Alzheimer’s disease
To tell or not to tell
Michael Gordon, MD, FRCPC David Goldstein, PHD
ABSTRACT
OBJECTIVE To evaluate reasons for telling or not telling patients about a diagnosis of Alzheimer’s disease and to assess the effect of such a decision on patients, families, physicians, and the health care system.
QUALITY OF EVIDENCE MEDLINE was searched from January 1966 to December 1999 using the key words “Alzheimer’s disease” or “dementia” and “truth disclosure” or “attitude to health.” There were no randomized controlled trials (level I evidence) in the literature. Articles identified provided level II evidence (case-controlled and cross-sectional studies) or level III evidence (expert opinion). All articles identified were chosen for this study.
MAIN MESSAGE In attempting to determine whether or not to communicate a diagnosis of Alzheimer’s disease, physicians face a predicament: the desire to communicate honestly and directly with a patient is sometimes at variance with the equally compelling desire to concur with the patient’s family’s reluctance to disclose the diagnosis. Most Alzheimer’s patients should be told of their diagnosis, but the timing of the discussion and the way it occurs are crucial to a good outcome. Most patients accept the information without a catastrophic response. Physicians must gain support from patients’ families because it could take time for them to accept disclosure of what is perceived as a “hopeless” diagnosis.
CONCLUSION We must continue to support Alzheimer’s patients and promote hope.
RÉSUMÉ
OBJECTIF Évaluer les raisons de divulguer ou non aux patients un diagnostic de la maladie d’Alzheimer ainsi que les répercussions d’une telle décision sur les patients, leur famille, les médecins et le système de la santé.
QUALITÉ DES DONNÉES Une recension a été effectuée dans MEDLINE de janvier 1966 à décembre 1999 à l’aide des mots clés en anglais pour «maladie d’Alzheimer» ou «démence» et «divulgation de la vérité» et «attitude envers la santé ». Aucun essai aléatoire contrôlé (données probantes de niveau I) n’a été relevé dans les ouvrages scientifiques. Les articles identifiés présentaient des données probantes de niveau II (cas témoins et études transversales) ou de niveau III (opinions d’experts). Tous les articles ont servi à la présente étude.
MESSAGE PRINCIPAL En essayant de déterminer s’il faut ou non communiquer un diagnostic de la maladie d’Alzheimer, les médecins sont aux prises avec un dilemme: le désir de communiquer honnêtement et directement avec un patient est confronté à un désir tout aussi impérieux de convenir avec l’hésitation de la famille à divulguer le diagnostic. Il faudrait informer la majorité des patients souffrant de la maladie d’Alzheimer de leur diagnostic, mais le moment et la façon d’en discuter sont cruciaux pour une issue favorable. La plupart des patients acceptent l’information sans réaction catastrophique. Les médecins doivent se gagner l’appui de la famille parce qu’il peut falloir du temps pour accepter cette communication d’un diagnostic d’une maladie perçue comme «sans espoir».
CONCLUSION Il nous faut continuer à prodiguer notre appui aux patients souffrant de la maladie d’Alzheimer et à les inciter à garder l’espoir.
This article has been peer reviewed.
Cet article a fait l’object d’une évaluation externe.
Can Fam Physician 2001;47:1803-1809.
S
hould physicians communicate a diagnosis of Alzheimer’s disease to their patients?The answer to this question is complex and needs to be examined thoroughly. In this review, we evaluate reasons for telling or not telling and weigh the effect of the decision on patients, fami- lies, physicians, and the larger health care system.
Normally, physicians communicate honestly and directly with their patients on all matters of clinical importance. With Alzheimer’s dementia, however, such straightforward communication might not be appropriate because patients are sometimes not fully aware of their cognitive changes and limitations. Also, family members are often reluctant to tell patients.
Physicians are left with a conflict: the desire to com- municate honestly and directly with patients is some- times at variance with the equally compelling desire to concur with the wishes of their families.1
We first outline the clinical framework within which the issue of disclosure of a diagnosis of Alzheimer’s dis- ease is considered. Then we examine patient-related issues, the existing literature on family and patient attitudes toward disclosure, physicians’ attitudes, and ethical issues. We conclude with recommendations on how to communicate a diagnosis of Alzheimer’s disease to patients and families.
Clinical framework
One of the many difficulties in deciding whether or not to communicate a diagnosis of Alzheimer’s disease to a patient is that the family, rather than the patient, often recognizes problems first. Patients are often less aware or even unaware of cognitive problems. Initial problems could appear as non-cognitive symptoms, such as depres- sion or changes in behaviour.
