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Education
Paediatric palliative care: a survey of paediatricians and family practitioners Lynn Straatman, Tanice Miller
Canuck Place Children’s Hospice, Vancouver, Canada Correspondence to Lynn Straatman, University of British Columbia, Centre for Community Child Health Research, 4480 Oak Street, F615, Vancouver, BC V6H 3V4, Canada; [email protected] Accepted 3 April 2012 Published Online First 8 June 2012
To cite: Straatman L, Miller T. BMJ Supportive & Palliative Care 2013;3:366–371.
366
ABSTRACT Background Paediatric palliative care focuses on the enhancement of the quality of life for a child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a life-threatening illness. The purpose of this study was to assess the experience with and confidence in providing paediatric palliative care of practicing family/general practitioners (GPs) and paediatricians. In addition, the learning needs, modes of learning and their methods of coping/self-care were questioned. Methods Two hundred paediatricians and GPs in the province of British Columbia were randomly selected to participate in a mailed survey. The survey consisted of three categories: demographic information, experience and knowledge of paediatric palliative care, educational needs and preferences for learning and provision of their own self-care. Results The response rate of completed surveys was 56.5%. Only 40.1% of respondents felt their knowledge and experience were adequate. Overall, 73.5% of the respondents reported that they would like to learn more about paediatric palliative care. Over 53% of those surveyed preferred that learning be offered remotely through either internet or correspondence. Seventy-four per cent of respondents expressed they had adequate or very adequate self-care strategies to meet their own needs of well-being. Conclusions The results of the survey will guide the paediatric palliative care community to design programmes that will better educate practicing physicians and future physicians about paediatric palliative and end of life care, healthcare services and family communication and support.
INTRODUCTION Paediatric palliative care is defined as a philosophy of care that focuses on the enhancement of the quality of life for a
child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a life-threatening illness.1 Palliative care with children differs from adult palliative care in several ways. Specifically, the number of children dying is small compared with the adult population. Many of the conditions are extremely rare or specific to childhood and may be familial in nature and therefore more than one child may be affected. In addition, a characteristic of childhood is the continuing physical, emotional and cognitive development of the child, which is reflected in their communication skills and ability to understand their disease and death. These differences add complexity to the nature of their care and often involve multiple care givers, both professional and non-professional. It also necessitates care by multiple physicians including family/general practitioners (GPs), general paediatricians and subspecialty paediatrics. Coordination of care becomes a major issue with children who are cared for in many settings including home, hospital, hospice and care facilities. It is also well recognised that the delivery of optimal palliative care requires an interdisciplinary approach.2 Surveys have been conducted with adult physicians to assess their comfort and confidence in providing palliative care to adults. In 2004, Farber and colleagues3 surveyed 500 internists and 500 GPs regarding their experience with providing palliative care. Information obtained included basic demographic information, the frequency with which they provided 10 palliative care items and a self-report of their own proficiency in providing palliative care. Of the 462 who
Straatman L, et al. BMJ Supportive & Palliative Care 2013;3:366–371. doi:10.1136/bmjspcare-2011-000058
Downloaded from http://spcare.bmj.com/ on July 14, 2015 - Published by group.bmj.com
Education returned the survey, only 36% had attended at least a seminar in palliative care. There was an association between the interest in palliative care and an increased frequency of performing palliative care items. Similarly, Seamark and coworkers4 reported in 1998 on a telephone survey of GPs. In this study, 63% reported attending at least a single lecture on palliative care. The areas of learning needs identified included pain and symptom management, emotional distress and coping with their own responses to death and dying. In the paediatric literature there are a few studies that surveyed small groups of physicians in conjunction with studies of other healthcare professionals. One study5 surveyed 446 staff members and community physicians with respect to comfort and expertise in the delivery of end of life care. In this study, 110 of the 446 were paediatricians with only 26 being general paediatricians. Staff physicians in the study reported feeling inexperienced in three main areas: communication (with families/patients), pain and symptom management and personal support. Amery and Lapwood6 studied the educational needs of children’s hospice doctors through a descriptive quantitative and qualitative survey in which 35 paediatric hospice physicians answered a questionnaire designed to survey their self-assessed educational competencies in 19 subject areas. In a second stage, they prospectively recorded challenging cases and identified the physician’s unmet educational needs. Paediatric hospice care in the UK is performed by specialist GPs (ie, GPs with an expertise in children’s palliative care) and paediatricians. At the time of the Amery and Lapwood6 study there were no formalised educational or organisational standards for physicians. The self-rated questionnaires revealed that the most valued educational areas were symptom control, pharmacology and management of specific conditions. The personal educational diary analysis revealed that the most valued educational areas included personal coping strategies, communication and team building skills. The main finding of that study was the disparity between the self-rated educational needs and the learning needs derived from personal education diaries. Other studies7 8 recently have focused on the perspectives of a limited number of specialist physicians in tertiary care hospitals to assess their concept of paediatric palliative care. In one Canadian study, three principal themes were identified including palliative care equated only to relief of symptoms, discomfort with the term palliative care and when to introduce palliative care. The purpose of this study was to assess the experience with and confidence of practicing family/GP and paediatricians in providing paediatric palliative care. In addition, the learning needs, topics for education and the mode in which they prefer to learn were
