Distinct illness trajectories have been described at the end of life for frailty/dementia, cancer, and organ failure (see reference below). These trajectories can provide a framework for addressing patient and family expectations of what will happen regarding their health.
A pattern of dwindling cognitive and/or physical disability that may progress over several years. In the last year of life, 70% of dementia patients require assistance in ≥ 3 activities of daily living, making these patients at increased risk for nursing home placement and caregiver breakdown.
A relatively stable period of physical function followed by an acute decline in the last few months of life; the timing of steep decline ranges between 1 to 5 months before death. Cancer patients may also experience more predictable patterns of spiritual distress with peaks at diagnosis, disease recurrence, and the terminal phase of illness.
A more erratic trajectory with punctuated periods of decline likely correlating with acute exacerbations. 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. Patients with congestive heart failure (CHF) and chronic obstructive pulmonary disorder (COPD) are more likely to die in hospital and less likely to receive hospice services. Other points regarding the organ failure trajectory:
- The functional decline for CHF has been shown to be particularly heterogeneous.
- Prognosis is linked to patient goals regarding acceptance, repeat hospitalizations, and treatment of potentially reversible complications.
- Elderly end-stage renal disease patients who start hemodialysis may be more likely to have an illness trajectory similar to sudden death.
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. There is often little or no prior interaction with the health system, nor is there a recognizable pattern of functional decline preceding the event. Families are at increased risk for depression and complicated grief as they adjust to the new medical reality after the event.
Describing 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.
See reference for more information.
Adapted from Barker PC and Scherer JS. Illness trajectories. Palliative Care Network of Wisconsin. Fast facts and concepts #326. Internet. Accessed on May 22, 2018.