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Correspondence: Address correspondence to Brian Carpenter, PhD, Department of Psychology, Campus Box 1125, Washington University in St. Louis, St. Louis, MO 63130. E-mail: bcarpenter{at}wustl.edu
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Key Words: Dementia • Diagnostic disclosure • Ethics • Patient education
Here we have assembled a review with four goals. First, we summarize the literature on aspirations for practice, the "shoulds," if you will, regarding diagnostic disclosure, such as germane ethical principles, practice guidelines, and previous editorial opinion on the issue. Second, we survey research on actual practice to determine how close current behavior comes to those aspirations. Third, we review studies of process issues in disclosure, including who is told, how and what they are told, and the impact of disclosure. Fourth, we address different levels at which attention to individual differences might be relevant. Throughout the review we point out gaps in current knowledge, and we suggest questions that future research might address in order to guide policy and practice.
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To define the boundaries of the review further, what we have not addressed here is literature related to diagnostic disclosure in other health conditions (e.g., cancer or HIV), although some of the same issues likely apply. Nor have we made a distinction between different types of dementia (a practice that reflects most papers in the review), even though that may be useful in future research. Lastly, we recommend that readers note the dates of citations presented throughout the article, as this review encompasses articles about dementia published from 1972 to 2002. As knowledge about dementia has expanded over the years, that knowledge is bound to have shifted opinion and practice, and it is important to keep in mind the historical context when interpreting research results.
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In an effort to establish the relative importance of reasons for and against disclosure, one study with spouse caregivers asked them to rank potential benefits of obtaining a dementia diagnosis (Connell & Gallant, 1996). Most important was that obtaining a diagnosis "would let me know what is wrong with my spouse." Other key reasons endorsed by more than 70% of respondents included enabling the family to get information about dementia and plan for the future, qualifying the spouse for drug treatments, and allowing family members to assess their own risk for dementia. In contrast, reasons why receiving a diagnosis was more trouble than it was worth included the lack of effective treatments or a cure, an obligation to see a specialist, and the potential stigma for patients. Virtually nothing is known about how patients themselves or health care professionals would rank these kinds of reasons. Another area open for research is whether (or how) ethical principles inform opinions about disclosure among patients, family caregivers, and health care professionals.
Potential research questions are as follows:
Practice Guidelines and Individual Opinion
A number of professional organizations have constructed guidelines that suggest how to handle diagnostic disclosure in dementia. Most of these guidelines, which we summarize in the paragraphs that follow, promote disclosure, albeit with acknowledgment that there may be exceptions. What those exceptions might be and how they should be addressed, however, tend to be left undetailed.
One of the most forceful statements in favor of disclosure comes from the Alzheimer's Association (2002), which cites moral and legal rights to diagnostic information. In cases in which patients may have difficulty understanding the diagnosis, the association suggests providing the diagnosis to families alone first, and then including patients in subsequent conversations. Follow-up sessions are recommended for all families. The guidelines do acknowledge that there may be "unusual circumstances" in which disclosure may not be advisable, but those circumstances are not explained. Similar guidelines are offered by the Alzheimer Society of Canada (2001), including a statement that disclosure should occur "in a joint meeting with the affected person and family members as appropriate." Here again, what "appropriate" means is not clarified. Similar qualification appears in a publication on dementia management distributed by the American Medical Association, which states that the diagnosis should be given to patients "if at all possible" (Guttman & Seleski, 1999).
Like the previous standards, those in the Fairhill Guidelines on Ethics of the Care of People with Alzheimer's Disease (AD; Post & Whitehouse, 1995) state firmly that patients have a moral and legal right to know their diagnosis. The ideal situation, they suggest, is to disclose to patient and family together in a joint meeting, in which facts about the disease are followed by a discussion of available resources and a comprehensive care plan. However, the guidelines also state that "[i]f diagnosis is made after dementia has advanced, disclosure to the individual no longer is meaningful or warranted" (p. 1423).
