Engagement, Advance Care Planning, and Hospice Use in a Telephonic Nurse-Led Palliative Care Program for Persons Living with Advanced Cancer.

Persons living with advanced cancer have intensive symptoms and psychosocial needs that often result in visits to the Emergency Department (ED). We report on program engagement, advance care planning (ACP), and hospice use for a 6-month longitudinal nurse-led, telephonic palliative care intervention for patients with advanced cancer as part of a larger randomized trial. Patients 50 years and older with metastatic solid tumors were recruited from 18 EDs and randomized to receive nursing calls focused on ACP, symptom management, and care coordination or specialty outpatient palliative care (ClinicialTrials.gov: NCT03325985). One hundred and five (50%) graduated from the 6-month program, 54 (26%) died or enrolled in hospice, 40 (19%) were lost to follow-up, and 19 (9%) withdrew prior to program completion. In a Cox proportional hazard regression, withdrawn subjects were more likely to be white and have a low symptom burden compared to those who did not withdraw. Two hundred eighteen persons living with advanced cancer were enrolled in the nursing arm, and 182 of those (83%) completed some ACP. Of the subjects who died, 43/54 (80%) enrolled in hospice. Our program demonstrated high rates of engagement, ACP, and hospice enrollment. Enrolling subjects with a high symptom burden may result in even greater program engagement.

Potential sources of moral distress during COVID-19: Perspectives of hospice interdisciplinary teams.

OBJECTIVE: This study aimed to examine the impact of COVID-19 on hospice Interdisciplinary team (IDT) members' self-reported stress and identify possible sources of moral distress. METHODS: A cross-sectional survey was conducted using Qualtrics to understand the impact of COVID-19 on quality improvement initiative implementation and hospice IDT members' general and dementia-specific care provision. Directed qualitative content analysis was used to analyze hospice IDT members' responses from five open-ended survey questions that were indicative of stress and possible moral distress. RESULTS: The final sample consisted of 101 unique respondents and 175 comments analyzed. Three categories related to sources of moral distress based on hospice IDT member survey responses were identified: (1) impact of telehealth, personal protective equipment (PPE), and visit restrictions on relationships; (2) lack of COVID-19-specific skills; and (3) organizational climate. Sources of moral distress were categorized in 40% of all responses analyzed. SIGNIFICANCE OF RESULTS: This study is one of the first to document and confirm evidence of potential stress and moral distress amongst hospice IDT members during COVID-19. It is imperative given the possible negative impact on patient care and clinician well-being, that future research and interventions incorporate mechanisms to support clinicians' emotional and ethical attunement and support organizations to actively engage in practices that address clinician moral distress resulting from restrictive environments, such as the one necessitated by COVID-19.

A Pilot Observational Exploratory Study of Well-Being in Hospice Interdisciplinary Team Members.

INTRODUCTION: Well-being and turnover intent represent key aspects to the promotion of a healthy workforce. Alarming levels of burnout and low levels of well-being have been documented in health professionals across care settings. Not only do high levels of burnout, low well-being and high turnover affect health professionals, but they are associated with poor patient care. However, limited research has investigated this topic specifically in hospice interdisciplinary team (IDT) members, nurses, chaplains, social workers. Thus, the purpose of this study was to explore hospice IDT members' well-being, and turnover intent. METHODS: This observational, pilot study used quantitative surveys to examine the well-being, and turnover intention at baseline and at 3 months. Twenty-five hospice IDT members at one site participated. RESULTS: Paired t-tests and percent change demonstrated significant decreases in compassion satisfaction (44.5 vs. 42.1, p = 0.04) and secondary traumatic stress score (18.5 vs. 13.3, p = 0.0001) and a significant increase in burnout score (17.6 vs. 20.5, p = 0.03) from baseline to follow up. Employee turnover slightly decreased from baseline to follow-up. CONCLUSIONS: In this pilot study, hospice IDT members had low levels of well-being at baseline that worsened over 3-months indicating a higher potential risk for burnout. Moreover, given the COVID-19 pandemic, this may be an ominous sign of what lies ahead for hospice providers regarding turnover, leading to significant long-term staffing problems in the field. If these results hold true in a larger sample, it could necessitate developing and testing further strategies to ensure a healthy and stable workforce.

"I felt useless": a qualitative examination of COVID-19's impact on home-based primary care providers in New York.

