Wednesday, March 11, 2009

Supportive vs palliative care: What's in a name?

A new study just published online in Cancer by the MD Anderson palliative care group asked this question of medical oncologists, nurse practitioners, and physician assistants at their institution in an anonymous web-based survey. Interestingly, there was a 70% response rate to the questionnaire among the 200 practitioners to whom it was sent.

The impetus for this study was apparently an observation that palliative care service referrals continue to be made late in the illness trajectory, despite efforts to encourage clinicians to use PC services earlier. The authors cite 2 studies, one in Japan (patients, families, physicians, and nurses) and one among US pediatricians and parents. These studies found that the name "palliative care" had a negative image and was a barrier to referrals (Japan) and evoked negative emotions and was less favored than "supportive care" (US). The authors decided to conduct a similar study in a large US cancer center with a well-established Palliative Care Service.

The study was web-based. The subjects were randomly selected medical oncologists and mid-level providers (NP's & PA's); 100 of each group were invited by e-mail to participate. The questionnaire was short & straightforward, first asking clinicians if they were more inclined to refer patients for symptom control to a service named Palliative Care vs Supportive Care when patients were in the following groups: newly diagnosed with cancer; undergoing primary treatment for cancer; in remission; receiving active treatment for advanced cancer; advanced cancer no longer receiving active treatment or in transition to end of life. A service named "Supportive Care" was the clear choice of preferred name in all patient categories except the last, which was close to a tie.

When asked what term they preferred using when discussing the referral with patients and families, only 19% preferred 'palliative.'

When asked about perceptions associated with each name, 'palliative care' was considered a barrier to referral; well over 50% said that 'palliative care' is synonymous with hospice; a large percent felt that the term 'palliative' decreases hope in patients and families. 'Supportive care,' on the other hand, was significantly associated with treatment for chemotherapy side effects.

14% of participants reported that using 'palliative care' actually caused them distress, compared to 6% for 'supportive care.'

Despite these findings, participants reported that palliative care services are useful and there was a general willingness to refer, increasing as disease progressed and the patient approached the end of life.

The majority of respondents have a different perception of the role of palliative care and where it fits in various parts of the disease trajectory than do most palliative care clinicians, who see a valuable and appropriate complementary role much earlier in the disease. Will concerted efforts to educate clinicians on the definition, benefits, and strategic place of palliative care make a difference in both perceptions and timing of referrals? The authors cite studies suggesting that this might be the case. There has been dramatic growth in the availability of palliative care in the past decade, but that simple visibility & availability is probably insufficient to change perception & practice. Outreach, education, and daily practice will all be needed to expand the prevailing view.

It occurs to me that I have seen many studies on the symptom burden of hospice patients and those with advanced disease. It's pretty easy to say that a specialized service might be the most appropriate element in the cancer care structure to address these needs. We also have studies on individual symptoms associated with primary therapy or the disease process, often in the context of intervention studies. But I don't believe that I have seen a study that clearly demonstrates the need for palliative care due to symptom burden in earlier stage disease. "Everyone knows" that patients have symptoms, psycho-emotional distress around diagnosis or decision-making and the like at earlier disease stages, but we probably haven't made the case, backed by data, that a specialty service could/would/should be involved in these earlier phases of the disease.

ResearchBlogging.orgFadul, N., Elsayem, A., Palmer, J., Del Fabbro, E., Swint, K., Li, Z., Poulter, V., & Bruera, E. (2009). Supportive versus palliative care: What's in a name? Cancer DOI: 10.1002/cncr.24206

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