"Girlfriend in a coma, I know,
I know-it's really serious....
NO, I DON'T WANT TO SEE HER."
--Morrissey and Marr
Many adult patients, including the overwhelming majority of those at the end of life, are not able to make their own treatment decisions. The numbers that comprise this cohort of the incapacitated tell the tale: Those who cannot make their own decisions include 70% of older adults, 40% of hospitalized adults, and about 95% of critically ill adults.
Therefore, it is standard of care for the medical community to rely on surrogates to assist in making treatment decisions for these patients. However, is anybody paying attention to the psychological impact that such momentous decision-making can have on these surrogates (who, for the most part, are neither trained nor experienced in end of life or chronic pain issues)? How damaging would a negative psychological fall-out from such responsibility be to, say, a sister, or a spouse? Most patients will declare that they do not want to be a burden to loved ones; but is being an end of life decision-maker in some cases the ultimate burden?
An analysis published earlier this year in the journal "Annals of Internal Medicine" concluded that the aforementioned decision-making does indeed place emotional stress and burden on at least one-third of surrogates; and this burden is often heavy, lasting from months to years. The most common negative effects cited by surrogates were stress when making decisions, guilt over decisions made, and lingering doubts as to whether the correct decision was indeed made.
These negative emotional burdens are obviously detrimental to the surrogate decision-makers; however, these burdens can also reduce the cognitive processing of complex clinical scenarios (loved ones suddenly are unable to "think straight"), and thus perhaps negatively impact the patient. This latter problem can be at least somewhat overcome by assuring that the surrogate know the patient's treatment preferences, and be educated as to which treatment modalities are consistent with such preferences. This is where the patient can truly help those who might need to help in the future: Advance directives need to be completed so that one's own medical care can be guided, mapped out for any surrogate, so that future surrogate burden may be reduced.
In contrast, purposeful decisions to not complete an advance directive in the misguided attempt to protect one's loved ones often fails to do so. Absence of evidence regarding the critically ill patient's treatment preferences appears to increase the burden on surrogates.
Interestingly, there is some evidence that shared decision-making between surrogates and clinicians can lead to problems, as physicians appear less able to predict an individual patient's treatment preferences when compared to loved ones. In other words, the inclusion of a physician in the decision-making process may lessen the chances that a given patient will be treated consistent with life-long values and treatment preferences.
The end of life chapter should be one where treatments are identified that are consistent with the patient's preferences, respect is given to the decision-making process, and patient and loved ones are protected.