surveyed. Finally, their methods of coping/self-care were questioned. METHODS After the Institutional Review Board approval was obtained, the survey was mailed to 200 randomly selected practicing paediatricians and GPs throughout the province of British Columbia, Canada, as identified through the provincial directory. Students, residents and non-practicing physicians were excluded. In order to obtain a complete view of rural and urban settings across the province, only 10% of the participants were from the tertiary medical centre. Using these criteria, the number of eligible practicing paediatricians to select from was 163. One hundred GPs with similar postal codes to the 100 paediatricians selected were also mailed the study. Each physician received a questionnaire with a preaddressed reply envelope to return the questionnaire anonymously. Return of the questionnaire constituted consent to participate in the study in accordance with the Institutional Review Board approval. Eight weeks after the initial study was mailed a follow-up reminder was sent to all participants. The survey consisted of three sections. The first section collected demographic data such as gender, age, years in practice, location of practice and percentage of time involved in paediatric palliative care. The second section included a self-report of knowledge, perceived competence (ability to perform a specified task) and personal experience in paediatric palliative care including areas of learning needs and preferred modes of learning. A third section contained items concerning the physician’s perception of his or her own ability for self-care. The questions were devised specifically for the survey. The survey included items requiring Likert scale responses (eg, never, sometimes, usually), yes/no responses and free response questions. The survey was tested on five physicians from the tertiary children’s hospital and a children’s hospice for face and content validity. Data were entered for analysis manually by two individuals with a cross check of 25% of the sample; there were no errors detected. A two-tailed Fisher’s exact test was used to compare categorical responses. RESULTS The response rate was 58.5% (117/200). Of the 117 surveys returned 113 contained complete information. The four incomplete surveys were not used in the analysis. The response rate therefore for fully completed surveys was 56.5%. Of the achieved sample, 61.9% were paediatricians and 38.1% were family practitioners. Demographics of the completed 113 surveys are presented in table 1. The mean age of the responding physicians was 47.2 years. There was almost an equal split between male and female respondents (54.9% vs 45.1%); almost 71% of
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Education Table 1
Demographics of questionnaire respondents (n=113)
Mean age (range)
47.2 years (31–71 years)
Gender Male 62 (54.9%) Female 51 (45.1%) Years of experience Less than 5 years 10 (8.8%) 5–10 years 23 (20.4%) 10–20 years 34 (30.1%) More than 20 years 46 (40.7%) Location of practice Vancouver, British Columbia 60 (53.1%) Out of Vancouver 53 (46.9%) Training General practitioners 43 (38.1%) Paediatricians 56 (49.6%) Paediatric subspecialists 14 (12.3%) Percentage of practice time caring for paediatric patients with life-limiting diseases Less than 10% 90 (79.6%) Between 10% and 20% 14 (12.4%) Between 20% and 50% 0 More than 50% 1 (0.9%) No response 8 (7.1%) Current level of medical knowledge and experience (n=104) Very adequate 2 (0.96%) Adequate 41 (39.4%) Less than adequate 44 (42.3%) Not adequate 17 (16.3%) Adequacy of self-care experiences (n=99) Very adequate 11 (11.1%) Adequate 63 (63.6%) Less than adequate 18 (18.2%) Not adequate 7 (7.1%)
respondents had more than 10 years experience. Approximately half (53.1%) of the respondents were located within 50 km of the major city in the province. The remainder were equally dispersed throughout the province. Almost 80% of respondents spent less than 10% of their time caring for paediatric patients with lifelimiting disease. The type of service provided to children with progressive life-limiting disease was split with 29% providing consultative care only, 41% providing primary care only and 41% providing both consultative and primary care. On a five-point Lickert scale from very inadequate to very adequate, 40.1% of respondents felt their knowledge was adequate or very adequate. Paediatricians were more likely to report that their current medical knowledge and experience were adequate or very adequate to meet the needs of their paediatric palliative care patients as compared with family physicians (50.2% vs 32.6%). Overall, 73.5% 368
Box 1 Opics suggested for learning ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸
Clinical and symptom management Pain Nutrition Nausea Dyspnoea Trajectory Sedation at the end of life (terminal sedation) Psychosocial/family Bereavement Siblings: expected death and bereavement Spirituality Culturally appropriate care Psychological care of family and siblings Health services Special cases/populations (adolescents) How to handle new technology Access to services: bereavement, respite, counselling
of respondents reported that they would like to learn about the care of paediatric palliative care patients and their families ( paediatricians 82.8%, GPs 57.9%). Ninety-four per cent agreed with the statement that medical advances and technology have changed treatment of children with progressive life-limiting disease over the course of their practice. Respondents were asked to list what they thought were the three general educational needs for physicians around the topic of paediatric palliative care. Their responses are summarised in Box 1. Furthermore, respondents were asked to choose their preferred mode of learning about paediatric palliative care from six possible options. Fifty-three per cent of the respondents preferred that learning be offered remotely through either internet or correspondence with 29% reporting that weekend workshops are preferred. There was no difference in the mode of learning between paediatricians or family physicians (table 2). Respondents reported on the four-point Lickert scale that they felt they had very adequate (11%) or adequate (63%) self-care experiences to meet their own needs of well-being (table 1). In addition, 59% of respondents reported they would like to learn more about types of support for healthcare providers that care for children with progressive life-limiting
Table 2 Mode of learning desired (n=113) Weekend workshops Week-long seminar Monthly seminar Conference Internet learning Correspondence learning
