By 2030, due to the aging of the baby boomers, the U.S. Census Bureau predicts that nearly one in five people will be 65 or older—a substantial increase from the 13% of the population that was 65 or older in 2010. This population of older adults is projected to have increased needs for mental health care, which the current workforce is inadequate to meet (1, 2). For example, by the year 2050, an estimated 13 million adults will suffer from Alzheimer’s disease (AD) (3). Many of these individuals will develop behavioral and psychological symptoms as their disease progresses. Depressive disorders remain underdetected in older adults, and despite years of attention to the issue of undertreatment of depression in the older adult population, this continues to be a problem (1, 4). Ongoing stigma about mental health treatment on the part of patients, as well as misconceptions and inadequate training regarding depression on the part of health care providers, likely contribute to the lack of identification and treatment of depressive disorders in older adults (5).
Thus, although many older adults will age “successfully,” with intact cognition and stable mental health, a substantial minority will experience new onset psychiatric disorders, recurrence of disorders that initially developed earlier in life, or psychiatric manifestations of neurologic and medical disorders and their treatment.
Special ethical challenges emerge at the intersection of aging, comorbid medical illnesses, and psychiatric illnesses. Although a complete discussion of these issues is beyond the scope of this column, two topics that have received relatively little attention in the literature—financial exploitation and ethical issues in hospice care for patients with psychiatric disorders—will be discussed through the use of case examples.
Ms. B is a 78-year-old divorced Caucasian woman who lives alone. She is treated for hypertension by her primary care provider (PCP) and is not currently under psychiatric care or receiving any psychiatric medications. The PCP, when asking routine questions about the patient’s activities of daily living, learns that the patient has a male “visitor” who is staying with her. The PCP also observes that the patient is dressed much more brightly than usual and appears in very high spirits. She becomes concerned about the patient’s judgment when the patient says that she bought an airplane ticket for her visitor. The PCP calls a psychiatric colleague and asks for the patient to be evaluated for dementia. The PCP had not previously noted any concerns about cognitive impairment or mood symptoms, although she has only seen the patient twice previously because the patient moved from out-of-state 2 years ago.
The psychiatrist evaluates the patient and diagnoses bipolar I disorder, current episode manic, without psychotic features. The psychiatrist learns that the patient had been treated in her forties for depression and likely had postpartum depression in her thirties. The psychiatrist also performs the Montreal Cognitive Assessment (MoCA) (6). The patient scores 23 out of 30: she misses 4 points on visuospatial/executive domain, 1 point on attention, and 2 points on delayed recall. This score is below the normal range of ≥ 26/30.
The psychiatrist learns in talking with the patient (who presents all information in a cheerful, almost carefree, way and appears unconcerned about her situation) that she has spent over $80,000 of her $400,000 in savings (estimated by the patient in a vague way) playing lotteries and sweepstakes and that the patient would give money to people who would call on the phone because “They told me I would win; I just had to keep sending in money.” She states nonchalantly, “I guess I just don't have good luck, but I had to try, because you never know.” She does not recall the name of the person or company that was calling her or where she was sending her money.
When asked about her male visitor, the patient says that “about 6 months ago, I’m not sure exactly” she met a “younger man” outside an upscale grocery store in her neighborhood and that he offered to help her with her groceries. She was grateful and even thought he was attractive. She began to think of him as a friend, then as a “special friend” (although she denied that they had been sexually active). She then allowed him to stay with her in her condominium, saying, “He was such a gentleman” that she wanted to help him out. Eventually she began to give him money when he asked her for it. She did not feel she was being exploited, when the psychiatrist tried to gently probe about this. “Oh, he’s just trying to get back on his feet,” she said. Giggling, she refused to provide the name of her visitor to the psychiatrist. She stated that her mood was “fabulous” and that she did not have any concerns about her memory or her daily functioning. She has one daughter who lives out-of-state and with whom she is in infrequent contact; the patient has not told her daughter about her visitor because she thought the daughter “would not approve of their relationship.”
The PCP astutely became concerned about the patient’s ability to manage her own affairs and wondered whether the patient might be suffering from dementia. Despite the patient’s lack of subjective complaints, the clinical evaluation revealed deficits in executive functioning, attention, and memory, at a level consistent with mild cognitive impairment. Because of a lack of available collateral information, it was difficult to assess the patient’s usual daily functioning. As shown in Table 1, a number of clinically relevant assessment instruments are available to help clinicians identify deficits in various domains of decision-making, including everyday decision-making, medical decision-making, and financial capacity—the primary issue of concern in this case. Ms. B’s cognitive deficits, likely exacerbated by the patient’s elevated mood, impulsivity, and impaired judgment during her lengthy manic episode, appeared to be contributing to impaired financial capacity.
