The COVID-19 pandemic created a global health emergency that has changed the practice of medicine and has shown the need for palliative care as an essential element of hospital care. In our small South Florida hospital, a palliative care service was created to support the frontline caregivers. Thanks to the hospital support, our team was formed rapidly. It consisted of 3 advanced care practitioners, a pulmonary physician with palliative care experience and the cooperation of community resources such as hospice and religious support. We were able to support patients and their families facilitating communication as visitation was not allowed. We also addressed goals of care, providing comfort care transition when appropriate, and facilitating allocation of scarce resources to patients who were most likely to benefit from them. With this article we describe a simplified framework to replicate the creation of a Palliative Care Team for other hospitals that are experiencing this need.
BACKGROUND: Conversations about death are often associated with fear, anxiety, avoidance and misunderstandings. Many adults feel that these discussions are inappropriate and confusing for young people. In this project, two fourth-year nursing students partnered with a local palliative care team to examine death education for children. The nursing students focused on children's understandings of death and their coping abilities, the lack of appropriate discussions about death with children, and the implementation of death education in public schools. Three online death education resources were identified and evaluated for use in public schools. This project fueled preliminary local discussions and advocacy efforts in the provision of death education for children. In the future, death education will need to be incorporated into education plans at local schools, and could be done in collaboration with the local palliative care team.
Palliative care is an evolving field with extensive studies demonstrating its benefits to patients, families, and the health care system. Many health systems have developed or are developing palliative care programs. The Canadian Society of Palliative Care Physicians (CSPCP) is often asked to recommend how many palliative care specialists are needed to implement and support an integrated palliative care program. This information would allow health service decision makers and educational institutions to plan resources accordingly to manage the needs of their communities. The CSPCP is well positioned to answer this question, as many of its members are Directors of palliative care programs and have been responsible for creating and overseeing the pioneering work of building these programs over the past few decades. In 2017, the CSPCP commissioned a working group to develop a staffing model for specialist palliative care teams based on the interdependence of three key professional roles, an extensive literature search, key stakeholder interviews, and expert opinions. This article is the Canadian Society of Palliative Care's recommended starting point that will be further evaluated as it is utilized across Canada.
For more information and to see sample calculations go to the Canadian Society of Palliative Care Physicians Staffing Model for Palliative Care Programs (https://www.cspcp.ca).
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty.
Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role.
Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child.
Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
Over 140,000 people in the United States have died as a result of infection with COVID-19. These patients have varying death experiences based on their location of death, the availability and utilization of various medical technologies, the amount of strain on the local health care system, the involvement of specialist palliative care (PC) teams, and access to essential medications to alleviate symptoms at the end of life. The objective of this report is to describe the death experiences of four patients cared for in an urban academic medical center who received very different degrees of medical interventions and to examine the interventions of our interdisciplinary PC team. We conclude that PC teams must adapt to this new landscape by creating best practices for ensuring adequate symptom control, modifying approaches for withdrawal of life-sustaining medical technologies, and gaining facility with communication through teleconferencing platforms to meet the challenge of alleviating suffering for people dying from COVID-19.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
OBJECTIVE: The COVID-19 pandemic is a care crisis of unknown duration which has seemingly not yet reached its peak in many countries. A significant number of elderly and frail people and those with underlying serious illness will continue to develop severe forms of the COVID-19 infection. Most of them are not eligible for intensive care treatment but can still expect palliative care - in many cases provided by a Hospital Palliative Care Team (HPCT). Several teams have already gained experience in caring for these patients and their families, others are preparing for it.
METHOD: We report on a COVID-19 patient with pre-existing acute myeloid leukemia who was looked after by a HPCT until death. We discuss the challenges and difficulties while caring for COVID-19-positive palliative patients in a non-ICU setting.
RESULTS: Hospitalization of the patient in an isolation ward caused an enormous burden for the dying patient and his family. Symptom control was particularly difficult because of rapid deteriorating dyspnea and the scarce presence of medical staff in the patient's room.
SIGNIFICANCE OF RESULTS: COVID-19 patients who are not eligible for ICU treatment may have a particularly high need for palliative care. Since beds in specialist palliative care units are limited, the HPCT should be prepared to care for these patients. They may offer support in decision-making, optimize symptom control, and provide psychosocial care for patients and their families. Visiting restrictions aimed to protect the general public must be weighted against the patient's and family's suffering.
During the novel coronavirus disease 2019 (COVID-19) pandemic, it is particularly critical to ensure that life-sustaining treatment (LST) such as intubation and resource-intensive cardiopulmonary resuscitation (CPR) are aligned with a patient’s goals and values, and to avoid LSTs in patients with a poor prognosis that are unlikely to be beneficial, but have a high risk of causing additional suffering. The high volume and acuity of COVID-19 patients makes it extremely challenging for emergency department (ED) clinicians to take adequate time to clarify goals of care (GOC). We implemented an ED-based COVID-19 palliative care response team focused on providing high-quality GOC conversations in time-critical situations. We examined the clinical characteristics and outcomes of patients who received this intervention.
