© Springer Science+Business Media New York 2016
R. Lor Randall (ed.)Metastatic Bone Disease10.1007/978-1-4614-5662-9_1414. Psychosocial Considerations for Patients with Metastatic Bone Disease
(1)
Patient and Family Support, Huntsman Cancer Hospital, Salt Lake City, UT, USA
Keywords
PsychosocialDistressQuality-of-lifeBone metastasesDepressionAnxietyPsychosocial care, a critical component to supportive oncology, needs to be an integral part of quality cancer care for patients with metastatic bone disease. The Institute of Medicine (IOM) report (2008) [1] defined psychosocial health services as “psychological and social services that enable patients, their families and health care providers to optimize biomedical healthcare and to manage the psychological/behavioral and social aspects of illness and its consequences so as to promote better healthcare.”
Patients with bone metastases represent as much as 40 % of an oncology practice and at least half of these patients have uncontrolled pain [2–4], poor quality of life [2–10] and increased care costs [11]. Carcinoma bone metastases occur 15 times more often than primary bone tumors [12]. The most common carcinomas to develop bone metastases are prostate and breast, followed by lung, renal cell, and thyroid. The life expectancy of these patients varies greatly depending upon disease type [13]. As many as one third of carcinomas include bone metastases. Lymphomas account for 7 % [12] of malignant bone tumors and more than 80 % of multiple myeloma patients develop symptomatic bone lesions [13, 14]. Alone, myelomas account for 45 % of all bone tumors [12].
Supportive oncology which should include symptom and pain management as well as psychosocial services for patients with bone metastases is vital. These patients respond positively to nonpharmacological interventions [15] such as psychotherapy which can be used in conjunction with analgesia regimens. These advanced cancer patients also experience significant psychiatric disorders at the same rate as the general population but tend to access and utilize mental health services at a much lower rate [16]. Although efficacy of psychosocial support on survival is unclear [17–19]; it does have a positive impact on quality of life, treatment compliance [17, 20] and decreases utilization of unnecessary care [21, 22]. Patients who have coping responses of hopelessness and helplessness combined with limited social support have been shown to have decreased life expectancy [17, 23–26]. It is paramount that medical providers refer patients and caregivers to oncology mental health providers to address psychosocial needs beyond their medical treatments.
Psychosocial Screening, Assessment and Treatment
Psychosocial distress screening is an effective first step and an integral component to assessing and treating psychosocial needs of patients with bone metastases. Distress, as defined by the National Comprehensive Cancer Network (NCCN), is “an unpleasant emotional experience of a psychological, social and/or spiritual nature that interferes with the ability to cope effectively with cancer and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability and sadness, to problems that can be disabling, such as depression, anxiety and social isolation” [27]. The IOM and NCCN have emphasized the need for distress screening for several years [1, 27]. The American College of Surgeons (ACoS) Commission on Cancer (CoC) has set distress screening standards for accreditation starting in 2015 [28]. The distress screening standard set by the CoC (3.2) have five components that should be addressed when implementing a screening process:
1.
Timed distress screening of patients at key or “pivotal” medical visit(s), one screen minimum.
2.
The method of screening (paper and pencil, computer generated, interview with provider) to be determined by the program.
3.
The tool(s) for screening is also to be determined by the program. Tools are encouraged to be standardized and validated with established clinical cutoffs, but this is not required.
4.
Assessment and referral for those who demonstrate “moderate or severe distress.” This process should include evaluation of psychological, behavioral, and/or social problems that interfere with the patient’s ability to participate in or manage their health care needs and/or the consequences of the illness.
5.
Documentation of the screening, referral, and care needs, including follow-up care, should be clearly detailed in the patient’s medical record [28].
Screening for distress provides an opportunity to identify and address the most at-risk patients with newly diagnosed bone disease. Highly distressed patients require more medical care than their less distressed counterparts. They have increased difficulty making decisions, often miss more medical appointments, are less likely to follow treatment regimens and tend to have decreased patient satisfaction with their medical care [21, 27, 29–31]. Unaddressed emotional needs may result in increased somatic complaints including poor memory, decreased concentration, and increased fatigue and pain [11], which can result in increased and unnecessary evaluations, tests, medications, and treatment [11, 21, 22].
Significant research has been done comparing various tools to assist programs in determining which might best fit their organization or system [21, 32–37]. Several tools have been developed that are both valid and reliable. Cost varies, but some are available at no charge. Operationalized tools and screening systems that provide structure and a process for implementing distress screening components have been developed by various institutions and companies. These systems are customizable to meet provider and/or organizational needs. Choosing the right tool and developing a standardized screening process or investing in an existing electronic screening system should be done with thoughtful consideration from a multidisciplinary team. Oncology trained mental health providers who can skillfully screen, assess, and address the unique emotional and practical needs of patients can significantly reduce provider time [11, 21, 27, 29–31] by addressing psychosocial issues.
