We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
Context: Digital health offers innovative mechanisms to engage in palliative care, yet digital systems are typically designed for individual users, rather than integrating the patient’s caregiving “social convoy” (i.e. family members, friends, neighbors, formal caregiving supports) to maximize benefit. As older adults with serious illness increasingly rely on the support of others, there is a need to foster effective integration of the social convoy in digitally supported palliative care.
Objectives: Conduct a qualitative study examining patient, social convoy, and health care provider perspectives on digital health for palliative care to inform the design of future digital solutions for older adults with serious illness and their social convoy.
Methods: Grounded theory approach using semi-structured interviews (N=81) with interprofessional health care providers, older adults with serious illness, and their social convoy participants at home, clinic, or Zoom. Interviews were conducted using question guides relevant to the participant group and audio recorded for verbatim transcription. Two coders lead the inductive analysis using open and axial coding.
Results: Thematic results aligned with the human centered design framework, which is a participatory approach to the design process that incorporates multiple user stakeholders to develop health solutions. The human centered design process and corresponding theme included: (1) Empathy: Patient, Caregiver, and Provider Experience reports participants’ experience with managing serious illness, caregiving, social support, and technology use. (2) Define: Reactions to Evidence-Based Care Concepts and Barriers illustrates participants’ perspectives on the domains of palliative care ranging from symptom management to psychosocial-spiritual care. (3) Ideation: Desired Features reports participant recommendations for designing digital health tools for palliative care domains.
Conclusion: Digital health provides an opportunity to expand the reach of geriatric palliative care interventions. This paper documents human centered preferences of geriatric palliative care digital health to ensure technologies are relevant and meaningful to health care providers, patients, and the caregiving social convoy.
Family meetings are fundamental to the practice of palliative medicine and serve as a cornerstone of intervention on the inpatient palliative care consultation service. The COVID-19 pandemic disrupted the structure and process of in-patient family meetings, due to necessary but restrictive visitor policies that did not allow families to be present in the hospital. We describe implementation of telemedicine to facilitate electronic family (e-family) meetings to facilitate in-patient palliative care. Of 67 scheduled meetings and performed by the palliative care service, only 2 meetings were aborted for a 97% success rate of scheduled meetings occurring. On a five-point Likert-type scale, the average clinician rating of the e-family meeting overall quality was 3.18 (SD, 0.96). Of the 10 unique family participants that agreed to be interviewed, their overall ratings of the e-family meetings were high. Over 80% of respondent families participants reported that they agreed or strongly agreed that they were able to ask all of their questions, felt comfortable expressing their thoughts and feelings with the clinical team, felt like they understood the care their loved one received, and that the virtual family meeting helped them trust the clinical team. Of patients who were able to communicate 50% of family respondents reported that the e-family meeting helped them understand their loved one’s thoughts and wishes.
The coronavirus disease 2019 surge in New York City created an increased demand for palliative care (PC) services. In staff-limited settings such as safety net systems, and amid growing reports of health care worker illness, leveraging help from less-affected areas around the country may provide an untapped source of support. A national social media outreach effort recruited 413 telepalliative medicine volunteers (TPMVs). After expedited credentialing and onboarding of 67 TPMVs, a two-week pilot was initiated in partnership with five public health hospitals without any previous existing telehealth structure. The volunteers completed 109 PC consults in the pilot period. Survey feedback from TPMVs and on-site PC providers was largely positive, with areas of improvement identified around electronic health record navigation and continuity of care. This was a successful, proof of concept, and quality improvement initiative leveraging TPMVs from across the nation for a PC pandemic response in a safety net system.