Financial capacity has been defined as “a medical–legal construct that represents the ability to independently manage one’s financial affairs in a manner consistent with one’s personal self-interest and values” (22). A decline in financial capacity may be one of the earliest signs of cognitive impairment (22). A recent study found that patients with MCI who converted to AD during a 1-year longitudinal study showed significant decline in financial skills in this year (23). Marson and colleagues have described five warning signs of financial impairment that, when clearly representing a decline from a previous level of functioning, should prompt further evaluation (22). These include problems with memory (e.g., failure to pay bills); problems with organization (e.g., misplacing financial documents, resulting in failures such as missing deadlines); confusion (problems understanding basic financial terms/concepts); problems with math skills (declines in everyday skills such as making change, calculating tips); and judgment problems (e.g., impaired judgment resulting in interest in “get-rich-quick” offers). In Ms. B’s case, she exhibited at least impaired financial judgment, and perhaps other types of financial impairment if examined thoroughly.
The Financial Capacity Instrument (FCI) is a structured interview tool designed to help assess financial capacity (see Table 1). It appears to be sensitive to changes over time that occur in people with MCI and dementia (23, 24). There are no studies specifically examining financial capacity in older adults with disorders that may impair judgment, such as bipolar disorder. The FCI specifically examines financial judgment, and therefore may be useful in cases like Ms. B’s, but in complicated cases where there are specific concerns about exploitation, instruments should also be supplemented with more in-depth questions related to financial judgment about the specific circumstances.
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Financial exploitation and undue influence
In Ms. B’s case, another ethical dimension involves what constitutes her “personal self-interest and values,” given that she claimed she wanted to give money to her “visitor.” To what extent this behavior represents her self-interest could be reasonably questioned—particularly if she is depleting her life savings or otherwise putting herself at risk. Gathering information from her daughter about the patient’s past history of financial management and transactions would be helpful in this case. Another area of inquiry would be whether the patient has testamentary capacity (Table 1), given that the patient may have changed her will to benefit her visitor. If she made changes to her will, questions might be reasonably raised about undue influence (20).
As the population ages, concerns are growing about financial exploitation of older adults (25). The National Association of Adult Protective Services Administrators conducted a survey in 2000 and reported that 13% of allegations of mistreatment involved financial exploitation (26). Estimates of the incidence of financial exploitation are undoubtedly too low, because many cases are never reported to authorities such as Adult Protective Services.
Recently published research examined all adult protective services cases from 2005 to 2007 for adults 60 and older in Virginia (27). The case-related data were supplemented, for 54 cases, with in-depth interviews. The researchers in particular sought to understand differences between cases that involved “pure” financial exploitation and those that involved both financial exploitation and neglect or physical abuse (referred to as “hybrid financial exploitation”). Of the 54 cases that were examined in detail, 38 involved pure financial exploitation and 16 involved hybrid financial exploitation. The researchers also found that older adults who were victims of pure financial exploitation were more likely to be financially and physically independent—i.e., intact in terms of cognition, physically healthy, and having adequate finances to take care of themselves. Those who experienced hybrid financial exploitation were more likely to be physically dependent (requiring some degree of dependence on others and having significant health problems) but financially independent. Moreover, those who were victims of hybrid financial exploitations were more likely to have experienced this exploitation from a relative, and for a longer time period, than those who were victims of pure financial exploitation.
These findings underscore the need to remain vigilant about the possibility for financial exploitation, even among older adults who appear physically and cognitively intact and financially independent. Asking older adults about their daily financial lives, their relationships, and any changes in these—importantly, without relatives or others present in the room—may reveal subtle deficits or warning signs of exploitation. Asking, for example, what they might say if someone called and asked them for a donation or invited them to enter a contest involving providing their financial information may reveal a gullibility that can easily lead to exploitation. Internet-based financial scams are also a serious concern, and clinicians should ask nonjudgmentally about their e-mail and Internet habits as well. Clearly, further work is needed to develop effective methods for clinicians to screen and identify patients at risk of, or already experiencing, financial exploitation, that otherwise may fly under the radar of clinical detection.
