Use of Aggressive Medical Treatments Near the End of Life: Differences between Patients with and without Dementia

In many areas of health care large disparities exist in terms of who does and does not receive certain procedures or types of treatment. Disparities have been shown to exist along the lines of age (Stone et al. 1996; Levinsky et al. 2001; Mitchell et al. 2003), race or ethnicity (Gornick et al. 1996; Stone et al. 1996; Mitchell et al. 2003; Skinner et al. 2003), income (Gornick et al. 1996), gender (Stone et al. 1996; Mitchell et al. 2003; Skinner et al. 2003), geographic location (Mitchell et al. 2003; Skinner et al. 2003), and presence or absence of mental illnesses (Druss et al. 2000; Cradock-O'Leary et al. 2002). Health care delivered within the final weeks or months of life is not only increasingly controversial (Sloan and Taylor 1999; Weiss 1999; Rocker and Curtis 2003), but also exceedingly costly (Levinsky et al. 2001). It is not surprising, therefore, that research on the aggressiveness and cost of care at the end of life has found disparities along the same dimensions (Ahronheim et al. 1996; Hopp and Duffy 2000; Rose et al. 2000; Levinsky et al. 2001; Shugarman et al. 2004; Wennberg et al. 2004). Persons with dementia may present certain clinical and ethical dilemmas when it comes to end-of-life care. Dementia disorders are typically degenerative, and although an estimated 13 percent of cases may be at least potentially reversible (Clarfield 1988), few of these cases actually respond to therapy (Freter et al. 1998). Optimally, treatment at the end of life is guided by patient preferences (AGS Ethics Committee 1995), and the quality of end-of-life care is often assessed in large part according to the extent to which providers adhere to those preferences (Wenger and Rosenfeld 2001; Clarke et al. 2003). While persons with mild dementia may be able to take part in end-of-life decision making, those with more severe impairments often lack decision-making capacity (Hirschman et al. 2004). For these severely demented patients, clinicians may need to rely on a combination of advance directives, which are often not available or not specific enough to be directly applied to a given situation (Teno et al. 1997; Goodman, Tarnoff, and Slotman 1998), or professional or surrogate judgment that may fail to accurately represent the wishes of the patient (Coppola et al. 2001; Fried, Bradley, and Towle 2003). There is concern that these decisions may lead to more aggressive treatment than the patient would have chosen, as physicians, families, and courts err on the side of prolonging life (Francis 2001). There has been a realignment of professional and lay opinion on the use of feeding tubes and other nonpalliative options for patients with advanced dementia, with such burdensome procedures generally being considered less appropriate (Prendergast and Luce 1997; Gjerdingen et al. 1999; Gillick 2000). However, current financial incentives, health policies, and organizational factors tend to discourage the use of palliative care or hospice (Buntin and Huskamp 2002), and it is unclear whether actual practice has evolved toward providing more palliative care for patients with advanced dementia. In a recent study comparing end-of-life nursing home care between patients with advanced dementia and patients with terminal cancer, patients with dementia were substantially less likely to have advance directives limiting care and more likely to receive burdensome interventions, such as tube feeding, laboratory tests, and restraints (Mitchell, Kiely, and Hamel 2004). In a study of hip fracture and pneumonia patients, patients with end-stage dementia received as many painful or uncomfortable procedures as cognitively intact patients, despite having 6-month mortality rates of 55 percent, compared with 12 percent for cognitively intact patients (Morrison and Siu 2000). The authors of both studies suggest that more emphasis should be placed on conservative care for demented patients with poor prognoses. At the same time there is also concern that patients with dementia may experience a number of barriers to adequate treatment. For example, persons with dementia are often unable to advocate for their own care (Advisory Panel on Alzheimer's Disease 1996), financial incentives may favor reduction in care (Advisory Panel on Alzheimer's Disease 1996), many medical professionals lack the skills to properly treat patients with dementia (Advisory Panel on Alzheimer's Disease 1996; Stone 2001), current policy regarding long-term care assumes the existence of capable family caregivers who may not in fact be available (Montgomery and Williams 2001), and there may be stigma associated with dementia (Jolley and Benbow 2000). However, there has been scant research indicating that patients with dementia are actually at greater risk of underuse of appropriate services. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) reported that compared with patients without dementia, patients with dementia were more likely to have chart documentation of a decision to withhold dialysis, but there were no significant differences in decisions to withhold ventilator use or surgery after controlling for other factors (Hamel et al. 1999). We are unaware of any large nationwide studies investigating whether patients with dementia are actually treated more or less aggressively near the end of life, and our study aims to fill this gap. Using data from Veterans Affairs (VA) and Medicare, we analyzed whether acute care patients with dementia were more or less likely to receive any of five aggressive medical services.