BACKGROUND: In the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important.
OBJECTIVE: We aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach.
METHODS: Family conferences comprised three phases designed according to telehealth implementation guidelines-the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: "team talk," "option talk," and "decision talk." The model has been implemented at a national cancer treatment center in Taiwan since February 2020.
RESULTS: From February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients' mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as good or very good (36%), whereas 9 were neutral (64%).
CONCLUSIONS: Smartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic.
BACKGROUND: With a growing world population, a longer life expectancy, and more deaths due to chronic diseases, the need for palliative care is increasing. Palliative care aims to alleviate suffering and to promote well-being for patients with progressive, incurable disease or injury. E-Health entails using of information and communication technology for healthcare provision. It is unclear to how patients experience use of eHealth technology within palliative care.
METHODS: The aim of this study was to describe patients' experiences of eHealth in palliative care. A systematic integrative review was performed using six databases: Cinahl Complete; MEDLINE; PubMed; Psychology and Behavioral Sciences Collection; Nursing and Allied Health; and PsycINFO. Twelve studies met the inclusion criteria of adult patients in palliative care, English language, published 2014-2019: comprising 397 patients. Six studies were from European countries, four from North America, one from South America and one from Oceania. Seven were feasibility or pilot studies.
RESULTS: The findings are synthesized in the main theme: E-health applications - promoting communication on patients' and families' terms, and three sub- themes: usability and feasibility of eHealth applications; symptom control and individualized care; and use of eHealth applications increased sense of security and patient safety. Patients' experiences were that eHealth promoted individualized care, sense of security, better symptom management and participation in care. Communication was facilitated by the inherent flexibility provided by technology.
CONCLUSIONS: E-Health applications seem promising in promoting equal, individualized care, and may be a tool to endorse accessibility and patient participation in palliative care settings. Indications are that eHealth communication resulted in patients and families receiving more information, which contributed to experiences of patient safety and feelings of security. At organizational and societal levels, eHealth may contribute to sustainable development and more efficient use of resources.
Les aspects de télémédecine concernant la prise en charge des patients avec un accident vasculaire cérébral (AVC) sont dénommés « téléAVC », et font partie intégrante de l’organisation de la filière de prise en charge depuis la mise en place du Plan national « AVC 2010–2014 ». Il permet une équité de prise en charge à tous les stades de la maladie en permettant un accès facilité à une unité neurovasculaire (UNV). Le téléAVC permet le partage d’informations, de compétences et de responsabilités entre praticiens lors de tous les actes de télémédecine (téléconsultation, téléexpertise, téléassistance et télésurveillance). La mise en place des outils de télémédecine nécessite un cahier de charges précis et des procédures définissant le rôle de chaque intervenant (urgentistes, radiologue, neurologues, etc.). Les modèles du téléAVC s’adaptent aux besoins de chaque territoire et selon les ressources disponibles (plateaux d’imagerie, service d’accueil d’urgences, UNV, unité de neuroradiologie interventionnel, etc.) en dessinant des organisations hospitalières graduées. Il est habituel de séparer les expériences de la phase aiguë, menées en préhospitalier ou en hospitalier (de l’appel au Centre 15, à l’envoi d’ambulance équipée de moyen vidéo, voire de scanner embarqué), de celles conduites dans la phase chronique. De même, les prises en charge peuvent être parcellaires (accès seulement à une thrombolyse), ou complètement intégrées organisant l’ensemble du parcours AVC. La majorité des expériences de téléAVC portent sur la prise en charge aiguë. Les études médicoéconomiques restent limitées. La télémédecine appliquée aux AVC contribue non seulement à l’effet de substitution du fait de ressources limitées, mais aussi à la diffusion des connaissances et des compétences pour une prise en charge optimale du bon patient, au bon moment, au bon endroit et avec des thérapeutiques adaptées. Le Télé-AVC est une réponse à une raréfaction des ressources médicales, une aide face à la technicité de prise en charge des patients AVC et participe ainsi à l’égalité à l’accès aux soins et à l’efficacité du système de soins.émédecine et accident vasculaire cérébral : « Rôle de la télémédecine dans les accidents vasculaires cérébraux »
Introduction: This study assessed the feasibility of integrating telehealth-assisted home-based specialist palliative care (TH-SPC) into a rural community setting.
