Download Promoting new approaches for cancer care in the Middle East

symposium article
Annals of Oncology 23 (Supplement 7): vii5–vii10, 2013
doi:10.1093/annonc/mdt267
Promoting new approaches for cancer care in the
Middle East
M. Silbermann1,2*, D. E. Epner3, H. Charalambous4, L. Baider5, C. M. Puchalski6, L. Balducci7,
M. Gultekin8, R. F. Abdalla9, M. Daher10, M. R. Al-Tarawneh11 & T. J. Smith12
1
Technion–Israel Institute of Technology, Haifa; 2The Middle East Cancer Consortium, Haifa, Israel; 3The University of Texas MD Anderson Cancer Center, Houston, USA;
Bank of Cyprus Oncology Center, Nicosia, Cyprus; 5Hadassah University Hospital, Jerusalem, Israel; 6George Washington University Schools of Medicine and Public
Health, Washington; 7H. Lee Moffitt Cancer Center & Research Institute, University of South Florida, Tampa, USA; 8Institute of Public Health, Ministry of Health, Ankara,
Turkey; 9El-Salam Oncology Center, Cairo, Egypt; 10Saint George Hospital, University of Balamand, Beirut, Lebanon; 11Directorate, Non-Communicable Diseases, Ministry
of Health, Amman, Jordan; 12Johns Hopkins Medical Institutes, Sidney Kimmel Comprehensive Cancer Center, Baltimore, USA
4
introduction
Application of cancer care models originating in western
experience to developing countries is for the most part
unrealistic, as most non-western cultures view illness in terms
which differ conceptually from those prevalent in western
societies [1, 2]. In the Middle East (ME), religious observance
and the support of the community can be decisive in the
approach to therapy and suffering throughout the trajectory of
the illness [3, 4]. These practiced cultures are responsible for our
vision of the world, have profound effects, and the
representation of illness reflects this dogma, especially in truth
telling. Local experiences have lent strong evidence that different
ethnic, anthropologic, and cultural roots are often reflected in a
different view of the nature and meaning of illness and death
[2]. Novel approaches to cancer care which involve
multiculturalism ought to integrate these values [5].
An approach to the socio-cultural, ethical, and religious
aspects of life is key to consider while investigating cancer care
in the ME. For instance, in most countries in the region, pain is
regarded as an inevitable manifestation of the cancer, and
patients are often encouraged to live with it [6, 7]. In addition,
there are still debates and strongly held opinions concerning the
disclosure of the true nature of a patient’s diagnosis and
prognosis, and whether that is to the patient, family, or
combination [8–15]. This paper will explore the challenges in
Middle Eastern culture and how these differences mandate a
different approach, outline our understanding of the current
*Correspondence to: Prof. M. Silbermann, MECC, 15 Kiryat Sefer Street,
Haifa 3467630, Israel. Tel: +972-4-8244794; Fax: +972-4-8346338;
E-mail: [email protected]
state of cancer care in the ME, and make recommendations for
changes by moving to a more patient-centered model.
the current state of cancer care
in the ME
The ME includes countries from North Africa to central Asia.
This region includes a wide range of economically diverse
countries, from technically advanced countries with high-level
cancer care to countries with little or no cancer treatment
capabilities. There are large differences in population size,
wealth and health expenditure, and the availability and quality
of treatment. The relative overall cancer survival rate can be 60%
or better, but in less developed countries it is only 30% [16, 17].
the challenges of ME cancer care
the changing demographics of the region
The age distributions in these populations vary widely with
major differences in the percentage of young and old as seen in
Table 1 [18].
Hence, currently there is less cancer, but the expected change
in demographics over the next 20–30 years is likely to result in
an explosive increase in non-communicable diseases such as
cancer and heart disease. In the ME, communicable diseases are
still prevalent along with increasing burden of noncommunicable, chronic disorders as well as mental disorders
[19, 20]. Thus, any recommendations for cancer care are
tailored, to the extent possible, to different resource levels, both
among countries and in different regions or populations within
the same country [20].
