Creating a Sacred Space

When a baby or child is dying, the very space becomes

a sacred space and following the death inspires
something to be done to “hold” that space in dignity
for a brief period of time to honor the fact that
something very profound happened.
When the call comes in that a baby or child has died in the home, it may be a challenge and even a bit overwhelming to think of
what you will do to be of help and comfort to the grieving family. Below are some guidelines that may help you approach the
situation a bit more prepared and thus more capable of making the process a little less painful for the parents and family.
1. Most parents may not directly ask for a home visit, but usually appreciate and oft en—benefi t from a visit at the time of the
child’s death. Just having someone there to help orchestrate the process when they may be feeling overwhelmed and
paralyzed by their grief will be helpful. If they refuse, then there are still things to do over the phone that will be helpful for
them. It is most likely that they will not need the nurse or other team members to stay for the entire time until the child is
taken from the home.
2. Th e family should be allowed to have as much time as they need with their baby or child before the mortuary comes to take
their child’s body. It may seem unusual to you that they would want to keep the body for many hours, but it is a very fi nal
step to have their child taken from the home. Th e mortuary can be notifi ed with the appropriate information required at
time of death but informed that the family will contact them directly when they are ready.
3. T ry to suggest to the parents/caregivers to take some private time alone with their child, without all the family around. Th is
is a very intimate and personal time for them and may help to facilitate the process of “letting go” and saying goodbye.
Others in the family may also wish to have some private time with the child to say a personal goodbye.
4. E ncourage the parents/adults present to give any other children in the home or family the choice to go in and say goodbye.
Children of most any age are able to decide for themselves if they want to see the child who has died. By just off ering the
child the choice, it has given the child a sense of control during an unfamiliar and unsettling experience. Th ey will remember
that someone thought enough of them and their relationship with the person who died to give them the chance to say
goodbye. Th e child should be prepared in simple language for what the child will look and feel like, that they will not move,
and so forth. It’s a good idea to remove any tubing from infusions, oxygen tubing, catheters, and so forth to normalize the
appearance at the bedside as much as possible. Someone he/she feels safe with should accompany the child. If the family
plans on cremation, this may be the last opportunity for them to see their sibling, thus there may not be a second chance if
not now. Th e child may wish to go in for just a “peek” or they may be curious and want to stay around. Whatever length of
time the child chooses to stay is okay and should be up to them.
5. Allow parents to have the time they need to perform any private rituals or activities, which may include bathing the little
one, redressing the child into something special, rocking, a blessing or time for prayer around the bedside. Th ey may wish to
have their priest, minister, or chaplain come to the home.
6. Off er the parents the suggestion of saving a lock of hair if they have not already done so. Th ey may not feel comfortable
doing this themselves and may wish for the staff person to do this. Th e nape of the neck or the back of the head is the best
places to obtain a swatch of hair. It can be tied with a piece of yarn, thread or ribbon. Th e hair can be placed in an envelope
and sealed. Explain that they may not wish to look at it or have it now but that some day they may be glad they had this
small remembrance, something tangible that connects them to their loved one, their precious child. A comfortable way to
present these suggestions to the family is to say that these are some ideas and suggestions that other parents/families have
found to be comforting. Th ey may choose to do all or none of these activities, the point is to make it meaningful for
themselves as a family.
7. Th ere are instances when the family may want to take pictures of the child aft er death. Th ey may wish to keep them for
relatives who live away or for cultural reasons. A family may ask for your assistance to do so, or they may obtain them at the
mortuary.
8. I f the primary team has not already done so, it may be important to off er the suggestion of taking handprints and/or
footprints of the infant or child. Someone could go out to purchase an inkpad, poster paints or tempera paints if nothing is
available in the home with which to improvise. Th ese supplies are available to the staff in the resource area. Keep a soapy
washcloth or alcohol handy to quickly remove the coloring from the extremity. It’s best to try to do the prints as soon as
possible before any stiff ening of the body sets in. Again, if there are other children in the home it will be signifi cant to
obtain at least one print for the sibling to have for later on. Other family members can add their handprints also, creating a
“family portrait” of hands.
9. W hen contacting the mortuary, emphasize that it was a child that died so that they will be sensitive to the situation they will
face. When they arrive at the home, the family may need to say a last goodbye. Rather than have the child taken from the
home by the mortuary attendants, we have found that is much less painful if one of the adults/parents carries the child out
to the vehicle and surrenders over their child to the arms of the attendants. Parents have told us it felt less traumatic than if
they stood back and the baby was taken out by “strangers.” Occasionally this process becomes an informal processional to
accompany the child out of the home for the last time.
 2 Pediatric Palliative Care
10. If at all possible when the child is ready to be carried out of the home, ask the attendant to keep the child’s face and head
uncovered and not enclosed completely. Th e use of the body bag is very distressing and off ensive to most parents/family.
Perhaps the child can be wrapped in special blanket and/or a sheet. Sometimes the driver is willing to take the little one
partially covered like this until away from the home, and then secure the child’s body aft er leaving the area. Siblings can add
a special keepsake to accompany the child’s body (e.g., a note, fl ower, drawing, or stuff ed toy).
11. Remind the family of the local bereavement support resources available to them (community or your own organization) and