Therefore, a patient might not be interested in hav- ing an evaluation and might actually resist the process.
In many cases, families use subterfuge to get an assess- ment. Thus, a patient might well be unaware of both cognitive and behavioural symptoms that concern the family and the actual reason for the doctor’s visit.
In some cases, presentation is precipitated by an acute event, such as hospitalization, surgery, an acute medical illness, or new-onset delirium. Symptoms that precede hospitalization-related delirium might not be recognized because they are attributed to aging and
“normal” forgetfulness. If a patient’s symptoms are to be recognized for what they are, physicians must suspect Alzheimer’s disease.
Once that suspicion exists, evaluation must be undertaken. Evaluation includes taking a careful history (including information from third parties), reviewing possible medical confounding factors, and specifically reviewing medications, particularly all psy- choactive drugs.
At this point, the first of many dilemmas arises.
Once the suspicion of Alzheimer’s disease exists, what does a physician tell the patient and family about why the diagnostic tests are being done? Is this the time to use the “A” word or is it acceptable to avoid the issue?
Can we use words such as confusion and forgetful- ness and still maintain our integrity?
Some additional questions arise. Should we tell the family that we are concerned about Alzheimer’s disease or dementia for which Alzheimer’s might be one of the causes? Should we tell the patient either or both of these things? Should we stall and not say anything related to dementia?
Patient-related issues
What happens to patients when dementia sets in?
How do patients react to symptoms of dementia? How imperceptible is the progress of the disease? Are a patient’s symptoms primarily cognitive or are they related to depression or behavioural changes?
Can we assure patients and families of our diagnos- tic accuracy? In the absence of definitive diagnostic criteria, can we use the word Alzheimer’s? Do patients and families want to know that a physician is consider- ing a diagnosis of dementia among other diagnoses, and if so, how will the physician arrive at a conclusion?
Quality of evidence
MEDLINE and CINAHL were searched from January 1966 to December 1999 using “Alzheimer’s disease,”
“dementia,” “truth disclosure,” and “attitude to health”
as MeSH headings and text phrases. Thirteen arti- cles were identified using “Alzheimer’s disease” or
“dementia” and “truth disclosure,” and three additional articles were identified using “Alzheimer’s disease” or
“dementia” and “attitude to health.” Four articles were excluded from the review because they consisted of letters that added no additional information to Dr Gordon is Vice President of Medical Services
and Head of Geriatrics and Internal Medicine at the Baycrest Centre for Geriatric Care in Toronto, Ont;
Head of the Department of Geriatrics at Mount Sinai Hospital; and Professor of Medicine and a Member of the Joint Centre for Bioethics at the University of Toronto. Dr Goldstein is Director of the Centre for Knowledge Transfer at the Baycrest Centre for Geriatric Care and a Professor in the Department of Psychology at the University of Toronto.
the authors’ published works. Conclusions from the Canadian Consensus Conference on Dementia were added on the recommendation of a colleague who reviewed an early draft of this article.
All studies found consisted of level II evidence (case-controlled or cross-sectional studies) or level III evidence (opinions of respected authorities, based on clinical experience, descriptive studies, or reports of expert committees). There were no randomized controlled trials (level I evidence) in the literature.2 Families’ attitudes toward disclosure
What role does the family have in the decision to inves- tigate a patient for dementia? Can a family member
“force” a relative to undergo investigation? The pro- cess that finally leads an afflicted person to accept assessment by a physician is often gradual. There might be a precipitating event, such as a kitchen fire or a concern about driving. If a precipitating event occurs, what responsibility does a physician have to the patient and his or her family? At what point, if any, can a physician ignore a patient’s wishes about disclo- sure to the family? In particular, should physicians ask patients’ permission to speak to family members?
Is it common to find patients in conflict with their family members? Is this a time to create a rights-based polarity between patients and their families? How do we build on family ties during these difficult times?
These are troublesome questions, and as yet the literature does not give clear directions. A few stud- ies of family preferences in regard to truth-telling, however, have been conducted, and their findings are instructive.
Maguire et al3 studied 100 consecutive family members accompanying patients with diagnosed Alzheimer’s disease to a memory clinic in Dublin, Ireland. The family members were asked three ques- tions: Should the patient be told of the diagnosis of Alzheimer’s disease? Would they themselves want to be told their diagnosis should they develop the disease? Would they make use of a predictive test for Alzheimer’s if one were available?
The findings were striking. Seventeen of the 100 family members said patients should be told; 83 said they should not. The main reason offered for not tell- ing was that the diagnosis would “upset or depress the patient.” Seventy-one family members wanted to be told their own diagnosis. The main reason offered was that “it would be their right to know.” Seventy-five family members said they would use a predictive test if one were available. The main reason offered was that the information “would help them make provisions for
their future and thereby reduce the burden on their families.”
