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Palliative Medicine ReportsVol. 2, No. 1
Original ArticleOpen AccessCreative Commons license


LONG-TERM FOLLOW-UP OF LEGACY SERVICES OFFERED BY CHILDREN'S HOSPITALS IN THE
UNITED STATES

 * Terrah Foster Akard, 
 * Samantha Burley, 
 * Maggie C. Root, 
 * Mary S. Dietrich, 
 * Brittany Cowfer, and 
 * Kim Mooney-Doyle

Terrah Foster Akard

*Address correspondence to: Terrah Foster Akard, PhD, RN, CPNP, FAAN, Vanderbilt
University School of Nursing, 518 Godchaux Hall, 461 21st Avenue South,
Nashville, TN 37240, USA;

E-mail Address: terrah.akard@vanderbilt.edu



Vanderbilt University School of Nursing, Nashville, Tennessee, USA.

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, 
Samantha Burley

Vanderbilt University School of Nursing, Nashville, Tennessee, USA.

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, 
Maggie C. Root

https://orcid.org/0000-0002-4941-228X

University of Maryland School of Nursing, Baltimore, Maryland, USA.

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, 
Mary S. Dietrich

Vanderbilt University School of Nursing, Nashville, Tennessee, USA.

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, 
Brittany Cowfer

Vanderbilt Children's Hospital, Nashville, Tennessee, USA.

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, and 
Kim Mooney-Doyle

University of Maryland School of Nursing, Baltimore, Maryland, USA.

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Published Online:13 Aug 2021https://doi.org/10.1089/pmr.2021.0009
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ABSTRACT

Background: Our 2012 survey of providers described legacy services offered at
children's hospitals nationwide. Since then, the science related to legacy
interventions has advanced, resulting in increased recognition of the importance
of legacy services. Yet, legacy interventions offered by children's hospitals
have not been recently described.

Objective: To describe current legacy services offered by children's hospitals
in the United States and compare with our previous results.

Design: Descriptive cross-sectional design.

Setting/Subjects: Participants included providers (N = 54) from teaching
children's hospitals in the United States.

Measurements: Electronic REDCap survey.

Results: Similar to our prior research, 100% of respondents reported that their
hospital offers legacy activities with 98% providing such services as a standard
of care. Notable increased numbers of children are participating in legacy
interventions compared with the previous study, now with 40% (compared with 9.5%
previously) of participants reporting >50 children per year. Patients being
offered legacy activities include neonatal intensive care unit (NICU) patients,
those with life-threatening traumatic injuries, those on life support for
extended periods of time, and those referred to hospice. Although not
statistically significant, the percentage of hospitals offering legacy-making to
children with cancer, neurodegenerative diseases, and life-threatening illnesses
is slightly increased from the prior time point.

Conclusions: Children across developmental stages and illness contexts and their
families can benefit from both the memories generated through the process of
legacy services and the subsequent tangible products. Providers should continue
to offer legacy opportunities to seriously ill children and their families
across a wide array of settings and illness contexts.




INTRODUCTION

Nearly 4 million children worldwide are estimated to need pediatric palliative
care,1 and ∼17 million parents are caring for children with serious illness in
the United States.2 In addition to substantial physical symptom distress,3–5
children with serious illness have shown high levels of depression, sadness,
distress, anxiety, and worry.3,5,6 Children may question God and struggle with
lack of meaning for their illness and concern for loved ones they will leave
behind as they prepare for their impending deaths.7–9 Parents may suffer
anxiety, depression, marital disruptions, job loss, family financial strain, and
below standard quality of life.4,10–15

Legacy-making, actions or behaviors aimed at being remembered, is one strategy
to improve child and parent psychosocial distress during advanced illness for
patients and their families.16–20 Leaving a legacy can be a concern for children
with serious illness who are developmentally able to understand that death is
permanent and irreversible and likely to think about death even if they do not
communicate it explicitly.20 For children whose deaths can be anticipated,
efforts to create memories and confirm they are loved and will be remembered are
important.21 For example, some children delegate who will receive certain
belongings after their death, write letters, draw pictures, take a special trip,
or speak with significant people.20 In turn, such activities may facilitate
documentation of children's legacies. Hospital staff have reported that legacy
activities helped ill children cope and communicate and family members cope,
communicate, and continue bonds in the case of the child's death.16

