Symptom Burden and Activity of Daily Living (ADL) Dependency Among Home Health care Patients Discharged to Home Hospice

Background: We sought to examine sociodemographic and clinical characteristics present on admission to HHC associated with discharge to hospice. Methods: We used a 5% random sample of 2017 national Outcome and Assessment Information Set (OASIS) data. A Cox proportional hazards regression model was estimated for the primary outcome (discharge to hospice) to examine the associations with sociodemographic and clinical characteristics of HHC patients. Results: Among 489, 230 HHC patients, 4268 were discharged to hospice. The median (interquartile range) length of HHC stay for patients discharged to hospice care was 33 (14-78) days. Compared to White patients, Black, Hispanic, and other race, (hazard ratio [HR] = .50 [95% confidence interval, CI = .44–.57]), (HR = .53 [95% CI = .46–.62]), and (HR = .49 [95% CI = .40–.61], respectively) was associated with shorter time to discharge to hospice care. Clinical characteristics including severe dependence in activities of daily (ADL) (HR = 1.68 [95% CI = 1.01–2.78]), cognitive impairment (HR = 1.10 [95% CI = 1.01–1.20]), disruptive behavior daily (HR = 1.11 [95% CI = 1.02–1.22]), and inability to feed oneself (HR = 4.78, 95% CI = 4.30, 5.31) was associated with shorter time to discharge to hospice. Symptoms of anxiety daily (HR = 1.55 [95% CI = 1.43–1.68]), and pain daily or all the time (HR = 1.54 [95% CI = 1.43–1.64]) were associated with shorter time to discharge to hospice. Conclusions: High symptom burden, ADL dependency, and cognitive impairment on admission to HHC services was associated with greater likelihood of discharge to hospice.

Are Young Adults Ready to Complete Advance Directives?

Introduction: The dual objective of this study is to examine the perspectives of young adults toward advance directives (ADs) and their preferences related to life-sustaining treatment and care options. Methods: Participants include graduate students (n = 30) attending a university in New York State. Data were collected using a structured survey questionnaire and Medical Orders for Life-Sustaining Treatment (MOLST) form. Bivariate summary statistics were performed to address the study aims. Results: The mean age of study participants was 24 years, 60% were female, 60% white, and 27% Black. Most (87%) participants reported being comfortable discussing death and end-of-life care and preferring to make their own decisions. Under the circumstance of no pulse and/or not breathing, 87% want CPR. With a pulse and respiration, 96% want artificially administered fluids and nutrition, 90% want a trial period of intubation and/or mechanical ventilation, 67% want to be sent to a hospital, 67% want antibiotics, and 53% want no limitations on medical intervention. Conclusion: Our findings extend upon previous research by quantifying young adults’ specific beliefs, experiences, and preferences regarding advance directives and life-sustaining interventions. Young adults in our study preferred maximum medical interventions for life-sustaining treatment and care. Given the troubling trends in unintended injury (eg, car crashes and drug overdose) as the leading cause of death among young adults, they should be given an opportunity to understand the options and treatments available and should be encouraged to complete an AD.

Establishing the Groundwork for Clinical Trials With Hiccupops® for Hiccup Palliation

Objective Because hiccup palliation remains an unmet clinical need, we report here on an early experience with Hiccupops, ® a patented product designed for the express purpose of providing a mechanism-based intervention for hiccup palliation. Methods Meter Health, the developer and manufacturer of this patented product, used a purposive sampling approach to allow individuals with hiccups and a desire for hiccup palliation to purchase their agent and then to report on its efficacy or lack thereof. The authors of this report were provided these outcome data and allowed to analyze, report, and publish with no input from Meter Health with the exception of comments on accuracy. Results This report focused on 43 surveys that were completed. In response to the question, “Did the Hiccupops work for the person they were purchased for?” 29 (67%) responded, “yes.” Seven individuals (16%) responded, “no;” and 7 (16%) were “not sure.” Write-in comments appeared to substantiate the effective palliative nature of the intervention: “A friend with 10 days of hiccups following… brain tumor surgery, after 2 days, they stopped!!!#.” Another noted the following: “I like that if my hiccups get painful they’re there as a quick relief.” Less favorable comments were also noted: “She couldn’t get past the…. taste.” Another read as follows: “They were not effective in stopping my father’s intractable hiccups…. I like that there is someone out there who cares about trying to stop people’s hiccups.” Conclusions This patented product appears to palliate hiccups in some individuals and merits further study.

Communicating With Nursing Home Residents About End of Life

Approximately 33% of the 1.2 million older individuals residing in nursing homes have the capacity to discuss their preferences for end-of-life care, and 35% will die within their first year in the nursing home. These conversations necessary to promote care consistent with the resident’s preferences are often limited and most often occur when the resident is actively dying. The purpose of this secondary analysis was to understand the resident’s perspectives on end-of-life communication in the nursing home and suggest approaches to facilitate this communication. We interviewed 46 participants (16 residents, 10 family members, and 20 staff) in a Southeast Florida nursing home from January to May 2019. The data were analyzed using descriptive and pattern coding and matrices to decipher preliminary categories and thematic interpretation within and across each participant group. Two themes emerged from this secondary analysis that residents assume others know their end-of-life preferences, and past experiences may predict future end-of-life choices. Residents and family members were willing to discuss end-of-life care. Study findings also suggested that past experiences with the end-of-life and critical illness of another could impact residents’ and family members’ end-of-life care decisions, and that nurses’ recognition of subtle signs of a resident’s decline may trigger provider-initiated end-of-life conversations. Future research should focus on strategies to promote earlier end-of-life discussions to support independent decision-making about end-of-life care in this relatively dependent population of older adults.

