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).
Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider “best” practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (=10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a “good” death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with =10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of “good” pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education
Objective: The aim of this study was to examine the effectiveness and efficiency of interprofessional case conferences on home-based end-of-life care to bridge perceptions gaps regarding ethical dilemmas among different healthcare professionals and analyze essential issues extracted the interprofessional discussions.
Patients and Methods: The participants could spend only a limited amount of time after their working hours. Therefore, we shortened and simplified each of three case scenarios so that the discussions do not last longer than 90 minutes. For the case conferences, we selected 3 cases, which entailed the following ethical dilemmas pertaining to home-based end-of-life care: refusal of hospital admission, passive euthanasia, and emergency transport. Participant responses were audio-recorded, transcribed, and analyzed using qualitative content analysis and Jonsen's four topics approach.
Results: A total of 136 healthcare professionals (11 physicians, 35 nurses, and 90 care workers) participated in the case conferences. The physicians, nurses, and care workers differed in their perceptions of and attitudes toward each case, but there were no interprofessional conflicts. Despite the short duration of each case conference (90 minutes), the participants were able to discuss a wide range of medical ethical issues that were related to the provision of appropriate home-based end-of-life care to older adults. These issues included discrimination against older adults (ageism), self-determination, an unmet desire for caregiver-patient communication, insufficient end-of-life care skills and education, healthcare costs, and legal issues.
Conclusion: The physicians, nurses, and care workers differed in their perceptions of and attitudes toward each case, but there were no interprofessional conflicts.
IMPORTANCE: In the Kilimanjaro region of Tanzania, there are no advance care planning (ACP) protocols being used to document patient preferences for end-of-life (EoL) care. There is a general avoidance of the topic and contemplating ACP in healthcare-limited regions can be an ethically complex subject. Nonetheless, evidence from similar settings indicate that an appropriate quality of life is valued, even as one is dying. What differs amongst cultures is the definition of a 'good death'.
OBJECTIVE: Evaluate perceptions of quality of death and advance EoL preparation in Moshi, Tanzania.
DESIGN: 13 focus group discussions (FGDs) were conducted in Swahili using a semi-structured guide. These discussions were audio-recorded, transcribed, translated, and coded using an inductive approach.
SETTING: Kilimanjaro Christian Medical Centre (KCMC), referral hospital for northern Tanzania.
PARTICIPANTS: A total of 122 participants, including patients with life-threatening illnesses (34), their relatives/friends (29), healthcare professionals (29; HCPs; doctors and nurses), and allied HCPs (30; community health workers, religious leaders, and social workers) from KCMC, or nearby within Moshi, participated in this study.
FINDINGS: In characterizing Good Death, 7 first-order themes emerged, and, of these themes, Religious & Spiritual Wellness, Family & Interpersonal Wellness, Grief Coping & Emotional Wellness, and Optimal Timing comprised the second-order theme, EoL Preparation and Life Completion. The other first-order themes for Good Death were Minimal Suffering & Burden, Quality of Care by Formal Caregivers, and Quality of Care by Informal Caregivers.
INTERPRETATION: The results of this study provide a robust thematic description of Good Death in northern Tanzania and they lay the groundwork for future clinical and research endeavors to improve the quality of EoL care at KCMC.
We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
OBJECTIVE: Hospice family caregivers are seeking additional information related to patient care, pain and symptom management, and self-care. This study interviewed hospice staff about the potential dissemination of bilingual telenovelas to address these caregiver needs.
METHODS: Qualitative structured phone interviews were conducted with 22 hospice professionals from 17 different hospice organizations in 3 different Midwest states. The interviews were conducted from October to December 2019. Hospice staff volunteers were recruited from conferences, then individual interviews were audio-recorded, transcribed, and thematic analysis was conducted to gain an in-depth understanding of how to best implement telenovela video education into hospice care.
RESULTS: Most participants were hospice nurses (36%) located primarily in Missouri (91%), with a mean of 9 years of experience. Three discrete themes emerged, the educational resources currently provided to patient/families, perceptions of the usefulness of telenovelas for education, and practical suggestions regarding the dissemination of telenovelas. The development of 4 telenovela videos covering different topics is described.
CONCLUSION: Hospice staff responded favorably to the concept of telenovelas and identified important keys for dissemination.
BACKGROUND: With the highest number of cases in the world as of April 13, 2020, New York City (NYC) became the epicenter of the global coronavirus disease 2019 (COVID-19) pandemic. The data regarding palliative team involvement in patients with COVID-19, however, remains scarce. We aimed to investigate outcomes of palliative team involvement for the patients with COVID-19 in NYC.