What are the reasons for such seemingly contradic- tory responses? Maguire et al3 offer several sugges- tions, among which are generational differences in the perception of the disease, a paternalistic desire to protect family members, and a reluctance on the part of family members to cope with patients’ knowledge and possible grief.
Important light is shed on these issues by a previ- ous study of doctors’ willingness to tell their patients about a diagnosis of cancer. Novack et al4 reported that, in 1961, 90% of doctors preferred not to tell their patients of a diagnosis of cancer. The same question asked in 1977 revealed a complete reversal of opinion:
97% favoured telling patients. Reasons given in 1961 for not telling about cancer are similar to reasons given today for not telling about Alzheimer’s. Novack et al suggest that changes in attitude toward cancer diagnosis are related to advances in treatment and management of the disease. Maguire et al3 speculate that, because similar changes are now occurring in treatment and management of Alzheimer’s, a similar transformation in attitudes toward disclosure of the diagnosis could follow.
A smaller study reported by Barnes5 provides some contrasting evidence. In this study, 17 of 30 first- degree relatives wanted their afflicted family mem- bers to be told. Among reasons offered were the following: “It’s no use hiding it”; “They could try to keep their mind working”; “They could sort out their legal affairs”; and “They could explain why they couldn’t remember things.”
A recent study by Roberts6 focused on the family’s response to potential predictive genetic testing for Alzheimer’s disease. Most of the 203 children and sib- lings of patients with Alzheimer’s disease who filled out a mailed questionnaire that posed hypothetical genetic testing scenarios expressed an intention to pursue testing. They cited considerations of informing later-life decision making and planning future care.
Patients’ attitudes toward disclosure
We are aware of only one study addressing patients’
attitudes toward disclosure. Holroyd et al7 questioned 156 people living in a retirement community in the United States. These people (mean age 79.7 years) were given vignettes of two patients, one with termi- nal cancer and one with Alzheimer’s disease.
The key finding was that 79.5% of those questioned said they would prefer to know if they had Alzheimer’s disease, while 91.7% said they would prefer to know if
they had cancer. Also, 65.7% would want their spouses to be told of an Alzheimer’s diagnosis while 80.2%
would want their spouses to be told of a cancer diag- nosis. Reasons offered were similar in both cases: to do advance planning; to get a second opinion; to do financial planning (more often for Alzheimer’s); to
“settle” family matters; to travel or take a vacation;
and to consider suicide while still able (< 3.5% of responses). The authors conclude that these results
“may support disclosure of diagnosis for most patients with Alzheimer’s disease, but clinical and ethical issues remain in individual cases.”
A second study by Erde et al8 of 224 adults (less than 19% of whom were 65 years old or older) showed that more than 90% wanted to be told of a diagnosis of Alzheimer’s disease so they could make plans for care, obtain a second opinion, and settle family matters.
Physicians’ attitudes toward disclosure
There is little in the literature, but the general ten- dency is for geriatric psychiatrists and geriatricians to tell mildly and moderately afflicted patients and not to tell severely demented patients.9-13 Some critical questions remain, however. Should doctors tell family members of a suspected diagnosis? Should doctors tell all patients of a suspected or likely diagnosis?
Should doctors tell patients when a diagnosis is sus- pected by virtue of their history but diagnostic tests have not yet been done? Should doctors tell patients when the diagnosis is likely by virtue of their history and is also compatible with results of diagnostic tests?
Ethical issues
The discussion so far raises a host of difficult ethical issues.14-17 We must strive to balance patients’ auton- omy for decision making and the beneficence of doc- tors and families. If harm is likely must we inform?
Can we withhold information if the family asks us to but the patient, on the other hand, wants to know?
The weight of evidence available so far and impor- tant ethical considerations, such as respect for auton- omy and decision making, lead to the conclusion that it is best to inform patients and families of probable diagnoses of Alzheimer’s disease. The real challenge, however, is to know when and how to inform.
Clearly, silence and secrets interfere with the ethi- cal principle of autonomy, which is not overridden by another principle, such as nonmaleficence, or by clini- cal realities. By not informing patients and families, at least three critical issues are neglected. First, with- out knowledge, no plans can be made by patients and families. Second, if patients and families are uninformed,
no drug therapies can be tried. Third, in the absence of knowledge, no research protocols can be undertaken.
How to communicate
When and how should we communicate the often dev- astating news that a patient has Alzheimer’s disease?