Methods: This retrospective observational study was conducted in the ED of an urban, quaternary care academic medical center in New York, New York. We included 110 patients for whom the palliative care team was consulted between March 27, 2020, and April 10, 2020, with follow-up through May 9, 2020. Columbia University institutional review board approved this study and waived the need for informed consent.
Emergency department clinicians consulted the palliative care team for assistance with any palliative care-related needs, including GOC clarification and cases where stated GOC did not align with expected prognosis. The palliative care team (1 attending physician who was board-certified in hospice and palliative medicine, 1 hospice/palliative medicine fellow clinician, and 4 psychiatry resident physicians and fellow clinicians, all trained in GOC conversations and supervised by the palliative care attending physician) was available in person 12 hours per day, and for phone consultation overnight and on weekends. The palliative care intervention focused on GOC conversations: conveying the prognosis in a clear and simple way, exploring patients’ goals and values, and making care recommendations based on elicited goals.1,2
Deidentified demographic data were collected from the medical record. Primary outcomes included GOC before and after palliative care intervention, as well as GOC on death or discharge. Secondary outcomes included clinical course and length of stay in the hospital
Goals of care were defined as “full code” (pursue all LSTs including intubation and CPR); “do-not-resuscitate (DNR) only” (pursue all LSTs excluding CPR); “DNR/do-not-intubate (DNI), continue medical treatment” (pursue all LSTs excluding intubation and CPR); and “comfort-directed care” (forgo LSTs, deliver symptom-focused treatment only). The GOC were presumed to be full code if no advance directives or medical orders for life-sustaining treatment (MOLST) were found on presentation to the ED.
Six patients were still hospitalized at the time of data review; they were excluded from the analysis for clinical course.
Results: The 110 patients were aged a median (range) of 81.5 (46-101) years and 61 (55.4%) were women. Patient demographic and clinical characteristics are reported in Table 1. Most patients were community-dwelling elderly persons (aged >75 years) with at least 2 comorbidities and lacked decision-making capacity at the time of presentation. Very few patients presented with documented advance directives or MOLST and therefore were presumed to be full code.
The primary outcomes are summarized in Table 2. After initial palliative care intervention, the number of full code decreased from 91 patients (82.7%) to 20 patients (18.2%). Among these 71 patients (64.5%) in whom CPR was declined, mechanical ventilation was also declined in 61 patients (55.5%) (ie, 32 patients in DNR/DNI, continue medical treatment, 29 patients in comfort-directed care). On discharge, the number of full code further decreased to 9 patients (8.6%), whereas comfort-directed care increased to 54 patients (51.9%). The median (range) length of stay was 4 (0-28) days and 71 patients (68.2%) died in the hospital. Among 33 patients (31.7%) who were discharged alive, 6 patients (5.8%) were discharged with hospice care.
Discussion: The included patients’ demographic characteristics were consistent with those of critically ill patients with COVID-19 previously reported and with those of patients reported to be at highest risk of death from COVID-19. Patients without advance care planning conversations are known to be at risk of receiving unwanted, high-intensity, lower-quality care,5 even though many seriously ill patients do not prefer LSTs at the end of life.6
The most important finding in this study was, after palliative care intervention in the ED, most patients and their surrogates opted to forgo mechanical ventilation and/or CPR, and that tendency further increased on discharge. We believe timely GOC conversations by the palliative care team helped avoid unwanted LSTs for patients with a poor prognosis. Study limitations include potentially limited generalizability given the retrospective design at a single institution. Also, palliative care consultation was initiated by ED clinicians, which may have led to selection bias, though a high rate of altered GOC after intervention suggests significant, unaddressed need in the outlying population.
To ensure safe and effective care at home, most hospice agencies provide 24-hour call services to patients and their families. However, responding to such calls can be very extensive since so many calls occur after hours when staff are fewer. The purpose of the current study was to better understand the types of after-hours calls and differences across patient teams. By understanding why these calls are made, we might be able to reduce the number of avoidable after-hours calls. This descriptive retrospective chart review study was conducted using data from 9 patient care teams within a single hospice agency. During the 6-month study period, the hospice agency received 1596 after-hours calls. The number of calls averaged 10.3 per night. Common clinical-related calls included consultations about the shortness of breath (10.2%) and pain (9.5%). A total of 37.7% of the calls were nonclinical, nonemergency in nature, including requests for supplies (29.6%) and medication refills (8.1%). There were statistically significant differences (P < .05) between teams in the numbers of supply request calls, medication refill request calls, and calls associated with clinical-related issues. Also, there was a statistically significant difference in the after-hours calls across teams that resulted in dispatching staff to a home (P < .05). These findings suggest that many after-hours calls would be more appropriately addressed during regular daytime hours. There are significant across-team differences that are not yet well understood. Further studies are needed to determine how to reduce the number of after-hours calls.
