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.
Context: Implementation of pediatric palliative care as a primary practice relevant for all pediatricians and pediatric subspecialists requires a grounding, shared knowledge. This study reports on the innovative application of a monthly Palliative Care E-Journal Club (Pal Care Club) to foster shared palliative care knowledge hospital wide.
Objectives: To explore the impact of a monthly electronic journal club to increase the number of palliative care-relevant articles read and discussed and to enhance provider comfort with the integration and introduction of palliative care.
Methods: A single cohort, predesign–post-design was utilized to explore the impact of a monthly palliative care electronic journal club.
Results: Preintervention barriers to reading pediatric palliative care literature were primarily access and time. The mean of paired differences (post–pre) for the number of full-text articles read per month was 2.56 (SD = 1.25). The journal club intervention increased participant personal comfort with integrating palliative care principles at the bedside (p < 0.0001) and introducing pediatric palliative care to patients and families (p < 0.0001).
Conclusion: An electronic journal club is a feasible and acceptable means of increasing number of palliative care articles read and discussed across an institution as well as enhancing pediatric palliative care knowledge across subspecialist and general pediatric services.
With the increasing use of mobile devices (e.g., smart phones, tablets) in our everyday lives, people have the ability to communicate and share information faster than ever before. This has led to the development of promising applications aimed at improving health and healthcare delivery for those with limited access. Hospice care, which is commonly provided at home, may particularly benefit from the use of this technology platform. This commentary outlines several potential benefits and pitfalls of incorporating mobile health (mHealth) applications into existing home hospice care while highlighting some of the relevant telemedicine work being done in the palliative and End-of-Life care fields.
BackgroundTelephone consultation for patients and their relatives is a new aspect in the area of palliative care (PC). The centre for palliative care (CPC) in Dhaka, Bangladesh has been delivering a 24/7 telephone service since 2009.AimThe aim of the study is to describe this 24/7 PC telephone consultation service (TCS); the development and the use of the service and the challenges experienced by the physicians delivering the consultations.MethodsA descriptive mixed method study. Data on telephone consultations were collected from (CPC) from 2009 to 2016. Descriptive statistics were used to identify characteristics of patients, callers’ relationship to patients, reasons for calling, and suggestions/advice provided. A group interview with the consulting physicians was conducted and analysed to describe the development of the service and the challenges experienced.ResultsFrom December 2009 until August 2016, a total of 4195 calls were registered from palliative patients and their carers. The service was utilized most frequently by informal caregivers of patients (80%), pain was the most commonly recorded symptom (24%), and suggestions were mainly provided about general medicine (31%). The service providers are facing many challenges but they are motivated by the positive feedback from patients and carers and by the ability to at least do something.ConclusionThe TCS developed at CPC is a convenient way of delivering advice to palliative patients and their families in rural areas of Bangladesh, where the PC service is not available.
BACKGROUND: Continuity of care is important for palliative patients in their end of life. In the Netherlands, after-hours primary care for palliative patients is either provided by large-scale general practitioner (GP) cooperatives or GPs choose to give palliative care by themselves while they are not on duty.
AIM: To examine the availability of, perceived problems by, and attitude of Dutch GPs regarding providing palliative care for their own patients outside office hours.
DESIGN AND SETTING: Cross-sectional observational study among 1772 GPs from 10 Dutch regions.
METHOD: Online questionnaire among GPs affiliated with 10 GP cooperatives.
RESULTS: Five hundred twenty-four (29.6%) eligible questionnaires were returned. Of the GPs, 60.8% were personally available outside office hours for their own palliative patients on their own private cell phone and performed home visits if needed. In 33.0%, GPs were willing to make home visits in private time instigated by the GP cooperative and 26.8% were only accessible for telephone consultation by the GP cooperative. In 12.2%, the GP delegated after-hours palliative care completely to the GP cooperative. The GPs predominantly reported "time pressure" problems (17.3%) as a barrier and 61.7% stated that after-hours palliative care is the responsibility of the own GP.
CONCLUSION: The large majority of Dutch GPs is personally available for telephone consultation and/or willing to provide palliative care for their own patients outside office hours. For the future, it is important to maintain the willingness of GPs to remain personally available for their palliative patients.
BACKGROUND: The availability of smartphone applications has increased rapidly including applications related to palliative care. The scope of these available apps has not been synthesized.
OBJECTIVE: The purpose of this study was to identify and review available palliative care-related smartphone applications for clinicians.
