Eur J Pediatr DOI 10.1007/s00431-014-2304-8
ORIGINAL ARTICLE
Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy Francesca Rusalen & Anna Ferrante & Chiara Pò & Michele Salata & Caterina Agosto & Franca Benini
Received: 17 October 2013 / Revised: 10 February 2014 / Accepted: 24 March 2014 # Springer-Verlag Berlin Heidelberg 2014
Abstract Pediatric palliative care represents the ideal response to life-limiting and life-threatening diseases and requires a specific and multidisciplinary training. This study aims at evaluating in Italy the training programs offered in pain therapy and pediatric palliative care, the exposure, and the personal experience concerning end-of-life care management. The data have been obtained through a survey addressed to all the residents specializing in pediatrics in Italy. Three hundred forty-eight of 1,200 residents from 33 of the 41 schools of pediatrics existing in Italy responded to the questionnaire. One hundred seventy-four of them (50 %) declared they received training in end-of-life care at least once: 146 during their graduation course of medicine, 84 during the
pediatric residency, and 54 in both occasions. Sixty percent of respondents were present at one death at least, with an increasing percentage in the last years of residency (91.5 % in the fifth year) but only 12 % were directly involved in the management (36.2 % in the fifth year); 5.7 % managed at least one communication of death; 12.6 % followed sedo-analgesia protocols. Only 11 % of residents felt ready to face end-of-life care management. Conclusion: The training in end-of-life care in Italy is not currently satisfactory. Further efforts are therefore required to create a comprehensive and multidisciplinary training. Keywords Pediatric palliative care . Core competencies . Pediatric residency . Training . End-of-life care
Communicated by David Nadal Electronic supplementary material The online version of this article (doi:10.1007/s00431-014-2304-8) contains supplementary material, which is available to authorized users. F. Rusalen (*) : C. Pò : C. Agosto : F. Benini Pediatric Pain and Palliative Care Service, Department of Pediatrics, University of Padua, Via Giustiniani, 3, 35127 Padua, Italy e-mail: [email protected] C. Pò e-mail: [email protected]
Abbreviations ONSP National Observatory of Residents Specializing in Pediatrics USA United States of America NSAIDs Nonsteroidal anti-inflammatory drugs EAPC European Association of Palliative Care UK United Kingdom
C. Agosto e-mail: [email protected] F. Benini e-mail: [email protected] A. Ferrante Unit of Epidemiology and Community Medicine, Department of Pediatrics, University of Padua, Padua, Italy e-mail: [email protected] M. Salata National Observatory of Residents Specializing in Pediatrics (ONSP), Roma, Italy e-mail: [email protected]
Introduction In recent years, there has been a sharp reduction in the infant mortality rate, but at the same time, medical and technological progress has led to an increase in the spread of many diseases, once rapidly fatal, which have no reasonable hope of recovery. The welfare’s answer to life-limiting and life-threatening diseases is represented by palliative care, which provides total care of children and their families and ensures that the quality of their life is preserved [2, 4, 9, 14, 20, 29].
Eur J Pediatr
Pediatric palliative care involves peculiar and specific competencies and skills that require a specific training: it is provided together with the normal treatment in a common program, accompanying the patients and their families for many years; it is directed to patients who often suffer from multiple diseases and need an interdisciplinary approach; it involves choices and solutions that require expertise, analysis, and interaction abilities [11–13]. In 2000 in the USA, world organizations such as the American Academy of Pediatrics [1] already recommended that physicians, including pediatricians, were ensured appropriate training and that they were confident in administering palliative care and in managing end-of-life care [1]. Therefore, in recent years, various studies have measured the preparation of residents and physicians [17, 19, 22, 24, 25, 27, 28] and the quality of the service they offer [8, 18], laying the foundations for several experimental projects in palliative care training [5, 21, 25, 30, ]. Nevertheless, at the moment, the competencies and the awareness of the European residents on this issue are often not well defined.
Objective The objective of the present study is to assess the level of preparation and the involvement of the residents in the field of pediatric palliative care. In particular, the study aims at defining: (1) the level of knowledge reached in pain therapy and pediatric palliative care, (2) the skills gained in the management of end-of-life care, and (3) the reactions related to the concrete experiences in life-limiting and life-threatening diseases and pain therapy management.
Materials and methods Pediatric residency in Italy Pediatric residency in Italy includes 41 graduate medical education programs each referred to a medicine university and affiliated to a pediatric hospital, covering the whole country. Residency is structured into a 5-years period, during which interns experience general pediatrics and pediatric subspecialties for both out- and in-patients with an increasing level of autonomy in diagnosis and treatment. A theoretical training is also provided. A non-profit organization, the National Observatory of Pediatric Residents (ONSP), maintains a network connecting pediatric residents all over Italy, monitoring the training courses and promoting their development.
