Cell Stem Cell

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Therapeutic Hope, Spiritual Distress,

and the Problem of Stem Cell Tourism
Insoo Hyun​1​,​*
1​
Department of Bioethics, School of Medicine, Case Western Reserve University, Cleveland, OH 44106-4976, USA
*Correspondence: ​insoo.hyun@case.edu
http://dx.doi.org/10.1016/j.stem.2013.04.010

Managing patients’ therapeutic hope and spiritual distress—in addition to tighter regulation of commercial
therapies and improved patient understanding—may offer a more comprehensive approach to reducing the
overall incidence of stem cell tourism. Such patient support must occur early in the clinical relationship after
appropriate assessment and discussion.
also created a website called ‘‘A Closer have implications for how we ought to
Look at Stem manage therapeutic hope. The first differ
‘‘But what we call our despair is
Cell Treatments’’—again, to help inform ence is that therapeutic misconception
often only the painful eagerness of
patients about the reality and dangers of and misestimation both fundamentally
unfed hope.’’
unproven commercial stem cell therapies involve patient misunderstandings,
​ eorge Eliot, ​Middlemarch
—G (​http://www.closerlookatstemcells.org​). whereas therapeutic hope need not.
Another group has advocated for better Patients might understand when an
physician education about stem cell ther intervention’s chances of success are
Introduction
apies, so that doctors can advise patients extremely remote at best, but may still
One of the most serious ethical problems
against traveling to offshore stem cell want to ‘‘give it a shot’’ as long as a bene
facing stem cell science today concerns
clinics (​Caulfield and Zarzeczny, 2012​). ficial outcome cannot be ruled out as
the large number of gravely ill adult and
Efforts such as these emphasize the categorically impossible. The second
pediatric patients who travel for unproven
importance of regulation and information important difference is that both thera
stem cell treatments marketed via the
to reduce the overall incidence of stem peutic misconception and misestimation
Internet (​Petersen and Seear, 2011​; ​Lev
cell tourism. are viewed as problems associated with
ine and Wolf, 2012​). This global phenom
As someone who has been closely the enrollment of human subjects in
enon (hereafter referred to as stem cell
involved with the above efforts, I believe biomedical research. Therapeutic hope,
tourism) puts patients and their families
these strategies are extremely important, in contrast, is not restricted to a research
at risk of physical, financial, and emo
but they may not be enough. While context, for it often comes into play for
tional harm by unscrupulous snake oil
patient misinformation can often fuel a patients and their families across a full
salesmen bent on profiting off of people’s
demand for stem cell tourism, therapeutic range of clinical care settings, and can
unfed hopes.
hope and spiritual distress might also be be especially powerful in serious cases
In response, stem cell researchers,
powerful motivators for those seeking un where there may be few or no acceptable
clinicians, bioethicists, policymakers, and
proven stem cell treatments. Therapeutic medical alternatives left.
professional societies like the Inter
hope and spiritual distress (concepts that These differences may suggest to
national Society for Stem Cell Research
I define and analyze below) are some readers that therapeutic hope is a
(ISSCR) have advocated strategies to
complicated issues that require more deeply emotional, sometimes irrational
reduce both the supply and the demand
than providing decision makers with the motive not always amenable to rational
for stem cell tourism—the first of which is
right information. Drawing on the aca discussion and realistic prognostications.
encouraging local governments and
demic literature from family medicine, This, I believe, would be to
national regulatory bodies to crack down
nursing, and positive psychology, I misunderstand of the nature of
on fraudulent stem cell clinics, and the
discuss the complexities of therapeutic therapeutic hope. Hope is not some
second of which is arming patients with
hope and spiritual distress, and I recom vague, amorphous yearning for
information to discourage them from
mend some practical approaches to man something good to occur. In the psy
crossing borders to pursue fraudulent
aging these possible conduits to stem chological literature, hope is understood
and potentially dangerous stem cell
cell tourism. as having a dynamic ‘‘architecture’’
treatments. The ISSCR, for example, has
composed of (1) goal-directedness; (2)
developed a ‘‘Patient Handbook on Stem
Therapeutic Hope pathway thoughts concerning how to
Cell Therapies,’’ which is available in
What is therapeutic hope? At first glance, achieve one’s goals; and (3) the percep
multiple languages (​http://www.isscr.
it may be tempting to lump therapeutic tion that one has the ability to pursue
org/home/publications/patient-handbook​)
hope together with the more familiar no these pathways (​Snyder, 2000​; ​Feudtner,
. Its purpose is to address common
tions of therapeutic misconception and 2009​). Hope differs from wishful thinking
patient misperceptions about stem cell
misestimation. But there are some impor in that the former is based on what a
treatments and research. The ISSCR has
tant differences, and these differences person believes are realistic
expectations, and hope generates future-oriented