Research on professional burnout during the pandemic has focused on hospital-based health care workers. This study examined the psychological impact of the pandemic on home-based primary care (HBPC) providers. We interviewed 13 participants from six HBPC practices in New York City including medical/clinical directors, program managers, nurse practitioners, and social workers and analyzed the transcripts using inductive qualitative analysis approach. HBPC providers experienced emotional exhaustion and a sense of reduced personal accomplishment. They reported experiencing grief of losing many patients at once and pressure to adapt to changing circumstances quickly. They also reported feeling guilty for failing to protect their patients and reduced confidence in their professional expertise. Strategies to combat burnout included shorter on-call schedules, regular condolence meetings to acknowledge patient deaths, and peer support calls. Our study identifies potential resources to improve the well-being and reduce the risk of burnout among HBPC providers.

"There Is Something Very Personal About Seeing Someone's Face": Provider Perceptions of Video Visits in Home-Based Primary Care During COVID-19.

The rapid deployment of video visits during COVID-19 may have posed unique challenges for home-based primary care (HBPC) practices due to their hands-on model of care and older adult population. This qualitative study examined provider perceptions of video visits during the first wave of the COVID-19 crisis in New York City (NYC) through interviews with HBPC clinical/medical directors, program managers, nurse practitioners/nurse managers, and social work managers (n = 13) at six NYC-area practices. Providers reported a combination of commercial (health system-supported) and consumer (e.g., FaceTime) technological platforms was essential. Video visit benefits included triaging patient needs, collecting patient information, and increasing scheduling capacity. Barriers included cognitive and sensory abilities, technology access, reliance on caregivers and aides, addressing sensitive topics, and incomplete exams. Effectively integrating video visits requires considering how technology can be proactively integrated into practice. A policy that promotes platform flexibility will be crucial in fostering video integration.

Disruptions in Care and Support for Homebound Adults in Home-Based Primary Care in New York City During the COVID-19 Pandemic.

Homebound older adults are a highly vulnerable population, yet little is known about their experiences with healthcare during the COVID-19 pandemic. We interviewed patients in home-based primary care (HBPC) in New York City by telephone in May and June of 2020. Interviews covered social supports, household activities, self-care, and medical care, and asked participants to compare current with prepandemic experiences. Among 70 participants, 37% were Black and 32% were Hispanic. Disruptions in the home included greater difficulty accessing paid caregivers (13.9%) and food (35.3%) than before the pandemic, and unaddressed household chores (laundry, 81.4%; food preparation, 11.4%). Black study participants were more likely than White and Hispanic participants to report disruptions in accessing medical care (13 [50.0%] vs. 3 [14.3%] vs. 6 [27.3%], respectively, p = 0.02), as well as food preparation and medication taking. Black patients in HBPC are at risk of disparities in healthcare and social support during the COVID-19 pandemic.

Transitioning to Remote Recruitment and Intervention: A Tale of Two Palliative Care Research Studies Enrolling Underserved Populations During COVID-19.

CONTEXT: During the COVID-19 pandemic, community-based research studies experienced prolonged shutdowns unless able to pivot to remote study procedures. OBJECTIVES: To describe the revision of two National Institutes of Health funded community-based palliative-focused clinical trials serving underserved populations to accommodate remote subject enrollment and examine its impact. METHODS: Transitioning to remote processes required multiple protocol and procedural changes including: altering informed consent processes; reducing the number of surveys administered; adding internet access as an inclusion criterion. To understand technological challenges, a screening tool was developed for one study to identify potentially eligible subjects' technology abilities and accessibility. RESULTS: Subjects' limited access to the internet and internet-enabled devices and discomfort with technology led to changes in recruitment patterns. Lack of familiarity with technology increased the amount of time it took research team members and subjects to connect remotely. Patients with significant cognitive and/or sensory deficits were at higher risk of experiencing fatigue during remote study visits leading to streamlining of data collection. A researcher-developed technology screening tool found that potential subjects were not comfortable with videoconferencing through Zoom expressing a preference for phone visits. Reduced travel time made scheduling remote study visits more efficient. CONCLUSION: Future community- and home-based palliative care trials must consider the best way to utilize remote recruitment, enrollment, and data collection processes to increase efficiency and reduce costs. Researchers should consider technology accessibility and train staff to ensure the greatest possible opportunity to recruit underserved populations who have traditionally been underrepresented in research studies.

COVID Challenges and Adaptations Among Home-Based Primary Care Practices: Lessons for an Ongoing Pandemic from a National Survey.