Legacy activities have been explored in both adult and pediatric
populations.16,17,19,20,22–31 Legacy interventions in adults have been shown to
increase patients' sense of dignity, purpose, meaning, and will to live, whereas
decreasing suffering and depressive symptoms.24,27,31 Legacy interventions in
children with cancer has shown promise to improve emotional quality of life,
communication, and coping among children with cancer (aged 7–17
years).16,22,23,32,33 Parents have reported that legacy interventions improved
parent–child communication (72%, n = 57), parent emotional comfort (63%,
n = 50), parent coping (46%, n = 36), child expression of feelings (86%,
n = 70), and child emotions (59%, n = 48).22

Our previous national survey of providers described legacy services offered at
children's hospitals in the United States.16 Since that survey in 2012, research
related to legacy interventions has advanced,17,22,23,32–34 as well as
availability, awareness, and acceptability of legacy services. As a result,
legacy interventions and services as a component of palliative care has received
increased recognition. For example, providers have recommended memory-making and
legacy-building as a priority domain for quality pediatric home-based palliative
care.35 However, gaps persist for recent literature to describe current services
offered to hospitalized children with serious illnesses and their families.
Updating our previous survey from 2012 is necessary to (1) conduct a long-term
comparison of legacy services offered to children with serious illness, (2)
identify advances in care related to legacy services provided to children with
serious illness, and (3) identify remaining gaps in care related to legacy
services. Thus, the purpose of this study was to describe current legacy
services offered by children's hospitals in the United States and compare with
our 2012 results.


METHODS

Provider reports of legacy activities were collected using the same electronic
REDCap survey developed for our original study.16 REDCap is a secure web
platform for building and managing online databases and surveys.36,37 Additional
questions were added regarding sibling services; those results will be reported
in another article.

After institutional review board approval from both Vanderbilt University and
University of Maryland, a list of potential participating institutions was
created. Institutions considered for this study consisted of primary teaching
hospitals (N = 77) that participated in the initial study, previously identified
through the National Association of Children's Hospitals and Related
Institutions (NACHRI) website.16 Two trained research assistants (RA), both PhD
students and experienced in palliative care research studies, called each
hospital to identify the best person to complete a survey regarding legacy
activities offered to pediatric patients. They asked to speak with hospital (1)
pediatric palliative care directors, (2) child life directors, (3) nursing
directors, or (4) child life specialists, respectively, to further explain study
details.

For individuals verbally agreeing to participate, the RA immediately e-mailed
the electronic REDCap survey link. The electronic survey included an
introduction that described the goal of the project, defined the term
legacy-making (“…actions or behaviors aimed at being remembered,” and included
examples (“…memory books, handmolds, songwriting, artwork, photos, and
videos.”). The introduction also explained that they survey would take ∼15
minutes to complete, responses would be anonymous, and results would only be
reported in aggregate to maintain confidentiality. Participants received e-mail
reminders to encourage participant response. Participants who completed the
survey received a $25 Starbucks electronic gift card.

Data collection occurred over four months (November 2019 to March 2020).
Enrollment was suspended in March 2020 to respect participant burden due to
COVID-19. Based on preliminary data, including similar geographic distributions
of the current sample to our previous sample, researchers closed the study and
proceed with analysis. Using the distributions of responses to each question
observed in the prior study as the expected values for the current distributions
under the null hypothesis, chi-square goodness-of-fit tests were used to test
for differences between those distributions. An alpha of 0.5 (p < 0.05) was used
for statistical significance. Qualitative content analysis identified recurrent
themes within open-ended feedback. Two trained coders began the process with
immersion (i.e., repeatedly reading transcripts), then clustered similar
ideas/excerpts to inform preliminary categories, reviewed and revised the coding
scheme, and repeated this process until no new themes emerged (i.e., saturation)
and consensus was reached.


