___________________________________________ Palliative Care and Pain Management at the End of Life
the time” or “always” [89]. Predicting survival for people with the third type of trajectory (prolonged decline) is extremely difficult because of the wide variation in progressive decline. The prognosis for dementia can range from 2 to 15 years, and the end-stage may last for 2 years or more [103; 104]. To help facilitate more timely referrals to hospice, the NHPCO established guidelines for determining the need for hospice care, and these guidelines were adopted by the Health Care Finance Administration to determine eligibility for Medicare hospice benefits [76]. Other prognostic models have been devel- oped, such as the SUPPORT model, the Palliative Prognostic (PaP) Score, and the Palliative Prognostic Index (PPI) [12; 105; 106; 107]. Most were developed for use in the cancer setting and for hospitalized patients, and their value beyond those settings has not been validated [81; 95]. In addition, the PaP and the PIP will identify most patients who are likely to die within weeks but are much less reliable for patients who have 6 to 12 months to live [95]. A systematic review showed that the NHPCO guidelines, as well as other generic and disease- specific prognostic models, were not adequately specific or sensitive to estimate survival of at least six months for older individuals with nonmalignant life-limiting disease, especially heart failure, COPD, and end-stage liver disease [99]. Most prognostic tools for organ-failure diseases are used to estimate the risk of dying and to select patients for treatment, not to determine when end-of-life care should be initiated. Several models have been established to determine prognosis for heart failure; the one used most often is the Seattle Heart Failure model, which represents the most comprehensive set of prognostic indicators to provide survival data for one, two, and five years [108; 109]. Newer evidence-based recommen- dations for estimating survival in advanced cancer have been published, as has a nomogram; however, use of the nomogram for hospice referral is limited, as it estimates survival at 15, 30, and 60 days [81; 110]. For estimating prognosis in advanced dementia—a condition with the most challenging disease trajectory—the Advanced Dementia Prognostic Tool (ADEPT) has been shown to be bet- ter than the NHPCO guidelines in identifying nursing home residents with advanced dementia at high risk of dying in six months [111]. However, the ability of ADEPT to identify these patients is modest [111]. Lastly, the Patient-Reported Outcome Mortality Prediction Tool (PROMPT) was developed to esti- mate six-month mortality for community-dwelling individuals 65 years or older with self-reported declining health over the past year; the model shows promise for making appropriate hospice referrals, but the model needs validation [112]. In addition to the low reliability of these models, another problem is that the clinician’s prediction of survival remains integral, as it is one element in prognostic models, sometimes representing as much as half of a final score [110]. Other variables include performance status, laboratory data, and quality of life scales.
TYPICAL DISEASE TRAJECTORIES AND SERVICE NEEDS OVER TIME FOR ELDERLY PATIENTS
SHORT PERIOD OF EVIDENT DECLINE
High
Mostly cancer
Death
Low
Time
LONG-TERM LIMITATIONS WITH INTERMITTENT SERIOUS EPISODES
High
Mostly heart and lung failure
Death
Low
Time
PROLONGED DWINDLING
High
Mostly frailty and dementia
Death
Low
Time
How difficult it is to determine a prognosis depends on the disease trajectory. Determining a prognosis in the cancer set- ting was once clear-cut because of the short period of evident decline, but advances in cancer therapies have made it more difficult to estimate a prognosis. Studies have shown rates of accurate prognosis of 20%, with survival usually overestimated, up to a factor of five [93; 96]. The unpredictable course of organ-failure diseases, with its long-term limitations and acute exacerbations has always made prognostication difficult [62; 89; 101; 102]. In a survey of cardiologists, geriatricians, and internists/family practitioners, approximately 16% of respon- dents said they could predict death from heart failure “most of Source: [9] Reprinted, with permission from Lynn J, Adamson DM. Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age. Santa Monica, CA: Rand; 2003. Figure 5
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MDCA1525
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