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Journal of Clinical Oncology, Vol 26, No 28 (October 1), 2008: pp. 4646-4650 © 2008 American Society of Clinical Oncology. DOI: 10.1200/JCO.2008.16.1562 Availability and Use of Palliative Care and End-of-Life Services for Pediatric Oncology Patients
From the Division of Pediatric Hematology/Oncology, Children's Hospital of Eastern Ontario, Ottawa; Division of Pediatric Hematology/Oncology, Hamilton Health Sciences, Hamilton, Ontario, Canada; Division of Pediatric Hematology/Oncology, Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, Seattle, WA; Department of Preventive and Societal Medicine, University of Nebraska Medical Center, Omaha, NE; Maine Children's Cancer Program and the Division of Pediatric Oncology at the Barbara Bush Children's Hospital, Division of Palliative Care, ME Medical Center, Scarborough, ME; and Divisions of Pediatric Palliative Care and Pediatric Hematology/Oncology, Akron Children's Hospital, Akron, OH Corresponding author: Donna L. Johnston, MD, Division of Hematology/Oncology, Children's Hospital of Eastern Ontario, 401 Smyth Rd, Ottawa, ON K1H 8L1, Canada; e-mail: djohnston{at}cheo.on.ca
Purpose Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We sought to investigate the current practices and resources surrounding palliative and end-of-life care among participating institutions of the Children's Oncology Group (COG). Methods A survey regarding practices and resources was developed by the COG palliative care subcommittee and was sent to all 232 institutions to complete for the calendar year 2005. Results The survey was completed by 81% of the institutions. Per institution, there were a mean of 64.6 newly diagnosed patients and 17.7 patients experiencing relapse. A palliative care team was available in 58% of institutions, a pain service in 90%, a hospice in 60%, a psychosocial support team in 80%, and a bereavement program in 59%. Complementary and alternative medicine was available in 39% of institutions and in 95% of the COG institution's community. Most services, even when available, were not well used by patients. Conclusion Despite the well-established benefit of pediatric palliative care, it is only offered in 58% of COG institutions caring for children with cancer. In an era where the benefit of palliative care has been clearly established, this number should approach 100%. Efforts should be directed toward understanding barriers to provision of such services, so that they are available and well used at all childhood cancer centers.
Palliative care is a comprehensive system of care aimed at preventing or relieving the symptoms or suffering caused by life-threatening medical conditions.1 Cancer, a life-threatening medical condition, is the fourth leading cause of death among children between the ages of 1 and 19 years and is the leading cause of disease-related death in children.1,2 Some experts recommend that palliative care be offered to all children with a diagnosis of cancer3 and that it be introduced at the time of diagnosis, especially in malignancies with a low likelihood of cure.4 When and to whom palliative care is introduced remains a subject of controversy among pediatric oncology practitioners. There is consensus, however, that palliative care can help relieve symptoms in a child with an incurable malignancy, whether at diagnosis or during relapse.1,3,5 We undertook this study to investigate the current practices and resources surrounding palliative and end-of-life care in pediatric oncology among participating institutions of the Children's Oncology Group (COG). COG is an international cooperative research organization devoted to the development of new treatments and cures for the cancers of infants, children, adolescents, and young adults. COG membership includes more than 5,000 pediatric cancer specialists, located at 232 member institutions across the United States, Canada, Australia, New Zealand, Switzerland, and the Netherlands. At each member institution, there is a multidisciplinary team with expertise in state-of-the-art diagnosis and management of pediatric and adolescent oncology patients enrolled onto therapeutic and nontherapeutic protocol studies. A similar survey was previously administered in Canada to all 17 pediatric hematology/oncology centers during the calendar year 2001, and results showed that despite extensive available palliative care and end-of-life services, there was significant underuse of these services.6 The results of this larger international study will provide a framework for establishing guidelines for palliative and end-of-life care for children with cancer, will guide future research efforts in this area, and will guide the development of interventions to correct any inadequacies.
