Occupational Therapy In Health Care, 28(1):31–41, 2014 C 2014 by Informa Healthcare USA, Inc. Available online at http://informahealthcare.com/othc DOI: 10.3109/07380577.2013.867090
Contemporary Psychological Approaches to Life at the End of Life Brian D. Carpenter Department of Psychology, Washington University, St. Louis, Missouri, USA
ABSTRACT. When people have a serious life-limiting illness, physical symptoms are often prominent, both in the experience of the illness and in its treatment. No less important, however, are psychological symptoms. A holistic, bio-psycho-social-spiritual approach to quality of life near the end of life must address psychological distress of all types, including frank psychopathology, more moderate problems with living, and existential distress. Responding to mental health issues at the end of life requires (1) systematic and careful assessment, and (2) deployment of evidence-based treatments. In recent years, standardized assessment tools have been adapted or developed for use with people who have serious illness, and the same has happened with psychological treatments. Practitioners have several resources available to them. Given their practice orientation centered on meaningful engagement, occupational therapists can play an important role in responding to mental distress in patients with serious illness whose lives are becoming more circumscribed because of their medical condition or because of the mental distress itself. High-quality end-of-life care depends on scrupulous attention to the full spectrum of thoughts, feelings, and behaviors that unfold as death draws near. KEYWORDS.
End of life, mental health
Dying is hard work. It often involves uncomfortable physical symptoms, side effects from many potent medications, and the draining fatigue of having fought a protracted and painful and ultimately unsuccessful battle against an unwelcome illness. As much as people wish for a quick and painless death—How ubiquitous is our wish for a “massive heart attack on the golf course” or to “curl up in bed and die quietly in my sleep”?—and as much as people want to die at home, most people in America in the early 20th century die over a long period of time, in places such as hospitals and nursing homes (Broad et al., 2012). Some cancers progress slowly, respiratory disease can worsen over many years, and, of course, Alzheimer’s disease presents another kind of long, slow decline and is the most feared disease in recent public opinion polls (MetLife Foundation, 2011). Moreover, the health care system has been slow to respond to the desire to die at home, not to mention how Address correspondence to: Dr. Brian Carpenter, Department of Psychology, Washington University, Psychology, 1 Brookings Drive, CB 1125, St. Louis, MO 63130, USA (E-mail: [email protected]). (Received 11 November 2013; accepted 14 November 2013)
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culturally foreign it is now (though not always so) to imagine a close relative dying in a bedroom upstairs or a living room out in the open. So yes, the physical experience of dying can be a trial, and it undoubtedly deserves the full attention and comprehensive resources of any healthcare team working together to help a person with a serious life-limiting illness. Yet dying is, of course, an experience with many facets beyond the physical. At a practical level, some people confront financial and legal issues, as they determine how to pay for expensive medical care and lay out plans for their estate. More abstractly, for some people, facing the end of life brings to the fore weighty spiritual questions about the afterlife, the destiny of one’s soul, and one’s place in the universe. Likewise, psychological issues abound, as dying people try to come to terms with the choices they have made over their lives and to navigate the end of relationships and their associated joys and disappointments. Fortunately, in recent years, care for people who are dying has broadened and is increasingly holistic and interdisciplinary, recognizing the diverse facets of the dying experience (e.g., Berlinger et al., 2013; Doyle et al., 2011; Kuebler et al., 2007; Matzo & Sherman, 2010). Physicians and nurses still have a critical role to play in this context, but so, too, do social workers, chaplains, occupational therapists, physical therapists, psychologists, pharmacists, nutritionists, and other professionals who can make a contribution to a patient’s quality of life at the end of life. Yet still, in some ways, care at the end of life remains unbalanced. This paper addresses one area that, despite recent developments, remains relatively hidden at the end of life—mental health. I begin by describing the full spectrum of mental health at the end of life. Next I describe the bio-psycho-social-spiritual model of care at the end of life and interaction among its components. Finally, I identify major mental health issues that confront some patients at the end of life and discuss treatment options available to address them. By the close, the reader may have a greater appreciation of the importance of mental health within the context of very real and challenging physical, social, and spiritual issues that also deserve attention. The Continuum of Mental Health Like many complex human phenomena, mental health is challenging to define. When asked what “mental health” is, laypeople and professionals alike mention happiness, satisfaction with life, reaching one’s potential, an ability to make a contribution, consistency between values and actions, and a host of other descriptors that exemplify how broad mental health can be conceptualized. To cite one more formal definition, the World Health Organization characterizes mental health this way: “A state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community” (World Health Organization, 2013). Among the key features in this elegant, inclusive definition is the recognition that mental health is not simply the absence of psychological distress and dysfunction, but more importantly the presence of the ability to contribute meaningfully, to be generative, and to live in a way that maximizes one’s capacities. Note the substantial overlap with one characterization of the role of occupational therapy in cancer care: “to facilitate and enable an individual patient to achieve
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maximum functional performance, both physically and psychologically, in everyday living skills regardless of his or her life expectancy” (Penfold, 1996, p. 75). Both of these definitions are importantly distant from the pathological taxonomies of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V; APA, 2013) and even the International Classification of Diseases (ICD-10; WHO, 2010). However, it is worth noting, they are closer in spirit to the emerging International Classification of Functioning (ICF; WHO, 2002). Those taxonomies have their place, of course, because individuals do grapple with serious disruptions in thought, emotion, and behavior that we recognize as (1) more extreme variants of otherwise normal experience and (2) with concomitant disruption in functioning. Combining these two perspectives on mental health should encourage us to think of mental health on a continuum. On the one end is frank psychopathology, with its attendant symptoms and disruption. Further along the spectrum are individuals with subsyndromal psychiatric symptoms. Their symptoms are more mild, more circumscribed, and perhaps more transient, though still distressing and debilitating. Further along the continuum still are people who experience what we might call “problems with living.” They may experience occasional psychological distress and may have altered their life in some minor way because of their distress (e.g., given up hobbies, become more withdrawn), though that distress is relatively mild. Finally, on the other end of the spectrum are people who are flourishing, maximizing their potential and living a meaningful, satisfying life (see Figure 1). Naturally, people move along this continuum, hour by hour, day by day, year by year, and their position on the continuum is likely the result of a complex interplay among genetic vulnerabilities, biological disruptions, psychological processes, and social influences. One question about this spectrum of mental health, and the WHO definition in particular, however, is the extent to which they apply to the end-of-life context. Here is that definition again: “A state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his
FIGURE 1. The Continuum of Mental Health.
