Spiritual Pain and Distress
"Pain is a ubiquitous feature of human experience.”
Good et al. (1994:1)
Framing the Issues and Importance to Providers
Pain is defined as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage and described in terms of such damage” (Mersky).
However, any pain is a subjective experience and cannot be seen as a standardized, easily defined entity in spite of efforts to define, measure, or describe it as with the McGill-Melzack Pain Questionnaire where patients can choose from more than 70 pain descriptors of physical pain such as its being aching, burning, crushing, dull, radiating, penetrating, sharp, stabbing, etc. (Morris 1993:17).
There are also cultural overlays of how to express pain, to whom, and when. “Physical” pain associated with particular areas of the body may be a culturally accepted way of expressing stress that everyone recognizes and addresses without having to confront difficult social issues directly.
Defining Spiritual Pain and Distress
It is to be expected that “spiritual” pain is just as elusive and difficult to quantify, although researchers are attempting to do so (Mako et al 2006). Spiritual pain is described in NANDA (1994:49) as the “disruption in the principle which pervades a person’s entire being and which integrates and transcends one’s biological and psychosocial nature.”
The City of Hope Pain & Palliative Care Resource Center Website offers numerous pain assessment tools on-line including one titled, “Pain, Suffering, and Spiritual Assessment.” For additional spiritual assessment tools, click here.
Anandarajah and Hight (2001) note that “spiritual distress and spiritual crisis” occur when a person is “unable to find sources of meaning, hope, love, peace, comfort, strength, and connection in life or when conflict occurs between their beliefs and what is happening in their life.” Sources list multiple defining characteristics of spiritual distress that may cause or indicate the presence of spiritual pain. Stoll (1989) and Pehler (1997) list similar defining characteristics, although Pehler also includes characteristics from several other studies. For both, the major characteristic was an expression of concern with the meaning of life/death or any belief system.
The lists included, but were not limited to anger toward God, questioning the meaning of suffering or the meaning of one’s own existence, verbal comments regarding an inner conflict about beliefs or about one’s relationship with a deity, an inability to participate in one’s usual religious practices, and more.
Note: At present, the preponderance of research related to spirituality and religion has been conducted from a Judeo-Christian perspective. Thus results report on issues related to God as understood within those religious traditions. Information reported in the following sections uses the terms that were used in the research cited. The concepts, however, may be considered in exploring the issues with children and families from other traditions that have different views of deities or transcendent beings or forces. Healthcare providers can take their cues from the patient or family members as to which term regarding the divine or supernatural or transcendent is most meaningful and use that term when speaking with them.
Rippentrop et al. (2005) conclude that the spiritual/religious beliefs of pain patients are different than that of the general population. The former appear to be less interested in reducing the pain in the world and they feel more abandoned by God. The relationship of spirituality and religion to pain in general patient populations remains inconclusive with studies reporting spirituality and religion related to higher levels of pain, to lower levels of pain, and unrelated to the severity of pain (Rippentrop et al. 2005:320). As with other research on the topic of spirituality and religion there are multiple variables that may obscure direct or indirect relationships.
Parents and Caregivers of Children with Disabilities or Special Needs
The response to having a child with a disability can vary greatly from one culture and religious group to another and even within any given culture or group. Seligman and Darling (2007:29) present several ways that families may view having a child with special needs:
- The child’s disability is seen as a blessing and an indication of the family’s strong emotional strength.
- The child’s disability is seen as good luck or as a blessing from God because they were deemed particularly special.
- A child’s disability may be viewed as a punishment from God. The past sins may be that of a family member or that of the child.
Caregivers may seek solace in religion (Seligman and Darling 2007:29):
- Religion helps them to accept their child’s disability more easily.
- The child’s disability may encourage them to look for more of a connection with God and for support within a faith community.
- God is giving them an opportunity to become better people.
A collaborative effort by the Elizabeth M. Boggs Center on Developmental Disabilities (2008) at UMDNJ-Robert Wood Johnson Medical School, The Center on Services for the Autism Community (COSAC), and The Daniel Jordan Fiddle Foundation addresses the issue of autism and faith. A task force of clergy, family members, and professionals assisted in the development of this guide that looks at ways to include children and adults with autism into faith communities. Strategies for supporting families, resources, and examples of real life stories are provided. Other resources about spirituality and disability can also be found on the web-site of the Boggs Center on Developmental Disabilities.
Loss, Grief, and Bereavement
“What could be more universal than death? Yet what an incredible
variety of responses it evokes." (Metcalf and Huntington” 1991:24)
Grief, the emotional response to a loss differs from the concept of bereavement or mourning, the “culturally patterned behavioral response to a death.” (Andrews and Boyle 1995: 366.)
Annemarie Bezold, Coordinator of the Grief Program in Fairfax County Community Services Board in Virginia conducts a monthly support group for families who have lost a child either in pregnancy or in the first year of life. While some parents find strength, comfort, and solace in spirituality and religion as they mourn, others experience more of a “roller coaster” relationship with God. (Personal communication with author August 30, 2007) Some question, “How could a loving God let this happen?” Some struggle with their relationship with God as they go from angry, to alienated, and then for many, eventual comfort again when they reconnect with God.
Some find comfort by believing that their baby is in “God’s hands” or has been united with deceased relatives. Some parents have viewed their child’s end of life as a “spiritual journey.” (Robinson et al. 2006). Not all parents find comfort in religion or spirituality when it comes to grief as evidenced by Balzer (2003) who describes his unsuccessful efforts to connect with a god; but he was able to find a “more peaceful and accepting relationship with the world through the death of his four-month old son.”
Children also experience bereavement and loss. Although often ignored, it is important to recognize that children may not have only emotional, but also spiritual needs. For more information about the spirituality of children, click here. Just as they go through developmental stages related to spirituality, children also developmentally approach grief. Moving from no cognitive understanding of death to seeing it as temporary and reversible to a realization that it is final and irreversible impacts a child’s understanding of and response to the events around him or her. It is not until pre-adolescence (8-12 years) that a child has an adult’s understanding of death.
Grief and developmental concepts of death are explained by Himebauch et al. (2005) in a helpful fact sheet for families and providers. Horchler and Rice, writing a “survival guide” about SUID and infant death, devote an entire chapter to “Children Grieving Children.” Child authors range in age from five to fourteen years. Several relate to their grief on a spiritual and religious level.
Suggestions for Providers
In some cases, it has been suggested that once physical pain is under control, patients are better able to recognize spiritual pain that may have been overshadowed by the intensity of physiologic discomfort. It is critical to differentiate where psychological conditions may overlap with spiritual pain because of treatment options. Some studies suggest that once physical pain is managed appropriately, patients can then focus more on their “spiritual” pain.
JCAHO, the Joint Commission on Accreditation and Healthcare, mandates a spiritual assessment of needs for any family who has a child receiving end-of-life care (Robinson et al. 2006:e720). For more information about spiritual assessments, click here. For the American Academy of Pediatrics (AAP 2000), spirituality is encompassed within good pediatric palliative care and a spiritual advisor is recognized as an important member of the provider team. However, there is also recognition about the potential of adverse effects of some spiritual and religious beliefs. An example may be that parents will choose to withhold treatments based upon such beliefs. The American Academy of Pediatrics (1997), Committee on Bioethics, has issued a statement that recommends that health care providers “show sensitivity to and flexibility toward the religious beliefs and practices of families,” and seek to make collaborative decisions. Nevertheless, the AAP “opposes religious doctrines that advocate opposition to medical attention for sick children.”