Guidelines from the American Psychological Association regarding the evaluation of cognitive impairment underscore the value of feedback for planning and preparation (American Psychological Association, 1998), yet they allow clinicians latitude, stating that they "should exercise clinical judgment and take into consideration the needs and capabilities of the particular client when feedback is provided" (p. 1302). Similar advice is given by the American Psychiatric Association (1997), which suggests that discussions about diagnosis "must be adapted to the specific concerns and abilities of the patient." Finally, although guidelines for internists do not address disclosure explicitly, their emphasis on planning and participation in treatment trials implies that disclosure should be made to patients and families (Richards & Hendrie, 1999). In summary, contemporary practice guidelines tend to promote diagnostic disclosure. However, although they acknowledge that clinical judgment should be used regarding the process, they provide little detailed information about specific exceptions and alternatives.
In addition to organizational recommendations, a number of individuals have offered their opinion in brief editorials. Those in favor of disclosure include Woods (1995), who asserts that diagnostic disclosure can be useful because it gives everyone in the family an explanation for behavioral changes that are, or will be, present. A similar view is offered by Scott (2001), who suggests that patients have a right to know about their diagnosis and that knowledge can explain symptoms. Those opposed to disclosure include Markle (1993), a physician who describes his own experience of telling his wife only that she was forgetful, sparing her a more comprehensive explanation of her problem and a "dismal future." Taking a balanced view, Post and Foley (1993) suggest that truth telling and patient self-determination trump other factors, although depression or severe cognitive impairment might alter the usual disclosure process.
As many authors note (e.g., Kirby & Maguire, 1998), diagnostic disclosure in dementia seems to be shadowing a parallel issue in cancer. Decades ago, health care professionals routinely withheld a cancer diagnosis from patients, whereas now there is a near universal consensus that a cancer diagnosis should be disclosed (Novack et al., 1979; Oken, 1961). Advances in diagnostic accuracy, prognosis prediction, and treatment effectiveness seem to be responsible for this shift in attitude, and many authors predict disclosure in dementia will (and should) follow a similar evolution.
Potential research questions are as follows:
Actual Practice May Differ From Intended or Desired Practice
In this section we summarize two areas of research. The first focuses on self-reports by health care professionals of their disclosure practices. The second focuses on accounts by family members and patients regarding their actual or desired experience of disclosure.
Despite practice guidelines in favor of disclosure, some health care professionals still appear willing to withhold a diagnosis of dementia. In a survey of 246 consultant psychiatrists, only 44% said it was their normal practice to inform patients of their diagnosis of AD (Clafferty, Brown, & McCabe, 1998). Gilliard and Gwilliam (1996) surveyed 16 memory clinics about their disclosure policies. Fifty-six percent of clinics reported that they tell patients their specific diagnosis, and 25% said they would not discuss the diagnosis with patients unless if asked directly. Among 40 geriatricians and geriatric psychiatrists, 75% said they always or usually disclose, whereas 20% said they saw no benefit in telling patients (Johnson, Bouman, & Pinner, 2000).
One factor that seems to influence whether a diagnosis is provided is the severity of dementia, echoing one of the exceptions cited in practice guidelines. Rice and Warner (1994) asked 244 geriatric psychiatrists about their disclosure practices with patients who have different degrees of dementia (mild, moderate, or severe). Clinicians were more likely to tell patients with mild dementia and less likely to tell patients with severe dementia, as a result of presumed limitations in understanding. In a later study by these authors (Rice, Warner, & Bayer, 1997), 138 geriatricians also differed in their practices, depending on the severity of dementia. Only 20% told patients with severe dementia, whereas increasing proportions told patients with moderate or mild dementia. Severity of dementia and patient insight were also cited as influential factors by the geriatricians and geriatric psychiatrists interviewed by Johnson and colleagues (2000). Using vignettes of an older mother with symptoms of cognitive dysfunction (mild vs. moderate), Fortinsky, Leighton, and Wasson (1995) surveyed 498 primary care physicians about how they would handle disclosure. In this study, severity of dementia was unrelated to forecasted behavior, and, averaging across conditions, only 53% of the physicians said they were very or definitely likely to disclose the diagnosis to the patient. Another critical factor appears to be the extent to which professionals believe that early detection and disclosure are beneficial to patients and their families. In a survey of general practitioners, 34% saw no benefit to early diagnosis, and 66% said they in fact foresaw negative consequences from making an early diagnosis (Milne, Woolford, Mason, & Hatzidimitriadou, 2000). Finally, 39% of 281 general practitioners said they often or always disclosed a diagnosis, citing as influences diagnostic certainty, the patient's wish to be told, and the patient's emotional stability (Vassilas & Donaldson, 1998). Across all these studies, an estimated 50% of clinicians routinely withhold a dementia diagnosis. Clinicians appear to use some sort of mental algorithm to decide whether disclosure is appropriate, assembling an equation that consists of a variety of factors, although we know little about what those factors are and how they are weighted.