Methods: This was a prospective mixed-methods pilot study conducted in rural Victoria, Australia. Newly engaged adult patients and their caregivers of a community palliative-care service received video consultations with metropolitan-located specialist palliative-care physicians, alongside standard care. Those eligible patients who failed to receive TH-SPC were treated as a control group upon analysis. Data were collected over three months and at 30 days prior to death. Feasibility outcomes included efficiency of process, user satisfaction, clinical outcome and health-care metrics.
Results: A total of 21 patients completed the study, with an average age of 70.4 years and an average survival of 5.8 months. Fourteen patients received TH-SPC, and seven received standard care alone. Patient–caregiver feedback for TH-SPC showed a high level of overall satisfaction. Compared to standard care, the TH-SPC group demonstrated less functional decline from baseline at two weeks (Australia-modified Karnofsky Performance Status: –1.35 vs. –12.30, p = 0.067) and three months (8.48 vs. –10.79, p = 0.04) after the intervention. At 30 days prior to death, functional status remained better in the TH-SPC group, with fewer per capita community palliative-care nursing visits (5.46 vs. 9.32, effect size = 0.7), general practitioner visits (0.13 vs. 3.88, effect size = 1.34) and hospital admissions (0.02 vs. 0.2, effect size = 0.65).
Discussion: TH-SPC was successfully integrated into rural community-based palliative care, with potential benefits in performance status preservation and health-care resource utilisation.
COVID-19 has overwhelmed the capacity of health care systems, limiting access to supportive and palliative care for patients with advanced cancer. Telemedicine has emerged as a tool to provide care continuity to patients while limiting the risk of contagion. However, implementing telemedicine in resource-limited settings is challenging. We report the results of a multidisciplinary patient-navigator-led telemedicine supportive care program in Mexico City. One-hundred sixty-three telemedicine interventions were provided to 45 patients (median age 68, 57% female). A quarter of the patients had less than or equal to elementary school education, and 15% lived in a rural area. The most common interventions were psychological care (33%), pain and symptom control (25%), and nutritional counseling (13%). Half of the interventions were provided by video conferencing. The most common patient-reported barrier was limited experience using communication technology (). Our results demonstrate the feasibility of providing supportive and palliative care interventions using telemedicine in resource-limited settings.
BACKGROUND: Health systems need evidence about how best to deliver home-based palliative care (HBPC) to meet the growing needs of seriously ill patients. We hypothesised that a tech-supported model that aimed to promote timely inter-professional team coordination using video consultation with a remote physician while a nurse is in the patient's home would be non-inferior compared with a standard model that includes routine home visits by nurses and physicians.
METHODS: We conducted a pragmatic, cluster randomised non-inferiority trial across 14 sites (HomePal Study). Registered nurses (n=111) were randomised to the two models so that approximately half of the patients with any serious illness admitted to HBPC and their caregivers were enrolled in each study arm. Process measures (video and home visits and satisfaction) were tracked. The primary outcomes for patients and caregivers were symptom burden and caregiving preparedness at 1-2 months.
RESULTS: The study was stopped early after 12 months of enrolment (patients=3533; caregivers=463) due to a combination of low video visit uptake (31%), limited substitution of video for home visits, and the health system's decision to expand telehealth use in response to changes in telehealth payment policies, the latter of which was incompatible with the randomised design. Implementation barriers included persistent workforce shortages and inadequate systems that contributed to scheduling and coordination challenges and unreliable technology and connectivity.
CONCLUSIONS: We encountered multiple challenges to feasibility, relevance and value of conducting large, multiyear pragmatic randomised trials with seriously ill patients in the real-world settings where care delivery, regulatory and payment policies are constantly shifting.
