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439
HRQOL than the general population and similar to other children with chronic
medical conditions [38]. While an exact mechanism for neurodevelopmental delays
in the pre-transplant period has not been delineated, there are several factors that are
attributed to cognitive and developmental outcomes including age at disease onset,
duration of disease, and pre-transplant morbidity. Moreover, degree of malnutrition,
long-term hospitalization, and surgical complications are likely to also play a role in
developmental outcomes. For example, most pediatric liver transplant recipients are
<2years of age and most develop end-stage liver disease early in life and likely
experience some degree of hepatic encephalopathy. Similarly, chronic renal failure
is thought to have negative neurodevelopmental impacts. Data suggest that children
with cyanotic heart disease have progressive cognitive impairment as a result of
chronic cyanosis and thus, earlier correction lends to more favorable outcomes [38,
41]. Objective and measurable assessments of HRQOL have been the recent focus
in the adult and pediatric transplant communities with several validated, organ-
specic tools. The Pediatric Quality of Life Inventory (PedsQL) Transplant Module
has been validated and demonstrates excellent feasibility and reliability and is a
promising tool to assess HRQOL [41, 47]. The PCP is an essential provider in the
early identication of developmental delays and providing the necessary resources
for appropriate intervention. These include utilizing state-based early intervention
programs in children <3years old and psychoeducational testing in school-aged
children and developing individualized education plans.
15.7 Adolescence: Psychosocial Impacts andAdherence
Despite the successful restoration of organ function, improved physical functioning,
and survival, many children who have undergone solid organ transplantation have
mental health impacts. The burden of disease and often life-threatening illness as a
result of end-stage organ failure can lead to medical trauma, social isolation, and
disruption of family and social interactions. Penner and colleagues sought to detail
the often under-recognized mental health challenges in pediatric solid organ trans-
plant recipients. They examined the symptoms of anxiety, depression, post- traumatic
stress, and needle fear. The study found that a fth of the sampled population had
post-transplant trauma related symptoms which is a gure supported by prior stud-
ies that transplant patients are four times as likely to meet criteria for post-traumatic
stress disorder (PTSD) than the general population [48, 49]. This is particularly
pertinent as studies have demonstrated a link between mental health and medication
adherence [50, 51], which can lead to graft loss and increased mortality. Furthermore,
Shemesh, etal. found that both clinicians and parents tend to underestimate the
degree of emotional symptoms, such as depression and post-traumatic stress, in
adolescent transplant patients and these symptoms tend to become more severe as
the patient ages [52].
There are many developmental changes that occur during adolescence as it is a
time of signicant brain growth, cognitive growth, and social-emotional maturation.
15 Care ofthePediatric Solid Organ Transplant Recipient
440
For many patients, organ transplantation can converge with this critical time of ado-
lescent development and have far-reaching psychological impacts. Specically,
adolescence is a time for prefrontal cortical development, thereby building skills for
executive functioning, decision-making, and organization [53]. Chronic disease and
end-stage organ function, medication impacts, and chronic stress can all lead to
neurodevelopmental and neurocognitive delays in adolescent organ transplant
patients which in turn can impact adherence, late transplant outcomes, and quality
of life [54–56].
15.8 Transition ofCare
Solid organ transplantation is now the mainstay of care for children experiencing
organ failure, with excellent survival of >80% into young adulthood [41]. With
these improvements in long-term survival, more adolescent and young adult (AYA)
SOT recipients will transfer from pediatric to adult healthcare systems. Increasing
risks of medication non-adherence and organ rejection accompany the developmen-
tal changes of increased patient autonomy and responsibility [57, 58]. Table15.4
details the key differences in transition, transfer and retention.
Although a measure of transfer success has been cited as the attendance of a
clinic visit with an adult provider [59], retention in uninterrupted adult care is the
ultimate goal of transition [60].
