Illness Trajectories: Description and Clinical Use #326

General Evidence

A large observational study described distinct illness trajectories at the end of life for frailty/dementia, cancer, and organ failure. ¹ Subsequent research has cast some controversy about the validity of these findings, particularly whether hospitalizations may have a more significant role on the pattern of decline than the specific illness itself.^2–4

Illness Trajectories

Frailty/dementia: A pattern of dwindling cognitive and/or physical disability that may progress over several years. ¹ Seventy percent of dementia patients require assistance in ≥3 activities of daily living (ADLs), in the last year of life, making these patients at heightened risk for nursing home placement and caregiver breakdown. ² Many clinicians and families may not recognize that dementia by itself is a terminal illness.

Cancer: A relatively stable period of physical function followed by an acute decline in the last few months of life. Multiple studies have supported this trajectory; however, the timing of steep decline ranges between 1 and 5 months before death depending on the study.^1,5–7 Cancer patients may also experience more predictable patterns of spiritual distress with peaks at diagnosis, disease recurrence, and the terminal phase of illness. ⁸ Because the physical decline and psychospiritual distress can be better anticipated, especially in solid tumors, more accurate prognostication and implementation of specialized palliative care services can occur. One study of Medicare patients showed that patients with cancer were more likely to utilize hospice than those with other chronic illnesses because of the more predictable trajectory. ⁹ More research is needed to validate this trajectory in the face of new targeted treatment modalities.

Organ failure: A more erratic trajectory with punctuated periods of decline likely correlating with acute exacerbations. ¹ Each exacerbation may result in death but is often survived with gradual deterioration in health and functional status. Timing of death is less certain than in cancer. Perhaps as a result, patients with congestive heart failure (CHF) and chronic obstructive pulmonary disorder are more likely to die in hospital and less likely to receive hospice services nor understand the likely progression of their illness.^9–12 Other take-home points regarding the organ failure trajectory include the following:

• The functional decline for CHF has been shown to be particularly heterogeneous.^2,13 Some hypothesize that this may be related to comorbidities and/or research methodologies. ¹³

Sudden death or decline: An abrupt change from normal physical function to either death or significant medical disability, often as a result of trauma or an acute cardiopulmonary/neurologic event. Many times there is little or no prior interaction with the health system nor a recognizable pattern of functional decline preceding the event.^1,9 Thus, intense displays of shock or anger are common from family members when clinicians break bad news. See Fast Fact #305. Loved ones are at increased risk for depression and complicated grief as they adjust to the new medical reality after the event.^17,18

Clinical Use

Although there is no known published data assessing the effectiveness of utilizing the illness trajectories as a clinical teaching tool, describing or even diagramming these illness trajectories with patients and families may be a concise communication technique to set expectations and offer guidance regarding the anticipated impact of chronic illness on daily life. Clinicians should be aware of the significant variability in the medical literature regarding the validity of these illness trajectories as well as the limitations in the way functional decline is measured between studies. Therefore, it is vital that illness trajectories be re-evaluated as the condition evolves. In particular, certain patterns such as an abrupt functional decline or frequent hospitalizations may indicate the need to readdress goals of care.