Bioethics Blogs

Overcoming The Challenges In Advance Care Planning For Dementia Patients

Many newly diagnosed dementia patients
may have capacity and be fully able to state their preferences about future
medical care when they lose capacity. Their decisions about risks and benefits
of medical treatments while they have capacity flow from their critical interests which are the kinds of interests, which if not
satisfied, would make them think they were worse off in some way or that their
life had not be worthwhile. When a patient is capable of articulating his or
her critical interests we know what is most important about them in terms of
making their lives meaningful. So it would seem that preferences that stem from
critical interests about future medical care provides the most definitive
evidence possible, i.e. substituted judgment, for both medical and family caregivers to have as a basis on
which to be reasonably sure they are making decisions that the incapacitated
patient herself would make if she were in this same situation.

However, many incapacitated dementia
patients who by definition are no longer able to express their critical
interests are indeed still able to express preferences based in their experiential interestsExperiential interests are abiding
biologically based, immediate interests grounded in the quality of one’s life
from activities in which they are finding satisfaction, pleasure, and amusementThe
situation becomes particularly challenging when it appears that the
incapacitated dementia patient is expressing a preference based on experiential
interests that runs contrary to a prior expressed preference stemming from
critical interests.

Because patients with severe dementia
experience their lives in discrete moments, each expressing its own set of
experiential interests, there is also a concern about how to understand the
changing self of the patient and interpret her wishes and preferences
throughout the transitions, particularly at the end of life.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.