Breaking bad news is never a pleasant task. Physicians, social workers, and others involved in counseling persons with dementia and their families are faced with breaking bad news as part of our everyday working experience. Instruction in the techniques of breaking bad news is often inadequate in medical training . Along the course of a dementing illness, there are many elements of bad news that must be conveyed. First, of course, the initial diagnosis must be broken to the patient and his or her family. As the disease progresses, a series of additional features of the progressive functional deterioration must be discussed, such as loss of driving ability, loss of ability to live safely in the community, etc.
It makes common sense that there are both relatively good and relatively bad ways of breaking bad news. There is a small but potentially useful medical literature addressing breaking bad news. Although no study was directly targeted at breaking the bad news about dementing illnesses, enough has been learned about other illnesses to allow some
extrapolation to the dementias. Fortunately, there are both recent reviews of the published data and consensus guidelines published .
There are several goals of breaking bad news. Important information must be conveyed in a manner that allows the information to "sink in" and be retained. One strategy of evaluating a method of breaking bad news is to measure how much of this important information is imparted. In the case of dementia, most often the diagnosis is made at a point in the illness where short-term memory is already impaired, and it is important that the family and other caregivers be considered as important targets of the "bad news" as well. Another goal of proper breaking of bad news is to minimize the adverse effects (e.g. distress) associated with receiving the bad news. Coping skills are also altered early in the course of dementias, and it is possible that strategies that minimize stress and improve coping when breaking bad news to cognitively intact patients may be handled very differently by dementia patients. Similarly, the fears and anxiety that family members have about dementia are very different than those associated with cancer, and so extrapolation from cancer populations to families of dementia patients may not be the appropriate way of determining the best strategies of breaking bad news.
In the absence of data demonstrating the advantages of one technique of breaking bad news over another, one goal might be to survey a community-based population-at-risk, and inquire as to their preferences about being informed of the diagnosis. Holroyd and colleagues found in one such survey  that most (˜ 80%) persons surveyed would want to be informed, but a significant minority (35%) would not want their spouse informed if the spouse had dementia. One reason given for preferring to be informed was "to consider suicide while able," which reinforces the need for emotional support and counseling in the period immediately after breaking the bad news.
It is very clear that the limited number of randomized clinical trials pertaining to breaking bad news force one to use alternate means to come up with the current best practice. Consensus guidelines developed after reviewing the available data  were developed recently. The general principles that apply to breaking bad news about dementia include
features that address the setting, the content, and the methods to convey the bad news. In terms of physical setting, a quiet and private place is preferred. Adequate time should be allocated with provision for avoiding one's being paged or otherwise having the session interrupted. The time allotted to answering questions should not be skimped. Ideally,
family and significant others should be present, although in cases of very early dementia a case can be made for presenting information separately to the patient in privacy and then again to appropriate others.
Ideally, only one person is responsible for breaking the bad news, which allows them to be sure that a full and coordinated flow of information occurs. Bad news should be given in person, not over the phone. If possible, have another health professional present as well. Avoid a long wait after you have completed an assessment, as the period of uncertainty after the patient has undergone testing is anxiety provoking for the patient and their family. Assess the patient and family's understanding of the situation, which can provide you with a framework to explain the diagnosis and prognosis in an understandable way. By asking about their understanding of the situation, you may be able to discern some of the cultural overlay and belief system of this family. Ask about their fears, which will let you address the aspects of dementia they find most frightening. Allow them to express their feelings openly, and let them know that it is quite normal to have an emotional response to bad news. Respond to the feelings expressed with empathy. Physical touch can convey sympathy and solace.
Be prepared to give information in an honest and simple fashion. Some authors recommend proceeding in steps, giving information in digestible units and allowing time at subsequent visits to give more details as the patient and family process the information. There will certainly be interest in treatment, and it would be useful to have a handout or pamphlet outlining treatment options, including any experimental therapy protocols available in your area. Similarly, a handout on available community resources would be helpful, including family support groups, legal and financial counseling, day care programs, housing options, etc. This type of advance preparation reassures the patient and the family that you are informed about dementia, and that they will not be left alone with the burdens of the illness.
The patient and family will want information about prognosis. Be as accurate as possible, but it is best not to be too definite about the time scale. The great inter-individual variation of rate of progression of dementias make such projections problematic. Also, progress has been made in the past few years in terms of treatments that seem to alter the natural time-course of the disease, and future advances may continue to alter the natural progression. In general, it is considered best to offer a degree of hope when giving bad news.
Often, a worry to the patient and family is how to inform others. Offer to assist in informing other significant family members or important others that could not attend this session. The patient may also request that certain family members not be informed about the diagnosis. As long as the patient is competent to make such decisions, their preferences should be respected.
Arrange a follow-up visit soon (preferably within the next 24 hours) after breaking the bad news to assess the reaction to the bad news and to be available to answer the inevitable additional questions. Ideally, a staff member should be available by phone to answer any questions or address problems that come up prior to the follow-up visit. Although it is important to have a discussion about preferences including wishes about preferred intensities of care at various stages of the progression of the dementia, it is inappropriate to have this discussion at the same visit that one breaks the news about the diagnosis. Lastly, it is important to adequately document what the patient has been told, which family members were present, and the reactions to the news. If instructed not to discuss the diagnosis with certain family members, this should be recorded as well.
Given the lack of specific information concerning breaking the bad news regarding a diagnosis of dementia, there is still plenty of room for using common sense and good judgement. Hopefully future studies will provide a database to allow more substantiated recommendations.
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Jay S. Luxenberg, MD, is the Director of Medical Services at the Jewish Home for the Aged, San Francisco, California, a 450-bed skilled nursing facility and 6-bed acute geropsychiatric hospital, and is Associate Clinical Professor at the School of Medicine, University of California San Francisco. He also serves as the Content Editor of the IPA web site.