Practice Guide in Psycho Oncology

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Clinical practice guide in psycho-oncology

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Cognition, Brain, Behavior. An Interdisciplinary Journal
Copyright © 2016 ASCR Publishing House. All rights reserved.
ISSN: 1224-8398
Volume XX, No. 4 (December), 283-308

CLINICAL PRACTICE GUIDE


IN PSYCHO-ONCOLOGY
Florina POP 1*, Roxana POSTOLICA 2, Corina LUPĂU 3,
Csaba László DÉGI 4
1
“Ion Chiricuţă” Institute of Oncology, Cluj-Napoca, Romania
2
Regional Oncology Institute,Iasi, Romania
3
Oncology Center, Oradea, Romania
4
Babeş-Bolyai University, Cluj - Napoca, Romania

ABSTRACT

In the Romanian public medical system, psychosocial assessment is not integrated


into routine oncological treatment and care. According to APSCO research data,
cancer distress is recorded in about half of the Romanian cancer inpatients, the
maximum admissible level. In this context, creating a clinical practice guide in
psycho-oncology is one of the first actions needed to be taken. This guide
corroborates clinical experience from within the Romanian oncology system,
psychosocial resources available to Romanian professionals in cancer care and
best practice recommendations from psycho-oncology literature. The intervention
scenarios presented here are consistent with care requirements implied by the
oncology hospital system in Romania. The therapeutic act involves three structural
stages (initial, intermediate, final) of psycho-oncological intervention, several
therapeutic targets and cancer-specific intervention techniques being presented in
detail for each stage. A number of best practices for doctor-patient communication
and psycho-oncological intervention, as well as recommendations for a
comprehensive caretaking into account the patients’ needs in order to maintain
continuity and quality of life during hospitalization and rehabilitation have
resulted from this line of action.

KEYWORDS: cancer, distress, guide, psycho-oncological intervention,


psychosocial support, Romania

*Corresponding author:
E-mail: csabadegi@gmail.com
284 F. Pop, R. Postolica, C. Lupău, Cs. L. Dégi

INTRODUCTION
Patient care in the oncological system undergoes a major paradigm shift from
disease management to a patient-centered approach, increasingly more attention
being paid to psychosocial issues such as cancer distress, quality of life, patients’
rights and empowerment, co-morbidities and survival. Negative phenomena in the
life of cancer patients amplify each other, generating overlapping effects with a
strong psychosocial impact on the quality of life. The World Health Organization
defines quality of life as the individuals’ perception of their position in life in the
context of culture and value systems in which they live and in relation to their
goals, expectations, standards and concerns(WHOQOL, 1995). For cancer patients
improving quality of life is as important as survival or the prolongation of life. Most
psycho-oncology studies view quality of life as an independent prognostic factor of
disease progression and survival odds (Di Maio & Perrone, 2003).
Psycho-oncological care is part of an integrative evidence-based approach
addressing the psychosocial needs of the cancer patient. "Cancer care for the whole
patient" is an interdisciplinary approach including psycho-oncological interventions
that is being centered on elements of strict particularity for each single case. Such
typology actually gives the measure of therapeutic effectiveness (Bultz & Carlson,
2005)
As part of interdisciplinary medicine, psycho-oncology demands
communication and co-operation between medical and non-medical professionals,
aiming to derive increased patient satisfaction by promoting patient empowerment
and greater participation, responsibility indecision-making regarding the treatment
and compliance to the therapeutic program.
There is growing evidence that a multidisciplinary approach improves the
level of care provided to the oncology patient, exerting beneficial effects on the
professionals of the multidisciplinary team as well. Among the benefits of a
multidisciplinary approach to cancer patient care one can mention improvements
made by development of a treatment plan in line with the patient’s needs and
implementation of evidence-based best practices, increased survival rate, better
chances to receive care in line with clinical guidelines, including psychosocial
support, increased access to information - particularly regarding psychosocial
support, increased satisfaction regarding the level of care and, finally, professional
development and improved emotional wellbeing on behalf of the professionals
involved in the multidisciplinary team (Sainsbury, Haward, Round, Ricler, &
Johnston, 1995; Gabel, Hilton, & Nathanson, 1997; Richardson, Thursfield, &
Giles, 2000; Changet al., 2001; Hawardet al., 2003).

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This guide is addressed to psychosocial specialists working with cancer


patients. It aims to provide an easy to use guide in a simply to adopt form for every
specialist.
At the moment there are a number of intervention protocols, particularly in
the cognitive-behavioral paradigm, but one of the problems encountered in their
implementation is due to their format (evaluation and psychological intervention
meetings structured over a longer period of time) as such model is not readily
appropriate in some medical interventions, more so in an oncological context
(considering all the aspects implied by a crisis situation, i.e. preoperative or
postoperative psycho-oncological intervention).
In designing and adapting this guide we considered the resources currently
available in the Romanian medical system, recommendations of the psycho-
oncology literature - psychosocial care standards recommended by the International
Society of Psycho-Oncology (IPOS) in particular -, and our clinical experience in
oncology.
We tried to conceive this guide in a manner designed to be useful for
specialists with various levels of experience.
The first part of the guide refers to the definition and rationale of
psychosocial care in oncology, the second addresses the communication process
engaged with the cancer patient, while part three covers screening, psychosocial
assessment and practical psycho-oncological interventions during each step of the
curative oncological treatment, while part four provides final recommendations on
psychosocial care.
For practical effectiveness, the interventions included in this guide are
presented in short and clear sequences. The proposed intervention modalities are
consistent with hospital care requirements and resources available to Romanian
psychosocial specialists in the field of oncology.
An important aspect would be that, when the effective implementation of
the intervention is prevented by strong patient resistance induced by personality
traits or other issues of palliative nature, adjustments in the clinical evaluation and
greater adaptation of the intervention package to patient needs should be made in
consultation with colleagues more experienced in the field of psycho-oncology.
Being a highly sensitive issue, duration of the psycho-oncological
interventions was established based both on research data regarding the optimal
length of the therapeutic contact and on the resources of time available considering
hospitalization routines imposed to the cancer patient requesting the intervention.
The duration of a meeting should be established based on how much the physical
health of the patient is affected (differing for a patient hospitalized in an intensive
care unit compared to a patient following radiation therapy treatment).
Recommendations are a maximum of 30 minutes for a supportive intervention
involving a patient on respiratory support in the intensive care unit, 50 to 90
minutes for a first meeting with a patient undergoing radiation therapy treatment

