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: Eliciting individual values and preferences of patients is essential to delivering high quality palliative care and ensuring patient-centered advance care planning. Despite advance care planning conserving healthcare costs by up to 36%, reducing psychological distress of patients and caregivers, and ensuring palliative care delivery in line with patient wishes, less than 33% of adults engage in it. We aimed to develop a mobile application intervention to address the challenges related to advance care planning and improve the delivery of palliative care.
METHODS: Design-thinking methodology was used to develop a mobile application, in response to issues prominently identified in current palliative care literature.
RESULTS: Issues surrounding communication of patient values from both the patient and provider side is identified as a main issue in palliative care. We designed a mobile application intervention prototype to address this.
CONCLUSIONS: Our "Mission Statement" mobile application will allow patients to create a mission statement identifying what they want their care team to know about them, as well as space to identify important values and preferences. Patients will be able to evolve their mission statement and values and preferences over the course of their palliative care journey through the application. Design-thinking methodology is an effective tool to drive healthcare innovation and bridge the gap between research findings and implementation.
Avec le confinement, les individus ont été tenus à distance physique les uns des autres et ont donc connu un isolement sans précédent, que cet isolement soit strictement individuel ou bien collectif. Chacun a donc été appelé à mobiliser ses propres capacités, ses propres ressources pour "tenir" dans un contexte d'isolement relatif et sans pouvoir se déplacer. Les professionnels en charge des personnes vulnérables ont largement utilisé les "technologies de la distance", comme le téléphone, pour maintenir les relations d'aide et de soin.
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.”
Mobile applications that facilitate each stage of the advance care planning process (i.e., obtaining knowledge, contemplating options, and acting on decisions) may be one effective way to support patient-centered care and patient autonomy. The purpose of the current review was to identify and evaluate advance care planning mobile applications for patients. Our specific aim was to examine app features, design quality, content, and readability. We searched the Apple iOS and Google Play stores using keywords developed in conjunction with an academic librarian. Two coders with expertise in palliative care applied guidelines from a previous review and used a consensus coding procedure. We also calculated a Flesh Reading Ease score for each app. Nine apps met criteria and could be evaluated. Overall, apps are limited in features and poor in terms of design quality, layout, and functionality. Regarding content, most apps emphasize making decisions or taking action about advance care planning: 6 apps permit users to document a preferred decision maker, and 6 apps offer a mechanism to distribute and share advance care planning documentation. Three apps focus on knowledge about advance care planning, and only 4 support contemplation about advance care planning. Apps range in terms of readability, from very difficult to fairly easy. This review identifies limitations in features, design quality, and content of existing advance care planning mobile apps. We present recommendations based on the results of this review for the development of future advance care planning apps.
The Coronavirus disease 2019 (COVID-19) pandemic has led to high numbers of critically ill and dying patients in need of expert management of dyspnea, delirium, and serious illness communication. The rapid spread of severe acute respiratory syndrome-Coronavirus-2 creates surges of infected patients requiring hospitalization and puts palliative care programs at risk of being overwhelmed by patients, families, and clinicians seeking help. In response to this unprecedented need for palliative care, our program sought to create a collection of palliative care resources for nonpalliative care clinicians. A workgroup of interdisciplinary palliative care clinicians developed the Palliative Care Toolkit, consisting of a detailed chapter in a COVID-19 online resource, a mobile and desktop Web application, one-page guides, pocket cards, and communication skills training videos. The suite of resources provides expert and evidence-based guidance on symptom management including dyspnea, pain, and delirium, as well as on serious illness communication, including conversations about goals of care, code status, and end of life. We also created a nurse resource hotline staffed by palliative care nurse practitioners and virtual office hours staffed by a palliative care attending physician. Since its development, the Toolkit has helped us disseminate best practices to nonpalliative care clinicians delivering primary palliative care, allowing our team to focus on the highest-need consults and increasing acceptance of palliative care across hospital settings.
INTRODUCTION: A high outpatient clinic no-show rate affects clinical outcomes, increases healthcare costs, and reduces both access to care and provider productivity. In an effort to reduce the no-show rate at a busy palliative medicine outpatient clinic, a quality improvement project was launched consisting of a telephone call made by clinic staff prior to appointments. The study aimed to determine the effect of this intervention on the no-show rate, and assess the financial impact of a decreased no-show rate.
METHODS AND MATERIALS: The outpatient clinic no-show rate was measured from September 1 to December 31, 2015. Data from the first 8 months of the calendar year was removed since these could not be verified. Starting January 1, 2016, patients received a telephone call reminder 24 hours prior to their scheduled outpatient appointment for confirmation. No-show rate was again measured for the calendar year 2016. Opportunity costs were calculated for unfulfilled clinic visits.