© The Author 2013. Published by Oxford University Press on behalf of the European Society for Medical Oncology.
All rights reserved. For permissions, please email: [email protected].
symposium
article
Cancer is now the fastest growing killing disease in the Middle East. Accordingly, there is an urgent need to train local
health professionals: Oncologists, Palliative Care experts, Oncology Nurses, Psychologists, along with social workers,
physiotherapists and spiritual counselors on strategies for early detection, curative therapies and palliation. Professionals
in the region, along with the public, need to convince medical administrators, regulators and policymakers about investing
in education and training of YOUNG professionals, As well as those with already proven experience in cancer care.
Training is the basis for any future cancer care program, which aims at the integration of palliative care practices into
standard oncology care across the trajectory of the illness.
symposium article
Table 1. Age distribution in some Middle Eastern countries
Country
Percentage of population
<20 years old (%)
Percentage of population over
50 years old (%)
Jordan
Egypt
Israeli Arab
Cyprus
Israeli Jews
US SEER
populations
52
48
50
31
35
29
10
12
10
26
24
25
the dysfunctioning primary health care system
The health care provision in this region has undergone major
transformation during the last generation. One of the major
problems for cancer care is the lack of availability of well-trained
health care professionals. This starts in the hospitals:
oncologists, palliative care experts, psychiatrists, and is even
more pronounced, at the community level, where family
physicians are in extremely short supply; while the ones in
practice may lack the appropriate training needed to manage
cancer patients.
The current primary health care system compels cancer
patients to seek treatment at the tertiary level, even for clinical
situations such as unrelated medical problems (e.g. coughs and
colds) or easier to manage symptoms like pain, nausea,
vomiting, and febrile neutropenia, which could be dealt with at
lesser costs by the local treating physicians. The need for
traveling to a distant health care facility and the extra time spent
for each treatment often lead to a lack of adherence to the
original therapeutic regimen and decreased satisfaction levels.
cultural beliefs that hinder best cancer care
Additional factors impeding early presentation and treatment of
cancer patients relate to cultural, religious, and family opinions
and attitudes. In terms of prevention and early diagnosis, there is
a lack of awareness regarding early symptoms of the disease, its
prevention, and the benefit of an early diagnosis. Alongside the
fear and stigma associated with cancer in the ME, these factors
often result in late presentation with advanced disease [21]. For
instance, females with breast cancer might hesitate to disclose
their illness to their families in fear of social consequences. A
further barrier to the uptake of preventive services among some
disadvantaged groups is the ‘fatalistic’ approach to life and death;
believing that one has little control or ability to influence
outcomes [22]. Yet, spiritual and religious beliefs can be a
resource of strength for patients, since spiritual distress, i.e.
despair, conflict on religious beliefs, hopelessness, should be
diagnosed and treated [23]. Finally in terms of treatment, there
are inadequate numbers of female professional caregivers, a fact
which restricts female patients’ access to the health care system.
For many populations in the region, their cultural beliefs
entail the concept of acceptance of ‘God’s will’, which may
prevent patients from seeking care, especially those suffering
from a terminal illness. Finally the popularity of alternative
practices and ‘religious treatments’ hinder the appropriate
access to mainstream medical care [14].
vii | Silbermann et al.
Annals of Oncology
manpower. One approach to better care delivery when the
number of physicians is inadequate is to allow non-physicians
such as advance practice nurses to provide care. For example,
Great Britain has 27.4 physicians for every 10 000 population,
Unites States 24, Iran 8.9, Iraq 6.9, Oman 19, Pakistan 8.1,
Yemen 3, Morocco 6.2, Sudan 2.8, Syria 15, and Lebanon 22
[22]. With very few physicians, better utilization of physicians’
time is essential. Training non-physicians to perform tasks that
do not require a physician’s training would result in physicians
being able to dedicate time to provide more appropriate care.