33 1 12 7 36 24
(29.2%) (0.9%) (10.6%) (6.2%) (31.9%) (21.2%)
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Education Box 2 Methods of caring for self ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸
Spiritual outlook on life Share responsibilities with colleagues Debrief with colleagues (formal or informal) Comfort from family/spouse Extracurricular activities Time off/holidays Healthy lifestyle Meditation Years of experience as a physician
diseases. Sixty-eight per cent of paediatricians and 45.3% of family practitioners wanted to learn more about support for themselves. Participants listed various ways in which they cared for themselves when dealing with paediatric palliative care patients (Box 2). DISCUSSION Paediatric palliative care is a rapidly growing area with more physicians realising the need for more knowledge. It is imperative to know what the gaps and opportunities are before embarking on education and physician support programmes for physicians. This survey provides a basis for modification of existing programmes and future programme design for practicing physicians. Similar to the survey of Farber and colleagues3 of adult palliative care with a response rate of 48%, this survey had a very good response rate of 56.5%. It is interesting to note that there was almost an equal response between men and women in the paediatric survey, unlike the survey of Farber and coworkers3 of adult palliative care, which had a substantial male population. This may reflect both the trend of more women in medicine and more women choosing specialties such as paediatrics and family practice.9 This survey also had representation from all areas of the province, and thus both rural and urban conditions of practice could be examined. Also to be noted is that a significant number of respondents had greater than 10 years of clinical practice. Recent guidelines have been published on the provision of palliative care for children by various organisations.10 11 As indicated in this survey, most paediatricians and family practitioners spend only a small amount of their clinical time caring for paediatric palliative care patients. Despite the small number of paediatric end of life patients in their practices, general paediatricians in particular wanted to become more educated in all aspects of providing end of life care. Unlike a study by Sheetz and Bowman12 which reported only 36% of physicians would likely attend training in paediatric palliative care, in this survey 82% of paediatricians and 57% of family practitioners
wanted to learn more. This may reflect the increased distances from tertiary care centres in British Columbia necessitating that both paediatricians and family practitioners provide more care in community settings than in the Sheetz and Bowman study12 which was limited to physicians in an urban setting. The higher percentage of paediatricians wanting to learn may be a consequence of their ongoing management of children with complex, rare life-threatening illness over a prolonged period of time and therefore an increased need and desire to learn more. Excellence in paediatric palliative care requires competency in multiple areas including recognising and assessing physical symptoms such as pain, psychological and spiritual distress and responding appropriately to the needs of the child and family. It is interesting to note that the learning needs suggested by the respondents to the questionnaire were the same 19 subject areas identified in the Avery and Lapwood6 study that were derived from an analysis of what ‘experts’ in the field of palliative care suggested as key educational needs. There are numerous reports that indicate physicians do not have adequate education to prepare them to provide end of life care to adults13 and children.14 Recently, palliative care education has been integrated into medical school and residency programmes including paediatric residency programmes.15 16 Notwithstanding this integration, Kolarik et al17 reported that despite paediatric residents caring for dying patients and participating in structured learning such as workshops they still felt only minimally able to treat symptoms at the end of life. While most physicians in this study had greater than 10 years in practice, most had not received paediatric palliative care training as part of their medical education or residency training. Programmes for learning paediatric palliative care have been designed. These programmes include comprehensive onsite courses such as the Initiative for Pediatric Palliative Care Curriculum18 19 and workshops20 at conferences. However, as indicated in this survey, many physicians would like to learn via the internet or correspondence as opposed to comprehensive onsite courses. Several investigators have demonstrated the effectiveness of online education in adult palliative care. Koczwara et al21 demonstrated that a 7.5-h online education programme for rural providers resulted in meeting the needs of 91% of respondents with 75% planning to review or change their practice. Studies have examined the effect of exposure to caring for patients,22 especially children at the end of life, on physicians and have suggested that this exposure may have detrimental effects on their physical and emotional well-being.23 24 The respondents in this survey reported adequate self-care through many different practices. Similar to other studies,25 the major sources of support cited included family members and friends. There were no differences noted in self-care
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Education practices by paediatricians or family practitioners. However, there was a trend towards family practitioners reporting their self-care was adequate more than paediatricians. Conversely, more paediatricians wanted to learn more about support and self-care strategies for healthcare providers. Not addressed in this study was the potential that exposure to paediatric end of life care may also have positive implications for personal growth, meaning in life and compassion satisfaction.26
2 3
4
Limitations
This study has some limitations. First, the data collected are all from self-reports by physicians; no attempt was made to assess the actual behaviours or knowledge competencies of the physicians involved with the paediatric palliative care population. In addition, the survey was anonymous; therefore, no comparative demographic data could be collected from those who did not respond. As paediatric palliative care is a multidisciplinary specialty, it involves nursing, social work and spiritual care. All of these allied health professionals have learning needs too and their learning may impact the role of the physician. This study was limited to physicians.