Cell Stem Cell ​12​, May 2, 2013 ª2013 Elsevier Inc. 505
amelioration. Indeed, the goal of disease
amelioration may function as an
intermediary step toward the patient’s
longer-range goals, such as not being a
burden on the family and wanting to lead
a meaningful life. More realistic and
behaviors. Unlike passive expectations
or mere wishes, hope involves the active
pursuit of valued goals through
perceived pathways.
This broad conception of spirituality
can help inform our understanding of spir
itual distress. According to the nursing
and family medicine literature, spiritual
distress results when individuals are un
able to find sources of meaning, comfort,
and connection (​Anandarajah and Hight,
2001​). Severe, chronic illness can trigger
spiritual distress in many ways. For
Cell Stem Cell

This dynamic understanding of the na
ture of hope has direct relevance for our
discussion of stem cell tourism. If a
patient is motivated by therapeutic hope
to pursue a commercial stem cell
therapy, it is likely that this motivation will
have the following structure: (1) the
patient has the goal of disease
amelioration; (2) he or she believes stem
cell therapy is a pathway to this goal; and
(3) he or she believes he or she is
capable of pursuing this pathway by trav
eling to a stem cell clinic. Better patient
education may (with limited success)
cause a patient to reevaluate whether a
proffered stem cell therapy is likely to
serve as a pathway to his or her goal. In
the ideal case, this reevaluation will
cause the patient to abandon his or her
plans to travel to a stem cell clinic. But
notice how this informative approach
does nothing to address the patient’s
wider range of goals or to provide any
alternative path ways. Failure to address
the full com plexity of therapeutic hope
could have negative consequences for
the patient.
One negative consequence is that the
patient may lose the will to remain
actively engaged with his or her future
well being. Typically when a person loses
one pathway to a goal, this loss is
followed by a shift to a new pathway, and
the per son remains emotionally engaged
with the future. But when a goal is
deemed unattainable because of a
frustrated pathway and no new pathway
emerges to take its place, then a person
may disen gage with any future-oriented
behavior, or, alternatively, may fail to
disengage completely from a lost goal
and suffer as a result by failing to
respond to new op portunities (​Carver
and Scheier, 1998​). The take-home
message of this analysis is that when
one pathway becomes closed for a
patient, another one must be offered in
its place that could address his or her
goals. Patients who seek a com mercial
stem cell therapy may view the treatment
as a pathway to several other important
goals related to their goal of disease
Forum
attainable pathways to these longer
range goals must be explored with the pa
tient and offered to him or her if possible.
It is also important for caregivers to
instance, illness may reduce patients’
address the agency element of therapeu
abilities to seek ways to fulfill their
tic hope. Patients and their families are
spiritual needs, or it may isolate them
able to deal better with serious illness
from their normal routines, such as their
when they maintain a sense of control
ability to attend church and community
over future events and anticipate suc
gatherings (​Ross, 1995​). Some patients
cessful outcomes (​Carver and Scheier,
who believe in a center of control outside
1998​). Therapeutic hope may be one of
themselves (i.e., God) may come to
the ways patients engage themselves in
question their relationship with God
this coping strategy. Often a patient’s in
because of the illness experience. Other
terest in pursuing a stem cell therapy is
patients may be forced to realize that
the manifestation of a desire to ​do some
they are not in total control of their lives
thing​. The need to maintain a sense of
in the event of severe illness. As one
control over one’s own future is crucial
nurse put it: ‘‘Many individuals do not
for many patients. Without it, it is easy for
seriously search for the meaning and
patients to slip into feelings of help
purpose of life but live as if life will go on
lessness and despair.
forever. Often it is not until the crisis,
illness. or suffering occurs that the
Spiritual Distress
illusion (of security) is shattered.
In striving to understand the nature of
Therefore, illness, suffering. and
therapeutic hope, we must inevitably
ultimately death, by their very nature,
confront the notion of spiritual distress.
become spiritual encounters as well as
As the quote by George Eliot above sug
physical and emotional experiences’’
gests, hope and despair are interrelated.
(​Ross, 1995​).
We would not be susceptible to ‘‘the pain
Many patients with intractable medical
ful eagerness of unfed hope’’ if we were
conditions targeted by dubious stem cell
not beings capable of hoping.
clinics—and many parents of very ill chil
Maintaining therapeutic hope, one might
dren—are susceptible to spiritual distress
say, is a way of warding off spiritual
for the reasons just cited. Spiritual
distress. Hope is the antidote to despair.
distress, if left alone, can cause some in
But what exactly is spiritual distress,
dividuals to seek unhealthy ways of
and why is it important for our discussion
finding meaning and connection, all in an
of stem cell tourism? It is important to
effort to recover a sense of hope and to
begin by drawing a distinction between
stave off despair. Unscrupulous pur
spirituality and religion. Spirituality refers
veyors of stem cell ‘‘therapies’’ can easily
to a person’s search for meaning and pur
exploit this vulnerability, as is apparent in
pose in life. Religion constitutes one of
the online advertising materials used by
several ways individuals can engage in
many clinics (​Petersen and Seear, 2011​).
spirituality. Spirituality involves experien
From the patient’s point of view, placing
tial and emotional aspects of personal
therapeutic hope in a stem cell therapy
connection, inner peace, and support
may appear to be a tempting option, for
(​Anandarajah and Hight, 2001​). A person
not only might the therapy ease their
can be spiritual without being religious.
physical ailments, but it may also relieve
For example, some people find
their felt symptoms of spiritual distress.
spirituality through a connection to
For example, it appears that patient
nature, or the arts, or through their
networking through blogs and internet
association with a particular community.
 chat rooms create for some who seek
stem cell treatments a strong sense of
community and interpersonal connection
(​Murdoch and Scott, 2010​). If one of the
causes of stem cell tourism is untreated
spiritual distress, then the proper
response cannot be ‘‘more information.’’ Managing Hope and Distress and
Patients who experience spiritual distress Discouraging Stem Cell Tourism ​It is
need support, not education. easy to conceptualize the worry over
stem cell tourism as a type of