The COVID-19 pandemic has resulted in unprecedented levels of social isolation which has negatively impacted older patients in particular on multiple levels. We present a case of an older patient with several complex psychosocial issues who was hospitalized and died from COVID-19. The social isolation required during the pandemic compounded patient and family stressors and diminished the patient's access to clinicians and to his usual support network and coping strategies. We describe how technology and tele-palliative care were utilized to reconnect the patient with clinicians and family and to provide clinical care that enhanced coping skills and support. Using telemedicine to restructure the approach to care was crucial in improving multiple domains of care and can be considered a resource for caring for older adults, especially during the challenging times brought on by the COVID-19 pandemic.
Background: The major growth of mobile technologies in the recent years has led to the development of medical-monitoring applications, particularly on smartphones.
Aim: The aim of this study was to review the use of m-health in the monitoring of patients with chronic pathologies in order to consider what could be adapted for palliative care patients at home.
Design: A systematic review of the English and French literature was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria.
Date Sources: The review screened the following databases: PUBMED, SCOPUS, COCHRANE, SCIENCE DIRECT, SUDOC, and EM-Premium, screening studies published between 2008 and 2018. The selection of articles was done by the main investigator. All studies concerning the use of m-Health apps for patients with chronic diseases were included.
Results: From the 337 selected publications, 8 systematic reviews and 14 original studies were included. The main uses of m-Health apps were biological and clinical monitoring (particularly concerning the symptoms) in 75% of the applications, disease self-management in 64% of the applications, and therapeutic patient education in 50% of the applications, with remote monitoring.
Conclusions: The development of an m-Health application could become a complementary monitoring tool during palliative care. However, it seems important to question the impact of technique in the professional–patient relationship and avoid the pitfalls of standardizing palliative care and reducing the patient to a “sick” health technician. A future step would then be to define which health-care professional would be in charge of this “m-monitoring.”
BACKGROUND: Coronavirus-2 (COVID-19) is a global pandemic. As of August 21, mortality from COVID-19 has reached almost 200,000 people, with the United States leading the globe in levels of morbidity and mortality. Large volumes of high-acuity patients, particularly those of advanced age and with chronic comorbidities, have significantly increased the need for palliative care resources beyond usual capacity. More specifically, COVID-19 has changed the way we approach patient and family member interactions.
DISCUSSION: Concern for nosocomial spread of this infection has resulted in strict visitation restrictions that have left many patients to face this illness, make difficult decisions, and even die, alone in the hospital. To meet the needs of COVID patients, services such as Emergency Medicine and Palliative Care have responded rapidly by adopting novel ways of practicing medicine. We describe the use of telepalliative medicine (TM) implemented in an emergency department (ED) setting to allow family members the ability to interact with their loved ones during critical illness, and even during the end of life. Use of this technology has helped facilitate goals of care discussions, in addition to providing contact and closure for both patients and their loved ones.
CONCLUSION: We describe our rapid and ongoing implementation of TM consultation for our ED patients and discuss lessons learned and recommendations for others considering similar care models.
Background: Studies have shown that telehealth applications in palliative care are feasible, can improve quality of care, and reduce costs but few studies have focused on user acceptance of current technology applications in palliative care. Furthermore, the perspectives of health administrators have not been explored in palliative care and yet they are often heavily involved, alongside providers, in the coordination and use of health technologies. The study aim was to explore both health care provider and administrator perceptions regarding the usefulness and ease of using technology in palliative care.
Methods: The Technology Acceptance Model (TAM) was used as the guiding theoretical framework to provide insight into two key determinants that influence user acceptance of technology (perceived usefulness and ease of use). Semi-structured interviews (n = 18) with health providers and administrators with experience coordinating or using technology in palliative care explored the usefulness of technologies in palliative care and recommendations to support adoption. Interview data were analyzed using inductive thematic analysis to identify common, meaningful themes.