Although successful prosecution of financial exploitation cases is infrequent and difficult, clinicians should refer cases of suspected financial exploitation to appropriate authorities (adult protective services and/or legal agencies). Recent evidence suggests that multidisciplinary teams can help increase the rates of prosecution of such cases (25).
Evidence of financial impairment may trigger a number of interventions, which ideally should involve the patient, relevant family members, and other clinicians and resources. In Ms. B’s case, the psychiatrist was able to help the patient accept medication for her bipolar disorder, worked with a psychiatric social worker to facilitate the patient’s referral to an assisted living facility, worked collaboratively with the patient’s daughter to address the patient’s financial and legal situation, and referred the patient’s case to the appropriate adult protective services agency. Unfortunately, the perpetrator was never identified, and the patient was found to have lost the majority of her savings over the course of the preceding year.
Mr. R is an 82-year-old man with a history of recurrent episodes of major depression with psychotic features. He presented for outpatient psychiatric treatment 6 months ago, with a complaint of depression related to multiple losses (e.g., he was now the last surviving member of a close-knit group of friends). He was also very distressed about recurrent tinnitus. Appropriate medical and neurological workup found no medical explanation. His 78-year-old wife of over 50 years accompanied him to his appointment. The couple lives alone and has no children. The patient had multiple medical comorbidities including hypertension and atrial fibrillation. He was also deconditioned due to a lack of activity, which both he and his wife attributed to his depression.
The psychiatrist was able to establish good rapport with the patient, who expressed passive suicidal ideation, saying, “I’ve had a good life, but I am just sitting here with no reason to go on.” He did not have a specific plan for ending his life but said he was tired of suffering. He was willing to take antidepressant medications, which improved his symptoms modestly. Most of the time, however, he felt depressed and hopeless.
Five months into psychiatric treatment, Mr. R was hospitalized for an apparent seizure (his third hospitalization in a year, and one of many emergency room visits). Seizure activity was observed in the emergency department, but its etiology after workup remained ambiguous. Anticonvulsant therapy was started. During that hospitalization, his dysphoria and suicidal ideation intensified. The inpatient team obtained a palliative care consultation; this consultation led to an offer of home hospice care. Mr. R and his wife agreed to enroll, and he was discharged under the care of a home hospice agency. The psychiatrist was not consulted by the involved clinicians or informed of the decision for hospice care.
The psychiatrist grew concerned about Mr. R’s well-being. It was unclear to him what terminal diagnosis qualified the patient. The psychiatrist later learned that the terminal condition was “cerebrovascular disease.” He was worried that Mr. R’s depression and deconditioning were worsening and wondered whether the patient’s depression may have distorted the hospice’s and referring physician’s understanding of his condition.
After ongoing home management difficulties, including Mr. R’s physical decline, loss of ability to feed himself, and nights of agitation, Mrs. R called the agency for help. A hospice nurse practitioner visited the home and instructed her to stop all medications immediately, including antihypertensives, digoxin, and psychotropic medications. Mrs. R considered discontinuing hospice but was persuaded by a hospice social worker to keep Mr. R enrolled because his death was imminent and the hospital was unlikely to admit him. Meanwhile, although it was clear that Mr. R was debilitated, his clinical state did not suggest that he was nearing death.
As could be expected from the discontinuation of his medications, Mr. R developed a rapid tachycardia and a worsening of delirium. Mrs. R, overwhelmed by caregiver stress, loss of sleep, and confusion about her husband’s condition, began to think about alternatives. She spoke with the psychiatrist and elected to end hospice services. The psychiatrist met Mr. R at the emergency department, where he met criteria for a hospital admission. At the time of this writing, Mr. R has been medically stabilized and transferred to a skilled nursing facility with rehabilitation services. His dysphoria waxes and wanes, but he is no longer suicidal. His tinnitus resolved with his seizure. He now has a stable and consistently improving trend in his cognition. His wife reported that on her most recent visit he was lucid and manifested a lighthearted and joyful spirit. The psychiatrist observed that he showed more interest in life; when asked if he wanted to die, he responded, “Hell no, there’s nothing wrong with me.”
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A “terminal” case of autonomy?
Who decides when the treatment of a patient’s medical, neurological, and/or psychiatric conditions has crossed some line—from clinically appropriate and reasonable to overly burdensome and causing more distress and harm than benefit? This question lies at the heart of many ethical dilemmas faced by patients, families, and providers when considering whether to forgo life-prolonging treatment for hospice care. As use of hospice services increases, greater consideration needs to be given to whether depression and other psychiatric disorders are being adequately screened for and addressed in patients who opt for hospice (28). Depression appears to be underrecognized in hospice care recipients (29). Even the decision to opt for hospice may need to be closely examined in light of psychiatric symptoms. As in Mr. R’s case, depression may color such decisions with dark and desolate hues: patients do not see any reason to go on, and caregivers and health care providers can be unwittingly sucked into the vortex of the patient’s despair (30).