OBJECTIVES: Approximately 7.5 million US adults are homebound or have difficulty accessing office-based primary care. Home-based primary care (HBPC) provides such patients access to longitudinal medical care at home. The purpose of this study was to describe the challenges and adaptations by HBPC practices made during the first surge of the COVID-19 pandemic. DESIGN: Mixed-methods national survey. SETTING AND PARTICIPANTS: HBPC practices identified as members of the American Academy of Homecare Medicine (AAHCM) or participants of Home-Centered Care Institute (HCCI) training programs. METHODS: Online survey regarding practice responses to COVID-19 surges, COVID-19 testing, the use of telemedicine, practice challenges due to COVID-19, and adaptations to address these challenges. Descriptive statistics and t tests described frequency distributions of nominal and categorical data; qualitative content analysis was used to summarize responses to the open-ended questions. RESULTS: Seventy-nine practices across 29 states were included in the final analyses. Eighty-five percent of practices continued to provide in-person care and nearly half cared for COVID-19 patients. Most practices pivoted to new use of video visits (76.3%). The most common challenges were as follows: patient lack of familiarity with telemedicine (81.9%), patient anxiety (77.8%), clinician anxiety (69.4%), technical difficulties reaching patients (66.7%), and supply shortages including masks, gown, and disinfecting materials (55.6%). Top adaptive strategies included using telemedicine (95.8%), reducing in-person visits (81.9%), providing resources for patients (52.8%), and staff training in PPE use and COVID testing (52.8%). CONCLUSIONS AND IMPLICATIONS: HBPC practices experienced a wide array of COVID-19-related challenges. Most continued to see patients in the home, augmented visits with telemedicine and creatively adapted to the challenges. An increased recognition of the need for in-home care by health systems who observed its critical role in caring for fragile older adults may serve as a silver lining to the otherwise dark sky of the COVID-19 pandemic.

Defining Telepresence as Experienced in Telehealth Encounters: A Dimensional Analysis.

PURPOSE: Telehealth's uptake has increased substantially in recent years, with an especially large jump in 2020 due to the emergence of COVID-19. This article provides background on and explores "telepresence" in healthcare literature. Telepresence strongly impacts the patient experience, but it is poorly defined in current research. The aim was to conceptually define telepresence using qualitative methods. DESIGN: Dimensional analysis was used to analyze telepresence in clinical literature and create a clearer definition of telepresence as a concept. Multiple databases were searched for articles related to telepresence. Thirteen international articles related to telepresence were selected for analysis. METHODS: Dimensional analysis allowed for multiple viewpoints to be explored within each distinct context and perspective. FINDINGS: Twenty-five dimensions were discovered within the articles, which were synthesized to seven core dimensions of telepresence: connection, technological mediation, experienced realism, trust, being supportive, collaboration, and emotional consequence. CONCLUSIONS: Telepresence is highly impactful on the patient's experience of telehealth care visits. The conceptual map produced by this dimensional analysis provides direction for clinicians to improve their ability to be present with patients during telehealth care. Potential implications include a starting point for future qualitative research, and the use of this dimensional analysis to inform clinical guidelines, improve clinician training, and assist in the development of new care models. CLINICAL RELEVANCE: A telepresence definition brings clarity to an ill-defined concept. COVID-19 magnifies the need for a better understanding of telepresence, which allows clinicians to improve telehealth encounters.

Telemedicine and Telehealth in Nursing Homes: An Integrative Review.

OBJECTIVES: Telemedicine and telehealth are increasingly used in nursing homes (NHs). Their use was accelerated further by the COVID-19 pandemic, but their impact on patients and outcomes has not been adequately investigated. These technologies offer promising avenues to detect clinical deterioration early, increasing clinician's ability to treat patients in place. A review of literature was executed to further explore the modalities' ability to maximize access to specialty care, modernize care models, and improve patient outcomes. DESIGN: Whittemore and Knafl's integrative review methodology was used to analyze quantitative and qualitative studies. SETTING AND PARTICIPANTS: Primary research conducted in NH settings or focused on NH residents was included. Participants included clinicians, NH residents, subacute patients, and families. METHODS: PubMed, Web of Science, CINAHL, Embase, PsycNET, and JSTOR were searched, yielding 16 studies exploring telemedicine and telehealth in NH settings between 2014 and 2020. RESULTS: Measurable impacts such as reduced emergency and hospital admissions, financial savings, reduced physical restraints, and improved vital signs were found along with process improvements, such as expedient access to specialists. Clinician, resident, and family perspectives were also discovered to be roundly positive. Studies showed wide methodologic heterogeneity and low generalizability owing to small sample sizes and incomplete study designs. CONCLUSIONS AND IMPLICATIONS: Preliminary evidence was found to support geriatrician, psychiatric, and palliative care consults through telemedicine. Financial and clinical incentives such as Medicare savings and reduced admissions to hospitals were also supported. NHs are met with increased challenges as a result of the COVID-19 pandemic, which telemedicine and telehealth may help to mitigate. Additional research is needed to explore resident and family opinions of telemedicine and telehealth use in nursing homes, as well as remote monitoring costs and workflow changes incurred with its use.

