Wednesday, March 24, 2010
A couple of weeks ago I posted on the Archives of Pediatrics and Adolescent Medicine article “Considerations About Hastening Death Among Parents of Children Who Die of Cancer." That study and the study I’m writing about here are retrospective cross-sectional surveys of parents whose children died of cancer at least one year previously. Joanne Wolfe, MD, MPH of the Dana Farber Cancer Institute, Boston was on both research teams.
This study, "Symptoms and suffering at the end of life in children with cancer: an Australian perspective" was published in the Medical Journal of Australia in mid-January. The abstract is here.
In the study’s introduction, it was pointed out that previous international studies may not apply to the Australian milieu since compared to many other developed countries there are system limitations in access to experimental cancer treatments and fewer pediatric oncologists available, also Australia's population is dispersed over huge physical distances, which leads to the development of local and regional treatment centers.
Here are some data highlights:
- Offered out-of-hospital palliative care: 82%, 75% opted in. Satisfaction rating of very good or excellent for out-of-hospital palliative care: 74%
- 47% received cancer-directed therapy in the last month of life, with 33% experiencing significant side effects. The perceived goal of cancer-directed therapy was 33% palliation, 12% extending life, 12% ensuring everything had been done. Children who received cancer-directed therapy during the end-of-life period suffered from a greater number of symptoms than those who did not receive treatment (p = 0.03).
- 63% had time to plan death location, of these 89% preferred to have the child die at home, and of these all except two died in the planned location; 61% died at home. Of those children who died in-hospital, almost 25% died in an ICU. Life-sustaining treatments were pursued in only 8%.
- Descriptive statistics were presented about symptoms, suffering, treatment and treatment success. It was notable that there was a significant gap between symptom treatment and treatment success. Despite this, 83% reported the death of their child was somewhat or very peaceful.
In conclusion, the authors noted “relatively high rates of death at home and low rates of heroic medical interventions suggest a realistic approach to care of children with cancer at end of life. However, many Australian children who die of cancer suffer from unresolved symptoms. Greater care should be paid to palliative care for these children.”
"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." ~ Elizabeth Stone
I think that taken together these two studies highlight the problems of under-treatment and late-treatment of symptoms in children with end-stage cancer, as well as importance of appropriate, anticipatory information for and communication with parents and caregivers. What caught my eye about these studies is that they were conducted and published at all, and upon further consideration, that they made it through the IRB process (having sat on one). I think that illness, suffering and death of children are psychologically white-hot. They touch upon our hopes, fears, guilt and shame, as health care professionals, and even more personally as family members ourselves, and as human beings.
I for one experienced the post-natal death of a sibling when I was seven-year-old; I rotated in the PICU, and routinely worked in a busy, urban children’s hospital emergency department; my young-adult son is training in the Army National Guard at this writing. The death of children, its memory, and the threat of death can loom very large indeed.
One appealing fantasy that may be afoot, which I know I can entertain, is that if we were just having EOL discussions earlier, and better prognoses where being made, and change of goals were initiated sooner, and these hospice -appropriate patients were enrolled in hospice earlier, then these kids and their families would suffer less. Certainly not very parsimonious, these are a lot of complex conditions. Even if we were able to smooth this terrible path some, and see greater and earlier enrollments into hospice, there is still the dying, the dying child and the child dying from cancer.
The expectation that we would be able to attain ideal symptom control if we were just given a fair shot, in a process as chaotic, dynamic and malignant as end-stage, pediatric cancer, is I think a fantasy. Alternatively there is doing one’s best by a patient, attending to the symptoms and the suffering in a context that is congruent and meaningful that is perhaps healing and even protective, especially for surviving parents, siblings, and other caregivers.
The Australian situation is different from other parts of the developed world as noted above. Perhaps an analogy might be drawn to the health care situation in rural and remote portions of the United States, where there are logistical barriers and cultural differences, and so the experience, meaning and memory may be different. That being said, even in the face of a yawning gap between symptom treatment and symptom treatment success, these parents were largely satisfied with the palliative care they received, and recalled the death of their child as being somewhat or very peaceful.
I think that there is a strong place for information, appropriate expectations, empowerment, good will, attention, professionalism and narrative to make a crucial difference in the experience of suffering, dying and grief, even, or especially in the case of children. That imperfect work is ours.Heath JA, Clarke NE, Donath SM, McCarthy M, Anderson VA, & Wolfe J (2010). Symptoms and suffering at the end of life in children with cancer: an Australian perspective. The Medical journal of Australia, 192 (2), 71-5 PMID: 20078405