The role of the primary care provider in transition of care for the pediatric SOT
patient is to support the incorporation of the Six Core Elements of Transition™ and
support the clinical transition process for specialty care practices. Resources online
provide side-by-side comparisons that are intended for use by pediatric, family
medicine, med-peds, and internal medicine practices to assist youth and young
adults as they transition to adult-centered care, and are aligned with American
Academy of Pediatrics, American Academy of Family Physicians, and American
College of Physicians Clinical Report on Health Care Transition [50, 61]. The ele-
ments of transition are known as the Six Core Elements of Health Care Transition™
and include:
1. Establish a transition and care policy/guide.
2. Tracking and monitoring.
Table 15.4 Denitions of Transition, Transfer, and Retention in Healthcare
Transition Transfer Retention
The planned process of movement
from pediatric to adult healthcare,
including increasing the AYA
recipients’ responsibility for care and
decreasing caregiver involvement over
months or years
The discrete event in
which both the location
and provider of care
change from a pediatric
to an adult healthcare
system
Uninterrupted adult care as
dened by an average of at
least one appointment
attended per year in the rst
3years post transfer
K. M. Saarela and E. K. Hsu
441
3. Regular assessment of transition readiness and orientation to adult practice.
4. Transition planning and integration into adult practices.
5. Transfer of care and conducting initial visits and
6. Transfer completion and commitment to ongoing care.
The OPTN Pediatric Transplantation committee proposed responsibilities of
pediatric teams and accepting adult providers in successful transition and transfer
practices specic to transitioning SOT recipients [51].
15.9 Conclusion
There have been remarkable improvements in both patient and graft survival in
pediatric organ transplantation. Although end-organ failure is alleviated through
transplantation, pediatric solid organ transplant recipients frequently face a signi-
cant burden of chronic diseases and comorbidities related to their underlying condi-
tion and post-transplant management. The primary care provider is uniquely
positioned to provide the necessary continuity of care, aid in early recognition of
complications, facilitate access to community resources, and ease the process of
eventual transition to adult care. The PCP is an essential member of the patient’s
care team and integral to long-term patient wellbeing and graft survival.
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15 Care ofthePediatric Solid Organ Transplant Recipient
447© The Author(s), under exclusive license to Springer Nature
Switzerland AG 2025
C. J. Wong (ed.), Primary Care of the Solid Organ Transplant Recipient,
https://doi.org/10.1007/978-3-031-98076-3_16
Chapter 16
Palliative Care intheAdult Solid Organ
Transplant Recipient
KatherineG.Hicks, EleanorCurtis, andMelissaA.Bender
16.1 Introduction: Overview ofPalliative Care
Palliative care is specialized medical care for people living with serious illness that
focuses on quality of life for both the patient and family [1]. Palliative care interven-
tions can be provided regardless of prognosis and have been associated with
improvements in quality of life, symptom burden, and patient and caregiver satis-
faction [1, 2]. A common misconception is that palliative care cannot be delivered
if a patient is being actively treated for a disease—rather, palliative care is compat-
ible with disease-directed therapies. Additionally, palliative care interventions
increase the rates of advance care planning and decrease overall healthcare utiliza-
tion [1, 3, 4].
All clinicians should be trained in the core principles of palliative care: evidence-
based holistic approach to serious illness care that includes pain and symptom man-
agement; psychological, social and spiritual domains; culturally responsive
communication skills to determine patient/family goals; and interprofessional col-
laboration and coordination of care to achieve those goals [5–7]. The term “primary
palliative care” refers to basic palliative care skills that all clinicians should learn
K. G. Hicks
Section of Geriatrics and Palliative Care, Department of Medicine, Baylor College
of Medicine, Houston, TX, USA
e-mail: eleanor.curtis@us.af.mil
E. Curtis
Trauma, Burn and Rehabilitative Medicine, Abu Dhabi, UAE
e-mail: Katy.Hicks@bcm.edu
M. A. Bender (
*)
Department of Family and Community Medicine, University of Cincinnati College
of Medicine, Cincinnati, OH, USA
e-mail: benderma@ucmail.uc.edu
448
Table 16.1
Primary versus specialty palliative care
Primary palliative care Specialty palliative care
• Basic palliative care skills
– Pain and symptom management
– Communication skills especially
eliciting patient and family goals,
coordinating care
• May be delivered by primary care
providers, specialists, or any member
of a patient’s care team
• Both inpatient and outpatient
• Advanced palliative care skills
– Treating refractory symptoms
– Facilitating complex medical decision-making
around approaching end of life, worsening health
status or organ dysfunction, or cognitive decline
– Navigating challenging family dynamics
• Performed by practitioners who have completed
additional training, e.g., fellowship, board
certication
• Both inpatient and outpatient
regardless of specialty, such as aligning medical treatment with patient goals and
basic symptom management [3]. When patients with serious illness present to their
primary care clinicians, this may be an opportunity to incorporate palliative care
interventions into their medical care. Referral to specialty palliative care may be
needed in cases of refractory symptoms, worsening health status or cognitive
decline, approaching end of life, consideration of a high-risk procedure or other
advanced therapy, complex existential distress, or conducting a challenging family
meeting (Table16.1) [3, 4].
