Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round and, of those, 13 recommendations were chosen as the most important (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care centers: Every healthcare center should ensure access to PC medicines, and 5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
Cet ouvrage de la collection "Espace éthique" regroupe des contributions sur la notion de vulnérabilité, notamment sur les problèmes et les opportunités posés par son usage dans la société. Ainsi, une politique de protection des personnes vulnérables peut, dans le même temps, être une source d'exclusion. Les auteurs estiment que cette nouvelle éthique peut être positive à condition de ne pas verser dans l'apologie de la vulnérabilité.
Cet atlas présente les ressources pays par pays en matière de soins palliatifs : services pour adultes ou enfants, lits dédiés, composition et nombre d'équipes, tendance et objectifs des politiques nationales de santé des pays.
Background: Palliative care clinicians frequently encounter situations in which there are ethical dilemmas about the right thing to do. Palliative medicine fellowships are required to include education about ethics. Our fellowship increased fellows’ ethics education through monthly didactics, lectures in a professional development series, and a month-long ethics rotation.
Methods: We sought input from graduates of our palliative medicine fellowship about the content and amount of the ethics education they received. Fellowship graduates were invited via e-mail to complete an online survey about the ethics education they received during fellowship. They were asked questions about their work environment, frequency with which they encounter ethical dilemmas, their perspectives on the ethics content, the amount of ethics education they received during fellowship, and their input on ways to improve the ethics education within the fellowship.
Results: Twenty-eight (82%) of 34 fellowship graduates completed the survey; 93% noted that they encounter ethical dilemmas in their work, with half encountering these on a daily or weekly basis, and 86% noted that colleagues ask them questions about ethics because of their palliative medicine training. None responded that they had received too much ethics education. Fellowship graduates identified ethics content that has been useful since completing fellowship and suggested ways to improve ethics education for future fellows.
Conclusion: Graduates of a palliative medicine fellowship encounter ethical dilemmas often and frequently are asked questions about ethics. Palliative medicine fellowships may want to examine their ethics curriculum to ensure that graduating fellows are learning about relevant ethics topics and are comfortable discussing ethical dilemmas with others.
The use of multidimensional scales for assessing fear of death among nursing students can assist in teaching and evaluating the effectiveness of targeted training in thanatology. Research has demonstrated good psychometric characteristics of the Czech version of the Collett–Lester Fear of Death Scale (CL-FODS). It was applied to nursing students (N = 256), who reported as their biggest fear the process of their own dying. Greater fear of death and dying was found in students who had no experience of the dying and death of a loved one. Good internal consistency was achieved for the four subscales of the Czech CL-FODS.
Background: Little is known about how certain educational interventions may improve informed code status discussions by physician assistant (PA) and nurse practitioner students.
Methods: This is a prospective, prospective, single academic center pilot study utilizing a short case-based PowerPoint that reviewed the differences between code status choices and the likelihood of survival to hospital discharge of attempted resuscitation after a cardiac arrest. Training occurred between September 1, 2017, and May 31, 2018. The study population included PA and adult gerontology acute care nurse practitioner (AGACNP) students during their inpatient internal medicine rotation (n = 9) and preclinical PA students (n = 5).
Results: After training, there was a significant increase in knowledge in the likelihood of survival to hospital discharge (P = .01) and comfort level in having an informed code status discussion (3.36 ± 0.81 vs 4.10 ± 0.80, P = .02). For questions related to identification of the correct code status, there were no significant differences before and after the intervention.
Conclusion: A short case-based PowerPoint viewed by PA and AGACNP students increased the knowledge about the likelihood of survival to hospital discharge of attempted resuscitation after a cardiac arrest and increased the comfort level of having code status discussions with patients by PA and AGACNP students.
L’art médical requière un apprentissage long et peut revêtir un caractère initiatique, en particulier grâce au compagnonnage. Une des épreuves la plus révélatrice du passage d’étudiant à celui de médecin responsable est celle de la confrontation à la mort et à la fin de vie. L’objectif de cet article est de partir de ma propre expérience de ces questions et des interrogations qui ont jalonné mon cursus pour questionner mes pratiques de la médecine gériatrique. De l’illusion d’une victoire permanente du progrès médical contre la maladie et la mort, le cursus théorique permet d’appréhender les limites de la pratique médicale, le handicap, l’inéluctable fin de la vie ainsi que la prise en charge optimale d’accompagnement. Les apprentissages pratiques et la confrontation avec les véritables limites questionnent également la place laissée aux patients dans des décisions aussi importantes que celles de leur fin de vie. Cela mobilise les compétences du médecin défenseur des droits des patients, humaniste et capable de réflexivité sur ses pratiques, qui assume d’accompagner un patient jusqu’au décès, respecte sa dignité et ses choix éclairés et ne le laisse pas seul face à l’incompréhension ultime qu’est la mort, y compris sociale. Ce cheminement personnel d’un apprentissage théorique et pratique de la gériatrie et de la médecine palliative témoigne de l’appropriation professionnelle de l’éthique de la sollicitude de Paul Ricœur, reconnaissant notre propre vulnérabilité à travers celle d’autrui.