5
6
7
8
9
Future implications
Both physician groups in this study wanted to learn more about paediatric palliative care with more paediatricians than family physicians indicating an interest in learning more about paediatric palliative care. Both physician groups identified the same topic areas for learning and both groups expressed the preferred mode for learning being internet or correspondence learning. A curriculum should be designed based on these desires. Physicians have expressed their learning needs in paediatric palliative care and developing effective strategies to support their learning will be important in improving the quality of care delivery for children living with a progressive life-threatening illness and their families. In addition, self-care support services for physicians involved in caring for children with progressive life-limiting diseases need to be further developed especially for physicians in rural settings.
10
Contributors LS and TM equally participated in the conception and implementation of the study. LS wrote the first draft and all subsequent drafts were edited by both authors.
16
Funding Canuck Place Children’s Hospice Research Grant.
17
11
12
13
14
15
Competing interests None. Ethics approval This study was conducted with the approval of The University of British Columbia St Paul’s Hospital Ethics Review Board.
18
Provenance and peer review Not commissioned; externally peer reviewed.
19
REFERENCES
20
1 Children’s International Project on Palliative/Hospice Services (ChIPPS) Administrative/Policy Workgroup. A call for change:
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recommendations to improve the care of children living with life-threatening conditions. Alexandria, VA: National Hospice and Palliative Care Organization, 2001. http://www.nhpco.org/ files/public/ChIPPSCallforChange.pdf (accessed 5 January 2010). Haggerty JL, Reid RJ, Freeman GK, et al. Continuity of care: a multidisciplinary review. BMJ 2003;327:1219–1221. Farber NJ, Urban SY, Collier VU, et al. Frequency and perceived competence in providing palliative care to terminally ill patients: a survey of primary care physicians. J Pain Symptom Manage 2004;28:364–372. Seamark DA, Williams S, Hall M, et al. Palliative terminal cancer care in community hospitals and a hospice: a comparative study. Br J Gen Pract 1998;48:1312–1316. Contro NA, Larson J, Scofield S, et al. Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 2004;114:1248–1252. Amery J, Lapwood S. A study into the educational needs of children’s hospice doctors: a descriptive quantitative and qualitative survey. Palliat Med 2004;18:727–733. St-Laurent-Gagnon T, Carnevale FA, Duval M. Pediatric palliative care: a qualitative study of physicians’ perspectives in a tertiary care university hospital. J Palliat Care 2008;24: 26–30. Docherty SL, Miles MS, Brandon D. Searching for ‘the dying point:’ providers’ experiences with palliative care in pediatric acute care. Pediatr Nurs 2007;33:335–341. Burton KR, Wong IK. A force to contend with: The gender gap closes in Canadian medical schools. CMAJ 2004;170:1385–1386. American Academy of Pediatrics, Committee on Bioethics, Committee on Hospital Care. Palliative care for children. Pediatrics 2000;106:351–7. Canadian Pediatric Society, Bioethics Committee. Advance care planning for pediatric patients. Paediatr Child Health 2008;13:791–6. Sheetz MJ, Bowman MA. 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 2008;25:100–105. Baker JN, Torkildson C, Baillargeon JG, et al. National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care. J Palliat Med 2007;10:420–429. Bagatell R, Meyer R, Herron S, et al. When children die: a seminar series for pediatric residents. Pediatrics 2002;110: 348–353. Sahler OJ, Frager G, Levetown M, et al. Medical education about end-of-life care in the pediatric setting: principles, challenges, and opportunities. Pediatrics 2000;105:575–584. Schiffman JD, Chamberlain LJ, Palmer L, et al. Introduction of a pediatric palliative care curriculum for pediatric residents. J Palliat Med 2008;11:164–170. Kolarik RC, Walker G, Arnold RM. Pediatric resident education in palliative care: a needs assessment. Pediatrics 2006;117:1949–1954. Browning DM, Solomon MZ. The initiative for pediatric palliative care: an interdisciplinary educational approach for healthcare professionals. J Pediatr Nurs 2005;20:326–334. Initiative for Pediatric Palliative Care Curriculum. http://www. ippcweb.org/modules.asp. (accessed 5 January 2010). Brazil K, Howell D, Marshall D, et al. Building primary care capacity in palliative care: proceedings of an interprofessional workshop. J Palliat Care 2007;23:113–116.