In the setting of the coronavirus disease 2019 (COVID-19) pandemic, new strategies are needed to address the unique and significant palliative care (PC) needs of patients with COVID-19 and their families, particularly when health systems are stressed by patient surges. Many PC teams rely on referral-based consultation methods that can result in needs going unidentified and/or unmet. Here, we describe a novel system to proactively identify and meet the PC needs of all patients with COVID-19 being cared for in our hospital's intensive care units. Patients were screened through a combination of chart review and brief provider interview, and PC consultations were provided via telemedicine for those with unmet needs identified. In the first six weeks of operation, our pilot program of proactive screening and outreach resulted in PC consultation for 12 of the 29 (41%) adult patients admitted to the intensive care unit with COVID-19 at our institution. Consultations were most commonly for patient and family support as well as for goals of care and advance care planning, consistent with identified PC needs within this unique patient population.
Aim: To describe the experience involving the early introduction of palliative care (PC) in oncological patients treated within the pediatrics oncology unit of the Istituto Nazionale Tumori of Milan and compare this cohort to a cohort of patients resident in the same area treated before the introduction of early palliative care.
Methods: A virtual team was assembled in 2015. The PC providers operate outside the hospital. Conference calls were scheduled to discuss patients’ problems. This sample was compared with the clinical records of patients residing in the same area who died between 2009-2014.
Results: Between January 2015 and April 2019, 41 patients residing in the Milan area mainly with CNS tumors or sarcomas, were referred to the team. Comparing the results with the previous cohort there was a rise in the number of patients dying at home or in a hospice and the duration of PC increased over time . From 2015 none of the patients died in an intensive care unit.
Conclusion: Patients managed by the virtual team were able to continue their cancer treatments, take part in Phase I trials and receive PC. All patients with a poor prognosis should have PC at an early stage.
NYC Health + Hospitals (NYC H+H) is the largest safety net health care delivery system in the United States. Prior to the novel coronavirus disease (COVID-19) pandemic, NYC H+H served over one million patients, including the most vulnerable New Yorkers, and billed fewer than 500 telehealth visits monthly. Once the pandemic struck, we established a strategy to allow us to continue to serve existing patients and treat the surge of new patients. Starting in March 2020 we were able to transform the system using virtual care platforms through which we conducted almost 83,000 billable televisits in one month and more than 30,000 behavioral health encounters via telephone and video. Telehealth also enabled us to support patient-family communication, post-discharge follow-up, and palliative care for COVID-19 patients. Expanded Medicaid coverage and insurance reimbursement for telehealth played a pivotal role in this transformation. As we move to a new blend of virtual and in-person care, it is vital that the major regulatory and insurance changes undergirding our COVID-19 telehealth response be sustained to protect access for our most vulnerable patients.
Background: As the death rate numbers in the United States related to COVID-19 are in the tens of thousands, clinicians are increasingly tasked with having serious illness conversations. However, in the setting of infection control policies, visitor restrictions, social distancing, and a lack of personal protective equipment, many of these important conversations are occurring by virtual visits.
Objective: From our experience with a multisite study exploring the effectiveness of virtual palliative care, we have identified key elements of webside manner that are helpful when conducting serious illness conversations by virtual visit.
Results: The key elements and components of webside manner skills are proper set up, acquainting the participant, maintaining conversation rhythm, responding to emotion, and closing the visit. Other considerations that may require conversion to phone visits include persistent technical difficulties, lack of prerequisite technology to conduct virtual visits, patients who are too ill to participate, or who find virtual visits too technically challenging.
Conclusions: Similar to bedside manner, possessing nuanced verbal and nonverbal webside manner skills is essential to conducting serious illness conversations during virtual visits.
Context: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts.
Objectives: The objective of this qualitative study was to learn from the experiences of rural hospice nurses caring for children at the end of life using telehealth modalities to inform palliative communication.
Methods: Voice-recorded qualitative interviews with rural hospice nurse telehealth users inquiring on nurse experiences with telehealth. Semantic content analysis was used.
Results: Fifteen hospice nurses representing nine rural hospice agencies were interviewed. Nurses participated in an average of eight telehealth visits in the three-months prior. Nurses were female with mean age 38 years and average 7 years hospice nursing experience. Five themes about telehealth emerged: accessible support, participant inclusion, timely communication, informed and trusted planning, and familiarity fostered. Each theme had both benefits and cautions associated as well as telehealth suggestions. Nurses recommended individualizing communication, pacing content, fostering human connection, and developing relationships even with technology use.