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286 F. Pop, R. Postolica, C. Lupău, Cs. L. Dégi

and a first or last meeting to provide psychological support to a certain patient, such
as when he/she is an outpatient or is about to continue treatment in another
oncology clinic.
We do not pretend that a cognitive behavioral intervention is the only
effective approach (although its effect was most rigorously investigated), but we
recommend using the principles of cognitive-behavioral therapy adapted to cancer
patients in a synergic form based on a good therapeutic relationship.
In brief, we expect that the contents of this guide provide useful
recommendations for psycho-oncological intervention on patients hospitalized for
curative treatment of cancer. It helps when implemented with tact, care, clinical
judgment and responsibility.

Defining the scope and rationale of psychosocial care in oncology


According to Holland et al. (2010, p. 10), "Psycho-oncology is defined as a
subspecialty of clinical oncology relating to two dimensions: 1) psychological
reactions of cancer patients and their families in all stages of the disease; and 2)
the psychological, social and behavioral factors that impact on cancer risk and
survival".
Based on the APSCO quantitative research studies in 2006 and 2013/2014
involving Romanian cancer patients (N = 1220) and a mixed method (quantitative
and qualitative)research in 2014 involving Romanian specialists in cancer care, we
conclude that in present day in Romania cancer is still a significant source of
vulnerability and an unresolved psychosocial burden for both patients and
professionals who provide psychosocial support for this category of patients (Dégi,
2009; Dégi, 2011; Dégi, 2013; Dégi & Cîmpianu, 2014; Kállay & Dégi, 2015;
Faludi & Dégi, 2016; Dégi, 2016a,b,c). Data concerning the non-disclosure of the
cancer diagnosis to the patients themselves, as derived from the APSCO studies,
show that cancer non-disclosure rates have halved during the 7 years following
Romania’s accession to the European Union, but the psychosocial distress remained
high while the cancer patients’ quality of life, although improving, remained at a
level below internationally accepted values (Brucker, Yost, Cashy, Webster, &
Cella, 2005). These results justify current efforts of Romanian professionals to
promote psychosocial support for cancer patients on the health minister’s priority
agenda.
The results of those studies indicated that 1 in 5 (19.7%) Romanian cancer
patients suffered from moderate depression, while 27.7% reported symptoms of
severe depression. Also, 47.2% of the patients had accumulated severe anxiety
symptoms and more than half (50.1%)admitted they needed significant help. Data
revealed that a high percentage of cancer patients presented symptoms of significant
psychosocial distress, highlighting some gender differences in this regard. Certain
groups - women, elders, lower educated and single/divorced/widowed patients -

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reported significantly higher distress levels and lower levels of psychosocial well-
being. Inability to work, reported by 40% of the cancer patients, correlated with
tiredness, problems faced in meeting their needs, a poor physical and sedentary (i.e.,
lying in bed) condition (Dégi, 2014a). Data also suggested that in Romania work
and illness-related issues should also be addressed together since the moment of
cancer diagnosis in order to comprehensively evaluate the impact of cancer on work
ability. Regarding the psychosocial wellbeing and quality of life, no significant
differences were found between patients undergoing cancer therapy and those in
rehabilitation or palliative care. Regardless of the evolution stage, in Romania the
cancer itself remains an important factor of vulnerability and continuous
psychosocial burden for both patients and specialized oncology service providers.
Failure to timely apply appropriate supportive psychosocial measures
results in a substantial worsening in the quality of life (Parker, Baile, Moor, &
Cohen, 2003), increased pain intensity (Spiegel, Sands, & Koopman, 1994),
reduced survival odds (Watson, Haviland, Greer, Davidson, & Bliss, 1999), and
increased suicidal risk (Hem, Loge, Haldorsen, & Ekeberg, 2004). Conceiving that
they become a burden to their family (Pitceathly & Maguire, 2003), patients begin
to give up treatment (DiMatteo, Lepper, & Croghan, 2000), thus chemotherapy
loses its effectiveness (Walker et al., 1999) and hospitalization time increases
(Prieto et al., 2002) entailing higher costs and hindering psychosocial rehabilitation.
Quality care in cancer have to integrate patients’ psychosocial needs in the routine
treatment. Stigma is not a specific problem of the Romanian oncology system, but it
remains a significant barrier against integrating psychosocial support in the
internationally applied scheme of cancer treatment (Holland, Kelly, & Weinberger,
2010).
Psychosocial support for cancer patients addresses the psychological,
social, existential, spiritual and other needs facing cancer-affected persons
throughout the cancer trajectory, including the assessment of personal experiences
concerning treatment, rehabilitation, survival and palliative episodes.
The APSCO research project in 2014 assessed from the perspective of
oncology professionals the situation concerning unmet psychosocial needs of
Romanian cancer patients during treatment. It indicated that the most pressing
problem was the absence of standardized assessment tools and evaluation protocols
regarding distress among Romanian cancer patients. Adequate supervision at work,
instruments and training courses for delivering psychosocial support to cancer
patient and their families were found to be professional priorities.
Psycho-oncology is currently in a phase of exploring its possibilities in an
attempt to surface the Romanian medical system. Psychosocial assessment of
cancer patients is not part of routine oncologic treatment and so there is no
possibility to detect mental health problems and treat psychosocial crises faced by
cancer patients. It is estimated, that only about 5% of the patients actually receive
some kind of professional psychosocial support (Dégi, 2016a).

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Given that presently Romania cannot develop specialized human resources


(i.e., psychosocial professionals such as psycho-oncologists and/or oncology social
workers), this clinical practice guide in psycho-oncology aims to assist
professionals in their clinical decisions and improve services they provide in the
healthcare system.