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Education 21 Koczwara B, Francis K, Marine F, et al. Reaching further with online education? The development of an effective online program in palliative oncology. J Cancer Educ 2010;25:317–323. 22 Kearney MK, Weininger RB, Vachon ML, et al. Self-care of physicians caring for patients at the end of life: ‘Being connected. a key to my survival’. JAMA 2009;301:1155–64, E1. 23 Meadors P, Lamson A. Compassion fatigue and secondary traumatization: provider self care on intensive care units for children. J Pediatr Health Care 2008;22:24–34.
24 Rourke MT. Compassion fatigue in pediatric palliative care providers. Pediatr Clin North Am 2007;54: 631–44, x. 25 Khaneja S, Milrod B. Educational needs among pediatricians regarding caring for terminally ill children. Arch Pediatr Adolesc Med 1998;152:909–914. 26 Taubman-Ben-Ari O, Weintroub A. Meaning in life and personal growth among pediatric physicians and nurses. Death Stud 2008;32:621–645.
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Paediatric palliative care: a survey of paediatricians and family practitioners Lynn Straatman and Tanice Miller BMJ Support Palliat Care 2013 3: 366-371 originally published online May 31, 2012
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Education
Paediatric palliative care: a survey of paediatricians and family practitioners Lynn Straatman, Tanice Miller
Canuck Place Children’s Hospice, Vancouver, Canada Correspondence to Lynn Straatman, University of British Columbia, Centre for Community Child Health Research, 4480 Oak Street, F615, Vancouver, BC V6H 3V4, Canada; [email protected] Accepted 3 April 2012 Published Online First 8 June 2012
To cite: Straatman L, Miller T. BMJ Supportive & Palliative Care 2013;3:366–371.
366
ABSTRACT Background Paediatric palliative care focuses on the enhancement of the quality of life for a child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a life-threatening illness. The purpose of this study was to assess the experience with and confidence in providing paediatric palliative care of practicing family/general practitioners (GPs) and paediatricians. In addition, the learning needs, modes of learning and their methods of coping/self-care were questioned. Methods Two hundred paediatricians and GPs in the province of British Columbia were randomly selected to participate in a mailed survey. The survey consisted of three categories: demographic information, experience and knowledge of paediatric palliative care, educational needs and preferences for learning and provision of their own self-care. Results The response rate of completed surveys was 56.5%. Only 40.1% of respondents felt their knowledge and experience were adequate. Overall, 73.5% of the respondents reported that they would like to learn more about paediatric palliative care. Over 53% of those surveyed preferred that learning be offered remotely through either internet or correspondence. Seventy-four per cent of respondents expressed they had adequate or very adequate self-care strategies to meet their own needs of well-being. Conclusions The results of the survey will guide the paediatric palliative care community to design programmes that will better educate practicing physicians and future physicians about paediatric palliative and end of life care, healthcare services and family communication and support.