The project and the questionnaires The Veneto Regional Centre for Pain Therapy and Pediatric Palliative Care cooperated with the ONSP in the development of the project. The questionnaire we created was based on existing experiences, from which the main themes of the survey were selected: quantification of participation and involvement in dying process [17]; received training for each end-of-life care responsibility [17]; self-assessment of confidence in various aspects of end-of-life care responsibility [8, 27]; psychological/emotional comfort related to end-of-life care experience and interest in training [16, 19, 27]. The first questionnaire (ESM 1), addressed to a contact person for each pediatric university hospital, collected information about the number of residents enrolled for each of the 5 years of residency, including doctors who worked elsewhere or abroad. The second questionnaire (ESM 2), addressed specifically to each resident, included 17 questions (open and closed) focusing on: personal details; training received about palliative care during the graduation course of medicine and about pediatric palliative care and pain therapy during the pediatric residency; clinical and personal experience in end-of-life care management (communication, use of medications, corpse management, after-death interview); personal reactions (selfconfidence, fear, and emotions related to end-of-life experience; interest in additional training). Unlike other studies, we decided to devote some open questions to the emotions with the aim to more precisely direct further training programs. The survey In October–November 2011, the questionnaires were sent by e-mail to each ONSP contact person, together with a document which explained the objectives and methods of the survey: the first questionnaire was intended to be completed and sent back directly by a contact person of each pediatric universitary hospital, the second questionnaire was sent individually to each resident to be completed and sent back by him/her. The collection of data continued until June 2012. Three emails were sent every month as a reminder to every ONSP contact person who failed to return the questionnaires back. Data analysis The data were computerized using the program Microsoft Excel 2003 and a univariate descriptive analysis was carried out using the statistical package SAS Enterprise Guide 4.2. The responses to the open questions (e.g., the part of “personal reaction” in the questionnaire) were evaluated and qualitatively grouped.
Eur J Pediatr Table 2 Respondents who received training and duration of training program during the graduation course of medicine and during the pediatric residency
Results Personal details Three hundred forty-eight (29 %) of 1,200 residents have responded to the questionnaire, sending information from 33 of 41 pediatric university hospital, variously distributed in the country (Table 1). About 33 university children’s hospitals responded to the questionnaire. In relation to the year of residency, the questionnaires have been answered by 40 % of the all first-year residents, 35 % of the all second-year residents, 28 % of all third-year residents, 44 % of the all fourth-year residents, and 21 % of the all fifth-year residents. The majority of respondents were females (287 subjects— 82.4 % of the sample). Their age ranged from 24 to 45 years (average 29.4 years). Six of the residents also had a Master’s Degree and five had a degree in another medical specialty. Overall, 174 respondents (50 %) declared they received some type of training in end-of-life care at least once during medicine graduation/pediatric residency. Two hundred twenty received training about pain management during the residency.
Training during the graduation course of medicine Forty-two percent of respondents received training in end-oflife care management during their graduation course of medicine (Table 2), mostly during optional courses or during anesthesia or internal medicine courses (Table 3). Eightythree percent of them were offered a training consisting of a didactic meeting lasting less than 5 h during a 6-years graduation course (Table 2). The training mainly concerned ethical issues (80 %) and less frequently clinical (45 %) and legal (36 %) issues.
Training during the pediatric residency Only 4 of 33 pediatric university hospitals (12 %) included in their residency training program attendance at the Pain Therapy and Pediatric Palliative Care Service.
Table 1 Universitary children’s hospital: location Universitary children’s hospital: location
Total
Northern Italy Southern Italy Central Italy Total
204 81 62 348
a. Training during the graduation course of medicine Training in end-of-life care (% of total) Graduation course of medicine 146/348 (42 %) Duration of training 5 h 17 % b. Training during the pediatric residency Pediatric residency Training in pediatric end-of-life care 84/348 (24 %) (% of total) Duration of training 5 h 28 % Training in pediatric pain management 220/348 (63 %) (% of total) Duration of training 5 h 26 %
Training about assessment and management of pediatric pain During residency, 63.5 % of respondents received training in assessment and management of pediatric pain, 54 % of them were given training during residency courses or, less frequently, through seminars; however, only 26 % received a training longer than 5 h (Table 2). Training about pediatric end-of-life care During the residency training in pediatrics 24 % of residents received training in the approach/management of pediatric end-of-life care, mostly during subspecialty lectures (Tables 2 and 3). In 11 pediatric university hospitals (33 %), the topic had never been introduced. During residency, the number of hours devoted to training was low (Table 2). The training mostly focused on clinical issues (87 %), on ethical issues, (63 %) and less frequently on legal issues (18 %). Optional training about end-of-life Of the residents, 16.7 % declared that they compensated for lack of training participating to conferences and/or conventions. The percentage of participation increased following the residency years and reached its maximum among the fifth-year residents (29 %). Nine percent of respondents presented one or more reports about this issue at some conventions. Experience Pain management Forty-two percent of residents replied to the question concerning the use of opioids for pain therapy writing that they had prescribed opioids for pain management;
Eur J Pediatr Table 3 Occasions in which a training in end-of-life care was proposed during the graduation course in medicine and during the pediatric residency Occasion Medicine graduation Optional courses course Internal medicine lessons Anesthesia lessons Bioethic lessons Legal medicine lessons Others Pediatric residency Optional courses General pediatrics lessons Specialized pediatric lessons Bioethic lessons
Number of subjects 45 16 26 12 14 9 31 21 39 4
half of them only prescribed major opioids, and 25 % major opioids and/or mild opioids. Six percent answered indicating non-opioid drugs (NSAIDs, anesthetics). This percentage increased with the year attended, reaching 53 % among the residents of the fifth year. Of the residents, 12.64 % followed sedo-analgesia protocols. End-of-life care Sixty percent residents witnessed the death of at least one child; as expected, in the last years of residency, the percentage increase considerably reaching 91 % among the students of the fifth year (Table 4). The residents witnessed a total of 834 deaths that occurred in different wards, more frequently in Neonatal Intensive Care, Pediatric Intensive Care, and HematoOncology (Table 5). Sixty-four percent of residents participated to communication of end-of-life care and death. Only 6 % managed communication directly and, among them, only 36 % were trained for this task. Seventy-eight percent did not know the organizational procedures for corpse management (Table 4). Twenty-six percnet residents had a contact with the parents some time after the death of their child, as a result of personal initiative or after a request from the parents.
