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Recommendations about training in palliative care in nursing degree of the Spanish Palliative Care Nurses Association

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3Recommendations about training in palliative care in nursing degree of the Spanish Palliative Care Nurses Association

AUTHORS INDEX 5

PROLOGUE 7

I. JUSTIFICATION 9

II. NURSING COMPETENCES IN PALLIATIVE CARE 17 Objectives Competences to acquire

III. CONTENTS PROPOSAL FOR THE COURSE OF PALLIATIVE CARE 23

IV. PROFESSOR’S PROFILE 35

EPILOGUE 39

SUMMARY


AuthorsIsidro García SalvadorCoordinator. Hospital Universitario Dr. Peset. Valencia

Pilar Vallés MartínezPalliative Care Unit. Área de Gestión Sanitaria del Campo Gibraltar. Algeciras

Lourdes Guanter PerisInstituto Catalán de Oncología. Barcelona

Luis Utor PonceHomecare Support Team. Ceuta

María Paulina Pérez YusteHospital Los Montalvos. Complejo Hospitalario. Salamanca

Natalia López-Casero BeltránPalliative Care Unit. Hospital Mancha Centro Alcázar de San Juan. Ciudad Real

Vicente Robles AlonsoHomecare Support Team. Área de salud de Plasencia. Servicio Extremeño de Salud. Centro Universitario de Plasencia. Universidad de Extremadura

Pilar Campos MonfortPalliative Care Hospital Laguna. Madrid

Elena Chover SierraHospital General Universitario de Valencia. Part-time professor. Facultat d’Infermeria i Podologia. Universitat de Valencia

Teresa Plaza Escribano Our Lady's Hospice & Care Services-Harold´s Cross. Dublin, Ireland

Francisca Rosa Jiménez LópezUniversidad de Almería

AUTHORS INDEX

English translation has been made by:

Elena Chover SierraPilar Chover Sierra

6 Recommendations about training in palliative care in nursing degree of the Spanish Palliative Care Nurses Association

External reviewersMaría Paz Miguel Vázquez Hospital universitario de Burgos

María Ángeles Martín Homecare Support Team Mérida. Servicio Extremeño de Salud

Encarnación Chisbert Alapont Hospital Universitario Dr. Peset. Valencia

Marisa de la Rica Escuin Instituto de Investigación Sanitaria de Aragón. Universidad de Zaragoza

Ana María Tordable Ramírez Gerencia Asistencial de Atención Primaria del Servicio Madrileño de Salud

María José Cabañero Martínez Universidad de Alicante

Ana Carvajal Valcárcel Universidad de Navarra

Miguel Duarte Rodríguez Enfermero Gestor de Casos. Distrito de Atención Primaria de Sevilla

Julia Frasquet Morant Palliative Care Unit. Hospital Universitario Dr. Negrín. Las Palmas de Gran Canaria

Ángel López Triguero Servicio de Hospitalización a Domicilio y Cuidados Paliativos del Hospital do Salnés (Vilagarcía de Arousa), EOXI de Pontevedra e O Salnés

María Arantzamendi Solabarrieta Universidad de Navarra. Instituto Cultura y Sociedad. Programa ATLANTES: Dignidad humana, enfermedad avanzada y cuidados paliativos. Pamplona

Eva Abad Corpa DG Asistencia Sanitaria, Servicio Murciano de Salud / Facultad de Enfermería, Universidad de Murcia

Amor Aradilla Herrero Profesora Titular Enfermería. Profesora de la asignatura Enfermería en Cuidados Paliativos. Escuela Universitaria de Enfermería Gimbernat (adscrita a la UAB)

Cristina Monforte Royo Directora Departament d’Infermeria. Vicedecana Facultat de Medicina i Ciències de la Salut. Universitat Internacional de Catalunya


This document is the outcome of the work done by the training group of the Spanish in Palliative Care Nurses Association (AECPAL).The objective of this project, as a result on the consensus of experts in palliative care as a scientific society, has been to develop a document that can guide future nursing professionals in the training given in universities.From AECPAL, we consider as necessary the acquisition by nurses of the basic skills in palliative care in their university education. This training is highly recommended as an independent compulsory subject to be taught by teachers who have previously acquired these competences.Based on the existing information in the scientific literature, in our professional experience and in a deep reflection, in the following document we have elaborated this proposal both of the competences to be acquired by the students, and of the contents to be developed in this formation. Finally, we offer some notes on the profile of the teaching staff in palliative care.I would like to thank the members of the training group for their dedication and perseverance in this work. I also extend mi appreciation to external reviewers who have contributed with very interesting reflections and suggestions, which have helped us to enrich the document that we present below.

