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ARTICLE |
a Medical Surgical Intensive Care Unit, Children's Hospital Boston, Boston, Massachusetts
b Chaplaincy
c Pastoral Care, Beverly Hospital, Beverly, Massachusetts
d Division of Critical Care Medicine and Department of Psychiatry, Harvard Medical School, Boston, Massachusetts
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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METHODS. A qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires was conducted at 3 PICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after the withdrawal of life-sustaining therapies participated.
RESULTS. Overall, spiritual/religious themes were included in the responses of 73% (41 of 56) of parents to questions about what had been most helpful to them and what advice they would offer to others at the end of life. Four explicitly spiritual/religious themes emerged: prayer, faith, access to and care from clergy, and belief in the transcendent quality of the parent-child relationship that endures beyond death. Parents also identified several implicitly spiritual/religious themes, including insight and wisdom; reliance on values; and virtues such as hope, trust, and love.
CONCLUSIONS. Many parents drew on and relied on their spirituality to guide them in end-of-life decision-making, to make meaning of the loss, and to sustain them emotionally. Despite the dominance of technology and medical discourse in the ICU, many parents experienced their child's end of life as a spiritual journey. Staff members, hospital chaplains, and community clergy are encouraged to be explicit in their hospitality to parents' spirituality and religious faith, to foster a culture of acceptance and integration of spiritual perspectives, and to work collaboratively to deliver spiritual care.
Key Words: spirituality • religion • end of life • parent • PICU • pediatric palliative care
The vast majority of the US population considers itself to be spiritual or religious, with 9 of 10 people believing in God or a higher power.1,2 Among adults who face illness, this percentage increases to 95% who believe in God.3,4 Patients and family members acknowledge their spirituality and religion as important in the face of illness and death, providing guidance with end-of-life decision-making, ascribing meaning to the loss, and offering emotional sustenance.2,5–8 Parental religious and spiritual perspectives and resources can affect and influence parents' understanding of and approach to illness, disability, and end-of-life decision-making.5,9–12 These findings are in keeping with the mounting evidence that patients and family members desire greater inquiry and integration of their spirituality from their health care practitioners, especially in times of grave illness.3,7,13–15 Despite the dominance of technology and medical discourse in the pediatric intensive care setting, the end of a child's life and its aftermath can be experienced for many parents as a spiritual journey.12
The American Academy of Pediatrics recognizes the significance of spirituality as an integral aspect of good pediatric palliative care and views spiritual advisors as essential members of the pediatric palliative care team.16 In addition, the current Joint Commission on Accreditation of Healthcare Organizations standards mandate the assessment of spiritual needs of the family of every child who receives end-of-life care and the availability of spiritual care providers to address these needs.17 Some have questioned whether staff members are adequately prepared, willing, or able to discuss and incorporate spirituality into everyday clinical practice in the PICU.18
Contemporary medical literature does not provide consensus on definitions of religion and spirituality.19 Religion may be considered a group's enculturation of an organized system of beliefs, texts, roles, and practices related to spirituality. Spirituality may be considered a personal search for meaning and purpose, and a trusting relationship to something that is greater than oneself and that is significantly meaningful. Spirituality is useful in the medical setting for its lens on identifying the variety of people and things that serve an individual as trustworthy and significantly meaningful spiritual resources.20 This perspective allows care providers to help parents identify their own unique spiritual resources and then to support parents in drawing on them appropriately in times of crisis. Regardless of religious tradition, many parents draw on additional resources that may have spiritual meaning to them, such as family, friends, ethnicity, country, ideals, nature, the community of others who are suffering, and, in some cases, the health care team.
