Monday, July 28, 2008

More on “futility”

A couple of weeks ago Drew blogged on a short essay/case report in Journal of Clinical Oncology that addressed a physician’s struggle in prescribing chemotherapy that he considered to be futile. The same day I got my latest issue of Oncology with an article (with 2 invited responses, here and here) on patient demands for chemotherapy that clinicians feel is futile. I believe this is the inaugural offering in the new feature, “Areas of confusion in oncology.”

The Oncology article is a fairly wide-ranging piece that begins by addressing what is meant by “futile care.” The authors point out that there is no common or consensus definition [I imagine that at least some of this is one of those “I know it when I see it” phenomena]. A recurring theme in this paper is discordance of perceptions and perspectives between patient and physician. Expert panels struggling over guidelines, a physician facing a desperate or resolute patient, children not willing to contemplate “giving up” on Mom, a patient with a religious belief that “everything” must be done, third-party payers—whether private or government, and John Q. Public (i.e., “society”) in the grip of a compelling drama may have varying and conflicting perspectives.

The authors quote a 1993 article in which the reader is advised to distinguish an effect from a benefit. That dovetails nicely with an observation later in the paper that some patients overestimate prognosis because they confuse response with cure.

Not surprisingly, a major cause of the disparate perceptions is assigned to inadequate communication between patient and physician. And not all the blame falls on the physician. When each is waiting for the other to bring up discussions of goals, values, quality of life, prognosis, end-of-life issues, etc., “misalignment of perceptions” can be expected. The physician may even have thought that s/he provided adequate information on prognosis. But if they provide too wide a range of outcomes, don’t periodically come back to the discussion, or don’t check in with the patient to see what was understood, the discrepant perceptions can grow ever wider. “Lack of patient-provider communication regarding prognosis, goals of therapy, and benefits of aggressive symptom management (hospice) all play a role in the delivery of futile chemotherapy.”

There are several interesting tidbits provided that may be helpful to both experienced clinicians and to students or junior clinicians who are trying to get their heads around the issues related to futility dilemmas.

  • Over 20% of Medicare patients begin a new chemotherapy regimen within 2 weeks of death
  • A recent survey of oncology practices showed a range of 0-34% giving chemotherapy within 2 weeks of death
  • At least one study has shown that some patients with previously treated non-small cell lung cancer would accept chemotherapy with a survival benefit of as little as one week, while others would not take it even for a benefit of two years
  • Another study showed only a 25% concordance between what patients said their decision-control preferences were and the provider’s perception of the preference.
  • Some patients appear to be willing to discuss hospice with a physician other than their oncologist, but not with the oncologist [is it too hard for the patient; does the patient think it will be too hard for or hard on the oncologist?]
  • In one study, physicians initiated a hospice discussion 50% of the time, patients or families one-third of the time
  • One-quarter of physicians will occasionally administer futile chemotherapy to maintain patient hope.
  • The median length of hospice stay is no longer lengthening, but getting shorter (down to 26 days in 2005 vs 29 days in 1995); one-third enroll in the last week of life and 10% on the last day.

An important observation that I have never heard invoked in discussions among clinicians about futility, is that there insufficient information available for patients with advanced disease to access independently. Accurate but vague statements such “current treatments do not cure the cancer” are not helpful for a patient struggling with finding their own process for decision-making. There is very little to be found about the advantages and disadvantages of chemotherapy at this stage, what a patient might reasonably expect, or alternatives such as palliative and hospice care. These points relate to patient questions such as “will I feel better or worse?” (if I take the chemotherapy); “will my cancer shrink [and what does that mean in the short & long term]?;” “how do other people make decisions about these things?”

The authors’ recommendations:

  • Don’t go it alone—use trusted colleagues to share concerns, avoid isolation and burnout
  • Ask the patient how much they want to know, how they want to make decisions
  • Bring up hospice early as a future possibility; emphasize nonabandonment and aggressive symptom management; avoid euphemisms: use “death” and “dying” [while I personally agree with that philosophy, there are cultural overlays and sensitivities than need to be considered.]
  • Use family conference as a way to get the same information simultaneously to multiple people who may be family decision-makers; be prepared to share actual studies to bolster your position that there is little or no benefit to further chemotherapy and that there may be significant burden or harm [is “symptom burden” a useful construct for patients who have been focusing on tumor shrinkage? I think it is.]

Equally valuable as the main article, the reviews provide valuable nuance and perspective. One practical idea is the "differential diagnosis" of a patient request that the oncologist thinks is not in the patient's best interest. What underlies the request--unrealistic expectations? Fear of abandonment? Present hospice as a treatment [reminiscent of Andy Billings' statement that family meeting is one of palliative care's most important procedures]. "A 20-60 minute conversation between an oncologist and a patient . . . is miniscule when weighed against a lifetime of family values, traditions, culturally held beliefs, and deeply entrenched religious beliefs."

Khatcheressian J, Harrington SB, Lyckholm LJ, Smith TJ. 'Futile Care:' What to Do When Your Patient Insists on Chemotherapy That Likely Won’t Help. Oncology 2008;22(8):881-887 (free full text)

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