Posted on January 27, 2020 at 9:20 AM
The right of a person to live out his or her own particular life plans is an important value we all hold dear. To the extent possible we should honor the prior expressed wishes of individuals after they have lost capacity and provide medical care consistent with those wishes. In general, it seems to me that a patient’s right to refuse any and all medical treatments while having capacity should extend to the future during the time of incapacity.
The scope and authority of an advance directive is an important matter for many patients who fear being over-treated and having the dying process drawn out on machines in the ICU. But many aging individuals also fear becoming demented from Alzheimer’s disease or other forms of dementia and living for years while having lost all connection with their past identities and relationships. More and more people are finding the prospects of living into dementia intolerable. As Norman L. Cantor writes in the Hastings Center Report, “(f)or…people, like myself, protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect. The critical question for those of us seeking to avoid protracted dementia is how best to accomplish that objective.” It’s important for the aging public, as well as the physicians advising them, to be clear about the options that are available.
It’s important to note that many individuals diagnosed with dementia still have capacity and therefore have the right to have their diagnoses and prognoses disclosed to them by their physicians. Unfortunately, according the Alzheimer’s Association, such disclosure occurs just under half the time. This means many patients may be missing the opportunity of asserting their right to complete an advance directive and to spell out their wishes about future medical care. For those who do complete advance directives at this point, it seems to me that patients have the clear right to say that they wish to refuse any and all life-prolonging medical treatments from that time on. Obviously, this includes avoiding intubation, G-tubes, dialysis, etc. But what if the patient after entering into a state of dementia is actually doing well? What if he or she seems happy living in a facility or at home, socializes, takes walks, eats heartily, and even interested in sexual activity? What if such a patient contracts pneumonia and has an advance directive indicating no life prolonging treatment? Does this apply to antibiotics that would reverse a life-threating disease and return the patient to his or her former baseline? My answer is yes. But for such simple, non-invasive measures like antibiotics, individuals should state explicitly they wish to refuse them in the advance directive while they have capacity.
But there is still the possibility of a person remaining physically healthy for many years while living in a state of dementia. Unfortunately, advance directives cannot prevent this eventuality. The only option while the individual with newly diagnosed with dementia still has capacity is to preclude entering into dementia by voluntarily stopping eating and drinking, as Cantor points out in his article (VSED). I see no ethical or legal reason why an individual could not make such a decision and act on it.
One final issue that comes up for those who feel strongly about not extending their lives during dementia is around food. One point that should be clear: individuals cannot say in an advance directive that they do not want to be given food during dementia. This would mean that caregivers would have to deny food to hungry patients, thereby allowing them to starve. This seems clearly ethically, and probably legally, unacceptable. Giving food to a person who is physically healthy, even with dementia, is a basic form of comfort care, not directly a life-prolonging type of support. The sticky issue here arises after patients are unable to feed themselves and handfeeding becomes necessary. Can someone say in an advance directive that he or she do not wish to be hand fed under any circumstances?
To me the answer to this question also goes beyond what should be included in an advance directive. Food at this stage of life should be viewed entirely as a source of comfort and should not become a burden. The determination of whether food is a source of comfort or is becoming a burden is a clinical determination. Some patients who have stopped self-feeding may still enjoy food via handfeeding. But when a patient begins to show indifference, it is time to stop. This seems to me a matter of providing the standard of care, which can assure all patients are treated humanely until death.
In conclusion, advance directives are important to avoid unwanted medical interventions, including simple interventions to address life-threatening conditions. But advance directives cannot preclude someone from entering dementia—to do that, one needs to consider VSED while having capacity. At the point of dementia, standard of care comfort care, with an appropriate strategy of feeding, should be provided.
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