Distress screening, when viewed from a theoretical framework such as Stress Model Theory (SMT), as suggested by Dr. James Zabora, demonstrates how screening works and why it is beneficial to identify those at moderate and high risk [38]. According to SMT, stress (or distress) comes from an imbalance of internal and external resources in relation to the perception of demands being made of the individual. It is the perception of the stressor combined with the individual’s coping skills and his/her external resources that mediates the stress response. This suggests individuals control distress via their coping skills and support system(s) [39, 40]. This can also explain why some patients struggle and others are able to complete treatment and even end-of-life with little need for additional support [39, 40]. This concept is significant for patients with bone metastases because the disease has shifted from a potentially curable to a terminal process. The demand on their coping resources (internal and external) has and will increase. Patients with limited or dysfunctional internal coping skills and external resources may have increased distress and will require more external supports [41] from their providers, the medical system, and their community.
Providing a timely psychosocial assessment for moderately and highly distress patients by a licensed mental health provider with expertise in oncology reduces the risk of overlooked needs, decreases medical staff’s responsibilities to those needs, and leads to a more equitable delivery of care for all patients [42]. As disease progresses, so does pain, distress, and other psychosocial needs of patients and their caregivers. Rescreening and reassessing of patients ensures that needs are consistently identified and addressed. A thorough psychosocial assessment should include physical, psychological, social, financial, legal, spiritual, and existential inquiry. Obtaining histories from patients and from family members and/or primary caregivers regarding psychological and behavioral health, substance use, suicide ideation, body image concerns, and sexuality are also critical to effectively treating psychosocial needs of patients [27, 42, 43]. Despite time and resource limitations, assessing and treating the psychosocial needs of patients with metastatic bone disease is effective and provides overall cost savings [11] to providers and healthcare systems. Employing the support of oncology trained mental health clinicians and utilizing other screening tools facilitates an effective assessment process. Several valid and reliable tools such as the Patient Health Questionnaire-9 (PHQ-9), Hospital Anxiety and Depression Scale (HADS), Generalized Anxiety Disorder 7 (GAD-7), Functional Assessment of Cancer Therapy General (FACT-G or FACT-G7), and Functional Assessment of Cancer Therapy Bone Pain (FACT-BP) provide a quick and efficient method to screen and assess specific concerns such as anxiety, depression, quality of life, and pain.
Once a patient and the family or caregiver(s) have been assessed and the needs have been identified, appropriate interventions should be provided. Managing the complexity of mood and behavioral disturbances associated with cancer or exacerbated by diagnosis and/or treatment requires trained mental health providers to utilize a unique skill set. Modes of intervention may include (but are not limited to): individual, couple, family, and group psychotherapy, emotional support for individuals or groups, patient and family education, cognitive behavioral interventions, skill development such as mindfulness based practice or problem solving, and existential and meaning based therapies. Problem solving and connecting patients and caregivers to medical and community resources can be an effective method for building rapport and can also be an avenue to address the emotional and psychological impact a cancer diagnosis, especially a terminal one, has on an individual and/or family system. Goals of care discussions should be facilitated throughout the continuum of the patient’s care and are best done in the context of a family meeting. Often these discussions will need to be with patients and their families more than once. Patients and families need time to process information about illness and prognosis, both cognitively and emotionally. These two processes, which can often appear from the outside to be misaligned, even through end-of-life, can be understood within the framework of the family system. Social workers provide support, education, and therapeutic interventions for patients and families within the context of their system. Attempts to forcibly change a dysfunctional system amidst a significant life-changing event such as a terminal diagnosis often results in decreased quality of life, poor patient and family satisfaction with their provider and often results in increased utilization of medical services [11]. Oncology social workers are skilled to assist health care providers understand these complex patient and family behaviors and decisions [44] within their context. When mental health providers are able to intervene with complicated family dynamics (fixed patterns of behavior that are often more apparent during crisis) with providers, the patient’s decisions and/or behaviors either may no longer appear maladaptive or may, at least, be managed. Managing complicated family dynamics ensures conversations about goals of care remain patient-centered.
Depression and Anxiety
Interventions for depression and anxiety are effective with both newly diagnosed patients and those with metastatic disease. Stigma around mental health and emotionally supportive services continues to be one of several barriers to distressed and emotionally compromised patients. Depression, anxiety, and adjustment disorder with depressed mood can be diagnosed in 16–25 % [45–47] of newly diagnosed cancer patients, and is higher with metastatic and terminal patients [11]. Receptivity to services and interventions will vary. It is estimated by some studies that oncology psychosocial services continue be severely underutilized at a mere 14 % acceptance rate, when moderate to high distress accounts for somewhere between 30 to 40 % of all cancer patients [18, 48–50]. Psychological and psychosocial distress varies among disease type, but is consistently high with those who have a poor prognosis and a significant symptom burden, which is often the case for those with metastatic disease to the bone [11, 50]. Cognitive behavioral and existential therapeutic interventions that provide hope and reduce a sense of helplessness and worthlessness can improve quality of life, as long as physical symptoms are adequately managed [51, 52].