PROLOGUE

Isidro García Salvador AECPAL’s President


Chapter IJustification

Isidro García Salvador, Pilar Vallés Martínez

Chapter I2. Justification


Caring people with advanced disease and in end-of-life stages, as well as the attention to the needs of their families continues to pose considerable challenges, mainly, the poor training in palliative care of health professionals, the insufficient communication skills and the still mistaken consideration of death as a therapeutic failure1-3.The nursing contribution from a biopsychosocial and spiritual approach that guarantees a compre-hensive care of the patient and their family/caregivers has little visibility in the healthcare setting. However, we must not forget that nurses have a range of knowledge appropriate to their discipline, a methodological strategy that supports the planning of their interventions, a deontological code and a legal framework that guarantees their actions4, 5.Given the increasing complexity of the care required by people with advanced disease and / or end of life, along with the variability of professionals involved in the care process, it is necessary to clarify the training and professional nursing role in palliative care setting6. The Spanish Nursing Association in Palliative Care (AECPAL), since its inception in 2005, promulgates the need to develop its own doc-trinal body and a specific training curriculum in palliative care in Nursing. It also defends as a guiding principle that the competences for professional practice are the result of theoretical training and clinical practice; consequently, it is stablished constant feedback between theory tuition (basic, inter-mediate and / or advanced level) and palliative care, as well as the progress of knowledge based on practice and the application of those skills in such practice. The current scenario in which palliative care is developed in Spain faces a lack of management of specific training of health professionals, so that academic regulation does not go hand in hand the social and health requirements2.Analyses carried out by different organisms show that Spain is one of the most ageing countries on the planet, and this will cause an increase chronicity, multimorbidity and disability in the population7-9. Three out of four deaths in the Spanish state are caused by the progression of one or more chronic health problems10. The provision of palliative care takes place at different levels in which diverse types of resources are included, to which patients do not always have access11. In fact, somes studies show that one out of every three patients admitted to acute care hospitals have palliative needs12-14. But only those who meet certain criteria of complexity could be treated and cared for by expert professionals who de-velop their activity on specific resources of palliative care. In these circumstances, it is common for any nurse, in the course of their professional activity to deal with people in end-of-life processes, in several healthcare settings. This is the reason why they should have at least a level of basic training in care palliative, acquired preferably during their university education.The experience acquired during the evolution of Palliative Care demonstrates that the education process in this field must begin during the degree and continue during the postgraduate programs for those nurses who wish to be specialized in the discipline. Furthermore, there must be the possibility of continuous ed-ucation to maintain updated knowledge and skills and ensure that professional performance is based on scientific evidence and adheres to the quality standards that patients with palliative needs deserve15.However, in Spain, it is not contemplated in nursing degree training that basic skills in palliative care are acquired as part of their basic curriculum15. This fact means that in the future, nursing professionals can not guarantee the right of any person to be cared for in advanced and end-of-life disease processes by competent and trained nursing professionals, being what any society needs and demands.A study was conducted in 112 Spanish university centers, both public and private, on Palliative Care training in Nursing degree in the academic year 2010-201116. This was the 2nd year of implementation

12

AECPAL. Grade training


of the new nursing degrees in Spain; until to that moment study plans were only implemented up to 2nd year. Such study showed that, although all of them presented in their curricula competencies in palliative care, only 49.1% of these centers evidenced them through a compulsory palliative care sub-ject. It should be considered that we cannot know if this training was provided in the contents of other more general subjects. This means that less than 50% of students could acquire basic skills in this field, directly as a part of a subject. Even though the rest of the students could have access to these compe-tences transversally through other more general subjects, a topic that seems important to emphasize as a scientific society is that, as long as a content as palliative care does not have its own subject, it does not have adequate visibility. The same study also highlighted a great variability in terms of the number of credits of the subject, although those of six credits predominated, especially in the subjects that were obligatory. With regard to the autonomous communities, important differences could be observed among them, with Spanish autonomous communities such as those in which there were not universities where palliative care course appeared as compulsory, as shown in Table I.

Table I. Features of the subject 'palliative care' among autonomous regions

Autonomous Region Number of centres Type of subject

Compulsory Optative

Andalucía 21 16 1

Aragón 4 0 0

Canarias 4 0 0

Cantabria 1 0 0

Castilla y León 10 5 1

Castilla La Mancha 4 0 1

Cataluña 19 3 5

Madrid 15 12 2

Navarra 2 0 1

Valencia 10 6 0

Extremadura 5 5 0

Galicia 8 4 0

Baleares 3 0 3

Rioja 1 1 0

País Vasco 2 0 1

Asturias 2 0 2

Murcia 4 3 1

Source: reference 16.



This existing difference among autonomous communities, and even within the same community, shows that there is not a single criterion neither on palliative care training in nursing education degree, nor on its teaching content of the same, due to the difference of existing credits for the same subject. Another study carried out later, in 201617, in 121 universities, faculties and schools described that only 47.9% of the universities taught the subject as mandatory. This fact shows that after the reconversion of the bachelor’s degree in nursing, there have not been significant changes as for the palliative care subject in the Faculties of Nursing in Spain. Furthermore, from AECPAL, as a scientific society, it has also been considered what should be the ideal profile of the faculty that imparts this subject in the universities. Its positioning is that to train in appropriate competencies based on clinical and scientific evidence, it is necessary that the teaching staff of the Palliative Care subject have clinical and scientific experience and specific com-petences in the subject, as well as evidence based practice and adequate scientific methodology. All these features will form an adequate teaching profile to instruct a quality teaching and adequate to the requirements that the university currently demands.On the other hand, we must not forget that the attitude and fear of death referred by the pro-fessionals themselves can condition the quality of their care for people with palliative needs18-20. Thus, their training in socio-emotional competencies for coping and accompaniment in the pro-cesses that take place in the final phase of life, is essential to provide quality care to both the patient and the family in these important moments.This training must therefore begin in undergraduate teaching, so that the future professional learns to know their own attitudes to death and faces them21, understanding, in addition, that it is part of our professional competence to help patients and their families in the end of life process. The training of professionals is, as we have mentioned, essential to provide quality care to both patient and family in the end-of-life process. In this sense, the EAPC (European Association for Palliative Care)22 establishes different levels of training in Palliative Care, with a basic level of training, aimed at any nursing professional, and for this reason it is recommended to be acquired during this for-mative period.In Spain, the strategy in Palliative Care of the National Health System23 also recommends this basic level to be addressed to all health professionals, given that there is no regulation that requires spe-cific training for them to work on specific resources of palliative care and also to the fact that not all patients with Palliative Care needs finally access these resources. In this same vein, AECPAL has positioned itself18 in its monograph about nursing skills in palliative care5.The compulsory nature of palliative care training in universities as proposed by EAPC22 and AECPAL5, is supported by several national and international studies carried out with students and nursing professionals, in which it is concluded that both manifest training deficits, and consequently demand greater preparation in order to offer an appropriate care of people who are at the end of their lives24-29.In a study carried out recently by the Spanish Association of Nursing Students (AEEE) in our country, 93.9% of the surveyed students considered that training in Palliative Care should be mandatory. In addition, 59.4% considered that all students should have practical internships in Palliative Care services30. It is thus remarkable that the Spanish nursing students, as well as those of other countries that have participated in similar studies25,26,30, affirm that they do not feel prepared to take care of people in end-of-life processes.

