The Danger of Speaking for the Dying Patient with “Intellectual Disabilities”

After suffering from Alzheimer’s disease for more than two decades, my grandma quietly passed away at a nursing home in California several years ago. This may sound like a story too common to tell in the United States. However, my grandma never wanted to go to a nursing home in the first place. As someone who spent the majority of her life in China, she only immigrated to the United States to reunite with her family after my grandpa passed. When her conditions first developed, her own children (my extended family who lived with her) considered her a burden and liability, and sent her away against her will – a stark violation of Confucian filial piety cherished in my culture. After being admitted to a public nursing home with very few Mandarin speaking staff and patients, her condition deteriorated rapidly, partly as a result of language barriers and general isolation from family and friends. She soon lost most of her basic functioning and remained in a borderline vegetative state for the last few years of her life.

I could not help but think about my grandma when I read a recently published piece in New York Times. In “A Harder Death for People with Intellectual Disabilities,” Tim Lahey, M.D., argues that current laws make it too difficult for the “loved ones” and legal guardians of patients with “intellectual disabilities” to make end-of-life decisions on behalf of patients who cannot speak for themselves. Based on his own experience with patients in intensive care units, he criticizes the burdensome legal procedures required in some states to allow legal guardians to “decline life-sustaining therapies” and medical providers to “avoid giving unwanted care that isn’t likely to heal” these patients. From his point of view, questions a judge may ask such as “how sure is the guardian or family member of the patient’s wishes?” and “what’s the doctors’ best estimate at a prognosis?” are slowing down the “prompt, patient-centered, bedside care that all of us deserve.”

What struck me the most about this piece was the claim made by the patient’s legal guardians that “the patient did not have adequate quality of life.” Lahey corroborated this account by describing the patient as enduring discomforts and indignities, in that “his muscles grew weaker and stiffer. He developed skin sores and infections. He needed minor surgeries to place the tubes that delivered artificial nutrition and artificial breaths every hour of the day.” The same exact imagery is cemented in my mind after visiting my grandma during her worst times. I even remember my relatives (legal guardians of my grandma) discussing whether they should just allow her to die. The same rationale was invoked: she was suffering too much; perhaps death is more humane than living in such conditions. They believed that her life was no longer worth living, but ultimately decided not to intervene (partly due to my parents’ protest).

Nonetheless, arguments could be made that these so-called “legal guardians” were at least partially responsible for the rapid worsening of my grandma’s conditions. It was they that found her presence in their home burdensome, and sent her away without her consent. Given that self-interest, or selfish interests, could be at play in end-of-life cases, including financial benefits of inheritance, why should the law grant legal guardians more power over the life of patients with intellectual disabilities? What if the same guardians are also responsible for the development of these intellectual disabilities in the first place? Studies have shown that elder mistreatment could result in family distress and impaired life functioning, and is linked with a great number of health problems, including increased mortality. Elders with Alzheimer’s disease are especially vulnerable. Granting those responsible for mistreatment of the elderly the right to speak on their behalf on life-and-death matters is disturbingly dangerous.

More generally speaking, relaxing legal restraints placed on those speaking for the “intellectually disabled” could easily lead down a slippery slope. Intellectual disabilities are not homogeneous: some are present from birth while some develop later in life, and there is a wide range of severity. Codifying intellectual disabilities as a separate category in legal codes regulating end-of-life decision-making fails to recognize the diverse intellectual limitations and capabilities of these patients. Who can judge that those with certain intellectual disabilities cannot express themselves in other, non-neurotypical ways not yet recognized by mainstream understandings of what constitutes a patient’s will and consent? To silence them and strip away their agency on matters of health and life is a grave manifestation of neurotypical bias and prejudice. These biases, coupled with the potential self-interests of the legal guardians, suggest that a more burdensome legal procedure regulating end-of-life decision-making is preferable to an uncritical acceptance of the naïve assumption that just because we are “family,” we have each other’s best interests in mind.

Perhaps, behind the façade of silence or the seeming inability to speak for years, my grandma was silently protesting against the neglect and mistreatment from which she suffered far more pain and intensity than her Alzheimer’s. Perhaps, she could also be calling for something she desired more than anything in life: a welcoming reunion with her children back in their spacious Silicon Valley homes.

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