Studies that examined the spiritual beliefs and the needs of parents whose children are hospitalized and dying have concluded that the amount and the quality of spiritual care that is available to parents is insufficient.2,11,21–23 A recent study reported that 60% to 80% of parents of hospitalized children had unmet spiritual needs.2 The death of a child can precipitate intense spiritual distress among parents24,25 and has been associated with increased risk for psychiatric illness and even mortality for parents.25–27 This underscores the need to understand better the parents' spiritual experience of their child's death and to provide improved spiritual care. Provision of spiritual care is an important yet often overlooked aspect of holistic care, with roles for spiritual care generalists and specialists.5,13,14,28,29
Our previous work9,30 demonstrated that faith is important and helpful to many parents who face the death of a child, in addition to honest information, ready access to staff, communication and care coordination, emotional expression and support by staff, and preservation of the integrity of the parent-child relationship. Parents reported that their spiritual/religious beliefs often were important to their coping efforts during their child's hospitalization and remained so after death. In addition, nearly one third of parents rated spiritual/religious beliefs as very important in the process of end-of-life decision-making. Parents identified community religious figures as vital and particularly available members of their social support network, serving parents in diverse and helpful ways during and after the child's death.
The purpose of this study was to examine the nature and the role of spirituality and religion at the end of life from the parents' perspective. The data were derived from open-ended, qualitative questions as part of a larger study that examined parental decision-making, social support, and priorities and recommendations for care at the end of life.9,30 Here, we present parents' own words to understand better their needs, priorities, and suggestions related specifically to spirituality at the end of life and to discern useful clinical implications.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Participants
Parents whose children had died in the ICU after the foregoing of life-sustaining treatment were eligible to participate. The deceased children ranged in age from newborn to 18 years and represented the full range of pediatric medical and surgical diagnoses. Parents completed the questionnaires 12 to 45 months after their child's death.
Questionnaire and Data Collection
The Parental Perspectives Questionnaire9 was designed to elicit parental ratings about the end-of-life care and experience, adequacy of pain management, decision-making, and social support. In addition to Likert-style quantitative items, the survey included 5 open-ended questions that were the focus of the current qualitative analysis:
Although the questions did not ask explicitly about spirituality or religion, parents spontaneously offered spiritual/religious responses, suggesting the importance of these issues.30 Here, we analyze and present in greater detail data about the nature and the role of parents' spirituality at the end of life in the PICU, including data about the advice that parents would offer to other parents under such circumstances.
Data Analysis
Parents' written responses to the open-ended questions on the Parental Perspectives Questionnaire were read and the content was analyzed by the first 2 authors (M.R.R. and M.M.T.), who served as the primary coders and whose training is in pastoral care. Content analysis31–34 was conducted through a process of reading and marking key words and phrases to identify topics and issues of importance to parents. The primary coders independently read and coded the responses; then, in face-to-face discussions, the spiritual and religious responses were grouped into themes and labeled accordingly. Agreement about thematic content and labeling occurred when the primary coders reached consensus through a process of rereading and discussion. Interrater agreement was acceptable at 83% between the primary coders and the secondary coder (M.M.B.). The overall frequency and the percentage of spiritual/religious responses were calculated on the basis of parental responses across all of the qualitative questions. Similarly, the frequencies and the percentages of both the explicitly and implicitly spiritual/religious responses were calculated and reported on the basis of responses across all of the qualitative questions.
Research Ethics
The institutional review boards of the 3 participating hospitals approved the study design and Parental Perspectives Questionnaire. A cover letter and consent form accompanied each questionnaire to explain the purpose of the study, directions, and study methods designed to ensure confidentiality. Parents were instructed to read the informed consent and, if they wished to participate, to check a box indicating so on the questionnaire. Information that could identify the patient, parent, or institution was not solicited.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Overall, 73% (41 of 56) of parents offered spiritual/religious responses when asked what had been most helpful to them and what advice they would offer others at the end of life in at least 1 of the 5 open-ended questions on the survey. Sixty-one percent (34 of 56) of parents provided explicitly spiritual/religious responses, and 46% (26 of 56) provided responses that were implicitly spiritual in nature. The questions that yielded the most spiritual/religious responses were, "What was most helpful to you in getting through the time at the end of your child's life?" and, "What advice do you have for other parents who are facing a similar situation?" In general, responses that were intended for other parents were more spiritual/religious and personal in nature than those that were directed toward health care providers, with language that was more conversational and emotionally laden.