Many patients treated by nurses were found to be more satisfied
and no less healthy than those treated by physicians [12]. In the
UK, consultant nurses have even been given prescribing rights,
within specific areas, where their competency has been assessed.
Middle Eastern countries, along with other developing
countries, should reallocate resources, whereby nurses and other
health care workers will put their training to better use.
Physicians meanwhile will devote their time to more complex
tasks requiring more specialization and expertise. In this way,
physicians may lose some of their monopoly in health care
delivery but patients will clearly win [24].
limited resources worsen cancer treatment and outcomes.
Limited budgets and health care expenditure per patient at a
time when worldwide there is an escalation in the cost of new
chemotherapy and molecular-targeted agents will make the
current situation and disparities worse. Modern treatment
approaches are dictated by the molecular diagnosis and the
identification of damaged genes that are responsible for the
particular cancer in the individual patient. Accordingly, the cost
of new chemotherapy agents such as cetuximab or bevacizumab
more than $100 000 a year, and quality-adjusted life year ratios
of over $500 000 per year make these drugs unattainable, except
for the very wealthy.
Limited available cancer treatment resources in both
chemotherapy and radiotherapy impact timely and good quality
oncology care. Radiation therapy (RT) contributes to 40% of
cancer cures, and is also a very cost-effective way of palliation of
cancer symptoms in patients with advanced or metastatic
disease. A major concern regarding radiotherapy availability is
that the rise in cancer incidence is occurring in different parts of
the world, like the ME, where the availability of RT is quite
limited [18]. It is estimated that in 2020, ∼70% of the world
cancer incidence will occur in countries of moderate or low
income, and that these will typically be diagnosed at an
advanced stage with most patients in need of palliative
treatment [25, 26]. So while in developed countries we are
debating about the use of new advanced RT techniques (i.e.
proton beam, IGRT, IMRT, and stereotactic RT), in developing
countries, the debate is who gets treated and who does not.
There is therefore an urgent need for an expansion of RT
facilities to avoid circumstances where patients are denied access
to RT treatment [26].
Overall, palliative care facilities, in most countries in the ME,
are nonexistent or very limited [27, 28]. Palliative care is
relatively inexpensive and is always included in budgets
approved by the World Health Organization, but requires
special training which may not be available in the region.
The consumption of opioids in the ME is among the lowest in
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the world (Table 2). Reasons for this situation relate to
accessibility and availability, but are also educational and
cultural. A practical communication question faced by
health care providers is ‘How should I respond to patients
who avoid analgesics for fear of addiction?’, for religious or
other reasons. For instance, asking a patient to ‘Tell me more
about your concerns’ and then listening intently without
trying to ‘convince’ or ‘fix’ is highly therapeutic. The patients’
narrative, their expression of fears, hopes, and dreams, presents
the caregiver with empathic opportunities. If the patient says,
‘I am afraid I will become addicted’, just acknowledging that
fear with empathy by saying ‘That must be a scary thought’ is by
itself highly therapeutic. Such an empathic strategy is much
more healing and establishes better rapport and trust than
trying to convince a patient to be ‘compliant’, even if doing so is
seemingly in his/her best interest.
different cultures impacting on the practice of oncology—
exploration of the social contract. Application of health care
models that originated in western countries to the ME
world is unrealistic due to the fact that different cultures
appraise health and disease differently. This dissimilar
pragmatic appraisal of health and disease originates in
the individualistic versus collective concepts that are
rooted in he different cultures: West versus non-West,
respectively [28]. As a result of the collective approach in
Middle Eastern societies, patients receive substantial social
support, from both the family members and the
surrounding community.