Psychiatrists have an ethical obligation to use their knowledge, skills, and clinical wisdom to advocate for patients who may not always be advocating for themselves. Although patients do have the right to refuse life-prolonging treatments, respect for persons entails not only respecting the wishes of patients who have adequate medical decision-making capacity but also protecting those with diminished capacity and autonomy. Therefore, the question of what constitutes adequate capacity to forgo life-prolonging treatments becomes crucial. While hospitalized, Mr. R had expressed a wish to die; however, it was unclear whether his decision was a fully capable one (i.e., whether he appreciated the consequences of accepting hospice). One study found that previously undocumented cognitive impairment was prevalent in hospice patients and that greater cognitive impairment was associated with more impaired medical decision-making capacity (31). Mr. R, for instance, may have been delirious, with resulting fluctuations in his level of decision-making capacity. In addition, Mr. R’s depression, which worsened during his hospitalization, may have affected his ability to envision the possibility of alternative outcomes of his present circumstances (such as the possibility of a better quality of life than what he was experiencing at the moment).
In weighty decisions in particular—those with high likelihood of permanent harm or death—there should be a very high threshold for capacity (7, 32). The people who know the patient well (in this case, the psychiatrist did) need to help make these decisions when the patient cannot. However, even when a surrogate decision-maker is available, the surrogate may also be vulnerable to impairments in decision-making. One of the psychiatrist’s main concerns in this case was that Mrs. R, when presented with the benefits of hospice, may have acceded out of exhaustion and a desire for any kind of assistance, without fully appreciating the implications of this decision.
In this case, prior to the patient’s discharge to home hospice, the psychiatrist might have raised the issue of the patient’s capacity to make the medical decision to forego treatment. He also might have expressed his concern about the level of the patient’s depression, as well as about other factors (e.g., caregiver burden) that might have influenced the patient’s and wife’s decision-making process at this juncture but that could have been addressed through other means, short of hospice enrollment (such as enlisting home health aides). Whether this would have changed the outcome is uncertain. However, the ethical obligation to protect patients with diminished autonomy remains. Finally, given that the psychiatrist had established rapport with the patient over time and had observed the variability and nuances of his depressive symptoms over time, the psychiatrist was in a strong position to evaluate and address the role of the patient’s depression in his decision-making. In this case, the patient and his wife might have benefited from better communication and collaboration between the psychiatrist and the hospice providers.
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Psychiatric collaboration in end-of-life care
In working with patients with psychiatric disorders and comorbid life-limiting disorders, psychiatrists have important and unique perspectives, and well-honed clinical acumen, that can help patients and families navigate this emotionally rocky landscape (28, 33). However, relatively few palliative medicine and hospice programs include psychiatrists on staff or work closely with consulting psychiatrists, which may be changing gradually with increased recognition of the value of each specialty to the other (28).
The most crucial role of the psychiatrist is fundamentally a humanistic one—to ensure that the patient is recognized as a person, defined more by the richness of his or her personal history than by the fact of his or her mortality (28). The psychiatrist can also help determine—in collaboration with other treating physicians—whether the patient is in an early phase of the dying process or a phase of inexorable decline suggesting that death is imminent. However, it should not be assumed that hospice care is always preferred by patients facing a life-limiting or terminal illness. This is a highly individual decision and should respect the patient’s wishes and values, prior statements, desire for privacy, and psychiatric status. Early referral to hospice may exacerbate a psychiatric condition by adding an element of abandonment and fueling hopelessness (34). Further study is needed on the effects of referral to hospice on patients with different life-limiting diagnoses and on those with pre-existing or concurrent psychiatric conditions.
Psychiatrists are exceptionally well qualified to evaluate whether enrollment in hospice may partially stem from depression, hopelessness, or fear—or even represent a form of suicidality related to an underlying, undiagnosed, and/or undertreated psychiatric disorder. These issues have been minimally studied in the context of palliative care, so data are scant regarding the impact of psychiatric illness on palliative and hospice care referrals and decision-making (29, 33). Consultation with Mr. R’s psychiatrist during the enrollment decision-making process could have enhanced the providers’ ability to balance the ethical principles of autonomy and beneficence by examining whether the patient’s and wife’s decision-making process was appropriately informed, decisionally capable, and reflected a rational and nonsuicidal thought process.
