Author Archives: Frank Wang

A Child’s View on Dying

     Families are sometimes reluctant to talk about death, and so, children first learn through fantasy: books, movies, games, and television shows. Gareth Matthew’s research showed that young children define death as a sleep-like state that one awakes from. By elementary school, they begin to view death as irreversible, and by the time they’re 9-10 YO, their perception of death becomes more adult-like, a total cessation of mental and physical function.

    Historically, western fairy tales tied death to morality and faith. Bad people stayed dead, and good people are immortalized. Not shielding children gave them the resources to confront the fear of death. Children constructed an idea of the natural death as peaceful. And by the early 20th century, Peter Pan’s childish notion that dying would be “an awfully big adventure” seemed forebode the overarching zealotous sentiment of WWI that confronting death was heroic. Afterwards, death was essentially unmentionable in children’s books and cartoons until the 70’s. With the decline of childhood mortality, talking about death with children became just more and more taboo.

    The majority of death in present-day media for children is portrayed as violent deaths. Specifically, there’s an idea in games where players can cause death or die without much consequence, beyond waiting to respawn. And perhaps an intrinsic aspect of escapist fiction is constructing a “safe” world where death does not apply. But, many children usually can dissociate these ideals from true dying. They form an image of natural death as peaceful, perhaps surrounded by loved ones, and with hope in a kind of immortality. While one route can be disney-esque, portraying resurrection as possible with love, another route in children stories is by showing a character’s death as irreversible, authors further the message that their live’s were valuable and precious.  People must leave when their “job is done”. It’s tragic otherwise. But, they also learn they’re not alone in their grief. Life cut short are central to the narratives children routinely experience. In times of crisis, adults seem to revert back to these preserved childhood definitions. and perhaps discover solace even if they no longer believe in the fantasy.

Advanced Directives

    Numerous studies have found critical deficiencies in the healthcare of the dying, such as being unnecessarily prolonged, expensive, painful, and emotionally taxing for both the patient and their family members. Completing an advance directive could offer a solution, enabling people to plan for and communicate their end-of-life wishes in the event that they’re unable to communicate. In essence, advance directives describe four legal documents: the living will, the medical power of attorney, the DNR, and donor registry enrollment form. But they aren’t always about stopping care. They’re about having frank conversations with loved ones, making sure they get the care they want.

    While there’s little data on advance directives, a 2013 survey (n = 7946) of individuals ages 18+ showed that only 26.3% had advance directives. The chief issue was that many were unaware they existed. Higher advance directive completion correlated with age, education, and income; they were also less frequently completed among non-white demographics. This data points to racial, economic, and educational disparities, a result of several factors, including distrust in the health care system, cultural differences, and poor patient-doctor communication.

    During the 2009 healthcare debate about legislation to cover uninsured Americans, the government was accused of creating “death panel” where bureaucrats could choose whether the elderly deserved healthcare on a case-to-case basis. They pointed to Section 1233 of HR 3200, which reimbursed physicians for discussing end-of-life care options with patients. The issue was highly politicized. Many of the politicians who had attacked the Affordable Care Act for death panels previously supported advance directives. The result led to a removal of the provision. When the Obama administration tried to add them in to regulations again in 2010, the political climate wasn’t ready, and they backed off.

    A few months ago, a new Medicare rule was approved, finally allowing physicians to be reimbursed for end-of-life conversations as early as 2016. The underlying logic is that many physicians don’t have time to discuss in-length all of a patient’s end-of-life options without these payment incentives. Thus, the autonomy to decide can become more integrated into the consciousness of the elderly Medicare hopes to help. Even then, I question whether people will be inclined to visit the doctor’s office for mere consultations, if they aren’t receiving treatment or leaving with a prescription. But the majority of Americans naturally avoid addressing end-of-life, so advocacy on the part of physicians to discuss the topic could make the difference. 

     Doctors could be motivated by the desire to cut healthcare costs by pushing patients to avoid potentially lifesaving procedures. In my opinion, they’re more biased towards keeping people alive, because it’s deeply ingrained in their medical culture. To do less may be incompatible with what they’ve been taught. In placing the responsibility of interpreting advance directives on physicians, they lessen the burden on family members during the dying process. Further research should examine how health care professionals react: whether they adhere to, misinterpret or completely ignore what’s written.