INTRODUCTION Paediatric palliative care is defined as a philosophy of care that focuses on the enhancement of the quality of life for a
child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a life-threatening illness.1 Palliative care with children differs from adult palliative care in several ways. Specifically, the number of children dying is small compared with the adult population. Many of the conditions are extremely rare or specific to childhood and may be familial in nature and therefore more than one child may be affected. In addition, a characteristic of childhood is the continuing physical, emotional and cognitive development of the child, which is reflected in their communication skills and ability to understand their disease and death. These differences add complexity to the nature of their care and often involve multiple care givers, both professional and non-professional. It also necessitates care by multiple physicians including family/general practitioners (GPs), general paediatricians and subspecialty paediatrics. Coordination of care becomes a major issue with children who are cared for in many settings including home, hospital, hospice and care facilities. It is also well recognised that the delivery of optimal palliative care requires an interdisciplinary approach.2 Surveys have been conducted with adult physicians to assess their comfort and confidence in providing palliative care to adults. In 2004, Farber and colleagues3 surveyed 500 internists and 500 GPs regarding their experience with providing palliative care. Information obtained included basic demographic information, the frequency with which they provided 10 palliative care items and a self-report of their own proficiency in providing palliative care. Of the 462 who
Straatman L, et al. BMJ Supportive & Palliative Care 2013;3:366–371. doi:10.1136/bmjspcare-2011-000058
Downloaded from http://spcare.bmj.com/ on July 14, 2015 - Published by group.bmj.com
Education returned the survey, only 36% had attended at least a seminar in palliative care. There was an association between the interest in palliative care and an increased frequency of performing palliative care items. Similarly, Seamark and coworkers4 reported in 1998 on a telephone survey of GPs. In this study, 63% reported attending at least a single lecture on palliative care. The areas of learning needs identified included pain and symptom management, emotional distress and coping with their own responses to death and dying. In the paediatric literature there are a few studies that surveyed small groups of physicians in conjunction with studies of other healthcare professionals. One study5 surveyed 446 staff members and community physicians with respect to comfort and expertise in the delivery of end of life care. In this study, 110 of the 446 were paediatricians with only 26 being general paediatricians. Staff physicians in the study reported feeling inexperienced in three main areas: communication (with families/patients), pain and symptom management and personal support. Amery and Lapwood6 studied the educational needs of children’s hospice doctors through a descriptive quantitative and qualitative survey in which 35 paediatric hospice physicians answered a questionnaire designed to survey their self-assessed educational competencies in 19 subject areas. In a second stage, they prospectively recorded challenging cases and identified the physician’s unmet educational needs. Paediatric hospice care in the UK is performed by specialist GPs (ie, GPs with an expertise in children’s palliative care) and paediatricians. At the time of the Amery and Lapwood6 study there were no formalised educational or organisational standards for physicians. The self-rated questionnaires revealed that the most valued educational areas were symptom control, pharmacology and management of specific conditions. The personal educational diary analysis revealed that the most valued educational areas included personal coping strategies, communication and team building skills. The main finding of that study was the disparity between the self-rated educational needs and the learning needs derived from personal education diaries. Other studies7 8 recently have focused on the perspectives of a limited number of specialist physicians in tertiary care hospitals to assess their concept of paediatric palliative care. In one Canadian study, three principal themes were identified including palliative care equated only to relief of symptoms, discomfort with the term palliative care and when to introduce palliative care. The purpose of this study was to assess the experience with and confidence of practicing family/GP and paediatricians in providing paediatric palliative care. In addition, the learning needs, topics for education and the mode in which they prefer to learn were
surveyed. Finally, their methods of coping/self-care were questioned. METHODS After the Institutional Review Board approval was obtained, the survey was mailed to 200 randomly selected practicing paediatricians and GPs throughout the province of British Columbia, Canada, as identified through the provincial directory. Students, residents and non-practicing physicians were excluded. In order to obtain a complete view of rural and urban settings across the province, only 10% of the participants were from the tertiary medical centre. Using these criteria, the number of eligible practicing paediatricians to select from was 163. One hundred GPs with similar postal codes to the 100 paediatricians selected were also mailed the study. Each physician received a questionnaire with a preaddressed reply envelope to return the questionnaire anonymously. Return of the questionnaire constituted consent to participate in the study in accordance with the Institutional Review Board approval. Eight weeks after the initial study was mailed a follow-up reminder was sent to all participants. The survey consisted of three sections. The first section collected demographic data such as gender, age, years in practice, location of practice and percentage of time involved in paediatric palliative care. The second section included a self-report of knowledge, perceived competence (ability to perform a specified task) and personal experience in paediatric palliative care including areas of learning needs and preferred modes of learning. A third section contained items concerning the physician’s perception of his or her own ability for self-care. The questions were devised specifically for the survey. The survey included items requiring Likert scale responses (eg, never, sometimes, usually), yes/no responses and free response questions. The survey was tested on five physicians from the tertiary children’s hospital and a children’s hospice for face and content validity. Data were entered for analysis manually by two individuals with a cross check of 25% of the sample; there were no errors detected. A two-tailed Fisher’s exact test was used to compare categorical responses. RESULTS The response rate was 58.5% (117/200). Of the 117 surveys returned 113 contained complete information. The four incomplete surveys were not used in the analysis. The response rate therefore for fully completed surveys was 56.5%. Of the achieved sample, 61.9% were paediatricians and 38.1% were family practitioners. Demographics of the completed 113 surveys are presented in table 1. The mean age of the responding physicians was 47.2 years. There was almost an equal split between male and female respondents (54.9% vs 45.1%); almost 71% of