Du fait des multiples formes de la douleur, sa prise en charge est à géométrie variable. L’évaluation, son retentissement, son traitement, l’évaluation du bénéfice et les effets secondaires sont à chaque fois un modèle singulier.
Les équipes ressources régionales en soins palliatifs pédiatriques interviennent à la demande des équipes soignantes qui gravitent autour de l’enfant et de sa famille. Au sein de ces équipes pluriprofessionnelles, la puéricultrice participe à l’élaboration et à la coordination du projet de vie de l’enfant en soins palliatifs en permettant le lien domicile-ville-hôpital. Grâce à son expertise, elle veille à garder l’enfant au centre des préoccupations soignantes en tenant compte de la place des parents.
Background: Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants.
Purpose: The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital.
Methods: This was a retrospective medical record review.
Findings: The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management.
Implications for Practice: Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU.
Implications for Research: These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms.
Interventional procedures benefit palliative care team patients in a variety of different ways, providing a means to manage a wide array of debilitating symptoms. The interprofessional collaboration of palliative care and interventional radiology is imperative for the successful management of chronically ill patients in their homes. This article briefly defines the roles of the palliative care team and that of interventional radiology in patient symptom management, providing a better understanding of the differences and the interface of these disciplines in the complex symptom management of palliative patients.
BACKGROUND: According to the World Health Organization, palliative care is one of the main components of healthcare. As the incidence of cancer is increasing in the world, home-based palliative care can be beneficial for many patients. This study was designed to explore health care providers' perceptions about home-based palliative care in terminally ill cancer patients.
METHODS: This qualitative study was carried out using the conventional content analysis from October 2016 to September 2018 in Iran. Participants were home care providers who were selected using purposive sampling. The data were collected through 18 individual interviews, and a focus group meeting. Data were analyzed based on the method proposed by Lundman and Graneheim.
RESULTS: from the data analysis, 511 initial codes were extracted, which were categorized into the two main categories of challenges and opportunities for home-based palliative care and 10 subcategories. The subcategories of challenges included deficiencies in inter-sectoral and inter-professional cooperation, lack of infrastructures for end-of-life care, challenges related to the management of death, challenges of transferring patients to home, providing non-academic palliative care, lack of political commitment of the government and Spiritual vacuum. The category of opportunities included subcategories of cost-effectiveness, moving towards socializing health, and structure of the health system.
CONCLUSIONS: Home-based palliative care requires government and health system support. Structural and process modification in the healthcare can provide conditions in which terminally ill cancer patients receive appropriate care in home and experience death with dignity through support of family, friends and healthcare.
AIM: To explore and compare acute and long-term care professionals' perspectives about pediatric palliative care.
METHODS: Focus group interviews were conducted in 2016-2017 with professionals from acute (Emergency Department, Intensive Care Unit) and long-term care (Complex Care Service, Palliative Care) teams.
RESULTS: Fifty-eight participants were enrolled. Palliative care definitions were similar throughout groups: to provide active care early in the illness, focusing on the child as a whole and supporting families. Each group perceived a different role in the patient's illness trajectory, reflecting their own culture of care. They demonstrated important differences in their approach to palliative care. Disagreements regarding when or how to discuss goals of care were expressed. Acute care professionals reported discomfort when having to introduce these discussions for the first time, while long-term care professionals perceived negative judgments about their patients' quality of life by acute care teams during health events. Personalized care, communication with families and continuity of care were thought to be key elements to improve care.
CONCLUSION: Pediatric palliative care is well recognized throughout specialties, yet continuity of care is challenged by groups' roles and interventions in a patient's illness. A reflective and mutual clinical approach is needed to improve quality of care and professionals' satisfaction.
BACKGROUND: American College of Surgeons recommends palliative care and surgeons collaborate on the care of patients with poor prognoses. These collaborations are done to discuss symptom management and goals of care. However, contemporary practice patterns of palliative care consultation for surgical patients are poorly defined. We aim to describe the use of palliative care consultation for patients admitted to our institution's surgical services who died during their index hospital admission.
METHODS: The Duke Enterprise Data Unified Content Explorer 2014 to 2016 was queried for patients admitted to general surgery services who died during their admission. Secondary measures included length of stay, time spent in consultation, days from consultation to death, and execution of a care plan.
RESULTS: Of the 105 patients identified, 6 died on the day of admission, and 39 (37%) received palliative care consultation. Our data showed that patients who received consultation were generally older, white, and insured. Median number of days between palliative consult and death was 3 days (interquartile range: 1-8). Goals-of-care conversations were the indication for consultation in 62.5% of patients. The proposed plan by the consultants was congruent with the primary team in 66.7% of cases.