role of 9 % of respondents. Only for a small proportion (6 %), the experience of death did not have any impact. Attended training Of the residents, 98.5 % believed that the training in end-of-life care should be an integral part of the Pediatric Residency Training Program; 98 % of respondents found the participation to training courses in on this topic useful for their clinical practice. Forty-three percent thought that it is important to be properly prepared and to receive specific training, which is considered an integral part of the professional competencies of a pediatrician, and 11.5 % of residents found it relevant to be ready to deal with high emotional impact situations. Only 11 % felt professionally prepared to deal with end-oflife care, a percentage which did not increase significantly among the respondents attending the last years of residency (Table 4.)
Discussion The theme of experience and training of residents in pediatric palliative care has already been treated in some studies, which have laid the foundations for the implementation of different training and education projects, especially in the USA. Similar studies are not currently available in Europe or in Italy, where recently a specific law by the Ministry of Health (Law 38/2010) has established the importance of continuing education in pediatric palliative care [20]. It has also identified regional/super regional pediatric palliative care centers as responsible for palliative care research and education. Starting from the data obtained in our survey, the Veneto Region Pediatric Pain and Palliative Care Center and the ONSP have analyzed the current Italian situation. According to the Recommendations of the European Association of Palliative Care (EAPC) for the Development of Undergraduate Curricula in palliative medicine at European medical schools, the organization of an educational program implies a multistep-approach [23]. General needs and problems
Personal reactions Fears and concerns The most frequent concern when confronted with death was much more linked to the emotional aspect and to clinical issues than to organizational or medical– legal issues (Table 6). Concerning the emotional response, witnessing a child’s death led 16 % of residents to approach similar cases more closely, while 4 % of residents reacted avoiding similar situations later. Experiencing the death of a child was a stimulus to enhance the study and search for clinical tools for 37 % of residents and it stimulated observations on ethical and spiritual matters and on the professional
The core curriculum definition implies identification of background. As described in the USA [15], also in Europe the number of children with “life-limiting conditions”is relevant and progressively increasing: a recent UK study has estimated a prevalence of 32 cases of 10,000 in 2009–2010 which is twice the previous estimate of 16 of 10,000 in 2007 [12]. In Italy, there are about 12,000 children with “life-limiting conditions”, with a mortality of 1,200/year [3]. The poor participation to this survey (only 29 % of the contacted residents) is a strong indicator of how the problem of pediatric palliative care is underestimated.
6 (7.3 %) 8 (11.4 %) 7 (11.6 %) 12 (13.5 %) 5 (11.1 %) 38 21 (25.6 %) 23 (32.8 %) 29 (48.3 %) 47 (52.9 %) 25 (55.5 %) 145 25 (30.5 %) 40 (57 %) 42 (60 %) 74 (83 %) 42 (93 %) 223 5 (6 %) 6 (8.6 %) 9 (15 %) 12 (13.5 %) 12 (26.6 %) 44
2 (2.4 %) 3 (4.3 %) 1 (1.6 %) 5 (5.6 %) 9 (20 %) 20
4 (4.9 %) 16 (22.8 %) 15 (25 %) 22 (24.7 %) 18 (40 %) 75
Residents ready to manage endof-life care Residents present at communication Sedo-analgesia protocols
Table 5 Deaths related to ward
Ward
Total
Neonatal pathology ward Intensive care ward Hematology–oncology Pediatric ward Not-specified ward abroad
217 207 198 117 62
Casualty ward Operating theater/surgical ward Total
30 3 834
Specific needs As already reported in international literature, experimenting the death of a child is not uncommon during the pediatric residency program: according to the data we collected, this event involved 60 % of respondents, with an average exposure ranging from 2 to 5.8 deaths per resident, which is comparable to previous surveys reporting 3.2–4.7 deaths per training program [16, 17]. Unlike previous studies, which reported a high percentage of deaths in intensive care [6, 17], our data show a homogeneous distribution of events between intensive care units (a total of 51 % of events) and other wards. This data demonstrates that the experience of death is common and not only limited to certain subspecialties.
