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.
While the additional value from adding the option of virtual visits is not in question, numerous issues are raised around how to decide between face-to-face and virtual visits in individual cases and how best to set up such provision within an organisation. With only limited palliative care-specific literature and no time to set up and evaluate pilots, we had to get on and set up a prototype 'virtual visits' model, retro-fitting guidance and a supporting ethical framework. We looked at the issues spanning clinical, ethical and logistics domains; identifying areas of benefit as well as drawbacks, some specific to the rushed implementation because of COVID-19's infective risks and the 'rules' of lockdown, but many are generic areas to help guide longer term service design. Unsurprisingly, it appears clear that a 'one-size-fits-all' mentality is a poor fit for the individualised needs of the heterogeneous palliative care population. Virtual visits have great potential even if they are not a panacea.
Importance: Despite requirements of informed consent, patients with advanced cancer often receive palliative chemotherapy (PC) without understanding that the likelihood of cure is remote.
Objective: To determine whether a PC educational video and booklet at treatment initiation could improve patients’ understanding of its benefits and risks.
Interventions: Regimen-specific PC videos and booklets presenting information about logistics, potential benefits, life expectancy (optional), adverse effects, and alternatives. Videos featured authentic patients sharing diverse experiences. After receiving treatment recommendations, research assistants distributed materials to patients for independent review.
Design, Setting, and Participants: Multicenter randomized clinical trial of patients with advanced colorectal or pancreatic cancer starting first-line or second-line PC in 5 US cancer centers with enrollment from June 2015 to September 2017 and follow-up to December 2019.
Main Outcomes and Measures: The primary outcome was accurate expectations of chemotherapy benefits at 3 months, defined as responding “not at all likely” to “What is your understanding of how likely the chemotherapy is to cure your cancer?” (from the Cancer Care Outcomes Research and Surveillance study). Secondary outcomes included understanding of adverse effects, decisional conflict (SURE test), regret (Decisional Regret Scale), and distress (Functional Assessment of Cancer Therapy–General emotional well-being subscale).
Results: Among 186 patients with advanced colorectal or pancreatic cancer who were starting first-line or second-line PC (94 randomized to usual care, 92 to intervention; mean [SD] age, 59.3 [12.6] [range, 28-86] years; 107 [58%] male; 118 [63.4%] colorectal and 68 [36.6%] pancreatic cancer), most patients wanted “a lot” of information or “as much information as possible” about adverse effects (149, 80.1%), likelihood of cure (148, 79.6%), and prognosis (148, 79.6%). Among the intervention arm, 59 (78%) reviewed the booklet and 30 (40%) reviewed the video within 2 weeks. The primary outcome did not differ between intervention and control arms (52.6%; 95% CI, 40.3%-65.0%; vs 55.5%; 95% CI, 45.1%-66.0%). Accurate adverse effect understanding was more common among intervention than control patients (56.0%; 95% CI, 44.3%-67.7%; vs 40.2%; 95% CI, 29.5%-50.9%; P = .05), although this did not meet the threshold for statistical significance. The intervention did not increase distress, despite frank prognostic information. Other secondary outcomes were similar.
Conclusions and Relevance: Provision of an educational video and booklet did not alter patients’ expectation of cure from PC. Alternative delivery strategies, such as integration with nurse teaching, could be explored in future studies.
BACKGROUND: Digital tools to document care preferences in serious illnesses are increasingly common, but their impact is unknown. We developed a web-based advance directive (AD) featuring (1) modular content eliciting detailed care preferences, (2) the ability to electronically transmit ADs to the electronic health record (EHR), and (3) use of nudges to promote document transmission and sharing.
OBJECTIVE: To compare a web-based, EHR-transmissible AD to a paper AD.
METHODS: Patients with gastrointestinal and lung malignancies were randomized to the web or paper AD. The primary outcome was the proportion of patients with newly documented advance care plans in the EHR at 8 weeks. Secondary outcomes assessed through an e-mail survey included the change in satisfaction with end-of-life plans, AD acceptability, and self-reported sharing with a surrogate.