Surveys with family caregivers confirm what professionals report about their disclosure practices. One of the first studies (Glosser, Wexler, & Balmelli, 1985) with 47 caregivers found that one third said their physician had been reticent to make a diagnosis. The authors explain this was likely because of the unreliability of diagnostic procedures at the time and because physicians wanted to spare patients and families the knowledge of a discouraging prognosis. However, even in more recent surveys of caregivers, rates of disclosure to patients are not much higher (39%, Brodaty et al., 1990; 48%, Heal & Husband, 1998; 49%, Holroyd, Turnbull, & Wolf, 2002; 37%, Rao, 1997). Even asking about preferences for disclosure seems uncommon. Heal and Husband (1998) found that only 32% of caregivers had been consulted about whether to withhold or disclose diagnostic information.
In one of the few studies that has included individuals with dementia, Marzanski (2000) conducted interviews with 30 patients. Only 47% knew their correct diagnosis, and 66% said no one had ever talked with them about their illness, although the author acknowledged that patient reports may have been impaired by memory deficits. Erde, Nadal, and Scholl (1988) presented 224 ambulatory patients of all ages with a vignette involving a patient with symptoms consistent with dementia and asked if they would want their physician to tell them if their diagnosis was dementia. Ninety-two percent said they would want to know, primarily for the ability to plan, a chance to settle family matters, to pursue travel, and to get a second opinion. More respondents reported that they would want to know the diagnosis if it was made when they were 40–60 years old (97%) than if it was made when they were 70–90 (88%), perhaps implying that more could be done with information that was obtained earlier in life. A similar study with only older adults presented them with two vignettes, one involving cancer, the other dementia (Holroyd, Snustad, & Chalifoux, 1996). Ninety-two percent said they would want to know their cancer diagnosis, whereas 80% said they would want to know their dementia diagnosis. Reasons to know included the ability to plan for the future, get a second opinion, and settle family matters. Four individuals (3%) said knowing would enable them to consider suicide while still able. Reasons not to know included the possibility of becoming upset, the potential for hopelessness, and the futility of knowing given the lack of effective treatments.
Potential research questions are as follows:
Who Is (or Should Be) Told About the Diagnosis?
From an individual rights perspective, a dementia diagnosis is the "property" of the individual to whom it applies, and that individual has the right to distribute or withhold that information, even among close family members. The American Medical Association (Guttman & Seleski, 1999) suggests that as long as patients have decision-making capacity, their wishes to have the diagnosis withheld from family should be honored. However, family members have obvious interests in knowing a dementia diagnosis. Indeed, family members may be the first to notice changes in cognition or behavior, and they may play a significant role in prompting a formal evaluation. Moreover, as dementia progresses, the family will be called on to play a major role in patient care. From a more collectivist approach, then, family members may have their own (sometimes competing) rights to know what is happening and what might be in store in the future. In fact, the empirical evidence suggests that clinicians offer diagnostic information more readily to family members than to individuals with dementia.