506 Cell Stem Cell ​12,​ May 2, 2013 ª2013 Elsevier Inc.
Cell Stem Cell

Forum
of discussions about the patient’s social hope and spiritual distress could lead to
consumer/marketplace problem, where
support systems. During these conver bad patient outcomes. Taking therapeutic
regulation and buyer information are the
sations, patients may feel comfortable hope and spiritual distress seriously will
usual corrective tools to battle fraud and
discussing their hopes and fears of the provide more comprehensive care for
the marketing of dangerous products. But
unknown. Physicians should use these patients and their families, and as a
this way of framing the issue is too
opportunities to identify for patients consequence of this, patients may
narrow and limiting. Patients with serious
community resources, such as hospital become empowered to resist the lure of
illnesses are not consumers shopping
pastoral care services or medical social stem cell tourism. Of course, little is
around for the latest technology. Neither
workers trained to offer psychological known about what drives patients to com
are they tourists looking for good travel
and social support. Physicians will not mercial stem cell clinics, and some
recommendations. Many are individuals
know how to manage therapeutic hope patients may even consciously hide their
in crisis. If we shift our perspective on
appropriately, however, if they are unfa intentions from their physicians (​Levine
stem cell tourism and view it from the
miliar with the goals patients are striving and Wolf, 2012​). More empirical research
humanistic standpoint of the patient’s
to achieve beyond their immediate medi is needed in this area to help inform stra
disease experience, then we will be able
cal treatment, their perceived pathways tegies to manage therapeutic hope and
to see different, additional strategies to
to these other goals, and their systems of spiritual distress. Nevertheless, if
reduce patient demand for unproven
support. Taking a spiritual assessment patients seeking commercial stem cell
stem cell therapies. If therapeutic hope
early in the doctor/patient relationship therapies are similar to most other
and spiritual distress are two important
and maintaining informal discussions seriously ill patients discussed in the
drivers of patient interest in stem cell
about the patient’s spiritual needs medical and nursing literature, then they
tourism, then these drivers need to be
(broadly defined) are important steps too should be given a chance to channel
addressed in ways that are appropriate
toward empowering patients to resist the their hopes appropriately toward courses
to them.
lure of stem cell tourism. By proactively of action that are more beneficial to
Luckily, because therapeutic hope and
engaging with patients and learning them. Anyone concerned about stem cell
spiritual distress are related, the strate
about their fears and goals related to tourism should consider supporting the
gies for clinically managing them are
disease amelioration, kind of patient care being advocated
similar. For example, in order to take the
physicians—including clini cian-scientists here.
spiritual needs of patients seriously, fam
working in the stem cell field—can gain
ily physicians have developed and advo
the knowledge necessary to recommend REFERENCES
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Cell Stem Cell ​12​, May 2, 2013 ª2013 Elsevier Inc. 507