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community” (World Health Organization, 2013). Obviously some adjustments need to be made to apply this definition to people dealing with a life-limiting illness. Because of their illness, they may not be working. The “normal stresses” of life may be different in kind and character. The nature of the contribution they are making to their community may have changed, and the community itself with which they are interacting may have become more circumscribed. But these are just adjustments; the spirit of the definition may still hold. People can still strive to make a meaningful contribution, can still try to realize their potential; and in fact, those pursuits may take on special significance as mortality approaches. The full spectrum of mental health and mental illness exists for people near the end of life, and that full spectrum deserves attention. Fortunately, attention to that spectrum is a foundation of palliative care, one of the frameworks for caring for people with serious illness. The Bio-Psycho-Social-Spiritual Model of Palliative Care Palliative care is a philosophy of care, rather than a particular place or type of care setting. The emphasis within palliative care is on scrupulous attention to symptom management and quality of life. As defined by the World Health Organization (2002), palliative care is “[a]n approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Within the breadth of this definition you can note two important features. First, it makes the point to emphasize that care involves both patient and family, since it is that multiparty system that needs the attention of practitioners. Second, it acknowledges that physical, psychosocial, and spiritual problems deserve equal attention; quality of life in the context of serious illness depends on attention to all three domains of human experience. The WHO is not alone in advocating for a broad, holistic perspective in the care of people with serious illness. In their respective definitions of palliative care, the National Cancer Institute, the Center to Advance Palliative Care, and the American Academy of Hospice and Palliative Medicine all mention the importance of addressing psychological and spiritual concerns. So, too, does the American Occupational Therapy Association (AOTA) recognize the importance of a holistic, patient-centered approach when working with people who have life-limiting illness (AOTA, 2013). Indeed, its focus on helping people participate in meaningful activities that can enhance independence, self-efficacy, and competence represents an explicit goal of promoting wellness in its broadest sense (Jeyasingam et al., 2008). The bio-psycho-social-spiritual perspective has been a mainstay within the mental health field for several decades (Engel, 1977). In order to understand the etiology and maintenance of psychological distress, it is essential to understand biological, psychological, social, and spiritual contributions. Biological factors can include genetic predispositions, prenatal stressors, early exposure to environmental toxins, and disruptions in basic physiology in the central and peripheral nervous systems, endocrine system, and other body systems. Psychological factors that can play a role in mental well-being can include emotion regulation capacities, behavioral tendencies, cognitive resources and habits, and coping approaches. Social factors that can
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buffer an individual from or exacerbate distress include relationships with friends and family, characteristics of the local environment, and at a more macro level, public policies, and institutions. Finally, spiritual factors can also influence well-being, via faith practices and communities, tenets of an individual’s faith, and the broad worldview that a spiritual approach can engender. Understanding mental health in the most comprehensive way demands attention to all these factors. Here are two examples of how the bio-psycho-social-spiritual framework pertains to experiences near the end of life. First, consider peripheral neuropathy, a tingling or burning pain in the extremities that can occur for patients with many health conditions. Tissue and nerve damage play a role in the experience (bio), but so do a patient’s expectations about their ability to control their symptoms (psych), the sympathy and understanding they receive from caregivers (social), and the patient’s big-picture explanation of why this problem is happening to them and why now (i.e., what is the meaning and point of suffering) (spiritual). As a second example, consider a patient with severe illness who is faced with a complex and momentous choice about treatment at a time when the clarity of her thinking may be questionable. When establishing whether she has decision-making capacity, it would be important to know something about her neurological status, current medications, and nutritional status (bio). Also essential would be an understanding of the extent to which cognitive functions such as attention, concentration, memory, reasoning, and judgment are intact or compromised (psych). Input from family regarding treatment, and broad cultural values regarding the appropriateness of aggressive treatment might matter (social). And of course, understanding the patient’s belief system regarding the meaning of medical challenges and values in respect to lifesustaining technologies (or their refusal) would be crucial to weigh (spiritual). In these and other circumstances, a full understanding of a patient’s experience comes from an expansive consideration of multiple inputs. Psycho-social-spiritual distress at the end of life may be understandable. After all, patients are often experiencing severe symptoms that interfere with their ability to do the things most of us take for granted each day. Who wouldn’t be anxious at the thought of another round of nauseating palliative chemotherapy? Who wouldn’t be saddened by the prospect of not living to see a grandchild’s high school graduation? Who wouldn’t be pessimistic when they learn that all curative treatments options have been exhausted? These experiences are common for people near the end of their life. Yet there is a difference between common and normal. These experiences are not unusual; in fact they are frequent; and in some cases they are expected. But that does not mean they are acceptable; that they should be left unaddressed; that we leave people to cope with them on their own when it might be possible to alleviate their distress. Indeed, psycho-social-spiritual distress at the end of life contributes to excess disability and dysfunction, reducing quality of life unnecessarily (Bradley et al., 2000; Breitbart et al., 2011; Haley et al., 2003). Distress can:
• • • •
amplify pain, shortness of breath, nausea, and other symptoms; compromise treatment adherence; impair capacity for pleasure, meaning, and connection; reduces a person’s ability to do the emotional work of separating from family and friends;
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• cause anguish and worry when it is observed by family, friends, and professional caregivers; and • test the resolve and empathy of a care team who must witness another person’s suffering throughout their work. Addressing psychological distress at the end of life may not prolong life—in fact, there is little research evidence to suggest that it does—but psychological distress at the end of life reduces overall well-being: it makes people miserable, and that by itself should be sufficient justification for addressing it. How to do that is the focus next. Assessment of Psychological Distress Consider the psychological needs in this case. Mr. Eeby is a 75-year-old gentleman with Stage III lung cancer. In addition to the burden brought on by a protracted set of treatments for his cancer, he has several other significant health problems, including painful psoriasis, intervertebral disc syndrome, and occasional air hunger. In recent weeks, Mr. Eeby has withdrawn even further from his usual routine and activities. His wife of 55 years has raised concerns about his pessimism, low mood and apathy, as well as his periodic agitation and worry, and she appeals to his healthcare team to evaluate whether he might be depressed. In this case, the team must make a determination of where Mr. Eeby rests on the mental health continuum: Is he experiencing an episode of major depression, subsyndromal depressive symptoms, or mild distress as he reflects on his current prognosis and circumstances? One important consideration would be base rates for depression and depressive symptoms. Depending on the sample, the point prevalence for Major Depressive Disorder is approximately 5–15% of patients with advanced disease; 20–50% of patients have clinically significant symptoms (Wilson et al., 2009). Therefore, an accurate assessment is important in guiding any treatment choices. Several standardized instruments are available to clinicians, including the Hospital Anxiety and Depression Scale (HADS; Snaith, 2003; Zigmond & Snaith, 1983), the Patient Health Questionnaire (PHQ-9; Kroenke & Spitzer, 2002), and the Geriatric Depression Scale (GDS; Yesavage et al., 1982–1983). Anxiety is also common among patients with serious medical illness (Roth & Massie, 2009). In terms of assessments for anxiety, the Geriatric Anxiety Inventory (GAI; Pachana et al., 2007) and the Beck Anxiety Inventory (BAI; Beck & Steer, 1993) are options. One caveat associated with these instruments is that they may conflate psychiatric and physical symptoms. Low energy, poor appetite, and disrupted sleep may reflect depression or the effects of anemia, thyroid dysfunction, cancer, chemotherapy, and radiation. Muscle tension, heart palpitations, dizziness, and dyspnea may reflect anxiety or the effects of chronic obstructive pulmonary disease, hyperglycemia, hyperthyroidism, drug side effects, or treatments that evoke anxiety through operant conditioning (e.g., anxiety conditioned to occur prior to radiation treatment). Likewise, some overt behaviors might logically change with advanced illness (e.g., crying, dropping activities). Therefore, clinicians should use them with care and perhaps focus mainly on cognitive symptoms (i.e., hopelessness, dread, guilt), which may be more valid indicators of genuine distress when other symptoms complicate the clinical picture (see Anderson et al., 2007).