Explicitly Spiritual/Religious Themes
Four explicitly spiritual/religious themes emerged: prayer, faith, access to and care from clergy, and belief in the transcendent quality of the parent-child relationship that endures beyond death. Representative quotations of each of these themes are presented below:
Prayer
When asked what was most helpful when coping during their child's final days, and what advice they might offer to other parents, several parents indicated prayer:
"We...prayed a tremendous amount."
"Pray for strength."
"Be strong and pray."
"Pray and don't be afraid to ask the staff questions."
"Pray!"
Faith
Many parents identified their faith in God when asked what was most helpful to them at the end of their child's life and what they would suggest to other parents who were facing similar situations:
"My faith and knowing that my child had the same faith."
"My faith and trust in God who was in charge of Jessie. Knowing she would not suffer no more when she went home to be with the Lord."
"The people God provided for us along the journey, friends, family, doctors, nurses, clergy."
"Put your faith in God."
"Trust in God."
A notable exception was 1 mother who listed faith as least helpful to her during the end-of-life experience:
"Just when I needed my faith, I hated it, for deceiving both my child and myself!"
Access to and Care From Clergy
Several parents identified the importance of ready access to both their own familiar community clergy person and the hospital chaplain:
"The services of my rabbi [were most helpful]."
"Allowing our minister...to have access to us."
"...a discussion with our pastor confirming we had the scriptural authority to make these decisions [withdrawal of life-sustaining therapies] was very helpful."
One parent specifically noted the pivotal role of health care team members in identifying when spiritual care might be beneficial:
"The nurse was extremely helpful...making suggestions for a chaplain."
Belief in the Transcendent Quality of the Parent-Child Relationship That Endures Beyond Death
Some parents offered heartfelt, emotionally charged advice to other parents, emphasizing the undeniable love and transcendent nature of the parent-child relationship that never dies but rather continues beyond death:
"Keep talking to your child—let your child know that you are OK. That it is OK for them to go on. I held my daughter and never stopped talking to her, reassuring her. It helped me to tell her that she would always be with me, so strong in my heart."
"To know that [you] will never forget your child."
"Just remember that they lived a good life and you did everything possible for your children and also believe they are in no pain anymore and that their [sic] up in heaven happy and always watching over you like you watched over them and never forget how special they were."
Implicitly Spiritual Themes: Wisdom, Values, Hope, Trust, and Love
Nearly half (46% [26 of 56]) of the parents in our sample identified implicitly spiritual resources that they had found helpful and offered as advice to other parents. These included wisdom borne of their experience; guidance according to one's own values; and virtues such as hope, trust, and love. These implicitly spiritual themes most often emerged in the context of advice to other bereaved parents. Wisdom that parents shared with others included the following:
"Listen, learn, accept, and let time do its job."
"Prepare yourself in advance if, as was the case in our situation, you know someday it is going to happen... . Finally, don't second guess the decision; think about it but to doubt yourself later on would eat you up."
"There will always be a void, but the pain eases."
"Don't blame yourself for things that were clearly out of your control. Believe [you] were terrific parents."
"...[W]e must accept what will be. There is no answer to why this is happening. It is unfair and unjust and will never go away. We cannot change the situation no matter how hard we love or try."
Several parents advised others to honor and be guided by their own values as a way to approach difficult end-of-life decision-making:
"Based on your own values and decisions, make the best choice you can."
"Do what you feel is emotionally right for you, your family, and your child."
"Know when to say enough is enough."
"Ask yourself, would I want my child to have a poor quality of life if he/she survives?"
Some parents emphasized the value of drawing on traditional spiritual virtues, such as hope, trust, and love, to survive emotionally and to discover meaning in the child's death:
"Hope is essential, don't give it up. Even now, I realize that was so important."