Communication with cancer patients


The Romanian bill on patients’ rights (Law no.46/2003, chapter II, art. 4-12.) states
that any patient has the right to be informed, to decide whether and the extent to
which he/she wants to be informed and whether relatives and/or friends of the
patient should be informed about developments in the medical investigation,
diagnosis and treatment. Although there is an ethical, moral and legal right of the
patient to be truthfully informed, a study conducted within the Oncology
Department of the Tg. Mureş University of Medicine on a group of physicians from
various specialties concluded that in the current medical practice communication of
the diagnosis and prognosis regarding a cancer patient is most frequently directed
towards the patient’s family members (Lupșa & Gagyi, 2003). Failure to inform the
patient about his/her diagnosis and prognosis might bear consequences in the
compliance to treatment or communication with the medical team and could raise
certain ethical problems considering that the patient seeking treatment has to à
priori sign a consent form implying knowledge of the diagnosis and prognosis.
Also, the patient’s psychological preparation in view of discussing diagnosis and
treatment options is part of the early doctor-patient interaction. This psychological
preparation and education includes an analysis of individual, family and social
resources available to the patient, identification of the psychosocial factors that may
interfere with decisions regarding the medical process, as well as the patient’s own
perception regarding his/her health state.
Good communication between the cancer patient, family members and the
interdisciplinary team helps improving the wellbeing and quality of life of the
patient. Communication on the patient’s concerns and decision making is equally
important in all therapy and supportive stages. When important decisions need to be
taken (i.e., learning about one’s diagnosis, decisions about new treatment and/or
care options) communication plays a crucial role, being instrumental in achieving
the medical and psychosocial objectives.
Effective communication during treatment and care stages leads to positive
results as patients are more satisfied with the quality of care they are benefiting
from. Feeling that by being better informed they exert greater control over the
disease and treatment options, they clearly are more compliant to treatment (NCI,
2016).
However, in Romania there is no valid protocol regarding communication
of the cancer diagnosis. In this context, the APSCO questionnaire-based research in

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2013/2014 (N = 800) found out that 92% of the respondents actually knew their
diagnosis, while 8% of the respondents were not aware of being diagnosed with
cancer. Cancer patients not informed about their diagnosis were mainly elderly
male rural residents with lower education levels in advanced stages of the disease.
Not only were patients unaware of their cancer diagnosis more depressed, more
stressed and anxious than informed patients, but they also acutely felt they needed
help (Dégi, 2010; Kállay, Pintea, & Dégi, 2016). These data confirm in a unified
and consistent manner the psycho-social vulnerability of cancer patients uninformed
about their diagnosis.
There is no universally-applicable way to communicate full medical truth
to cancer patients. Several methods have been tested, sometimes used in
combination, such as the terminology method, the oblique method, the statistical
method or the preferable patient-centered method. Communication in this last one is
customized taking into account patient’s personality, coping mechanisms employed
when faced with a problem, psychosocial and family resources, specific details that
the psycho-oncologist can provide to the medical team in charge of the patient.
Accurate information concerning the disease and life expectancy helps the patient to
form a realistic rather than pessimistic or catastrophic picture of his/her situation
providing that the information is adapted to the patient's level of understanding.
Communication should be focused as much as possible on the present, on "what can
be done now", today, tomorrow, in the near future, such an approach being useful
both to the medical team in charge of the patient, which manage well the "now"
situations, and to the patient, who will be thus helped out of the multilayer chaos
induced by the cancer diagnosis (Holland & Zittoun, 2012). Orientating
communication on the "what happens now", shifting from the "tell the truth" to
"make the truth" paradigm, is a new perspective of patient-multidisciplinary team
communication that can positively influence both the patient-medical staff relation
and the perceptions, attitudes, education and information levels of the general
public on cancer (Surbone, Zwitter, & Stiefel, 2012).

Screening and evaluation of psychosocial distress in cancer patients


The National Comprehensive Cancer Network in the United States (NCCN) defines
distress as an unpleasant emotional experience of psychological, social and/or
spiritual nature extending from normal feelings of vulnerability, sadness and fearful
concerns to serious problems, disorders such as depression, anxiety, panic, social
isolation and spiritual crisis (Holland & Weiss, 2010; Kállay & Dégi, 2014a,b).
Appropriate psychosocial support for cancer patients can be provided only
when cancer distress will come to be rated as the 6th vital sign in accordance with
the International Psycho-Oncology Society (IPOS) standards on quality psycho-
oncological care. Distress, emotional and social suffering felt by the patient
(depression, anxiety, adjustment disorders and stigma) are the 6thsign besides body

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temperature, blood pressure, pulse, breathing and pain (Bultz & Carlson, 2005;
Holland & Bultz, 2007). The assumption and application of this international
standard in Romania presents challenges and emerging opportunities to oncology
specialists (i.e., physicians, nurses, psycho-oncologists, oncology social workers,
priests etc.), which generally are not well enough trained in their core curricula in
regard to psychosocial and communication aspects of cancer.
Romanian specialists currently recommend that cancer distress should be
assessed and monitored at least in patients who request or are recommended for
psychosocial support.
Beyond the semi-structured clinical interview, assessment of the emotional
state is indicated to be conducted with screening instruments for emotional distress
such as the Distress Thermometer (DT) (Dabrowskiet al., 2007; Gil, Grassi,
Travado, Tomamichel, & Gonzalez, 2005; Hoffman, Zevon, D'Arrigo, & Cecchini,
2004; Holland & Bultz, 2007) and the Emotional Thermometers (ET) tool
(Mitchell, 2010; Mitchell, Baker-Glenn, Granger, & Symonds, 2010).
If the patient engaging the process of psychological intervention is facing a
surgical intervention (usually implying up to 8 days of hospitalization) or
chemotherapy (one to five days of hospitalization), then we know that time
resources at our disposal are limited. In these conditions screening tools and the
semi-structured clinical interview may be sufficient to create an overview and start
psycho-oncological intervention.
If the patient is hospitalized for radio-therapeutic treatment (3-8 weeks of
hospitalization) then several other psychological evaluation instruments can be
added to the screening tools used for emotional distress (DT and ET), including the
Beck Depression Inventory BDI-II (Beck, Steer, Ball, & Ranieri, 1996; Beck, Steer,
& Brown, 1996), rating scales for anxiety and depression such as the Generalized
Anxiety Disorder Assessment (GAD-7) (Spitzer, Kroenke, Williams, & Löwe,
2006) and the Patient Health Questionnaire (PHQ-9) (Kroenke & Spitzer, 2002), the
Endler scales for the multidimensional assessment of anxiety (Endler, Edwards &
Vitelli, 1991), the Brief B-COPE Questionnaire (Carver, Scheier, & Weintraub,
1989), the revised Impact of Events Scale (IES-R) (Weiss & Marmar, 1997), the
Functional Assessment of Cancer Therapy (FACT) modules (Cellaet al., 1993) used
to assess the quality of life, the General Attitude and Belief Scale (GABS) (Lindner,
Kirkby, Wertheim, & Birch, 1999) for assessing irrational beliefs any other
personality assessment tests or instruments required to effectively institute and
direct the psycho-oncological intervention.
One can also set up a psychosocial assessment package by consulting the
Psychosocial Evaluation of Cancer Patients module which can be accessed (text and
audio format) in Romanian within the IPOS Curricula.1