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Two diagnostic complexities that arise in end-of-life care deserve special note. One is making the distinction between depression and expected preparatory grief. Some depression-like symptoms are perhaps natural as death approaches, so to characterize those experiences as pathological overdramatizes what might be a normative process. Kasl-Godley (2011) provides a useful framework for differentiating the two, contrasting their presentation in several facets. Depression is unremitting, of constant intensity, with prominent anhedonia and worthlessness, and pessimism about the future. In contrast, preparatory grief is more intermittent, variable in its intensity, with some ability to experience of pleasure retained, along with preserved self image and some positive anticipation of future events. A second issue lies in differentiating a desire for hastened death from suicidal ideation. In both, people may feel and express a hope that death comes quickly. Symptom burden may be high, and patients may reach a state where the conditions of life are perceived as worse than death. When a patient says, “If I went to sleep tonight and didn’t wake up in the morning, I’d be fine with that,” it could reflect an acceptance of and a genuine readiness for death. Or it could reflect a type of passive suicidal ideation. As Kasl-Godley (2011) again notes, key differences include whether the thought is continuous and whether it is associated with a concrete plan to achieve the hastened death (both signs associated with goal-directed suicidal ideation). Items on the Schedule of Attitudes Toward Hastened Death (Rosenfeld et al., 1999) may be a useful starting point for a conversation with a patient verbalizing urgent thoughts and feelings about death. With their focus on meaningful engagement and purposeful activity, occupational therapists can provide important information that complements these structured assessments. Self-report scales tell us what a patient is experiencing (i.e., what symptoms, in what combination, for how long, and to what depth), whereas a sensitive face-to-face evaluation—by a skilled occupational therapist or other clinician—can explore why the symptoms may be present. A patient may be discouraged because she can no longer keep her house as clean and organized as she would like, and she resents the inferior job performed by a begrudgingly accepted housekeeper. Another patient may have withdrawn from a weekly card game because his vision has deteriorated and he doesn’t want to embarrass himself by making mistakes in front of his friends. Psychological distress arises in a multifaceted context, and a comprehensive evaluation recognizes that context and takes it into account to understand, first, how a patient has reached that particular point in their life, and then, what solutions might be appropriate to reduce their distress. Treatment of Psychological Distress When significant distress is apparent upon assessment, selection of a treatment approach depends, in part, on the severity of the symptoms and what the patient hopes to accomplish. In situations where the distress is relatively mild, transient, or focused on discrete and minor problems, it may be sufficient to offer empathic, supportive counseling; a kind ear may be all that’s needed in some situations. (And by no means do I intend to denigrate the power of basic listening! Consider this helpful exhortation I’ve heard from mentors: “Don’t just do something. Sit there!”) Here again, occupational therapists have much to contribute based on their practice competencies. Not only are they skilled, nonjudgmental listeners, but they are
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also adept at synthesizing information, generating solutions, and promoting a coordinated treatment plan that involves input from patients, family members, and healthcare professionals. As an example, take the case of Ms. Walters. This 41-year-old mother of three had transitioned to palliative care when her progressive multiple sclerosis had left her increasingly dependent on others for most of her activities of daily living. Living at home, Ms. Walters was supported by a loving partner, a sister who had arrived in town to help, and several paid caregivers. Her children were also involved, to the extent that was beneficial to them and appropriate to their level of development. Ms. Walters was quite tired most of the time, experienced numbness in her lower extremities, had occasional dizziness, and was occasionally incontinent of bowel and bladder. Although she tried to put on a brave face for her family, these physical symptoms left her feeling discouraged and despondent, and she began to withdraw from the people she cared about the most. An occupational therapist had been consulted to help Ms. Walters with her balance and gait, and also to provide guidance on effective ways to conserve energy and still accomplish as much self-care as possible. During the course of the intake assessment, the occupational therapist learned about Ms. Walter’s lifelong affection for horses. She had ridden competitively up until she had her first child, and she spoke with the therapist about the joy she used to feel outside in the early morning, the frost on the ground, the wind in her hair, and the quiet intimacy she developed with her horse. She said she felt “centered” when she was with her horse; that “the world just made more sense when I was riding.” In consultation with Ms. Walters, her partner, and other members of her care team, the occupational therapist developed a plan to enable Ms. Walters to visit a nearby stable, if not to ride, then at least to be near horses again. The therapist worked with Ms. Walters to improve her balance and steady her gait, and the therapist provided helpful information to her family about how best to assist Ms. Walter in their home and on outings, including those to the stable. Reconnecting Ms. Walters with this valued activity was not a panacea—many issues remained, and her health continued to decline—but the occupational therapist had facilitated one intervention that improved the quality of her life and eased her distress. Occupational therapists can educate patients on how to manage symptoms (e.g., pain, dyspnea, anxiety), adjust routines to maximize energy, make optimal use of structural supports in the residence, maintain healthy diet and exercise practices, facilitate leisure pursuits, and communicate effectively with other healthcare professionals (AOTA, 2013). Occupational therapists can also identify when more severe symptoms might necessitate referral for specialized mental health evaluation and treatment. Knowing when to refer to another professional, and knowing how to facilitate that referral, is itself a valuable skill. For treatment of psychopathology or subsyndromal symptoms, well-established treatments may be useful, even though they have not been validated extensively (if at all) when used with patients near the end of life. Cognitive-behavioral, interpersonal, psychodynamic, and client-centered approaches are reasonable, though as is so often the case, more research is needed to determine whether these approaches are effective with seriously ill patients and whether modifications are required in end-of-life care (Kasl-Godley, 2011). Other, perhaps less traditional, psychotherapies may be, by virtue of their theoretical foundations, particularly relevant to care