"Never give up hope."
"Trust that the best people are doing the best they possibly can for your child."
"Put your faith in God and your trust in the skilled doctors and nurses at the hospital who are caring for your child."
"There are only 3 things that are everlasting—faith, hope, and love. Love being the most important."
"Tell your child you love them, no matter what."
"I've learned a lot about the depth that some people are able to love or at least show love."
Finally, some parents refrained from offering specific advice to other parents, spiritual or otherwise, some noting that each person's situation was "too personal and subjective."
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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One of the most striking patterns of our data was that parents wrote much more freely about spiritual/religious beliefs and themes when they offered advice to other parents than to clinicians. Parents were more willing to share their spiritual and religious perspectives with other parents as evidenced by the frequency of spiritual/religious content, conversational tone, and emotion of their questionnaire responses. This suggests that although many parents experience the death of their child in spiritual ways, they may be reluctant to share this perspective with health care providers for any number of reasons, including the fear that their spirituality may be misunderstood or judged.13 Perhaps parents fear that their spiritual perspective might detract from the medical care of their child or that their views might be marginalized in the largely secular, scientific medical culture of the hospital.
Explicitly Spiritual/Religious Themes
Prayer
Consistent with previous findings,12 prayer was reported as helpful to a number of parents and was a practice that several recommended to other parents. Our data suggest that parents turned to prayer in times of medical crisis when medical care alone could not alleviate suffering or provide all of the answers.14,29 We cannot be certain what the parents meant specifically by prayer because they tended to write merely, "I prayed a lot," rather than elaborate. However, many diverse practices of prayer commonly are reported in health care settings (Table 1). 5,39 Prayer practices in the hospital setting can vary widely according to the number and the type of participants, location, physical posture, degree of formality, intent, sound, movement, devotional materials, and use of text. Given the number of parents in the sample who reported prayer as central to their coping efforts, creating an environment that is hospitable to and supportive of prayer is suggested. The clinician who is familiar with diverse practices of prayer will be better able to recognize the variety of devotional materials that parents bring to the bedside. The hospital can accommodate parental prayer practices by providing a multifaith chapel that has flexible space and a variety of devotional materials, is open at all times, and is convenient to the ICUs.
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Access to and Care From Clergy
Although the death of a child is commonly understood in medical and biological terms, our data support the previous findings of Kirschbaum12 that the death can also represent a spiritual struggle for parents, a crisis of meaning and connection. Several parents noted that the most helpful thing that staff did was to recognize their spiritual needs and to give access to and make welcome both community clergy and hospital chaplains on their behalf. One mother, for example, wrote about the pivotal role of her pastor in clarifying that the family had the scriptural authority to move forward with a decision involving withdrawal of life support. Had that conversation and follow-up collaborative work with the chaplain not been available, this particular parent may not have been able to participate fully or with good conscience in the end-of-life decision-making process.
Accordingly, providers do well to inquire about whether parents are part of a faith community and whether they would wish to invite their clergyperson to the hospital. Families are often unfamiliar with the hospital chaplain's role and availability and rely on clinical staff to introduce and offer such a resource.41 In our data were examples of parents who had found comfort in their faith after the death of a child, of others who had come to a new spiritual understanding and meaning in life,5,35 and of 1 mother who experienced profound spiritual distress and disconnection from her former faith.20 Having access to a clergyperson with whom these issues can be explored is recommended as an important part of good holistic care.
Ideally, hospital-based chaplains and community clergy can partner in the spiritual care of families in crisis. Community clergy provide continuity of spiritual care for families—before, during, and after hospitalization—and are well grounded in the spiritual resources of their specific religious tradition. Community clergy, however, may not be familiar with the level of spiritual crisis or the magnitude of suffering that the death of a child can unleash for grieving parents. Hospital chaplains, in contrast, have special training and certification to work with people in spiritual distress across a range of faith traditions, as well as with people of no religious faith. Typically, hospital chaplains do not have the same long-term relationships with families that community clergy do, although families of children with chronic illness can be an exception to this generalization. The complementary roles of community clergy and hospital chaplains are summarized in Table 2.