One of the big challenges facing physicians in a
heterogeneous population of patients is the development
of their own cultural competency. This is aimed at helping
them develop communication skills in situations when
patients are of diverse backgrounds and which is especially
important when dealing with a life-threatening illness, such
as cancer. A key issue refers to disclosing a serious diagnosis
and prognosis across different cultures. This requires an
understanding of diverse cultural beliefs in relation to
collusion and potential other conflict issues. In practice, this
allows the trained physician to ask the right questions and
thereby elicit preferences regarding the disclosure of
information from each patient and often a number of different
family members regardless of culture, and to negotiate
solutions to the various dilemmas and conflicts that may arise
in relation to the patient and his/her family [27]. Basically,
cultural issues are largely stylistic more than substantive [29];
Table 2. Opioid consumption in the Middle East (ME)
Country
Milligrams/person/year (mg/capita)
United States
Israel
Turkey
Egypt
Jordan
Cyprus
73.7
4.8
0.095
0.18
1.88
2.20
From Opioid Consumption Maps—morphine, mg/capita, 2010, http://ppsgproduction.heroku.com/.
Volume 23 | Supplement 7 | October 2013
yet, in almost all Middle Eastern countries, culture plays a key
role in health care, particularly in palliative care, because it
affects the ways that individuals comprehend autonomy.
Moreover, culture plays a significant role in how patients and
family make meaning out of illness and suffering, expression
of pain, hopes, and views concerning death [14, 30–33]. In
the United States, truthful conversations that acknowledge
death help patients understand their curability, and do
not squash hope or cause depression [34]; while open
communication on death and dying and reflective listening,
even in the presence of disagreements, are the venues of
healing [35]. We all realize that while death is universal, how
we die is tailored by our individual culture and spiritual
heritage. Yet, even in the United States, when cancer patients
do open up about their sorrows, fears, or anger, the
discomfited physicians doused the discussion three-quarters
of the time [36]. In order to improve the state of art in
Middle Eastern societies, much more training and education
is needed, both among professionals and the public at large.
While current western/US medical culture places a high value
on individual autonomy, and therefore full disclosure of
information to the patient, this is not universal, and is not
shared by the majority of the populations in the ME, where the
majority of physicians see a positive value inherent in the
nondisclosure of a diagnosis and of a terminal prognosis. This
study is now almost 20 years old! In Cyprus, which is closer to
the western values and culture than most other Middle Eastern
countries, 79% of patients said that they want as much
information as possible, while 72% wanted to know their
prognosis. Regarding the control of information, 62% of
patients wanted to know everything and for themselves to
decide how much their family would know, while 19% wanted
their family to know everything and the family to decide how
much the patient would know [37].
Stereotyping and embracing assumptions on information
preferences by ethnicity should, however, not be used in clinical
practice, as in a significant proportion of cases as shown above,
the assumption is going to be wrong, and patients are either
going to be denied information they wished to know, or they are
going to be given information they did not wish to have. Some
of these profound differences are shown in Table 3.
Table 3. Different approaches due to cultural differences between United
States and Middle Eastern practice
Disclosure of
information
to patient
Who decides on
treatment?
Role of doctor
in guiding
decisions
Patient expectations/
demands
US
Middle East (ME)
Almost universal in
the past 10 years
Usually not
Patient
Family
Facilitator
Family knows best
Wants to be in control/
demands all possible
treatments
Expects family to be
in control/less
demanding may be
fatalistic/‘God’s will’
doi:10.1093/annonc/mdt267 | vii
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Therefore, it is important to ask, and not to assume,
as to what patients and their families would like to know,
using the important principle of ASK, TELL, ASK: ‘Ask’ –
What do you want to know about your illness? What do
you know about your illness? ‘Tell’—if given permission,
tell them in understandable language. ‘Ask’—can you tell
me what you understand about the situation? [33] We
have formalized this approach to be done at each ‘transition
point’ when the intent of treatment changes, as shown in
the text box.
Go over, at each transition point (not just the first or last):
(i) How much do you want to know about your cancer?
(ii) What do you know about your cancer?
(iii) Who would you like to include in discussions about
your care?
(iv) Would you like me to write down the important points?
(v) What is important to you?
(vi) What are you hoping for?
(vii) Now that we have discussed this, what is your
understanding of your situation? (as opposed to ‘do you
have any questions?’)