BACKGROUND: Older people in long-term care facilities are at a greater risk of receiving care at the end of life that does not adequately meet their needs, yet staff in long-term care are often unprepared to provide palliative care. The objective of the study was to explore palliative care nurse specialists' experiences regarding the benefits of and barriers to the implementation of a palliative care educational intervention, Supportive Hospice Aged Residential Exchange (SHARE) in 20 long-term care facilities.
METHODS: Reflective logs (465), recorded over the course of the yearlong SHARE intervention by the three palliative care nurse specialists from two local hospices, who were the on-site mentors, were qualitatively analyzed by two researchers utilizing inductive content analysis.
RESULTS: Categories emerging from the logs include the importance of relationships, knowledge exchange, communication, and the challenges of providing palliative care in a long-term care setting.
CONCLUSION: Evidence from the logs indicated that sustained relationships between the palliative care nurse specialists and staff (registered nurses, healthcare assistants) as well as reciprocal learning were key factors supporting the implementation of this palliative care educational intervention. Challenges remain however in relation to staffing levels, which further emphasizes the importance of palliative care nurse specialist presence as a point of stability.
Objectives: Impending death is poorly recognised. Many undergraduate healthcare professionals will not have experience of meeting or caring for someone who is dying. As death can occur in any setting, at any time, it is vital that all healthcare students, regardless of the setting they go on to work in, have end-of-life care (EOLC) training. The aim was to determine current palliative care training at the undergraduate level, in multiple professions, in recognising and communicating dying.
Methods: Current UK undergraduate courses in medicine, adult nursing, occupational therapy, social work and physiotherapy were included. All courses received an email asking what training is currently offered in the recognition and communication of dying, and what time was dedicated to this.
Results: A total of 73/198 (37%) courses responded to the request for information. 18/20 medical courses provided training in recognising when patients were dying (median 2 hours), and 17/20 provided training in the communication of dying (median 3 hours). 80% (43/54) of nursing and allied health professional courses provided some training in EOLC. Many of the course organisers expressed frustration at the lack of resources, funding and time to include more training. Those courses with more palliative care provision often had a ‘champion’ to advocate for it.
Conclusions: Training in EOLC was inconsistent across courses and professions. Further research is needed to understand how to remove the barriers identified and to improve the consistency of current training.
This paper presents a study that examines the potential value of a new and innovative inter-professional education (IPE) experience for final year midwifery and children's nursing students focused on improving awareness of end-of-life care for infants in conjunction with the support of their families. The study uses an action research approach to examine midwifery and children's nursing student experiences of an IPE initiative in developing knowledge regarding perinatal/neonatal palliative care.
The setting is a Higher Education Institute in the South of England that included final year midwifery students (n = 39) and children's nursing students (n = 34) taking part in the study. Qualitative and quantitative data indicated that the IPE intervention had proven worth in developing knowledge and confidence in the students as both student groupings felt they lacked knowledge and confidence about perinatal/neonatal palliative care before attending the study day.
Students felt that learning with, from and about the other profession represented was important in generating their knowledge. Educators should explore innovative ways to enable the further development of the fledgling speciality of perinatal/neonatal palliative care through education on an interprofessional platform.
Primary care providers tackle the full range of health care needsacross the lifespan. In addition to a focus on health promotion anddisease prevention, they are called upon to manage chronic, serious,and/or life-limiting conditions. This is especially true in the patientpopulation over the age of 65 who are likely to have one or morechronic conditions (McCormick, Chai, & Meir, 2012).