RESULTS: Of the 1224 completed visits from September 1 to December 31, 2015, 271 were no-shows with an average rate of 11.8%. After the intervention, there were 4368 completed visits and 562 no-shows. The no-show rate for 2016 averaged 6.9% (p < 0.001), down 4.9% from the last 4 months of 2015. Estimated opportunity costs were about 396 no-show visits avoided, equivalent to an annual savings of about $79,200.
CONCLUSION: A telephone call reminder to patients 24 hours prior to their appointment decreased the no-show rate in an outpatient palliative medicine clinic. Avoiding unfulfilled visits resulted in substantial opportunity costs.
BACKGROUND: A novel evidence-based Narrative e-Writing Intervention (NeW-I) has been developed and tested in Singapore to advance psychosociospiritual support for parents of children with chronic life-threatening illnesses. NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by literature on anticipatory grief interventions for improving the holistic well-being of parent caregivers of seriously ill children.
OBJECTIVE: This study's aim was to provide an accessible platform, NeW-I-which is a strengths- and meaning-focused and therapist-facilitated mobile app and web-based counseling platform-that aims to enhance quality of life, spiritual well-being, hope, and perceived social support and reduce depressive symptoms, caregiver burden, and risk of complicated grief among parents of children with chronic life-threatening illnesses.
METHODS: The NeW-I therapist-facilitated web-based platform comprises a mobile app and a website (both of which have the same content and functionality). NeW-I has been implemented in Singapore as a pilot open-label randomized controlled trial comprising intervention and control groups. Both primary and secondary outcomes will be self-reported by participants through questionnaires. In collaboration with leading pediatric palliative care providers in Singapore, the trial aims to enroll 36 participants in each group (N=72), so that when allowing for 30% attrition at follow-up, the sample size will be adequate to detect a small effect size of 0.2 in the primary outcome measure, with 90% power and two-sided significance level of at least .05. The potential effectiveness of NeW-I and the accessibility and feasibility of implementing and delivering the intervention will be assessed.
RESULTS: Funding support and institutional review board approval for this study have been secured. Data collection started in January 2019 and is ongoing.
CONCLUSIONS: NeW-I aspires to enhance holistic pediatric palliative care services through a structured web-based counseling platform that is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with expressing emotion even during times of loss and separation. The findings of this pilot study will inform the development of a full-scale NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.
Background: Through the British Columbia, Prospective Outcomes and Support Initiative (POSI), registered nurses collect patient-reported outcome (PRO) data during telephone follow-up with palliative oncology patients.
Objective : The research objective was to describe the usefulness and influence of the nursing care provided through POSI follow-up on palliative patients and health services.
Methods : We used a qualitative interpretive description approach involving the collection and analysis of semistructured interview data with 20 palliative patients and 12 oncology nurses. All participant data were subjected to an inductively derived coding framework. Analytic categories were identified and iteratively revised through constant comparative techniques to develop representative themes.
Results : The accounts of patients and nurses suggest that telephone follow-up with PROs enabled the nurses to (1) focus on the priorities of patients experiencing complex health challenges, (2) manage complex symptoms, (3) ease the patient’s transition home, and (4) improve access to and use of health services. Suggestions for improving POSI nurse follow-up centered on flexibility in the timing of the follow-up, creating dedicated POSI work assignments, and having additional time to personalize assessments and nursing care beyond the PRO questionnaires.
Conclusions : Nursing care employing PROs via telephone follow-up can improve palliative cancer patients’ quality of life and health service use.
Objective: Patients in the last year of life experience medical emergencies which may lead to an emergency attendance by ambulance clinicians and some patients having a transfer to hospital even when this is unwanted by patients, carers or professionals. Here we report the patient characteristics and outcomes of a 24-hour hospice nursing telephone advice service to support an ambulance service.
Method: An evaluation of the outcomes of ambulance calls to a nursing telephone advice service for people living in northwest London, UK, attended at home during a 6-month period by the London Ambulance Service, whose clinicians then sought advice from the hospice’s 24 hours’ telephone line.
Results: Forty-five attendances of 44 acutely ill people with palliative care needs resulted in a telephone call. Thirteen patients (30%) were male and the median age was over 80 years. Thirty-two attendances (71%) were managed without a transfer to hospital, with telephone advice from the hospice and in some cases arrangements for another clinician to visit. Seven attendances (16%) resulted in a transfer to hospital, of which at least five led to an admission. Six attendances (13%) resulted in a notification of the patient’s death.