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at the end of life. Acceptance and Commitment Therapy (ACT; Angiola & Bowen, 2013), for example, with its emphasis on acknowledging symptoms without the insistence that they disappear, may be helpful for patients whose medical conditions bring physical and psychological experiences that are real, persistent, may not improve, and may even get worse. As another example, existential therapy is an approach with obvious resonance given the proximity of death and the immediate challenge of coming to terms with a foreshortened future and impending mortality. Here again, the evidence base for these approaches is just beginning to emerge in the context of end-of-life care (e.g., Fegg et al., 2013; Spira, 2000). In recent years, several new psychotherapies have emerged that have been designed specifically to address the challenges faced by patients near the end of life. Meaning-Centered Group Therapy (MCGT; Breitbart, 2010) has its theoretical foundations in the writings of Victor Frankl and combines existential and cognitivebehavioral techniques to help very ill patients restore meaning to their life. In its current iteration, MCGT involves eight, weekly group sessions, 90 min in length that include didactics, discussion, and experiential exercises to help patients understand their illness and sustain hope and meaning (Greenstein & Breitbart, 2000). A recent evaluation of MCGT found significant improvement in sense of meaning, faith, and spiritual well-being and significant decline in hopelessness and a desire for death (Breitbart et al., 2010). Of note, no significant changes were seen in optimism or anxiety. Another newer treatment option is Dignity Therapy (DT; Chochinov et al., 2005), an individual psychotherapy which, like MCGT, is not designed to address a specific psychopathology, but rather to promote psychological well being amidst the many physical and psychological challenges of living with a life-limiting illness. Dignity Therapy is based on a guided set of questions posed by the therapist, something like a structured interview to help patients identify and explore past accomplishments, values, and goals. Themes that are addressed include generativity, continuity of self, role preservation, maintenance of pride, hopefulness, and concerns about the aftermath of one’s death. Examples of probes used in DT include: What parts of your life do you remember the most or think are most important? When did you feel most alive? What specific things do you want your family to know about you or remember? What are your most important roles and accomplishments; what are you most proud of? Are there things that need to be said, or need to be said again? What words of advice would you like to pass on? DT sessions with patients can be recorded, and a transcript can be used to create a “legacy document” that captures the patient’s life in a form that can be shared and retained by family members. As a set, these novel treatments are impressive and much needed developments that deserve wider evaluation and implementation. CONCLUSION Clinicians working with people who are dying are often asked, “Isn’t that work depressing? All your patients eventually die.” To be fair, everyone eventually dies, and clinical work with people who are dying is, on the contrary, often uplifting and life affirming. For the patients themselves, however, the task of dying is immense and demands a full marshaling of physical, psychological, social, and spiritual resources
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if it is to be done well. Psychological distress can interfere with that process and therefore deserves rapid and comprehensive intervention. Life continues to happen right up until the time of death. Therefore, quality of life matters up until that time too. Addressing psychological distress, in all its manifestations and degrees, is essential if we hope to achieve compassionate care for individuals approaching life’s last challenge. Declaration of interest: The author reports no conflict of interest. The author alone is responsible for the content and writing of this paper.
ABOUT THE AUTHOR Brian D. Carpenter, Department of Psychology, Washington University, St. Louis, Missouri, USA. REFERENCES American Occupational Therapy Association. (2013). The role of occupational therapy in palliative care. Retrieved from http://www.aota.org/-/media/Corporate/Files/AboutOT/ Professionals/WhatIsOT/PA/Facts/FactSheet PalliativeCare.ashx American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author. Anderson JR, Mihaly MS, Rosenfeld B, & Werth JL. (2007). End-of-life issues for mental health providers. Washington, DC: American Psychological Association. Angiola JE, & Bowen AM. (2013). Quality of life in advanced cancer: An acceptance and commitment therapy view. The Counseling Psychologist, 41, 313–335. Beck AT, & Steer RA. (1993). Beck Anxiety Inventory manual. San Antonio, TX: Harcourt Brace and Company. Berlinger N, Jennings B, & Wolf SM. (2013). The Hastings Center guidelines for decisions on life-sustaining treatment and care near the end of life. New York: Oxford University Press. Bradley EH, Fried TR, Kasl SV, & Idler E. (2000). Quality-of-life trajectories of elders in the end of life. Annual Review of Gerontology and Geriatrics, 20, 64–96. Breitbart W, Max H, Chochinov HM, & Passik S. (2011). Psychiatric aspects of palliative care. In D Doyle, GWC Hanks, & N MacDonald (Eds.), Oxford textbook of palliative medicine (pp. 933–954). Oxford: Oxford University Press. Breitbart W, Rosenfeld B, Gibson C, Pessin H, Poppito S, Nelson, C, et al. (2010). Meaningcentered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psychooncology, 19, 21–28. doi: 10.1002/pon.1556. Broad JB, Gott M, Kim H, Boyd M, Chen H, & Connolly MJ. (2013). Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics. International Journal of Public Health, 58, 257–267. DOI: 10.1007/s00038-012-0394-5 Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, & Harlos M. (2005). Dignity Therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology, 23, 5520–5525. Doyle E, Hanks GWC, & MacDonald N. (2011). Oxford textbook of palliative medicine (3rd ed.). Oxford: Oxford University Press. Engel GL. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196, 129–136. Fegg MJ, Brandstatter M, Kogler M, Hauke G, Rechenberg-Winter P, Fensterer V, et al. (2013). Existential behavioural therapy for informal caregivers of palliative patients: A randomized controlled trial. Psychooncology, 22, 29–32.
