Question: Have you completed an advance directive for medical care and assigned someone you trust to represent your wishes if and when you are unable to speak for yourself?
Answer: According to recent studies, barely more than 1/3 of the population have done so. The rest of Americans have left it up to the medical professionals and ill-prepared family members to decide when and how to provide life-prolonging treatments.
Those of you who have completed an advance directive for medical care might not have included in that document a likely situation for a leading cause of death in this country: dementia. Missing in standard documents, for example, are specific instructions about providing food and drink by hand as opposed to through a tube.
A leading cause of death
Advanced dementia, including Alzheimer’s disease, is the sixth-leading cause of death in the United States. It is the fifth-leading cause of death for people over 65 and the third-leading for those over 85. Yet, once the disease approaches its terminal stages, patients are unable to communicate their desires either for or against life-prolonging therapies.
Diagnosed with Alzheimer’s
“Oh my God, what can I do? I’ve just been diagnosed with Alzheimer’s disease. I saw my grandmother die from it, and I don’t want to die that way,” a mother stated to her daughter.
Some 6 million Americans have Alzheimer’s disease. That number is expected to increase to 14 million by 2050. Many people fear living for years in late-stage dementia after losing the ability to communicate, dress themselves, understand their surroundings and recognize their loved ones.
Thus, there is the need for an advance directive while the person still has the mental capacity to make a choice. That advance-care directive should bring forward the issue of feeding, while suffering from dementia, seeking to clarify a critical issue in end-of-life care, a frequent point of debate and anxiety.
Without an advance directive, most people with advanced dementia are spoon fed, often for months or years. Only when patients begin to cough and aspirate liquids into their lungs are efforts to provide assisted oral feedings stopped.
Dr. Judith Schwartz, clinical director of End of Life Choices New York, is spot on when she says: “Feeding tubes are not the issue; they’re not done when dementia is terminal. Instead, a caregiver will stand patiently at the bedside and spoon food into your mouth as long as you open it. Opening your mouth when a spoon approaches is a primitive reflex that persists long after you’ve lost the ability to swallow and know what to do with what’s in your mouth.”
When patients can no longer swallow what they are fed, they might choke and aspirate food or drink into their lungs, resulting in pneumonia, which adds to their misery and hastens their death.
An advance medical directive can provide an opportunity for patients to make their wishes about assisted feeding known to family members and clinicians if they should develop significant cognitive impairment. It is a potentially important addition to standard living will and health-care proxy documents for those who would like to set these limits.
Signs of late-stage dementia
Dr. Anne Kenny, a geriatrician and palliative-care specialist, said three characteristics define the late stages of dementia indicating that the patient is nearing the end of life: losing the ability to use the toilet, walk and swallow independently.
Withholding food and water by mouth
One option for ensuring that a person does not live in severe dementia is to use advance directives to withhold food and water by mouth. The driving element behind voluntarily stopping eating and drinking is that forcing people to ingest food is an objectionable intrusion on bodily integrity, privacy and liberty as is imposing unwanted medical treatment.
Thus, if incompetent people do not lose their rights to refuse life-saving treatment, and if people when competent have just as strong a right to voluntarily stop eating and drinking as they do to refuse life-saving treatment, then people do not lose their right to voluntarily stop eating and drinking when incompetent, either. They only have to exercise it by an advance directive.
Tube feeding
The U.S. Supreme Court’s decision in Cruzan v. Director, Missouri Department of Health supports a patient’s right to forgo feeding tube insertion, through a proxy decision-maker or advance directive. But despite a clear right to forgo a feeding tube, feeding tubes are common in patients with advanced dementia in nursing homes, whereas orders to forgo artificial hydration and nutrition are not prevalent in this population.
Last word
People with dementia who are no longer competent have limited control over how their lives end. But an advance directive to withhold food and water by mouth could be used to ensure that a person does not live for years in severe dementia. Such directives are arguably already legal.
With the advice of medical personnel and clergy whom you trust, show your family the path you want to follow so that they don’t have to choose it for you.
In making arrangements of great ethical importance and emotional complexity, it’s wise to agree to reasonable conditions in advance. Absent some compelling reason, arising from facts unforeseen when the arrangements were made, there is a strong moral reason to keep your word.
To ask a legal question, email AskAttyBernie@timesonline.com or send mail to Ask Attorney Bernie, c/o Beaver County Times, 400 Fair Ave., Beaver, PA 15009.