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This supports the idea that it is necessary to acquire the basic competences during undergraduate training, remembering the importance of including a specific subject of Palliative Care, which allows such acquisi-tion of competences, following the approaches of scientific societies5,22.In the USA, the American Nurses Association (ANA) and the Hospice and Palliative Care Nurses Asso-ciation (HPCNA) carried out a campaign in 2017 to contribute to the development of Palliative Care led by nurses. In this project they highlighted the need to include training in end-of-life care in the basic curriculum of the career31, to define the competences that nurses must have to care for the patient and their family during this process at the end of life32, and the need to develop clinical guidelines for those patients’ care33.In Spain, some studies have recently been developed to assess the level of knowledge in palliative care; a work in which different professionals from all over the country participated, who developed their activity in different levels of care, has shown that professionals refer to not having an adequate level of such knowledge, especially in regard to psychosocial aspects (and not so much to aspects of symptom management), although professionals who reported having both theoretical and practical training in palliative care showed a higher level of knowledge34,35.Another study36, conducted among nurses who looked after people at the end of their lives, in an acute care hospital showed that 88.5% admitted the need of a major training in Palliative Care. The authors of this study tried to measure basic attitudes, that is, the aim was not to know if they identified what their basic competences in palliative care were, but if they carried them out. When evaluating the practical implementation of this training in Palliative Care, it was found that although 50% had basic training, only 10.6% carried out non-pharmacological measures, 8.7% used symptomatic assessment scales, and only 18.3% made the patient participate in the decision making process. These results indicate the importance of acquiring attitudinal competences that allow the theoretical knowledge acquired to be put into practice. As we see, then, different research works carried out in our country, show this lack of training, es-pecially at the level of emotional attention to the patient and nursing management in the care of these patients37.After the review and justification of the previously mentioned points, the non-obligatory nature of the subject, the difference of criteria in terms of credits and contents, the greater demand of professionals and students and the difficulty in implementing the competencies in the healthcare practice acquired by professionals… It is reasonable that as scientific nursing society we proposed the elaboration of this document.On June 14, 2016, the AECPAL training group met for the first time, establishing as its main objective, the development of a project to include palliative care training in the undergraduate curriculum.At least two members of this training group prepared each of the parts in which the document was struc-tured. Subsequently, each of them was reviewed by its members. Finally, external professors and profes-sionals with extensive experience in palliative care carried out the last review of this current document.



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2. Gonzalez Lopez-Valcarcel B. Formacion y empleo de profesionales sanitarios en España. Un analisis de desequilibrios. Gac Sanit 2000;14(3):237-46. DOI: 10.1016/S0213-9111(00)71459-2.

3. Gomez Batiste-Alentorn X, Amblas-Novellas J. Manual de atencion integral de personas con enferme-dades cronicas avanzadas: aspectos clínicos. Madrid: Elsevier; 2015.

4. Gonzalez-Rincon M, Díaz de Herrera-Marchal P, Martínez-Martín ML. Rol de la enfermera en el cuidado al final de la vida del paciente crítico. Enferm intensiva 2018. pii: S1130-2399(18)30056-7. DOI: 10.1016/j.enfi.2018.02.001.

5. Codorniu N, Guanter L, Molins A, Utor L. Competencias enfermeras en cuidados paliativos. Madrid: So-ciedad Española de Cuidados Paliativos (SECPAL); 2013.

6. Codorniu N, Bleda M, Alburquerque E, Guanter L, Adell J, García F, et al. Cuidados enfermeros en Cuidados Paliativos: Analisis, consensos y retos. Index de Enferm 2011;20(1-2):71-5. DOI: 10.4321/S1132-12962011000100015.