Holroyd and colleagues (2002) found that although 49% of patients had been told their diagnosis, 93% of caregivers had been told. Similar discrepancies were reported by Brodaty and colleagues (1990; 61% of patients were told vs. 100% of caregivers) and Rice and colleagues (1997; 20% of geriatricians told patients, whereas 80% told caregivers). Rice and Warner (1994) also reported that disclosure to patients depended on their cognitive status but that disclosure to caregivers was nearly universal. Given research cited previously, the reason for this discrepancy may be that clinicians believe patients are not able to understand the meaning of the diagnosis whereas caregivers most need to know. In studies using vignettes, similar discrepancies emerge. Responding to a vignette in which an older mother and her daughter are present for an evaluation of the mother's cognitive functioning, 53% of primary care physicians said they were very or definitely likely to tell the mother about a diagnosis of dementia, whereas 90% said they would tell the daughter (Fortinsky et al., 1995).
One notable divergence is that although individuals say they would want to know their own diagnosis, they often would want family members with dementia to be shielded from a diagnosis. For example, in a study with older adults, 80% said they would want to know their dementia diagnosis, but if their spouse were to develop dementia only 66% would want them to know (Holroyd et al., 1996). Parallel results emerged from a survey of caregiving family members: 71% said they would want to know themselves if they had dementia, but 17% said patients should receive their own diagnosis (Maguire et al., 1996). As these authors suggest, the contrast in disclosure preferences for self versus other could be explained by generational differences in perceptions of the disease, paternalism among caregivers, or a reluctance among family members to deal with relatives' potentially negative reactions, not to mention the implications of a dementia diagnosis for their own lives. It is also worth noting that attitudes reported as recently as a few years ago may be quite different from contemporary opinions, given the influence of widespread education about dementia and the arrival of new treatment options.
When a family member receives a dementia diagnosis, it can portend dramatic changes that will be necessary in family functioning, and some individuals may wish to ignore that reality for as long as possible. As seen in qualitative interviews with 34 caregivers, many were unable or unwilling to acknowledge deterioration in a family member (Pollitt, O'Connor, & Anderson, 1989). One caregiver described his wife's memory as "completely gone," yet because he relied on her for assistance, he said he was unlikely to seek help for her. Some families may have incentives, psychological or practical, to preserve the idea of normality at the expense of knowing the truth.
Potential research questions are as follows:
The Process of Disclosure
Once a diagnosis has been made and questions about whether to inform and who to inform have been decided, the next step is the actual communication of information. Two relevant process issues here are how information is provided and what information is provided.
One practical matter is the sequence in which information is shared with patients and family members, assuming both will be told. In the work by Brodaty and colleagues (1990), 14% of patients were given their diagnosis first and alone, 21% received their diagnosis with family present, and 65% received their diagnosis after it had been given to their caregiver. Professional opinion differs about the optimal sequence, with some authors suggesting separate meetings (Gordon & Goldstein, 2001) and others recommending a joint meeting (Post & Foley, 1993). There is no evidence about whether one sequence of disclosure is more helpful than another, or even whether diagnostic information is more useful when it comes directly from health care professionals versus family members.
Another issue that has received little attention concerns what information is provided to patients and families. Some studies have shown that, when patients and families receive a diagnosis, they still receive little information about prognosis, available treatments, or management (e.g., Brodaty et al., 1990; Holroyd et al., 2002), even though thorough information on these topics is important (Rabins, 1984). In one survey with 289 caregivers, only 28% said they felt they had received an adequate explanation of the diagnosis. Many reported that the diagnosis had been delivered in a curt, insensitive way, and in only three cases was a family conference organized (Chenoweth & Spencer, 1986), although practices may have changed since the time of that research.
At a more detailed level, there may be wide variability in the language that is used to convey a diagnosis. Rice and Warner (1994) found that clinicians tended to avoid the term "dementia" and instead relied on phrases such as "failure of brain cells" and "brain shrinkage." Some staff at the memory clinics surveyed by Gilliard and Gwilliam (1996) said they were honest with patients, yet they acknowledged that they avoided the term "Alzheimer's." Similarly, among the geriatricians and geriatric psychiatrists surveyed by Johnson and colleagues (2000), only 25% said they used explicit terms such as "AD" or "dementia." Gordon and Goldstein (2001) suggest it is acceptable to avoid the term "Alzheimer's disease" with patients at first, using instead more vague references to "loss of brain or mind function" (p. 1806). Suggestions about language are also provided by Pitt (1997), and some of those suggestions include less than direct language (e.g., "I'm afraid you really have a pretty bad memory," p. 307). In contrast, Tangalos (2000) argues plainly that, "unless forbidden by the family, the patient should be informed of the diagnosis using the words ‘Alzheimer's disease.’ Today there is usually no reason to equivocate regarding the diagnosis" (p. 30).
