Thursday, December 13, 2007

Prognostic disclosure & hope; ACP & death

Blogging on Peer-Reviewed ResearchTwo from the latest JCO.

Journal of Clinical Oncology has a fascinating study on prognostic disclosure and hope. The context of this study is best summarized by its opening paragraph:

"Physicians and patients alike believe that the best medical communication allows for hope, no matter how difficult the situation. But this ideal presents challenges for physicians, who may view disclosure of a poor prognosis and provision of hope as conflicting obligations. In service of hope, some physicians therefore choose to limit or carefully tailor the information they give to patients. For example, physicians may give no prognostic information and avoid such a discussion when asked directly, may give overly optimistic information, or may collude in hopes of a cure by focusing on treatment options."

The study involved ~200 parents (mostly female, college-educated, and overwhelmingly white) of children with cancer at Dana Farber; the median age of the patients was 6.6 years, and the survey was done a median of 100 days after diagnosis. Most patients had good chances of survival (the physicians rated 75% of the patients as having a more than 50% chance of survival) - although thankfully the authors did some analyses of just those parents with children with low chances of survival. They asked the parents a variety of questions about how much prognostic information they received (they used a point system for different elements of a prognostic disclosure - including any discussion of prognosis, who brought it up, if likelihood of cure was shared, if quantitative data was shared, if written info was shared, if the parents thought they received enough info or not, etc.); the major outcome they were trying to measure was the impact of the completeness/thoroughness of the prognostic discussion on parents' reports of hopefulness (how hopeful the physicians' communication made them feel).

The major finding: most parents reported feeling happy with the amount of info about prognosis they received, and the extent of prognostic disclosure was strongly correlated with hopefulness.

The secondary findings, which are of more interest to me and probably most readers of this blog: having a poor prognosis (likelihood of cure less than 25%) was associated with lower reported communication related hopefulness. However, for the parents of those children, degree/thoroughness of the prognostic disclosure was strongly associated with communication related hope. So the not surprising finding that the parents with the least to hope for found their communication to be less hope inspiring is tempered by the evidence that talking about prognosis more thoroughly/deeply built hope. I regret writing that convoluted sentence, but don't have the wherewithal right now to fix it.

The major limitations to the secondary findings is that it involved a small number of parents (11%), which makes you wonder how reproducible they are. The major limitation to the study in general is that it involves parental recall about the content of past conversations, and one can imagine the recall being heavily shaded by the parents relationship with the oncologist, etc. Docs who are 'good communicators' may be remembered as being more thorough and more hope-inspiring - i.e. what's being measured here is parents' general perceptions the oncologists' warmth, trustworthiness, etc. The ideal way of doing this of course would be to prospectively record physician-patient(parent) interactions and then measure hope, etc. That'd be a bugger of research project, for obvious reasons, and may never happen....

Research issues aside, any study which supports the concept that telling patients the thorough truth is welcome.

As a side note about the language used in this study, patients who had a 25-49% chance of survival were classified as being 'somewhat likely' to survive, although it seems that 'somewhat unlikely' is more accurate. The language of hope is everywhere....

Mack, J.W., Wolfe, J., Cook, E.F., Grier, H.E., Cleary, P.D., Weeks, J.C. (2007). Hope and Prognostic Disclosure. Journal of Clinical Oncology, 25(35), 5636-5642. DOI: 10.1200/JCO.2007.12.6110

[Why the full reference & DOI? This is part of the BPR3 project that we are joining - which won't change the blog in any way other than a few icons & extra links like above. The full-reference is part of the BPR3 standards, as well contains code which will eventually allow the post to be aggregated and searched as part of a BPR3 database.]

The same issue also has a study on advance directives and outcomes of bone marrow transplantation. The context of this study, per the introduction:

"Clinicians often have difficulty communicating with their patients about ACP, because it explicitly raises the possibility of death. They may fear that ACP discussions could heighten the patient's anxiety or, worse, could have an adverse effect on the outcome. In the setting of HSCT, discussions about ACP may be especially upsetting to patients, because they are about to undergo a procedure with very high risks of morbidity and mortality. Patients may fear that physicians bring up ACP because they expect the patient will not survive. This belief stems from findings among hemodialysis patients who viewed ACP as a way to prepare for death and dying and not just as a preparation for possibly being incapacitated in the future. Hence, we conducted this retrospective analysis to determine whether patients engage in ACP in the HSCT setting and to evaluate whether the presence of advance directives was associated with adverse clinical outcomes."

I appreciate that the authors freely admitted this was being driven by clinician fear (again, per the first article, of hurting patients by talking with them honestly). The results were, simply, that having done advance care planning was associated with improved survival in both uni- & multivariate analyses. The magnitude of increased risk of death associated with not having done ACP was greater than that associated with advanced age (patients in the highest age tertile).

So, yes, talking with your patients about the future doesn't kill them. Glib quips aside, 'ACP' in this study was defined as having either a living will, a health care power of attorney, or 'life support instruction,' 3 things which don't necessitate a conversation with a physician about one's future, but I'll still stick with the above speaking points!

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