PART 1
Clinical Issues
CHAPTER 1
Introducing Multicultural Psycho-oncology
Luigi Grassi1 and Michelle Riba2
1Section of Psychiatry, Department of Medical and Surgical Disciplines of Communication and Behaviour, University of Ferrara, Italy
2Department of Psychiatry, University of Michigan and University of Michigan Comprehensive Cancer Center, Ann Arbor, MI, USA
There is one short rule that should regulate human relationships. All that you see, both divine and human, is one. We are the parts of one great body. Nature created us from the same source and to the end. She imbued us with mutual affection and sociability, she taught us to be fair and just, to suffer injury rather than to inflict it. She bids us extend our hands to all in need of help. Let that well-known line be in our hearts and on our lips: I am a man: I deem nothing pertaining to man is foreign to me (Homo sum, humani nihil a me alienum puto).
Lucius Annaeus Seneca, Epistulae Morales ad Lucilium,
Book XV, Letter 95:52–53 (62–65 AD)
According to the World Health Organization (WHO) projections, it is estimated that the incidence of cancer will increase by the year 2030, with new cases of cancer jumping from 13.3 million in 2010 to 21.3 million in 2030 and cancer deaths rising from 7.9 million to 13.1 million. At the same time, earlier diagnoses and improvement in cancer therapies have also noted an increase in survival for about 25 million people (long-term survivors) throughout the world.1
It is clear that this epidemiological data has a specific value if evaluated through a global perspective which takes into account the important issues of quality of life and psychosocial needs of cancer patients. In fact, cancer is not only a series of very different diseases needing complex treatments, from many professionals, but also a devastating and ‘traumatic’ event with physical, emotional, interpersonal and social implications that should be constantly monitored across the disease trajectory, and into survivorship. Being affected by cancer means an overall transformation of the sense of one's own self, in which the parameters of time (the past, the present, the future), of space (one's own individual space, one's own home, one's own world context) and of existence (Umwelt, the biological dimension, my body; Eigenwelt, the relationship with myself, my-being-in-the-world; Mitwelt, the relational dimension with others; Überwelt, the spiritual dimension, the meaningfulness) are altered by the diagnosis and treatment, recovery and recurrence or transition to palliative and end-of-life care.
Starting from the work of a small group of psychiatrists,2–6 interested in examining the psychophysiological and emotional factors implicated in cancer and cancer treatment, oncologists quickly started showing a specific need for more precise indications about the psychosocial, behavioural and rehabilitative issues in cancer care. This determined the rapid growth of the psycho-oncology discipline in the USA from the 1970s7–10 and subsequently, from the early 1980s, in many other countries, such as France, Germany, Italy, the Netherlands, the United Kingdom, to cite just a few.11
Over the last quarter of a century, a large number of psycho-oncology studies have in fact indicated that 30–40% cancer patients fail to adapt, and present emotional disorders – mainly depression, anxiety and adjustment disorders according to the ICD-10 and DSM-IV taxonomic systems – as a consequence of cancer and cancer treatments.12 A further 15–25% present other significant psychosocial conditions, such as health anxiety, irritable mood, demoralization, or general emotional distress which are not identified by the usual categorical systems (e.g. DSM-IV and ICD-10) but by other systems (e.g. the Diagnostic Criteria for Psychosomatic Research), and which are dysfunctional and maladaptive symptoms.13
The implications and the impact of psychosocial disorders for patients and their families are of paramount importance in oncology with several studies demonstrating that clinically significant distress is associated with maladjustment, reduction of quality of life and impairment in social relationships, longer rehabilitation time, poor adherence to treatment and abnormal illness behaviour, and possibly shorter survival.14 Significant levels of emotional distress have been reported also to affect family members and there is evidence that unrecognized and unmet psychosocial needs are an important predictor of psychological morbidity in caregivers in every phase of the illness.15–18 Various types of psychosocial interventions have also been shown to be effective in reducing psychological symptoms and improving quality of life among cancer patients.19–21
Thus, psycho-oncology, as the specialty aiming at studying the psychological, social and spiritual factors that affect the quality of life of cancer patients and their loved ones, has today a specific and unquestionable role in the multidisciplinary approach to cancer. This role has been defined, in several countries, through the development of psycho-oncology services, programmes and/or departments with the mission of providing specific activities in terms of clinical care, education and research. Furthermore, guidelines and recommendations on psychosocial care in cancer have been developed and endorsed by national and international scientific societies of psycho-oncology as well as by advocacy movements.22
