Consistency Between the Content of a Living Will with the Person's Actual Dying Experience
Methods: Data were from the Health and Retirement Study (HRS), a nationally representative sample of Americans over 50. The study focused on participants who died between 2002 and 2010. Only the deceased who had a living will at the time of death were included in the sample. Furthermore, among those who had a living will, only the cases in which instructions in living wills were applicable to their illness statuses were included (N=2,158). Data were based on the exit proxy interviews. Two separate outcomes were examined: troubling pain and life-prolonging equipment use. They are both dichotomous variables. Two key independent variables that are related to the content of a living will were examined: whether the deceased had requested (1) all care possible to prolong life and (2) palliative care. Sociodemographic and illness-related variables were controlled for. Logistic regression analyses were used.
Results: The overwhelming majority of the deceased had requested palliative care (93%) and those who had requested all care possible only accounted for 6%. Having expressed a desire to receive palliative care was a significant predictor for troubling pain; the odds of having troubling pain for the deceased who requested palliative care were 56% lower than the odds for those who did not (OR=0.44, p<0.01). In contrast, having specified a desire to receive all care possible was not associated with the use of life-prolonging devices.
Conclusion and Implications: The study found that requesting palliative care in one’s living will is effective in managing pain. On the other hand, a person’s request to receive all care possible was not associated with the use of life-prolonging devices. There are a couple of potential explanations for this null finding. First, families or physicians might have had different opinions than a dying person. Another possibility is that the dying person’s living will was not accessible when needed. This barrier in accessibility has been pointed out as a problem of living wills, but this information was not available in the data. Another potential explanation for the null finding might be due to the proxy’s understanding of what life-support equipment is. The questionnaire included only a respirator as an example of such equipment although life support equipment can mean various items, such as a kidney dialysis machine, infusion feeding pump, or ventilator. Therefore, the proxy’s understanding may have influenced their answer. Future research needs to examine more detailed and objective information about a person’s treatment as well as the accessibility of living wills during the dying process in order to more fully examine the effects of living wills on the receipt of care.