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In some religious traditions, parenthood is understood to be stewardship of a child's life and a gift from God. Accordingly, God entrusts a child to a parent, and the parent then is responsible to God for the best care possible for that child. From this perspective, care providers might conceptualize parents as people who are trying their utmost to protect a life that has been entrusted divinely to their care. When disagreements and conflicts arise between parents and providers, admission of this spiritual perspective may allow for polarization to ease into greater partnership rather than conceptualizing parents as "difficult and controlling."48
Implicitly Spiritual Themes
Nearly half of parents offered implicitly spiritual/religious responses with insight gained from their own experience, including wisdom, perspective, and guidance. Parental wisdom focused on the unfairness and injustice of the child's death, how much it was out of parental control, and the insight gained during bereavement. One parent in our sample poignantly described an inability to find meaning in the child's death and reformulated it as a mystery that could not be solved but must be accepted. Our clinical experience suggests that parents often wonder, "Is there some greater good (eg, research, organ donation, inspiration to others) in relation to which my child's death becomes acceptable?" "What was the reason for my child's death?" "Was it bad luck, or was it part of a bigger plan?" "Was my child's death a failure of some kind on my part to protect him or her adequately?" Even defining meaning in negative ways, as in "unfair" or "unjust," is to imply spiritual or existential expectations of justice.
Our data suggest that the meaning of a child's death for a parent is not viewed objectively but rather subjectively and constructed over time, typically out of difficult soul-searching.44,49 In our sample, parents spontaneously offered wisdom, highlighting the importance of making meaning when faced with this type of loss. Meanings varied considerably. Families may benefit from access to caregivers who can listen and support them through their individualized search for meaning, which may take months to years.14 One bereaved parent in our sample reported distress when a doctor imposed his own meaning on their child's death, "As we stood by our child's crib in her final hour [the doctor told us that] ‘It was just bad luck.’" Accordingly, one-size-fits-all wisdom is to be avoided by clinicians and chaplains alike.
Parents also emphasized the importance of doing what is right for one's child and family. For at least 1 parent in our sample, this included adherence to a particular religious process of confirming scriptural authority for any proposed decision, particularly withdrawal of life support. For another parent, it was defining one's own values regarding quality of life and setting a threshold for "when enough is enough." Being able to honor and follow one's values in medical decision-making may be considered spiritual for parents who try to live congruently with their sense of ultimate meaning. Whether the values are secular or religious, to the degree that they serve as an inner compass, they define a person's sense of meaning, obligations, and purpose in life.
Hope and trust were common themes in parents' comments. The parents in our sample did not specify the content of their hope but did emphasize its importance. Although what may be hoped for may change over the trajectory of a child's illness, the dynamic of hoping can remain in place to sustain a family's coping.50–52 For example, early in hospitalization, parents may hope for a cure or "a miracle," but when it becomes clear that the child will not survive, parental hope may expand to include comfort and dignity at life's end.53 Whether hope is expressed in religious or secular language, both hope and trust are forward-looking and may be considered spiritual. Hope and trust rest in the conviction that a larger trustworthy reality is present in the ongoing experience and may even transform the future in deeply meaningful ways.12,54 Because hope motivates, it can serve as a creative and sustaining dynamic during long hospitalization and end-of-life care. Care providers may benefit families by helping members to identify for what they are hoping at any given point. Chaplains can help the team to understand better the parents' hopes, nurture realistic hopes, and "lift up" current hopes in prayer with the family.
Similarly, trust can help as a spiritual dynamic to sustain parents through the child's death and its aftermath. As noted earlier, several parents in our sample placed their trust in God, but trust can also be placed in secular resources. For example, 1 parent advised both by suggesting, "Have faith in God but also in the skilled doctors and nurses at the hospital who are caring for your child." Another parent viewed the care team as inherently trustworthy because God had provided them. Still another viewed the care team as trustworthy because of their medical and nursing excellence. This illustrates that the health care team itself can be perceived as a spiritual resource by some parents, the trustworthiness of which is highly valued.
