|
Advertisement |
|
|
||
 |
|
|||||
|
|||||
|
 |
||||||
|
||||||
|
||||||
|
Journal of Clinical Oncology, Vol 24, No 7 (March 1), 2006: pp. 1099-1104 © 2006 American Society of Clinical Oncology. DOI: 10.1200/JCO.2005.02.6591 Hospice Referral Practices for Children With Cancer: A Survey of Pediatric OncologistsFrom the Department of Hematology Oncology, University of Alabama, Birmingham, AL; Departments of Hematology Oncology, Pediatrics, and Biostatistics, Vanderbilt University Medical Center; and Alive Hospice, Nashville, TN. Address reprint requests to Haydar Frangoul, MD, Vanderbilt University, 397 PRB, Nashville, TN 37232-2573; e-mail: Haydar.Frangoul{at}Vanderbilt.edu
PURPOSE: To examine hospice referral patterns among pediatric oncologists and identify barriers to referral. METHODS: A self-administered survey was sent to 1,200 pediatric oncologists who are members of Children's Oncology Group. Two electronic mail messages followed by traditional mail surveys were sent to eligible physicians. Pediatricians and pediatric oncologists developed, pretested, and modified the survey for item clarification. RESULTS: Of 944 eligible pediatric oncologists surveyed, 632 replied, yielding a response rate of 67%. Most respondents reported having access to palliative care programs (65%) and hospice services (85%), but few (27%) had access to inpatient hospice services. More respondents reported feeling comfortable managing end-of-life pain than psychological issues (86% v 67%, respectively). Many pediatric oncologists (62%) reported that half or more of their patients died in the hospital. In multivariate analysis, physicians with access to hospice that accepts patients receiving chemotherapy had more patients die at home than in hospital compared with physicians without access to such services (P = .007). The probability of hospice referral was positively associated with the presence of a hospice facility (P < .001) and with a larger size oncology group (P = .024). Only 2.5% of respondents referred patients at the time of relapse. Continued therapy was cited as the most common reason for not making a referral, and was significantly higher when hospice did not admit children receiving chemotherapy (P = .002). CONCLUSION: Hospice referral for children with cancer is usually made late in the course of their disease and might improve if hospice admits patients who are actively receiving chemotherapy.
Although significant progress has been made during the last 20 years in treating childhood malignancies, some children still die as a result of their disease or complications related to therapy. Childhood cancer is the fourth leading cause of childhood deaths and is the most common nonaccidental cause.1-3 In a recent study by Wolfe et al,4 most children who died as a result of cancer experienced substantial suffering (89%) in the last month of life, principally in the form of fatigue, pain, and dyspnea.4,5 Furthermore, the majority of children die in hospitals, whereas most hospice care is provided in the home.6,7 Hospice care seeks to improve symptom management and address important psychosocial issues for patients with terminal illness and their families.2 While hospice and palliative care practices are becoming established in the adult medical community, a new emphasis has arisen in identifying and overcoming barriers to end-of-life care in children. Previous studies have identified several potential barriers to pediatric hospice care, including hospice inexperience with pediatric patients, reimbursement and regulation problems, communication difficulties, lack of formal provider training in end-of-life care, and family difficulties in making the transition to palliative care.1 Because children constitute a small percentage of overall admissions to hospice, few hospice services maintain expertise in pediatric care.3 Furthermore, pediatric oncology patients may have health care needs such as parenteral nutrition and transfusions that are not reimbursable under some existing systems of hospice insurance. Children's Oncology Group (COG) members were surveyed to determine the comfort level in dealing with end-of-life care, frequency of hospice referrals, perceived barriers to referrals, and potential solutions to these obstacles. This information is vital in determining appropriate interventions that would potentially increase the frequency of hospice referrals and improve the quality of life of children with life-threatening conditions.
Study Population The COG Web site was used to identify pediatric oncologists by using "treating physician" and "hematology-oncology" as search criteria. This Web site is updated daily by COG staff, with regular quality checks (personal communication, January 2005). Eligibility requirements for survey participation were COG membership in 2003 and active clinical care of patients. Oncologists who were primarily administrators, basic researchers, in retirement, or not actively caring for dying patients were ineligible. Physicians were not compensated for participation.