3.5 2 1 2.9 5.2 3 (3.7 %) 6 (8.8 %) 2 (3.3 %) 15 (17 %) 17 (36.2 %) 43 4 2 3.4 5 5.8 82 70 60 89 45 348 1 2 3 4 5 Total
17 (21 %) 34 (50 %) 41 (68.3 %) 73 (83 %) 43 (91.5 %) 208
Average number of deaths for resident Average number of deaths for resident Total
Residents who were present at a death
Residents who managed a death
Goals and objectives
Year
Table 4 Experience of end-of-life care and death related to the school year attended
Direct management of communication
Knowledge of corpse management procedures
Opioids prescription
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Knowledge The training program in end-of-life care management was very deficient both during the graduation course of medicine and the pediatric residency. The training in assessment and management of pain involved a larger number of residents (63.5 %), but it also had a limited duration. This aspect confirms the need for vertical integrations and continuous medical education. Skills Seventy-nine percent of respondents did not know corpse management procedures; 57 % never prescribed opioids for pain control; 87 % never applied sedation–analgesia protocols in end-of-life care. Therefore, knowledge of the drugs used in pain control and treatment appeared far from optimal. Communication with the family at the time of death is almost exclusively entrusted to fully licensed physicians Table 6 Fears in the management of pediatric death
Types of fears
Total
Human/emotional aspect Clinical aspect Legal aspect Organizational aspect
292 107 53 53
Eur J Pediatr Fig. 1 General principles for a multi-step implementation of an Italian pediatric palliative care curriculum according with Recommendations of the European Association of Palliative Care (EAPC) for the Development of Undergraduate Curricula in palliative medicine at European medical school: It is necessary
(87 %); unlike other studies, this is seen as appropriate in 90 % of questionnaires [10]. In addition to a training gap, these data also suggest a deficit of progressive acquisition of autonomy by the residents in end-of-life care management. Attitudes From an educational point of view, the respondents share with the colleagues who have participated to other surveys [17, 26] important needs for training in pediatric palliative care. However, what is more difficult in a child’s death is the human aspect (58 %); this underlines the importance of providing residents with appropriate tools and support also from a psycho-relational point of view. Dealing with a death promotes in most cases the search for additional clinical tools to face similar events (78 %). An impressive 88 % of residents did not feel ready to face death; they considered essential to have a specific training curriculum and openly declared the interest and usefulness of any training course proposed. It is also interesting to notice that the percentage of residents that considered themselves professionally prepared to manage end-of-life care did not increase significantly according to the year of residency. This indicates that the training is not currently able to influence the self-confidence of the residents who have to deal with death and end-of-life care. Educational strategies The European guidelines suggest the use of different educational methods, according to the different contents [23]. As
already shown in previous studies, the direct experience of a child’s death does not necessarily correspond to the direct management of the situation. [17]. The lack of the possibility for residents to manage deaths personally is very significant (87 %) and does not increase appreciably during the residency years. Moreover, group discussion has been considered useful by a large proportion of respondents (40 %). Implementation of the curriculum The definition of resources (staff, faculties, administrative mechanisms) is necessary to develop a structured educational program. In Italy, a national project aimed at supervising the organization of widespread palliative care services is currently being developed. Their current geographical distribution is yet scarce and poorly integrated, as shown in our results: the residents, in fact, often reported difficult access to them or ignore their existence. Based on these considerations, we proposed some general principles for the implementation of an Italian Pediatric Palliative Care Curriculum (summarized in Fig. 1). In conclusion, in an interesting “call to action” paper, Collura has recently urged the medical staff to keep in mind that training in palliative care should not only be seen as a specific and limited experience; it should also be seen in its broadest sense of multi and interdisciplinary training, including clinical management of pain and end-of-life care, grief management, communication and ethics, coordination of care, so that it is possible to provide global assistance to patients and their families [7]. It is now important to invest energy and
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resources in this important area of care, in order to create or enhance already structured skills and core competencies in future pediatricians.
Conflict of interest The authors declare they have neither conflict of interest nor financial supports.
References 1. American Academy of Pediatrics (2000) Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 106:351–357 2. Baker JN, Torkildson C (2007) National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care. J Palliat Med 10:420–429 3. Benini F, Ferrante A, Facchin P (2007) Neonati e bambini “incurabili” e cure palliative. Medico Bambino 26:449–452 4. Benini F, Spizzichino M, Trapanotto M, Ferrante A (2008) Pediatric palliative care. Ital J Pediatr 34:4 5. Brown CM, Lloyd EC, Swearingen CJ, Boateng BA (2012) Improving resident self-efficacy in pediatric palliative care through clinical simulation. J Palliat Care 28:157–163 6. Carter BS, Howenstein M, Gilmer MJ, Throop P, France D, Whitlock JA (2004) Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care. Pediatrics 114(3). Available at: www.pediatrics.org/cgi/content/full/114/3/e361 7. Collura CA (2012) A call for pediatric hospice and palliative medicine curriculum [e-letter]. Pediatrics. Available at http://pediatrics. aappublications.org/content/129/4/e975/reply [last accessed April, 17 2013] 8. Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ (2004) Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 114:1248–1252 9. Craig F, Abu-Saad Huijer H, Benini F, Kuttner L, Wood C, Feraris PC, Zernikow B, Steering Committee of the EAPC task force on palliative care for children and adolescents (2007) IMPaCCT: standards for paediatric palliative care in Europe. Eur J Palliat Care 14:109–114 10. Durall A, Zurakowsi D, Wolfe J (2012) Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics 129:e975–e982 11. Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J et al (2011) Pediatric palliative care patients: a prospective multi center cohort study. Pediatrics 127:1094–1101 12. Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, Parslow RC (2012) Rising national prevalence of life-limiting conditions in children in England. Pediatrics 129:e923–e929 13. Gamondi C, Larkin P, Payne S (2013) Core competencies in palliative care: an EAPC White Paper on palliative care education—262 part 1. Eur J Palliat Care 20:86–91