The National Standards for Psychosocial Oncology published by the Canadian Association of Psychosocial Oncology (CAPO) (1999) includes today standards of care, organizational standards, educational standards and integration of all phases of the cancer control trajectory, including prevention and survivorship.23 Several agencies and institutions, such as the Canadian Association of Provincial Cancer Agencies, the Canadian Cancer Society, the Canadian Strategy for Cancer Control, and the Canadian Council on Health Services Accreditation, have endorsed CAPO's recommendations. Furthermore, clinical guidelines on the assessment of psychosocial needs of cancer patients and on the screening, assessment and care of psychosocial distress in cancer have also been developed (www.capo.ca).24,25
Comprehensive clinical guidelines are available in Australia (www.nhmrc.gov.au) where the first document, Psychosocial clinical practice guidelines: information, support and counselling for women with breast cancer (National Breast Cancer Centre, 1999),26 represented the basis for the subsequent development of the Clinical practice guidelines for the psychosocial care of adults with cancer, published by the National Breast Cancer Centre and the National Cancer Control Initiative.27
In the United States, the National Comprehensive Cancer Network (NCCN) Distress Management Panel, consisting of multidisciplinary health care professionals developed the guidelines on distress, starting from 199728 to the most recent version I.2011.29 The work of the panel has been recognized throughout the world, where an ultra-short tool, the distress thermometer, has rapidly become one of the ‘gold standards’ for the rapid screening of distress, identified as the ‘sixth vital sign’, with the same importance as blood pressure, temperature, heart frequency, respiratory rate and pain.30,31
In more recent years, at the request of the National Institutes of Health (NIH), the Institute of Medicine (IOM) of the National Academies of Sciences published the conclusions of a specific working group32 indicating that enough evidence exists for the inclusion of psychosocial health services in cancer care, and stressing that ‘Attending to psychosocial needs should be an integral part of quality cancer care […]’, since ‘It is not possible to deliver good-quality cancer care without addressing patient's psychosocial health needs.’
Similarly, the conclusions of the European Council33 clearly acknowledge the significance of psychosocial aspects in cancer care, indicating that ‘to attain optimal results, a patient-centred comprehensive interdisciplinary approach and optimal psycho-social care should be implemented in routine cancer care, rehabilitation and post-treatment follow-up for all cancer’(par. 5), and emphasizing that ‘cancer treatment and care is multidisciplinary, involving the cooperation of oncological surgery, medical oncology, radiotherapy, chemotherapy as well as psycho-social support and rehabilitation and, when cancer is not treatable, palliative care’(par. 11).
Thus the general results of the above-mentioned reports are that the evaluation and treatment of psychosocial consequences should be mandatory in every cancer centre. This is in accordance with the statement ‘No health without mental health’,34 which sets out to guarantee the quality of life of any individual in society to receive optimal medical and psychiatric care, incorporating attention to psychosocial needs into policies, practices and standards of clinical care.35,36
This is also the message launched by the International Psycho-Oncology Society (IPOS) and the Federation of the Psycho-Oncology societies through the Statement on Standards and Clinical Practice Guidelines in Cancer Care, which indicates that ‘quality cancer care must integrate the psychosocial domain into routine care’ and that ‘distress should be measured as the 6th Vital Sign after temperature, blood pressure, pulse, respiratory rate and pain’ (www.ipos-society.org).37 A number of organizations and associations throughout the world, including the International Union Against Cancer (UICC), the International Society of Paediatric Oncology (SIOP), the Canadian Cancer Society, the Clinical Oncological Society of Australia, the World Psychiatric Association (WPA), as well as advocacy movements, such as LIVESTRONG and Reach to Recovery International, have endorsed this statement. The webcast lectures series on psychosocial aspects of cancer care (communication, psychological assessment, distress management, anxiety, depression, family issues, bioethics, palliative care, loss and grief, psychological intervention) developed by IPOS and available online in several languages (Chinese, English, French, German, Hungarian, Italian, Japanese, Portuguese, Spanish) is also in agreement with the concept that account should be taken of mu...