1 http://docs.ipos-society.org/education/core_curriculum/ro/KochMehnert_assess/story.html

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In Romania, where the annual rate of newly diagnosed cancer cases is


relatively high and the number of psychosocial professionals is very low, an
extremely useful existing resource for patients and their families, caregivers and
health professionals is the APSCO application2.This is a computerized evidence-
based screening tool allowing the automated quantification of distress. It serves for
self-guided emotional screening, monitoring and finding resources.
Not only is the tool extremely useful for screening and monitoring the
distress level, it can also be used for monitoring the whole process of psycho-
oncological intervention. The patient who has this application installed can monitor
his/her distress since the beginning of the first meeting. This activity can be
continued in the intervals between hospitalization or treatment sessions (e.g.,
between appointments for psychological evaluation or chemotherapy sessions).
Monitoring distress using the APSCO application provides systematic feedback on
the status and needs of the oncology patients, facilitating the effectiveness of the
entire process of psycho-oncological evaluation and intervention.
Afterwards, the International Psycho-Oncology Society (IPOS) proposes
endorsement of following statements on standards and clinical practice in cancer
care3:
1. Psychosocial cancer care should be recognized as a human rights issue.
2. Quality cancer care must integrate the psychosocial domain into routine care.
3. Distress should be measured as the 6thvital sign after temperature, blood
pressure, pulse, respiratory rate and pain (Travado et al., 2016).

Psycho-oncological interventions recommended in every stage of curative


cancer treatment
Psychotherapy and psychosocial intervention with a cancer patient is once and
again a unique challenge. The purpose of a clinical practice guide in oncology is to
improve the quality of services offered by psychosocial specialists in Romania. This
guide was conceptualized based on an analysis of the literature data, including
similar guidelines made available by the International Psycho-Oncology Society
(IPOS), and taking into consideration the currently existing local resources,
including the professional experience of the Romanian psycho-oncologists.
The main aspects highlighted in literature that have proven their usein
clinical practice relate to: a) providing a therapeutic environment where the patient
can safely expose his/her concerns; b) building (of) a therapeutic relationship that
should bring a sense of security and stability in the patient's life, c) centering on a
flexible theoretical paradigm to facilitate adaptation to changes that may occur in a
hospital environment (Holland et al., 2010).

2 http://www.psychooncology.ro/aplicatia-apsco/
3 http://www.wpanet.org/detail.php?section_id=7&content_id=1087

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The types of psycho-oncological interventions can be customized to


address: 1) persons recently diagnosed with cancer; 2) patients in the active phase
of treatment, 3) patients in total/partial remission; 4) patients with recurrent disease;
5) patients in terminal stage.
Given that in the Romanian hospital environment there is no permanent
monitoring of cancer distress and cancer patients are not readily given the
possibility to access psychosocial services at the moment of diagnosis or in any
stage of the disease justifies the creation of a guideline for screening, assessment
and psycho-oncological intervention covering the initial, intermediate and final
stages of the psycho-oncological intervention.

1) The initial stage of the psycho-oncological intervention(sessions 1-3)


has the following objectives: building of a therapeutic relationship characterized by
empathy, unconditional acceptance and congruence; creation of an overview of the
patient’s main psychosocial needs, including elements of his/her life history;
normalization of the patient's emotional reactions; strengthening of the existing
coping mechanisms; creation of new coping mechanisms; permanent provision of
emotional support; and provision of information support.
The following areas are worth exploring for the initial assessment and
creation of an overview:
 patient's emotional mood;
 patient's illness trajectory to date;
 patient's mental representation of what cancer means (what does this health
problem mean to him/her, causes of his/her disease, how does cancer
evolve);
 changes he/she experienced so far;
 main coping mechanisms that he/she appealed to and considers useful;
 patient's emotional and social support;
 patient's life trajectory until the onset of the health problem;
 coping mechanisms used in other emotionally difficult moments;
 other psychological/psychiatric issues prior to this health problem (current
or previously recommended medication - prior to cancer diagnosis);
 patient's state of hopelessness (a significant predictor for depression/suicide
risk);
 other issues not related to the neoplastic diseases;
 family structure (including possible history of cancer cases in the family –
as it can influence the patient’s perception of the disease and therapy
options);
 any instrumental or pragmatic (e.g., financial) issues;
 other personal or medical details.