Results: Four themes were identified; themes related to perceived usefulness were: enabling remote connection and information-sharing platform. Themes surrounding ease of use included: integration with existing IT systems and user-friendly with ready access to technical support. Telehealth can enable remote connection between patients and providers to help address insufficiencies in the current palliative care environment. Telehealth, as an information sharing platform, could support the coordination and collaboration of interdisciplinary providers caring for patients with palliative needs. However, health technologies need to passively integrate with existing IT systems to enhance providers’ workflow and productivity. User-friendliness with ready access to technical support was considered especially important in palliative care as patients often experience diminished function.
Conclusion: Participants’ perspectives of technology acceptance in palliative care were largely dependent on their potential to help address major challenges in the field without imposing significant burden on providers and patients.
L’épidémie de Covid-19 qui avait débuté en novembre en Chine est devenue une épidémie en France à partir du 16 mars 2020 avec la déclaration du confinement de la population afin de diminuer la propagation du virus. Dès le 17 mars et jusqu’au 27 mars 2020, la cellule de veille de la Société française de gériatrie et gérontologie décide de mener une enquête pour analyser la mise en place de la mobilisation des structures de gériatrie, étant donné que cette épidémie avait montré qu’elle entraînait une surmortalité majoritairement chez les personnes âgées. L’enquête a pu réunir la réponse de 34 structures, dont neuf étaient situées en zone cluster de forte épidémie. Des services de court séjour gériatriques
dédiés pour les patients infectés par le Covid-19 étaient présents dans huit établissements, uniquement hors des zones clusters. Neuf soins de suite et de rééducation gériatriques ont été dédiés, une activité supplémentaire de télémédecine concernait 35 % des établissements, et des moyens d’écoute des familles, d’animation et de communication par tablettes concernaient 36% des établissements. Cette enquête est une photographie d’un moment initial de l’épidémie. Elle donne l’occasion de décrire le contexte dans lequel cette épidémie est survenue en ce qui concerne la politique gériatrique, et d’apprécier la réactivité et l’inventivité de ces services pour répondre aux besoins des personnes âgées.
Background: Patients living in rural areas experience a variety of unmet needs that result in healthcare disparities. The triple threat of rural geography, racial inequities, and older age hinders access to high-quality palliative care (PC) for a significant proportion of Americans. Rural patients with life-limiting illness are at risk of not receiving appropriate palliative care due to a limited specialty workforce, long distances to treatment centers, and limited PC clinical expertise. Although culture strongly influences people’s response to diagnosis, illness, and treatment preferences, culturally based care models are not currently available for most seriously ill rural patients and their family caregivers. The purpose of this randomized clinical trial (RCT) is to compare a culturally based tele-consult program (that was developed by and for the rural southern African American (AA) and White (W) population) to usual hospital care to determine the impact on symptom burden (primary outcome) and patient and care partner quality of life (QOL), care partner burden, and resource use post-discharge (secondary outcomes) in hospitalized AA and White older adults with a life-limiting illness.
Methods: Community Tele-pal is a three-site RCT that will test the efficacy of a community-developed, culturally based PC tele-consult program for hospitalized rural AA and W older adults with life-limiting illnesses (n = 352) and a care partner. Half of the participants (n = 176) and a care partner (n = 176) will be randomized to receive the culturally based palliative care consult. The other half of the patient participants (n = 176) and care partners (n = 176) will receive usual hospital care appropriate to their illness.
Discussion: This is the first community-developed, culturally based PC tele-consult program for rural southern AA and W populations. If effective, the tele-consult palliative program and methods will serve as a model for future culturally based PC programs that can reduce patients’ symptoms and care partner burden.
Background: Nearly 3 million U.S. family caregivers support someone with cancer. However, oncology clinic-based service lines that proactively screen, assess, and support cancer caregivers are nearly nonexistent.
Objective: To examine first-year experiences of a nurse-led clinic-based telehealth support service (FamilyStrong) for family caregivers of patients with recently diagnosed grade IV brain tumors.