A survey exploring the institutional practices and resources surrounding palliative and end-of-life care was developed by the authors, with input from a multidisciplinary subcommittee of the COG palliative care task force with expertise in end-of-life care for pediatric oncology patients. For the purpose of this survey, palliative care was defined as care that seeks to prevent or relieve the symptoms produced by a life-threatening medical condition or its treatment, to help patients with such conditions and their families live as normally as possible, and to provide them with timely and accurate information and support in decision making.1 The survey included questions on the patient population: incidence of patient deaths, approach to palliative care, and availability of services, including palliative care team, pain service, hospice service, psychosocial support team, bereavement program, and home care services. The survey was first pretested with a subset of professionals from the COG palliative care task force. Pilot respondents were asked to identify items that were ambiguous or otherwise poorly worded, were impractical with respect to time constraints to obtain meaningful data, or required information that could not be retrieved accurately. They also assessed the overall time required to complete the questionnaire to assess feasibility. On the basis of these responses, the survey was refined and piloted among 10 institutions varying by geographic location, size, and ethnic composition in the COG to identify any consistent areas of nonresponse, ambiguity, or questions that were not answered well. Minor revisions were made based on the pilot, forming the final version used for the study. Some questions in the survey could have multiple responses depending on services or professionals involved in the topic being assessed, resulting in percentages for each question that could total more than 100%. The survey was then sent to the 232 principal investigators (PIs) and clinical research associates (CRAs) at each COG institution. The survey was sent via e-mail and was administered through COG. The survey was to be completed by the PI or his/her designee, using other institutional support such as CRA or nurses if required. Respondents answered the survey questions based on the period from January 1 to December 31, 2005, the last full calendar year before the initiation of the survey. The survey was completed online or faxed to the study coordinator, who then entered the data electronically. The survey was not patient-specific but determined specific services available at institutions and how these services were used; therefore, approval of local institutional review boards was not required. Institutional surveys were collated, and the data were descriptively reported with percentages tallied for each response, using the denominator of total responses for the individual item. Additionally, the associations between presence and absence of a palliative care team with institutional characteristics were examined using Fisher's exact tests.
The survey was completed by a representative in 187 of the 232 institutions (81% response rate) in the COG. Per institution, there were a median of 45 newly diagnosed patients (range, 0 to 426 patients), seven patients experiencing relapse (range, 0 to 147 patients), and eight patients who died (range, 0 to 80 patients) during the 12-month reporting period. Of the patients who died, a median of one were receiving therapy with intent to cure at the time of their death (range, 0 to 25 patients), and a median of two patients had sustained a relapse (range, 0 to 57 patients). A palliative care team was available at 58% of institutions. The team was used by a median of three patients/institution with newly diagnosed malignancy (range, 0 to 50 patients) and 0 patients/institution with relapsed malignancy (range, 0 to 42 patients). The source of referrals for this and other services are shown in Figure 1 and use in Figure 2. The discussion about palliative care was initiated by a physician in the majority of cases (93%), followed by midlevel practitioner (47%), nurse (44%), and parent (40%). These discussions were begun at the time of relapse in 54%, after relapse therapy failed in 53%, or when a family member asked the question in 26% of institutions surveyed. Nineteen percent of institutions discussed palliative care after initial therapy failed, and 6% discussed palliative care at diagnosis.
Patients receiving palliative care often continued to meet eligibility criteria for therapeutic clinical trials. However, the internal policy of institutions surveyed reported not being able to enroll these patients onto phase I studies 2% of the time, onto phase II studies 4% of the time, and onto phase III studies 17% of the time. If patients eligible for clinical trials were actively enrolled in hospice, 11% of institutions surveyed would not enroll these patients onto phase I studies, 28% would not enroll hospice patients onto phase II studies, and 33% were unable to enroll hospice patients onto phase III studies. However, institutions continued to offer blood product support or chemotherapy for many children in hospice care (57% and 45%, respectively). For some institutions, this depended on the individual hospice policies regarding blood products and chemotherapy (32% and 36%, respectively). The members of the palliative care program included physicians in 91% of institutions, social workers in 78%, spiritual care workers in 70%, nurses in 60%, midlevel practitioners in 59%, bereavement counselors in 39%, psychologists in 37%, volunteers in 27%, expressive therapists in 26%, nutritionists in 21%, and child life workers in 10%. A separate pain service was present in 90% of the institutions and was used by a median of two patients/institution with newly diagnosed malignancy (range, 0 to 72 patients) and