It is essential that physicians develop alliances with their patients and their patients’ families. The truth will be told—at some point—and when it is, physi- cians will need families’ support. The following rec- ommendations for revealing the truth are based on Dr Michael Gordon’s experience over more than 20 years of dealing with hundreds of patients and fami- lies. The recommendations are based on the ethical principle of truth-telling and respect for autonomy, but they evolved through clinical experience.
The types of relationships established with families will be different for primary care physicians and for consultants. It is important that there be opportunities for separate interviews with families and patients so that primary care physicians can probe the thoughts, concerns, and fears of both patients and families.
Following the first evaluation of a patient, there can be vague talk about finding evidence of confusion or forgetfulness. The family can be told that there are
“many reasons—we’ll have to try and find out.” As investigations proceed and another visit or two takes place, the doctor can reveal that other nondementia or reversible causes for the patient’s condition were not found. At this point, the doctor can minimize use of all potentially aggravating factors, such as drugs.
During the consultation, the doctor can again probe the patient’s thoughts, concerns, and fears.
When sufficient information is available, patients can be prepared for the diagnosis. Doctors should reiterate why investigations were undertaken, what the symptoms are, and why it is important to find out the cause and reach a diagnosis. Some patients are oblivious to their symptoms or deny them and are, as a result, upset with the seeming interference of their families and doctors.
Doctors should couch initial use of the term Alzheimer’s in a more general framework: “It looks like you are suffering from a dementia—loss of brain or mind function—that can be caused by many things: small strokes, drugs, abnormal changes in brain cells as hap- pens in Alzheimer’s disease, and other conditions….”
It is important to have that conversation with a patient in the presence of a family member. Observe the patient’s reaction. Use the term Alzheimer’s a few times as you continue the discussion, and continue to observe the patient’s reaction. Ask if there are any
questions, and then talk about the fact that there are new treatments potentially available.
Be sure to use the opportunity to talk about future plans, advance directives, and powers of attorney and wills. Use the opportunity to let patients know that you are hopeful of future benefits, but everyone must make plans so that the family can continue to help. It is also important to allow time to determine whether drug trials or experimental therapy should be considered, but that discussion can be postponed until a subsequent visit.
In addition, physicians should help families make plans and anticipate future developments. If a trial of therapy is being considered, physicians must provide lots of support and carefully monitor patients. It is also important to recommend that the family join the Alzheimer’s Society. Reading materials can be rec- ommended, and family members can be referred for support, if necessary. Families should be helped to consider all the options for care available to them, such as day programs and respite care. Referral to a social worker might be helpful if many issues of care have to be worked out.
Conclusion
Most Alzheimer’s patients should be told of their diag- nosis, but the timing of the discussion and the process by which it occurs are crucial to a good outcome. Most patients accept the information without a catastrophic response. Physicians must have patients’ families’ sup- port because it might take time to get them to accept dis- closure of what is perceived as a hopeless diagnosis. In the final analysis, we must continue to support patients and their families and promote hope. Our goal must be
“always for care, even if not for cure.”*
Acknowledgment
The authors acknowledge the support of the Baycrest Centre for Geriatric Care in the preparation of this article. We thank Dr Amy Freedman for her helpful comments on an earlier draft of this manuscript.
Competing interests None declared
Correspondence to: Dr M. Gordon, Vice President, Medical Services, Baycrest Centre for Geriatric Care, 3560 Bathurst St, Toronto, ON M6A 2E1; telephone (416) 785-2500, extension 2438; fax (416) 785-2491; e-mail mgordon@baycrest.org
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Editor’s key points
• The decision to inform patients and their families of a diagnosis of Alzheimer’s disease can be com- plicated by patients’ cognitive limitations and their families’ wishes to “protect” them.
• The literature appears to support honest communi- cation with patients and families about the diagnosis.
• Timing and method of revealing the diagnosis should take into account medical evidence gath- ered, the existing relationship with a patient, and whether there is a well developed alliance with family members.
Points de repère du rédacteur
• La décision d’informer les patients et leur famille d’un diagnostic de la maladie d’Alzheimer peut être compliquée par les limites cognitives des patients et le désir de leur famille de les «protéger ».
• Les ouvrages scientifiques semblent préconiser une communication franche autant avec les patients qu’avec leur famille concernant le diagnostic.
• Les auteurs recommandent de prendre en consi- dération, dans le moment et la façon de révéler le diagnostic les données médicales probantes recueillies, la relation qui existe avec le patient et l’existence d’une alliance établie avec leur famille.
*“ To Comfort Always,” from a 15th-century French proverb, was the title of a booklet on geriatric care published by the College in 1980.