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At this stage, it is very important to tell the patient that he/she has all the
time he/she needs to tell his/her disease-related story or to reiterate his/her life
trajectory. Verbal and non-verbal feedback that one listens and empathizes is
essential for a patient to perceive quality of the emotional support.
A useful material is "The Oncology Patient’s Guide"4 leading the patient
through various coping strategies. The first part of the guide refers to the impact
cancer diagnosis can have and its consequences onto the patient's life. Part two
focuses on the problems the patient may face when learning the diagnosis and
reveals coping strategies that may prove to be useful in dealing with recent changes
in the patient's life. Two chapters towards the end of the guide are covering the
management of several issues common to most cancer patients, including insomnia
and fatigue.
Normalization of the patients' emotional reactions can be achieved by
explaining the difference between functional negative emotions („normal” distress
expressed through fear, worries or sadness) and dysfunctional ones (medium or
severe distress manifested as anxiety, depression, hopelessness, etc.).
The need to normalize patient’s emotional reactions can come up any time
throughout the psycho-oncological intervention. It is recommended to identify this
need and bring it into discussion at a timely moment (see also page 11 of "The
Oncology Patient’s Guide"). At this point of the psycho-oncological intervention it
helps to be as clear and creative as one can and to be permanently focused on the
therapeutic relationship.
Adaptive coping mechanisms are extremely important throughout the
cancer trajectory. Given that one generally refers to adult patients, one can assume
that throughout their life they were confronted with various problems requiring
emotional composure and have thus validated certain adaptive coping mechanisms.
These could be "recalled to active service” and, depending on the patient and
his/her resources, other functional/adaptive coping mechanisms could be discussed
and actually included in the process of adaptation to cancer.
An important issue in the initial stage is psycho-education (for disease and
treatment). It is indicated to be implemented but when the psycho-oncologist
considers the time is right for the patient he/she works with.
An intervention method that may be useful at this stage is practicing
relaxation techniques with the patient (e.g., autogenic training, breathing exercises -
particularly useful for patients experiencing panic attacks). Relaxation leads to a
reduction of the neurophysiologic activation, one of the issues that need to be fixed
when dealing with anxious reactions. One supportive material that deserves to be
added to the Oncology Patient’s Guide would be an audio support material on the

4 http://www.iocn.ro/PENTRU-PACIENTI/Servicii/Servicii-psihologice/Psiholog-Florina-Pop--
eID440.html

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Cluj-Napoca’s Institute of Oncology site.5 Relaxation techniques are most effective


if practiced regularly and an audio support could motivate such action.

2) The intermediate stage of psycho-oncological interventions


(sessions 4-7) aims to create a list of problems and set up the main goals for a better
adaptation to the neoplastic disease, to provide continuity in the offering of
emotional support, to introduce, conceptualize and practice techniques validated for
oncology patients. The most recommended therapeutic strategies are presented as
useful working tools in "The Oncology Patient’s Guide".
Another module that should be consulted is„ Psychosocial Intervention.
Evidence and Methods to Support Cancer Patients”(the Romanian language audio
presentation is to be found in the IPOS curricula).6

3) The final stage of psycho-oncological interventions (sessions 8-11)


has the following objectives: strengthening of the adaptation mechanisms to the
neoplastic disease, prevention of emotional relapses, fear of relapse therapy,
psychological reassessment, including objective scores regarding the patient’s
emotional state such as the Distress Thermometer – DT (Dabrowski et al., 2007;
Gil, Grassi, Travado, Tomamichel, & Gonzalez, 2005; Hoffman, Zevon, D'Arrigo,
& Cecchini, 2004; Holland & Bultz, 2007) or Emotional Thermometers – ET
(Mitchell, 2010; Mitchell, Barber-Gleen, Granger, & Symonds, 2010) tool and any
other assessment tool validated for clinical use.
The following questions can be useful for psycho-oncologists who want to
improve their ability to make more effective decisions when working with cancer
patients. Such questions may be taken into consideration after the psycho-
oncological meeting (in the early intervention stage):
1. How attentive and supportive did I manage to be during the meetings?
2. Was there a time when I felt that the therapeutic relationship was damaged? If
so, is it necessary to think of new ways to enhance the therapeutic relationship?
3. What is the patient's emotional problem? Can the emotional reaction be
considered as a normal or severe distress reaction?
4. In regard of the clinical interview, does the patient meet the criteria of a DSM V
– Axis I or II diagnosis?
5. Did I manage to normalize the patient's reactions?
6. Was the conceptualization sufficiently clear? Was it accepted by the patient?
7. What other specialists could exert a meaningful influence in this case (an
oncology social worker, a psychiatrist, a priest)?

5 http://www.iocn.ro/PENTRU-PACIENTI/Servicii/Servicii-psihologice/Servicii-psihologice-
adulti--eID436.html
6 http://docs.ipos-society.org/education/core_curriculum/ro/WatsonBultz_interv/story.html

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8. What progress have I seen so far regarding the emotional disposition, affective
symptomatology and behavior of the oncology patient?
9. What would be the most useful therapeutic direction at this point of the
therapeutic process depending on the time resources I have?
During the intermediate and final stage of the psycho-oncological
intervention the following questions might be useful for self-assessment:
1. What clinically and evidence-based techniques are more useful in this case?
2. Is the therapeutic relationship sufficiently supportive?
3. Did I establish together with the patient his/her expectations and goals
concerning the psycho-oncological intervention?
4. Did I adapt and argue well enough the tasks to be fulfilled between our
meetings?
5. Is my care for the cancer patient obvious, visible?
6. Did I mention him/her that we can stop the session without any questions if
he/she feels tired or is not in the best physical health to continue or any time
he/she wants to stop?
7. Every time when we formulate a rational alternative response, was I being
attentive if the patient considered it truly applicable for him/her?
8. Did I notice if such alternative rational response helps to reduce emotional
distress?
9. If needed, did I turn to other literature-recommended techniques for reducing
emotional distress?
10. Was the psychotherapeutic approach flexible and sufficiently adapted in this
case?
11. Did I use directed exploration in a helpful and not harming manner in regard to
the therapeutic relationship?
12. If the cancer patient experienced understanding difficulties, does it help to
wonder why? Were the explanations I offered not clear enough? Did anything
intervene to disturb the therapeutic relationship? Are the understanding
difficulties due to patient distress?
13. Did the patient practice sufficient coping modalities to prevent relapses, or, if
they occur, to manage them efficiently?
Rather frequently in the Romanian medical system the patient is
recommended only one session of psycho-oncological intervention, either at the end
of the treatment sessions (the last day of hospitalization or ambulatory treatment) or
when the patient experiences a crisis (e.g., when the cancer is diagnosed or when
experiencing a relapse).
After finalizing the treatment, the main issues worth pursuing are those
mentioned in the initial stage, completed by a package of materials (e.g., The