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Contemporary Psychological Approaches to Life at the End of Life Brian D. Carpenter Department of Psychology, Washington University, St. Louis, Missouri, USA
ABSTRACT. When people have a serious life-limiting illness, physical symptoms are often prominent, both in the experience of the illness and in its treatment. No less important, however, are psychological symptoms. A holistic, bio-psycho-social-spiritual approach to quality of life near the end of life must address psychological distress of all types, including frank psychopathology, more moderate problems with living, and existential distress. Responding to mental health issues at the end of life requires (1) systematic and careful assessment, and (2) deployment of evidence-based treatments. In recent years, standardized assessment tools have been adapted or developed for use with people who have serious illness, and the same has happened with psychological treatments. Practitioners have several resources available to them. Given their practice orientation centered on meaningful engagement, occupational therapists can play an important role in responding to mental distress in patients with serious illness whose lives are becoming more circumscribed because of their medical condition or because of the mental distress itself. High-quality end-of-life care depends on scrupulous attention to the full spectrum of thoughts, feelings, and behaviors that unfold as death draws near. KEYWORDS.
End of life, mental health
Dying is hard work. It often involves uncomfortable physical symptoms, side effects from many potent medications, and the draining fatigue of having fought a protracted and painful and ultimately unsuccessful battle against an unwelcome illness. As much as people wish for a quick and painless death—How ubiquitous is our wish for a “massive heart attack on the golf course” or to “curl up in bed and die quietly in my sleep”?—and as much as people want to die at home, most people in America in the early 20th century die over a long period of time, in places such as hospitals and nursing homes (Broad et al., 2012). Some cancers progress slowly, respiratory disease can worsen over many years, and, of course, Alzheimer’s disease presents another kind of long, slow decline and is the most feared disease in recent public opinion polls (MetLife Foundation, 2011). Moreover, the health care system has been slow to respond to the desire to die at home, not to mention how Address correspondence to: Dr. Brian Carpenter, Department of Psychology, Washington University, Psychology, 1 Brookings Drive, CB 1125, St. Louis, MO 63130, USA (E-mail: [email protected]). (Received 11 November 2013; accepted 14 November 2013)
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culturally foreign it is now (though not always so) to imagine a close relative dying in a bedroom upstairs or a living room out in the open. So yes, the physical experience of dying can be a trial, and it undoubtedly deserves the full attention and comprehensive resources of any healthcare team working together to help a person with a serious life-limiting illness. Yet dying is, of course, an experience with many facets beyond the physical. At a practical level, some people confront financial and legal issues, as they determine how to pay for expensive medical care and lay out plans for their estate. More abstractly, for some people, facing the end of life brings to the fore weighty spiritual questions about the afterlife, the destiny of one’s soul, and one’s place in the universe. Likewise, psychological issues abound, as dying people try to come to terms with the choices they have made over their lives and to navigate the end of relationships and their associated joys and disappointments. Fortunately, in recent years, care for people who are dying has broadened and is increasingly holistic and interdisciplinary, recognizing the diverse facets of the dying experience (e.g., Berlinger et al., 2013; Doyle et al., 2011; Kuebler et al., 2007; Matzo & Sherman, 2010). Physicians and nurses still have a critical role to play in this context, but so, too, do social workers, chaplains, occupational therapists, physical therapists, psychologists, pharmacists, nutritionists, and other professionals who can make a contribution to a patient’s quality of life at the end of life. Yet still, in some ways, care at the end of life remains unbalanced. This paper addresses one area that, despite recent developments, remains relatively hidden at the end of life—mental health. I begin by describing the full spectrum of mental health at the end of life. Next I describe the bio-psycho-social-spiritual model of care at the end of life and interaction among its components. Finally, I identify major mental health issues that confront some patients at the end of life and discuss treatment options available to address them. By the close, the reader may have a greater appreciation of the importance of mental health within the context of very real and challenging physical, social, and spiritual issues that also deserve attention. The Continuum of Mental Health Like many complex human phenomena, mental health is challenging to define. When asked what “mental health” is, laypeople and professionals alike mention happiness, satisfaction with life, reaching one’s potential, an ability to make a contribution, consistency between values and actions, and a host of other descriptors that exemplify how broad mental health can be conceptualized. To cite one more formal definition, the World Health Organization characterizes mental health this way: “A state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community” (World Health Organization, 2013). Among the key features in this elegant, inclusive definition is the recognition that mental health is not simply the absence of psychological distress and dysfunction, but more importantly the presence of the ability to contribute meaningfully, to be generative, and to live in a way that maximizes one’s capacities. Note the substantial overlap with one characterization of the role of occupational therapy in cancer care: “to facilitate and enable an individual patient to achieve
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maximum functional performance, both physically and psychologically, in everyday living skills regardless of his or her life expectancy” (Penfold, 1996, p. 75). Both of these definitions are importantly distant from the pathological taxonomies of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V; APA, 2013) and even the International Classification of Diseases (ICD-10; WHO, 2010). However, it is worth noting, they are closer in spirit to the emerging International Classification of Functioning (ICF; WHO, 2002). Those taxonomies have their place, of course, because individuals do grapple with serious disruptions in thought, emotion, and behavior that we recognize as (1) more extreme variants of otherwise normal experience and (2) with concomitant disruption in functioning. Combining these two perspectives on mental health should encourage us to think of mental health on a continuum. On the one end is frank psychopathology, with its attendant symptoms and disruption. Further along the spectrum are individuals with subsyndromal psychiatric symptoms. Their symptoms are more mild, more circumscribed, and perhaps more transient, though still distressing and debilitating. Further along the continuum still are people who experience what we might call “problems with living.” They may experience occasional psychological distress and may have altered their life in some minor way because of their distress (e.g., given up hobbies, become more withdrawn), though that distress is relatively mild. Finally, on the other end of the spectrum are people who are flourishing, maximizing their potential and living a meaningful, satisfying life (see Figure 1). Naturally, people move along this continuum, hour by hour, day by day, year by year, and their position on the continuum is likely the result of a complex interplay among genetic vulnerabilities, biological disruptions, psychological processes, and social influences. One question about this spectrum of mental health, and the WHO definition in particular, however, is the extent to which they apply to the end-of-life context. Here is that definition again: “A state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his
FIGURE 1. The Continuum of Mental Health.