RESULTS: Ninety-one participants were enrolled: 46 randomly allocated to the web AD and 45 to paper. Thirteen patients assigned to web AD (28%) had new documentation versus 7 (16%) assigned to paper (P = .14). Adjusted for demographic factors and primary diagnosis, the odds ratio of new documentation with web AD was 3.7 (95% CI: 0.8-17.0, P = .10). Satisfaction with advance care planning and AD acceptability were high in both groups and not significantly different. Among patients completing web ADs, 79% reported sharing plans with their caregivers, compared with 65% of those completing paper ADs (P = .40).
CONCLUSION: Web-based ADs hold promise for promoting documentation and sharing of preferences, but larger studies are needed to quantify effects on these intermediate end points and on patient-centered outcomes.
Patient portals can play an innovative role in facilitating advanced care planning (ACP) and documenting advance directives (ADs) among older adults with multiple chronic conditions. The objective of this qualitative sub-study was to (1) understand older adults’ use of an ACP patient portal section and (2) obtain user-design input on AD documentation features. Although some older adults may be reluctant, participants reported likely to use a portal for ADs with proper portal design and support.
In light of the COVID-19 pandemic, many healthcare systems are experiencing an increased demand for palliative care (PC). To meet this challenge, the PC team at Cleveland Clinic designed an enterprise-wide response plan organized around 4 domains: staff (educational resources and tools), stuff (medications and supplies), space (recommendations for optimizing physical space and facilities), and systems to facilitate high-quality PC delivery to patients. To mitigate isolation during end-of-life care, the Clinic offers “compassionate exceptions” to strict visitation policies, provides personal protective equipment to visitors of these patients, and facilitates virtual visitation via electronic devices.
In this personal reflection, as a Family Medicine resident at an Academic Center in Northeast Florida, as well as being a chronic illness patient myself, I explore the notion of dying alone and away from family. Although COVID-19 has changed the practice of medicine in many ways, prior to that, and before the instillation of hospital no-visitor policies and stay at home orders, I experienced a case of a patient dying alone in the hospital. These chronicles that case and the impact it had on me afterward in regard to my own family and how I hope the future of medicine can address this.
INTRODUCTION: An electronic resuscitation system, implemented in 2015, within electronic patient records (EPR) at King's College Hospital NHS Foundation Trust was studied, aiming to review and improve decision documentation and communication.
METHOD: The study (January 2018 - June 2018) included all gerontology inpatients with electronic do not attempt cardiopulmonary resuscitation (e-DNACPR) decisions. Cases were identified weekly, followed by retrospective analysis of discharges. Amendments to the electronic system and improvements were implemented between cycles. CYCLE 1: One-hundred and thirty-three patients were included; 85% had an e-DNACPR form; 86% of all forms had senior doctor involvement; 68% evidenced patient/relative discussion; 13% documented multidisciplinary team (MDT) discussion.
INTERVENTIONS: A mandatory 'named nurse' field was added to the form and trust-wide education programme implemented. CYCLE 2: One-hundred and twenty-six patients were included; 100% had an e-DNACPR form; 93% evidenced senior doctor involvement; 71% evidenced patient/relative discussion; 57% documented MDT discussion.
CONCLUSION: Changes to the process and trust-wide education resulted in more robust documentation and communication.
This case report describes a pediatric hospice provider in Scotland and their experience implementing a telehospice program in response to COVID-19. Children's Hospices Across Scotland (CHAS) is the only provider of pediatric hospice care in the entire of Scotland, and we describe their experience offering pediatric telehospice. CHAS had strategically planned to implement telehospice, but COVID-19 accelerated the process. The organization evaluated its pediatric clinical and wrap-around hospice services and rapidly migrated them to a virtual environment. They creatively added new services to meet the unique needs of the entire family, who were caring for a child at end of life during COVID-19. CHAS's experience highlights the planning and implementing processes of telehospice with key lessons learned, while acknowledging the challenges inherent in using technology to deliver hospice care.