Development and protocol for a nurse-led telephonic palliative care program.

BACKGROUND: The COVID-19 pandemic has resulted in a profound transformation of health care delivery toward telemedicine models. PURPOSE: We present the structure of a nurse-led telephonic palliative program and operational metrics to influence further development of tele-palliative programs. METHODS: The nurses engage with seriously ill patients for 6 months with the goal of discussing advance care planning (ACP) and addressing self-identified issues related to their illness. FINDINGS: Of the first 100 program graduates, 78% were actively engaged and 51% named a health care agent and/or engaged in ACP. Of the 18 patients who died during the study, 13 (72%) were enrolled in hospice services. DISCUSSION: Our preliminary results indicate that seriously ill patients are willing to engage with nurses and to participate with discussions on ACP. CONCLUSION: Given the gaps in health care exposed by the COVID-19 pandemic, this innovative program serves as an important model for bringing palliative care directly to patients.

"At Home, with Care": Lessons from New York City Home-based Primary Care Practices Managing COVID-19.

BACKGROUND/OBJECTIVES: COVID-19 required rapid innovation throughout the healthcare system. Home-based primary care (HBPC) practices faced unique challenges maintaining services for medically complex older populations for whom they needed to adapt a traditionally hands-on, model of care to accommodate restrictions on in-person contact. Our aim was to determine strategies used by New York City (NYC)-area HBPC practices to provide patient care during the first wave of the COVID-19 pandemic with the goal of informing planning and preparation for home-based practices nationwide. DESIGN: Cross-sectional qualitative design using semi-structured interviews. SETTING: HBPC practices in the NYC metro area during spring 2020. PARTICIPANTS: HBPC leadership including clinical/medical directors, program managers, nurse practitioners/nursing coordinators, and social workers/social work coordinators (n = 13) at 6 NYC-area practices. MEASUREMENTS: Semi-structured interviews explored HBPC practices' COVID-19 care delivery challenges, adaptations, and advice for providers. Interviewers probed patient care, end-of-life care, telehealth, community-based services and staffing. Interviews were recorded and transcribed. Data were analyzed through a combined inductive and deductive thematic approach. RESULTS: Participants described care delivery and operational adaptations similar to those universally adopted across healthcare settings during COVID-19, such as patient outreach and telehealth. HBPC-specific adaptations included mental health services for patients experiencing depression and isolation, using multiple modalities of patient interactions to balance virtual care with necessary in-person contact, strategies to maintain patient trust, and supporting team connection of staff through daily huddles and emotional support during the surge of deaths among long-standing patients. CONCLUSION: NYC-area HBPC providers adapted care delivery and operations rapidly during the height of the COVID-19 pandemic. Keeping older, medically complex patients safe in their homes required considerable flexibility, transparency, teamwork, and partnerships with outside providers. As the pandemic continues to surge around the United States, HBPC providers may apply these lessons and consider resources needed to prepare for future challenges.

Family- and Person-Centered Interdisciplinary Telehealth: Policy and Practice Implications Following Onset of the COVID-19 Pandemic.

With the onset of the COVID-19 pandemic, telehealth was thrust to the forefront, becoming one of the most predominant forms of care almost overnight. Despite years of research, practice, and policymaking, tenets for providing telehealth in an interdisciplinary, family- and person-centered fashion, and across a wide breadth of settings remain underdeveloped. In addition, although telehealth has the potential to increase equity in care, it can also further exacerbate disparities. The current article discusses the opening created by the pandemic and provides recommendations for how to make permanent changes in telehealth policy and practice to allow for interdisciplinary, person- and family-centered care while also taking care to address issues of equity and ethics and privacy issues related to telehealth and remote monitoring. [Journal of Gerontological Nursing, 46(9), 9-13.].