7. Generalitat de Catalunya. Enquesta de salut de Catalunya. Període 2010-2014. 2012.8. IMSERSO. Informe 2010. Las personas mayores en España. Madrid: Ministerio de Sanidad, Servicios

Sociales e Igualdad; 2012.9. INE. Proyecciones de Poblacion 2012-2052. [citado 24 de mayo de 2017] Disponible en: http://www.ine.

es/prensa/np744.pdf10. McNamara B, Rosenwax LK, Holman CDJ. A Method for Defining and Estimating the Palliative Care Popu-

lation. J Pain Symptom Manage 2006;32(1):5-12. DOI: 10.1016/j.jpainsymman.2005.12.018.11. Grupo de Trabajo de la Guía de Practica Clínica sobre Cuidados Paliativos. Guía de practica clínica sobre

cuidados paliativos. Madrid: Servicio Central de Publicaciones del Gobierno Vasco; 2008.12. Díaz Ricos JC. Perfil del paciente con necesidades paliativas ingresado en un hospital de agudos. XI Jor-

nadas SECPAL. Valencia, 2015; Poster session, Abst. P66.13. Rodríguez-Calero MÁ, Julià-Mora JM, Prieto-Alomar A. Deteccion de necesidad de atencion paliativa en

una unidad de hospitalizacion de agudos. Estudio piloto. Enferm Clin 2016;26(4):211-64. DOI: 10.1016/j.enf-cli.2015.11.004.

14. Zertuche T, Güell E, Fariñas O, Ramos A, Gomez-Batiste X. Prevalence of advanced-terminally ill inpatients in an acute tertiary care hospital. 12th EAPC Congress Lisbon, 2011; Poster sessions, Abst. P238.

15. Agencia nacional de evaluacion de la calidad y acreditacion. Libro Blanco título de grado de Enfermería; 2004.16. Valles-Fernandez P, García-Salvador I. Formacion basica en cuidados paliativos: estado actual en las univer-

sidades de enfermería españolas. Medicina Paliativa. 2013;12(3): 111-4. DOI: 10.1016/j.medipa.2013.03.003.17. Valles P, Garcia I, Manzanas A. Formacion y cuidados paliativos en las universidades de enfermería españo-

las; 2016. VII Jornadas AECPAL. Madrid, 2016; Comunicacion oral.18. Aradilla-Herrero A, Tomas-Sabado J. Efectos de un programa de educacion emocional sobre la ansie-

dad ante la muerte en estudiantes de enfermería. Enferm Clin 2006;16(6):321-6. DOI: 10.1016/S1130-8621(06)71239-6.

19. Schmidt-RioValle J, Montoya-Juarez R, Campos-Calderon CP, Garcia-Caro MP, Prados-Peña D, Cruz-Quin-tana F. Efectos de un programa de formacion en cuidados paliativos sobre el afrontamiento de la muerte. Med Paliativa 2010;19(3):113-20. DOI: 10.1016/j.medipa.2010.11.001.

20. Hanzelikova Pogranyiva A, García Lopez MV, Conty Serrano MR, Lopez Davila Sanchez B, Barriga Martín JM, Martín Conty JL. Reflexiones de los alumnos de Enfermería sobre el proceso de la muerte. Enferm Global 2014;33:145-56.

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21. Arce C, García I, Guanter L. Enfermeras y auxiliares. En: Cuidados paliativos en oncología. Barcelona: JIMS; 1996.

22. De Vlieger M, Gorchs N, Larkin PJ, Porchet F. A Guide for the Development of Palliative Nurse Education in Europe; 2004.

23. Estrategia en cuidados paliativos del Sistema Nacional de Salud. Madrid: Ministerio de Sanidad, Política Social e Igualdad; 2011.

24. Kwekkeboom KL, Vahl C, Eland J. Companionship and education: a nursing student experience in palliative care. J Nurs Educ 2005;44(4):169-76.

25. Mallory JL. The impact of a palliative care educational component on attitudes toward care of the dying in undergraduate nursing students. J Profes Nursing 2003;19(5):305-12.

26. Mutto EM, Errazquin A, Rabhansl MM, Villar MJ. Nursing education: the experience, attitudes, and impact of caring for dying patients by undergraduate Argentinian nursing students. J Palliat Med 2010;13(12):1445-50. DOI: 10.1089/jpm.2010.0301.

27. White KR, Coyne PJ. Nurses’ perceptions of educational gaps in delivering end-of-life care. Oncol Nurs Fo-rum 2011;38(6):711-7. DOI: 10.1188/11.ONF.711-717.

28. Marchan Espinosa S. Afrontamiento del profesional de enfermería ante la muerte de pacientes, en unidades de paliativos y oncología. Nure Investigacion 2016;13(82):1-12.

29. Jors K, Seibel K, Bardenheuer H, Buchheidt D, Mayer-Steinacker R, Viehrig M, et al. Education in end-of-life care: What Do Experienced Professionals Find Important? J Cancer Educ: the official journal of the Ameri-can Association for Cancer Education 2016;31(2):272-8.

30. Sanchez Ruano R. Encuesta realizada por la Asociacion Estatal de Estudiantes de Enfermería. La vocacion de cuidar en el grado universitario. XII Congreso Internacional de SECPAL. Vitoria 2018. Ponencia, mesa 16.

31. Kirchhoff KT, Beckstrand RL. Critical care nurses’ perceptions of obstacles and helpful behaviors in provid-ing end-of-life care to dying patients. American journal of critical care: an official publication. Am J Crit Case 2000;9(2):96-105.

32. American Association of Colleges of Nursing. Peaceful death: recommended competencies and curricu-lar guidelines for end-of-life nursing care [citado el 4 de abril de 2017].