Conclusions: This preliminary study shows the feasibility, outcomes and acceptability of telephone advice to support ambulance clinicians attending patients with palliative care needs. The service was associated with low rates of subsequent transfer to hospital. Further controlled research is needed to assess the clinical and cost-effectiveness of the service.
OBJECTIVE: To evaluate 'Gold Line', a 24/7, nurse-led telephone and video-consultation support service for patients thought to be in the last year of life in Bradford, Airedale, Wharfedale and Craven.
METHOD: Data on the time and nature of all calls between 1 April 2014 and 30 March 2015 were obtained from the patient Electronic Records. Interviews with 13 participants captured patients and carers perspectives.
RESULTS: To date, 3291 patients have been referred to the Gold Line. During the study period, 42% of registered patients had a non-cancer diagnosis and 45.2% of service users were not known to Specialist Palliative Care services. The median time on the caseload was 49 days (range 1-504 days). 4533 telephone calls and 573 video consultations were made involving 1813 individuals. 39% of the 5106 contacts were resolved by the Gold Line team without referral to other services. 69% of calls were made outside normal working hours. Interviews with patients and carers reported experiences of support and reassurance from the Gold Line and the importance of practical advice was emphasised. Current data (year to October 2015) show that 98.5% of calls (4500/4568) resulted in patients remaining in their place of residence.
CONCLUSIONS: A nurse led, 24/7 telephone and video consultation service can provide valuable support for patients identified to be in the last year of life and for their carers. The line enabled them to feel supported and remain in their place of residence, hence reducing the pressure for avoidable hospital admissions and use of other services. Providing this service may encourage healthcare professionals to identify more patients approaching the last year of life, widening support offered to this group of patients beyond those known to specialist palliative care services.
The law has a clear role to play in supporting patients and their substitute decision-makers (SDMs) to be involved in end-of-life (EOL) decision-making. Although existing literature suggests that knowledge of EOL law is variable among health professionals, there is little information about the extent and sources of such knowledge within the general community. A telephone survey of a representative sample of adults in three Australian States used six case scenarios to examine the extent to which adults know their legal duties, rights and powers as patients or SDMs; the sources from which people derive relevant legal knowledge; experiences of EOL decision-making; and individual characteristics associated with levels of knowledge. The results show considerable variation in levels of legal knowledge dependent primarily of the area of decision-making presented, some sizeable gaps in people's knowledge of EOL law, and varied awareness of how to access appropriate information on this subject. This study points to the need to increase community legal literacy around EOL decision-making, enhance awareness of the role of law in these circumstances and promote the availability of reliable and accessible information on the law at the time when it is needed.
BACKGROUND: Mobile health (mHealth) provides a unique modality for improving access to and awareness of palliative care among patients, families, and caregivers from diverse backgrounds. Some mHealth palliative care apps exist, both commercially available and established by academic researchers. However, the elements of family support and family caregiving tools offered by these early apps is unknown.
OBJECTIVE: The objective of this scoping review was to use social convoy theory to describe the inclusion and functionality of family, social relationships, and caregivers in palliative care mobile apps.
METHODS: Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review guidelines, a systematic search of palliative care mHealth included (1) research-based mobile apps identified from academic searches published between January 1, 2010, and March 31, 2019 and (2) commercially available apps for app stores in April 2019. Two reviewers independently assessed abstracts, app titles, and descriptions against the inclusion and exclusion criteria. Abstracted data covered app name, research team or developer, palliative care element, target audience, and features for family support and caregiving functionality as defined by social convoy theory.
RESULTS: Overall, 10 articles describing 9 individual research-based apps and 22 commercially available apps were identified. Commercially available apps were most commonly designed for both patients and social convoys, whereas the majority of research apps were designed for patient use only.
CONCLUSIONS: Results suggest there is an emerging presence of apps for patients and social convoys receiving palliative care; however, there are many needs for developers and researchers to address in the future. Although palliative care mHealth is a growing field, additional research is needed for apps that embrace a team approach to information sharing, target family- and caregiver-specific issues, promote access to palliative care, and are comprehensive of palliative needs.
OBJECTIVES: To examine the effect of mode of survey administration on response rates and response tendencies for the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey and develop appropriate adjustments.
DESIGN: Survey response data were obtained after sampling and fielding of the CAHPS Hospice Survey in 2015. Sampled caregivers and decedents were randomized to one of three modes: mail only, telephone only, and mixed mode (mail with telephone follow-up). Linear regression analysis was used to examine the effect of mode on individual responses to questions (6 composite measures and 2 global measures that examine hospice quality).
SETTING: U.S. hospice programs (N = 57).