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community” (World Health Organization, 2013). Obviously some adjustments need to be made to apply this definition to people dealing with a life-limiting illness. Because of their illness, they may not be working. The “normal stresses” of life may be different in kind and character. The nature of the contribution they are making to their community may have changed, and the community itself with which they are interacting may have become more circumscribed. But these are just adjustments; the spirit of the definition may still hold. People can still strive to make a meaningful contribution, can still try to realize their potential; and in fact, those pursuits may take on special significance as mortality approaches. The full spectrum of mental health and mental illness exists for people near the end of life, and that full spectrum deserves attention. Fortunately, attention to that spectrum is a foundation of palliative care, one of the frameworks for caring for people with serious illness. The Bio-Psycho-Social-Spiritual Model of Palliative Care Palliative care is a philosophy of care, rather than a particular place or type of care setting. The emphasis within palliative care is on scrupulous attention to symptom management and quality of life. As defined by the World Health Organization (2002), palliative care is “[a]n approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Within the breadth of this definition you can note two important features. First, it makes the point to emphasize that care involves both patient and family, since it is that multiparty system that needs the attention of practitioners. Second, it acknowledges that physical, psychosocial, and spiritual problems deserve equal attention; quality of life in the context of serious illness depends on attention to all three domains of human experience. The WHO is not alone in advocating for a broad, holistic perspective in the care of people with serious illness. In their respective definitions of palliative care, the National Cancer Institute, the Center to Advance Palliative Care, and the American Academy of Hospice and Palliative Medicine all mention the importance of addressing psychological and spiritual concerns. So, too, does the American Occupational Therapy Association (AOTA) recognize the importance of a holistic, patient-centered approach when working with people who have life-limiting illness (AOTA, 2013). Indeed, its focus on helping people participate in meaningful activities that can enhance independence, self-efficacy, and competence represents an explicit goal of promoting wellness in its broadest sense (Jeyasingam et al., 2008). The bio-psycho-social-spiritual perspective has been a mainstay within the mental health field for several decades (Engel, 1977). In order to understand the etiology and maintenance of psychological distress, it is essential to understand biological, psychological, social, and spiritual contributions. Biological factors can include genetic predispositions, prenatal stressors, early exposure to environmental toxins, and disruptions in basic physiology in the central and peripheral nervous systems, endocrine system, and other body systems. Psychological factors that can play a role in mental well-being can include emotion regulation capacities, behavioral tendencies, cognitive resources and habits, and coping approaches. Social factors that can
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buffer an individual from or exacerbate distress include relationships with friends and family, characteristics of the local environment, and at a more macro level, public policies, and institutions. Finally, spiritual factors can also influence well-being, via faith practices and communities, tenets of an individual’s faith, and the broad worldview that a spiritual approach can engender. Understanding mental health in the most comprehensive way demands attention to all these factors. Here are two examples of how the bio-psycho-social-spiritual framework pertains to experiences near the end of life. First, consider peripheral neuropathy, a tingling or burning pain in the extremities that can occur for patients with many health conditions. Tissue and nerve damage play a role in the experience (bio), but so do a patient’s expectations about their ability to control their symptoms (psych), the sympathy and understanding they receive from caregivers (social), and the patient’s big-picture explanation of why this problem is happening to them and why now (i.e., what is the meaning and point of suffering) (spiritual). As a second example, consider a patient with severe illness who is faced with a complex and momentous choice about treatment at a time when the clarity of her thinking may be questionable. When establishing whether she has decision-making capacity, it would be important to know something about her neurological status, current medications, and nutritional status (bio). Also essential would be an understanding of the extent to which cognitive functions such as attention, concentration, memory, reasoning, and judgment are intact or compromised (psych). Input from family regarding treatment, and broad cultural values regarding the appropriateness of aggressive treatment might matter (social). And of course, understanding the patient’s belief system regarding the meaning of medical challenges and values in respect to lifesustaining technologies (or their refusal) would be crucial to weigh (spiritual). In these and other circumstances, a full understanding of a patient’s experience comes from an expansive consideration of multiple inputs. Psycho-social-spiritual distress at the end of life may be understandable. After all, patients are often experiencing severe symptoms that interfere with their ability to do the things most of us take for granted each day. Who wouldn’t be anxious at the thought of another round of nauseating palliative chemotherapy? Who wouldn’t be saddened by the prospect of not living to see a grandchild’s high school graduation? Who wouldn’t be pessimistic when they learn that all curative treatments options have been exhausted? These experiences are common for people near the end of their life. Yet there is a difference between common and normal. These experiences are not unusual; in fact they are frequent; and in some cases they are expected. But that does not mean they are acceptable; that they should be left unaddressed; that we leave people to cope with them on their own when it might be possible to alleviate their distress. Indeed, psycho-social-spiritual distress at the end of life contributes to excess disability and dysfunction, reducing quality of life unnecessarily (Bradley et al., 2000; Breitbart et al., 2011; Haley et al., 2003). Distress can:
• • • •
amplify pain, shortness of breath, nausea, and other symptoms; compromise treatment adherence; impair capacity for pleasure, meaning, and connection; reduces a person’s ability to do the emotional work of separating from family and friends;
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• cause anguish and worry when it is observed by family, friends, and professional caregivers; and • test the resolve and empathy of a care team who must witness another person’s suffering throughout their work. Addressing psychological distress at the end of life may not prolong life—in fact, there is little research evidence to suggest that it does—but psychological distress at the end of life reduces overall well-being: it makes people miserable, and that by itself should be sufficient justification for addressing it. How to do that is the focus next. Assessment of Psychological Distress Consider the psychological needs in this case. Mr. Eeby is a 75-year-old gentleman with Stage III lung cancer. In addition to the burden brought on by a protracted set of treatments for his cancer, he has several other significant health problems, including painful psoriasis, intervertebral disc syndrome, and occasional air hunger. In recent weeks, Mr. Eeby has withdrawn even further from his usual routine and activities. His wife of 55 years has raised concerns about his pessimism, low mood and apathy, as well as his periodic agitation and worry, and she appeals to his healthcare team to evaluate whether he might be depressed. In this case, the team must make a determination of where Mr. Eeby rests on the mental health continuum: Is he experiencing an episode of major depression, subsyndromal depressive symptoms, or mild distress as he reflects on his current prognosis and circumstances? One important consideration would be base rates for depression and depressive symptoms. Depending on the sample, the point prevalence for Major Depressive Disorder is approximately 5–15% of patients with advanced disease; 20–50% of patients have clinically significant symptoms (Wilson et al., 2009). Therefore, an accurate assessment is important in guiding any treatment choices. Several standardized instruments are available to clinicians, including the Hospital Anxiety and Depression Scale (HADS; Snaith, 2003; Zigmond & Snaith, 1983), the Patient Health Questionnaire (PHQ-9; Kroenke & Spitzer, 2002), and the Geriatric Depression Scale (GDS; Yesavage et al., 1982–1983). Anxiety is also common among patients with serious medical illness (Roth & Massie, 2009). In terms of assessments for anxiety, the Geriatric Anxiety Inventory (GAI; Pachana et al., 2007) and the Beck Anxiety Inventory (BAI; Beck & Steer, 1993) are options. One caveat associated with these instruments is that they may conflate psychiatric and physical symptoms. Low energy, poor appetite, and disrupted sleep may reflect depression or the effects of anemia, thyroid dysfunction, cancer, chemotherapy, and radiation. Muscle tension, heart palpitations, dizziness, and dyspnea may reflect anxiety or the effects of chronic obstructive pulmonary disease, hyperglycemia, hyperthyroidism, drug side effects, or treatments that evoke anxiety through operant conditioning (e.g., anxiety conditioned to occur prior to radiation treatment). Likewise, some overt behaviors might logically change with advanced illness (e.g., crying, dropping activities). Therefore, clinicians should use them with care and perhaps focus mainly on cognitive symptoms (i.e., hopelessness, dread, guilt), which may be more valid indicators of genuine distress when other symptoms complicate the clinical picture (see Anderson et al., 2007).