(viii) Who are your other doctors, so that I can
communicate with them?
Taking all of the above into consideration, what would be the
appropriate strategy to requests for nondisclosure? Asking a
family member to ‘Tell me more about your concerns regarding
telling your mother she has cancer’; such a question allows the
family member to be heard and opens up a world of empathic
opportunities. The patient’s son is most likely to reply
something like ‘I am concerned by mother will not be able to
handle the stress of knowing she has cancer. I am afraid she will
simply give up.’ He may also reply ‘I am her oldest son, so I have
a responsibility to look out for her well-being’. One should resist
the temptation to argue about patient autonomy, privacy laws,
and other regulations; and instead recognize the patient’s and
her family’s fear and respond accordingly: ‘I can understand
how stressful this must be for you and your family. You
obviously love your mother a great deal’. In this case, the
patient’s son is not literally saying ‘Do not tell her’, but is saying
in essence, ‘I love my mother, so please be sensitive about how
you speak to her. Please show her compassion’. Finally,
reassuring her son by sincerely saying, ‘I promise to treat your
mother with great respect and compassion, just as I would my
own mother.’ Hence, the oncologist’s ear must hear the voice of
the son’s heart.
personalized/individualized medicine—caring for the whole
patient. person centered cancer care in the middle east. A
handicap in applying more western-style cancer care is that
physicians in the region are not well aware of the philosophy,
components, and advantages of the person-centered model of
patient-physician consultation.
Underlying this approach are differing, culturally shaped
views of patient autonomy, the role of the family and the
physician-patient relationship. If personalized medicine is
vii | Silbermann et al.
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arising to be the desired practice, physicians, including
oncologists, need to learn to respect patients’ autonomy within
other cultures which entail adopting ethical values such as
fidelity and association to family and community over selfdecision making. Moreover, the treating physicians should not
make assumptions about individual patients and their health
beliefs based on ethnicity, race or religion, and be careful not to
prejudge [38].
In the ME, unlike in the United States and other western
countries, cancer is still associated with a stigma, and therefore
patients and their families are for the most part not told their
diagnosis. By referring to the ‘whole patient’, one ascribes the
growing public and professional awareness of the potential for
cancer and its treatment to have profound effects on many
aspects of life. The latter are also addressing the effects that
cancer and its treatment have on the mental status and
emotional well-being of patients, their family members, and
their caregivers [1, 39]. This has prompted the American
Society of Clinical Oncology (ASCO) to publish a statement
recently with the title’ Individualized Care for Patients With
Advanced Cancer’ to suggest that care for patients with
advanced disease, should include an individualized assessment
of the patient’s needs, goals, and preferences throughout their
illness and that beyond disease-directed therapy, there should be
attention to symptom management and attention to quality of
life [40]. They further highlight that realistic conversations
about prognosis, the potential benefits and limitations of
disease-directed therapy, and the potential role of palliative care,
occur late in the course of illness or not at all, and that this
needs to change.
Such conversations in the US/western practice occur in <40%
of patients with advanced cancer [41, 42] ,and this probably
relates to the fact that disclosure of such sensitive information is
very stressful for oncologists even in western societies [43, 44].
Yet the Coping with Cancer Study [40] suggests that having
EOL discussions is associated with no increase in depression for
patients and a decrease in aggressiveness of care, which is
associated with better patients’ quality of life and decreased
depression for caregivers [44]. More recent evidence from two
randomized trials shows that palliative care alongside usual
oncology leads to less depression and anxiety [45].
