When people face a health crisis such as a life-altering disease or catastrophic injury, much of what is happening feels outside of their control. Although people respond differently, these episodes may trigger a sense of helplessness, prompting them to consider existential questions: Why did this happen? Is this my fate? Is it God's will? In response, some people choose to turn for support to spiritual or religious practices: meditation, prayer, or other connection to a sense of something bigger than themselves such as a higher power or nature. Puchalski, whose work in spirituality and health care is frequently cited, notes that individuals who are spiritual “may utilize their beliefs in coping with illness, pain, and life stresses,” and there are indications that some who rely on spiritual beliefs and practices may have a more “positive outcome and a better quality of life” (Puchalski, 2001, p. 354). Importantly, it is the individual's choice to engage in these practices, as part of his or her self-determination and desire to find support and express his or her voice.
For the professional case manager, our role as advocates requires us to be sensitive to each individual's spirituality and/or faith practice, including having no religious beliefs or spiritual philosophy. This is a significant part of treating the whole person. From acute care to outpatient treatment or a specialized area such as workers' compensation, case management best practices require us to consider every aspect that impacts an individual's health and recovery. This awareness is part of cultural sensitivity to understand that one's upbringing and personal views, including faith tradition, can influence how each person responds to a serious health episode.
In some case management practices such as hospice, understanding the person's faith tradition or spirituality is part of intake. In other areas, including acute care, outpatient care, or workers' compensation, spirituality and faith traditions may seem removed. Yet, when someone faces a serious diagnosis or life-altering illness or injury, faith and spirituality are often part of the picture. This puts the case manager, as the advocate, at the intersection of spirituality and health care, which requires us to ask questions that ascertain where the person finds support, draws strength, or seeks hope and peace.
Case managers can never impose their views or beliefs on another; to do so would violate ethical standards. The Code of Professional Conduct for Case Managers of the Commission for Case Manager Certification (CCMC) requires board-certified case managers to “respect the rights and inherent dignity of all their clients” (“clients” refers to individuals receiving case management services) and to “act with integrity and fidelity with clients and others” (CCMC, 2015, p. 3). Respect for each person's faith tradition, spiritual practices, and other personal viewpoints is essential to giving each individual a sense of empowerment.
As my coauthors and I explore in “Addressing Spiritual and Religious Influences in Care Delivery,” featured in this issue, the knowledge domains and essential activities of case management require professional case managers to be sensitive to the individual's religious or spiritual beliefs. The individual and/or the family/support system are integral to devising and implementing plans, making it critical that their religious or spiritual beliefs be incorporated. For example, Jehovah's Witnesses do not accept blood transfusions (Jehovah's Witnesses, 2018); a woman in labor, who is a follower of Islam, must be attended by a female doctor (Islam Question and Answer, 2018).
For some people, the emotional upset, trauma, and mortality fears associated with a major health episode may lead them to reconnect with the faith tradition of their upbringing, or it may cause them to question those beliefs. An individual may also decide that spirituality and religion have no bearing on their life or health care choices. Beliefs and practices can be as unique as the individuals themselves.
This calls to mind a powerful example from when I worked in a hospital in Baltimore. I was the case manager for a man who had been severely injured in a vehicular accident that caused a cervical break, leaving him paralyzed from the shoulders down and intubated for life support. In his 50s, with no living relatives, the man expressed concern only for his dog (a home was found for the animal). As his case manager, I was with the man when he was evaluated by the psychiatrist and informed about the extent and nature of his injuries and the prognosis that he would remain paralyzed. The focus of treatment was on stabilizing him so he could be moved to a nursing home.
The man, who could not speak, kept shaking his head “no.” He made it clear, by answering a series of yes/no questions, that he wanted to end life support. He understood that he would die almost immediately; that was what he wanted. As we prepared him for this step, I explained the process: The monitors would be turned off and the tubes removed. I asked him whether he wanted to see the chaplain; the man shook his head “no.” He indicated no spiritual practice or religion. There was no one he wanted to see before he died.
As his case manager, I was the one who had been with him since he was brought into the hospital. I asked whether he wanted me to stay with him; he nodded “yes.” He liked music, so I turned on a jazz station on the radio. His only sense of feeling was on his face, so I touched his forehead and cheeks while he was extubated. He died within minutes. Attending his death was, for me personally, one of hardest things I've ever done. And yet, it was a privilege to be his advocate in his final moments to ensure his self-determination. He was empowered and supported; his choices directed his care.
Reflecting on this episode, I am reminded of the importance of each individual being empowered and autonomous in decision making regarding his or her health care choices. As case managers, we provide information about the choices and the consequences; we tell individuals and/or their families/support systems about the resources available, including for emotional or spiritual support. We show no judgment or bias regarding the choices made, whether they align with our own personal beliefs and philosophy or are completely different. Our primary role as advocates compels us to support and provide services to people who face health crises that may make them feel vulnerable and afraid; we help them understand that they do have choices. As case managers, we ensure each person retains self-determination in accordance with the cultural and spiritual influences that help define the whole person.