Professional Documents
Culture Documents
a
Medical Surgical Intensive Care Unit, Childrens Hospital Boston, Boston, Massachusetts; Departments of bChaplaincy and cPastoral Care, Beverly Hospital, Beverly,
Massachusetts; dDivision of Critical Care Medicine and Department of Psychiatry, Harvard Medical School, Boston, Massachusetts
The authors have indicated they have no nancial relationships relevant to this article to disclose.
ABSTRACT
OBJECTIVE. Our objective with this study was to identify the nature and the role of
spirituality from the parents perspective at the end of life in the PICU and to
www.pediatrics.org/cgi/doi/10.1542/
discern clinical implications. peds.2005-2298
METHODS. A qualitative study based on parental responses to open-ended questions doi:10.1542/peds.2005-2298
on anonymous, self-administered questionnaires was conducted at 3 PICUs in Key Words
spirituality, religion, end of life, parent,
Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after PICU, pediatric palliative care
the withdrawal of life-sustaining therapies participated. Accepted for publication Mar 20, 2005
Address correspondence to Elaine C. Meyer,
RESULTS. Overall, spiritual/religious themes were included in the responses of 73%
PhD, RN, Medical Surgical Intensive Care Unit,
(41 of 56) of parents to questions about what had been most helpful to them and Farley #517, Childrens Hospital, 300
Longwood Ave, Boston, MA 02115. E-mail:
what advice they would offer to others at the end of life. Four explicitly spiritual/ elaine.meyer@childrens.harvard.edu
religious themes emerged: prayer, faith, access to and care from clergy, and belief PEDIATRICS (ISSN Numbers: Print, 0031-4005;
in the transcendent quality of the parent-child relationship that endures beyond Online, 1098-4275). Copyright 2006 by the
American Academy of Pediatrics
death. Parents also identified several implicitly spiritual/religious themes, includ-
ing 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 childs 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.
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newborn to 18 years and represented the full range of itly and implicitly spiritual/religious responses were cal-
pediatric medical and surgical diagnoses. Parents com- culated and reported on the basis of responses across all
pleted the questionnaires 12 to 45 months after their of the qualitative questions.
childs death.
Research Ethics
Questionnaire and Data Collection The institutional review boards of the 3 participating
The Parental Perspectives Questionnaire9 was designed hospitals approved the study design and Parental Per-
to elicit parental ratings about the end-of-life care and spectives Questionnaire. A cover letter and consent form
experience, adequacy of pain management, decision- accompanied each questionnaire to explain the purpose
making, and social support. In addition to Likert-style of the study, directions, and study methods designed to
quantitative items, the survey included 5 open-ended ensure confidentiality. Parents were instructed to read
questions that were the focus of the current qualitative the informed consent and, if they wished to participate,
analysis: to check a box indicating so on the questionnaire. Infor-
mation that could identify the patient, parent, or insti-
What was most helpful to you in getting through the tution was not solicited.
time at the end of your childs life?
What was least helpful to you in getting through the RESULTS
time at the end of your childs life? Of 96 eligible households, we analyzed 56 (58%) ques-
How can the hospital staff improve their communica- tionnaires from 56 parents of 56 different children, in-
tion with parents at this difficult time? cluding 36 (64%) mothers and 20 (36%) fathers. The
mean age of parents who responded was 42.3 years
What advice do you have for hospital staff members in
(8.4), and 75% were married. Ninety-one percent of
helping parents during this difficult time?
the sample was white. Regarding religious affiliation,
What advice do you have for other parents who are 50% identified themselves as Catholic, 34% as Protes-
facing a similar situation? tant, 5% as Jewish, and 2% as Muslim, and 9% indi-
Although the questions did not ask explicitly about cated no religious affiliation.
spirituality or religion, parents spontaneously offered Overall, 73% (41 of 56) of parents offered spiritual/
spiritual/religious responses, suggesting the importance religious responses when asked what had been most
of these issues.30 Here, we analyze and present in greater helpful to them and what advice they would offer others
detail data about the nature and the role of parents at the end of life in at least 1 of the 5 open-ended
spirituality at the end of life in the PICU, including data questions on the survey. Sixty-one percent (34 of 56) of
about the advice that parents would offer to other par- parents provided explicitly spiritual/religious responses,
ents under such circumstances. and 46% (26 of 56) provided responses that were im-
plicitly spiritual in nature. The questions that yielded the
most spiritual/religious responses were, What was most
Data Analysis
helpful to you in getting through the time at the end of
Parents written responses to the open-ended questions
your childs life? and, What advice do you have for
on the Parental Perspectives Questionnaire were read
other parents who are facing a similar situation? In
and the content was analyzed by the first 2 authors
general, responses that were intended for other parents
(M.R.R. and M.M.T.), who served as the primary coders
were more spiritual/religious and personal in nature
and whose training is in pastoral care. Content analy-
than those that were directed toward health care pro-
sis3134 was conducted through a process of reading and
viders, with language that was more conversational and
marking key words and phrases to identify topics and
emotionally laden.