Survey All eligible physicians received an electronic mail message with an introductory letter and a link to an online survey in June 2003 and a reminder electronic mail message was sent to nonresponders 6 weeks later. The survey was mailed with a self-addressed, stamped envelope to nonresponders via traditional post services 6 weeks after the second electronic mail message.
Statistical Analysis
Of 1,200 pediatric oncologists identified by the COG Web site, 256 respondents indicated that they were not physicians or were not actively practicing pediatric oncology, and they were considered not eligible. Of the remaining 944 eligible physicians, 632 replied, for a cumulative response rate of 67% after two electronic mailings and one postal mailing. Nine responding physicians reported that they spent no time in clinical practice and were ineligible. Hence, the study population consisted of the 623 eligible respondents. Of 238 institutions participating in COG, 209 (87%) groups responded. The self-reported characteristics of the respondents are listed in Table 1. More than half were male, spent most (> 70%) of their time in clinical practice, and practiced in a setting with 75 or fewer new diagnoses of cancer per year. The majority (82%) practiced in an academic setting. Respondents represented those who had completed a hematology-oncology fellowship during the last three decades. Most physicians reported access to a local hospice facility (86%) and to a palliative care program (64%), but only 27% reported access to an in-patient hospice facility. The services allowed by local hospice programs for pediatric oncology patients varied, with 45% allowing chemotherapy, 68% allowing transfusions, and 57% allowing total parenteral nutrition.
The majority (75%) of pediatric oncologist surveyed had no formal end-of-life training. More respondents reported feeling comfortable or very comfortable in managing end-of-life pain than with end-of-life psychosocial issues (86% v 67%, respectively). Fewer female than male physicians reported feeling comfortable managing end-of-life pain (odds ratio [OR], 0.6; 95% CI, 0.4 to 1.0; P = .06), although formal training (OR, 2.0; 95% CI, 1.1 to 3.8; P = .03) and increased time in practice (< 10 v > 20 years; OR, 2.8; 95% CI, 1.4 to 5.7; P = .006) were associated with an increased comfort level in multivariable analysis (Table 2). Physicians who had formal training (OR, 2.0; 95% CI, 1.2 to 3.2; P = .005) and increased time in practice (< 10 v > 20 years; OR, 2.8; 95% CI, 1.7 to 4.7; P < .0001) were more likely to report feeling comfortable with end-of-life psychological issues without a statistically significant difference by sex (Table 3).
Most hospice referrals involved the family and pediatric oncologist, and were made late in the disease course, at time of progressive disease (44%), imminent death (20%), or when no additional therapy options were available (26%), compared with 2.5% at the time of relapse. Hospice referrals were predicted by the availability of a hospice facility (OR, 5.6; 95% CI, 2.4 to 13.3; P < .001) and increased numbers of new oncology diagnoses (OR, 1.8; 95% CI, 1.2 to 2.8; P < .02), after adjusting for sex, formal training, years of practice, and academic setting. Reasons cited by respondents for not referring to hospice included continued therapy (57%), access to resources (43%), extended prognosis (38%), and family refusal (24%). Using multivariate analysis adjusting for physician sex, formal training in end-of-life issues, hospice availability, practice in an academic setting, practice size, and years in practice, physicians who cited continued therapy as the reason for not referring patients to hospice had significantly less access to a hospice program that allowed chemotherapy (61% v 39%; P = .002). Only 38% of respondents reported that more terminal cancer patients in the previous year died at home than in the hospital, whereas 53% reported approximately equal numbers died at home and the hospital, and 9% reported more died in the hospital. Having more terminal cancer patients die at home than the hospital was associated with access to hospice program that allowed chemotherapy (OR, 1.8; 95% CI, 1.2 to 2.7; P = .007) and transfusions (OR, 1.7; 95% CI, 1.1 to 2.6; P = .03), but not total parenteral nutrition (OR, 1.2; 95% CI, 0.8 to 1.8; P = .4), while controlling for covariates listed in Table 4. Similarly, when physicians were asked for suggestions to increase hospice referral rates, pediatric oncologists reported that increased social services and more hospice facilities allowing total parenteral nutrition, chemotherapy, and blood product support would help.