14. Goldman A, Beardsmore S, Hunt J (1990) Palliative care for children with cancer-home, hospital, or hospice? Arch Dis Child 65:641–643 15. Hoyert DL, Mathews TJ (2006) Annual summary of vital statistics: 2004. Pediatrics 117:168–183.1 16. Kolarik RC, Walker G, Arnold RM (2006) Pediatric resident education in palliative care: a needs assessment. Pediatrics 117(6):1949– 1954 17. McCabe ME, Hunt EA (2008) Pediatric residents clinical and educational experiences with end-of-life care. Pediatrics 121:731–737 18. Meyer EC, Burns JP, Griffith JL, Truog RD (2002) Parental perspectives on end-of-life care in the pediatric intensive care unit. Crit Care Med 30:226–231 19. Michelson KN, Ryan AD (2009) Pediatric residents’ and fellows’ perspectives on palliative care education. J Palliat Med 12:451–457 20. Ministero della Salute (2008) Documento tecnico sulle cure palliative pediatriche. http://www.salute.gov.it/imgs/c_17_pubblicazioni_797_ allegato.pdf [last accessed April 2013] 21. Pilkey J, Harlos M, Hohl C (2011) Designing a Canadian pediatric palliative care residency program. J Pall care 27:175–180 22. Rendon-Macias ME, Olvera-Gonzales H, Villasís-Keever MA (2011) The pediatric patient at the end-of-life. A challenge for its identification and treatment. A survey in pediatricians and medical residents. Rev Invest Clin 63:135–147 [article in Spanish] 23. Report of the EAPC Steering Group on Medical Education and Training in palliative care. Recommendations of the European Association of Palliative Care (EAPC) for the Development of Undergraduate Curricula in palliative medicine at European medical schools. Available at http://www. eapcnet.eu/LinkClick.aspx?fileticket=S1MI-tuIutQ%3D [last accessed November, 25 2013] 24. Roth M, Wang D, Kim M, Kim M, Moody K (2009) An assessment of the current state of palliative care education in pediatric hematology/oncology fellowship training. Pediatr Blood Cancer 53: 647–651 25. Schiffman JD, Chamberlain LJ, Palmer L, Contro N, Sourkes B, Sectish TC (2008) Introduction of a pediatric palliative care curriculum for pediatric residents. J Palliat Med 11:164–170 26. Serwint JR, Rutherford LE (2006) Personal and professional experiences of pediatric residents concerning death. J Palliat Med 9:70–78 27. Sheetz MJ, Bowman MA (2008) Pediatric palliative care: an assessment of physicians’ confidence in skills, desire for training and willingness to refer for end-of-life care. Am J Hosp Palliat Care 25: 100–105 28. Straatman L, Miller T (2011) Paediatric palliative care: a survey of paediatricians and family practitioners. BMJ Support Palliat Care doi: 10.1136/bmjspcare-2011-00005818 29. World Health Organization. WHO definition of palliative care. Available at: http://www.who.int/cancer/palliative/definition/en/ [last accessed November 25, 2013] 30. Yazdani S, Evan E, Roubinov D, Chung PJ, Zeltzer L (2010) A longitudinal method of teaching pediatric palliative care to interns: preliminary findings regarding changes in interns’ comfort level. Palliat Support Care 8:35–40
ORIGINAL ARTICLE
Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy Francesca Rusalen & Anna Ferrante & Chiara Pò & Michele Salata & Caterina Agosto & Franca Benini
Received: 17 October 2013 / Revised: 10 February 2014 / Accepted: 24 March 2014 # Springer-Verlag Berlin Heidelberg 2014
Abstract Pediatric palliative care represents the ideal response to life-limiting and life-threatening diseases and requires a specific and multidisciplinary training. This study aims at evaluating in Italy the training programs offered in pain therapy and pediatric palliative care, the exposure, and the personal experience concerning end-of-life care management. The data have been obtained through a survey addressed to all the residents specializing in pediatrics in Italy. Three hundred forty-eight of 1,200 residents from 33 of the 41 schools of pediatrics existing in Italy responded to the questionnaire. One hundred seventy-four of them (50 %) declared they received training in end-of-life care at least once: 146 during their graduation course of medicine, 84 during the
pediatric residency, and 54 in both occasions. Sixty percent of respondents were present at one death at least, with an increasing percentage in the last years of residency (91.5 % in the fifth year) but only 12 % were directly involved in the management (36.2 % in the fifth year); 5.7 % managed at least one communication of death; 12.6 % followed sedo-analgesia protocols. Only 11 % of residents felt ready to face end-of-life care management. Conclusion: The training in end-of-life care in Italy is not currently satisfactory. Further efforts are therefore required to create a comprehensive and multidisciplinary training. Keywords Pediatric palliative care . Core competencies . Pediatric residency . Training . End-of-life care
Communicated by David Nadal Electronic supplementary material The online version of this article (doi:10.1007/s00431-014-2304-8) contains supplementary material, which is available to authorized users. F. Rusalen (*) : C. Pò : C. Agosto : F. Benini Pediatric Pain and Palliative Care Service, Department of Pediatrics, University of Padua, Via Giustiniani, 3, 35127 Padua, Italy e-mail: [email protected] C. Pò e-mail: [email protected]
Abbreviations ONSP National Observatory of Residents Specializing in Pediatrics USA United States of America NSAIDs Nonsteroidal anti-inflammatory drugs EAPC European Association of Palliative Care UK United Kingdom
C. Agosto e-mail: [email protected] F. Benini e-mail: [email protected] A. Ferrante Unit of Epidemiology and Community Medicine, Department of Pediatrics, University of Padua, Padua, Italy e-mail: [email protected] M. Salata National Observatory of Residents Specializing in Pediatrics (ONSP), Roma, Italy e-mail: [email protected]
Introduction In recent years, there has been a sharp reduction in the infant mortality rate, but at the same time, medical and technological progress has led to an increase in the spread of many diseases, once rapidly fatal, which have no reasonable hope of recovery. The welfare’s answer to life-limiting and life-threatening diseases is represented by palliative care, which provides total care of children and their families and ensures that the quality of their life is preserved [2, 4, 9, 14, 20, 29].