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Oncology Patient's Guide, information leaflets or referral towards external


psychosocial resources).
In crisis situations, the specialist’s attitude (supportive, congruent and
dominated by unconditional acceptance) is very important. In such cases,
symptomatic intervention prevails, ethiopathogenetic treatments being implemented
later. Dimensions worth pursuing are mainly those mentioned in the initial
intervention stage. Calm, attention to the therapeutic relationship, focus on the most
important elements that could stabilize patient’s emotional state (i.e., tested coping
strategies), tact and clinical judgment are essential ingredients in a crisis situation.
The oncological hospital environment also implies dealing with a number
of complicated situations, therefore great adaptability and a highly flexible
therapeutic attitude are required.

Psycho-oncological intervention techniques


Psycho-oncological interventions, including certain home assignments
(personalized tasks) between sessions (adapted to patient and hospital
particularities), are closely related to clinical conceptualization and aimed both at
providing emotional support and changing pathogenic elements. A methodological
eclecticism in psycho-oncological interventions may be promoted given the
existence of a rigorous clinical conceptualization and training in the use of
intervention packages.
Psycho-oncological intervention techniques include:
a) Guided discovery
b) Agenda setting for each meeting
c) Supportive and collaborative therapeutic relationship
d) Home assignments (tasks, to-do lists)
e) Learning of cognitive and behavioral coping strategies
f) Cognitive restructuring
g) Other techniques of psycho-oncological intervention, e.g. hypnosis and
relaxation techniques, guided imagery, mindfulness techniques, expressive
writing techniques.
a) Guided discovery is a technique presuming the alternation of open
questions with targeted questions related to coping styles agreeable for the patient.
When applying this technique the psycho-oncologist’s task is to assist the patient in
finding the most helpful adaptive coping strategies.
Example illustrating this technique:
"If a very dear family member would be in your situation, what would you
say? / What do you consider it would be useful for him/her to think about? / What
do you think it would be useful for him/her to do? / What could be a different
perspective on this situation? / Of the people with similar health problems you have

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met during hospitalization who would you take as a model? How is this person
thinking? How does this person react? / What could be done to change this
situation? What else do you think would help?"
It is recommended to address these questions on the background of a
therapeutic relationship dominated by empathy, unconditional acceptance and
congruence.
b) Agenda setting is indicated to be taken into account at the start of
therapy sessions.
Example: "Let me ask you what do you want us to focus on today? Is there
one particular aspect that you specifically want to talk about today/ during this
session/ meeting?".
c) Supportive and collaborative therapeutic relationship
The therapeutic relationship is generally characterized as a working
alliance and is described as a supportive attitude of confidence and cooperation,
driven by the patient’s hopes that his/her affective/emotional symptomatology will
diminish or be eliminated, but first of all by the unconditional acceptance of the
patient by the therapist.
Literature sources (Lederberg & Holland, 2011 as cited in Watson
&Kissane, 2011) state that supportive therapeutic intervention for cancer patients
and their families should be the most important tool of a psychosocial professional
(p.3).
In clinical practice, emotional support is recommended to be offered since
the first session and to be reinforced during the intermediate and final steps of the
psycho-oncological intervention. For example, in the early days of hospitalization,
after surgery, when the patient's general physical condition is impaired, supportive
psycho-oncological intervention is the most appropriate therapeutic procedure7.
The collaborative part of the therapeutic relationship is completed by
techniques such as agenda setting and focusing on to-do lists (home assignments)
between meetings. An important element to consider is that psycho-oncologist will
work full time on the cancer patient’s agenda (objectives and needs). Remember
that the patient is the expert in deciding which coping strategies are the most useful
adaptive in his/her case.
d) To-do lists/ home assignments
When a patient is involved in a psycho-oncological intervention it is easy
to see that his/her cognitive and behavioral patterns involved in dysfunctional
(maladaptive) emotional reactions are well sedimented. Psycho-oncological
intervention sessions are essential in identifying and changing these patterns, but an

7 Recommended: Chapter 1, pages 3-13, Handbook of Psychotherapy in Cancer Care, First


Edition. Edited by Maggie Watson and David W. Kissane (2011).

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effective intervention is augmented by changes occurring in the patient’s everyday


life. To-do lists (home assignments) are in fact a prolongation of the psycho-
oncological intervention session in everyday life.
Examples of home assignments for cancer patients: bibliotherapy
(therapeutic stories, lecture of the Oncology Patient’s Guide, psycho-educative
materials), completion of various monitoring sheets concerning his/her emotional
state, practicing of relaxation techniques, and building of coping cards.
One of the most recommended and adaptive home assignments involves
coping cards (which can also be used in functionally managing fear of relapse).
These are usually 5 inch cards the patient keeps at hand and is encouraged to read
them regularly (e.g., two times a day) and whenever he/she feels that the negative
emotional state has intensified. These cards may have different contents, including
an adaptive response to an automatic negative thought, examples of dysfunctional
beliefs on one side of the card and the appropriate adaptive response on the other
(Beck, 2010). An aspect to remember is that home assignments should be tailored to
the patient and the hospital context. On the other hand, keep in mind that home
assignments cannot be prescribed in every meeting/session.
If the psycho-oncologist notices that the patient is not compliant to home
assignments, it helps to ask oneself the following questions: "Does this homework
seem to beoverwhelming? /Does it seem unnecessary? (Have I not argued well
enough the benefits of its completion?)/ Might there be certain expectations/beliefs
that interfere with the completion of this assignment? /Could there be any
difficulties in understanding the requirements?"
e) Learning of cognitive coping strategies
When practicing psycho-oncological interventions it helps to start from the
premise that the patient is an expert of his/her own emotions and behaviors, while
the psycho-oncologist has expertise in different coping strategies that may be useful
for modifying various dysfunctional thinking and behavioral patterns. This
expertise can be supplemented by the usage of “The Oncology Patient's Guide".
f) Cognitive restructuring
At the moment, the best validated model of psychological intervention is
the cognitive-behavioral one. It argues that the interpretation of a situation (rather
than the situation itself) influences emotional, behavioral and physiological
reactions/responses of the patient. So, for many cancer patients with clinically
significant affective symptomatology connections between how they think about
health issues and the emotional reactions they experience can be made. Monitoring
thoughts and emotions helps the patient to find out how they interconnect. At this
stage one can work with "The Oncology Patient’s Guide" pages 11-18.
In applying this technique, it is recommended that identification and
changing of dysfunctional/irrational negative thoughts to be instituted by the
psycho-oncologist during the intermediate stage of the intervention, when a