PARTICIPANTS: Primary caregivers of individuals who died in hospice (N = 7,349).
MEASUREMENTS: Outcomes were 8 hospice quality measures (6 composite measures, 2 global measures). Analyses were adjusted for differences in case-mix (e.g., decedent age, payer for hospice care, primary diagnosis, length of final episode of hospice care, respondent age, respondent education, relationship of decedent to caregiver, survey language, and language spoken at home) between hospices.
RESULTS: Response rates were 42.6% for those randomized to mail only, 37.9%, for those randomized to telephone only, and 52.6% for those randomized to mixed mode (P < .001 for difference). There were significant mode effects (P < .05) for 10 of the 24 questions that compose the quality measures, with mail-only respondents being significantly more likely to report better experiences than telephone-only respondents.
CONCLUSION: Unlike results observed in previous mode experiments for hospital CAHPS, hospice primary caregivers tend to respond more negatively by telephone than by mail. Valid comparisons of hospice performance require that reported hospice scores be adjusted for survey mode.
Introduction: Emergency department (ED)-initiated palliative care has been shown to improve patient-centred outcomes in older adults with serious, life-limiting illnesses. However, the optimal modality for providing such interventions is unknown. This study aims to compare nurse-led telephonic case management to specialty outpatient palliative care for older adults with serious, life-limiting illness on: (1) quality of life in patients; (2) healthcare utilisation; (3) loneliness and symptom burden and (4) caregiver strain, caregiver quality of life and bereavement.
Methods and analysis: This is a protocol for a pragmatic, multicentre, parallel, two-arm randomised controlled trial in ED patients comparing two established models of palliative care: nurse-led telephonic case management and specialty, outpatient palliative care. We will enrol 1350 patients aged 50+ years and 675 of their caregivers across nine EDs. Eligible patients: (1) have advanced cancer (metastatic solid tumour) or end-stage organ failure (New York Heart Association class III or IV heart failure, end-stage renal disease with glomerular filtration rate <15 mL/min/m2, or global initiative for chronic obstructive lung disease stage III, IV or oxygen-dependent chronic obstructive pulmonary disease); (2) speak English; (3) are scheduled for ED discharge or observation status; (4) reside locally; (5) have a working telephone and (6) are insured. Patients will be excluded if they: (1) have dementia; (2) have received hospice care or two or more palliative care visits in the last 6 months or (3) reside in a long-term care facility. We will use patient-level block randomisation, stratified by ED site and disease. Effectiveness will be compared by measuring the impact of each intervention on the specified outcomes. The primary outcome will measure change in patient quality of life.
Ethics and dissemination Institutional Review Board approval was obtained at all study sites. Trial results will be submitted for publication in a peer-reviewed journal.
BACKGROUND: The community prevalence of advance care directives (ACDs) is low despite known benefits of advance care planning for patients, families and health professionals.
AIM: To determine the community prevalence of instructional and appointing ACDs in New South Wales, Victoria and Queensland and factors associated with completion of these documents.
METHODS: A telephone survey of adults living in New South Wales, Victoria and Queensland (n=1175) about completion of instructional ACDs (making their own decisions about future health care) and appointing ACDs (appointing another to decide). Quota sampling occurred based on population size by state, gender and age, with oversampling in smaller jurisdictions (Victoria and Queensland).
RESULTS: Overall response rate was 33%. Six per cent of respondents reported completing an instructional ACD while 12% reported completing an appointing ACD. Female gender, higher educational level, personal experience of a major health scare and being widowed were significant predictors of completing an instructional ACD. Older age, higher educational level and being widowed were significant predictors of completing an appointing ACD.
CONCLUSIONS: Despite long-standing efforts to increase advance care planning, community prevalence of ACDs remains low, particularly for instructional ACDs. This study found some different predictors for instructional ACDs compared with appointing ACDs, and also a potential role for experiential factors in triggering uptake. These findings suggest supplementing general community awareness campaigns with more nuanced and targeted efforts to improve ACD completion.
Mobile and social media have progressively become vessels for manifesting death and dying in our everyday lives. This article investigates the visual nature of social mobile media as “affective witnessing” by analyzing mobile media use during the 12th June 2016 Orlando Pulse Nightclub shooting in Orlando Florida (USA). How mobile media serve as witnesses and companions in this tragedy is demonstrated through analyzing first-person accounts, police body cam footage, 911 transcripts and online social media posts. This analysis reveals how mobile communication complicates situational awareness during mass trauma while also playing an important role in processing loss.
