Tuesday, March 9, 2010

Symptoms, Suffering, Parents and Pediatric Palliative Care in End-Stage Cancer, Part 1

Dying children present some of the most distressing scenarios for families and clinicians alike. In pediatric patients with advanced cancer there are a variety of forces and goals in-play. Two recently published studies look at the palliative care of children with end-stage cancer and the perceptions and concerns of their parents. Both studies 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.
The one that I will cover first is currently pretty hot in the media. The second is an Australian study that I will cover in another post.

"Considerations About Hastening Death Among Parents of Children Who Die of Cancer" was published as this month’s Journal Club article in Archives of Pediatrics and Adolescent Medicine. The abstract is here, with links to full text html, pdf and free PPT teaching slides. There is a link to video of Dr. Wolfe discussing the study on the Dana Farber Institute Press Release webpage.
This study interviews 141 subjects, with concomitant medical record review.
Data presented included:
Reported Experience with Hastening Death (HD)
The 4 Questions:
"During your child's end-of-life care period, did you or a family member ever consider asking someone on the care team to give him/her or give you or the family member medications to intentionally end his/her life?”
"When your child was receiving end-of-life care, did you or a family member ever discuss intentionally ending his/her life?"
"Did you or a family member ask someone on your child's care team to give him/her medications or to give you or the family member medications to intentionally end his/her life?"
"Did a member of your child's care team give your child medications or did you or a family member give him/her medications to intentionally end his/her life?"

19 (13%, about 1 in every 8) said they had thought about asking a doctor to hasten their child's death
13 (9%, almost 1 in every 10) actually discussed it with caregivers
5 (4%) explicitly asked a clinician for medications to end the child’s life
3 (2%) reported that their child’s life was intentionally ended with medication. In all three cases the medication used was morphine.
Current Views About HD:
Retrospective Hypothetical Scenarios
36% (49 of 136, about 1 in every 3) in retrospect, would have considered discussing HD under certain circumstances with a breakdown of scenarios given.
Uncontrollable pain was the most common circumstance to elicit a hypothetical consideration of HD. 15% would have considered HD for non-physical suffering.
Only 2 parents would have considered HD in circumstances not directly related to the child’s experience, (family witnessing suffering or medical costs).
Endorsement of HD in Vignettes
94% endorsed proportionately intensive symptom management for a terminally ill child with uncontrolled excruciating pain, while only 54% did so in the case of coma; these results did not change when adjusting for race and religiousness.
50% (1 in every 2) endorsed HD in at least one vignette. 59% would agree with a physician discussing HD in the case of a child with terminal cancer in pain or coma.
Of the 19 who considered HD during their child’s EOL course 16 (84%) endorsed HD in vignettes.
In general, being white (not Hispanic) and being not very religious were associated with endorsing HD in vignettes.
In the discussion it was noted that these data are similar to those encountered among the U.S. public with regard to HD and adults at EOL. Existing expert recommendations that it is best for clinicians to have self-awareness of their own attitudes toward HD, and then to hold open, non-judgmental discussions with family members are reiterated. The data suggest that if physical suffering is identified, most parents are open to having discussions about options including legal and effective alternatives, e.g., proportionately intensive symptom management and palliative sedation (both of which imply consideration of the principle of double effect). It was noted that given the sensitive nature of the topic and social desirability bias that HD discussions may have been underreported.
Time magazine covers the article here.
Some thoughts

I think this study highlights the systemic and intrinsic problems in caring for pediatric cancer patients, those of late-treatment and under-treatment of distressing symptoms especially at EOL. In the absence of information on palliative care options, parents are likely to consider HD as a desperate exit plan. It is likely that more than 13% of parents actually consider HD at one point or another. Having a discussion, earlier rather than later, about planning for contingencies of extraordinary symptom presentations, including those that might include significant suffering, is likely to impart important and reassuring information, as well as proactively relieve this likely-to-emerge existential distress for caregivers.
I will continue in this vein in the next post in this two-part series.

On a related note, Dr. Robert Macauley, Pediatrician on the Pediatric Advanced Care Team at Vermont Children's Hospital at Fletcher Allen Health Care wrote an Op-Ed piece in the Burlington, VT Free Press, My Turn: Open palliative care to children.

Dussel V, Joffe S, Hilden JM, Watterson-Schaeffer J, Weeks JC, & Wolfe J (2010). Considerations about hastening death among parents of children who die of cancer. Archives of pediatrics & adolescent medicine, 164 (3), 231-7 PMID: 20194255

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