RESULTS


PARTICIPANTS

All 77 hospitals were contacted at least once. Of those, 2 actively refused, and
18 passively refused (did not respond to voicemails). Reasons for refusal
included (1) difficulty scheduling a phone meeting and (2) hospital policy
prohibiting staff from sharing information requested in the survey. Three
verbally agreed but never completed the survey. In total, 54 of 77 (70.1%)
hospitals participated. The majority of participants were child life specialists
(n = 43; 79.6%) from hospitals in the Northeast (n = 22; 40.7%), with <100 beds
(n = 20; 37.0%), and with pediatric palliative care teams (n = 36; 66.7%). See
Table 1 for participant demographic information.

Table 1. Participant (N = 54) Demographic Characteristics

Role within facility Child life specialist43 (79.6) Nurse1 (1.9) Palliative care
director1 (1.9) Other9 (16.7)No. of beds <10020 (37.0) 101–15015 (27.8) 151–2009
(16.7) >20010 (18.5)Pediatric palliative care team Yes36 (66.7) No18 (33.3)




COMPARISON OF CURRENT SURVEY WITH PREVIOUS SURVEY

Table 2 includes survey questions and responses. All 54 (100%) participants
reported that their facility offers legacy activities to children and/or their
families. Differences in distributions of legacy activities reported between the
prior and current study were statistically significant in some of the areas
regarding type of activities offered, department offering activities, who
participates, numbers of patients participating, point in the illness trajectory
that services are offered, and perceived difficulties.

Table 2. Counts and Percentages Describing Legacy-Making Activities

Survey item2012 Study (n = 77), n (%)2020 Study (n = 54), n (%)pWhat
legacy-making activities does your facility offer? (select all that
apply)   Hand molds/handprints75 (97.4)54 (100)0.732Lock of hair68 (88.3)53
(98.1)0.025Memory book or journal65 (84.4)38 (70.4)0.004Photography58 (75.3)36
(66.7)0.138Art47 (61.0)35 (64.8)0.577Writing (letters, poetry, etc.)44 (57.1)22
(40.7)0.014Songwriting/music35 (45.5)30 (55.6)0.133Video15 (19.5)10
(18.5)0.864Other15 (19.5)21 (38.9)<0.001What department or program offers these
activities? (select all that apply)   Child life73 (94.8)53 (98.1)0.269Nursing36
(46.8)17 (31.5)0.025Palliative care22 (28.6)13 (24.1)0.469Other17 (22.1)9
(16.7)0.341Hospice5 (6.5)2 (3.7)0.407Who participates in completing the
activity? (select all that apply)   Patient and his/her family together59
(76.6)43 (79.6)0.607Staff (e.g., staff does the activity and gives the result to
the family)52 (67.5)42 (77.8)< 0.001Family alone26 (33.8)24 (44.4)0.095Patient
alone25 (32.5)22 (40.7)0.191Other20 (26.0)12 (22.2)0.535What pediatric patients
are offered legacy-making activities? (select all that apply) n = 53 Patients
with any life-threatening illness65 (84.4)46 (86.8)0.623Patients with cancer33
(42.9)25 (47.2)0.523Other24 (31.2)19 (35.8)0.458Patients with neurodegenerative
diseases23 (29.9)21 (39.6)0.118Approximately how many patients at your facility
participate in legacy-making activities each year?n = 74n = 52<0.0010–1025
(33.8)3 (5.8) 11–207 (9.5)9 (17.3) 21–3017 (23.0)10 (19.2) 31–4012 (16.2)5
(9.6) 41–506 (8.1)4 (7.7) >507 (9.5)21 (40.4) What point in the illness
trajectory are patients and/or families offered these
activities?n = 73 0.013Before the patient dies: when cure is no longer being
sought31 (42.5)17 (31.5) Other23 (31.5)27 (50.0) After a child dies10 (13.7)8
(14.8) Before the patient dies: soon after patient's diagnosis9 (12.3)2
(3.7) Legacy-making activities are offeredn = 72n = 530.679As a part of standard
of care70 (97.2)52 (98.1) Only if requested by the patient and/or their family2
(2.8)1 (1.9) What is the goal of these activities provided at your facility?
(select all that apply)   To benefit bereaved families69 (89.6)51 (94.4)0.246To
benefit child/patient59 (76.6)41 (75.9)0.898To benefit the family while the
child is ill53 (68.8)42 (77.8)0.158Other8 (10.4)5 (9.3)0.789How do these
activities help your patients and families? (select all that apply)   Gives
family members tangible ways to remember the deceased child74 (96.1)54
(100.0)0.439Coping strategy for family members who have experienced the death of
a child66 (85.7)49 (90.7)0.293Coping strategy for child patients58 (75.3)37
(68.5)0.243Coping strategy for family members who have an ill child57 (74.0)46
(85.2)0.062Creates an opportunity for children and families to talk about
death57 (74.0)41 (75.9)0.756Creates an opportunity for child patients to express
themselves54 (70.1)42 (77.8)0.223Gives children opportunities to do or say
something to be remembered52 (67.5)41 (75.9)0.191Other7 (9.1)9 (16.7)0.052What
do you perceive is difficult for patients or families participating in
legacy-making activities? (select all that apply)   It is emotionally hard for
families to participate (e.g., it takes hope away from families)59 (76.6)45
(83.3)0.247It is physically hard for patients to participate (e.g., they are too
sick, too tired)35 (45.5)34 (63.0)0.009It is emotionally hard for children to
participate (e.g., these activities make children sad)21 (27.3)13 (24.1)0.603It
is developmentally difficult for children (e.g., these children do not
understand what these activities mean)16 (20.8)13 (24.1)0.546Other9 (11.7)14
(25.9)0.001

