Clinical Geriatrics

In medicine, we tend to think about end-of-life issues as ethical or legal concerns. What would the patient want? What would be in his or her best interest? If he or she cannot decide, who is empowered to make these decisions? We believe that if such issues are addressed and the appropriate legal papers are signed, then the clinical care will correspond to these decisions. But in actual practice this is usually not the case. If there is an available intervention, it will be applied.

Perhaps the best evidence for this comes from a randomized controlled study of palliative care in 100 patients with advanced dementia admitted to a tertiary care academic center.1 Patients with families who were agreeable to the intervention of a palliative care team were randomized to this intervention or control. Over the ensuing three years, despite the families’ willingness and the efforts of a palliative nurse specialist and a geriatrician, there were almost no differences in the care that was actually provided: no difference in the number of rehospitalizations; length of hospitalization; or the proportion who died in hospital. Perhaps more distressing is that there was no difference in the proportion who received systemic antibiotics (75% overall), intravenous (IV) therapy (74% overall), long-term feeding tubes (69% overall), or new feeding tubes (44% overall). One of the few differences was that those in the intervention group were more likely to have palliative care plans (11 vs 2), but in nine of those 11 cases, this was not adopted until discharge, and thus never acted on.

What makes this finding even more perplexing is that on quiet reflection, most physicians who care for elderly persons with dementia and most of the families of such people want the very opposite. This is evidenced by a national survey of over 800 physician members and 1000 nonphysician members of the Gerontological Society of America, as well as 500 families of persons with dementia recruited through the Alzheimer’s Association.2 Persons in end-stage dementia were described in the following terms:

• Need complete assistance with eating and toileting
• Can no longer recognize themselves or their loved ones
• Cannot do any of the things that used to make them happy
• Cannot talk anymore
• Have medical complications of dementia, such as falls, urinary incontinence, or pneumonia

Participants were then asked which of the following five levels of treatment they thought would be most appropriate:

1. Do everything possible to keep the person alive. Treat every illness such as hypertension or diabetes. Use feeding tube, cardiac resuscitations, and respirators
2. Same as level 1, but no cardiac resuscitation
3. Same as level 1, but no cardiac resuscitation or respirator
4. Same as level 3, but also stop treating acute conditions except pain
5. Same as level 4, continue treatment of chronic conditions and pain, but no tube feeding

Over 60% of physicians and 70% of family members chose level 5. So, why is the care that is actually provided so different from what the great majority of clinicians and family members believe is appropriate? Probably because clinicians do what they are paid to do. Our system pays for interventions and does not pay for withholding them. Almost everyone in the system benefits from this arrangement, except possibly the patient, the family, and the taxpayer. Case in point: a patient with end-stage dementia spikes a fever. If he or she is at home, imagine the family trying to arrange an emergency home visit from a physician! They have no choice but to call an ambulance. If this occurs at a nursing home, it is easiest for the staff to arrange a transfer to the Emergency Room. There is no financial disincentive. If the nursing home holds the bed, Medicaid will pay for it even with the patient gone.