A Primer on Managed Care: Multiple Chronic Conditions

Ideally, people should fill out a dementia directive before they develop signs of cognitive impairment, because once mild cognitive impair- ment is present, filling out a dementia directive can be difficult. Although people with mild cog- nitive impairment may still have the capacity to make medical decisions for themselves, filling out a dementia directive may be too complex a task for them. The complex forward-thinking this activity requires may be beyond their reach, as one has to be able to imagine oneself in a future state, then choose what that future self would want if faced with various medical scenarios. What to Do with a Dementia Directive Once a dementia directive has been filled out, the most important next step is to discuss the wishes indicated in the directive with the main people who would be most likely to guide one’s future care if dementia were to develop. Copies should be provided to each of these people so that docu- mentation of the person’s wishes is available to all for future reference. Patients with dementia may face myriad complex medical scenarios, and each person’s experience with dementia is unique. As a result, a dementia directive will never supersede shared discussions between families and physicians in the moment. As such, the conversations that people have with their loved ones before they develop dementia, using the dementia directive as a guide, may be most important of all. Once completed, people should also mail a copy of their dementia directive to their primary care provider, so that it can be scanned into their medical record. There, it should be made easily available for future reference to help guide medi- cal care if later they develop dementia. A dementia directive is not intended to replace one’s state-approved advance directive. Instead, a best practice would be for a dementia directive to be attached as an addendum to one’s state-specific living will. However, if a person has not filled out a state-approved advance directive, a dementia directive still has value as a freestand-

ing communication tool, to help guide healthcare proxies making decisions about care for people who are no longer able to guide their own care. People often ask whether they should have their dementia directive witnessed or notarized. If someone were very concerned that the docu- ment they sign might later be contested, it would certainly make sense for them to take one or both of these steps. Having a dementia directive witnessed or notarized might minimize some of the risk of legal challenge. In most cases, how- ever, even without witnesses or notary, demen- tia directives can still serve as useful guides for healthcare proxies to use to help them make choices about medical care on behalf of a person who is incapacitated due to dementia. Rolnick and colleagues (2017) make a strong case for the “delegalization” of living wills. They point out that requiring non-related witnesses, ‘A dementia directive is not intended to replace one’s state-approved advance directive.’ or certification by a notary public, creates barri- ers to completion of living wills. They argue that the ethical and legal risks, which arise when a patient becomes incapacitated without having filled out an advance directive, are higher than the risks that may come in the less likely event that a directive without witnesses might be con- tested. Removing these barriers to completion is therefore more likely to be helpful rather than harmful, a conclusion that holds for dementia directives as well. One fear people have about dementia is that they will no longer be able to guide their own medical care. Many worry that they could be forced to have more—or less—invasive medical care than they would have wanted to keep them alive longer. A structured dementia directive can The Many Advantages of Dementia Directives

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