Totals for each survey item may be >100% as respondents were allowed to select
multiple responses.



TYPES OF ACTIVITIES

Compared with 2012, statistically significant decreases were noted in types of
activities, including written expression (memory book/journal and writing).
Participants reported notable increases to lock of hair activities and “other”
items such as creating jewelry or heartbeat recordings/songs/teddy bears.

DEPARTMENT OFFERING ACTIVITIES

Similar to 2012, child life continues to most frequently (98.1%) offer legacy
activities to children and their families. Notable decreases were noted in
nurses offering legacy services, now with 31.5% compared with 46.8% previously
(p = 0.25).

WHO PARTICIPATES AND NUMBERS OF PATIENTS PARTICIPATING

Similar to prior, 100% of respondents stated that their hospital offers legacy
activities with 98% providing such services as a standard of care. Patients and
families together still most frequently (79.6%) participate in these activities
together. Increases were seen in staff completing legacy activities for the
family, now with 77.8% compared with 67.5% previously (p ≤ 0.001). Notable
increased numbers of children are participating in legacy services at children's
hospitals across the United States, now with 40% (compared with 9.5% previously)
of participants reporting >50 children per year. Similarly, 5.8% (from 33.8%)
report 10 or fewer children participating in legacy activities per year.

POINT IN THE TRAJECTORY WHEN SERVICES ARE OFFERED

Half (50%) of respondents reported that legacy services are offered at all
points throughout the illness trajectory, noted as “other” in the response
options. This included before and after a patient's death.

PERCEIVED DIFFICULTIES

Similar to prior, respondents most frequently (83.3%) reported barriers to
legacy services, including that it is emotionally hard for families to
participate. Significant increases were seen in reports of it being physically
hard for patients to participate, now 63% compared with 45.5% in 2012
(p = 0.009).


FUTURE RESEARCH

Forty-eight (89%) participants reported that more research is needed regarding
pediatric legacy activities. Of the 48 participants, 14 suggested the need to
determine potential benefits of legacy services to patients and their family
members. For example, one participant suggested research to explore the “benefit
of legacy work prior to the death, when the child is still able to participate.”
Others suggested examination of “benefits of legacy materials/activities for
families” and “effects on siblings.” One participant suggested research
including potential benefits of legacy services on health care providers: “I
would also like to know more about the impact of facilitating legacy and end of
life projects on CCLS [certified child life specialists].” Thirteen participants
suggested research related to the long-term effects of legacy activities. For
example, one participant suggested “follow-up with families sometime after the
death of a child (six months, a year, etc.) and ask them if they were offered
legacy items, did they participate, and if so, has it helped with the grieving
process.” Six participants wanted research to enhance our understanding for
“when is the best time to introduce [legacy] services.”

