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.
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.
Au travers de six futurs fictionnels, construits par sous-détermination, des spécialistes de diverses disciplines s'interrogent sur le champ des possibles dans le domaine de la santé, par-delà les seuls aspects technologiques et organisationnels, ainsi que sur les enjeux éthiques que soulèvent ces perspectives.
BACKGROUND: In several studies, investigators have successfully used an internet-enabled PAINReportIt tablet to allow patients to report their pain to clinicians in real-time, but it is unknown how acceptable this technology is to patients and caregivers when used in their homes.
OBJECTIVE: The aims of this study were to examine computer use acceptability scores of patients with end-stage cancer in hospice and their caregivers and to compare the scores for differences by age, gender, race, and computer use experience.
INTERVENTION/METHODS: Immediately after using the tablet, 234 hospice patients and 231 caregivers independently completed the Computer Acceptability Scale (maximum scores of 14 for patients and 9 for caregivers).
RESULTS: The mean (SD) Computer Acceptability score was 12.2 (1.9) for patients and 8.5 (0.9) for caregivers. Computer Acceptability scores were significantly associated with age and with previous computer use for both patients and caregivers.
CONCLUSIONS: This technology was highly acceptable to patients and caregivers for reporting pain in real time to their hospice nurses.
IMPLICATIONS FOR PRACTICE: Findings provide encouraging results that are worthy of serious consideration for patients who are in end stages of illness, including older persons and those with minimal computer experience. Increasing availability of technology can provide innovative methods for improving care provided to patients facing significant cancer-related pain even at the end of life.
CONTEXT: Few randomized controlled trials of advance care planning with a decision aid (DA) show an effect on patient preferences for end-of-life (EOL) care over time, especially in racial/ethnic settings outside the United States.
OBJECTIVES: The objective of this study was to examine the effect of a decision aid consisting of a video and an advance care planning (ACP) booklet for end-of-life (EOL) care preferences among patients with advanced cancer.
METHODS: Using a computer-generated sequence, we randomly assigned (1:1) advanced cancer patients to a group that received a video and workbook that both discussed either ACP (intervention group) or cancer pain control (control group). At baseline, immediately post-intervention, and at 7 weeks, we evaluated the subjects' preferences. The primary outcome was preference for EOL care (active treatment, life-prolonging treatment, or hospice care) on the assumption of a fatal disease diagnosis and the expectation of death 1) within 1 year, 2) within several months, and 3) within a few weeks. We used Bonferroni correction methods for multiple comparisons with an adjusted p level of 0.005.
RESULTS: From August 2017 to February 2018, we screened 287 eligible patients, of whom 204 were enrolled to the intervention (104 patients) or the control (100 patients). At post-intervention, the intervention group showed a significant increase in preference for active treatment, life-prolonging treatment, and hospice care on the assumption of a fatal disease diagnosis and the expectation of death within 1 year (p<0.005). Assuming a life expectancy of several months, the change in preferences was significant for active treatment and hospice care (p<0.005) but not for life-prolonging treatment. The intervention group showed a significant increase in preference for active treatment, life-prolonging treatment, and hospice care on the assumption of a fatal disease diagnosis and the expectation of death within a few weeks (p<0.005). From baseline to 7 weeks, the decrease in preference in the intervention group was not significant for active treatment, for life-prolonging treatment, and for hospice care in the intervention group in the subset expecting to die within 1 year, compared with the control group. Assuming a life expectancy of several months and a few weeks, the change in preferences was not significant for active treatment and for life-prolonging treatment, but was significantly greater for hospice care in the intervention group (p<0.005).
CONCLUSION: ACP interventions that included a video and an accompanying book improved preferences for EOL care.
Pour aborder les diverses formes que peut prendre la mort dans les jeux vidéo comme un phénomène unitaire que, faute de disposer comme en allemand du neutre (das Tode, « ce qui est mort ») ou de pouvoir inventer un terme spécifique, nous nommerons simplement : la mort, nous retenons trois lignes de force qui sont autant de pistes de lecture. Nous les donnons ci-après en ordre croissant d’importance. Il faut, disons-nous, préciser le rôle des jeux vidéo en tant que spectacles mettant en scène ce phénomène. Leur existence est certes encore trop récente et leur évolution trop rapide pour qu’il soit possible d’établir à leur sujet un bilan définitif. Tout ce qui va suivre n’a donc qu’un caractère provisoire, voire hypothétique.
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BACKGROUND: Medical robots are increasingly used for a variety of applications in healthcare. Robots have mainly been used to support surgical procedures, and for a variety of assistive uses in dementia and elderly care. To date, there has been limited debate about the potential opportunities and risks of robotics in other areas of palliative, supportive and end-of-life care.
AIM: The objective of this article is to examine the possible future impact of medical robotics on palliative, supportive care and end-of-life care. Specifically, we will discuss the strengths, weaknesses, opportunities and threats (SWOT) of this technology.
METHODS: A SWOT analysis to understand the strengths, weaknesses, opportunities and threats of robotic technology in palliative and supportive care.
RESULTS: The opportunities of robotics in palliative, supportive and end-of-life care include a number of assistive, therapeutic, social and educational uses. However, there are a number of technical, societal, economic and ethical factors which need to be considered to ensure meaningful use of this technology in palliative care.
CONCLUSION: Robotics could have a number of potential applications in palliative, supportive and end-of-life care. Future work should evaluate the health-related, economic, societal and ethical implications of using this technology. There is a need for collaborative research to establish use-cases and inform policy, to ensure the appropriate use (or non-use) of robots for people with serious illness.