Conclusions: The experiences of nurses who utilize telehealth in their care for children receiving end of life care in rural regions may enable palliative care teams to understand both the benefits and challenges of telehealth use. Nurse insights on telehealth may help palliative care teams better honor the communication needs of patients and families while striving to improve care access.
This paper describes a qualitative study conducted in the context of developing a novel ePRO (electronic Patient Reported Outcome) based palliative care intervention for cancer patients. The aim of the study was to elicit end-users' needs, judgements of the MyPal system and recommendations for improvement. A participatory design was chosen as the value of this approach has been well established in eHealth systems' design as well as the development of novel healthcare services. Focus groups with Chronic Lymphocytic Leukemia (CLL) patients were conducted at the Centre for Research and Technology (CERTH) in Greece using specially designed vignettes and discussion guides. Findings revealed that patients saw MyPal offering increased, direct contact with the healthcare team, freedom of physical and psychological symptom reporting as well as valid and reliable information. However, they had concerns about the appropriate use of data collected by MyPal, the efficiency of data analysis and data security adopted for sensitive personal information. The participatory design approach used has been very useful in encouraging the genuine involvement of participants, a factor which over time can empower and promote participants' long-term engagement.
Many critically ill patients with COVID-19 need specialty level palliative care to manage symptoms, conduct goals of care conversations, and facilitate medical decision making in ethically and emotionally charged situations. During the apex of the COVID-19 crisis in New York, the Adult Palliative Care Service at Columbia University Irving Medical Center (CUIMC)/NewYork-Presbyterian (NYP) received a 7-fold increase in consultation requests. This unprecedented increase in demand outpaced the palliative care team's ability to respond. We describe the rapid development and implementation of a scalable virtual consultation model staffed by out-of-state palliative care specialist volunteers.
This case report describes a pediatric hospice provider in Scotland and their experience implementing a telehospice program in response to COVID-19. Children's Hospices Across Scotland (CHAS) is the only provider of pediatric hospice care in the entire of Scotland, and we describe their experience offering pediatric telehospice. CHAS had strategically planned to implement telehospice, but COVID-19 accelerated the process. The organization evaluated its pediatric clinical and wrap-around hospice services and rapidly migrated them to a virtual environment. They creatively added new services to meet the unique needs of the entire family, who were caring for a child at end of life during COVID-19. CHAS's experience highlights the planning and implementing processes of telehospice with key lessons learned, while acknowledging the challenges inherent in using technology to deliver hospice care.
BACKGROUND: Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care.
OBJECTIVE: The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care.
METHODS: A scoping review was conducted using the methodological framework of Arksey and O'Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data.
RESULTS: The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home.
CONCLUSIONS: The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.
Outpatient palliative care (PC) improved quality of life and symptoms among patients with Parkinson disease and related disorders in a trial in JAMA Neurology.
The study’s 210 patients and 175 caregivers were randomly assigned to outpatient integrative PC or to standard care. Every 3 months for a year, participants received PC visits either in person or via telemedicine from a neurologist, social worker, chaplain, and nurse with guidance from a palliative medicine specialist. Standard care was provided by a neurologist and a primary care clinician.
Background: Telemedicine has been proposed as a means to improve access to palliative care. There is limited information about how health care workers feel about providing this kind of care and how families feel about receiving it.
Objective: this study assesses provider and caregiver perceptions of the safety and efficacy of the Distance Support Program (DSP) of a home-based palliative care provider in Beirut, Lebanon.
Design: interviews were conducted with 8 physicians and nurses who provided that care through the DSP as well as 49 caregivers of patients who received care between January 2015 and December 2017. Interviews were analyzed thematically.