Our findings suggest an abundance of love and compassion at the end of life in the PICU, embedded in a variety of relationships: parent-child, sibling-patient, friends-parent, staff-patient, and staff-parent. One parent reported that of all virtues, love was "most important and everlasting." Another parent commented that "the depth of love" in the PICU was most helpful at the end of the child's life. Religious traditions commonly identify love as one of the central aspects of spiritual experience. Among Christians, for example, love is understood to be a manifestation of God and therefore transcendent.55 Our previous work9,30 and that of others56–59 have documented that parents value emotional expression, compassionate presence, and kindness from their child's health care team members. Beyond professional competence, parents want to know that their situation is seen as unique, compelling, and worthy of the caregivers' compassion.11,60 The variety of compassionate caregivers cited in our sample was remarkable. Some parents identified the value of "the doctors and nurses who were right with us," another noted, "the man who cleaned up the mess everyone made was probably the most helpful of all," and yet another parent stated that "everyone cared for our son as if he were their own." Our findings are consistent with previous research suggesting that when care team members offer appropriate gestures of kindness and compassion and show their own humanness, families often feel supported spiritually and find it easier to access sources of hope, trust, relationship, and meaning.13,14,28,59–62 Moreover, caring emotional attitudes that are displayed by pediatric intensive care clinicians have been associated with beneficial short- and long-term effects on parental bereavement.58
Clinical Implications
Our data lend additional support to studies that have documented the immediacy and the abundance of parental spiritual needs in the PICU.11,30,51 The American Academy of Pediatrics16 and the Institute of Medicine,63 in their groundbreaking book When Children Die, emphasize the clinical and ethical imperatives of incorporating spiritual needs assessment and care at the end of life. The Joint Commission on Accreditation of Healthcare Organizations mandates that a patient's spiritual needs be both assessed and accommodated.
Clinically, we find it useful to apply both a generalist and a specialist approach to the provision of spiritual care.28 Clinicians can aim to be spiritual generalists and medical specialists, whereas chaplains can aim to be spiritual specialists and medical generalists. For example, doctors and nurses can assess the broad spiritual concerns of patients and families to refer them to appropriate spiritual advisors, whereas chaplains must take into account the medical issues, plan of care, and prognosis to understand the context from which spiritual needs emerge and to anticipate impending spiritual crises. Ideally, both clinicians and chaplains are nonjudgmental and open to diversity of spiritual beliefs. In all cases, they should refrain from proselytizing. Whenever possible, PICUs should include professionally certified chaplains as integrated members of care teams.64 Collegial, collaborative working relationships and interdisciplinary team care coordination are essential.30,64 Table 3 summarizes and distinguishes the roles and tasks of spiritual care generalists and specialists, and Table 4 offers suggested sample assessment questions for each.
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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ACKNOWLEDGMENTS |
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We are grateful to the parents who participated in the study for their time, effort, valuable insights, and advice. We are grateful to Jeffrey P. Burns, MD, MPH, and Robert D. Truog, MD, for support and clinical wisdom throughout the process of this work. We thank David Browning, MSW, BCD, Barbara Burr, MD, Ronald Lacro, MD, Marilyn Ritholz, PhD, Lisa Pixley, RN, Deborah Sellers, PhD, and David Urion, MD, for insights and suggestions on an earlier draft of the manuscript.
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FOOTNOTES |
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Address correspondence to Elaine C. Meyer, PhD, RN, Medical Surgical Intensive Care Unit, Farley #517, Children's Hospital, 300 Longwood Ave, Boston, MA 02115. E-mail: elaine.meyer{at}childrens.harvard.edu
The authors have indicated they have no financial relationships relevant to this article to disclose.
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