The complexities surrounding the dying process may distort rational decision-making and impact care at the end of life. Advance care planning, which focuses on identifying the individual's definition of quality of life, holds great potential to provide clarity at the end of life. Currently, young adults are not the intended audience for advance care planning. A quality improvement project engaged 36 college-age adults in structured group advance care planning discussions and evaluated the perceived value of a self-recorded advance directive. Findings from a pre- and postintervention survey suggested that young adults welcomed a conversation about end-of-life care; they wished for more information and expressed that a video-recorded advance directive stimulated thoughts about their own definition of quality of life. Participants' improved self-perception of comfort, confidence, certainty, and knowledge regarding the advance care planning process and end-of-life care indicated young adults may be a willing and eager population for the expansion of advance care planning. In addition to directing advance care planning to a younger audience, a personal video-recorded advance directive may complement the current advance care planning process and aid individuals in defining their quality of life.
BACKGROUND: There is evidence that psychosocial and spiritual interventions of short duration, such as reminiscence therapy, provide positive impacts on quality of life and emotional and existential well-being in adults receiving palliative care.
AIM: To determine (1) the feasibility of integrating 'LIFEView', a video-based software with >1600 videos of world destinations, in palliative care settings, and (2) positive, neutral or harmful effects of using 'LIFEView' videos.
DESIGN: A mixed-methods pre-post intervention pilot study was conducted to collect feasibility and preliminary data on physical and psychological symptoms, physiological indicators, spiritual well-being and aspects of quality of life.
SETTING/PARTICIPANTS: Adult patients on an inpatient palliative care unit or receiving care from a community palliative care consultation team who were capable of providing consent and completing the outcome measures were eligible participants.
RESULTS: Overall, 27/41 (66%) participants took part in the study. Feasibility criteria, including participant acceptability, low participant burden, tool completion rate and retention rate, were fulfilled, though challenges were experienced with recruitment. Modest improvements, though non-significant, were shown on preliminary data collected on physical and psychological symptoms using the Edmonton Symptom Assessment System-revised, spiritual well-being assessed by the 12-item Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being scale and physiological measurements. Qualitative analysis revealed five themes: motivations for using 'LIFEView', perceptions of the technology, reminiscence, 'LIFEView' as an adaptable technology and ongoing or future use.
CONCLUSION: A future adequately powered study to investigate the impacts of 'LIFEView' on patient well-being and quality of life appears to be feasible.
The Novel Coronavirus SARS-CoV-2 (COVID-19) pandemic is changing how we deliver expert palliative care. We can expect many to die prematurely secondary to COVID-19 across the United States. We present a case of how several hospital systems-based interventions, intended to slow viral spread and to protect health care workers, have inadvertently created barriers to routine palliative interventions in this patient population. Isolation of patients, limitation of visitors and interdisciplinary support, and changes in nursing and provider assessment have all had their impact on how we deliver palliative care. These barriers have altered many aspects of our established workflow and algorithms for care, including changes in communication, goals of care discussions, how providers and nurses are monitoring for symptoms, and end-of-life monitoring. These challenges required real-time solutions such as technology utilization, proposing a change in medical delivery systems, and reducing redundancy to preserve personal protective equipment. To continue to deliver quality care for this patient population, palliative medicine must adapt quickly.
After covid-19 crisis in Italy, serious restrictions have been introduced for relatives, with limitations or prohibitions on hospital visits. To partially overcome these issues "WhatsApp" has been adopted to get family members to participate in clinical rounds. Family members of patients admitted to the acute palliative care unit and hospice were screened for a period of 2 weeks. Four formal questions were posed: 1) Are you happy to virtually attend the clinical round? 2) Are you happy with the information gained in this occasion? 3) Do you think that your loved one was happy to see you during the clinical rounds? 4) This technology may substitute your presence during the clinical rounds? The scores were 0=no, 1=a little bit, 2=much, 3=very much. Relatives were free to comment about these points. Sixteen of 25 screened family members were interviewed. Most family members had a good impression, providing scores of 2 or 3 for the first three items. However, the real presence bedside (forth question) was considered irreplaceable. They perceived that their loved one, when admitted to hospice, had to say good-bye before dying.