Results: Although they would have preferred having access to home visits, caregivers reported that they valued the information, guidance, and emotional support they received through the DSP and they appreciated having telephone access to providers. Health providers reported the DSP was more efficient than home visits. They felt it was safest when delivered by an experienced provider, they had access to a reliable caregiver, and the patient was assessed at least once. They felt it was important to communicate clear expectations to patients and caregivers when delivering care by telephone.
Conclusions: Telemedicine can be a useful tool to provide palliative care services in settings where they would otherwise not be available.
Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians.
Methods: This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age =65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2.
Results: Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the W group. Phase 2: We incorporated ethnic group-specific recommendations for the culturally based PC consult into the standard PC consult. Phase 3: We tested feasibility and acceptability of the ethnically specific PC consult on 18 of 32 eligible patients. The telehealth system worked well. PC MD implementation fidelity was 98%. Most patients were non-verbal and could not rate satisfaction with consult; however, caregivers were satisfied or very satisfied. Hospital leadership supported program implementation, but hospitalists only referred 18 out of 28 eligible patients.
Conclusions: The first culturally based PC consult program in the United States was developed in partnership with AA and W Southern rural community members. This program was feasible to implement in a small rural hospital but low referral by hospitalists was the major obstacle. Program effectiveness is currently being tested in a randomized clinical trial in three southern, rural states in partnership with hospitalists. This method can serve as a model that can be replicated and adapted to other settings and with other ethnic groups.
Within weeks, COVID-19 has transformed our practice of palliative care and clinical medicine as we know it. Telemedicine has emerged as a critical technology to bring medical care to patients while attempting to reduce the transmission of COVID-19 among patients, families, and clinicians. It is also increasingly necessary to preserve scarce resources like personal protective equipment. In this article, we share just-in-time tips to support palliative care clinicians and program leaders in providing the best care possible by telemedicine. These quick, practical tips cover telemedicine setup, patient considerations, and clinician considerations. Next steps include ensuring equitable access to affordable telemedicine technology for vulnerable populations through creative solutions and financing, and dedicated attention to telemedicine evaluation and quality improvement.
Palliative and hospice care services produce immense benefits for patients living with serious illness and for their families. Due to the national shift toward value-based payment models, health systems and payers share a heightened awareness of the need to incorporate palliative and hospice services into their service mix for seriously ill patient populations. During the last decade, a tremendous amount of capital has been invested to better integrate information technology into healthcare. This includes development of technologies to promote utilization of palliative and hospice services. However, no coordinated strategy exists to link such efforts together to create a cohesive strategy that transitions from identification of patients through receipt of services. A Serious Illness Digital Ecosystem (SIDE) is the intentional aggregation of disparate digital and mobile health technologies into a single system that connects all of the actors involved in serious illness patient care. A SIDE leverages deployed health technologies across disease continuums and geographic locations of care to facilitate the flow of information among patients, providers, health systems, and payers. Five pillars constitute a SIDE, and each one is critical to the success of the system. The 5 pillars of a SIDE are: Identification, Education, Engagement, Service Delivery, and Remote Monitoring. As information technology continues to evolve and becomes a part of the care delivery landscape, it is necessary to develop cohesive ecosystems that inform all parts of the serious illness patient experience and identifies patients for the right services, at the right time.
Importance: Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life.
Objective: To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks.
Design, Setting, and Participants: This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-to-day medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018.
Intervention: Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention.
Main Outcomes and Measures: The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving.
Results: A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient’s spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, -0.4; 95% CI, -5.1 to 4.3; Cohen d = -0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.3 [0.3] vs 0.4 [0.3]; difference, -0.1 [0.5]; d = -0.02) or depression measure (mean [SE] improvement from baseline, -0.2 [0.4] vs -0.3 [0.3]; difference, 0.1 [0.5]; d = 0.03). No between-group differences were observed in the Montgomery-Borgatta Caregiver Burden scales (d range, -0.18 to 0.0). Differences in secondary outcomes were also not significant (d range, -0.22 to 0.0).
Conclusions and Relevance: This 2-site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes.