Referral practices of pediatric oncologists to specialized palliative care

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1 Support Care Cancer (2014) 22: DOI /s ORIGINAL ARTICLE Referral practices of pediatric oncologists to specialized palliative care Kirsten Wentlandt & Monika K. Krzyzanowska & Nadia Swami & Gary Rodin & Lisa W. Le & Lillian Sung & Camilla Zimmermann Received: 3 December 2013 /Accepted: 4 March 2014 /Published online: 27 March 2014 # Springer-Verlag Berlin Heidelberg 2014 Abstract Purpose The aims of this study are to describe the attitudes and referral practices of pediatric oncologists (POs) to specialized palliative care (SPC), and to compare them with those of adult oncologists (AOs). Methods Canadian members of the American Society of Pediatric Hematology/Oncology (ASPHO), Canadian Association of Medical Oncologists (CAMO), Canadian Association of Radiation Oncologists (CARO), and the Canadian Society of Surgical Oncology (CSSO) participated in an anonymous survey assessing SPC referral practices. Results The response rate was 70 % (646/921), 52 % (43/82) for ASPHO members; 5 CARO members self-identified as POs, for a total of 48 POs and 595 AOs. Ninety-six percent of POs had access to inpatient SPC consultation services (vs. 48 % AOs), 31 % to a PCU (vs. 82 % AOs), and 27 % to an outpatient SPC clinic (vs. 73 % AOs). POs more often stated their SPC services accepted patients on chemotherapy than AOs (64 vs. 37 %, p=0.0004). POs were less likely to refer only after chemotherapy had been stopped (13 vs. 29 % for AOs) and more likely to state that ideally referral should occur at the diagnosis of cancer/incurable cancer (73 vs. 43 %). POs were more likely to agree they would refer earlier if palliative care were renamed supportive care (58 vs. 33 %, p<0.0001), that palliative care adds too many providers (17 vs. 7 %, p=0.002), and that palliative care was perceived negatively by their patients (60 vs. 43 %, p=0.02). Conclusions Although POs acknowledge the importance of early referral to SPC for children with cancer, there remain resource and attitudinal barriers to overcome in this regard. K. Wentlandt Department of Family and Community Medicine, University of Toronto, Toronto, Canada M. K. Krzyzanowska: C. Zimmermann Division of Medical Oncology and Hematology, Department of Medicine, University of Toronto, Toronto, Canada G. Rodin Department of Psychiatry, University of Toronto, Toronto, Canada K. Wentlandt: N. Swami : G. Rodin : C. Zimmermann Department of Psychosocial Oncology and Palliative Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada G. Rodin: C. Zimmermann Campbell Family Cancer Research Center, Ontario Cancer Institute, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada M. K. Krzyzanowska Department of Medical Oncology, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada L. W. Le Department of Biostatistics, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada L. Sung Department of Haematology/Oncology, The Hospital for Sick Children, Toronto, Canada K. Wentlandt (*) Toronto General Hospital, University Health Network, 9NU-925, 200 Elizabeth St, Toronto, ON M5G 2C4, Canada Kirsten.Wentlandt@uhn.ca

2 2316 Support Care Cancer (2014) 22: Keywords Pediatric oncology. Palliative care. Barriers to palliative care. Referral practices to palliative care Introduction Comprehensive pediatric cancer care requires the prevention and treatment of physical, psychosocial, and spiritual concerns, especially at the end of life. Despite significant advances in the treatment of children with malignancies, 20 % of these children will die of their disease [1], often with distressing symptoms and poor quality of life [2 5]. Specialized palliative care (SPC) services are well-equipped to respond to the needs of these patients but many children die without the support of such teams [6, 7]. This occurs despite international support of early integration of SPC in pediatric oncology. The World Health Organization has recognized that palliative care for children is the active total care of the child s body, mind, and spirit it begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease [8]. Other pediatric governing bodies have also mandated or supported the early integration of SPC services into a child s disease trajectory [9, 10]. Although early referral to SPC is increasingly recommended as the standard of care [11], referral to SPC for most adult cancer patients currently occurs in the last few months of life [12, 13]. Scant literature exists about the practice patterns and attitudes of pediatric oncologists regarding SPC referral. Pediatric oncology referral patterns are challenging to assess, as most referrals to pediatric SPC programs are for children with neurodegenerative conditions, genetic conditions, metabolic defects, congenital anomalies, and trauma [14, 15], whereas adult SPC referral is predominantly for patients with cancer. In addition, a variety of models of care exist as institutions have developed palliative care services based on the variable resources and expertise available to them [16 19], and in international studies, it has been described that many pediatric hospitals lack an accessible palliative care team [6, 20]. This study was part of a larger study, in which we surveyed Canadian pediatric and adult oncologists; the results regarding adult oncologists have been published elsewhere [13]. Adult oncologists referred frequently to SPC, but generally late in the disease course, for patients with uncontrolled symptoms. The main barriers preventing timely referral were availability of comprehensive SPC, especially for patients receiving chemotherapy, and the perception among some oncologists and their patients that palliative care was synonymous with end-of-life care. The aims of the current study were to describe the attitudes and referral practices of pediatric oncologists (POs) to specialized palliative care services (SPC) and to compare their practices and opinions with those of adult oncologists (AOs). Methods Survey sample All Canadian physician members of the American Society of Pediatric Hematology/Oncology (ASPHO), Canadian Association of Medical Oncologists (CAMO), Canadian Association of Radiation Oncologists (CARO), and Canadian Society of Surgical Oncology (CSSO) were eligible participants. Physician members were identified by each organization s 2010 directory, which represents the large majority of Canadian medical oncologists, radiation oncologists, surgical oncologists, and pediatric oncologists. Participants were contacted by and sent a hard copy of the questionnaire with a $5 gift certificate by post in March Participants completed the survey online or returned the hard copy via mail or fax. A follow-up survey was sent by and by post 3 weeks later. Because all responses were anonymous and we were unable to identify nonrespondents, all participants were approached four times. The study was reviewed and approved by the University Health Network research ethics board. Survey tool The survey tool was designed to assess the domains of physician demographics, training, and nature of oncology practice; availability and nature of SPC services; SPC referral practices; and opinions about SPC services. Demographic items were comprised of specialty, location of practice, sex, age, years of practice, training in palliative care, practice size, number of patient deaths per month, availability of a 24-h oncall service, and whether the physician did home visits. Questions about SPC services included availability and type of service (e.g., hospice, palliative care clinic, and palliative care unit), disciplines included in the palliative care team, and whether the SPC service accepted patients receiving ongoing chemotherapy and/or blood products (the latter were assessed by a Likert scale with items often, sometimes, rarely, never, and not known). SPC referral practice items incorporated specific scenarios looking at frequency and timing of referral in the cancer trajectory. Opinion items included satisfaction with SPC services, level of comfort providing end-of-life care, and perceptions about palliative care; these were assessed by a five-item Likert scale with anchors of strongly agree and strongly disagree. The questionnaire underwent pilot testing

3 Support Care Cancer (2014) 22: among a local sample of adult and pediatric oncologists (16 physicians in total). Table 1 Participant demographics Pediatric Adult p value Analyses Summary statistics were used to describe respondent characteristics and referral practices. Answers to the question How often do you refer the following patients to SPC? were summarized using descriptive statistics. Qualifiers for this question included uncontrolled symptoms, prognosis <1 year; uncontrolled symptoms, prognosis >1 year; symptom-free, prognosis <1 year; symptom-free, prognosis >1 year; terminally ill, requires discharge planning; terminally ill, spiritual concerns; terminally ill, psychological problems; and terminally ill, social problems. The exact Cochran-Armitage Trend test, or the exact Fisher s test, where appropriate, were used to compare outcomes from the questions How often do you refer your terminally ill patients to SPC?, Taking into account all possible reasons for referral, at what point in the cancer trajectory are your patients typically referred to SPC?, What is the typical life expectancy or prognosis of the patients you refer to SPC?, and In ideal circumstances, when is it appropriate to refer patients to SPC?. The same tests were used to compare oncologists attitudes towards SPC. Results Sample characteristics Surveys were sent to 921 physicians (82 ASPHO members, 360 CAMO members, 358 CARO members, and 121 CSSO members). A total of 646 completed surveys (43 ASPHO, 226 CAMO, 302 CARO, and 75 CSSO members) were returned, for a total response rate of 70 % (52 % for ASPHO, 63 % CAMO, 84 % CARO, and 62 % CSSO). Five members of CARO were self-identified on their completed surveys as specializing in pediatric oncology, and were included for analysis with the pediatric group, for a total of 48 pediatric oncologists (POs) and 595 adult oncologists (AOs). Characteristics of the respondents are summarized in Table 1. The age distribution and years in practice were balanced and similar for the pediatric and adult oncologists surveyed, but there were more men in the adult group. In both groups, the majority (>80 %) practiced in an academic setting. Fewer POs than AOs reported that they had completed a rotation in palliative care as part of their medical or oncology training (26 vs. 51 %, p= ). POs were less likely than AOs to report that at least one patient in their practice died per month (25 vs. 72 %, p<0.0001), but were more likely to report that they sometimes visited patients at home (31 vs. 5 %, p<0.0001). Characteristic n % n % Gender 0.22 Male Female Age (years) 0.78 < Primary work place Academic hospital Community hospital Academic cancer center Nonacademic cancer center Private practice Years since residency/fellowship year year year >20 year Completed a palliative care rotation during residency/fellowship No Yes Number of practice patients that die < per month < > Provide patient home visits < No Yes Availability of specialized palliative care services POs reported excellent access to inpatient palliative care consultation, with 96 % reporting that they had access to such a service (Table 2). However, only 31 % reported having access to a palliative care unit for their patients (vs. 82 % of AOs) and only 27 % reported having access to an outpatient palliative care clinic (vs. 73 % of AOs). Although 85 % of POs had access to a palliative care nurse, and 90 % to a palliative care physician, only 71 % had access to an oncology psychiatrist or psychologist, and only 29 % had access to a social worker specializing in palliative care (Table 2). More than 73 % of POs agreed or strongly agreed that they were satisfied with availability, and more than 83 % with the quality of SPC services available to them. POs were more likely than AOs to report that the SPC services that were available to them

4 2318 Support Care Cancer (2014) 22: Table 2 Availability of palliative care services Pediatric Adult Pediatric Adult SPC service n % n % P value SPC discipline n % n % P value PCU in hospital Palliative care physician Hospice Palliative care nurse Outpatient SPC clinic Oncology psychiatrist or psychologist Pain clinic Oncology social work SPC home visits Palliative social work Inpatient palliative care consults accepted patients on chemotherapy (64 vs. 37 %, p=0.0004) and patients receiving transfusions (79 vs. 42 %, p<0.0001). Referral practices More than 83 % of POs indicated that they always or usually referred their terminally ill patients to SPC services (Table 3). POs reported that they predominantly Table 3 Frequency and timing of referral to specialized palliative care by pediatric and adult oncologists Pediatric Adult p value Item n % n % Frequency of SPC referral for 0.48 terminally ill patients Always Usually Sometimes Rarely Never Timing of typical referral 0.01 At diagnosis of cancer or metastatic disease or during the course of chemotherapy After chemotherapy or transfusions has been stopped Life expectancy of patients referred to 0.76 SPC >1 year >6 months 1 year months <1 month Ideal timing of SPC referral < At diagnosis of cancer regardless of prognosis At diagnosis of incurable cancer >1 year of life >6 months 1 year of life months of life <1 month of life referred at the diagnosis of metastatic disease, or during the course of chemotherapy (40.4 and 46.8 %, respectively), with only 13 % stating that they tended to refer after chemotherapy or transfusions had been stopped (vs. 30 % of AOs, p =0.01). However, more than 85 % of POs stated that they typically referred to SPC when their patients prognosis was 6 months or less. When asked to identify the ideal time to refer patients to SPC, POs were significantly more likely than AOs to indicate that this should be at the time of diagnosis of incurable cancer (p<0.0001). Similar to AOs, almost 90 % of POs stated that they would always or usually refer patients with uncontrolled symptoms and a prognosis of less than 1 year, although this percentage fell to 57 % if the prognosis was more than 1 year (Fig. 1). Less than 50 % of POs would refer a symptom-free patient, even if the prognosis was less than 1 year, but were more likely to do so than AOs (p=0.02). Similar to AOs, POs stated they referred frequently to SPC for discharge planning, but made fewer referrals for spiritual concerns, and referred even less frequently than AOs for social or psychological problems (p=0.02). Attitudes toward SPC referral POs were more likely than AOs to indicate that they would refer to SPC earlier if it was renamed supportive care (58 vs. 33 %, p=0.0001; Table 4), although less than 10 % of physicians in both groups acknowledged feeling uncomfortable referring their patients to SPC unless they were close to death. Similar to adult oncologists, most POs (68 %) enjoyed treating patients at end of life, and only 37 % were comfortable providing palliative care. Although only 17 % believed referral to SPC would add too many care providers, this attitude was more prevalent in this group than in AOs, of whom only 7 % agreed with this statement (p=0.002). POs were more likely to believe that their patients had negative perceptions of SPC than their adult counterparts (60 vs. 43 %, p=0.02), but very few oncologists in both groups reported that their patients refused referral.