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therapeutic relationship is already established, otherwise this relationship might be


damaged and psychological reactance may occur (Brehm, 1981), i.e. the patient
might perceive the existence of a psychological barrier between him/herself and the
psycho-oncologist.
g) Other psycho-oncological techniques: hypnosis and relaxation
techniques, guided imagery, mindfulness techniques, expressive writing
techniques8.

Conclusion of the therapy and relapse prevention


The ultimate objective of a finalized psycho-oncological intervention is to facilitate
remittance of the patient’s emotional distress or disorder and to educate the patient
to become his/her own therapist. In the oncology hospital context, such an objective
can be established for patients hospitalized for longer periods of time, such as for
radio-therapeutic treatment. However, it is advisable to initiate relapse prevention
from the first session of the psycho-oncological intervention, as soon as the
normalization of emotional reactions is accomplished (see page 7 of the "Oncology
Patient’s Guide"). Given that the psycho-oncologist prepares the patient for
fluctuations and relapses early in the establishing of the intervention process it is
less likely that he/she will collapse when they occur.
An example of preparation for relapse: The cancer patient under psycho-
oncological intervention begins to feel better, i.e. the situation is emotionally stable.
At this stage the psycho-oncologist can ask him/her to imagine what would cross
his/her mind if he/she will start to feel bad again. One listens carefully and then
helps the patient to answer these thoughts and mental images and to write a coping
card ("I have a choice: I can concentrate on how I feel at the moment and this will
intensify my emotional state and make me think that everything is hopeless and
perhaps I'll soon feel worse, or I can think of what helped me in a similar situation
and look over the guide I received at the hospital, remembering that relapses are a
normal part of the process I am passing through").
It helps if coping cards are built and adapted together with the patient to
increase compliance of their use. It is recommended that notes made during the
screening, assessment and psycho-oncological intervention meetings are retained.
A standard psychological observation file should contain the following
items regarding the cancer patient:
 Name and Surname/ Contact details;
 Reason for requesting psychosocial services;
 A summary of the malignant diagnosis and oncological treatment followed;

8 Maggie Watson and David W. Kissane (Eds.), Handbook of Psychotherapy in Cancer Care,
FirstEdition (2011), chapters 3, 4, 5, 9.

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 Main psychosocial needs;


 Social support;
 Coping strategies;
 Assessment of the first intervention session (including objective scores);
 Evaluation at the end of the intervention (including subjective scores);
 Information materials offered;
 Duration of the intervention (number of sessions);
 Other relevant comments (e.g., patient resources, motivation for change).

Management of suicidal behavior in cancer patients


Suicidal behavior is a serious public health problem, but among oncological
patients the risk of suicidal behavior is about 1.5 times higher than in the general
population (Anguiano, Mayer, Piven, & Rosenstein, 2012).
Experts of the National Cancer Institute (NCI, 2016) specify two categories
of suicidal risks for oncology patients: general and specific. The category of general
risks includes the following: the existence of a mental illness history (especially if
associated with impulsivity), a family history of suicide or suicide attempts,
depression, abuse of toxic substances, the recent death of the patient’s spouse and
low social support. The category of specific risks includes: the type of cancer (e.g.,
oral and pharyngeal cancers, usually associated with tobacco and the consumption
of alcohol, occupy top positions), stage of the disease and its association with a
poor prognosis, confusion, inadequate pain control, the presence of certain
symptoms or deficits (e.g.,loss of mobility, loss of sphincter control, paraplegia,
inability to swallow, choking, fatigue, exhaustion).
Suicidal thoughts are common to oncology patients; therefore, an
individual assessment of suicidal risk is recommended. Patients at risk may benefit
of consultation, diagnosis and psychiatric treatment.
As recommended9,in preventing the development of suicidal behaviors it
helps to remember the following issues:
 encouraging disclosure
 availability of the specialist (by allowing the patient time to talk while
listening and showing concern one proves to the patient that he/she is not
completely alone)
 calm and an attitude of non-judgmental unconditional acceptance on behalf
of the specialist is very important as patients with suicidal ideation might
already have a very low self-esteem
 checking the patient for persistent suicidal thoughts (see if the patient has a
clear plan)

9 http://docs.ipos-society.org/education/core_curriculum/ro/WatsonGrassi_suicide/story.html

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 exploring the patient's intentions and circumstances that could lead to


