A Piece of My Mind Section Editor: Roxanne K. Young, Associate Senior Editor.
Author Affiliations: Division of Neonatology, Department of Pediatrics (Dr Milstein) (email@example.com); Departments of Internal Medicine and Sociology and Center for Healthcare Policy and Research (Dr Paterniti), University of California, Davis; and Renaissance Society, Sacramento, California (Mr and Mrs Kovar).
In a recent talk on spirituality in medicine, I (J.M.M.) described an infant (Baby Rose) with trisomy 18, a myelomeningocele, and hydrocephaly. This infant girl had closure of the back defect as well as shunt placement within the first week of life, and then was sent home with her family. She experienced compassionate, loving care in that setting throughout the duration of her life of 19 days. During my presentation, I shared video recordings Rose's family had created, demonstrating the love that permeated their home.
I had barely completed this portion of my presentation when a visibly upset couple left the amphitheater. That afternoon they sent me an apologetic e-mail. Their firstborn infant with spina bifida had not been treated in such a loving fashion as Rose. When they heard the name of Rose's mother, Deborah, they lost their composure. Deborah was the name chosen for their daughter. The similarities, in both name and defect, prompted memories that were surprisingly raw even though 57 years had elapsed since Deborah's birth. She had survived to the age of 9 months in an institution.
Len and Lorraine's account touched me, as I sensed the pain that surfaced for them. Over the following year, this family and I developed a relationship. My communications with Len and Lorraine allowed me to envision this loving young couple as they embarked on establishing Len's first church in Hardin, Montana, after seminary in 1952. Lorraine was glowing as she was about to give birth to their firstborn, starting their family and new life.
A much-dreaded experience befell them on October 13, 1952, when physicians in Billings discovered that Deborah had a life-altering condition at birth: spina bifida. Their baby was not all right, and they could not take her home.
Subsequently, conflicting and confusing expectations and discordant values coming from social expectations, from medical authority, and from within challenged Len and Lorraine. In 1952, the expectations and values imposed by social standards and framed through the advice of both nurses and physicians—“You cannot care for this infant.” “Do not bond.” “Pass her on to an institution for care. You cannot do it.” and insisting that Lorraine should “Stop that crying” whenever she was seen expressing emotion—were in marked contrast to those deafening proclamations coming from Deborah's parents: This is our daughter. How can we not care for her and love her? Our very souls have been as one with hers from the moment ofintention, to conception, to birth, to death and beyond.
Just prior to Lorraine's discharge home, a nurse offered another conflicting message: “You mean you're not taking her home?” On one hand, the nurse's question may have reflected some insensitivity based on prior directives given to the family by medical professionals. Alternatively, the question may have reflected a glimmer of compassion.
In a narrative Lorraine shared with me, she wrote, “I went home with empty arms and attempted to resume life again. I felt I needed to have a stiff upper lip and demonstrate to everyone how strong I was. How WRONG I was! I never allowed others to help me with my sorrow.”
Len is a man of stature and conviction and, based on his service to our country, a hero by anyone's standards. He was expected to be stoic for his congregants even though he, like Lorraine, was suffering. Societal and occupational norms, particularly the expectation of stoicism imposed on clergy, weighed on Len, and as with Lorraine, his grief related to his connection with his daughter became suppressed. Had societal expectations been different, Len and Lorraine could have shared their feelings with the church. Such sharing could have been very powerful.
Both Len and Lorraine put their emotions, along with their memories of Deborah, aside and moved on with their lives. Superficially, Len and Lorraine accomplished the four tasks of mourning described by Worden.1 They accepted the reality of the loss, expressed the pain of grief, adjusted to life without the deceased, and withdrew emotional energy from the deceased and reinvested it in other relationships, later having three healthy children. The first was born almost a year after Deborah on October 12, 1953. Yet 57 years later, Len and Lorraine's grief could still be reopened.
Worden and those who have studied the grieving process have revised their understanding of the fourth task. Rather than withdraw emotional energy from the deceased, Worden concluded that it is important to find a place for the deceased that will enable the mourner to be connected with the deceased in a way that will allow the mourner to go on with life.1 The grief that surfaced during my first encounter with Len and Lorraine suggested that they had not had the opportunity to fully reconcile their grief and loss.