33. McClement SE, Degner LF. Expert nursing behaviors in care of the dying adult in the intensive care unit. Heart & Lung - The Journal of Acute and Critical Care. Heart Lung 1995;24(5):408-19.

34. Chover-Sierra E, Martínez-Sabater A. Utility of social networks and online data collection in nursing re-search: Analysis of Spanish nurses’ level of knowledge about palliative care. PLoS One 2018;13(5):e0197377. DOI: 10.1371/journal.pone.0197377.

35. Chover-Sierra E, Martínez-Sabater A, Lapeña-Moñux YR. Knowledge in palliative care of nursing profes-sionals at a Spanish hospital. Rev Lat Enfermagem 2017;25:e2847. DOI: 10.1590/1518-8345.1610.2847.

36. Garcia I. Capacitacion y necesidades formativas basicas en cuidados paliativos de Enfermería en Hospital de Agudos. XI Jornadas SECPAL. Valencia 2015, Comunicaciones orales, mesa 1.

37. Arantzamendi M, Addington-Hall J, Saracibar M, Richardson A. Spanish nurses’ preparedness to care for hospitalised terminally ill patients and t.heir daily approach to caring. Int J Palliat Nurs 2012;18(12):597-605. DOI: 10.12968/ijpn.2012.18.12.597.

Chapter IINursing

competences in palliative care

Lourdes Guanter Peris, Luis Utor Ponce

Chapter IINursing competences in palliative care


Competence can be understood, in the field of responsibility of professional practice, as the delimita-tion of the field of action of a professional group, thus differentiating it from other professional groups. From this perspective, competencies are a frame of reference, standards or standards that guide the practice, common to all professionals of a given discipline and that allow to establish the area of responsibility, commitment and the guarantee of the service that each profession offers to society1.Nurses must be able to demonstrate the ability to observe, evaluate, instigate a response to the needs of the patient and evaluate its success or failure in all cases and at all levels according to experience and training2.Students require, for their functioning and socio-labor integration, to acquire certain skills and abilities, both instrumental, interpersonal and systemic. These competences become a key element of university learning that, in addition to the mastery of their academic specialty, incorporates a wide range of competences that enrich them as a person and as a professional future. Every nurse should receive training in the skills, attitudes and basic knowledge described in the course of their under-graduate academic education. The competences described should be considered when developing the formative curricula of Nursing Degree, according to criteria of the different Universities.The implementation of specific content of Palliative Care is a need that is supported by the lack of preparation of health professionals for the care of patients and family members who face a situation of advanced disease and / or end of life, death and duel. There is sufficient evidence of effectiveness and efficiency on the impact of palliative care, as it is shown in several scientific studies.Faced with these challenges, nursing professionals require training based on their level of interven-tion in patients in a palliative situation, but must begin in the Bachelor’s degree, as a basic level train-ing3-5. These skills’ acquisition will allow them to offer patients comprehensive care of quality, safety and confidence to manage the clinical situations that are attended from palliative care, as well as those situations that are also experienced outside of specialized environments. Every day the nursing professionals attend end-of-life situations in generalist units and even in the emergency room and critical care units. These professionals must be prepared to provide quality care at those times, and for this reason they need to have at least a basic training in palliative care.From the Spanish Association of Nursing in Palliative Care it is proposed as a recommendation that Palliative Care be incorporated into the Curriculum of Nursing Degrees as a compulsory subject, of 6 ECTS credits, in the 3rd year. It is a priority that they have acquired basic skills in communication, bioethics, in addition to having had practical training experiences that allow obtaining a broad and holistic perspective of the patient and their environment and increase their confidence in the ability to care for the patient.

1. OBJECTIVES

The objectives, pursued with this basic level of knowledge skills and attitudes are the following2: – To know, to identify and to understand the situation of advanced disease and / or end of life. – To describe the fundamental principles and concepts of palliative care. – To acquire knowledge, skills and attitudes necessary for the care of patients in situations of ad-

vanced disease and / or end of life to increase their quality of life and better coping with the disease process and end of life.



– To continuously assess the basic needs of palliative patients, planning, executing and evaluating the relevant care plans.

– To know the essential interventions that the nurse performs in situations of advanced disease and end of life and that contribute to improving the life experience and the quality of life.

– To incorporate the patient and the caregiver environment in the nursing discourse in the care pro-cess and in decision making.

– To know and incorporate the bases of communication in the nurse-patient relationship. Detect and assess the psychological impact of illness, death and grief. Detect and assess the symptoms pre-sented by patients in advanced and / or late life, as well as intervene in the main processes.

– To identify the psycho-emotional, socio-family and spiritual dimensions of the patients and their en-vironment in the care processes in order to improve the quality of life and coping with the process of death.

– To explore the personal, social and cultural beliefs and values of the family. – To know the bioethical principles and their involvement in decisions at the end of life. – To integrate into the care plans the individuality and the right of autonomy from a multidimensional

perspective in order to promote the well-being and quality of life of the person with advanced dis-ease.