Depression and anxiety develop in cancer patients at a higher rate compared to the general population. However, these disorders manifest differently. The oncology trained mental health provider can assess whether the disorder(s): predates the cancer diagnosis; is a result of the illness or the treatment; is a medication reaction; or is a reactive response to the diagnosis or prognosis. Distinctions like these help determine what interventions are needed. For example, a patient with preexisting psychiatric disorders may require more care coordination with his or her community providers and closer monitoring by the multidisciplinary team. Some medications, such as steroid use, can exacerbate anxiety, and may require a multidisciplinary discussion to consider adjusting the treatment regimen. Another patient may have an adjustment disorder as a result of receiving news he/she has metastatic disease and may require ongoing individual support to process the difficult emotions and may benefit from referrals for practical resources to assist with day to day functioning. These patients may present with similar needs, but the necessary interventions are not. Depression [53] is an emotional disruption with persistent and pervasive low mood and loss of interest in usual activities over a period of time. Patients with cancer are at two to four times higher risk [54] of developing depressive symptoms throughout the course of their care. One study found 29 % of their pain and palliative care patients [55] met criteria for clinical depression. Anxiety is also a normal psychological and emotional reaction to a real or perceived threat. Anxiety disorders are problematic for patients because they may interfere with functioning and, for some, can be debilitating. Depression and anxiety are treatable with a variety of interventions including medication, individual, group and/or family psychotherapy, cognitive behavioral therapy, existential therapy, and skill development such as mindfulness based practices, meditation, progressive muscle relaxation, or guided imagery.
Post-traumatic Stress Disorder
A cancer diagnosis, especially with metastases, and the subsequent treatment can be traumatic both physically and psychologically [56] for patients as well as caregivers. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) [53] describes PTSD as the exposure to actual or threatened death, serious injury, or violence, and can develop by either direct exposure or witnessing others’ trauma. Symptoms of PTSD include persistent, involuntary reexperiencing of traumatic events, emotional numbing and detachment from others [53]. Patients with preexisting PTSD may have exacerbated symptoms as a result of cancer treatment. Reports of post-traumatic stress symptoms and PTSD as a result of cancer care, vary greatly and requires additional research and attention. Therapeutic interventions, specifically cognitive behavioral and skill development of relaxation techniques and anger management are effective for those with PTSD symptoms and should be addressed by mental health providers throughout the course of the patient’s care.
Suicide Ideation
Patients with metastatic bone tumors, due to the disease process, have several risk factors for suicide ideation and this should be regularly assessed. A terminal illness, significant symptom burden, and poorly controlled pain are all risk factors; therefore, suicide assessment is a vital component to cancer treatment, psychosocial services, and overarching supportive care services [57, 58]. Additional risk factors for suicide include depression, previous attempt(s), age, sex, substance abuse and limited social support. Hopelessness is also a risk for suicide completion. Active suicide ideation should be address immediately by a mental health professional. Three large Scandinavian studies have identified certain anatomic cancer sites which may increase suicide risk in some patients. A Denmark study found those with breast and lung cancers complete suicide at higher rates [59]. A Norway study found lung and oropharyngeal cancer [60] were at higher risk, while a Swedish study identified esophageal, pancreatic and lung cancers [61] completed suicide at higher rates than the general population. Another study took tumor registry data from Surveillance, Epidemiology and End Results (SEER) program of the National Cancer Institute and analyzed data submitted from 1973 to 2002 and compared it to national US mortality data on non-cancer suicides. This study suggested the rate of suicide was twice as high with cancer patients as compared to the general population and remained higher for as much as 15 years after diagnosis. This study, like the Scandinavian studies, also identified lung, as well as stomach and head and neck cancers at a higher risk for suicide in the USA [62].
Suicide assessment and intervention is another critical component to supportive oncology psychosocial care. It is estimated that as many as 45 % of those who complete suicide have seen their primary care physician within the 30 days prior to their death [63]. Assessing and exploring “desire to die” [57] statements by patients are vital parts of the assessment process. Desire to die statements [57] can be classified into three categories: suicidal intention, an expression of suffering, or as a means to cope. Statements about suicide or hastened death should be evaluated by a mental health provider to differentiate the patient’s meaning and intention. An appropriate multidisciplinary treatment plan should be developed with the patient to address the cause, whether this is a psychiatric disorder; distress and suffering; or despair and hopelessness [58]. Desire to die [57] statements as either expressions of suffering and as a means to cope should also be addressed by psychosocial services. Interventions will vary depending on the suicide assessment. Although rare, some patients may require hospitalization. A thorough assessment by a trained mental health provider can distinguish between those who are actively suicidal with a clear plan and intention from those who are suffering and may use this type of ideation as a coping strategy. This distinction is critical to effectively manage resources and to minimize unnecessary emergency room visits or hospitalizations. Medications to manage mood, in conjunction with cognitive behavioral therapy and existential/meaning based therapies, are effective interventions for patients who express feelings of worthlessness and hopelessness which can exacerbate thoughts of suicide. Developing a clear safety plan with the patient’s support system should also be initiated and then clearly documented.