedded into the clinical environment. Cold cots were deemed useful when mothers were medically unwell and needed time to recover, when parents struggled to say goodbye to their baby, wished to take the baby home, or wanted their baby to stay in the unit instead of going straight to the mortuary. The use of technology was further perceived to be relevant in scenarios of unexpected loss, post-mortem examination and with babies of late gestations or neonates. Despite staff expressing comfort with the delay of visual and olfactory body changes, the coldness of the baby's body that was accelerated with the use of a cold cot was a major concern as it connoted and possibly exacerbated the reality of death. CONCLUSIONS: Cold cots allow the materialisation of modern bereavement care practices that recognise the importance of continuing bonds with the deceased that is made possible through the creation of memories within an extremely restricted timeframe. Simultaneously, the body coldness concentrates the ambivalence toward an inherently paradoxical death, that of a baby. Training in perinatal bereavement care, including the use of cold cots, would help staff support bereaved parents whilst acknowledging dilemmas and managing contradictions encompassed in death at the time or near the time of birth.

Use of symptom-focused oncological cancer therapies in hospices: a retrospective analysis.

BACKGROUND: There is controversy regarding the practical implementation of symptom-focused oncological cancer therapies to hospice residents. In this study, we aim to analyse the use and indication of supportive-oncological cancer therapies in hospices. METHODS: We conducted a retrospective survey of all residents of two hospice centres in the government district of Lower Bavaria, Germany. Hospice 1 (H1) was a member of an oncological-palliative medical network, and hospice 2 (H2) was independently organized. The evaluation period was the first 40 months after the opening of the respective hospice care centre. Demographical and epidemiological data as well as indications and type of supportive-oncological cancer therapies were recorded. A descriptive analysis and statistical tests were performed. RESULTS: Of the 706 residents, 645 had an underlying malignant disease. The average age was 72 years and the mean residence time was 28 days. The most frequent cancer types were gastrointestinal cancers, gynaecological cancers and bronchial carcinomas. Overall 39 residents (33 in H1 and 6 in H2, p < 0.01) received symptom-focused oncological cancer therapy. The average age of these residents was 68 years, and the mean residence time was 55 days. The most common therapeutic indications were dyspnoea and pain. The most common symptom-focused oncological cancer therapies were bisphosphonates, transfusions (erythrocyte- and platelet- concentrates), radiotherapy and anti-proliferative drugs (chemotherapy, anti-hormonal- and targeted- therapies). Patients with therapy lived significantly longer than patients without therapy (p < 0.01). CONCLUSIONS: Symptom-focused oncological cancer therapies can be implemented in hospices; however, their implementation seems to require certain structural and organizational prerequisites as well as careful patient selection. As a palliative medical approach, the focus is to ameliorate the symptoms and not prolong life. Symptom-focused oncology treatment could be a further and important part for the therapy of hospice patients in the future.