CONCLUSIONS: Palliative care consultations were underutilized in surgical patients who died while admitted to the general surgical service at our institution. When palliative care is consulted, the plan of the primary surgical team and the palliative team align. Identification of barriers to consultation and promotion of the benefits of palliative care among surgical teams is warranted.
Background: Unregulated care providers (UCPs) are at the forefront of direct client care in the community. Their services are required to meet the demand for home-based palliative care from a growing older population, yet understanding of UCPs involvement in care is limited. The study aimed to identify the types and frequencies of tasks performed by UCPs in home-based palliative care to older clients (> 65 years) and their families and to describe UCPs’ engagement in care, and barriers and facilitators to their work.
Methods: A mixed method approach was used comprising a quantitative retrospective chart review of UCPs’ tasks (n = 66), qualitative content analysis of progress notes from clients’ charts (n = 85), and thematic analyses of in-depth interviews with UCPs (n = 10).
Results: A thematic structure was derived from analyses and integration of data from the chart review and interviews. The themes reflect the physical, affective, and relational aspects of UCPs involvement in the care of clients and families at the end of life. The findings indicate that although a significant proportion (63%) of the 13, 558 UCP tasks identified were directed toward meeting clients’ physical care needs, their presence in the home, made UCPs an important source of information on the client’s condition; observing and appraising the situation. Further, the nature of their work and frequent interactions with clients and families also presented opportunities for UCPs to provide emotional support; a role UCPs felt was integral to their work.
Conclusions: The study highlights the challenging nature of palliative care to older clients and their families whose needs are often complicated, situated within the unique environment of home care where supervision of UCPs is at a distance. Challenges and facilitators to UCPs’ work in this context are discussed with recommendations to support UCPs in their roles.
INTRODUCTION: All healthcare providers can influence the delivery and outcome of a palliative approach to care, ensuring that everyone has 'equitable access to quality care based on assessed need as they approach and reach the end-of-life'. This study mapped the delivery of palliative care in far west New South Wales (NSW), Australia, with objectives to: identify who was involved in providing such care in the Far West Local Health District (FWLHD), how they connect, and any gaps in the network describe what care was provided and identify any challenges to care provision. The mapping process and outcomes can be used to guide the implementation of new models of care by building on the localised knowledge of current networks, provision of care and challenges.
METHODS: Semi-structured interviews were undertaken with members of the specialist palliative care service and generalist healthcare providers within the FWLHD. Fifteen interviews were conducted over 7 months. Content analyses of interview transcripts identified processes and challenges as well as improvements for care. A network analysis was conducted to identify unidirectional connections and 'map' the services.
RESULTS: The vast network demonstrates extensive long-term involvement in palliative care as well as established connections and opportunities for improving communication between the services and providers involved in palliative care. Palliative practice is varied and challenging within the network; challenges include communication, early identification and education. Mapping the existing networks, resources and relationships proved invaluable to guide the implementation of a palliative approach to care.
CONCLUSION: The implementation of a palliative approach, as with any service model, requires agreement and engagement across relevant healthcare organisations, services and providers. Mapping and understanding the network of providers (and organisations) that support healthcare delivery before implementing new models of care will identify strengths and gaps within the network. This knowledge will then support new and integrated connections that enhance the provision of care so that it is acceptable, fit for purpose and regionally responsive.
Au Québec, le rôle des maisons de SP est central dans l'offre de soins en fin de vie. Avec l'évolution et le vieillissement de la société, des lois et du travail, qui se complexifient, les soignants et l'ensemble des intervenants se voient exposés à une demande émotionnelle croissante combinée à d'autres facteurs de stress. Pourtant, aucun programme visant à favoriser le bien-être au travail pour ce type d'intervenants ne semble disponible au Canada. S'inspirant d'écrits et d'expériences internationales, un processus novateur permettant l'élaboration et la mise en oeuvre d'un programme de bien-être pour intervenants en maison de soins palliatifs (SP) a été entrepris suivant l'influence de la recherche-action. L'article décrit cette démarche de coconstruction. Ce type d'innovation pourrait permettre l'amorce d'une transformation systémique reconnaissant l'importance de soutenir les acteurs den SP pour offrir des soins de fin de vie de qualité.
Interdisciplinary palliative care teams provide critical, comprehensive end-of-life care, although the accumulated literature points toward barriers that impede their effectiveness. The current phenomenological qualitative study presents perceptions of chaplaincy interns (N = 24) and social work interns (N = 23) after a semester-long end-of-life clinical training experience with interdisciplinary palliative care teams. Analysis of the end of semester reflections resulted in seven themes, which are fairly consistent with the literature base. The described experiential learning and reflections in the current study are powerful and can inform how to prepare practitioners for teamwork and compassionate end-of-life care.