International Association for Hospice & Palliative Care

International Association for Hospice & Palliative Care

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Promoting Hospice & Palliative Care Worldwide


2006; Volume 7, No 4, April



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Getting the word out

Message from the Chair & Executive Director:
Kathleen M. Foley, MD
Liliana De Lima, MHA

Article of the Month:
Dr. Ripamonti

Memorial Service for:
Dame Cicely

Book Reviews:
Roger Woodruff, MD

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Article of the Month

Carla Ripamonti, MD

Hospice Referral Practices for Children with Cancer:

A survey of Pediatric Oncologists

Author(s): Fowler K, Poehling K, Billheimer D, Hamilton R, Wu H, Mulder J, Frangoul H *

Journal:  Journal of Clinical Oncology 24: 1099-1104; 2006

The authors carried out a survey among 1,200 pediatric oncologists of the Children’s Oncology Group (COG) in 2003 who were active in the clinical care of patients. The purpose of the survey was to determine the comfort level in dealing with end-of-life care of children with cancer, the frequency of hospice referrals, the perceived barriers to referrals, and the potential solutions to these obstacles.

The oncologists were given a questionnaire with 19 multiple-choice items that addressed areas such as: demographic and practice characteristics; education and training in end-of-life care; comfort level in addressing end-of-life pain and psychological stress; availability of hospice services; perceived barriers to referral to hospice care; decision making in referral to hospice care and factors that would increase referral to hospice.

Of the 944 active members of the COG, 632 replied (a 67% response rate) and 623 were considered eligible. 60% of these were male, 39% had 10 to 19 years and 34% had less than 10 years since completing their oncology training; 52% of them spent 70% ≥ time in clinical practice.

24% of the oncologist surveyed had 75 to 149 new diagnoses per year at their centers and 21% had ≥ 150 new diagnosis/year.

Regarding available services 85% had hospice service, 65% had a palliative care program and few (27%) had access to in-patient hospice services. The services permitted by local hospice programs for pediatric oncology patients varied, with 45% allowing chemotherapy, 68% allowing transfusions, and 57% allowing total parenteral nutrition.

The study of factors associated with physicians’ comfort in treating end-of-life pain and psychosocial issues showed that 74% had no formal end-of-life training and most of the physicians were more comfortable, or very comfortable, managing physical pain rather than psychosocial issues (86% vs 67% respectively).

Physicians who had formal training (p<.05) and increased time in practice < 10 vs > 20 years (p <. 0001) were more comfortable with end-of-life psychological issues.

Referrals to hospice were made at the time of disease progression (44%) or imminent death (20%) or when no further oncologic therapy was available (26%) and only a few patients (2.5%) were referred at the time of relapse.

The possibility to enter a hospice was associated with having access to a hospice program (p<.001) or having a high number of terminal patients (p=0.024).

The reasons given for non-referral to hospice by the physicians surveyed were:

  • the continuation of oncologic therapy (57%) and this was significantly higher when hospice did not admit children receiving chemotherapy (p= .002).
  • lack of access to resources (43%),
  • extended prognosis (38%) and
  • family denial (24%).

In the previous year, 38% of terminal patients died at home and not in hospital and 9% of patients died in hospital; whereas 53% reported an equal number of deaths both at home and in hospital.

Why I Chose this article

Palliative care and hospice programs for adults are often referred to, whereas it is hardly mentioned for the pediatric population. This survey shows that children have access to hospice when they are terminally ill and when there is no further possibility for an active oncologic therapy. It also reveals that a very small percentage of centers have access to an inpatient hospice.

* From the Department of Hematology Oncology, University of Alabama; Departments of Hematology Oncology, Pediatrics, and Biostatistics, Vanderbilt University Medical Center ; and Alive Hospice, Nashville, TN


Carla Ripamonti, MD
Member of the Board of Directors, IAHPC

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