Eur J Pediatr
Pediatric palliative care involves peculiar and specific competencies and skills that require a specific training: it is provided together with the normal treatment in a common program, accompanying the patients and their families for many years; it is directed to patients who often suffer from multiple diseases and need an interdisciplinary approach; it involves choices and solutions that require expertise, analysis, and interaction abilities [11–13]. In 2000 in the USA, world organizations such as the American Academy of Pediatrics [1] already recommended that physicians, including pediatricians, were ensured appropriate training and that they were confident in administering palliative care and in managing end-of-life care [1]. Therefore, in recent years, various studies have measured the preparation of residents and physicians [17, 19, 22, 24, 25, 27, 28] and the quality of the service they offer [8, 18], laying the foundations for several experimental projects in palliative care training [5, 21, 25, 30, ]. Nevertheless, at the moment, the competencies and the awareness of the European residents on this issue are often not well defined.
Objective The objective of the present study is to assess the level of preparation and the involvement of the residents in the field of pediatric palliative care. In particular, the study aims at defining: (1) the level of knowledge reached in pain therapy and pediatric palliative care, (2) the skills gained in the management of end-of-life care, and (3) the reactions related to the concrete experiences in life-limiting and life-threatening diseases and pain therapy management.
Materials and methods Pediatric residency in Italy Pediatric residency in Italy includes 41 graduate medical education programs each referred to a medicine university and affiliated to a pediatric hospital, covering the whole country. Residency is structured into a 5-years period, during which interns experience general pediatrics and pediatric subspecialties for both out- and in-patients with an increasing level of autonomy in diagnosis and treatment. A theoretical training is also provided. A non-profit organization, the National Observatory of Pediatric Residents (ONSP), maintains a network connecting pediatric residents all over Italy, monitoring the training courses and promoting their development.
The project and the questionnaires The Veneto Regional Centre for Pain Therapy and Pediatric Palliative Care cooperated with the ONSP in the development of the project. The questionnaire we created was based on existing experiences, from which the main themes of the survey were selected: quantification of participation and involvement in dying process [17]; received training for each end-of-life care responsibility [17]; self-assessment of confidence in various aspects of end-of-life care responsibility [8, 27]; psychological/emotional comfort related to end-of-life care experience and interest in training [16, 19, 27]. The first questionnaire (ESM 1), addressed to a contact person for each pediatric university hospital, collected information about the number of residents enrolled for each of the 5 years of residency, including doctors who worked elsewhere or abroad. The second questionnaire (ESM 2), addressed specifically to each resident, included 17 questions (open and closed) focusing on: personal details; training received about palliative care during the graduation course of medicine and about pediatric palliative care and pain therapy during the pediatric residency; clinical and personal experience in end-of-life care management (communication, use of medications, corpse management, after-death interview); personal reactions (selfconfidence, fear, and emotions related to end-of-life experience; interest in additional training). Unlike other studies, we decided to devote some open questions to the emotions with the aim to more precisely direct further training programs. The survey In October–November 2011, the questionnaires were sent by e-mail to each ONSP contact person, together with a document which explained the objectives and methods of the survey: the first questionnaire was intended to be completed and sent back directly by a contact person of each pediatric universitary hospital, the second questionnaire was sent individually to each resident to be completed and sent back by him/her. The collection of data continued until June 2012. Three emails were sent every month as a reminder to every ONSP contact person who failed to return the questionnaires back. Data analysis The data were computerized using the program Microsoft Excel 2003 and a univariate descriptive analysis was carried out using the statistical package SAS Enterprise Guide 4.2. The responses to the open questions (e.g., the part of “personal reaction” in the questionnaire) were evaluated and qualitatively grouped.
Eur J Pediatr Table 2 Respondents who received training and duration of training program during the graduation course of medicine and during the pediatric residency
Results Personal details Three hundred forty-eight (29 %) of 1,200 residents have responded to the questionnaire, sending information from 33 of 41 pediatric university hospital, variously distributed in the country (Table 1). About 33 university children’s hospitals responded to the questionnaire. In relation to the year of residency, the questionnaires have been answered by 40 % of the all first-year residents, 35 % of the all second-year residents, 28 % of all third-year residents, 44 % of the all fourth-year residents, and 21 % of the all fifth-year residents. The majority of respondents were females (287 subjects— 82.4 % of the sample). Their age ranged from 24 to 45 years (average 29.4 years). Six of the residents also had a Master’s Degree and five had a degree in another medical specialty. Overall, 174 respondents (50 %) declared they received some type of training in end-of-life care at least once during medicine graduation/pediatric residency. Two hundred twenty received training about pain management during the residency.
Training during the graduation course of medicine Forty-two percent of respondents received training in end-oflife care management during their graduation course of medicine (Table 2), mostly during optional courses or during anesthesia or internal medicine courses (Table 3). Eightythree percent of them were offered a training consisting of a didactic meeting lasting less than 5 h during a 6-years graduation course (Table 2). The training mainly concerned ethical issues (80 %) and less frequently clinical (45 %) and legal (36 %) issues.
Training during the pediatric residency Only 4 of 33 pediatric university hospitals (12 %) included in their residency training program attendance at the Pain Therapy and Pediatric Palliative Care Service.