Palliative and hospice care services produce immense benefits for patients living with serious illness and for their families. Due to the national shift toward value-based payment models, health systems and payers share a heightened awareness of the need to incorporate palliative and hospice services into their service mix for seriously ill patient populations. During the last decade, a tremendous amount of capital has been invested to better integrate information technology into healthcare. This includes development of technologies to promote utilization of palliative and hospice services. However, no coordinated strategy exists to link such efforts together to create a cohesive strategy that transitions from identification of patients through receipt of services. A Serious Illness Digital Ecosystem (SIDE) is the intentional aggregation of disparate digital and mobile health technologies into a single system that connects all of the actors involved in serious illness patient care. A SIDE leverages deployed health technologies across disease continuums and geographic locations of care to facilitate the flow of information among patients, providers, health systems, and payers. Five pillars constitute a SIDE, and each one is critical to the success of the system. The 5 pillars of a SIDE are: Identification, Education, Engagement, Service Delivery, and Remote Monitoring. As information technology continues to evolve and becomes a part of the care delivery landscape, it is necessary to develop cohesive ecosystems that inform all parts of the serious illness patient experience and identifies patients for the right services, at the right time.
Dr. Wakam: I’m 5 hours into my ICU shift at a community hospital in Detroit when the results of another arterial blood gas return. My patient has been hospitalized for 3 days and is Covid-19–positive. Over the past 12 hours, his treatment has progressed from intubation, to prone positioning on 100% fractional inspired oxygen, to medically induced paralysis, and finally to bilevel ventilation. The results from the arterial blood gas are dismal: pH 7.19, pCO2 70.1, pO2 63.7, HCO3 26.0. He has already experienced episodes of profound hypoxia when we try to rotate him into a supine position, and his heart has begun to show signs of strain, with periods of atrial fibrillation with rapid ventricular response and nonsustained runs of ventricular tachycardia. A request to transfer the patient for extracorporeal membrane oxygenation (ECMO) is denied. It’s 11 p.m., and I’m worried that my patient won’t survive until morning.
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L'ancien ministre de la Santé propose une réflexion sur l'avenir de la médecine et notamment l'impact de l'intelligence artificielle, de la biotechnologie, des neurosciences, des capteurs connectés ou des impressions de tissus en 3D.
Les connaissances anciennes et nouvelles de la notion d'éternité sont regroupées dans cette BD très concise et très claire permettant de comprendre la recherche actuelle et les enjeux philosophiques des choix de recherche par rapport à la mort.
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.
This special issue entitled “Futures of Digital Death: Mobilities of Loss and Commemoration” explores the topic of digital death and how technologies are reconfigured by and reconfiguring social relationships with the deceased and dying loved ones as well as the larger ecosystem supporting such relationships. This Introduction article starts with an overview of the past research on digital death intended to provide a relevant context for the five papers included in this issue. Then, we reflect on how the current papers, or the present research, build on the past and can be used to address existing gaps and to inform future new research directions in order to move the field forward.
Objectives: To describe the current evidence of studies examining the use of information technology for family caregivers of persons with cancer. We highlight emerging technologies and trends and discuss ethical and practical implications.
Data Sources: Review scientific studies and systematic reviews of technology use to support caregivers of persons with cancer.
Conclusion: The evidence base is growing; however, more studies are needed to test the effectiveness of technology.
Implications for Nursing Practice: Several tools have potential to provide support to family caregivers but the selection of such tools needs to address access, privacy, interoperability, and usability considerations.