Methods: This is a retrospective evaluation of operational outcomes from initial implementation of the FamilyStrong Service, developed in partnership with Caregiver and Bereavement Support Services at the University of Alabama at Birmingham (UAB) and the UAB Center for Palliative and Supportive Care. From August 2018 to December 2019, 53 family caregivers were proactively identified and enrolled by a palliative care nurse, working approximately one day/week, who performed monthly caregiver distress thermometer screenings by phone and provided emotional, educational, problem-solving, and referral support.
Results: Enrolled family caregivers were a mean age of 53.5 years and mostly female (62.3%), full- or part-time employed (67.9%), and the patient's spouse/partner (79.3%). Caregivers provided support 6.7 days/week for 11.2 hours/day. The palliative care nurse performed 235 distress screenings and provided support that included 68 documented instances of emotional, problem-solving, and educational support, 41 nurse-facilitated communications with the neuro-oncology team about patient issues, and 24 referrals to UAB and community services (e.g., counseling). The most common problems caregivers wanted assistance with included: managing their relative's health condition and symptoms (51%), coordinating care/services (21%), and planning for the future/advance care planning (17%).
Discussion: The FamilyStrong Program is among the first "real world" oncology clinic-based formal support services for advance cancer family caregivers.
BACKGROUND: The COVID-19 pandemic has highlighted the essential role of palliative care to support the delivery of compassionate, goal-concordant patient care. We created the web-based application, PalliCOVID (https://pallicovid.app/), in April 2020 to provide all clinicians with convenient access to palliative care resources and support. PalliCOVID features evidence-based clinical guidelines, educational content, and institutional protocols related to palliative care for COVID-19 patients. It is a publicly available resource accessible from any mobile device or desktop computer that provides clinicians with access to palliative care guidance across a variety of care settings, including the emergency department, hospital ward, intensive care unit, and primary care practice.
OBJECTIVE: The primary objective of this study was to evaluate usage patterns of PalliCOVID to understand user behavior in relation to this palliative care content platform during the period of the local peak of COVID-19 infection in Massachusetts.
DESIGN: We retrospectively analyzed de-identified usage data collected by Google Analytics from the first day of PalliCOVID's launch on April 7, 2020 until May 1, 2020, the time period that encompassed the local peak of the COVID-19 surge in Massachusetts.
MEASURE: ments: User access data was collected and summarized by Google Analytics software that had been integrated into the PalliCOVID web application.
RESULTS: 2,042 users accessed PalliCOVID and viewed 4,637 pages from April 7 to May 1, 2020. Users spent an average of 2 minutes and 6 seconds per session. 81% of users were first-time visitors, while the remaining 19% were return visitors. The majority of users accessed PalliCOVID from the United States (87%), with a large proportion of users coming from Boston and the surrounding cities (32% of overall users).
CONCLUSIONS: PalliCOVID is one example of a scalable digital health solution that can bring palliative care resources to frontline clinicians. Analysis of PalliCOVID usage patterns has the potential to inform the improvement of the platform to better meet the needs of its user base and guide future dissemination strategies. The quantitative data presented here, although informative about user behavior, should be supplemented with future qualitative research to further define the impact of this tool and extend our ability to deliver clinical care that is compassionate, rational, and well-aligned with patients' values and goals.
Importance: National guidelines recommend early palliative care for patients with advanced heart failure, which disproportionately affects rural and minority populations.
Objective: To determine the effect of an early palliative care telehealth intervention over 16 weeks on the quality of life, mood, global health, pain, and resource use of patients with advanced heart failure.
Design, Setting, and Participants: A single-blind, intervention vs usual care randomized clinical trial was conducted from October 1, 2015, to May 31, 2019, among 415 patients 50 years or older with New York Heart Association class III or IV heart failure or American College of Cardiology stage C or D heart failure at a large Southeastern US academic tertiary medical center and a Veterans Affairs medical center serving high proportions of rural dwellers and African American individuals.