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Worldwide, health care is becoming more complex and multifaceted. Nurses, who spend more time at the bedside or out in the community with patients and their families than any other health care professional, need leadership-building skills in order to navigate these challenging times. New guidelines focus on interprofessional and holistic care, emphasizing the importance of building leadership skills and abilities. The World Health Organization and the European Association for Palliative Care have shown interest in influencing the development and implementation of palliative care services globally, given the increasingly aging population, the growing incidence of cancer, and the human immunodeficiency virus/AIDS epidemic. Despite challenges in developing leadership skills in nurses throughout Central and Eastern Europe (CEE), visionary nursing leaders throughout these countries have taken the opportunity to develop the Transformational Palliative Nursing Leadership Program, which has been designed to improve the leadership abilities of palliative care nurses throughout CEE countries. The purpose of the Transformational Palliative Nursing Leadership Program education is to equip palliative care nurses with the ability to promote, develop, and sustain this specialized care in CEE countries or any other part of the world.
Issue: Medical assistance in dying (MAID) became legal in Quebec on December 10, 2015, and in the rest of Canada on June 17, 2016. This enabled 6,749 deaths through physician-assisted suicide or euthanasia between December 10, 2015 and October 31, 2018. While the death of a patient is a common experience for medical trainees, those that occur through MAID have unique features related to the methods, the timeline, the intended role of the physician in causing the death, and the request of the patient that initiates the process. These aspects necessitate a distinct approach to MAID medical education.
Evidence: Despite the legalization of MAID in a growing number of jurisdictions, there is virtually no literature to guide MAID education in clinical practice. The cumulative evidence regarding the impact of patient death on medical students, residents, and attending physicians suggests a need for supported discussion and debriefing to process and reflect on the emotional experiences that follow patient death. This is especially important with MAID, in which there are unique ethical and psychological issues related to the physician's direct role in causing the death of a patient. There is little published research on the impact such deaths have on physicians who provide MAID, or on others who are indirectly involved. However, there is evidence that learners desire MAID-specific education tailored to their unique needs. Didactic education about the medical and legal domains of MAID alone is insufficient to support learners' needs. Experiential case-based learning with supervisory support has the potential to enhance training in end-of-life care in general, and specifically in MAID. The authors' first clinical experience with a patient requesting MAID on an internal medicine clinical teaching unit (CTU) highlighted gaps in their preparedness to meet the associated professional and personal demands. Reflecting on these perceived gaps, and on the needs of learners identified in the literature on patient death and MAID education, the authors created a framework to guide learning at the point of care of a patient requesting MAID. Represented in a MAID Education Cogwheel and discussion guide, this framework specifies learning objectives and methods in six domains: medical, legal, moral, ethical, cultural, and psychosocial. Implications: Following a MAID request, attending physicians can use the framework to guide learners in ongoing conversations addressing these domains. Inter-professional participation can include such disciplines as psychiatry, palliative care, bioethics, pharmacy, nursing, physical and occupational therapy, social work, and spiritual care. Further research is necessary to test this framework to determine its' feasibility, efficacy, and generalizability.
INTRODUCTION: A clinical specialist radiation therapist (CSRT) position in palliative radiation therapy (RT) was created at our institution. Herein, we report the details of the CSRT's orientation, training, and support program.
METHODS: We performed an audit and needs assessment of palliative RT services at our centre. This identified opportunities for improvement that could be facilitated by the CSRT. We defined the CSRT job description including priority responsibilities: (1) optimizing palliative RT services for outpatients and developing a rapid access palliative RT program, (2) optimizing palliative RT services for inpatients at our institution, (3) improving links to community physicians and hospitals caring for patients with advanced cancers. We formed a core resource team to provide ongoing support and to design and implement the orientation and training program. The program involved training in clerical and administrative systems as well as treatment planning and physics training relevant to palliative RT. Clinical placements at several hospitals were arranged in both inpatient and outpatient settings. The CSRT worked with radiation and medical oncologists, palliative care specialists, nurse practitioners, hospitalists, and social workers.
RESULTS: Through clinical placements and self-directed learning, the CSRT gained knowledge and competencies in patient care coordination, history taking and physical examination, clinical oncology practice including the evidence-based use of palliative RT and symptom control measures, treatment planning, communication, patient advocacy, and advance care planning. We provided practice resources including office space and a planning station, educational opportunities including workshops in palliative and psychosocial care, and research opportunities including methodologic and research ethics training.
DISCUSSION: To our knowledge, this is the first detailed report of its kind for an advanced practice radiation therapy role. We hope our report will inform the design and implementation of programs elsewhere to help prepare individuals for similar roles in palliative RT.