In the 1940s to 1950s, the standard of care was to delay closure of a spina bifida until the child was 18 months old, allowing time to assess eventual neurological outcome and only proceeding with closure of the back defect if the neurologic outcome was not likely to be too severe to be compatible with sustainable/normal life, and if IQ were likely to be close to normal.2 Care was primarily provided in institutions, where hydrocephalus and infection were the most common causes of death.2 Mortality due to hydrocephalus decreased in the late 1950s with the introduction of shunts.2 During the 1960s, earlier closure was performed within the first week of life to avoid complications, particularly those due to infection.2 Other advances in relation to infection from neurogenic bladder were associated with broad-spectrum antibiotics and clean intermittent catheterization in the 1970s.2 More recently, a randomized controlled trial of standard closure vs in utero closure demonstrated promising outcomes for early closure.3
Although care provided in the 1960s might be considered more humanistic, we, as a society and part of the medical establishment, remained uncomfortable dealing with human emotions in such cases. Role modeling in relation to communicating difficult information in the settings of disability and uncertainty that is so prevalent in medical training today was nonexistent. Even clinical pastoral education had not surfaced in any programs until the mid to late1960s. In 1969, Len formally added pastoral counseling to his armamentarium. That year the Joint Commission for the Accreditation of Healthcare Organizations addressed religion and spirituality in its guidelines, framing religious/spiritual care of patients as a right in the 1990s.4 In 1975, society was advancing when Congress passed the Education Of All Handicapped Children Act in order to assure free public education to all children with disabilities.5 Then in the 1980s, human rights issues led to public outcry with the appearance of Baby Doe cases and regulations regarding the medical care provided to disabled infants.6 The power of medicine in defining socially appropriate behavior was fraught with a certain degree of “man's inhumanity to man.” This may have reflected a sense of fear, uncertainty, ignorance, and discomfort with disability that made supportive and compassionate professionalism both within medicine and the larger society the exception rather than the rule. Therefore, some medical professionals too often ignored the impact of connection (and the grief of its loss) on patients and families.
While Len and Lorraine thought that they had moved on from their loss, when they exited my talk, it was as though Deborah had just died. They were not assisted in dealing with their human experience—their connection with their daughter—on cognitive, emotional, or spiritual levels, the foundations to healing.7,8
In our discussions, Len and I explored how we can accomplish such healing and attain a sense of wholeness. Healing actively addresses the cognitive, emotional, and spiritual elements of the human experience. Healing can be accomplished on an individual basis when a caregiver attains a mind-set of “being with” rather than “doing to” the patient or another. The caregiver on a tangible plane principally addresses the cognitive and emotional elements by guiding the patient or significant other through his or her thoughts and feelings regarding the loss. Addressing the spiritual element is more complex. It may require transcendence of an individual's physical, cognitive, and emotional sense of reality and the individual's material or tangible world.8 After all, the existential questions such as “Why me?” or “What does this experience mean?” in pursuit of sense making do not have conventional answers. On this plane, the sense of wholeness may be more a state of being as opposed to a clearly tangible state. The guidance into this state may help an individual (or family) connect with significant others and, most importantly, for the bereaved to connect at a deeper level with the deceased. For medical professionals, this charge is both nebulous and indefinable, yet it may comprise that place for the deceased, a place sought by the bereaved to maintain a connection, resonating with Worden's fourth task of mourning, leading the bereaved to wholeness.
On a spiritual level, the parental connection with their unborn, newborn, or deceased infant from intention, to conception, to birth, to death, and beyond may be a sustainable phenomenon on both subconscious and conscious levels. Such connections may endure long after physical, cognitive, and emotional memories fade.
Since the medical establishment and society had not yet adapted family-centered, community-based, shared decision–based care, institutional care of infants like Deborah was commonplace. That care, including shunt placement that was initially to control the degree of macrocephaly, was primarily custodial. Over the subsequent 50 to 60 years, care became more humanistic, partly in response to contemporary issues of social welfare as well as changes in social consciousness. As it evolved, care became more compassionate, optimizing outcomes for infants, such as Deborah, and their families. Parallel medical advances have also been impressive, culminating in the most recent type of fetal intervention, fetal neurosurgery.3 These interventions may open the door to approach other congenital central nervous system disorders potentially amenable to fetal neurosurgical techniques. Perpetually having medicine and society reevaluate their approach to other challenging conditions may translate to comparable advances in other areas as well. We should continue to be reflective, raising our understanding and awareness, regarding the interactions between medicine and society.
Acknowledgment: We would like to acknowledge Larry I. Corman, MD, and Deborah Maciejewski for manuscript review and encouragement and Deborah Joy Kovar (October 13, 1952–July 17, 1953) for her important ongoing impact on us.
Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. None were reported.
Milstein JM, Kovar LB, Kovar LJ, Paterniti DA. A Path to Wholeness. JAMA. 2012;308(10):985-986. doi:10.1001/2012.jama.10425