BELIEF, PAIN, AND ADVANCE CARE PLANNING
Another dimension that leads to disparities in how people approach illness and ACP is in relation to the different ways that people view pain and suffering based on religious and spiritual beliefs. Deriving deep religious significance in the experience of pain has implications for addressing pain and suffering that may accompany the dying process. The individual facing the potential for death, or the family facing the potential death of a loved one, may not only seek to treat the cause of the impending death, but they may search for meaning in these experiences, including experiences of pain.
Some may view pain as a form of divine punishment, either for one's own sins, the sins of other people, and/or the sins of one's previous lives. Eastern belief systems, such as Hinduism, believe that pain and suffering are from misdeeds in previous lives. The attempt to avoid pain may be seen as avoiding the natural consequences of being human.
Despite more contemporary religious teachings to the contrary, Christianity, Judaism, and traditional Islam relate pain and suffering to punishment. Pain may be viewed as a means of atonement for one's own sins or the sins of humanity. This is illustrated in the Christian tradition of Jesus's crucifixion for atonement of sin and the Hindu belief that there is virtue in the endurance of pain.
Cusick (2003) notes that punishment is not always seen as a negative experience, but rather as a time for potential growth. Some people believe that pain and suffering provide greater insight into the soul and the possibility of spiritual transformation. Pain and suffering can force the individual to dig deep within himself/herself for strength to endure and experience
mystical transformation. Transcendence may be seen as an opportunity arising from the pain experience.
Another perspective of the importance of pain in relation to spirituality is that of a test or competition. There may be a sense of virtue in seeing how much pain and suffering one can handle or endure. Voluntary endurance of pain and suffering may offer the opportunity to discover one's own limits and/or strengths, the opportunity to connect with one's self at an intimate level. This is especially possible when the individual and/or family views pain or suffering while dying as something that is intended to draw them closer to God.
What one believes about the origin and purpose of pain may impact the desire to engage in ACP, as it may be viewed as action intended to shorten time or lessen the degree of suffering. Viewing illness and pain as punishment, individuals may be disinclined to do anything to anticipate or plan for reducing or relieving the suffering through ACP. Consequently, interpretations of pain and suffering can influence the willingness of individuals and their support networks to utilize advanced directives (ADs) as a way of directing their EOL and/or dying experiences, especially to relieve potential suffering (Cusick, 2003).
RELIGIOUS PERSPECTIVES ON ADVANCE CARE PLANNING AND ADVANCE DIRECTIVES
While ADs are intended for individuals to record their wishes for health care should they be unable to communicate them when they are extremely sick or unconscious, that is, to indicate when to discontinue (or not initiate) life-support technologies, ADs have also emerged to ensure that religiously sanctioned care is given. Several religious groups have developed their own religious ADs out of concern there may be undertreatment via life-support technologies, that is, treatment might be prematurely discontinued, denied, or withheld at times when such actions may violate religious principles.
Religious concerns arise when there is a greater obligation to preserve life than there is concern for the “right to die.” In addition, there may be concerns about limits set on health care and health care expenditures that threaten the very value of life.
An example of guidance regarding health care decision making within a religious context is a Catholic Health Association of the United States (CHAUSA, 2009) publication that provides guidance to help people express their wishes regarding health care treatments. It states, “There is no ready made answer that applies to all situations” (p. 17), but goes on to provide discussion of various considerations for assessing burdens and benefits of treatment decisions. It describes Catholic moral teaching and what the teaching may mean in various medical situations. Another approach for ensuring religious principles and doctrine are followed is for individuals to name a specific religious health care proxy to act in the event the individual lacks capacity or is unable to communicate his or her own wishes and preferences (Massachusetts Catholic Conference, 2010). In this case, the religious direction is stated as follows:
I direct my Health Care Agent to make decisions based on my Health Care Agent's assessment of my personal wishes, moral values and religious beliefs as stated below or as he/she otherwise knows: (here state your personal wishes or moral religious beliefs.) An example of such moral and religious beliefs is the following: I am a Roman Catholic. It is my wish that my Health Care Agent make health care decisions for me, which are consistent with the authentic teaching of the Catholic Church and based upon my profound respect for life and my belief in eternal life (p. 12).
Then the document goes on to stipulate several specific instructions for appropriate pain medication that will not cause or hasten death, food and water when capable of sustaining life, standard comfort care, and special instructions if pregnant.
A religious organization representing Orthodox Jews has developed the Jewish Health Care Proxy (Agudath Israel of America, 2008). This document appoints and directs an agent to make health care decisions in accord with Jewish law and custom, specifically in accordance with strict Orthodox interpretation and tradition. In addition, a specific Orthodox rabbi is named for consultation if there are any questions as to requirements of Jewish law and custom. This document includes directions for organ and tissue donation and disposition of the dead body.
Certainly these specific documents can provide the context for critical discussions among the health care professionals, the patient, and their loved ones to identify values and preferences that arise from their religious beliefs. However, Grodin (1993) argues that because of the complexity of EOL events and the interpretational dimensions of health care decision making at EOL, there are both strengths and weaknesses to specific religious ADs that can actually serve to undermine the goals of the individual for achieving religious and health care goals (Grodin, 1993). The specific documents and requirements to seek religious consultation may be too rigid to accommodate the range of choices and decisions that may need to be considered. For instance, given the complexity of illnesses and medical options, can written instructions cover all conditions and possibilities that may arise for a given person? Could the specificity of instructions actually lead to controversy and confusion?
Controversy and confusion can arise due to numerous factors. ACP can be focused on issues of autonomy, empowerment, and the individual's
rights—principles, which may be in contrast to religious doctrine that may be more concerned with duty, obligation, community, and beneficence (Steinberg, 1989).
Families and friends may be unable to see the specific reality of the individual's condition when they are still hoping for a cure or another treatment. The judgment of families and friends can also be obscured by their own anticipatory grief of the loss, or by previous experiences they have encountered. In addition, the family and friends may receive even different interpretations from chaplains, clergy, and other people they turn to for spiritual support.