one patient/institution with malignancy in relapse (range, 0 to 151 patients). This service was managed by anesthesiology in the majority of institutions (75%) and was staffed by physicians (86%), midlevel practitioners (50%), and nurses (37%). A hospice service was available in 65% of institutions and was used by a median of three patients/institution with newly diagnosed malignancy (range, 0 to 25 patients) and 0 patients/institution with malignancy in relapse (range, 0 to 15 patients). The hospice service was based as a hospital inpatient service in 18% of institutions, hospital outpatient in 19%, an out-of-hospital inpatient in 15%, and an out-of-hospital outpatient (community-based) in 42%. The hospice service was staffed mainly by physicians (54%), nurses (50%), social workers (50%), and spiritual care workers (49%). Psychosocial support teams were available in 80% of institutions and were dedicated to pediatric oncology patients in 81% of these centers. This team was used by a median of seven patients/institution with newly diagnosed malignancy (range, 0 to 93 patients) and a median of 29 patients/institution with relapsed malignancy (range, 0 to 335 patients). These teams were staffed by social workers (84%), spiritual care workers (46%), and psychologists (46%). Fifty-nine percent of institutions had bereavement programs. Fifty-six percent of all COG oncology centers had bereavement programs dedicated to pediatric oncology families. A median of three patients/institution with newly diagnosed malignancy (range, 0 to 70 patients) and 0 patients/institution with relapsed malignancy (range, 0 to 109 patients) used available bereavement programs. Bereavement program staff was composed of social workers (77%), spiritual care workers (58%), and nurses (49%). The bereavement programs provided staff education in 69% of the centers and provided staff support services in 68% of the institutions. Home care services were used by a median of five patients/institution with newly diagnosed malignancy (range, 0 to 70 patients) and a median of 17 patients/institution with malignancy in relapse (range, 0 to 250 patients). The home care services provided include nursing (33%), patient-controlled anesthesia (29%), intravenous infusions (22%), transfusions (9%), and others. Complementary and alternative medicine (CAM) therapies were offered in 39% of institutions and were available in 95% of the communities that these institutions serve. Of the 50 institutions that offered CAM therapies, 76% of the oncology divisions made direct referrals for these therapies. Only 9.5% of the centers had a divisional or departmental policy regarding the use of CAM therapies. In the institutions with CAM therapies, these were offered by therapists (56%), physicians (47%), acupuncturists (35%), and nutritionists (34%). Only 17% of the oncology programs made direct referrals for CAM therapies in the community. The CAM therapists available in the community included acupuncturist (75%), naturopathic physicians (64%), nutritionists (60%), and therapists (55%). Institutions with a palliative care team were more likely to offer CAM therapies (P = .03) and have a pain service (P = .02) compared with the institutions without a palliative care team (Table 1). There was marginal evidence that institutions with a palliative care team were more likely to have a psychosocial support team (P = .06) compared with institutions without a psychosocial support team. There was no association between the presence of a palliative care team and hospice services, bereavement programs, or home care services.
Palliative care prevents or relieves symptoms caused by a life-threatening medical condition.1 This important system of comprehensive care, though, is not readily or widely available in pediatrics. We found that 58% of COG institutions have a palliative care team. Although this represents an improvement from a 1998 American Society of Clinical Oncology survey where only 36% of pediatric oncology centers had access to a palliative care team,7 it is much lower than the 88% found in a 2001 survey of Canadian pediatric oncology centers.6 Clearly, the finding that formalized palliative care services are available in fewer than 60% of COG institutions falls far short of meeting the 2000 American Academy of Pediatrics guidelines, which state that all children need access to competent and compassionate palliative care.4 These guidelines also recommend that palliative care be available to provide intensive symptom management to promote the welfare of children who are living with life-threatening or terminal conditions.4 As architects of high-quality pediatric oncology care, it is imperative that we strive to establish palliative care in all COG centers to meet these important guidelines. An important aspect of the delivery of palliative care is the timing of this discussion with patients and their families.8 We found that the discussion about palliative care occurs most often at the time of relapse or when relapse therapy fails, but rarely after initial therapy fails or at diagnosis. The established American Academy of Pediatrics guidelines for the introduction of palliative care recommend that an integrated model of palliative care be offered at the time of diagnosis of a life-threatening condition, which continues throughout the course of the illness, regardless of the outcome.4 We agree with the introduction of palliative care early in the course of the illness to ensure that this crucial spectrum of care is not brought in at the last minute. By introducing the concept early in the illness, care of all symptoms experienced by these children can be more effectively and seamlessly managed. Parents play a major role in the treatment of their children and are becoming increasingly empowered in this role. We examined the sources of referrals to the various teams and found