issues of importance to parents. The primary coders in-
dependently read and coded the responses; then, in face-
to-face discussions, the spiritual and religious responses Explicitly Spiritual/Religious Themes
were grouped into themes and labeled accordingly. Four explicitly spiritual/religious themes emerged:
Agreement about thematic content and labeling oc- prayer, faith, access to and care from clergy, and belief in
curred when the primary coders reached consensus the transcendent quality of the parent-child relationship
through a process of rereading and discussion. Interrater that endures beyond death. Representative quotations of
agreement was acceptable at 83% between the primary each of these themes are presented below:
coders and the secondary coder (M.M.B.). The overall
frequency and the percentage of spiritual/religious re- Prayer
sponses were calculated on the basis of parental re- When asked what was most helpful when coping during
sponses across all of the qualitative questions. Similarly, their childs final days, and what advice they might offer
the frequencies and the percentages of both the explic- to other parents, several parents indicated prayer:
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Tell your child you love them, no matter what. spective with health care providers for any number of
Ive learned a lot about the depth that some people are reasons, including the fear that their spirituality may be
able to love or at least show love. misunderstood or judged.13 Perhaps parents fear that
their spiritual perspective might detract from the medical
Finally, some parents refrained from offering specific
care of their child or that their views might be margin-
advice to other parents, spiritual or otherwise, some
alized in the largely secular, scientific medical culture of
noting that each persons situation was too personal
the hospital.
and subjective.
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sized that the parent-child relationship had the capacity reported distress when a doctor imposed his own mean-
to transcend death. Consistent with earlier studies,11,4247 ing on their childs death, As we stood by our childs
several parents found meaning and comfort in the belief crib in her final hour [the doctor told us that] It was just
that although the parent-child relationship would bad luck. Accordingly, one-size-fits-all wisdom is to be
change after the death, it would not end abruptly but avoided by clinicians and chaplains alike.
rather would be transformed and extend beyond this Parents also emphasized the importance of doing
life. One parent visualized the child in heaven as a place what is right for ones child and family. For at least 1
without pain or suffering, another spoke of the legacy of parent in our sample, this included adherence to a par-
memories not forgotten, and still another spoke about ticular religious process of confirming scriptural author-
her child watching over them. One parent spoke of the ity for any proposed decision, particularly withdrawal of
childs continuing presence in her heart. How such be- life support. For another parent, it was defining ones
liefs might influence the way parents approach end-of- own values regarding quality of life and setting a thresh-
life decisions is unclear but worthy of additional study. old for when enough is enough. Being able to honor
In some religious traditions, parenthood is under- and follow ones values in medical decision-making may
stood to be stewardship of a childs life and a gift from be considered spiritual for parents who try to live con-
God. Accordingly, God entrusts a child to a parent, and gruently with their sense of ultimate meaning. Whether
the parent then is responsible to God for the best care the values are secular or religious, to the degree that
possible for that child. From this perspective, care pro- they serve as an inner compass, they define a persons
viders might conceptualize parents as people who are sense of meaning, obligations, and purpose in life.
trying their utmost to protect a life that has been en- Hope and trust were common themes in parents
trusted divinely to their care. When disagreements and comments. The parents in our sample did not specify the
conflicts arise between parents and providers, admission content of their hope but did emphasize its importance.
of this spiritual perspective may allow for polarization to Although what may be hoped for may change over the
ease into greater partnership rather than conceptualizing trajectory of a childs illness, the dynamic of hoping can
parents as difficult and controlling.48 remain in place to sustain a familys coping.5052 For
example, early in hospitalization, parents may hope for a
Implicitly Spiritual Themes cure or a miracle, but when it becomes clear that the
Nearly half of parents offered implicitly spiritual/reli- child will not survive, parental hope may expand to
gious responses with insight gained from their own ex- include comfort and dignity at lifes end.53 Whether hope
perience, including wisdom, perspective, and guidance. is expressed in religious or secular language, both hope
Parental wisdom focused on the unfairness and injustice and trust are forward-looking and may be considered
of the childs death, how much it was out of parental spiritual. Hope and trust rest in the conviction that a
control, and the insight gained during bereavement. One larger trustworthy reality is present in the ongoing ex-
parent in our sample poignantly described an inability to perience and may even transform the future in deeply
find meaning in the childs death and reformulated it as meaningful ways.12,54 Because hope motivates, it can
a mystery that could not be solved but must be accepted. serve as a creative and sustaining dynamic during long
Our clinical experience suggests that parents often won- hospitalization and end-of-life care. Care providers may
der, Is there some greater good (eg, research, organ benefit families by helping members to identify for what
donation, inspiration to others) in relation to which my they are hoping at any given point. Chaplains can help
childs death becomes acceptable? What was the rea- the team to understand better the parents hopes, nur-
son for my childs death? Was it bad luck, or was it part ture realistic hopes, and lift up current hopes in prayer
of a bigger plan? Was my childs death a failure of with the family.