Although some suggestions for future research focused on what types of legacy
activities or services were most beneficial, some participants emphasized that
the mechanism of intervention effect is based on the legacy-building process
rather than the product. One participant said, “This experience is about process
not product… all the items play the same role in supporting the family.” Another
participant shared, “The memory is in the doing, rather than in the creation of
a thing. The thing is the product of an amazing experience together and a
reminder of that time.”


DISCUSSION

This study describes and compares legacy activities currently offered in
pediatric hospitals compared with approximately eight years prior, based on
staff perspectives. Our results suggest that numbers of children participating
in legacy activities are increasing. Because recent data suggest that fewer
children are dying in the hospital than in the past,38,39 our results may
instead reflect an increase in offering of legacy activities, perhaps to a
broader subset of patients than at the prior time point. This is further
supported by the breadth of answers to the question about which pediatric
patients are offered legacy activities, including NICU patients, those with
life-threatening traumatic injuries, those on life-support for extended periods
of time, and those referred to hospice.

Despite increased participation in legacy services and perhaps offering to a
broader population, staff perceived the goals of legacy activities as the
same—primarily to benefit bereaved families more so than the patients
themselves. All participants indicated that legacy interventions give bereaved
families a tangible way to remember their deceased child. Recent data suggest
that parents who participate in legacy artwork with their child before their
child's death have less prolonged grief and report feeling more supported by the
hospital staff.30 Although not statistically significant, there was a slight
increase (85% vs. 74%) in respondents who felt that legacy activities were
useful as a coping strategy for family members of ill children, which may also
be reflective of offering these opportunities earlier in the illness trajectory
before death is imminent at some institutions. Overall, the additional benefits
of providing an opportunity for children and families to talk about death and
helping families cope after a child's death are consistent with what has been
reported as benefits of legacy artwork in qualitative interviews with parents
after a child's death.40 Some respondents indicated that siblings participated
in legacy activities and that a primary goal was to help siblings. Although the
benefits of participation in legacy activities for siblings of dying children
are not well known, it is clear that most siblings experience personal and/or
relationship changes after the death.41 More research should be done in this
area to determine if participation in legacy activities may also benefit
siblings.

It is not clear if the process of legacy activities or the final product is most
important. The majority of participants reported that children and their
families complete the activity together, which allows opportunities for
memory-making and conversations about death with the sick child. Parents have
reported that a storytelling legacy intervention for children with cancer helped
children express their feelings, suggesting the process of participating in
legacy-making was important for the child.23 However, since the last national
legacy survey,16 results of our current study suggest a significant increase in
reports of staff completing legacy activities without the family's
participation, as well as increased reports of parents and siblings completing
legacy activities alone. Both of these cases exclude the child's participation,
such that the child would not benefit from the process of legacy-making. This
could suggest that health care professionals have recognized the potential
benefits of legacy interventions for both children with serious illness as well
as families when the patient cannot benefit from participation.

Important to note is the increased concerns that it is physically too difficult
for children to participate. This could be due in part to increasing
hospitalization rates of medically complex children42 and may explain the
increase in staff and family-only participation. This may also explain the
trends in the activities offered. Nearly all institutions offer handprints/molds
and a lock of hair, neither of which requires active participation from the
child. However, fewer institutions than prior indicated they are offering
journaling and writing, activities that may require more engagement of the
child. In summary, legacy activities can be individualized to the needs and
wishes of children and families. More study is needed to help determine what
patients may be most likely to benefit from active participation in the process,
whereas other families may benefit more from receiving a final product created
by staff, for example.

Child life departments are leading the delivery of legacy activities at nearly
all institutions, with fewer institutions than prior reporting that legacy
activities are offered through the nursing department. Although nurses caring
for dying children frequently identify the facilitation of making memories and
creating mementos as one of their roles, nurses have numerous other important
roles in guiding families through their child's death.43,44 It may be that the
actual offering of legacy activities has been delegated more completely to child
life specialists, reflecting the growth of the child life profession since the
prior time point. More study is needed to clearly delineate how other health
care professionals (e.g., physicians, advanced practice nurses, social workers,
music therapists, and chaplains) can support child life departments delivering
this care at the bedside.