Factors that Influence End-Of-Life Decision Making Amongst Attending Physicians

Background: Medical advances prolong life and treat illness but many patients have chronically debilitating conditions that prevent them from making end-of-life (EOL) decisions for themselves. These situations are difficult to navigate for both patient and physician. This study investigates physicians’ feelings and approach toward EOL care, physician-assisted suicide (PAS), and euthanasia. Methods: An anonymous, self-administered online survey was distributed through the New Jersey Medical School servers and American College of Surgeons forums. The survey presented clinical EOL vignettes and subjective questions regarding PAS and euthanasia. Results: We obtained 142 responses from attending physicians. Respondents were typically male (61%), married (85%), identified as Christian (54%), had more than 20 years of experience (55%), and worked at a university hospital (57%). Religious beliefs and years of work experience seemed to be significant contributors in EOL decision making, whereas gender and medical specialty were not significantly influential. Conclusion: Factors such as years of work experience and religious belief may influence medical professionals’ opinions about PAS and euthanasia and their subsequent actions regarding EOL care. In many cases, the boundaries are blurred and require further study before concrete conclusions can be made.

Assessing Quality in Advance Care Planning Documentation: A Survey of Current Methods

Background High-quality advance care planning (ACP) documentation facilitates the communication of patients’ wishes as they progress in their disease course and travel between health care settings. No consensus exists regarding evaluation of documentation quality, and diverse strategies for assessing quality have been adopted in clinical ACP studies. Methodology We conducted a literature review in PubMed and via manual search to identify clinical studies that assessed ACP quality or completeness as an outcome measure over a 5-year period. Studies that treated ACP as a binary outcome variable (present or absent), studies that took place outside of the US, and studies in pediatric populations were excluded from review. Results We identified 11 studies for inclusion in our review. Across study methodologies, the following 8 quality domains were identified: discussion frequency, documentation accessibility, discussion timing, health care proxy, health goals or values, scope of treatment/code status, prognosis/illness understanding, and end of life (EOL) care planning. Each study assessed between 2 and 6 domains. Divergent methods for assessing quality domains were utilized, including manual qualitative analysis and natural language processing techniques. Conclusion Defining and measuring the quality of documentation is critical to developing ACP programs that improve patient care. Our review provides an adaptable framework centered around quality domains.

Truth Disclosure at the End of Life: A Qualitative Study of Internal Medicine Residents in the United Arab Emirates

Background Respect for patient autonomy has become the guiding biomedical ethical tenet in the West; yet, moral values are contextual and culturally relevant. In the collectivist society of the Middle East, families and physicians have historically believed that concealing truth about a terminal illness is more ethical and compassionate. Recent studies reveal a trend toward truth disclosure. Objective To gain insight into resident experiences with, and barriers to, truth disclosure in terminally ill patients in the United Arab Emirates (UAE). Methods Focus group interviews were conducted with first through fourth year internal medicine residents and recent graduates at two large academic medical centers in the UAE. Qualitative thematic content analysis was used to identify themes related to communication and truth telling in end-of-life care. Results Residents revealed that non-disclosure of medical information in serious illness is a common practice in UAE hospitals. Barriers to truth telling include family objection, deficits in medical training, and inconsistently implemented institutional guidelines. Conclusion Educational and policy interventions are needed to improve physician-patient communication, decrease patient-family-physician tension, and alleviate trainee moral distress.

Pediatric End-of-Life Care in Rural America: A Systematic Review

Background: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. Objective: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. Methods: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. Results: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. Conclusions: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.

A Systematized Approach to Advancing the Quality of Community-Based Palliative Care

Despite growing recognition of the importance of community-based palliative care, optimizing the use of services continues to be a challenge. Until recently, key barriers were reimbursement and limited access. As services have become increasingly available, engagement of patients and their caregivers has emerged as a major obstacle. The Palliative Activation SystemTM (PAS) is a comprehensive, quality improvement methodology designed to promote enhanced engagement of seriously ill adults and their caregivers in optimizing the use of community-based palliative care services and accelerate clinicians’ progress in meeting patients’ and caregivers’ care goals. This paper describes the design of the PAS. Experts in patient engagement and the development and evaluation of palliative care programs advised organizational leaders in the development of this methodology. The “Patient and Family Engagement” framework proposed by Carman and colleagues (2013) guided this work. The framework informed the selection of three core concepts—care alignment, illness trajectory, and social determinants of health—as foundational to the goals of the PAS. Additionally, this framework guided the selection of measures that will be used to assess progress in achieving enhanced engagement. This background work, coupled with findings from interviews with patients and caregivers who are current recipients of palliative care services, resulted in the implementation and ongoing testing of strategies targeting clinicians and organizational leaders and designed to enhance engagement. Lessons learned from the design phase of the PAS will advance the efforts of other organizations committed to increasing patient and caregiver engagement and enhancing attainment of their goals.