What patients and families are told—the exact language used by health care professionals—has not been investigated in any systematic way; nor is it clear why professionals choose one explanation over another. For instance, clinicians may adapt what they say to accommodate patient abilities or risks of an adverse reaction (Post & Foley, 1993). Clinicians may think they are using language that is unequivocal, may choose language they feel softens the blow, or may choose language that enables them to avoid altogether delivering bad news. Whatever the motive, when vague information is provided, patients and families may walk away with interpretations of what was said that differ dramatically from what clinicians intended.
A related issue is whether patients and family members are able to integrate the information they receive during conversations about a diagnosis. Smith and Beattie (2001) found that families visiting an outpatient AD clinic recalled few specific details about the disclosure session. These authors, and others (e.g., Alzheimer's Association, 2002; Chenoweth & Spencer, 1986; Meyers, 1997), suggest that receiving a diagnosis is so overwhelming that it may be pointless to provide much other information at the initial session. Follow-up appointments may be a preferable time to discuss the diagnosis, prognosis, management, and treatment options in more detail. Monitoring the disclosure conversation and interviewing patients, family, and professionals after disclosure would provide details about similarities or dissimilarities in perceptions of the process, recall of information, and whether follow-up sessions lead to more beneficial outcomes.
Potential research questions are as follows:
Impact of Disclosure
Both clinicians and caregivers have argued that one reason they consider it acceptable to withhold diagnostic information is to prevent patients from feeling hopeless, depressed, or even suicidal. Evidence of that kind of reaction came from 24 individuals with dementia, whose recollections of their reaction to the diagnosis were more prominent than specifics about what they had been told (Pratt & Wilkinson, 2001). Most reported shock, fear, anger, and depression. In a recent survey of caregivers in an AD support group, 29% of the caregivers thought giving the diagnosis to the patient had not been helpful, and 51% said their relative with dementia had "reacted poorly" (Holroyd et al., 2002). It is important to note that this type of research provides little information about whether initial reactions that might be (understandably) negative differ from longer term adjustment. For instance, Tanida and colleagues (1998) found that cancer patients experienced shock upon initial disclosure, but their overall adjustment 2 weeks later was not adverse. And even initial reactions are not universally negative. In a survey of dementia patients who received a diagnosis through the mail, 25% said they found something upsetting in the letter but another 25% said they felt optimistic after reading the letter (Jha, Tabet, & Orrell, 2001). Likewise, in Husband's (1999) report on three patients followed for psychotherapy following disclosure, one patient reacted with fear, another responded with anger, but the third felt relief at knowing what was causing her problems, a sentiment expressed by other patients (Pratt & Wilkinson, 2001). Moreover, reports about patients from caregivers may be clouded by the caregiver's own distress (Magaziner, 1997).
Patient reactions to a dementia diagnosis are probably influenced by many factors, including the sensitivity with which information is presented, the psychological vulnerability of the patient, coping style of the family, the previous personal experience with dementia of other family members or friends, and mental preparation for receiving the diagnosis. Concerning this last point, patients and family members who have recognized changes in cognition and suspect that something is wrong may already have begun the process of adapting to a diagnosis even before it is officially given (Smith & Beattie, 2001).