Access, timing, and effectiveness of palliative care to enhance quality of life for children with life-threatening and terminal conditions is important.8 This study surveys a large diverse population of pediatric oncologists providing a current picture of pediatric hospice referral practices and points to possible areas of improvement. The American Academy of Pediatrics supports an integrated model of palliative care in which components of the program are introduced at the time of diagnosis whether or not the outcome ends in cure or death.8 This study confirms an earlier finding that many pediatric oncologists (75%) lack formal training in end-of-life care.1 Despite this lack of formal training, many pediatric oncologists feel comfortable dealing with end-of-life issues. More respondents were comfortable managing end-of-life pain (86%) than end-of-life psychosocial issues (67%). This result is not surprising, given that most oncologist manage pain due to stomatitis or other therapy-related complications on a daily basis. Formal training and increased time in practice were significantly associated with increased comfort level, supporting the observation by Hilden et al1 that most oncologists are learning through experience and from mentors. Female physicians in our survey reported being less comfortable in managing end-of-life pain than their male counterparts. We have no valid explanation for this observation, and the variation might be related to a difference of perception of comfort between female and male physicians. This high level of physician comfort in managing end-of- life pain and psychological issues should be interpreted with caution because the result might not reflect how families and patients perceive the issue. Wolfe et al9 found that many parents reported that their child experienced pain in the last month of life and that the therapies offered were often ineffective. Similarly, Anderson et al10 reported a discrepancy between provider perceptions of the quality of death of pediatric patients; physicians were more likely than were nurses to believe that symptom management was successful during the child's terminal phase. Hence, formal training in end-of-life care could enhance physician comfort, effectiveness of symptom management, and communication with other health care providers and families. Contrary to prior studies,1 our survey showed that most pediatric oncologists had access to some form of hospice or palliative care program in the form of local hospice services (85%), palliative care teams (65%), and to lesser extent an inpatient hospice unit (27%). Hospice referrals are associated significantly with availability of hospice services and the number of new oncology diagnoses per year. Programs with larger number of new diagnoses tend to be in larger metropolitan areas that might have greater access to services. In contrast to the ideals of the integrated model of palliative care from the American Academy of Pediatrics, we found that some pediatric oncology patients are referred late in the disease course. Pediatric oncologists most commonly cited continued therapy as the reason for not referring patients to hospice. They also reported having significantly less access to hospices that allow continued chemotherapy. These findings may be due to a variety of factors. A major factor is that the Medicare model that was used to create most hospice benefits5,6,8 was designed for adult cancer patients who are not expected to live more than 6 months. Some hospices might require that patients and families forgo life-prolonging therapies such as palliative or experimental chemotherapy and blood transfusions. Furthermore, more children are being cured of their disease, which may lead some parents and physicians to feel that death can be averted. Parents and providers may perceive a hospice referral as giving up hope and a failure on their part. In addition, parental understanding of a terminal prognosis has been shown to lag behind physician recognition by approximately 3 months.9 This obstacle is also found in studies of terminal adult cancer patients who overestimate their chances for survival and continue to receive aggressive therapy.9 Studies have suggested that if feasible, parents would prefer to care for their dying child at home rather than have their child receive care in the hospital.3,11-13 In addition, it has been reported that parental psychological adjustment is improved when a child dies at home rather than in another location.3,14,15 Allowing a child to have access to hospice care that enables him or her to die at home in familiar surroundings can provide peace to the child and family. It is also true that death at home can be emotionally challenging, physically exhausting, and financially difficult for families.16 Our survey showed that only 38% of respondents reported having more terminal cancer patients die at home than in the hospital in the previous year. Pediatric oncologists who had more patients die at home had more access to hospice services that allowed continuing chemotherapy and transfusions. Hence, having a more flexible hospice service may lead to increased referral to hospice and more children could spend their last days at home. All families should have the option of choosing for their terminally ill children to die at home even if they decide to pursue additional chemotherapy or transfusion support. Earlier introduction of palliative care principles and hospice philosophies may open the door to better physician-patient/family communication and allow for more appropriate treatment goals during the end-of-life phase. This study has some limitations. Nonresponse bias is a potential limitation of all surveys; with an individual response rate of 67% and an institutional response rate of 87%, our response rate compares favorably with physician response rates.17-20 Nonetheless, pediatric oncologists who are not COG members and nonrespondents may have different experiences and thoughts regarding hospice referral. Another potential limitation of self-administered surveys is that self-reported practice patterns may not reflect actual practice. Finally, not all respondents answered every question. This may have been due to the multiple-choice nature of the survey, and respondents may have believed that the questions required more descriptive answers than were possible in this setting. Nonetheless, the results of this survey are consistent and can provide a basis for possible interventions that might improve the care for terminally ill children with cancer. In summary, although hospice and palliative care programs are available to most practicing pediatric oncologists, they are not used as frequently or early enough in the disease process to optimize care for terminal pediatric oncology patients. Referral practices could be improved by formal provider training, improved communication with the patient and family, earlier referral to palliative care teams and hospice services, and improved communication with local hospice groups so that patients may continue to receive cancer-directed therapies, if so desired. The pediatric oncology community has made great strides in curing childhood cancer. We must also focus on optimizing end-of-life care for those patients who cannot be cured.