16.2 Palliative Care intheSolid Organ Transplant Recipient
Palliative care has been proposed for patients with advanced organ failure beginning
at diagnosis and continuing through transplant and beyond, given the associated
high morbidity and mortality awaiting transplantation and post-transplantation [4,
8–14]. Palliative care interventions in patients awaiting solid organ transplantation
have been associated with improvement in patient symptoms and increased docu-
mentation of advance care planning discussions [4]. Evidence suggests that pallia-
tive care after transplantation may also improve symptoms [15].
Primary care providers have a unique opportunity to incorporate palliative care
interventions, such as revisiting advance care planning and basic symptom manage-
ment, into the care of solid organ transplant recipients. As noted in the previous
chapters, the increasing number of solid organ transplant recipients creates a more
signicant role for primary care providers. Furthermore, palliative care specialists
are few in number and do not have the capacity to provide consultation on all trans-
plant recipients before and after transplantation. Therefore, primary care providers
with palliative care skills ideally would ll this need whenever possible [3].
Depending on a patient’s transplantation course, the transplant specialist’s time
may be completely occupied by managing immunosuppression, treating infectious
complications, warding off rejection, and checking for graft dysfunction. Primary
care providers often have the advantage of having a long-term therapeutic relation-
ship, in some cases both before and after transplantation. The primary care provider
typically continues to manage chronic and acute medical problems, provides
K. G. Hicks et al.
449
preventative care, and may have a history of knowing the patient’s decision-making
preferences and values, as well as familiarity with a patient’s social situation.
Studies have consistently shown that patients want the physicians caring for them,
rather than outside specialists, to discuss advance care planning [16, 17]. While
solid organ transplant recipients may have a close relationship with their transplant
specialists, they may be hesitant to bring up palliative concerns with their transplant
specialist because of concern for disappointing them—some patients may feel more
comfortable broaching this topic with the primary care provider.
16.3 Advance Care Planning
Advance care planning (ACP) is the ongoing process by which patients share per-
sonal values, goals, and preferences regarding current and future medical care [18].
These preferences should then be documented in the medical record and in an
advance directive (AD). Conversations between patients and their physicians
regarding preferences for their care in the setting of serious illness are associated
with increased goal-concordant care, decreased use of unwanted life-sustaining
treatments, higher incidence of preferred place of death, and increased hospice use
at end of life [19–22].
16.3.1 Advance Directives
An advance directive (AD) is a legal document that indicates a person’s preferences
for medical care if they were to become seriously ill or incapacitated [23, 24].
Having written documentation of a person’s wishes can promote more goal-
concordant care, unburden caregivers with having to guess the wishes of their loved
one in a health crisis, and help avoid unwanted medical care [19, 20, 25, 26]. An
advance directive typically includes preferences for life-sustaining treatments in the
setting of serious illness (Living Will) and addresses who would be the person’s
surrogate decision maker if he or she were to become incapacitated (Durable Power
of Attorney for Healthcare, DPOA-HC).
Whereas an advance directive can be completed by an adult at any age or stage
of health, a “Provider Orders for Life Sustaining Treatment” form is an optional
document in the United States (terminology varies, also called POLST, MOLST,
POST, MOST, COLST or TPOPP) that focuses on adults with serious illness or
frailty. Unlike an AD which is completed by a patient and signed by a witness or
notary, a POLST form must be completed and signed by the patient and a physician
or advanced practice provider. These forms serve distinct purposes and are comple-
mentary, not duplicative [23].
There are many types of advance directive documents available, some specic to
a given state or institution [23, 24].
Table 16.2 summarizes advance directive documents used commonly in the USA.
16 Palliative Care intheAdult Solid Organ Transplant Recipient