Although research on patient reactions is sparse, even more rare are empirical data on the impact of disclosure on caregivers. Receiving a diagnosis may concretize the progressive and inevitable decline that awaits. In a survey of 576 family members, caregivers for individuals who had received a formal diagnosis reported more relationship strain and reduced activities compared with caregivers for individuals who had no official diagnosis, independent of level of patient impairment (Bass, McClendon, Deimling, & Mukherjee, 1994). In this test of labeling theory, receiving a dementia diagnosis seemed to elevate the importance of the disease, making it a more prominent part of an individual's identity, prompting caregivers to become overly focused on providing personal care to the exclusion of their own well-being and continued social integration. It is also plausible that, when family members learn a relative has a disease that may have a genetic component, they may react with worry about their own risk (Lynch, Harlan, & Dyhrberg, 1972). In contrast, just as for patients, receiving a diagnosis may help caregivers by explaining symptoms, allowing them to attribute symptoms to the disease rather than some fault in the individual (Bass et al., 1994; Smith et al., 1998).
Psychological reactions to diagnostic disclosure are critical to understand, because those reactions (and the factors that influence them) may predict how diagnostic information is understood, the extent to which the patient and family are willing to seek additional information or services, and the ways in which health care professionals could individualize disclosure for optimal benefit.
At a more pragmatic level, it is possible that verification of a diagnosis and disclosure may have ramifications well beyond the individual and his or her family. For instance, friendship networks may shift when peers, for reasons rational or otherwise, distance themselves because they do not understand the disease or the behaviors they see in their friend. Even more broad are the implications for employment and insurance coverage, as individuals with dementia may be more vulnerable to discrimination because of their diagnosis. Likewise, in states that mandate reporting to the Department of Motor Vehicles, some individuals may lose driving privileges because of their newly learned diagnosis. These elements reflect society's reaction to dementia, which also can influence adaptation to a dementia diagnosis.
Potential research questions are as follows:
Individual Differences
Up to this point we have made general statements about disclosure issues, as if there are universal preferences or reactions, but in all of these areas there is probably wide variability. At one broad level, for instance, cohort factors may influence how much older adults want to participate in medical care decisions or even how much medical information they want to receive (Ende, Kazis, Ash, & Moskowitz, 1989). Liddle, Gilleard, and Neil (1993) found that only 34% of recently discharged geriatric patients wanted to be involved in resuscitation decisions, and a similar reticence might be apparent when older adults confront dementia (see Bahro, Silber, & Sunderland, 1995). Some patients may want to be active participants in their dementia-related care, whereas others may prefer a more passive or uninformed approach. In contrast, recent cohorts may more universally desire an active approach regarding their health care. It is also worth pointing out again that the landscape of dementia care has changed dramatically in the past few years, and results from studies that were published as recently as the 1990s might not be replicated now, as diagnostic accuracy has improved, more treatment options have become available, and public awareness has increased.
Norms regarding dementia disclosure practices may vary not only from person to person but also from family to family (Connell & Gallant, 1996) and perhaps across professional disciplines or settings of care. For example, primary care physicians might, in general, follow practices that differ from those of neurologists, neuropsychologists, or geriatric psychiatrists, who may have the benefit of access to specialized training or ancillary services they can offer to patients and families. Norms could also differ from culture to culture (Charlton, 1998). In this review, for instance, a large proportion of writing on this topic has come from Commonwealth nations (see Figure 1). This trend seems to reflect the rich tradition in those countries of ethical discourse related to dementia. It is worth keeping in mind that standards for practice and expectations of citizens may vary from place to place (not to mention within places). Documenting whether there are differences at these levels—individual, family, cultural, national—may offer insights regarding the degree to which disclosure practices may have to be tailored. In the end, an approach that incorporates individualized preferences may be most beneficial (Ahujn & Williams, 2000).
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Conclusions
Although a consensus regarding dementia diagnosis disclosure appears to be emerging among professional organizations, contemporary practice seems to lag behind. One way to begin to reduce this discrepancy is to expand scientific knowledge about the process and outcome of disclosure. More research is needed, and from that research should come a broad dissemination of results so that patients, caregivers, health care professionals, and the general public can have at least a uniform understanding of the issues, even if preferences about practice may be highly individual.
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Jennifer Dave is now at the Department of Psychology, University of Southern California.
1 Department of Psychology, Washington University in St. Louis, MO.
Decision Editor: Linda S. Noelker, PhD
Received for publication March 6, 2003. Accepted for publication April 22, 2003.
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