5 Support Care Cancer (2014) 22: Fig. 1 Referral patterns of oncology patients. *Denotes statistical significance; P pediatric oncologists, A adult oncologists 60% 50% 40% 30% 20% 10% Never Rarely Sometimes Usually Always P A P A prognosis > 1 yr* prognosis < 1 yr* Symptom-free P A P A prognosis > 1yr prognosis < 1yr Uncontrolled Symptoms 0% 60% 50% 40% 30% 20% 10% Never Rarely Sometimes Usually Always P A P A P A P A 0% spiritual concern social problem* psychological problem* discharge planning Terminally ill Discussion The aim of this study was to describe referral practices and attitudes of pediatric oncologists to SPC, and to compare these practices and opinions with those of adult oncologists. Overall, referral patterns were similar to those for AOs, with oncologists tending to refer in the last 6 months of life; however, most POs indicated that ideally, referral should occur earlier, at the diagnosis of incurable cancer. A majority of POs felt their patients had negative perceptions of SPC and that a name change to supportive care would increase their likelihood of earlier referral. The results of this survey provide direction for the planning of SPC services for children with cancer and for future research in this area. The large majority of POs had access to some form of SPC service, and was satisfied with the availability and quality of this service. The availability of SPC services reported by POs in this study is higher than that cited in previous international literature [6, 7], but similar accessibility was reported in a 2001 survey of POs in the Canadian healthcare system [21]. Of note, the high level of access to SPC in the present study was mostly in the form of inpatient consultation services. Specialized palliative care units and outpatient palliative care clinics were available to less than 35 % of POs, although the majority of AOs had access to such services. Ambulatory outpatient provision of palliative care enables earlier and more collaborative involvement of SPC [13, 22, 23], and the lack of available outpatient SPC for children with cancer is an obvious barrier to referral that has been described internationally [7]. Reasons for referral for POs were similar to those of AOs. POs were most likely to make referrals for patients with uncontrolled symptoms and a short prognosis, or for discharge planning, and least likely to refer for psychological, social, and spiritual concerns. POs were more likely to refer for symptom-free patients than AOs, though less than half of POs would refer in this setting. Anticipation of future symptom burden or the need to establish linkages with SPC services for the family may play a role in this referral pattern. The tendency not to refer to SPC for psychosocial needs may reflect these needs being met elsewhere, as over 98 % had access to a social work service through the oncology program, and they may have had established relationships with this team. A previous

6 2320 Support Care Cancer (2014) 22: Table 4 Attitudes of pediatric and adult oncologists to specialized palliative care Oncologists attitudes towards SPC Pediatric Adult p value n (%) n (%) N=48 N=595 Adds too many additional care providers Strongly agree/agree 8 (16.7) 37 (6.6) Neutral 9 (18.8) 60 (10.7) Disagree/strongly disagree 31 (64.6) 466 (82.8) More likely to refer earlier if it is renamed as supportive care Strongly agree/agree 28 (58.3) 183 (32.6) Neutral 13 (27.1) 180 (32.1) Disagree/strongly disagree 7 (14.6) 198 (35.3) Patients decline/refuse PC referral Strongly agree/agree 2 (4.2) 43 (7.7) 0.57 Neutral 17 (35.4) 100 (17.8) Disagree/strongly disagree 29 (60.4) 418 (74.5) Patients have negative perceptions of palliative care Strongly agree/agree 29 (60.4) 242 (43.1) 0.02 Neutral 11 (22.9) 177 (31.5) Disagree/strongly disagree 8 (16.7) 143 (25.4) Referral to PC is an abandonment of patients Strongly agree/agree 1 (2.1) 12 (2.1) 0.81 Neutral 3 (6.3) 25 (4.4) Disagree/strongly disagree 44 (91.7) 527 (93.4) Uncomfortable referring patients to PC until they are close to death Strongly agree/agree 3 (6.3) 25 (4.4) 0.41 Neutral 4 (8.3) 31 (5.5) Disagree/strongly disagree 41 (85.4) 506 (90.0) Enjoy treating patient at end of life Strongly agree/agree 32 (68.1) 316 (56.3) 0.15 Neutral 9 (19.2) 152 (27.1) Disagree/strongly disagree 6 (12.8) 93 (16.6) Comfortable providing palliative care Strongly agree/agree 18 (37.5) 242 (43.2) 0.38 Neutral 15 (31.3) 176 (31.4) Disagree/strongly disagree 15 (31.3) 142 (25.4) SPC specialized palliative care, PC palliative care international study indicated that more than 80 % of POs had access to a psychosocial support team [7], but it is unclear whether this included nurses, social workers, psychiatrists, or psychologists, and whether these teams were specialized or educated in palliative care. A large majority of POs indicated they referred their terminally ill patients to SPC