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Two diagnostic complexities that arise in end-of-life care deserve special note. One is making the distinction between depression and expected preparatory grief. Some depression-like symptoms are perhaps natural as death approaches, so to characterize those experiences as pathological overdramatizes what might be a normative process. Kasl-Godley (2011) provides a useful framework for differentiating the two, contrasting their presentation in several facets. Depression is unremitting, of constant intensity, with prominent anhedonia and worthlessness, and pessimism about the future. In contrast, preparatory grief is more intermittent, variable in its intensity, with some ability to experience of pleasure retained, along with preserved self image and some positive anticipation of future events. A second issue lies in differentiating a desire for hastened death from suicidal ideation. In both, people may feel and express a hope that death comes quickly. Symptom burden may be high, and patients may reach a state where the conditions of life are perceived as worse than death. When a patient says, “If I went to sleep tonight and didn’t wake up in the morning, I’d be fine with that,” it could reflect an acceptance of and a genuine readiness for death. Or it could reflect a type of passive suicidal ideation. As Kasl-Godley (2011) again notes, key differences include whether the thought is continuous and whether it is associated with a concrete plan to achieve the hastened death (both signs associated with goal-directed suicidal ideation). Items on the Schedule of Attitudes Toward Hastened Death (Rosenfeld et al., 1999) may be a useful starting point for a conversation with a patient verbalizing urgent thoughts and feelings about death. With their focus on meaningful engagement and purposeful activity, occupational therapists can provide important information that complements these structured assessments. Self-report scales tell us what a patient is experiencing (i.e., what symptoms, in what combination, for how long, and to what depth), whereas a sensitive face-to-face evaluation—by a skilled occupational therapist or other clinician—can explore why the symptoms may be present. A patient may be discouraged because she can no longer keep her house as clean and organized as she would like, and she resents the inferior job performed by a begrudgingly accepted housekeeper. Another patient may have withdrawn from a weekly card game because his vision has deteriorated and he doesn’t want to embarrass himself by making mistakes in front of his friends. Psychological distress arises in a multifaceted context, and a comprehensive evaluation recognizes that context and takes it into account to understand, first, how a patient has reached that particular point in their life, and then, what solutions might be appropriate to reduce their distress. Treatment of Psychological Distress When significant distress is apparent upon assessment, selection of a treatment approach depends, in part, on the severity of the symptoms and what the patient hopes to accomplish. In situations where the distress is relatively mild, transient, or focused on discrete and minor problems, it may be sufficient to offer empathic, supportive counseling; a kind ear may be all that’s needed in some situations. (And by no means do I intend to denigrate the power of basic listening! Consider this helpful exhortation I’ve heard from mentors: “Don’t just do something. Sit there!”) Here again, occupational therapists have much to contribute based on their practice competencies. Not only are they skilled, nonjudgmental listeners, but they are
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also adept at synthesizing information, generating solutions, and promoting a coordinated treatment plan that involves input from patients, family members, and healthcare professionals. As an example, take the case of Ms. Walters. This 41-year-old mother of three had transitioned to palliative care when her progressive multiple sclerosis had left her increasingly dependent on others for most of her activities of daily living. Living at home, Ms. Walters was supported by a loving partner, a sister who had arrived in town to help, and several paid caregivers. Her children were also involved, to the extent that was beneficial to them and appropriate to their level of development. Ms. Walters was quite tired most of the time, experienced numbness in her lower extremities, had occasional dizziness, and was occasionally incontinent of bowel and bladder. Although she tried to put on a brave face for her family, these physical symptoms left her feeling discouraged and despondent, and she began to withdraw from the people she cared about the most. An occupational therapist had been consulted to help Ms. Walters with her balance and gait, and also to provide guidance on effective ways to conserve energy and still accomplish as much self-care as possible. During the course of the intake assessment, the occupational therapist learned about Ms. Walter’s lifelong affection for horses. She had ridden competitively up until she had her first child, and she spoke with the therapist about the joy she used to feel outside in the early morning, the frost on the ground, the wind in her hair, and the quiet intimacy she developed with her horse. She said she felt “centered” when she was with her horse; that “the world just made more sense when I was riding.” In consultation with Ms. Walters, her partner, and other members of her care team, the occupational therapist developed a plan to enable Ms. Walters to visit a nearby stable, if not to ride, then at least to be near horses again. The therapist worked with Ms. Walters to improve her balance and steady her gait, and the therapist provided helpful information to her family about how best to assist Ms. Walter in their home and on outings, including those to the stable. Reconnecting Ms. Walters with this valued activity was not a panacea—many issues remained, and her health continued to decline—but the occupational therapist had facilitated one intervention that improved the quality of her life and eased her distress. Occupational therapists can educate patients on how to manage symptoms (e.g., pain, dyspnea, anxiety), adjust routines to maximize energy, make optimal use of structural supports in the residence, maintain healthy diet and exercise practices, facilitate leisure pursuits, and communicate effectively with other healthcare professionals (AOTA, 2013). Occupational therapists can also identify when more severe symptoms might necessitate referral for specialized mental health evaluation and treatment. Knowing when to refer to another professional, and knowing how to facilitate that referral, is itself a valuable skill. For treatment of psychopathology or subsyndromal symptoms, well-established treatments may be useful, even though they have not been validated extensively (if at all) when used with patients near the end of life. Cognitive-behavioral, interpersonal, psychodynamic, and client-centered approaches are reasonable, though as is so often the case, more research is needed to determine whether these approaches are effective with seriously ill patients and whether modifications are required in end-of-life care (Kasl-Godley, 2011). Other, perhaps less traditional, psychotherapies may be, by virtue of their theoretical foundations, particularly relevant to care