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Education Table 1
Demographics of questionnaire respondents (n=113)
Mean age (range)
47.2 years (31–71 years)
Gender Male 62 (54.9%) Female 51 (45.1%) Years of experience Less than 5 years 10 (8.8%) 5–10 years 23 (20.4%) 10–20 years 34 (30.1%) More than 20 years 46 (40.7%) Location of practice Vancouver, British Columbia 60 (53.1%) Out of Vancouver 53 (46.9%) Training General practitioners 43 (38.1%) Paediatricians 56 (49.6%) Paediatric subspecialists 14 (12.3%) Percentage of practice time caring for paediatric patients with life-limiting diseases Less than 10% 90 (79.6%) Between 10% and 20% 14 (12.4%) Between 20% and 50% 0 More than 50% 1 (0.9%) No response 8 (7.1%) Current level of medical knowledge and experience (n=104) Very adequate 2 (0.96%) Adequate 41 (39.4%) Less than adequate 44 (42.3%) Not adequate 17 (16.3%) Adequacy of self-care experiences (n=99) Very adequate 11 (11.1%) Adequate 63 (63.6%) Less than adequate 18 (18.2%) Not adequate 7 (7.1%)
respondents had more than 10 years experience. Approximately half (53.1%) of the respondents were located within 50 km of the major city in the province. The remainder were equally dispersed throughout the province. Almost 80% of respondents spent less than 10% of their time caring for paediatric patients with lifelimiting disease. The type of service provided to children with progressive life-limiting disease was split with 29% providing consultative care only, 41% providing primary care only and 41% providing both consultative and primary care. On a five-point Lickert scale from very inadequate to very adequate, 40.1% of respondents felt their knowledge was adequate or very adequate. Paediatricians were more likely to report that their current medical knowledge and experience were adequate or very adequate to meet the needs of their paediatric palliative care patients as compared with family physicians (50.2% vs 32.6%). Overall, 73.5% 368
Box 1 Opics suggested for learning ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸
Clinical and symptom management Pain Nutrition Nausea Dyspnoea Trajectory Sedation at the end of life (terminal sedation) Psychosocial/family Bereavement Siblings: expected death and bereavement Spirituality Culturally appropriate care Psychological care of family and siblings Health services Special cases/populations (adolescents) How to handle new technology Access to services: bereavement, respite, counselling
of respondents reported that they would like to learn about the care of paediatric palliative care patients and their families ( paediatricians 82.8%, GPs 57.9%). Ninety-four per cent agreed with the statement that medical advances and technology have changed treatment of children with progressive life-limiting disease over the course of their practice. Respondents were asked to list what they thought were the three general educational needs for physicians around the topic of paediatric palliative care. Their responses are summarised in Box 1. Furthermore, respondents were asked to choose their preferred mode of learning about paediatric palliative care from six possible options. Fifty-three per cent of the respondents preferred that learning be offered remotely through either internet or correspondence with 29% reporting that weekend workshops are preferred. There was no difference in the mode of learning between paediatricians or family physicians (table 2). Respondents reported on the four-point Lickert scale that they felt they had very adequate (11%) or adequate (63%) self-care experiences to meet their own needs of well-being (table 1). In addition, 59% of respondents reported they would like to learn more about types of support for healthcare providers that care for children with progressive life-limiting
Table 2 Mode of learning desired (n=113) Weekend workshops Week-long seminar Monthly seminar Conference Internet learning Correspondence learning
33 1 12 7 36 24
(29.2%) (0.9%) (10.6%) (6.2%) (31.9%) (21.2%)
Straatman L, et al. BMJ Supportive & Palliative Care 2013;3:366–371. doi:10.1136/bmjspcare-2011-000058
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Education Box 2 Methods of caring for self ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸ ▸
Spiritual outlook on life Share responsibilities with colleagues Debrief with colleagues (formal or informal) Comfort from family/spouse Extracurricular activities Time off/holidays Healthy lifestyle Meditation Years of experience as a physician
diseases. Sixty-eight per cent of paediatricians and 45.3% of family practitioners wanted to learn more about support for themselves. Participants listed various ways in which they cared for themselves when dealing with paediatric palliative care patients (Box 2). DISCUSSION Paediatric palliative care is a rapidly growing area with more physicians realising the need for more knowledge. It is imperative to know what the gaps and opportunities are before embarking on education and physician support programmes for physicians. This survey provides a basis for modification of existing programmes and future programme design for practicing physicians. Similar to the survey of Farber and colleagues3 of adult palliative care with a response rate of 48%, this survey had a very good response rate of 56.5%. It is interesting to note that there was almost an equal response between men and women in the paediatric survey, unlike the survey of Farber and coworkers3 of adult palliative care, which had a substantial male population. This may reflect both the trend of more women in medicine and more women choosing specialties such as paediatrics and family practice.9 This survey also had representation from all areas of the province, and thus both rural and urban conditions of practice could be examined. Also to be noted is that a significant number of respondents had greater than 10 years of clinical practice. Recent guidelines have been published on the provision of palliative care for children by various organisations.10 11 As indicated in this survey, most paediatricians and family practitioners spend only a small amount of their clinical time caring for paediatric palliative care patients. Despite the small number of paediatric end of life patients in their practices, general paediatricians in particular wanted to become more educated in all aspects of providing end of life care. Unlike a study by Sheetz and Bowman12 which reported only 36% of physicians would likely attend training in paediatric palliative care, in this survey 82% of paediatricians and 57% of family practitioners
