California Hospice Ownership Changes From 2018-2020: A Spatial Analysis and Case Illustration.

Hospices in California have undergone significant and complicated ownership changes in recent years. Little is known about the impact of these ownership changes on hospices. The purpose of our longitudinal, retrospective descriptive study was to describe the ownership changes impacting hospices 2018 to 2021 in California. Using descriptive statistics, we measured characteristics of hospices with and without ownership changes employing public data from the California Home Health Agencies and Hospice Annual Utilization Report. Ownership change characteristics were measured via publicly available hospice provider and facility data. Spatial characteristics were additionally measured via latitude and longitude publicly available data. Our findings showed that ownership changes were significant and complicated. An influx of for-profit organizations into the California market was primarily responsible for these changes. Additionally, lack of corporate financial public disclosure and voluntary hospice accreditation, certification, and reporting result in a lack of free, publicly available, definitive comprehensive data on for-profit hospice ownership. This hinders information gathering on and provider/familial choice-making regarding hospices. Our study provides critical insight into the impact of ownership changes and lack of definitive, free, publicly available information on adult hospices in California caring for children and has important clinical, research, and policy implications.

Understanding Adult Hospices Caring for Children in California, 2018-2021.

In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices in California that provided care to children from 2018 to 2021. Using public data from the California Home Health Agencies and Hospice Annual Utilization Report, we conducted a longitudinal, retrospective descriptive study to examine the effects of hospice characteristics on adult hospices which provide care to children. Market, mission, operational, and financial characteristics were measured via the California utilization data using descriptive statistics. Service area was measured via latitude and longitude public data. Hospice location maps were generated for year 2018 and year 2021. The 148 hospices in the study had distinct organizational profiles, mainly small, with broad service coverage areas, in rural and urban communities with predominantly nurses visiting children. There was a significant decline (32%) in availability of adult hospices caring for children between 2018 and 2021, particularly in northern California. Hospice economics, lack of familiarity with Medicaid, and staff comfortability with caring for children in hospice, were not driving this decline. Our study provides critical insight into the characteristics of adult hospices in California providing care for children and has important policy implications.

State of the Service: Pediatric Palliative and Hospice Community-Based Service Coverage in the United States.

Background: The pediatric literature describes reliance on community-based organizations for home-based palliative and hospice care for children. Objective: To quantify and describe the inclusion of children in services, staffing, and care scope offered by community-based hospice organizations in the United States. Design and Subjects: This study utilized an online survey distributed to organizational members of the National Hospice and Palliative Care Organization (NHPCO) in the United States. Results: A total of 481 hospice organizations from 50 states, Washington DC, and Puerto Rico responded. Twenty percent do not provide services for children. Nonmetro geographies are less likely to provide services for children. Pediatric services provided include home-based pediatric hospice (57%), home-based palliative care (31%), inpatient pediatric hospice (23%), and inpatient pediatric palliative care (14%). Hospice annual pediatric census is an average of 16.5 children, while palliative care annual census is an average of 36. Less than half (48%) of responding agencies have a team that is dedicated to only pediatric care. Medicaid and the Children's Health Insurance Program are the most common forms of reimbursement, with 13% depicting "no reimbursement" for provision of care for children and many relying on philanthropy coverage. Lack of trained personnel, discomfort, and competing priorities were depicted as the most common barriers. Conclusions: Children remain underrepresented in the extension of care offered through community-based hospice organizations in the United States particularly in nonmetro settings. Further research into strong training, staffing, and reimbursement models is warranted.

Comparing Health Care Provider-Perceived Barriers to Pediatric Palliative Care Fifteen Years Ago and Today.

OBJECTIVE: This study examines health care provider perspectives about barriers to pediatric palliative care for seriously ill children 15 years after an initial study within the same academic health system. METHODS: Anonymous validated surveys were sent electronically to inpatient nursing unit distribution lists (n = 1315). Reminders were sent through e-mail twice over a two-month data collection period. RESULTS: Response rate was 20.9% (275/1315) with 45.2% of responses from critical care units and 21.6% from hematology/oncology units. Of the participants, 58.2% (n = 160) had ≥10 years nursing experience, 58.5% (n = 161) had one to five patients die in the past 12 months, and 50.2% (n = 138) had one to five patients receiving subspecialty pediatric palliative care in the past year. Approximately one-half of the participants reported 3 of 26 barriers listed on the study survey as frequently or almost always occurring, including (1) family preference for more life-sustaining treatment than staff (n = 177, 64.8%), (2) family not ready to acknowledge incurable condition (n = 175, 64.1%), and (3) parent discomfort with possibility of hastening death (n = 146, 53.7%). Study findings were similar between 2002 and 2017, particularly in the extremes of the most and least commonly cited barriers. CONCLUSIONS: Barriers to palliative care for hospitalized children persist and commonly include perceptions that families deny, prefer, or have discomfort with forgoing life-sustaining treatments. Increasingly, studies have shown that families can be simultaneously hopeful and aware of their child's worsening health. Further palliative care education and research about these barriers and their impacts are necessary to support seriously ill children and their families.

Issues related to providing quality pediatric palliative care in the community.

The medical practitioner in the community is in a unique position to assist children and their families from the time of diagnosis with a life-threatening condition through to the end of life. The purpose of this article is to inform medical practitioners who care for children with complex, chronic, and life-limiting conditions about pediatric palliative care in the community. It is intended as a guide to improve understanding about (1) the misconceptions and barriers surrounding the provision of care in the community for children with chronic, complex, and life-limiting conditions; (2) the availability of services for care in the community; (3) challenges concerning out-of hospital do-not-attempt-resuscitation orders for children; and (4) reimbursement issues that impact the provision of care.

National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care.

PURPOSE: To determine how palliative and end-of-life care can best be incorporated into the training of pediatric residents. METHODS: From 2001 to 2002, we surveyed 246 directors and 235 residents of pediatric residency programs. We elicited responses regarding (1) perceived relevance of pediatric palliative care, (2) residents' exposure to palliative medicine, (3) competency of faculty and matriculating residents in palliative care, (4) core palliative medicine competencies, and (5) the best teaching/learning format for palliative care. RESULTS: Fifty-five directors (22.4%) and 98 residents (42.0%) responded. More than three quarters of directors (78.1%) agreed with the statement that palliative care as a competency is "somewhat" to "very" important. Approximately one third (32.7%) agreed with the statement that their residents were not clinically exposed to end-of-life care; 99.0% of the residents indicated participation in such care. Almost one third of directors (27.3%) indicated that they had no faculty available to teach palliative care. Only 38.2% agreed with the statement that matriculating residents are competent in palliative medicine while many residents indicated having limited or no training in core palliative care competencies. DISCUSSION/CONCLUSIONS: For palliative care principles to be better incorporated into pediatric practice, they must be incorporated into residency education, optimally through informal teaching and during rounds. Finding ways to teach residents palliative medicine during clinical "teachable moments" and standardizing didactic curricula should become a priority in palliative and end-of-life care education.