METHODS: Consecutive 225 patients with confirmed COVID-19 requiring hospitalization in our urban academic medical center in NYC were analyzed. Patients were divided into 2 groups, those with a palliative care consult (palliative group: 14.2% [n = 32]) versus those with no palliative care consult (no palliative group: 85.8% [n = 193]).
RESULTS: The palliative group was older and had more comorbidities. During the hospital course, the palliative group had more intensive care unit stays, rapid response team activations, and more use of vasopressors (P < .05). Patients with palliative care had higher rates of invasive mechanical ventilation than those without (46.9% vs 10.4%, P < .001). Cardiopulmonary resuscitation was performed in 12 patients (6.5% vs 5.2%, P = .77) and death rate was 100% in both subsets. Notably, initial code status was not different between the 2 groups, however, code status at discharge was significantly different between them (P < .001). The rate of full code decreased by 70% in the palliative group and by 47.5% in the no palliative care group from admission to the time of death.
CONCLUSIONS: Critically ill patients hospitalized for COVID-19 benefit from palliative team consults by helping to clarify advanced directives and minimize futile resuscitative efforts.
Conducting palliative care research can be personally and professionally challenging. While limitations in funding and training opportunities are well-described, a less recognized barrier to successful palliative care research is creating a sustainable and resilient team. In this special report, we describe the experience and lessons-learned in a single palliative care research lab. In the first few years of the program, 75% of staff quit, citing burnout and the emotional tolls of their work. To address our sustainability, we translated resilience theory to practice. First, we identified and operationalized shared mission and values. Next, we conducted a resilience resource needs assessment for both individual team-members and the larger team as a whole, and created a workshop based curriculum to address unmet personal and professional support needs. Finally, we changed our leadership approach to foster psychological safety and shared mission. Since then, no team-member has left and the program has thrived. As the demand for rigorous palliative care research grows, we hope this report will provide perspective and ideas to other established and emerging palliative care research programs.
Hospice interdisciplinary teams (IDTs) are required to meet regularly to update care plans for terminally ill patients and their family caregivers. Although providers see value in these meetings, they also experience frustration over meeting inefficiencies and communication challenges. The current article presents ENVISION, a tool designed to improve communication in hospice IDT meetings by providing attendees with access to up-to-date patient and family data to inform clinical decision making. In the current qualitative descriptive study, researchers explored the perspectives of hospice providers (n = 21) and family caregivers (n = 10) regarding ENVISION's usefulness and ease of use. Numerous factors influenced participants' perceptions of the tool as useful, including its impact on task efficiency, effectiveness, and difficulty. Perceptions of ENVISION's ease of use focused on ease of learning, operating, and interpreting data the tool provided. Findings suggest ENVISION would benefit hospice nurses in care management and senior leadership positions. [Journal of Gerontological Nursing, 46(7), 9-14.].
L’offre de soins à domicile a beaucoup évolué ces vingt dernières années pour répondre aux besoins de la population et pour s’adapter aux contraintes du système de santé. Après les réseaux de santé, les maisons des réseaux, puis les plateformes territoriales d’appui, de nouveaux dispositifs d’aide à la coordination permettent aux soignants du domicile d’organiser la prise en charge des personnes en situation de santé complexe. Illustration avec un réseau de soins palliatifs en Normandie.
Cet ouvrage aborde la nécessité de réfléchir ensemble au sens du prendre soin et du fait d'être soigné pour mettre en valeur l'importance d'une implication personnelle de chacun dans la relation en vue de soins de qualité.
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Effective team communication is necessary for the provision of high-quality health care. Yet, recent graduates from diverse health-care disciplines report inadequate training in communication skills and end-of-life care. This study explored the impact of a withdrawal of life-sustaining measures interprofessional simulation on team communication skills of students representing medicine, nursing, and social work. The 3-phase simulation required teams to communicate with the patient, family, and one another in the care of a seriously ill patient at the end of life. Team communication in the filmed simulations was analyzed via the Gap-Kalamazoo Communication Checklist. Results revealed fair to good communication across the 9 communication domains. Overall team communication was strongest in “shares information” and lowest in “understands the patient’s and family’s perspective” domains. Field notes revealed 5 primary themes—Team Dynamics, Awkwardness, Empathy is Everything, Build a Relationship, and Communicating Knowledge When You Have It—in the course of the data analysis. Logistical challenges encountered in simulation development and implementation are presented, along with proposed solutions that were effective for this study. This simulation provided an opportunity for interprofessional health-care provider students to learn team communication skills within an end-of-life care context.
