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Tuesday, December 8, 2009

Attitudes of Adolescent Cancer Survivors Toward End-of-Life Decisions for Minors

Tulip flowers at the Keukenhof garden - Lisse,...Image via Wikipedia
I remember a discussion with a teenager with cancer and his family regarding treatment options and prognosis.  He was open to discussing these matters and even initiated a lot of the discussion and questions himself.  At one point I told him that I wouldn't give him a "B.S. answer".  He replied, "You can really say 'bullshit.'  You don't have to abbreviate that word.  We know what it means.  Just say it."

Given the increase in adult medicine staff seeing pediatric patients in palliative care, it is nice to open my wife's Pediatrics journal and see many different articles pertaining to palliative care.  I remember a year or two ago, there did not seem to be that many.  Regardless of the increasing number of relevant articles in the journal, they still do not have a palliative care heading in the 'Topic Collections' section (Ahem, AAP!).

There are a few articles in this month's journal, but I would like to highlight one that focuses on just the situation I faced above.  An end of life research group from The Netherlands and Belgium interviewed 83 adolescents (11-18yo) using a previously used survey on almost 2000 teens without chronic illness (school survey).  A few new abbreviations were introduced which I will use here for consistency with the original research article:

ELD = end of life decision
NTD = non-treatment decision (withholding/withdrawing medical treatments)
APS = alleviation of pain and symptoms

NTD and APS are types of ELDs.  Got it?  Ok, let's move on.

In addition to NTD and APS they also asked opinions about intentionally hastened death via either euthanasia (administered by medical staff) or physician-assisted suicide (administered by self).  As many of you are familiar with euthanasia and physician assisted suicide is permitted by law in Belgium and The Netherlands, but if you are under 18 you can not choose either of those options.  Although if you are under 18 and judged to be competent (by whom? it varies) you can make NTD and APS decisions.

The adolescent teenage survivors had over 80% acceptance/positive in regards to acceptability of NTS and APS decisions in a hypothetical terminal cancer patient scenario.  This was statistically significant compared to the school sample who had agreement rates in the 60% range.  The interesting thing is the school sample had nearly similar agreement rates for NTD, APS and euthanasia possibly indicating the confusion about these very different approaches which exists in adults and in the US.

I think a very profound and helpful finding is that 96% of the cancer survivors agreed that a child with terminal cancer has the right to know that s/he will die soon.  Obviously for parents and medical staff this could be a very difficult thing to consider sharing with a dying child, but the possibility for wanting to be informed is quite high it therefore behooves us to at least inquire to the patient's wishes.  They may not want to know right then, but at some point prognostic discussion helps inform what treatment decisions they may wish to pursue.

ResearchBlogging.orgPousset, G., Bilsen, J., De Wilde, J., Benoit, Y., Verlooy, J., Bomans, A., Deliens, L., & Mortier, F. (2009). Attitudes of Adolescent Cancer Survivors Toward End-of-Life Decisions for Minors PEDIATRICS, 124 (6) DOI: 10.1542/peds.2009-0621

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