wanted to learn more. This may reflect the increased distances from tertiary care centres in British Columbia necessitating that both paediatricians and family practitioners provide more care in community settings than in the Sheetz and Bowman study12 which was limited to physicians in an urban setting. The higher percentage of paediatricians wanting to learn may be a consequence of their ongoing management of children with complex, rare life-threatening illness over a prolonged period of time and therefore an increased need and desire to learn more. Excellence in paediatric palliative care requires competency in multiple areas including recognising and assessing physical symptoms such as pain, psychological and spiritual distress and responding appropriately to the needs of the child and family. It is interesting to note that the learning needs suggested by the respondents to the questionnaire were the same 19 subject areas identified in the Avery and Lapwood6 study that were derived from an analysis of what ‘experts’ in the field of palliative care suggested as key educational needs. There are numerous reports that indicate physicians do not have adequate education to prepare them to provide end of life care to adults13 and children.14 Recently, palliative care education has been integrated into medical school and residency programmes including paediatric residency programmes.15 16 Notwithstanding this integration, Kolarik et al17 reported that despite paediatric residents caring for dying patients and participating in structured learning such as workshops they still felt only minimally able to treat symptoms at the end of life. While most physicians in this study had greater than 10 years in practice, most had not received paediatric palliative care training as part of their medical education or residency training. Programmes for learning paediatric palliative care have been designed. These programmes include comprehensive onsite courses such as the Initiative for Pediatric Palliative Care Curriculum18 19 and workshops20 at conferences. However, as indicated in this survey, many physicians would like to learn via the internet or correspondence as opposed to comprehensive onsite courses. Several investigators have demonstrated the effectiveness of online education in adult palliative care. Koczwara et al21 demonstrated that a 7.5-h online education programme for rural providers resulted in meeting the needs of 91% of respondents with 75% planning to review or change their practice. Studies have examined the effect of exposure to caring for patients,22 especially children at the end of life, on physicians and have suggested that this exposure may have detrimental effects on their physical and emotional well-being.23 24 The respondents in this survey reported adequate self-care through many different practices. Similar to other studies,25 the major sources of support cited included family members and friends. There were no differences noted in self-care
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Education practices by paediatricians or family practitioners. However, there was a trend towards family practitioners reporting their self-care was adequate more than paediatricians. Conversely, more paediatricians wanted to learn more about support and self-care strategies for healthcare providers. Not addressed in this study was the potential that exposure to paediatric end of life care may also have positive implications for personal growth, meaning in life and compassion satisfaction.26
2 3
4
Limitations
This study has some limitations. First, the data collected are all from self-reports by physicians; no attempt was made to assess the actual behaviours or knowledge competencies of the physicians involved with the paediatric palliative care population. In addition, the survey was anonymous; therefore, no comparative demographic data could be collected from those who did not respond. As paediatric palliative care is a multidisciplinary specialty, it involves nursing, social work and spiritual care. All of these allied health professionals have learning needs too and their learning may impact the role of the physician. This study was limited to physicians.
5
6
7
8
9
Future implications
Both physician groups in this study wanted to learn more about paediatric palliative care with more paediatricians than family physicians indicating an interest in learning more about paediatric palliative care. Both physician groups identified the same topic areas for learning and both groups expressed the preferred mode for learning being internet or correspondence learning. A curriculum should be designed based on these desires. Physicians have expressed their learning needs in paediatric palliative care and developing effective strategies to support their learning will be important in improving the quality of care delivery for children living with a progressive life-threatening illness and their families. In addition, self-care support services for physicians involved in caring for children with progressive life-limiting diseases need to be further developed especially for physicians in rural settings.
10
Contributors LS and TM equally participated in the conception and implementation of the study. LS wrote the first draft and all subsequent drafts were edited by both authors.
16
Funding Canuck Place Children’s Hospice Research Grant.
17
11
12
13
14
15
Competing interests None. Ethics approval This study was conducted with the approval of The University of British Columbia St Paul’s Hospital Ethics Review Board.
18
Provenance and peer review Not commissioned; externally peer reviewed.
19
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Paediatric palliative care: a survey of paediatricians and family practitioners Lynn Straatman and Tanice Miller BMJ Support Palliat Care 2013 3: 366-371 originally published online May 31, 2012
doi: 10.1136/bmjspcare-2011-000058 Updated information and services can be found at: http://spcare.bmj.com/content/3/3/366
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