GENERATIONS – Journal of the American Society on Aging

dementia directive has been downloaded more than 100,000 times, with additional downloads continuing at a rate of about 500 per week. The structure of the dementia directive is organized around brief descriptions of mild, moderate, and severe stages of the disease. Under each of these descriptions, the directive offers people the same four options, allowing them to indicate what they would want the goals of their medical care to be at a particular stage (see sidebar, below). The directive offers people the same four options for each stage of the disease. Guidance from the field of palliative care was especially useful in planning the wording of these options. A particularly important principle was that the options listed should be more than simply checkboxes of interventions which some- one would—or would not—want, but should also include value-based reasoning as to why some- one might choose one option over another. For example, the directive includes the option of “do not resuscitate in the event of cardiac or respiratory arrest,” and is avail-

able for each stage of dementia. The directive then explains that someone might choose that option because they might feel that if they had a cardiac arrest at that stage, there may be too high a risk that after resuscitation they might be left with significantly worsened cognitive function. For some, they might prefer to have a natural, peaceful death at that stage, rather than to risk surviving in a significantly dimin- ished state. When to Fill Out a Dementia Directive The best time to fill out a dementia directive is after one reaches age 65, the age at which the risk for developing dementia starts increasing. This age lends itself well to the opportunity to have discussions about advance care planning as part of a Medicare annual wellness visit. In 2017, Medicare introduced new billing codes for advance care planning, which may include discussions about a dementia directive. These codes can be added to the usual billing used for annual wellness visits. Medicare spe- cifically states these advance care planning ser- vices should not incur additional cost-sharing expenses for beneficiaries when such codes are added to preventive care services (Centers for Medicare & Medicaid Services, 2015).

Goals-of-Care Options for Each Stage of Dementia The following options for care are offered in the dementia care directive, and apply for each stage of the disease: √ To live for as long as I could. I would want full efforts to prolong my life, including efforts to restart my heart if it stops beating. √ To receive treatments to prolong my life, but if my heart stops beating or I can’t breathe on my own, then do not shock my heart to restart it (DNR) and do not place me on a breathing machine. Instead, if either of these happens, allow me to die peacefully. √ To only receive care in the place where I am living. I would not want to go to the hospital even if I were very ill, and I would not want to be resuscitated (DNR). If a treatment, such as antibiotics, might keep me alive longer and could be given in the place where I was living, then I would want such care. But if I continued to get worse, I would not want to go to an emergency room or a hospital. Instead, I would want to be allowed to die peacefully. √ To receive comfort-oriented care only, focused on relieving my suffering such as pain, anxiety, or breath- lessness. I would not want any care that would keep me alive longer.

80 | Spring 2019

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