2. COMPETENCES TO ACQUIRE

At the end of the training period, nursing students must be able to2: – Describe the general principles of advanced disease and / or end of life and of palliative care. – Implement teamwork and to interact at different levels of palliative care. – Carry out a care plan taking into account the psycho-emotional, socio-family and spiritual dimen-

sions of the patients and their families. – Assess the emotional, social and spiritual impact on patient and family of physical symptoms and the

overall process of the disease. – Identify the main symptoms, as well as the specific characteristics presented by patients in situa-

tions of advanced disease. – Know the existing resources for the derivation of highly complex patients. – Know the management and coping of the mourning processes of the patient and the family, taking

into account the specificities in the different stages of life. – Take into account the ethical aspects in taking clinical decisions at the end of life. – Develop interpersonal and communication skills that facilitate relationships with the healthcare team

and that allow for an attention centered on the wishes, values and needs of the patient at the end of life and his family.

Chapter IINursing competences in palliative care


BIBLIOGRAPHY

1. Juvé ME, Huguet M, Monterde D, Sanmartín MJ, Martí N, Cuevas B, et al. Marco teorico y conceptual para la definicion y evaluacion de competencias del profesional de enfermería en el ambito hospitalario. Parte I. Nursing (Ed. española) 2007;25(4):56-61. DOI: 10.1016/S0212-5382(07)70907-X.

2. Codorniu N, Guanter L, Molins A, Utor L. Competencias enfermeras en cuidados paliativos. Madrid: So-ciedad Española de Cuidados Paliativos (SECPAL); 2013.

3. Radbruch L, Payne S. White paper on standards and norms for hospice and palliative care in Europe: Part 1. Eur J Palliat Care 2009;16(6):278-89.

4. Radbruch L, Payne S. White paper on standards and norms for hospice and palliative care in Europe: Part 2. Eur J Palliat Care 2010;17(1):22-33.

5. De Vlieger M, Gorchs N, Larkin PJ, Porchet F. A guide for the development of palliative nurse education in Europe. Palliative nurse education: Report of the EAPC Task Force. Milan: EAPC Onlus, 2004. www.eapcnet.org/download/ forTaskforces/NurseEducationGuide.pdf (last accessed 10/02/2019).

Chapter IIIContents proposal

for the course of palliative care

María Paulina Pérez, Natalia López-Casero Beltrán, Vicente Robles Alonso, Francisca Rosa Jiménez López

Chapter III4. Contents proposal for the course of palliative care


SUBJECT: PALLIATIVE CARE NURSING

Mandatory basis

6 ECTS Credits

From 3rd degree’s course

MODULE 1. PALLIATIVE CARE PRINCIPLES

Unit 1: Society attitude before death.1.1. Death and the human being.1.2. Attitudes before death throughout history.1.3. Reflections on death at present.1.4. The taboo of death and the stigmatization of palliative care.1.5. The place of death: society, institution and palliatives. Challenges and

debates around fair dying (dignified death).

Unit 2: Definition of Palliative Care, philosophy and basic principles.2.1. History of Palliative Care.2.2. Concept of caring and alleviating.2.3. Definition of Palliative Care.2.4. Philosophy and basic principles.

Unit 3: Concept of advanced disease.3.1. Criteria for advanced and / or end of life stage.3.2. Conceptual transitions in palliative care.3.3. Pathways in patients with progressive chronic disease.3.4. Relevant concepts: quality of life, suffering, autonomy, dignity.



Unit 4: Levels of palliative assistance.4.1. Levels: basic, intermediate and specific.4.2. Complexity criteria.4.3. Resources organization.4.4. Types of organisational structures specific to Palliative Care.

Unit 5: Palliative Care Teamwork.5.1. Technical dimension/level.

5.1.1. Concept of Multidisciplinarity, interdisciplinarity, pluridisciplinarity and transdisciplinarity.

5.1.2. Training in Palliative Care: learning a way of working and understanding caregiving.

5.2. Organizational dimension/level.5.2.1. Formal aspects in the organization: objectives.5.2.2. The work meeting as an organization space.5.2.3. Decision making in teams: leadership and democracy.

5.3. Social dimension/level.5.3.1. The temporary dimension in the Palliative Care teams. Qualitatively

and quantitatively different time.5.3.2. Communication and transmission of information (among units and

with patients and families).5.3.3. Intangible aspects of the team organization: care management.5.3.4. Conflicts: problem or factor of equipment evolution?

Unit 6: Professional nurses’ role.6.1. Nurse’s Competences in Palliative Care.6.2. Nurse’s role within the interdisciplinary team.

MODULE 1: 8 HOURS OF ATTENDANCE



MODULE 2. COMUNICATION SKILLS

Unit 7: Emotional care of patient and family.7.1. Reactions and adaptive process to advanced disease.

7.1.1. Phases of the adaptive process.7.1.2. Causes of suffering.7.1.3. Evaluation of the reactions.7.1.4. Evaluation of coping resources.

7.2. Handling difficult questions and difficult situations.7.2.1. What we mean by difficult communication.7.2.2. Active listening.7.2.3. How we should act. What to say and not to say.

7.3. Caregiver compassion fatigue.7.3.1. Definition.7.3.2. Causes.7.3.3. Identification and approach.

7.4. The conspiracy of silence.7.4.1. Definition.7.4.2. Factors that influence the appearance.7.4.3. Prevention and identification.7.4.4. Approach.

7.5. Management and identification of grief.7.5.1. Definition.7.5.2. Grief phases.7.5.3. Nursing assessment.7.5.4. Intervention and support, predictive factors of complicated grief and referral.

7.6. Stress of Palliative Care professionals.7.6.1. Definition.7.6.2. Internal and external stressors. Reactions.7.6.3. Stress in the face of death.