Table 1 Universitary children’s hospital: location Universitary children’s hospital: location
Total
Northern Italy Southern Italy Central Italy Total
204 81 62 348
a. Training during the graduation course of medicine Training in end-of-life care (% of total) Graduation course of medicine 146/348 (42 %) Duration of training 5 h 17 % b. Training during the pediatric residency Pediatric residency Training in pediatric end-of-life care 84/348 (24 %) (% of total) Duration of training 5 h 28 % Training in pediatric pain management 220/348 (63 %) (% of total) Duration of training 5 h 26 %
Training about assessment and management of pediatric pain During residency, 63.5 % of respondents received training in assessment and management of pediatric pain, 54 % of them were given training during residency courses or, less frequently, through seminars; however, only 26 % received a training longer than 5 h (Table 2). Training about pediatric end-of-life care During the residency training in pediatrics 24 % of residents received training in the approach/management of pediatric end-of-life care, mostly during subspecialty lectures (Tables 2 and 3). In 11 pediatric university hospitals (33 %), the topic had never been introduced. During residency, the number of hours devoted to training was low (Table 2). The training mostly focused on clinical issues (87 %), on ethical issues, (63 %) and less frequently on legal issues (18 %). Optional training about end-of-life Of the residents, 16.7 % declared that they compensated for lack of training participating to conferences and/or conventions. The percentage of participation increased following the residency years and reached its maximum among the fifth-year residents (29 %). Nine percent of respondents presented one or more reports about this issue at some conventions. Experience Pain management Forty-two percent of residents replied to the question concerning the use of opioids for pain therapy writing that they had prescribed opioids for pain management;
Eur J Pediatr Table 3 Occasions in which a training in end-of-life care was proposed during the graduation course in medicine and during the pediatric residency Occasion Medicine graduation Optional courses course Internal medicine lessons Anesthesia lessons Bioethic lessons Legal medicine lessons Others Pediatric residency Optional courses General pediatrics lessons Specialized pediatric lessons Bioethic lessons
Number of subjects 45 16 26 12 14 9 31 21 39 4
half of them only prescribed major opioids, and 25 % major opioids and/or mild opioids. Six percent answered indicating non-opioid drugs (NSAIDs, anesthetics). This percentage increased with the year attended, reaching 53 % among the residents of the fifth year. Of the residents, 12.64 % followed sedo-analgesia protocols. End-of-life care Sixty percent residents witnessed the death of at least one child; as expected, in the last years of residency, the percentage increase considerably reaching 91 % among the students of the fifth year (Table 4). The residents witnessed a total of 834 deaths that occurred in different wards, more frequently in Neonatal Intensive Care, Pediatric Intensive Care, and HematoOncology (Table 5). Sixty-four percent of residents participated to communication of end-of-life care and death. Only 6 % managed communication directly and, among them, only 36 % were trained for this task. Seventy-eight percent did not know the organizational procedures for corpse management (Table 4). Twenty-six percnet residents had a contact with the parents some time after the death of their child, as a result of personal initiative or after a request from the parents.
role of 9 % of respondents. Only for a small proportion (6 %), the experience of death did not have any impact. Attended training Of the residents, 98.5 % believed that the training in end-of-life care should be an integral part of the Pediatric Residency Training Program; 98 % of respondents found the participation to training courses in on this topic useful for their clinical practice. Forty-three percent thought that it is important to be properly prepared and to receive specific training, which is considered an integral part of the professional competencies of a pediatrician, and 11.5 % of residents found it relevant to be ready to deal with high emotional impact situations. Only 11 % felt professionally prepared to deal with end-oflife care, a percentage which did not increase significantly among the respondents attending the last years of residency (Table 4.)
Discussion The theme of experience and training of residents in pediatric palliative care has already been treated in some studies, which have laid the foundations for the implementation of different training and education projects, especially in the USA. Similar studies are not currently available in Europe or in Italy, where recently a specific law by the Ministry of Health (Law 38/2010) has established the importance of continuing education in pediatric palliative care [20]. It has also identified regional/super regional pediatric palliative care centers as responsible for palliative care research and education. Starting from the data obtained in our survey, the Veneto Region Pediatric Pain and Palliative Care Center and the ONSP have analyzed the current Italian situation. According to the Recommendations of the European Association of Palliative Care (EAPC) for the Development of Undergraduate Curricula in palliative medicine at European medical schools, the organization of an educational program implies a multistep-approach [23]. General needs and problems
Personal reactions Fears and concerns The most frequent concern when confronted with death was much more linked to the emotional aspect and to clinical issues than to organizational or medical– legal issues (Table 6). Concerning the emotional response, witnessing a child’s death led 16 % of residents to approach similar cases more closely, while 4 % of residents reacted avoiding similar situations later. Experiencing the death of a child was a stimulus to enhance the study and search for clinical tools for 37 % of residents and it stimulated observations on ethical and spiritual matters and on the professional
The core curriculum definition implies identification of background. As described in the USA [15], also in Europe the number of children with “life-limiting conditions”is relevant and progressively increasing: a recent UK study has estimated a prevalence of 32 cases of 10,000 in 2009–2010 which is twice the previous estimate of 16 of 10,000 in 2007 [12]. In Italy, there are about 12,000 children with “life-limiting conditions”, with a mortality of 1,200/year [3]. The poor participation to this survey (only 29 % of the contacted residents) is a strong indicator of how the problem of pediatric palliative care is underestimated.
