Saturday, April 1, 2006

Patients' preferences for life-prolonging care as a barrier to hospice enrollment

Well I read the article I mentioned March 29 regarding patients' preferences for life-prolonging care as a barrier to hospice enrollment. It uses data taken from a study of ~200 community dwelling patients (with an equal mix of cancer, CHF, and COPD diagnoses--all had ADL limitations and 'limited' life expectancies) whose clinical courses and treatment preferences were followed for up to ~2 years. The subjects were serially asked treatment preference questions based on scenarios involving "minor" & "major" treatments with different outcome scenarios, as well as questions gauging fear that life will be prolonged by machines. There were over 800 assessments total of these 200 subjects.

A lot of data were generated. On the dismal side, only 25% had been informed that they were likely to die from their life-limiting illness & only 9% had knowledge that hospice care was an option. Not surprisingly a desire to limit "low-burden" treatments was associated with subsequent hospice enrollment (although this represented only 3 of 16 patient-assessments in which this desire was expressed). ("Low-burden" here means a brief hospitalization with IV treatments, etc.). A desire to limit "high-burden" treatments was also associated with hospice enrollment, although again the numbers were very small (5/28). This gives a general sense that 1) the subjects generally had "hospice-inappropriate" treatment preferences, and 2) even for those patients who expressed 'hospice-appropriate' treatment preferences, hospice referral rates were very low. Also, for the non-cancer patients, a fear of being 'kept alive on machines' was associated with hospice referral. This further gives a sense of a group of people for whom hospice enrollment was seen as a way to avoid feared interventions, as opposed to a "positive" choice of the best way to be cared for while facing a life-limiting disease.

The rates of hospice referral in the study were so low that it's really difficult to interpret all of this. Indeed, given that 9% had knowledge of hospice care as an option, and 75% didn't know they had a life-limiting illness, is it any surprise that the rates were so low? One wonders if--after those 16 assessments in which patients stated they didn't even want 'low-burden' treatments--patients were educated about hospice/treatment choices, referrals would have been different.

That being said, Casarett & Co. conclude with discussing how the hospice model works very poorly for many people with advanced chronic diseases such as CHF & COPD, who need a lot of care & support & help with decision-making, but for whom a few days in the hospital with IV antibiotics or furosemide can be entirely medically reasonable and (as this study suggests) consistent with many patients' treatment preferences. This is clearly a major problem with the current infrastructure for caring for people with chronic, life-limiting illnesses, and I'll refer people to Joanne Lynn's work for more about this (here & here).

P.S . Not surprisingly I have not heard back from blogspot regarding the spam-post...I'll probably leave it up another week then can it so Pallimed can be blemish-free. I really hope this doesn't happen again. That being said, I do have some really cheap inkjet cartridges if anyone's looking....

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