that parents were at most able to refer their children to these services in only 50% of institutions. Psychosocial support team and palliative care team could be accessed by parents directly in approximately half of the institutions surveyed. Other services (ie, pain service, hospice service, and home care) could be accessed by parents much less frequently. A landmark study examining symptoms and suffering at the end-of-life demonstrated that parents were more likely than physicians to identify fatigue, poor appetite, constipation, and diarrhea in their child, despite having no voice as to when a child should be referred in 50% of institutions.9 Care is optimized when parents and physicians work together, and good communication between parents and the care team unambiguously improves the care the child receives.10,11 Parents continually strive for the best care possible for their children, and being able to refer their child to palliative or end-of-life care services can only benefit the child. Parents also desire cancer-directed therapy for their child despite the advanced stage of the disease.11,12 This study showed that the majority of institutions allowed children to both receive chemotherapy and be enrolled onto clinical trials while also receiving palliative care, which is a reassuring finding. Service use is another important aspect of palliative and end-of-life care. A median of 45 newly diagnosed patients and seven patients per institution experienced relapse during the study period, and a median of eight patients per institution died. The palliative care team was used by a median of three newly diagnosed patients and 0 patients with relapse/institution. As far as the other services are concerned, the median combined usage (newly diagnosed plus patients experiencing relapse) was three patients for pain service, three patients for hospice, 36 patients for psychosocial support service, three patients for bereavement program, and 22 patients for home care services. Psychosocial support team and home care are high based on high number of patients experiencing relapse using the service, likely representing patients who experienced relapse before the start of the survey but still used the services, something not seen with the other services. Palliative care, pain service, hospice, and bereavement programs seem to be underused based on these data. In the previous study of Canadian institutions, these services were available but were significantly underused,6 and this remains the case for all but psychosocial support and home care in this larger spectrum COG study. This may be due to misunderstanding the role of palliative care or a lack of education in this field and definitely identifies a major area in need of attention. Although pain services were present in 90% of institutions, palliative care team and bereavement programs were available in fewer than 60% of centers. The availability of these services is similar to that in the 1998 American Society of Clinical Oncology survey where a pain service was available in 70%, psychosocial support team in 71%, home hospice in 78%, and hospital-based hospice in 39%.7 The only increases seen were in the percentage of centers with a palliative care team (57% v 36%) and pain service availability (90% v 70%). Specific recommendations exist regarding what services should be provided for children with cancer, and these include excellent symptom control, direct patient care, psychosocial support, bereavement, and outreach services.13 Known constraints to providing optimal end-of-life care include a lack of universal health care coverage, a lack of appropriate reimbursement, a lack of experienced clinicians in providing end-of-life services, and hospice-specific limitations.14 These limitations and others need to be overcome so that all services are available to all children at the end of life. Another finding was that CAM therapies were available in 39% of hospitals and 95% of communities. Despite this, only 10% of institutions have a policy on the use of CAM. With the widespread use of CAM therapy,15-19 it would be prudent and advisable for institutions to develop policies on the use of CAM therapies to ensure patient safety.20,21 Institutions with a palliative care team were significantly more likely to have increased availability of CAM therapies and a pain service. They also were more likely to have psychosocial support teams. This finding implies that those institutions with a palliative care team are more likely to offer other services that benefit patients at the end of life. There are some limitations of this study, which must be considered. These include a bias by centers without a palliative care team to not respond to the survey, which would mean the 58% availability is higher than the true value. Also, because the questionnaire was completed by the PI/CRA, the results are dependent on their knowledge of the institution, understanding of the questions, and access to the information. We feel though these were the best individuals to answer the questions or seek personnel with the answers. In conclusion, formal palliative care is currently offered in only 58% of institutions caring for pediatric oncology patients. In an era where the benefit of palliative care has been clearly established, this number should approach 100%, and we must strive to reach this goal. Although the exact timing of palliative care introduction remains controversial, it is clear that pediatric oncology patients represent a patient cohort who can benefit from the early introduction of comprehensive palliative care services, regardless of the outcome of cure-directed therapy. Also, most end-of-life services, when available, were not well used by pediatric oncology patients, which is an aspect that clinicians must strive to correct.
The author(s) indicated no potential conflicts of interest.