6 (7.3 %) 8 (11.4 %) 7 (11.6 %) 12 (13.5 %) 5 (11.1 %) 38 21 (25.6 %) 23 (32.8 %) 29 (48.3 %) 47 (52.9 %) 25 (55.5 %) 145 25 (30.5 %) 40 (57 %) 42 (60 %) 74 (83 %) 42 (93 %) 223 5 (6 %) 6 (8.6 %) 9 (15 %) 12 (13.5 %) 12 (26.6 %) 44
2 (2.4 %) 3 (4.3 %) 1 (1.6 %) 5 (5.6 %) 9 (20 %) 20
4 (4.9 %) 16 (22.8 %) 15 (25 %) 22 (24.7 %) 18 (40 %) 75
Residents ready to manage endof-life care Residents present at communication Sedo-analgesia protocols
Table 5 Deaths related to ward
Ward
Total
Neonatal pathology ward Intensive care ward Hematology–oncology Pediatric ward Not-specified ward abroad
217 207 198 117 62
Casualty ward Operating theater/surgical ward Total
30 3 834
Specific needs As already reported in international literature, experimenting the death of a child is not uncommon during the pediatric residency program: according to the data we collected, this event involved 60 % of respondents, with an average exposure ranging from 2 to 5.8 deaths per resident, which is comparable to previous surveys reporting 3.2–4.7 deaths per training program [16, 17]. Unlike previous studies, which reported a high percentage of deaths in intensive care [6, 17], our data show a homogeneous distribution of events between intensive care units (a total of 51 % of events) and other wards. This data demonstrates that the experience of death is common and not only limited to certain subspecialties.
3.5 2 1 2.9 5.2 3 (3.7 %) 6 (8.8 %) 2 (3.3 %) 15 (17 %) 17 (36.2 %) 43 4 2 3.4 5 5.8 82 70 60 89 45 348 1 2 3 4 5 Total
17 (21 %) 34 (50 %) 41 (68.3 %) 73 (83 %) 43 (91.5 %) 208
Average number of deaths for resident Average number of deaths for resident Total
Residents who were present at a death
Residents who managed a death
Goals and objectives
Year
Table 4 Experience of end-of-life care and death related to the school year attended
Direct management of communication
Knowledge of corpse management procedures
Opioids prescription
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Knowledge The training program in end-of-life care management was very deficient both during the graduation course of medicine and the pediatric residency. The training in assessment and management of pain involved a larger number of residents (63.5 %), but it also had a limited duration. This aspect confirms the need for vertical integrations and continuous medical education. Skills Seventy-nine percent of respondents did not know corpse management procedures; 57 % never prescribed opioids for pain control; 87 % never applied sedation–analgesia protocols in end-of-life care. Therefore, knowledge of the drugs used in pain control and treatment appeared far from optimal. Communication with the family at the time of death is almost exclusively entrusted to fully licensed physicians Table 6 Fears in the management of pediatric death
Types of fears
Total
Human/emotional aspect Clinical aspect Legal aspect Organizational aspect
292 107 53 53
Eur J Pediatr Fig. 1 General principles for a multi-step implementation of an Italian pediatric palliative care curriculum according with Recommendations of the European Association of Palliative Care (EAPC) for the Development of Undergraduate Curricula in palliative medicine at European medical school: It is necessary
(87 %); unlike other studies, this is seen as appropriate in 90 % of questionnaires [10]. In addition to a training gap, these data also suggest a deficit of progressive acquisition of autonomy by the residents in end-of-life care management. Attitudes From an educational point of view, the respondents share with the colleagues who have participated to other surveys [17, 26] important needs for training in pediatric palliative care. However, what is more difficult in a child’s death is the human aspect (58 %); this underlines the importance of providing residents with appropriate tools and support also from a psycho-relational point of view. Dealing with a death promotes in most cases the search for additional clinical tools to face similar events (78 %). An impressive 88 % of residents did not feel ready to face death; they considered essential to have a specific training curriculum and openly declared the interest and usefulness of any training course proposed. It is also interesting to notice that the percentage of residents that considered themselves professionally prepared to manage end-of-life care did not increase significantly according to the year of residency. This indicates that the training is not currently able to influence the self-confidence of the residents who have to deal with death and end-of-life care. Educational strategies The European guidelines suggest the use of different educational methods, according to the different contents [23]. As
already shown in previous studies, the direct experience of a child’s death does not necessarily correspond to the direct management of the situation. [17]. The lack of the possibility for residents to manage deaths personally is very significant (87 %) and does not increase appreciably during the residency years. Moreover, group discussion has been considered useful by a large proportion of respondents (40 %). Implementation of the curriculum The definition of resources (staff, faculties, administrative mechanisms) is necessary to develop a structured educational program. In Italy, a national project aimed at supervising the organization of widespread palliative care services is currently being developed. Their current geographical distribution is yet scarce and poorly integrated, as shown in our results: the residents, in fact, often reported difficult access to them or ignore their existence. Based on these considerations, we proposed some general principles for the implementation of an Italian Pediatric Palliative Care Curriculum (summarized in Fig. 1). In conclusion, in an interesting “call to action” paper, Collura has recently urged the medical staff to keep in mind that training in palliative care should not only be seen as a specific and limited experience; it should also be seen in its broadest sense of multi and interdisciplinary training, including clinical management of pain and end-of-life care, grief management, communication and ethics, coordination of care, so that it is possible to provide global assistance to patients and their families [7]. It is now important to invest energy and
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resources in this important area of care, in order to create or enhance already structured skills and core competencies in future pediatricians.
Conflict of interest The authors declare they have neither conflict of interest nor financial supports.
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