how/when the primary team will be following up. Request that arrangements for funeral/memorial service be
communicated to the child’s care team unless it is private, family-only. If visits are made aft er hours, notify primary team,
including MDs, of how the family is coping and report on events surrounding the child’s death. Th e primary team can follow-
up with their sick child’s or sibling’s school with permission from the parents.
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Th is also allows for a breathing space between
assignments or use of that space. Some programs place a
rose on the bed, a special sign on the door, or an image of
a dove, butterfl y, nightlight, or leaf to subtly designate
this sacred space. Honoring and respecting the space also
models to staff that it is not just “business as usual,” for a
brief time at least. At home, the sleeping area can be
tidied up but not stripped for a time. Same signage or
symbolism might be comforting. Again handling the
transitions with care makes these painful circumstances a
bit more bearable. Allowing the father to carry the child
out to the vehicle that will transport to mortuary (if
permissable by local regulations) can be a powerful and
loving tribute, like an honor guard, and this is a task the
father can assume as a fi nal loving act of care. Siblings can
tuck a note or picture or fl ower in with child as a symbol
of their connectedness.
Following the time of death, the nursing staff benefi ts
from the support of supervision to allow for a brief
respite, break, or time away from setting. In some
instances, they are given lighter caseload or, if necessary,
have time to debrief with another colleague, chaplain, or
other designee. Th e moral and spiritual distress comes
from accompanying the family through such emotional
territory; even when death comes gently and peacefully, it
takes an emotionally resilient person to adjust and switch
to the next task at and. Preserving the meaning and
satisfaction from this demanding work requires self-
discipline and intentionality to tend to one’s own
spirituality and whatever it takes for renewal and refl
ection on outside time or in even a few minutes a nurse fi
nds in the day. Great wisdom can be gained, burdens
lessened, and insights gained in a staff support encounter
or a more clinical debrief session, sharing what strategies
worked and how to improve keeps the care and
approaches in continual development and growth.
Participating in community-based programs, coalitions
regarding children’s health-care issues, collaborations on
grief and loss of children, and presenting cases at grand
rounds and professional meetings are all excellent ways to
connect with other providers and develop vital linkages for
a thriving pediatric palliative care program. Trust is
transferred between inpatient and home care/hospice
staff as a result of seeing, hearing, and experiencing what
the other has to off er. Th e patients and families become
more confi dent if they sense the confi dence in those who
make the referral. Once trust and accountability have
been established, they can form a strong and lasting
foundation that can be passed on to new members as they
join the team. Th e need for ongoing, honest, and open
communication between the two groups is critical.
Agencies and institutions are challenged with the moral
responsibility to make the right decision for the dying child
and his/her family, informing them of all relevant options
to best meet the needs of the child. It may be in the child’s
best interest for a home care agency to refer the child to
another, more appropriately qualifi ed provider, such as a
hospice program, if the program is better equipped to
provide end-oflife care for the child. Th e multidimensional
experience of a terminal illness requires attention to all
aspects of the child’s, parents’, and siblings’ needs,
including spiritual, physical, emotional, and psychosocial
needs. An individual nurse may feel overwhelmed by the
enormous burden of trying to meet all those needs alone
or may experience intense frustration and helplessness in
not being able to do so at all within the limitations of
traditional home health care. Diffi culties can also arise
when a referral to hospice care is off ered but refused by
families based on unfamiliarity and perhaps dependency
on the home health care nurse.
Possible solutions to this situation might be a joint case
conference to discuss the family’s issues and concerns or
making a few joint, overlapping visits to transfer trust and
to ease the oft en well-established relationships to the
hospice team. Th ese may be nonreimbursed visits, but
they may create an openness between the two programs
and increase referrals. Th ese visits may require
discussions with the parents regarding their fears and
concerns and how their needs might be met.
Transitioning Between Adult and Pediatric
Patients: Staffi ng Issues
Many hospices are not staff ed with nurses who are
comfortable dealing with babies, young children, and
adolescents who are dying or with the unique issues of the
parents and/ or extended family. Because the family’s
outlook is greatly infl uenced by the personalities and
reactions of the staff , a special degree of confi dence and
caring is required.15 Aft erhours staffi ng poses a particular
challenge, and sometimes a hardship, on the agency and
its staff . Adult care staff may be unwilling or incapable of
caring for pediatric patients. Th e most serious outcome
would be added stress and uncertainty imposed by the
very experts from whom families are seeking refuge and
comfort. Partnering with pediatric staff to train other staff
as well as thorough reporting to the aft er-hours staff are
helpful actions. Anticipation of needs and problems with a
plan for appropriate treatment can minimize and even
prevent symptom crises. Implementing a curriculum-
based training on caring for the seriously ill or dying child
can be done in a variety of ways. Interdisciplinary case
discussions, 1-hour lunch-and-learn sessions to cover key
care issues, scheduled over several weeks can result in a
commitment from nursing and other staff to then form a
committee or a special task force. Small funding can even
help to support a training program in palliative care
strategies for symptom management, communication,
addressing culture and spirituality, bereavement, ethics
and decision-making in the neonatal and pediatric end-of-
life milieu. As mentioned previously, the curriculum
available currently include the Pediatric ELNEC curriculum
of 10 modules with cases, key references, supplemental
teaching tools and resources, current practice highlights,
and models of excellence. Th e Initiative for Pediatric
Palliative Care (IPPC) sponsored by the Educational
Development Center (EDC) is an interdisicplinary model of
4 Pediatric Palliative Care

