We attempted to set up a study in which PC-ACP was evaluated to assess whether patients were more likely to receive the end-of-life care they desired assisted by surrogate decision makers. The potential impact of the results was reduced since we had anticipated more deaths during the study period (198 versus the 110 seen). We also anticipated about 50% of the patients would make their own decisions versus the 74% in the study
Other research has demonstrated that a person’s choices for end-of life treatment may change over time. If the patient is not able to express their modified wishes near the time of death, the healthcare team usually relies on a surrogate decision-maker. At the end of our intervention the need for the patient and surrogate to continue to discuss the issues was mentioned. During the post-death interview some of the experimental surrogates described the changes communicated by the patient in subsequent discussions.
One serious concern is whether or not advance care planning such as that offered in this intervention will steer patients toward less intervention as they near the end of their lives. The results of this study indicate a trend towards intervention patients choosing less intervention-intensive care, but not statistically so. Also, there was no difference in length of life between groups, suggesting that the choices following ACP alone do not shorten life. There was a significantly higher number of intervention ESRD patients choosing to withdraw from dialysis. Perhaps receiving dialysis is seen as a default position unless the ability to choose interventions is explored.
Generalizability is limited since only one state was involved, and the sample was mostly Caucasian, similar to residents of Wisconsin. Only two chronic illnesses were used; however, these are commonly occurring. The results may not generalize to other illnesses or to younger individuals.
The intervention was given once without a booster. Although an assessment for a change in preference was abandoned early in the study, it might have functioned as a booster. Perhaps a periodic assessment by the primary care provider would strengthen the effect of the intervention. The variable time from intervention to death was unavoidable but may have weakened effectiveness.
There were a number of issues affecting the amount and quality of the data obtained after the patient’s death. One issue was that was that the surrogates did not see themselves as making decisions. They did not recognize that their support of the patient choices was a decision. There were also issues in obtaining medical records from non-study sites. Some patients did not have a medical record since they died at home. Others were in institutions reluctant to release records.
Clinical and Research Implications
Patients and surrogates were usually appreciative to have such discussions. They asked why no one had raised these issues earlier. Reluctance of health professionals to hold these sensitive discussions should be reduced with training. Routinizing the discussions requires the designation of an individual to hold the discussions, allowing time, and periodically checking to see if preferences have changed.
Additional research to describe the factors that influence a patient’s end-of-life care choices is warranted. Future research will need to assess the impact of a booster for the initial discussion. Also the impact of the dissemination of the preferences beyond just the immediate surrogate could be beneficial.
Since many patients continued to make their own decisions, the process of advance care planning needs to not just prepare the surrogate but also the patient to make these future decisions. When we are doing disease-specific planning, we are really helping prepare both the surrogate and the patient to face future decisions in a more informed and prepared way.