MODULE 3. SYMPTOMATIC MANAGEMENT AND SPECIFIC CARE PLANS

Unit 8: Complete clinical record, integral and interdisciplinary assessment.8.1. Patient-family unit assessment.8.2. Disease assessment.8.3. Patient assessment.8.4. Socio-familiar assessment.

Unit 9: Nursing diagnoses and care plans.9.1. Nursing diagnoses prevalent in Palliative Care.9.2. NIC and NOC interrelations.9.3. Evaluation and clinical records.

Unit 10: Symptomatic Management in Palliative Care.10.1. General principles of symptoms’ control.10.2. Most common symptoms associated with advanced disease. 10.3. Scales for assessment, evaluation of symptoms and needs.

Unit 11: Pain management.11.1. Suffering and pain.11.2. Types of pain.11.3. Valoration and assessment.11.4. Analgesic scale (WHO).

Unit 12: Management of Gastrointestinal Symptoms.12.1. Caquexia-anorexia.12.2. Nausea and vomiting.12.3. Constipation and diarrhea.12.4. Dysphagia.12.5. Hiccup.



Unit 13: Management of Respiratory Symptoms.13.1. Dyspnea.13.2. Cough.13.3. Rattles.13.4. Hemoptysis.

Unit 14: Management of genito-urinary symptoms.14.1. Hematuria.14.2. Urinary incontinence.14.3. Bladder pain and spasm.

Unit 15: Management of neuropsychiatric symptoms. 15.1. Delirium.15.2. Anxiety and depression.15.3. Sleep disorders.15.4. Seizures.

Unit 16: Management of systemic symptoms. 16.1. Asthenia.16.2. Anemia.16.3. Fever.

Unit 17: Management of dermatological symptoms.17.1. Pruritus.17.2. Lymphedema.17.3. Xerosis.17.4. Jaundice.17.5. Fistula.



Unit 18: Main routes of drugs’ administration.18.1. Oral.18.2. Sublingual.18.3. Rectal.18.4. Intramuscular.18.5. Intravenous.18.6. Transdermal.

Unit 19: Management of subcutaneous route.19.1. Types of administration.19.2. Common drugs, interactions. 19.3. Hypodermoclysis.

Unit 20: Management and Skin Care.20.1. Tumor ulcers.20.2. Pressure ulcers.20.3. Fistula.

Unit 21: Management and Care of the mouth.21.1. Xerostomia.21.2. Dirty mouth.21.3. Painful mouth.21.4. Mucositis and mycosis.

Unit 22: Management and Nursing care in palliative emergencies.22.1. Spinal compression syndrome.22.2. Superior vena cava syndrome.22.3. Hypercalcemia.22.4. Massive hemorrhage.22.5. Caregiver compassion fatigue.



Unit 23: Management and nursing care in last days of life.23.1. Skin care.23.2. Elimination.23.3. Mouth care.23.4. Death rattle.23.5. Family attention.

Unit 24: Management of spirituality and spiritual needs.24.1. Definition.24.2. Spiritual needs.24.3. Accompaniment and spiritual support.

Unit 25: Quality of life.25.1. Definition.25.2. Needs of people in palliative processes.25.3. How to measure the quality of life. Measurement scales.25.4. Quality of life assessment.




MODULE 4. LEGISLATION AND BIOETHICS IN END-OF-LIFE CARE

Unit 26: Ethical and legal aspects.26.1. Legal aspects.

26.1.1. Legislation in force in the framework of end of life. Law 41/2002 (regulatory of the autonomy of the patient and of rights and obligations in matters of information and clinical documentation). Autonomic regulation laws of the end of life process “dignified death”. Legal aspects related to the death of the patient.

26.1.2. Deontological Code of Nursing in Spain.26.2. Bioethics and end of life.

26.2.1. Bioethical models and their attitude towards the end of life.26.2.2. Deliberative Method. (Theoretical and practical management of

ethical dilemmas).26.2.3. Advance decisions planning process. Nurse’s role.26.2.4. Ethical scenarios of clinical decisions at the end of life. Palliative

sedation. Informed consent as a process and its particularities in this context (Implicit, explicit, delegated...).




SEMINARS AND WORKSHOPS

Methodology: simulated cases and role playing in small groups of students (15 approx.). Previous readings as directed work that allow the debate and the joint reflection in the face-to-face sessions. It is mainly about deepening aspects previously discussed in the theoretical sessions.

– Nurse’s comprehensive assessment of patient-family. – Realization of specific care plans. – Communication of bad news. – Communication with the patient: Counselling. – Spiritual needs. – Management of the subcutaneous route. – Decision making.

SEMINARS AND WORKSHOPS: 18 HOURS OF ATTENDANCE

60 hours of attendace; distributed as follows:

MODULE THEORETICAL LESSONS SEMINARS / WORKSHOPS

Palliative Care principles 8 hoursCommunication 8 hours 4 hoursSymptoms’ management/Care plans 22 hours 10 hoursBioethics 4 hours 4 hours

90 hours of student work, devoted to different activities, such as: – Reading and analysis of diverse documents, provided by the teacher. – Assignments elaboration. – Independent study.

The evaluation and schedule system has to be done by the responsible professor.Finally, we recommend this training to be completed with a period of clinical trainship once the sub-ject has been developed in specific resources of palliative care. Nevertheless, if it is not possible in intermediate resources (Oncology, Hematology, Internal Medicine, Short stay units...).