CONCLUSION: The CSRT in palliative RT at our institution underwent a comprehensive orientation and training program. Institutions with similar CSRT positions are encouraged to report the details of their own programs.
Sexual and gender minorities experience disparities throughout the life course. These are especially detrimental at the end-of-life and can include disenfranchised grief, homophobia and transphobia from medical staff, and forced outing. The best healthcare training approach to ameliorate health disparities is debated. Cultural competency trainings for clinicians have been commonly proposed by major medical institutions and certifying bodies to ameliorate lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) health disparities. However, cultural competency trainings have limitations, including (1) false competence, (2) measurement issues, and (3) ecological fallacy (i.e., assuming individuals conform to the norms of their cultural group). The purpose of this commentary is to describe the limitations of cultural competency training and argue for healthcare systems to implement cultural humility trainings as a way to reduce LGBTQ health disparities at the end-of-life. The strengths of cultural humility training include focus on (1) individuals instead of their cultural groups, (2) self-reflection, and (3) active listening. While there are challenges to implementing cultural humility trainings in the health-care system, we assert that these trainings align with the aims of healthcare systems and can be an essential tool in reducing LGBTQ health disparities. We suggest practical components of successful cultural humility trainings including leadership buy-in, appropriate outcome measurements, multiple training sessions, and fostering a safe reflection space.
Simulation is a growing model of education in many medical disciplines. Withdrawal of mechanical ventilation is an important skillset for palliative medicine practitioners who must be facile with a variety of end-of-life scenarios and is well suited to the simulation laboratory. We describe a novel approach using high fidelity simulation to design a curriculum to teach Hospice & Palliative Medicine (HPM) fellows the practical aspects of managing a compassionate terminal extubation. This simulation session aims to equip palliative fellows with a knowledge base of respiratory physiology and mechanical ventilation as well as the practical experience of performing a terminal extubation. We designed a 3 hour simulation session which includes a one hour didactic followed by 2 hours of simulation, with 4 cases that focus on different teaching points regarding symptom management and practical aspects of removing the endotracheal tube . The session was designed as an annual session for HPM fellows in our region during a collaborative educational conference. Based on feedback, the session is scheduled for the beginning of the academic year and each fellow is given the opportunity to physically remove the endotracheal tube. Simulation can be effectively used to teach practical and complex bedside skills such as withdrawal of mechanical ventilation to palliative medicine trainees. This method of teaching could be expanded to teach other advanced hospice and palliative care skills.
In a recent American Journal of Hospice and Palliative Medicine article entitled "Ethics Education During Palliative Medicine Fellowship," Dr Elizabeth Vig and Dr Susan Merel detail the ethics curriculum of the University of Washington School of Medicine's Palliative Medicine Fellowship, including their efforts in the past several years to increase and bolster the fellowship's ethics curriculum. This letter builds upon this topic and discusses some other strategies and methods for ethics education and training that fellowship programs may consider adopting to bolster their ethics curriculum.
BACKGROUND: Increasing the quality of life with short interventions for vulnerable patients is one of the objectives of palliative care. Biographical approaches are used in a range of different interventions which may require considerable resources of staff time and energy. This study evaluated the feasibility of training hospice volunteers in biographical interviews of patients confronted with a life-limiting disease. For the purpose of this study, we evaluated resources such as time needed for training, coordination and supervision, outcome such as completion of the intervention in appropriate time and risks such as causing distress in patients or volunteers as major determinants of feasibility.
METHODS: Nine volunteers from a hospice service attended an advanced training with an introduction to palliative care, biography work, interview techniques, transcribing and writing. Volunteers interviewed a patient and developed a written narrative from the interview. Volunteers completed a questionnaire before training and were interviewed at the end of the project. The interviews were audiotaped, transcribed, and evaluated using descriptive and qualitative content analysis.
RESULTS: Patients provided positive feedback from the intervention. Volunteers felt that their involvement was personally rewarding and were moved by the courage and confidence of the patients. There were no systematic problems or negative experiences reported neither by volunteers nor by patients.
CONCLUSIONS: We found the use of volunteers for biography work with patients in palliative care feasible and effective in this study. Volunteers needed supervision and ongoing support in providing this intervention.
The objective of this descriptive article is to provide a background of current research and data on advance care planning. Additionally, a proposed and detailed education initiative for increasing completion and understanding of advance care planning documents is presented.
Death and dying are two core aspects of medicine that we feel are often neglected at medical school. Here, we present our views on end-of-life teaching thus far, and our opinions on how the medical school curriculum could be improved.