BACKGROUND: Mobile health (mHealth) technology holds promise for promoting health education and reducing health disparities and inequalities in underserved populations. However, little research has been done to develop mHealth interventions for family caregivers of people with dementia, particularly those in rural Hispanic communities, who often serve as surrogate decision makers for their relatives with dementia.
OBJECTIVE: As part of a larger project to develop and test a novel, affordable, and easy-to-use mHealth intervention to deliver individually tailored materials in rural Hispanic communities, in this pilot study, we aimed to examine (1) characteristics of people with dementia and their family caregivers in rural Hispanic communities, (2) caregivers' preferences for types and amounts of health information and participation in surrogate decision making, and (3) caregivers' mobile device usage and their desire for receiving information via mobile devices.
METHODS: This was a cross-sectional survey. A convenience sample of 50 caregivers of people with dementia was recruited from rural health care facilities in Southwest Texas during 3 weeks of April 2017 to May 2017 via word-of-mouth and flyers posted at the facilities.
RESULTS: More women than men were in the patient group ( 21=17.2, P<.001) and in the caregiver group ( 21=22.2, P<.001). More patients were on Medicare and Medicaid; more caregivers had private insurance (P<.001 in all cases). Overall, 42% of patients did not have a power of attorney for their health care; 40% did not have a living will or advance directive. Caregivers were interested in receiving all types of information and participating in all types of decisions, although on subscales for diagnosis, treatment, laboratory tests, self-care, and complementary and alternative medicine, their levels of interest for decision-making participation were significantly lower than those for receiving information. On the psychosocial subscale, caregivers’ desire was greater for surrogate decision-making participation than for information. Caregivers did not differ in their interests in information and participation in decision making on the health care provider subscale. All but 1 caregiver (98%) owned a mobile phone and 84% had a smartphone. Two-thirds wanted to receive at least a little dementia-related information via a smartphone or tablet. The amount of dementia-related information caregivers wanted to receive via a mobile device was significantly greater for women than for men (U=84.50, P=.029). Caregivers who owned a tablet were more likely to want to receive dementia-related information via a mobile device than those who did not own a tablet (U=152.0, P=.006).
CONCLUSIONS: Caregivers in rural Hispanic communities were interested in receiving a wide range of information as well as participating in making decisions for their relatives with dementia. There is much need for effective mHealth interventions that can provide information tailored to the needs and preferences of these caregivers.
Mobile devices frequently used in other specialties can find great utility in palliative care. For healthcare professionals, the use of mobile technology not only can bring additional resources to the care, but it can actually radically change the cancer remote care practices. The Brazilian National Cancer Institute (INCA) has developed the largest cancer home care program in Latin America, which currently benefits more than 500 patients. The purpose of this paper is to show the development of an ICT environment of mobile applications developed to support the palliative cancer care program at INCA.
BACKGROUND: The primary charge of Emergency Medical Services (EMS) is to save lives. However, EMS personnel are frequently called to scenes where prolonging life may not be the primary goal. When someone is nearing death, family members may feel compelled to call 911 because they are feeling uncertain about how to manage symptoms at the end of life.
OBJECTIVE: We sought to explore prehospital providers' perspectives on how the awareness of dying and documentation of end-of-life wishes influence decision-making on emergency calls near the end of life.
METHODS: The study design was exploratory, descriptive and cross-sectional. Qualitative methods were chosen to explore participants' perspectives in their own words. In-depth in-person interviews were conducted with 43 EMS providers. Interviews were audio recorded and professionally transcribed. Interview transcripts were entered in Atlas.ti for data management and coding. The analysis was deductive and guided by a conceptual model of 4 contexts of end-of-life decision-making that is not setting-specific, but has been applied to prehospital care in this study.
RESULTS: The findings illustrate the relationship between awareness of dying and documentation of wishes in EMS calls. The four decisional contexts are: (1) Awareness of Dying-Wishes Documented: Families were prepared but validation and/or support was needed in the moment; (2) Awareness of Dying-Wishes Undocumented: EMS must initiate treatment, medical control guidance was needed; (3) Unaware of Dying-Wishes Documented: Shock, expectation that EMS can stop the dying; (4) Unaware of Dying-Wishes Undocumented: Families were unprepared, uncertain, frantic. Each context is illustrated by representative quotes from participants. Discordance and conflict was found in each decisional context.
CONCLUSIONS: This study illustrates that EMS providers are acutely aware of the impact of their decisions and actions on families at the end of life. How emergency calls near the end of life are handled influences how people die, whether their preferences are honored and the appropriate use of ambulance transport and ED care. The findings highlight how the intersection of awareness of dying and documentation of wishes influence prehospital decision-making in end-of-life emergencies and demonstrate the key role EMS providers have in this critical period.