DESIGN: Smartphone application platform stores, for example, App Store iOS, Google Play Store, Windows App-Microsoft Store, and Blackberry World App store were searched (December 2016) using relevant key words.
RESULTS: Forty-six palliative care applications targeting clinicians were identified, including clinical guidelines (n = 17), advance care planning (n = 9), training materials in palliative care (n = 7), and pharmaceutical tools (n = 7), and platforms for distributing current palliative care news, articles, and opinions (n = 6). The majority of the applications were free and available in English. The most common platforms were Android and iOS.
CONCLUSIONS: The number of palliative care apps targeting clinicians has increased dramatically for the past five years. However, many apps did not report adequate information to judge the evidence upon which the apps were based.
BACKGROUND AND PURPOSE: Palliative and hospice care (PHC) still mainly focuses on patients with cancer. In order to connect patients severely affected by multiple sclerosis (MS) and caregivers to PHC, a nationwide hotline was implemented to facilitate access to PHC.
METHODS: The hotline was designed in cooperation with the German Multiple Sclerosis Society. Self-disclosed information given by callers was documented using case-report forms supplemented by personal notes. Data were analysed descriptively.
RESULTS: A total of 222 calls were documented in 27 months. The patients' mean age was 51.12 years (range 27-84 years) and mean illness duration was 18 years (range 1 month to 50 years). Inquiries included information on PHC (28.8%) and access to PHC (due to previous refusal of PHC, 5.4%), general care for MS (36.1%), adequate housing (9.0%) and emotional support in crisis (4.5%). A total of 31.1% of callers reported 'typical' palliative symptoms (e.g. pain, 88.4%), 50.5% reported symptoms evolving from MS and 35.6% reported psychosocial problems. For 67 callers (30.2%), PHC services were recommended as indicated.
CONCLUSIONS: The hotline provided insight into the needs and problems of patients severely affected by MS and their caregivers, some of which may be met by PHC. Future follow-up calls will demonstrate if the hotline helped to improve access to PHC beyond providing information. Overall, the hotline seemed to be easily accessible for patients severely affected by MS whose mobility is limited.
BACKGROUND: Mobile health applications (mHealth apps) represent a rapidly emerging technology that is being used to improve health-care delivery. In home hospice, informal caregivers play an essential role in attending to the day-to-day needs of their terminally ill loved ones. Using mHealth apps by caregivers in this setting could potentially improve the support provided to both patients and caregivers at the end of life (EoL).
OBJECTIVES: To explore informal caregivers' receptivity and concerns in using mHealth apps along with app features, caregivers perceived to be most useful in home hospice care.
DESIGN: Eighty semistructured phone interviews were conducted with informal caregivers who received care from a nonprofit hospice organization. Study data were analyzed using content analysis, coding for themes of receptivity and interest.
RESULTS: Sixty-two (78%) participants were receptive to using an mHealth app in home hospice care. Informal caregivers were interested in features that addressed: (1) communication to improve patient care (n = 44, 70%), (2) access to patient care information (n = 30, 48%), (3) education (n = 24, 39%), and (4) updates from health-care personnel and scheduling services (n = 10, 16%).
CONCLUSIONS: A substantial majority of informal caregivers voiced receptivity to using mHealth apps and expressed interest in features that enhance communication and provide information to improve patient care. Although more research is needed to examine how to incorporate this technology into existing home hospice care, our study suggests that informal caregivers are likely to use this technology they feel will help enhance home-based EoL care delivery.
PURPOSE: Healthcare providers who are involved in the care of patients at the end of life are at risk of developing compassion fatigue, a condition characterized by emotional exhaustion and reduced professional engagement. Research has shown that development of a meditation practice can modify stress perceptions and promote quality of life. This study aimed to evaluate perceived benefits, challenges, and recommendations following participation in a workplace mobile application- and email-based meditation research program.
PARTICIPANTS & SETTING: 11 healthcare providers who participated in the feasibility pilot were recruited from Sparrow Health System in Lansing, Michigan.
METHODOLOGIC APPROACH: Three focus groups and one in-depth interview were conducted. Data were analyzed using qualitative methodology.
FINDINGS: Major themes included program advantages and limitations, challenges that affected adherence, and support for caregivers.
IMPLICATIONS FOR NURSING: Findings support further evaluation of a technology-mediated meditation program for professional caregivers to reduce perceived stress associated with the work environment.