Interventions: The ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers) intervention comprises an in-person palliative care consultation and 6 weekly nurse-coach telephonic sessions (20-40 minutes) and monthly follow-up for 48 weeks.
Main Outcomes and Measures: Primary outcomes were quality of life (as measured by the Kansas City Cardiomyopathy Questionnaire [KCCQ]: score range, 0-100; higher scores indicate better perceived health status and clinical summary scores =50 are considered “fairly good” quality of life; and the Functional Assessment of Chronic Illness Therapy–Palliative-14 [FACIT-Pal-14]: score range, 0-56; higher scores indicate better quality of life) and mood (as measured by the Hospital Anxiety and Depression Scale [HADS]) over 16 weeks. Secondary outcomes were global health (Patient Reported Outcome Measurement System Global Health), pain (Patient Reported Outcome Measurement System Pain Intensity and Interference), and resource use (hospital days and emergency department visits).
Results: Of 415 participants (221 men; baseline mean [SD] age, 63.8 [8.5] years) randomized to ENABLE CHF-PC (n = 208) or usual care (n = 207), 226 (54.5%) were African American, 108 (26.0%) lived in a rural area, and 190 (45.8%) had a high-school education or less, and a mean (SD) baseline KCCQ score of 52.6 (21.0). At week 16, the mean (SE) KCCQ score improved 3.9 (1.3) points in the intervention group vs 2.3 (1.2) in the usual care group (difference, 1.6; SE, 1.7; d = 0.07 [95% CI, -0.09 to 0.24]) and the mean (SE) FACIT-Pal-14 score improved 1.4 (0.6) points in the intervention group vs 0.2 (0.5) points in the usual care group (difference, 1.2; SE, 0.8; d = 0.12 [95% CI, -0.03 to 0.28]). There were no relevant between-group differences in mood (HADS-anxiety, d = -0.02 [95% CI, –0.20 to 0.16]; HADS-depression, d = –0.09 [95% CI, –0.24 to 0.06]).
Conclusions and Relevance: This randomized clinical trial with a majority African American sample and baseline good quality of life did not demonstrate improved quality of life or mood with a 16-week early palliative care telehealth intervention. However, pain intensity and interference (secondary outcomes) demonstrated a clinically important improvement.
Coronavirus disease 2019 has created unprecedented challenges for amyotrophic lateral sclerosis (ALS) clinical care and research in the United States. Traditional evaluations for making an ALS diagnosis, measuring progression, and planning interventions rely on in-person visits that may now be unsafe or impossible. Evidence- and experience-based treatment options, such as multidisciplinary team care, feeding tubes, wheelchairs, home health, and hospice, have become more difficult to obtain and in some places are unavailable. In addition, the pandemic has impacted ALS clinical trials by impairing the ability to obtain measurements for trial eligibility, to monitor safety and efficacy outcomes, and to dispense study drug, as these also often rely on in-person visits. We review opportunities for overcoming some of these challenges through telemedicine and novel measurements. These can reoptimize ALS care and research in the current setting and during future events that may limit travel and face-to-face interactions.
Telemedicine technology has become essential to healthcare delivery in the COVID-19 era, but concerns remain regarding whether the intimacy and communication that is central to high-quality palliative care will be compromised by the use of this technology. We employed a business model approach to identify the need for system innovation in palliative care, and a quality improvement approach to structure the project. Products from this project included a standard operating procedure for safe use of tablet computers for inpatient palliative care consultations and family visitations; tablet procurement with installation of video telehealth software; and training and education for clinical staff and other stakeholders. We describe a case illustrating the successful use of palliative care telehealth in the care of a COVID-19-positive patient at the end of life. Successful use of video telehealth for palliative care involved overcoming inertia to the development of telehealth infrastructure and learning clinical video telehealth skills; and engaging front-line care staff and family members who were open to a trial of telehealth for communication. Information gleaned from family about the patient as a person helped bedside staff to tailor care toward aspects meaningful to the patient and family and informed best practices to incorporate intimacy into future palliative video consultations and family visit.
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.
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.
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.