some kind on my part to protect him or her adequately? Similarly, trust can help as a spiritual dynamic to
Even defining meaning in negative ways, as in unfair sustain parents through the childs death and its after-
or unjust, is to imply spiritual or existential expecta- math. As noted earlier, several parents in our sample
tions of justice. placed their trust in God, but trust can also be placed in
Our data suggest that the meaning of a childs death secular resources. For example, 1 parent advised both by
for a parent is not viewed objectively but rather subjec- suggesting, Have faith in God but also in the skilled
tively and constructed over time, typically out of difficult doctors and nurses at the hospital who are caring for
soul-searching.44,49 In our sample, parents spontaneously your child. Another parent viewed the care team as
offered wisdom, highlighting the importance of making inherently trustworthy because God had provided them.
meaning when faced with this type of loss. Meanings Still another viewed the care team as trustworthy be-
varied considerably. Families may benefit from access to cause of their medical and nursing excellence. This illus-
caregivers who can listen and support them through trates that the health care team itself can be perceived as
their individualized search for meaning, which may take a spiritual resource by some parents, the trustworthiness
months to years.14 One bereaved parent in our sample of which is highly valued.
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as integrated members of care teams.64 Collegial, collab- TABLE 5 When a Spiritual Generalist Should Consult A Chaplain
orative working relationships and interdisciplinary team A spiritual generalist should consult a chaplain when:
care coordination are essential.30,64 Table 3 summarizes Families desire spiritual support in a difcult time
and distinguishes the roles and tasks of spiritual care Someone requests prayer, sacraments, ritual, or devotional materials
generalists and specialists, and Table 4 offers suggested Patients or families wish to include a faith perspective(s) in their decision-
making
sample assessment questions for each.
Faith is a primary source of comfort, strength, and community for those in the
All team members, given training, experience, and staffs care
motivation, have the capacity to provide a generalists Staff notices signs of spiritual distress: Why is this happening to us? Why isnt
level of spiritual care, with its incumbent active hospi- God listening to my prayers? I feel like I am being punished.
tality to the familys spirituality.14,28 Many medical and A caregiver wishes more information about a faith tradition and its relevance
to medical care
nursing schools now offer educational opportunities for
The patient or the family voices religious or spiritual objections to the plan of
integrating spiritual issues responsibly into practice. care
Other options for training include specialized programs Families need special accommodations for spiritual or religious observance
that adapt basic chaplaincy training to other disciplines, Interfaith families need an interfaith team of spiritual caregivers
such as the Kenneth B. Schwartz Fellowships in Pastoral Staff observe religious solicitation in the hospital setting
Care.59,65 Of course, it is important that clinicians recog-
nize when to consult chaplaincy when the familys spir-
itual needs exceed their generalist level of expertise. spondents, because the questionnaires were adminis-
Table 5 offers guidance for clinicians regarding when tered anonymously to foster candor. The study included
they should seek such consultation. parents of children who represented a full range of ages
and disease processes and for whom the time since death
Limitations of the Study varied widely, precluding the ability to draw specific
Several limitations of the study must be acknowledged. conclusions about the spiritual aspects of particular kinds
The sample size was relatively small and consisted of of death trajectories, diagnoses, or the impact of time
predominantly white, English-speaking parents. Half of elapsed since death. Last, the study was subject to the
the parents identified themselves as Catholics, reflecting limitations that are inherent in all studies that depend on
local demographics, which may limit generalizability. self-report measures.
The response rate (58%) was at the low margin of the
acceptable range for such studies, and the individuals CONCLUSIONS
willingness to participate may reflect bias in their clinical Many parents in the PICU drew on and relied on their
experiences, views of end-of-life care, degree of emo- spirituality to guide them in end-of-life decision-making,
tional recovery, or ability to read and write their re- to make meaning of the loss, and to sustain them emo-
sponses to the questionnaires. The questions on the tionally. Parents reported 4 explicitly religious/spiritual
survey of parental perspectives on end of life did not themes: prayer, faith, access to and care from clergy, and
specifically ask about spirituality or religion; however, belief in the transcendent quality of the parent-child
parents spontaneously offered many spiritual/religious relationship that endures beyond death. In addition,
responses, suggesting the importance and the centrality parents identified several implicitly religious/spiritual
of these issues. It was not possible to determine whether themes: insight and wisdom; reliance on values; and
the respondents differed significantly from the nonre- spiritual virtues such as hope, trust, and love. Staff mem-
TABLE 4 Suggested Sample Assessment Questions for Spiritual Care Generalists and Specialists
Spiritual Care Generalists (Clinicians) Spiritual Care Specialists (Chaplains)
Do you consider yourself spiritual or religious? Where is God in all of this?
Do you have a religious preference or spiritual path? What aspects of your faith are giving you the most comfort and
strength right now?
What is giving you the strength, comfort, and hope How do your spiritual beliefs inuence how you view this
you need right now? illness right now?
Do you need any special accommodations for your Are there parts of your spiritual life that are troubling you right
spiritual or religious needs while you are in the now?
hospital? Dietary needs? Do you have a faith community, and would you want to
include them at any point?
Document information and refer to chaplain as I wonder whether there are ways that your faith affects the
appropriate. medical decisions that you are making these days.
How have your religious or spiritual practices changed over the
years?
Document information as appropriate.
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