10.6 Focus on Psychological Research – Do End of Life Advance Care Directives Adversely Impact Hope or Anxiety Among Those With Advanced Cancer?
The Importance of Making End-of-Life Care Decisions and Communicating Them
Life-extending and life-support technologies are generally viewed as great medical advances that have extended life expectancy and have, in many instances, allowed people to survive events that otherwise would have been fatal until their body resumes autonomous functioning. Unfortunately, there are many other times when a person’s body is kept viable and it is unclear to loved ones and medical care providers whether the person will ever regain consciousness, whether they are socially, cognitively, or spiritually still alive, and when to make the decision to remove life support. In sum, “life support” is neither unequivocally good nor unequivocally bad. It can extend the quantity and quality of life in some instances but can prolong death in other instances. The current and future state of affairs is often rendered ambiguous and decisions that need to be made by loved ones are torturous and can result in years of regret. Most of us would agree that we would not want our healthcare and end-0f-life decisions made by individuals who do not share our personal values and our unique understanding of what “quality of life” means – whether those individuals are healthcare providers or even family members. As such, it is important for us to develop clarity about what kind of care we want and – perhaps more importantly – what kind of care we don’t want at the end of a terminal illness or condition. It is at least as important to also communicate those preferences to loved ones and healthcare providers. Unfortunately, despite most individuals agreeing that this is true, the majority of Americans have not completed advanced care directives. One investigation of over 2000 older adults affirmed that even among the demographic group with the highest rate of documented advanced directives (older White respondents – 44%), the majority of individuals have not documented end of life care preferences (Huang et al., 2016). This study also attested to the lasting and continuing impact of historical care disparities as a function of race, as Black respondents (24%) and Latino respondents (29%) had even lower rates. There are likely many reasons for such abysmal rates – including apprehensions about contemplating one’s own mortality, lack of information about how to make and document such preferences, and procrastination. Some have suggested that there may even be reluctance among terminally ill individuals to forego life extending support that may be futile out of concern that they may not get optimally aggressive care if limitations are placed on the care team by advanced directives. The study described below speaks to this concern based on the reports of dying individuals themselves.
Advanced Directives, Hope, and Anxiety Among the Terminally Ill
Some physicians have expressed concern that the process of advanced care planning (ACP) will diminish patients’ hope and raise their anxiety. The possibility of death is not a comfortable topic for patients or physicians and – in light of the emotional weight of such conversations – it can be easy to focus on physical symptom management, treatment regimens and so forth and to (intentionally or unintentionally) delay ACP indefinitely. To evaluate whether such conversations do actually increase anxiety or decrease hopelessness among patients with advanced cancer, Green and colleagues (2015) studied 200 individuals with cancer who were expected to live 2 years or less. These individuals were randomly assigned to an intervention condition which promoted ACP and provided an online tool for doing so or to a control condition (who was provided the same information after the study was over). Knowledge in ACP and satisfaction with communication and care were higher in the intervention group and there was no evidence of increased anxiety or hopelessness as a function of this process. In short, although it is easy to speculate about adverse emotional impacts of discussing difficult end-of-life issues with patients or clients, it is typically more helpful to trust them to make their own decisions, determine their own comfort level, and to promote autonomous decision-making. Not only is deprivation of such communication paternalistic (and arguably unethical), it may be based on assumptions that are simply wrong as evidenced by this study.
