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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. If, in fact, as
some authors claim, the patient loses all of her prior personal identity, and becomes
a series of fleeting moral agents, then does it follow that her prior wishes
stemming from former critical interests are no longer the basis of decision
making as she nears the end of her life? Has the whole basis for advance
directives been undermined? 

This is a serious matter since advance
directives have become the principal means by which individuals while they have
capacity can plan ahead and avoid overtreatment at the end of life when they
lose capacity, as well as reduce the burden of decision making on loved ones.
This is a particular concern of patients with early dementia who fear they will
spend future years lingering in a state of dementia being supported by medical
technology, while being a burden on their families. Thus, it is important for
patient caregivers to have a clear and concise way to discuss end of life care
options for patients facing a future of severe dementia.

For example, how should a physician
respond if a patient says in a state of capacity that he does not want to live
when he becomes fully demented? What are the obligations of his caregivers to
respond to his likely experiential interests after he loses capacity,
especially to provide something as basic as food? When is it permissible to
discontinue nutrition and even hydration? These and other questions must have
answers that are ethically and legally permissible, amenable to simple
explanation and implementation, if advance directives are to be of value to the
patient. In what follows I’ll attempt to sketch a strategy.

To begin, instead of focusing on
fleeting selves during dementia, it is important to see each patient, from
capacity to incapacity and death, as an individual human being with changing,
but organically connected interests over time. Each individual patient will
remain, as all other human beings, a single, evolving biological being, often
within a network of relationships, until death. Patients should be assured that
as they change over time that they will be cared for at every stage and their
comfort will be assured. For those few patients with capacity who might say, “I
do not want to be provided food in any form when I lose capacity,” they need to
be educated about what might lie ahead. If after losing capacity, they should
be informed that a desire to eat and enjoy other pleasures, such as social
interaction, is not precluded by the progression of their disease; they should
reassured that they will receive pleasure and comfort from these experiences.
In short, during the times the patient is still enjoying daily life, all basic
supportive measures, such as food, water, social interaction, and nursing care
will be provided; however, regarding medical interventions, only those life
prolonging interventions will be provided that carry no burden or suffering, such
as a simple antibiotic for an infection or pneumonia (and even some of those
may be omitted if so specified by the patient in advance). But as the patient’s
natural, biological experiential interests begin to wane, especially with the
loss of appetite, there will be, accordingly, less intensive responses to match
the patient’s changing needs. This pattern will continue until the patient’s
interests are such that feeding and fluids are no longer required because the
patient is no longer interested in eating. At that point, the patient will be
in the final stages of dying, which requires only pain management, touching,
and all appropriate forms of comforting. In summary, the patient’s critical
interests will become more prominent as a factor in decision making as the
patient’s experiential interests wane.

I have greatly summarized a complex
plan of comfort care for patients with advanced dementia, a project on which I
am working in much greater detail. My point in developing this plan is to
neutralize the potential concerns over incongruences between critical interests
and experiences expressed by patients with severe dementia that would otherwise
undermine the validity of advance directives. We cannot allow the complex
challenges of caring for dementia patients become a barrier to patients being
given the opportunity to plan for their future medical care.  

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI’s online graduate programs, please visit our website.

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