What happens in the moments just before and right after death? Will it be painful? Is there an after-life? Religious beliefs and intellectual convictions influence our expectations, but none of us has direct experience to rely on. Dying patients can feel uncertain about what they’ll encounter as they approach and experience death. Caregivers and practitioners may feel uncertain about how to address this subject with their patients. An individual’s coping efficacy can influence how they manage information and uncertainty.¹
Those who work with the dying can gain new perspectives by exploring theories and research related to handling uncertainty.²⁻⁵ One such theory, the Theory of Motivated Information Management (TMIM), addresses why and how people intentionally manage and cope with uncertainties, and how effective they may be at this process.¹⁻⁶
Theory of Motivated Information Management
According to TMIM, the management of uncertainty involves three phases: the interpretation phase, the evaluation phase, and the decision phase. During the interpretation phase, individuals feel uncertainty about a challenging situation. They examine the extent and amount of uncertainty they feel and compare it to the amount of uncertainty they want to feel about the issue.
The gap between an individual’s actual level of uncertainty and their desired level of uncertainty can lead to feelings of anxiety or other emotions, such as fear, nervousness, or happiness.⁶ The larger the discrepancy, the more the emotion they are likely to feel. When individuals feel uncertainty beyond what is comfortable for them, they can become motivated to look deeper and find ways to deal with the challenge.
In the evaluation phase, individuals consider the potential outcome of an uncertain situation and predict what is likely to happen if they took a particular action.¹ They may expect a negative or positive outcome. Individuals also consider how important or critical an outcome is and how likely it is, based on their own perception.¹ Their assessment of the potential outcome can influence how they manage information and how they assess efficacy.
During their evaluation, individuals consider diverse factors, including the ability to gather, manage, receive, share, and transmit information.¹ For example, communication efficacy addresses how well an individual thinks they can carry out the tasks included in managing the information, whether they are working alone or interacting with another person.
An example of intrapersonal communication efficacy can be how capable a person is to look up information online. Interpersonal communication efficacy is how able a person is in effectively communicating a need to others. In addition, target efficacy describes both whether a person thinks the target will be able to understand the situation and how trusted the target’s information is as a source or how willing the target is to share information.¹
In the decision phase, individuals choose an information management strategy (eg, seek information or avoid it) based on the assessments made and/or the level of emotion caused by the uncertainty discrepancy.¹
Coping Efficacy
The benefits and circumstances of effective coping have been studied in a wide range of health contexts.⁷˒⁸ For example, coping efficacy has been shown to decrease risks for depressive symptoms in African American children and to mediate the negative association between activity limitation due to a disability and perceptions of independence.⁷˒⁸ Family support correlates positively with coping efficacy and can be measured by levels of encouragement and conversation, which are relevant for critically ill patients.⁹⁻²¹
Humor is a noted coping strategy that is linked to life satisfaction.¹¹ In addition, multiple researchers have shown religion and spirituality to offer successful coping mechanisms.¹²⁻¹⁶ However, despite all the research done on coping, there has been no research on perceived ability to cope with a cancer patient’s death under the theoretical framework of TMIM. In the context of a gravely ill cancer patient, for example, coping efficacy can be defined as the patient’s perceived ability to handle their own death or dying status by means of social networking, financial resources, emotional or other resources.¹ For a caregiver, coping efficacy is the perceived ability to handle the patient’s death and dying.
The Influence of Religion and Spirituality
In general, religion and spirituality have been shown to have a positive influence on individuals lives. Researchers looked at coping and church support, spiritual meaning, meditation, prayer, and church attendance as it relates to health.¹⁷ Adolescents who were religious also reported less negative health outcomes, such as lower rates of early sexual initiation and risky health behaviors, as well as more positive health outcomes, such as coping during times of physical illness.¹⁷
Spirituality was found to be a crucial variable for patients responsiveness to a cancer diagnosis, especially for women with breast cancer.¹⁸˒¹⁹ In these cases, a belief in religion was shown to lead to better health conditions, lifestyle choices, and improved morale.²⁰˒²¹
Religion influences a patient’s coping ability by helping to relieve stress and to maintain a sense of his/her life’s purpose.¹³˒²²⁻²⁵ Little research has been done directly on how religion and spirituality help patients cope with dying or with the idea of death. However, when researchers looked at a population of older, terminally ill cancer patients, they found that higher spiritual wellbeing correlated with lower anxiety.²⁶
Religion and spirituality have been shown to be involved in the coping mechanisms of caregivers who have lost or were close to losing a patient. Religion and spirituality can be the glue that makes a patient-caregiver relationship stronger, which in turn, can help the caregiver cope via social support.¹³˒²⁷ Likewise, religion and spirituality have been shown to benefit caregivers coping with the stresses of Alzheimer’s patients.¹⁴˒²⁸ When a caregiver copes better, it’s likely that patient coping can also improve.¹⁴˒¹⁶
Religion and spirituality can provide a successful coping mechanism for suffering patients.¹³˒¹⁶˒²⁴˒²⁷˒²⁹ Interestingly, if religion/spirituality improves coping and coping efficacy also improves coping, then it may be that religion and spirituality enable multiple mechanisms to better a patient’s ability to cope. ²³˒ ²⁶˒²⁹
Religion and spirituality have similar beneficial coping effects for informal caregivers, such as children and siblings, but these individuals also face life after the patient’s death. Informal family caregivers often become emotionally, financially, and socially involved with the terminal patient due to their familial or close relationship. When terminal patients and caregivers learn from a medical provider that nothing more can be done for the patient and that end-of-life care should be considered, there is much uncertainty for caregivers surrounding finances, funeral arrangements, advanced care directives, and palliative care.⁷
However, the uncertainty and fear may be so large that some people choose not to manage it until after the patient has passed away, which is often too late.³⁰ On the other hand, beliefs based on religion or spirituality have helped mothers of deceased children to cope and be comforted by continuing bond expression, for example having dreams in which the deceased communicates with the living.³¹⁻³³
The relationship between patients and caregivers is inherently interpersonal and intimate. Anxiety, fear, and uncertainty surround the topic of death and dying for both caregivers and patients. The intimacy in the relationship drives and forces most caregivers to manage the uncertainties that come with a patient’s death or dying. Conversely, lack of communication about the dying process between caregivers and the terminally ill can contribute to negative health outcomes. Religion and spirituality offer benefits to caregivers’ and patient’s coping efficacy and this potential benefit may be further understood through the perspective of TMIM.