Is it “an informed and thoughtful choice,” or is it a “disturbing” threat to “the most vulnerable in society”? A newly-drafted advanced directive in New York State is already provoking deep controversy among medical ethicists, geriatric physicians, and families of those with dementia.
The controversy is explained in this article that appeared last week on the authoritative medical website Kaiser Health News. As the article explains, while advanced directives are nothing new, an end-of-life agency in New York has just approved such a directive that for the first time allows people to “stipulate in advance that they don’t want food or water if they develop severe dementia. The directive, finalized this month by the board for End of Life Choices New York, aims to provide patients a way to hasten death in late-stage dementia, if they choose.” By stating in advance that even food and water are to be withheld, patients who sign this new advanced directive are hoping to circumvent present laws that prevent those with dementia from receiving medical aid-in-dying.
Medical aid-in-dying, or MAID as it is sometimes known, is the controversial practice of doctor-assisted suicide for terminally ill adults, either by withholding treatment or by administering drugs that hasten death. According to the Kaiser article, “Dementia is a terminal illness, but even in the seven U.S. jurisdictions that allow medical aid-in-dying, it’s not a condition covered by the laws.” That’s because under laws currently in force in California, Colorado, Oregon, Vermont, Washington State, Washington DC, and Montana, MAID can only be administered to patients with decision-making capacity, something those with dementia obviously lack in later stages of the illness. Because of the widespread dread of dementia, “increasingly patients are seeking other options,” the Kaiser article reports.
The New York document is one such option. It offers patients two choices: they can request “comfort feeding” which involves “providing oral food and water if a patient appears to enjoy or allows it during the final stages of the disease.” Or they can choose the option “that would halt all assisted eating and drinking, even if a patient seems willing to accept it.” According to advocates of medical aid-in-dying, this new set of choices represents “the strongest effort to date to allow people who want to avoid the ravages of advanced dementia to make their final wishes known — while they still have the ability to do so.” But critics disagree, labeling the New York directive “a disturbing effort to allow withdrawal of basic sustenance from the most vulnerable in society.” These opponents believe oral feeding and hydration represent basic care that should never be withdrawn as long as the patient is willingly taking in food and liquids. “It’s what they want here and now that matters,” said one anti-euthanasia physician. “If they start taking food, you give them food.”
As the Kaiser Health News article explains, advanced directives are written in order to specify care if a person is incapacitated. “They can confirm that a patient doesn’t want to be resuscitated or kept on life support, such as a ventilator or feeding tube, if they have a terminal condition from which they’re not likely to recover,” Kaiser explains. “However, the documents typically say nothing about withdrawing hand-feeding of food or fluids.” That’s why this new directive from New York is creating such a controversy. Most advanced directives in other states, including Washington State, say that “a person with dementia who accepts food or drink should receive oral nourishment until he or she is unwilling or unable to do so.” In stark contrast, “The New York document says, ‘My instructions are that I do NOT want to be fed by hand even if I appear to cooperate in being fed by opening my mouth.’”
(In Canada where medical aid-in-dying is part of federal law, the Alzheimer Society of Canada has spoken up about special protection recommended for those with cognitive impairment. Their statement reads, “The Alzheimer Society of Canada believes that because we cannot predict future suffering, providing advance consent for MAID should not be possible for people with dementia. The Alzheimer Society believes that people with dementia need to be safeguarded as they will be extremely vulnerable at the end of their life. People with dementia do not have the capacity to make an informed decision and consent to end their life at the later stages of the disease.”)
Of course, given the legal and ethical controversy sparked by the New York directive, it will eventually be up to the courts to determine its validity. “Whether the new directive will be honored in New York – or anywhere else – is unclear,” writes Kaiser Health News. The no-food-or-drink provision is against many state laws, and most care facilities will probably refuse to cooperate. As for physicians, “[they] have a duty to honor patient wishes, but they can refuse if they have medical or moral qualms.” As one expert in this area wrote, “Even solidly legal advance directives do not and cannot ENSURE that wishes are respected. They can only ‘help assure’ that.” We’ll keep an eye on this case and report future developments on the AgingOptions Blog.
Here at AgingOptions it’s not our place to tell clients and radio listeners what decisions to make when it comes to some of the most important personal and moral choices in our lives. We believe these should be made in close consultation with your family. But it is our desire to encourage everyone to plan ahead for as many as possible of the curveballs life will throw your way as you advance in years. Planning for a secure and fruitful retirement means you create a plan that allows you to protect your assets as you age and keeps you from becoming a burden to those you love, all while helping you escape the trap of unwanted, unplanned institutional care. We offer a unique and comprehensive approach to retirement planning called a LifePlan, weaving together the key strands of retirement – health, housing, finances, legal and family – into one unbreakable cord. There’s no retirement plan like it!
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(originally reported at https://khn.org)