We acknowledge several limitations of our study. First, participants were
limited to those from institutions represented in the previous sample to allow
for data comparison; thus, the study does not account for the growth in
children's hospitals since 2012. The large majority (nearly 80%) of participants
were child life specialists, so results may not accurately reflect perceptions
of other health care providers. Although we did not aim to talk with the same
person at each hospital from the previous study, there is potential bias if
participants read the first national survey. The majority of respondents
represented hospitals located in the Northeast, thus results may not be
representative of legacy services in the United States. Results also may not
generalize to hospitals outside of the United States or adult patient
populations. Despite these limitations, our study contributes new information to
the field of pediatric palliative care and how legacy services have evolved over
time.


CONCLUSION

This novel study provides an updated description of legacy services offered by
children's hospitals across the United States to children and their families and
compares results with our prior study. Research related to legacy interventions
for children has substantially advanced over the past decade, with more children
receiving services. Future research should evaluate the impact of legacy
interventions on family members' (e.g., parents and siblings) experiences at end
of life and in bereavement. Studies should also determine the best time in the
illness trajectory to offer legacy services and their impact to families over
time. Extension of our study is needed to determine types of legacy
interventions offered through nonhospital settings, such as pediatric hospice or
other pediatric palliative care organizations. If less children are dying in
hospitals, it is important for providers to offer this standard of care to
children dying in their homes. Longitudinal designs that examine outcomes from
predeath through bereavement are needed to examine the short- and long-term
effects of legacy interventions. Mechanistic studies need to be conducted to
move intervention work forward, and physiological measures can be considered in
addition to psychosocial measures.

Our findings illustrate that legacy services are a sustained and growing
component of palliative care being offered to children with serious illness and
their families. This study documents that legacy-building has moved from an
anecdotal hospital service to an empirical-based field of research over the past
decade. Palliative care providers can partner with researchers to continue
advancing the science and increase recognition of this important inquiry of
research. Health care providers should continue to offer legacy opportunities to
children with serious illness and their families across a wide array of settings
and illness contexts, including earlier in the illness trajectory and in
hospital and home-based environments. Providers can educate patients, family
members, and health care professionals that legacy services are not only for
children near end of life, but also those who will be cured and live long
healthy lives. More research is needed to translate evidence-based legacy
interventions to pediatric palliative care practice.


ACKNOWLEDGMENTS

Thank you to hospital staff who generously participated in this study.


FUNDING INFORMATION

This research was supported in part by the Vanderbilt University Chancellor's
Faculty Fellow award (PI: T.F.A.) and grant UL1 TR000445 from NCATS/NIH.


AUTHOR DISCLOSURE STATEMENT

No competing financial interests exist.

Cite this article as: Akard TF, Burley S, Root MC, Dietrich MS, Cowfer B, and
Mooney-Doyle K (2021) Long-term follow-up of legacy services offered by
Children's Hospitals in the United States, Palliative Medicine Reports 2:1,
218–225, DOI: 10.1089/pmr.2021.0009.

Abbreviation Used

RA

research assistants


 * Figures
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 * Related
 * Details


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 * Cited by
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    * Helping Children Cope with Loss: Legacy Interventions for the Grieving
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      5 September 2022 | Continuity in Education, Vol. 3, No. 1
    * Digital Storytelling for Bereaved Individuals in a Virtual Setting
      
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Volume 2Issue 1
Dec 2021
Information

© Terrah Foster Akard et al., 2021; Published by Mary Ann Liebert, Inc.

--------------------------------------------------------------------------------

To cite this article:
Terrah Foster Akard, Samantha Burley, Maggie C. Root, Mary S. Dietrich, Brittany
Cowfer, and Kim Mooney-Doyle.Long-Term Follow-Up of Legacy Services Offered by
Children's Hospitals in the United States.Palliative Medicine Reports.Dec
2021.218-225.http://doi.org/10.1089/pmr.2021.0009
creative commons license
 * Published in Volume: 2 Issue 1: August 13, 2021

Keywords
 * hospice and palliative care nursing
 * hospitalized child
 * palliative care
 * palliative medicine
 * survey
 * terminal care

--------------------------------------------------------------------------------

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License [CC-BY] ( http://creativecommons.org/licenses/by/4.0), which permits
unrestricted use, distribution, and reproduction in any medium, provided the
original work is properly cited.

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