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at the end of life. Acceptance and Commitment Therapy (ACT; Angiola & Bowen, 2013), for example, with its emphasis on acknowledging symptoms without the insistence that they disappear, may be helpful for patients whose medical conditions bring physical and psychological experiences that are real, persistent, may not improve, and may even get worse. As another example, existential therapy is an approach with obvious resonance given the proximity of death and the immediate challenge of coming to terms with a foreshortened future and impending mortality. Here again, the evidence base for these approaches is just beginning to emerge in the context of end-of-life care (e.g., Fegg et al., 2013; Spira, 2000). In recent years, several new psychotherapies have emerged that have been designed specifically to address the challenges faced by patients near the end of life. Meaning-Centered Group Therapy (MCGT; Breitbart, 2010) has its theoretical foundations in the writings of Victor Frankl and combines existential and cognitivebehavioral techniques to help very ill patients restore meaning to their life. In its current iteration, MCGT involves eight, weekly group sessions, 90 min in length that include didactics, discussion, and experiential exercises to help patients understand their illness and sustain hope and meaning (Greenstein & Breitbart, 2000). A recent evaluation of MCGT found significant improvement in sense of meaning, faith, and spiritual well-being and significant decline in hopelessness and a desire for death (Breitbart et al., 2010). Of note, no significant changes were seen in optimism or anxiety. Another newer treatment option is Dignity Therapy (DT; Chochinov et al., 2005), an individual psychotherapy which, like MCGT, is not designed to address a specific psychopathology, but rather to promote psychological well being amidst the many physical and psychological challenges of living with a life-limiting illness. Dignity Therapy is based on a guided set of questions posed by the therapist, something like a structured interview to help patients identify and explore past accomplishments, values, and goals. Themes that are addressed include generativity, continuity of self, role preservation, maintenance of pride, hopefulness, and concerns about the aftermath of one’s death. Examples of probes used in DT include: What parts of your life do you remember the most or think are most important? When did you feel most alive? What specific things do you want your family to know about you or remember? What are your most important roles and accomplishments; what are you most proud of? Are there things that need to be said, or need to be said again? What words of advice would you like to pass on? DT sessions with patients can be recorded, and a transcript can be used to create a “legacy document” that captures the patient’s life in a form that can be shared and retained by family members. As a set, these novel treatments are impressive and much needed developments that deserve wider evaluation and implementation. CONCLUSION Clinicians working with people who are dying are often asked, “Isn’t that work depressing? All your patients eventually die.” To be fair, everyone eventually dies, and clinical work with people who are dying is, on the contrary, often uplifting and life affirming. For the patients themselves, however, the task of dying is immense and demands a full marshaling of physical, psychological, social, and spiritual resources
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if it is to be done well. Psychological distress can interfere with that process and therefore deserves rapid and comprehensive intervention. Life continues to happen right up until the time of death. Therefore, quality of life matters up until that time too. Addressing psychological distress, in all its manifestations and degrees, is essential if we hope to achieve compassionate care for individuals approaching life’s last challenge. Declaration of interest: The author reports no conflict of interest. The author alone is responsible for the content and writing of this paper.
ABOUT THE AUTHOR Brian D. Carpenter, Department of Psychology, Washington University, St. Louis, Missouri, USA. REFERENCES American Occupational Therapy Association. (2013). The role of occupational therapy in palliative care. Retrieved from http://www.aota.org/-/media/Corporate/Files/AboutOT/ Professionals/WhatIsOT/PA/Facts/FactSheet PalliativeCare.ashx American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author. Anderson JR, Mihaly MS, Rosenfeld B, & Werth JL. (2007). End-of-life issues for mental health providers. Washington, DC: American Psychological Association. Angiola JE, & Bowen AM. (2013). Quality of life in advanced cancer: An acceptance and commitment therapy view. The Counseling Psychologist, 41, 313–335. Beck AT, & Steer RA. (1993). Beck Anxiety Inventory manual. San Antonio, TX: Harcourt Brace and Company. Berlinger N, Jennings B, & Wolf SM. (2013). The Hastings Center guidelines for decisions on life-sustaining treatment and care near the end of life. New York: Oxford University Press. Bradley EH, Fried TR, Kasl SV, & Idler E. (2000). Quality-of-life trajectories of elders in the end of life. Annual Review of Gerontology and Geriatrics, 20, 64–96. Breitbart W, Max H, Chochinov HM, & Passik S. (2011). Psychiatric aspects of palliative care. In D Doyle, GWC Hanks, & N MacDonald (Eds.), Oxford textbook of palliative medicine (pp. 933–954). Oxford: Oxford University Press. Breitbart W, Rosenfeld B, Gibson C, Pessin H, Poppito S, Nelson, C, et al. (2010). Meaningcentered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psychooncology, 19, 21–28. doi: 10.1002/pon.1556. Broad JB, Gott M, Kim H, Boyd M, Chen H, & Connolly MJ. (2013). Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics. International Journal of Public Health, 58, 257–267. DOI: 10.1007/s00038-012-0394-5 Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, & Harlos M. (2005). Dignity Therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology, 23, 5520–5525. Doyle E, Hanks GWC, & MacDonald N. (2011). Oxford textbook of palliative medicine (3rd ed.). Oxford: Oxford University Press. Engel GL. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196, 129–136. Fegg MJ, Brandstatter M, Kogler M, Hauke G, Rechenberg-Winter P, Fensterer V, et al. (2013). Existential behavioural therapy for informal caregivers of palliative patients: A randomized controlled trial. Psychooncology, 22, 29–32.
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Copyright of Occupational Therapy in Health Care is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