When a patient has been admitted to hospice, the psychiatrist can play a crucial role in enhancing the patient’s quality of care by providing staff with a coherent narrative about the patient’s life and history to increase recognition of the patient as a unique individual and to help broaden the empathic experience of hospice workers to the patient’s life and dying process. In addition, psychiatrists are uniquely qualified to monitor the patient’s mental status, identifying the many manifestations of impaired mental status, such as delirium, psychosis, depression, dementia, and mixed states. The psychiatrist is also in a position to help protect the patient from iatrogenic events—e.g., when akathisia is unrecognized (or misdiagnosed as agitation) and “treated” by increasing the dose of the offending medication. Thus, the psychiatrist’s role as psychiatrist—with unique knowledge, skills, and experience—can substantially assist hospice staff in reducing morbidity and improving the patient’s quality of remaining life (28).
The psychiatrist can also help the patient and family recognize that any remaining time is significant and valuable. Patients in the early phase of dying should be encouraged to maintain meaningful involvement, pursue creative outlets, continue or repair relationships—in short, to savor life by whatever means possible. The person may be encouraged to pursue long-standing goals, such as recording or writing a personal or family history, or reaching out to friends from other eras in their life. Dignity therapy—developed for terminally ill patients—is a well-studied and effective means of meeting these needs for many patients (35). Finally, psychiatric illness in itself is not a terminal condition; there should be no hesitation to provide full treatment for psychiatric illness throughout the course of the hospice experience. Further discussion and suggestions regarding the role of psychiatrists in palliative care are provided in Meier and Beresford’s article (28), including a valuable summary of how psychiatrists can better contribute to palliative care. Their article presents the perspective that psychiatry is vastly underutilized in palliative and hospice care, describes several models of psychiatric care integrated with palliative and hospice care, and discusses the benefits to patients and palliative care teams of closer collaboration with psychiatry (28).
In light of the above considerations, the following suggestions can be made to psychiatrists whose patients are enrolled in hospice. Establish a mutually accepted and recognized collaborative relationship with the hospice. Even if the hospice proposes that care be transferred to their “in-house” psychiatrist, the originally treating psychiatrist may be ethically guided by principles of beneficence and nonabandonment to try to maintain a relationship with the patient. In hospice care as in geriatric psychiatry more generally, the willingness to see patients in their home can have an extremely valuable and meaningful impact on both patient and family. The family members, whose bereavement is imminent, may gain as much if not more from such visits as the patient. In this way, ethical concepts related to boundaries cannot be applied in the same way to care for the dying patient as to care for other patients with psychiatric disorders. House calls, for example, can be a very useful evaluative and therapeutic tool, particularly at the end of life. Finally, all practitioners’ adherence to sound ethical practices is always paramount. The psychiatrist therefore has an ethical obligation to raise questions or intervene when he observes practices that are ethically questionable. As with all areas in medicine, clinicians should be aware of the potential for conflict of interest (including nonfinancial conflicts) in offers of hospice care, particularly when the “terminal” nature of the patient’s illness is in question.
Alongside the careful evaluation and management of psychiatric syndromes and symptoms, psychiatrists also need to be aware of the numerous ethical tensions and challenges that may emerge in the care of older adults with psychiatric disorders. While the basic ethical principles that guide psychiatric care remain relevant, the relative weight given to different claims may shift in the older population, depending on factors such as the presence and level of cognitive impairment, mood symptoms, family functioning, and external influences. It is very common that relatives and health care providers (e.g., primary care providers) will express concerns about older adults’ abilities to manage various aspects of their lives. A working knowledge and skill set related to capacity assessment of older adults is extremely pertinent for psychiatrists working with older adults and will enable psychiatrists to assist families and providers with these often very delicate situations.
Recent changes in the use of health care services at the end of life also pose the prospect of various ethical challenges that psychiatrists who treat older adults should recognize. Chief among these is the trend toward increased hospice use at the end of life—mostly appropriately and with significant benefits for patients and families. Therefore, psychiatrists caring for older adults should be aware of the potential for both underutilization of hospice and the potential for inappropriate or premature referral. Finally, psychiatrists have much to offer palliative care and hospice care but have generally not been as involved as they could be. Psychiatrists’ ethical obligations do not recede as death nears.