developing the physician–patient interrelationship (therapeutic
alliance). A first step in trying to bridge over such conflicts is
to build a trustful relationship between the involved parties. To
that matter the physician needs to spare the time to listen to the
patient’s and the family’s story, which is so essential in trying to
establish a positive and empathic relationship. If personalized
medicine is the current goal, then the physician needs to devote
the necessary time to go over these issues very carefully. In
breaking bad news, the oncologist faces delicate situations which
require patience, understanding and readiness to negotiate with
his/her patient and family. It is, therefore, imperative for the
oncologist to understand that respect for patient values and
beliefs can mean that a patient is not directly told his or her
diagnosis and prognosis. Practicing medicine, generally, and
oncology, in particular, in the ME, needs the competency to
navigate how to practice good medicine, and concomitantly,
respect the way decisions are made in different cultural settings
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[31]. Under such circumstances it is possible to build this
patient–physician therapeutic alliance, a relationship based on
the trust and respect, which is an important factor determining
patients’ Quality of Life, especially towards the End of Life [40].
One of the more important tools to promote ‘whole patient’
care and to address these difficult communication scenarios is to
provide training in communication skills for oncologists. The
fact that the ‘whole patient’ approach has not as yet taken root
in the ME is because of the stigma attached to mental illness
and psychological problems at large, and those associated with
cancer, in particular.
A number of systematic reviews and meta analyses have
shown that Communication skills Training (CST) improves
communication skills of Oncologists [46]. Furthermore,
effective communication has been associated with improved
psychological functioning of the patient, adherence to
treatment, and increased quality of life and satisfaction for the
patients, while ineffective communication contributes to
clinicians’ stress, lack of job satisfaction and emotional burnout,
and results in patients’ confusion and increased psychological
distress [46].
Throughout history, families have played a crucial role in the
care of critically and terminally ill patients. Unilateral decisionmaking models based on physician paternalism were the
common practice in Middle Eastern countries and societies, but
we see this changing to a more person-centered approach as it
did in the West. The truly patient-centered care requires a new
paradigm for shared decision making that always incorporates
‘Ask, Tell, Ask’ but realizes the patient may defer to the family.
Better communication may decrease family stress and help them
to cope with the situation. Best practices ought to include
prayers and adherence to cultural traditions. Overall, including
and embracing the family as an integral part of the multipleprofessional oncology team are essential for the best care of
cancer patients. Moreover, patients with cancer in more and
more developing countries are no longer satisfied with
nondisclosure and wish to be more respected in their autonomy
and right to take an active role in decision making about their
care [47]. There is currently a reappraisal of the notion of
individual autonomy, concomitant with a growing trend toward
‘relational autonomy’ [47]. The latter term refers to an
understanding of autonomy in light of family and community
ties, taking into account individual, cultural, and socioeconomic
factors that together may affect our decision-making processes.
Within the new paradigm, the oncologist still needs to learn
how to keep his direct connection in the best possible way with
his patients while including the family caregivers [48].
While practicing patient-centered oncology, it became
evident that while using a more centered communication style,
i.e. eliciting and validating patients concerns, the oncologist
enables a more in-depth discussions on prognosis with his
patients [49–53]. Such communication is the essence of patientcentered care.
conclusion
The ME is currently involved in promoting its oncology and
palliative care services both at the hospital level and in the
community [15, 16]. The existing needs have been established,
Volume 23 | Supplement 7 | October 2013
and the time has come whereby recommendations for change
are put in place. The question that we face is as follows: in
realistic terms what would be the best feasible plan to start
bringing about a change in the attitude of the professional
caregivers in light of the new paradigm of personalized care for
cancer patients. The issue of modeling a practical intervention
strategy has become a valid issue. How are we going to proceed
from here while recognizing the importance of local sensitivities
toward any alteration in practices that have been in use for
decades? We fully realize that each country in the region cares
for its own and unique cultural traditions, and would like to
preserve them at times of changes.
funding
Supported in part by the Center of Global Health, National
Cancer Institute (NCI), National Institutes of Health, Bethesda,
MD, USA, by the Turkish Ministry of Health, Ankara, Turkey,
by the American Society of Clinical Oncology (ASCO)
Alexandria, VA, and the International Union for Cancer
Control (UICC), Geneva, Switzerland.
disclosure
The authors have declared no conflicts of interest.
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Volume 23 | Supplement 7 | October 2013