Advance Directives and Dementia

A standard practice in most estate plans is to include advance directives which state your wishes for health care, end-of-life situations, do-not-resuscitate (DNR) orders, life support, and mental health. These advance directives and medical powers of attorney have come under scrutiny in the last few years for a number of reasons. Some argue that the directives are not specific enough. In other cases, court battles have arisen in attempts to settle disputes about whether a directive should be enforced.

One such case recently occurred in Oregon. In this case, the patient had previously signed an advance directive after being diagnosed with early-onset Alzheimer's disease to prevent her life from being prolonged once the disease had progressed in severity. However, she is being kept alive by assisted feeding (i.e., being fed by hand by caregivers) because while her advance directive states she wants to refuse feeding through tubes and life support via mechanical assistance, it does not exclude food and drink being delivered by hand. The case then entered a legal battle because of the discrepancy between the nursing practices and what the patient's advance directive spelled out. The patient's husband and daughters asserted that the patient would not want to be kept alive in this manner, and that the acceptance of food is an automatic response which does not indicate a change in her wishes. The full article from Kaiser Health News can be found here: https://khn.org/news/despite-advance-directive-dementia-patient-denied-last-wish-says-spouse/

In cases of dementia and Alzheimer’s, the lack of understanding about dementia plays a role in situations like this one. Dementia is progressive, but is not a disease in which the patient is fine one day and severe the next. The disease is ever-present, and once it progresses to the stage in which a person can’t care for themselves, their actions and words may not be able to be trusted as indicating changed wishes because the level of awareness and cognition has deteriorated beyond the point of being able to grant informed consent. Voluntary versus involuntary actions may be misunderstood by loved ones as well as caregivers. In the article above, the patient opening her mouth to accept food is part of the issue – the lawyer appointed to represent the patient argued that this action indicated her wish to continue care, while the patient’s husband argued it was an involuntary response from sixty years of life. In addition, the level of cognition required to give informed consent is fairly high, and evaluating a person’s ability to grant consent is difficult. Expressions of consent or expressions of understanding the consequences of consent do not necessarily mean that consent is given or understood. An adult with limited cognition may say "yes" without actually comprehending what it is they are agreeing to. Patients with advanced Alzheimer’s or late-stage dementia have limited to no ability to consent once the disease has progressed, and changing an advance directive or signing a new one becomes difficult.

This doesn't mean that you should not complete advance health directives, however. In most cases, these directives are instrumental in determining a patient's wishes and helping caregivers to comply with those wishes as closely as possible. Cases like the one in Oregon do raise issues of whether advance directives should be more comprehensive and include additional situations such as caregiver-assisted feeding. In Maryland, we now have the MOLST form, or Medical Orders for Life-Sustaining Treatment. This form is signed by a physician after consultation with the patient, patient's representative, or based on the advance directives. The form travels with the patient and every time a physician fills out the form, copies are made to be given to the patient. The MOLST can be used on its own or in conjunction with advance directives. It covers additional situations, such as blood transfusions, CPR, antibiotics, medical workups, and more.

You can find more information about advance directives in Maryland from the Maryland Attorney General's website, which also includes sample forms: http://www.marylandattorneygeneral.gov/Health%20Policy%20Documents/adirective.pdf