case-based experiential training, usually held in a

retreatstyle event for 3 days; small group and plenary
structure and accompanying fi lms as instructional
medium as well as the curriclum is available at
www/ippcweb.org.16 A distinguishing feature is the
emphasis on including parents in the role as faculty and
peer in the training. With proper preparation and clear
expectations, hearing from parents—the fi rsthand
experts—can be an invaluable asset to the learning
experience. Th e National Hospice and Palliative Care
Organization (NHPCO) has a pediatric curriculum that is
currently being revised to address the ongoing demand for
training for adult hospice programs to be prepared to care
for children as well as to address the pediatric palliative
care issues for a larger audience, interdisciplinary in focus.
In a related special focus, Association of Women’s Health
and Neonatal Nursing has a well-respected established
curriculum on Perinatal Loss, which was revised in 2008–
2009 to incorporate the elements of perinatal palliative
care in its curriculum; this curriculum is utilized in
hospitals around the country to meet competency goals in
this area.

Cultural Issues

Various cultures approach the child with a terminal illness

diff erently. Th is involves decision-making,
communication, openness with the patient, the role of the
parents in protecting the child from the truth about
his/her condition, the role that religion or faith plays in
health-care issues, and determination of who can
translate for the family respectfully. Language barriers and
lack of translation options can create great obstacles to
providing adequate care. For example, parents may direct
staff not to address the dying process with the child so as
not to discourage the child. Th ey may believe that in
saying “it” aloud, it will cause “it” to come to pass. Or
simply speaking of death may be too direct within the
context of their culture. Hope is oft en intertwined in
cultural issues and in the expression of that culture within
the experience of serious illness. For some families, this
may necessitate frequent and ongoing reteaching and
subsequent validation that a plan for collaborative care
has been respected. Th ese issues of decision-making are
of particular relevance to adolescents, as they play a more
active role in decision-making regarding illness and end-of-
life care.17