Two New England Journal of Medicine (NEJM) studies published yesterday show how medical conclusions based on the perceived quality of life of certain groups or of older people can pose risks in the areas of Advance Care Planning and “comparative effectiveness” research. Central to the Health Care Restructuring bills is the concept that cost cutting measures will be sufficient to make up for financing shortfalls. One of these measures is the promotion of advance directives. There have been several recent studies showing how advance directives and end of life conversations generally yield cost savings. For more see here.
The NEJM studies focus on two conditions in particular – Kidney Dialysis and Dementia.
One of the studies, entitled “The Clinical Course of Advanced Dementia,” concluded that, “Distressing symptoms and burdensome interventions are also common among such patients [patients with high 6-month mortality rates]. Patients with health care proxies who have an understanding of the prognosis and clinical course are likely to receive less aggressive care near the end of life.”
The study states that in the last three months of life 49.7% of those in the study underwent at least one “burdensome intervention.” Those included hospitalization, visits to the ER, parenteral therapy or tube feeding. The patients were mainly treated for pneumonia, fever, and eating problems -- complications frequently experienced by patients with advanced dementia.
As the study found, these “burdensome interventions” were less likely to be given to those who had a surrogate decisionmaker. In those cases, the study fails to highlight that the patients were not dying from the underlying dementia, but from starvation that a feeding tube could have avoided or an infection that ‘parenteral therapy’ (also known as an injection or infusion – probably of an antibiotic) could have treated. The phrase “burdensome interventions” is a conclusion based on a very subjective determination. It employs a value judgment that a person with dementia lacks value or an adequate quality of life. An antibiotic for a fever or a feeding tube would certainly not be considered “ burdensome” for –for example - a young mother with an injury.
The study suggests that instead of life-preserving interventions more attention should be given to treating distressing symptoms such as dyspnea (a breathing problem characterized by unpleasant or uncomfortable respiratory sensations), pain, pressure ulcers, aspiration, and agitation. The study implies that more emphasis ought to be on keeping those near death comfortable – an admirable goal – but not one that ought to be coupled with neglect of treatable conditions like fevers and dehydration.
This sort of study, and others like it that are becoming more prevalent, will pave the way for two different dangerous roads. The first is in the area of advance planning.
The study shows that patients with proxy decisionmakers tend to die from non-treatment (and save money). When a person being counseled to make advance decisions about accepting or rejecting treatments (for oneself or for a person for whom he or she holds a health care power of attorney) is encouraged to think of these sort of life-preserving treatments as“burdensome” for those with dementia, then the counseled individual will no doubt be more likely to authorize denial of treatment that will cause death– perhaps unknowingly – from fairly commonplace non-treatment.
The other dangerous road is that of comparative effectiveness research. Without proper protections, studies such as this one could be cited as comparative effectiveness research and be used to make coverage decisions in ways that treat the life of a person with dementia as having less value This could result in outright denial of medical coverage for many treatments that are simple and necessary to preserve the lives of patients with dementia.
The other study, entitled, “Functional Status of Elderly Adults before and After Initiation of Dialysis,” looked at nursing home patients who received dialysis. It did not include a comparison group of patients who did not receive dialysis, so a true comparison rate of extra life gained by dialysis is unknown. The study shows that despite dialysis, there was “substantial and sustained decline in functional status.” The danger is that such studies may be used to deny coverage (or encourage patients subjected to “advance care planning” to reject) dialysis because it does not “restore health or functional status” despite the fact that it likely prevents a hastened death.