De plus en plus souvent, nous entendons parler d'euthanasie : que ce soit par les médias, par les politiques, par les services publics ou par diverses associations, la thématique est sur toutes les langues.
Cependant, force est de constater que le sujet est bien souvent abordé avec méconnaissance ou parti pris. Mon souhait est donc d'intervenir dans cet ouvrage pour décrire le plus fidèlement possible la très dure réalité qui entoure le processus d'euthanasie.
Non, la vie dans nos hôpitaux n'est pas - ou n'est plus - un long fleuve tranquille. Elle est en crue permanente, avec de nombreux débordements quotidiens. En tant que membre du personnel soignant, je constate combien il nous est difficile à nous, infirmiers, médecins, psychologues, assistants sociaux, de garder la tête hors de l'eau, lorsqu'il est question de ce qu'on appelle pompeusement "éthique".
Après un point sur les théorisations de la mort propre, je m'arrêterai sur la question de la pensée de leur propre mort par des sujets psychotiques et/ou présentant un déficit cognitif. Enfin, je reprendrai la question du côté des professionnels et de leurs difficultés à penser la fin de vie de "leurs" résidents et à se représenter comment ceux-ci pensent, ou non, leur propre mort.
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Psychologue en équipe mobile de soins palliatifs, nous intervenons en pluridisciplinarité en intrahospitalier mais aussiauprès de structures relevant du sanitaire et du social. Nous avons pu constater que les professionnels du handicap ont un lien d'attachement particulier à leurs résidents. L'accompagnement des résidents dans le quotidien et les projets de vie inhérents aux institutions sont le signe d'un transfert et d'un contre-transfert massifs. Dans ce contexte, penser l'éventualité de la mort des résidents est marqué du sceau du refoulement. Le fantasme d'immortalité - "ça n'arrive qu'aux autres" - est présent, ce qui peut empêcher la parole à ce sujet et susciter des angoisses primitives.
AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams.
BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs.
METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis.
RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities.
CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size.
IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.
Aim: To investigate the association between a hospital palliative care unit assessment and hospital outcome.
Methods: This was a prospective cohort study. Data were assessed from all patients treated and followed by the hospital palliative care team (HPCT) from November 2016 until December 2017.
Results: The mean age of the 588 patients was 73.15±13.6 years. All of the patients included in the study were referred to palliative care. A large proportion of patients were affected by cancer, 69.7% (410), while 30.3% (178) were affected by an advanced chronic illness. The three most frequent cancers were: gastrointestinal (n=81, 19.8%), gynaecological (n=66, 16.1%) and lung (n=63, 15.4%); the three most frequent chronic advanced diseases were: advanced dementia (n=45, 25.3%), severe ischaemic/haemorrhagic stroke (n=36, 20.2%) and severe heart failure (n=25, 15.3%). The majority of patients were in clinical wards (n=476, 81.0%) and the average length of stay was 22.9 days. Hospital outcome trends were evaluated in terms of length of stay and number of deaths that occurred in the hospital. In particular, length of stay decreased from 25.8 days to 18.1 days, hospital death from 13 to 0 during the time that the HPCT assessed patients for an appropriate discharge.
Conclusion: The HPCT is an effective means of managing patients affected by severe illness, reducing the number of deaths that occur within the hospital, long periods of hospitalisation and instances of readmission. However, further studies are required to fully assess the impact of an HPCT on hospital outcomes.
Deaths in long-term care (LTC) facilities in Canada have increased over the years,1,2 yet the link between exposure to deaths and dying and staff well-being has rarely been investigated. In this study, we examined predictors of staff burnout, focusing specifically on exposure to deaths and dying in LTC.
Palliative care is defined as care provided by a specially trained team of clinicians that is both patient and family centered and seeks to enhance quality of life throughout the continuum of illness. Multiple studies have reported benefits associated with integrating early palliative care with standard oncology care for patients with advanced cancer to address patients’ symptoms, understanding of their disease, coping strategies, and medical decision-making. Consequently, guidelines recommend early integration of palliative care for patients with advanced cancer, concurrently with disease-directed and life-prolonging treatment. Despite the established benefits and guideline recommendations for early integration of palliative care in oncology, many patients do not receive palliative care services or receive them late in the illness trajectory, potentially due to both patient and clinician misperceptions that palliative care is appropriate only after a patient has discontinued life-prolonging therapies. Thus, a growing body of literature has sought to demonstrate that palliative care improves patient outcomes without shortening survival.