services, but they tended to do so at a prognosis of less than 6 months. This tendency to refer in the last months of life was similar to AOs, but only 13 % of POs indicated that they would refer after stopping all chemotherapy, compared to more than twice that percentage for AOs. This pattern in POs of referral during continued chemotherapy treatment is likely due to the tendency for aggressive inpatient treatment at the end of life in pediatric settings, and due to SPC services for children (which were mostly inpatient consultation services) being more likely to allow concomitant chemotherapy and transfusions. Parents of children with cancer tend to prioritize aggressive treatment, even at the end of life [24 26], and many children receive such treatment late in the disease course [27 29]. SPC teams can help both children and their families by focusing on quality of life while taking into account goals of care defined by the patient and family [30, 31]. POs in this study were more likely than AOs to agree that patients should ideally be referred at the diagnosis of incurable cancer, rather than later in the disease course. On the other hand, PO attitudes towards palliative care were cautious, with a larger minority than in the AO group feeling that referral to SPC added too many providers, and a majority believing their patients had negative perceptions of palliative care. While one third of AOs stated that a name change to supportive care would increase their likelihood of referral, this was the case for almost 60 % of POs. Previous studies have identified parents and families reluctance to accept SPC as a major barrier to such care [32, 33]. Parents have a strong influence on their child s care and may desire the continuation of treatment aimed at cure, even when this is unrealistic; in some cases, oncologists may order palliative chemotherapy based primarily on parents wishes rather than on the potential to decrease disease or symptom burden [34]. The name palliative care for many people may denote end-of-life care, which may be even less acceptable in pediatric populations due to the

7 Support Care Cancer (2014) 22: strong focus on continued treatment and the difficulty of accepting the death of a child [24, 32, 35, 36]. Some SPC programs have changed their program name to supportive care or pediatric advanced care team in order to enhance patient and family acceptance and physician referral [37 40]. An alternative is continued education regarding the relevance of principles of palliative care throughout the course of the illness [10]. This study has strengths and limitations. Our overall response rate of 71 % compares favorably with that of approximately 54 % in other physician surveys [41, 42], but the response rate from the pediatric oncologists was much lower (52 %) than for their adult counterparts. It is possible that those POs who responded may be more willing to refer early or may be more aware of services. Due to privacy policies and the anonymization of data, we were unable to compare demographic characteristics of respondents and nonrespondents. Participants were sent multiple copies of the survey, and we were unable to control for a respondent replying several times. However, due to the length of the survey and the narrow time interval between survey deliveries, it is unlikely that a respondent completed the survey more than once. Response bias is also possible in that oncologists who are aware of practice recommendations regarding SPC referral may be unwilling to admit that they infrequently refer, although the discrepancy between ideal and reported referral rates suggests that this is unlikely. This study is a survey of self-described behaviors rather than documenting actual referral practices. As well, data was not collected from patients, and the information concerning the accessibility of SPC services may reflect the physician s overall practice, rather than the most disadvantaged patients. It has been recommended that palliative care be offered to all children with cancer and that it be introduced early in the disease course or at the time of diagnosis, especially for those unlikely to be cured [43]. However, this may be particularly difficult to actualize in pediatric SPC, where there remains a strong focus on cure even when the likelihood is miniscule [24, 29]. Although pediatric SPC service models have tended to be based upon existing adult models [14, 16], there are unique features that need to be integrated into models of SPC designed specifically for children, including the need to take into account the unique role of the parent as the main decision maker [44]. Findings from this study show that although POs acknowledge the importance of early referral to SPC for children with cancer, SPC in pediatric oncology remains underresourced and misunderstood. 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