suicidal behavior
 referring the patient to psychiatric emergency services

Psycho-oncological interventions addressing caregivers


Not just people passing through the stages of cancer treatment experience emotional
distress, but caregivers as well10. Family members of the cancer patients receive too
little information, support and training on the role of being a caregiver of a cancer
patient. An information support that can be used to address informative needs of the
caregivers is the “Guide for family members of seriously ill patients: Together until
the last moment"11.
Another type of intervention recommended for cancer patients is the
supportive group intervention. This type of psycho-oncological group intervention
proved to be effective in reducing distress and psychological problems, as well as in
increasing quality of life in cancer patients (Shead & Maguire, 1999; Hoey, Ieropli,
White, & Jefford, 2008; Osborn, Demoncada, & Feuerstein, 2006).
The main factors of success in a psycho-oncological group intervention are
linked to the group’s social support, instilling of hope (seeing that some members of
the group have succeeded, the patient understands that he/she might also succeed),
learning through modeling (adaptive coping strategies in particular), psychosocial
adjustment (the patient understands better that the difficulties he/she faces are not
only his/hers, but others as well).
In order to increase the effectiveness of building a therapeutic group within
an institute of oncology or a department of radiotherapy recommendations are that
patient selection to be carried out on admission for the first session of radiotherapy,
the number of members to be 8 to a maximum of 12 and the first selection phase to
target a short semi-structured clinical interview focused on identifying personality
problems (such persons not being eligible to participate in group therapy due to the
risk of distorting group dynamics).
In the Romanian oncological context,the most eligible group of patients
which could benefit from a psycho-oncological supportive group intervention is that
of breast cancer patients undergoing curative radiation therapy treatment due to
their longer hospitalization (from at least 3 up to 6 or 8 weeks) and the fact that
generally their physical condition is not severely affected.
To conclude, in Romania the field where one can intervene at the moment
is that of increasing the quality of the psycho-oncological care. This guide is
intended to provide directions for clinical decisions meant to improve services
offered to cancer patients.

10 http://docs.ipos-society.org/education/core_curriculum/ro/Baider_fam/story.html
11 http://goo.gl/xeHyDn

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Recommendations
As psychosocial interventions with cancer patients require a more complex
organization, this section concludes with the following recommendations:
1. A first step in the process of identifying patients in need of psychosocial
oncology care is to introduce quick and efficient tools for screening cancer
distress that are already adapted and validated in Romania (Dégi, 2014b).
Given that cancer distress has several dimensions, including a social one,
distress screening tools should be inclusive instead of focusing on a particular
symptom. Cancer distress can manifest anytime in the cancer trajectory and
may go undetected if screening is conducted but once.
2. Coordination of comprehensive patient care through the national health system
and piloting of an integrated plan for psychosocial screening and support during
oncology treatment and care, taking into account case-specific physical,
medical and psychosocial needs.
3. Establishing a coordinator of psychosocial support activities (case - manager)
throughout the cancer trajectory to ensure that services meet the needs of cancer
patients. A better integration of all aspects of the medical and psychosocial care
addressing patient should be considered, especially in key points of transition
(cancer diagnosis, treatment, remission, first recurrence and advanced/terminal
stages),thus patients feeling better informed and empowered, exerting greater
involvement in decisions regarding their own care, experimenting an
improvement in personal experiences and quality of life.
4. Providing psychosocial support and care to patients diagnosed and treated for
cancer and/or their caregivers/family members as an integral component of best
practice clinical care. All members of the multidisciplinary team (including
physicians, nurses, psycho-oncologists and oncology social workers) play a role
in providing supportive care. Family, friends, support groups, volunteers and
other community organizations complete the range of supportive care
providers. Health professionals and/or different organizations provide
supportive services including self-help, symptoms control, social support,
rehabilitation, spiritual support as well as palliative care and bereavement
support.
5. It is essential that at least 50% of the oncology patients receive a post-treatment
plan. Such plan will take into account the individual needs of the patients
regarding medical monitoring, psychological and social support.
6. Information services provided through multimedia platforms are vital in
offering cancer patients and their families updated references on medical,
social, legal and practical data relative to various forms of cancer. Increasing

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the patients 'and informal careers’ access to information on cancer and services
available can be accomplished through various media such as information
leaflets, access to help-lines, e-mail and other online facilities available in
conjunction with the e-government strategy.
7. Better disease management and greater involvement in the decision-making
process require the development of good practice codes for care centers and
support groups, as well as of tools meant to facilitate the exchange of
information on curative solutions/services, care and support. Enhancing
patients’ experience in all stages of cancer can be accomplished by
disseminating follow up and treatment-resuming criteria, by facilitating a better
cooperation between the medical community and patient support networks
(family, volunteers) and by promoting the development of quality guides on
various cancers, oncology services and care standards in collaboration with
scientific societies, and patient or volunteer organizations.
8. Fighting against all forms of professional exclusion regarding persons affected
by cancer, survivors or patients in remission, by providing support for
reintegration into the workforce, assistance in return to work, with direct effects
on improving patient/survivors` quality of life.
9. Romanian social worker with expertise in oncology can use in their activities
with cancer patients the AOSW Good Practice Standards for Social Workers in
Oncology, translated into Romanian and Hungarian languages.12
10. In their clinical work psycho-oncologists need to rigorously and responsibly
personalize the following: 1) good practice recommendations on psycho-
oncological intervention described in this guide; 2) their own professional
expertise; 3) specifics regarding cancer patients and the psycho-oncology
domain; 4) recommendations of the latest studies in the field of oncology; 5)
the professional ethics code of certified psychologists13.
11. The risk of developing suicidal behaviors by inpatients and/or outpatients
should be carefully managed in all oncology units, trough implementation of a
jointly agreed protocol addressing this issue according to existent professional
standards14. In order to become functional such protocol outlining the
distribution of responsibilities according to a general staff organigram for
oncology units should be customized for each institution and made available to
all personnel by being kept in the clinics’ computer systems, emergency rooms
and/or other areas accessible to staff only.

12 http://goo.gl/9S2EeP
13 www.copsi.ro
14 http://docs.ipos-society.org/education/core_curriculum/ro/WatsonGrassi_suicide/story.html

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12. A comprehensive approach to cancer care implies existence of


multidisciplinary work teams and development within the oncology centers of
psycho-oncology units consisting of psycho-oncologists, oncology social
workers, nurses trained in psychosocial care, psychiatrists, and a pastoral
counselor (priest). This multidisciplinary team will provide and monitor clinical
support activities for cancer patients irrespective of treatment stage,
professionals’ training, and psychosocial oncology research (Păun & Anghel,
2003).

ACKNOWLEDGMENTS
Dégi László Csaba's participation in developing this guide was funded by a grant from the
National Authority for Scientific Research and Innovation, CNCS - UEFISCDI, project no. PN
II-RU-TE-2012-3-0011. More information can be found at: http://www.psychooncology.ro.
Thanks to Miss Oana Dumitraşcu for suggestions on completing this guide.
Thanks to Mr. Radu Munteanu for support in translating the manuscript.

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