The authors indicated no potential conflicts of interest.
Presented in part in the 40th Annual Meeting of the American Society of Clinical Oncology, June 5-8, 2004, New Orleans, LA. Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
1. 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 2. Wolfe J, Freibert S, Hilden JM: Caring for children with advanced cancer: Integrating palliative care. Pediatr Clin North Am 49:1043-1062, 2002[CrossRef][Medline] 3. Goodenough B, Drew D, Higgins S, et al: Bereavement outcomes for parents who lose a child to cancer: Are place of death and sex of parent associated with differences in psychological functioning? Psychooncology 13:779-791, 2004[CrossRef][Medline] 4. 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 5. Hurwitz CA, Duncan J, Wolfe J: Caring for the child with cancer at the close of life: "There are those who make it, and I'm hoping I'm one of them". JAMA 292:2141-2147, 2004 6. Himelstein BP, Hilden JM, Boldt AM: Pediatric palliative care. N Engl J Med 350:1752-1762, 2004 7. Feudtner C, Christakis DA, Zimmerman FJ, et al: Characteristics of deaths occurring in children's hospitals: Implications for supportive care services. Pediatrics 109:887-893, 2002 8. American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care: Palliative care for children. Pediatrics 106:351-357, 2000 9. Wolfe J, Klar N, Grier HE, et al: Understanding the prognosis among parents of children who died of cancer. JAMA 284:2469-2475, 2000 10. Anderson EM, Seecharan GA, Toce SS: Provider perceptions of child deaths. Arch Pediatr Adolesc Med 158:430-435, 2004 11. Goldman A: Home care of the dying child. J Palliat Care 12:16-19, 1996[Medline] 12. Hynson JL, Sawyer SM: Paediatric palliative care: Distinctive needs and emerging issues. J Paediatr Child Health 37:323-325, 2001[CrossRef][Medline] 13. Vickers JL, Carlise C: Choices and control: Parental experiences in pediatric terminal home care. J Pediatr Oncol Nurs 17:12-21, 2000 14. Lauer ME, Mulhern RK, Wallskog JM, et al: A comparison study of parental adaptation following a child's death at home or in the hospital. Pediatrics 71:107-112, 1983 15. Mulhern RK, Lauer ME, Hoffman RG: Death of a child at home or in the hospital: Subsequent psychological adjustment of the family. Pediatrics 71:743-747, 1983 16. Friedman DL, Hilden JM, Powaski K: Issues and challenges in palliative care for children with cancer. Curr Oncol Rep 6:431-437, 2004[Medline] 17. Asch D, Jedrziewski MK, Christakis NA, et al: Response rates to mail surveys published in medical journals. J Clin Epidemiol 50:1129-1136, 1997[CrossRef][Medline] 18. Morris CJ, Cantrill JA, Weiss MC, et al: GP survey response rate: A miscellany of influencing factors. Fam Pract 18:454-456, 2001 19. Cummings SM, Savitz LA, Konrad TR: Reported response rates to mailed physician surveys. Health Serv Res 35:1347-1355, 2001[Medline] 20. Kline R, Baorto E: Treatment of febrile neutropenia in the era of vancomycin-resistant microbes. Pediatr Blood Cancer 44:1-8, 2005[CrossRef][Medline] Submitted May 9, 2005; accepted December 12, 2005.
This article has been cited by other articles:
|
|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
|
|||||||||||
|
|||||||||||
|
|
Copyright © 2006 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
|
TOP
ABSTRACT
INTRODUCTION