Conception and design: Donna L. Johnston, Kim Nagel, Debra L. Friedman, Craig A. Hurwitz, Sarah Friebert Administrative support: Kim Nagel, Craig A. Hurwitz, Sarah Friebert Provision of study materials or patients: Donna L. Johnston, Kim Nagel, Debra L. Friedman, Craig A. Hurwitz, Sarah Friebert Collection and assembly of data: Donna L. Johnston, Kim Nagel, Jane L. Meza Data analysis and interpretation: Donna L. Johnston, Kim Nagel, Debra L. Friedman, Jane L. Meza, Craig A. Hurwitz, Sarah Friebert Manuscript writing: Donna L. Johnston, Kim Nagel, Debra L. Friedman, Jane L. Meza, Craig A. Hurwitz, Sarah Friebert Final approval of manuscript: Donna L. Johnston, Kim Nagel, Debra L. Friedman, Jane L. Meza, Craig A. Hurwitz, Sarah Friebert
Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.
1. Field MJ, Behrman R: When children die: Improving palliative and end-of-life care for children and their families. Washington, DC, National Academies Press, 2003, pp 19-71 2. Landis SH, Murray T, Bolden S, et al: Cancer statistics, 1999. CA Cancer J Clin 49:8-31, 1999 3. Himelstein BP, Hilden JM, Boldt AM, et al: Pediatric palliative care. N Engl J Med 350:1752-1762, 2004 4. Nelson RM, Botkin JR, Kodish ED, et al: Palliative care for children. Pediatrics 106:351-357, 2000 5. Smith TJ, Bodurtha JN: Ethical considerations in oncology: Balancing the interests of patients, oncologists, and society. J Clin Oncol 13:2464-2470, 1995 6. Johnston DL, Nagel K, O'Halloran C, et al: Underutilization of palliative care resources for pediatric oncology patients in Canada: Results of a Children's Oncology Group Palliative Medicine Committee survey. Support Palliat Cancer Care 3:77-82, 2007 7. Hilden JM, Emanuel EJ, Fairclough DL, et al: Attitudes and practices among pediatric oncologists regarding end-of-life care: Results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol 19:205-212, 2001 8. Himelstein BP: Palliative care in pediatrics. Anesthesiol Clin North America 23:837-856, 2005[CrossRef][Medline] 9. Wolfe J, Grier HE, Klar N, et al: Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342:326-333, 2000 10. Mack JW, Hilden JM, Watterson J, et al: Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23:9155-9161, 2005 11. Wolfe J, Klar N, Grier HE, et al: Understanding of prognosis among parents of children who died of cancer. JAMA 284:2469-2475, 2000 12. Bluebond-Langner M, Belasco JB, Goldman A, et al: Understanding parents’ approaches to care and treatment of children with cancer when standard therapy has failed. J Clin Oncol 25:2414-2419, 2007 13. Friedman DL, Hilden JM, Powaski K: Issues and challenges in palliative care for children with cancer. Curr Pain Headache Rep 9:249-255, 2005[CrossRef][Medline] 14. Hurwitz CA, Duncan J, Wolfe J: Caring for the child with cancer at the close of life. JAMA 292:2141-2149, 2004 15. Martel D, Bussieres J-F, Theoret Y, et al: Use of alternative and complementary therapies in children with cancer. Pediatr Blood Cancer 44:660-668, 2005[CrossRef][Medline] 16. Fernandez CV, Stutzer CA, MacWilliam L, et al: Alternative and complementary therapy use in pediatric oncology patients in British Columbia: Prevalence and reasons for use and nonuse. J Clin Oncol 16:1279-1286, 1998 17. Bold J, Leis A: Unconventional therapy use among children with cancer in Saskatchewan. J Pediatr Oncol Nurs 18:16-25, 2001 18. Neuhouser ML, Patterson RE, Schwartz SM, et al: Use of alternative medicine by children with cancer in Washington state. Prev Med 33:347-354, 2001[CrossRef][Medline] 19. Kelly KM, Jacobson JS, Kennedy DD, et al: Use of unconventional therapies by children with cancer at an urban medical center. J Pediatr Hematol Oncol 22:412-416, 2000[CrossRef][Medline] 20. Ernst E: Serious adverse effects of unconventional therapies for children and adolescents: A systematic review of recent evidence. Eur J Pediatr 162:72-80, 2003[Medline] 21. Ernst E: Competence in complementary medicine. Complement Ther Med 3:6-8, 1995[CrossRef] Submitted January 10, 2008; accepted May 27, 2008.
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Copyright © 2008 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