BIBLIOGRAPHY

1. Universidad de Extremadura. Plan Docente de la asignatura “Cuidados paliativos”. Curso 2017/18.2. Universidad de Almería. Guía Docente de la asignatura “Cuidados de Enfermería en situaciones comple-

jas de Salud”. Curso 2017/18. 3. Codorniu N, Guanter L, Molins A, Utor L. Competencias enfermeras en cuidados paliativos. Madrid: So-

ciedad Española de Cuidados Paliativos (SECPAL); 2013.4. Grupo de Trabajo de la Guía de Practica Clínica sobre Cuidados Paliativos. Guía de practica clínica sobre

cuidados paliativos. Madrid: Servicio Central de Publicaciones del Gobierno Vasco; 2008.5. Grupo de Trabajo SECPAL “Trabajo en equipo”. Trabajo en equipo en Cuidados Paliativos: que dicen los

profesionales; 2014.6. SECPAL. Libro blanco sobre normas de calidad y estandares de cuidados paliativos de la Sociedad Eu-

ropea de Cuidados Paliativos. Madrid; 2012.7. Gomez-Batiste X, Porta J, Tuca A, Stjernsward J. Organizacion de servicios y programas de Cuidados

Paliativos. Madrid: Aran; 2005.8. Centeno C, Gomez M, Nabal M, Pascual A. Manual de medicina paliativa. 1.ª ed. Navarra: Ediciones Uni-

versidad de Navarra; 2009.9. Ministerio de Sanidad, Política Social e Igualdad. Estrategia en cuidados paliativos del Sistema Nacional

de Salud. Madrid; 2011.10. Valles Martínez MP, Casado Fernandez N, García Salvador I, Manzanas Gutiérrez A, Sanchez Sanchez L.

Grupo de planes de cuidados de la AECPAL. Planes de cuidados estandarizados de enfermería dirigidos a paciente y familia en procesos avanzados y terminales; 2011.

11. Porta J, Gomez-Batiste X, Tuca A. Control de síntomas en pacientes con Cancer Avanzado y Terminal: Madrid: Aran Ediciones; 2005.

12. Sanmartin J. Guías clínicas de Cuidados Paliativos. Madrid: Aran Ediciones; 2007.13. Gomez- Batiste X, Planas J, Roca J, Viladiu P. Cuidados Paliativos en Oncología. Barcelona: JIMS; 1996.14. Martínez MB, Monleon M, Carretero Y, García- Barquero MT. Enfermería en cuidados paliativos y al final

de la vida. Barcelona: Elsevier; 2012.15. Lopez E. Enfermería en cuidados paliativos. Madrid: Panamericana; 1998.

Chapter IVProfessor’s profile

Isidro García Salvador, Pilar Campos Monfort, Teresa Plaza Escribano

Chapter IV5. Professor’s Profile


Another issue that we also raised from society was to define what characteristics or requirements should have the teacher responsible of teaching of the subject of Palliative Care.We have not found bibliography about it. This led us to a reflective process and to define this profile ar-guing its characteristics. Subsequently, it was reviewed and discussed by the members of the group and later by a committee of experts composed of the external reviewers.Initially, we asked ourselves the questions

– Must this teacher be a nurse or not? – What level of training must he/she have? – Is clinical experience in palliative care necessary?

From our personal point of view, it is difficult for a professional who has not acquired the skills to carry out his/her work to train others to perform them. This does not mean that some content of the program can not be developed by another professional in the field of Palliative Care, but always under the professor’s recommendation. Our opinion, as a scientific society, is that the person in charge of this subject should be a nurse.Regarding the specific training in palliative care, our approach is that it should have at least 40 to 80 hours of basic training, although it would be advisable to have intermediate or advanced training in Palliative Care, since it is obviously difficult for someone to teach what he has not learned.On the other hand, can a nurse transmit the practical part of a clinical subject in which she/he has not faced end-of-life situations with both patients and families? Probably not, at least we think so. At the end of life, complex situations arise and they must be handled in order to know them and be able to transmit them. Another question that we asked ourselves is how much time of clinical experience in palliative care would be necessary. We consider that a minimum of one year experience would be advisable.Therefore, the lowest profile that the suitable teacher should have according to AECPAL would be: a nurse with intermediate training and with at least one year of clinical experience in the field of pallia-tive care. In any case, the more clinical experience, education and research in this field the teacher would have, the better would be.


Throughout this document we have presented our proposal, in which we have tried to show what, from AECPAL, as a scientific society, we understand as desirable and recommendable so that nurses can offer quality care to people and their families when they need palliative care. However, we un-derstand the difficulties involved in modifying the curriculum.Both universities and scientific societies must contribute to improve the care of people with palliative needs; we must do so from collaboration and training. From our society we understand and support universities. We hope you read and understand our proposal. We also encourage these universities to overcome difficulties and those who do not have the subject, should make the effort to impart it. Our society is at their disposal.This document has been the result of the work between members of a scientific society and univer-sities: clinicians, teachers and researchers. We hope that it will be the beginning of a collaboration among all, to improve and unify the nursing degree formation in the universities. With this, we under-stand that we will improve the care of people who could need it and their families, not only at the end of life, but also needed in any chronic process and in all areas and levels of health care.

EPILOGUE

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