Review: Life, Liberty & the Defense of Dignity

Leon Kass Life, Liberty & the Defense of Dignity: The Challenge for Bioethics is an oldie, but a goodie. The premier bioethicist explains the philosophy of dignity, and describes how various technological advances, including cloning and progress toward immortality, threaten dignity and humanity itself.

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The book is heavy stuff. In addition to the gravity of the subject matter, Kass dives into Kantian ethics, etymology, and the philosophy of science. Perhaps this will deter the casual reader, but those interested in the subject should appreciate the thorough eloquence of the author.

The main challenges Kass addresses include: the origins of procreation, genetic therapy, cloning, the sale of organs, the so-called “right to die,” the quest for immortality, and the nature of biology. Throughout, Kass argues in favor of restraint and respect for human nature.

I was particularly intrigued by those  passages of the book in which Kass opines on the nature of humanity itself, writing that the corporeal nature of our situation should not be discounted.

The point is crucial, and stands apart from the text that teaches that: everything high about human life – thinking, judging, loving, willing, acting – depends absolutely on everything low – metabolism, digestion, respiration, circulation, excretion. In the case of human beings, “divinity” needs blood – or “mere” life – to sustain itself. And because of what it holds up, human blood – that is, human life – deserves special respect, beyond that which is owed to life as such; the low ceases to be the low.

If the above quote gets you thinking, I highly recommend reading the remainder of Kass’ book! Indeed, given the attention on healthcare as of late, Kass’ theories are all the more timely and deserving of contemplation.

Live and Let Die? No Way!

You might have read the story of Jerika Bolen recently. I know my friends in the disability community have been trying to reach her and share their stories and resources. Unfortunately, it seems that the media and much of the non-disabled world is ready to say goodbye to her – and even facilitate her death.

According to the story, Jerika is 14 years old with SMA, Type II. Although the writer characterizes SMA as “an incurable disease,” many technological advances have made it possible for people with SMA to live productive, fantastic lives. I know this because I have the same disorder.

Jerika has expressed a desire to withdraw medical support. In her case, a ventilator helps sustain her life. She has apparently asked for the provision of morphine and the withdrawal of the ventilator so that she can pass away. Her mother – her natural guardian – has assented, and the death is planned for the end of the summer. I’m hoping someone intervenes.

I understand that SMA affects everyone differently. My sister has the same disorder, and we both have different medical concerns. One of mine, as in Jerika’s situation, is chronic pain. It took me more than a year before I found a doctor that was willing to work with me and identify means of managing the pain. That year was incredibly difficult; when I felt pain, I couldn’t focus on work, and when I didn’t feel productive, I felt useless. Relatedly, Jerika has indicated that she doesn’t like taking her pain medicine because it puts her to sleep. Alternating between sleep and homework makes her life dissatisfactory, she says; in effect, the pain is controlling her.

Obviously, I can’t speak to the degree of Jerika’s pain nor the treatments she has tried. However, I want to encourage her to keep looking for treatment solutions. Something tells me that waiting until one’s pain hits a “9” or a “10” is an ineffective strategy for managing chronic pain. Perhaps a new specialist is in order.

The other major issue to address is the fact that Jerika is a minor at 14 years of age. (Remember Julianna’s story?) Yes, 14-year-olds should definitely have input into medical matters. But input is distinct from decision-making capacity. I will concede that Jerika likely knows more about SMA than many of her physicians. But at 14 years of age, Jerika doesn’t know what the future holds or much of life beyond childhood.

I was miserable as a teenager. I think many kids are. But able-bodied children are taken to counselors to get their issues addressed. Why is it that kids like Jerika are simply handed a bottle of morphine?  The sad fact is that society devalues the lives of people with disabilities, of people like Jerika, of people like me.

Many outside of the disability community who have weighed in on this story have attempted to frame the issue in terms of respect for autonomy. This argument is disingenuous; a 14-year-old child does not have the legal capacity to make autonomous decisions in America. Respect for Jerika should be demonstrated as respect her life.

Dear(ly Departed) Julianna

My heart is broken. Many of you are familiar with the awful tragedies that have affected Orlando as of late – an absolutely horrific terrorist attack at a gay nightclub and a boy killed by an alligator at Disney World. But the death of Julianna Snow also occurred recently, going largely under the radar.

You may have heard of Julianna, the five-year-old girl who media outlets portrayed as choosing “heaven over hospital” in the event she got sick again. I, and many of my friends with neuromuscular disabilities, felt a special kinship with Julianna. She, too, shared a neuromuscular disorder that involved use of a wheelchair and respiratory therapy. (She also believed one could never have too much glitter, which I personally feel is a great motto.) News coverage and the underlying news item – that Julianna’s parents would allow a child so young to refuse life-saving measures – concerned us deeply.

Aside from personal views, the item was probably deemed “newsworthy” because it diverges from bioethical and medico-legal norms. Under American jurisprudence, one must give informed consent to treatment. Similarly, one needs capacity in order to exercise the right to make autonomous medical decisions. Traditionally, and as practiced by the American Academy of Pediatrics, whether or not minors can give consent is governed by the Rule of Sevens. That is, children younger than seven lack the capacity to make medical decisions; children ages seven through 13 have sufficient autonomy to be consulted in decision-making processes; and children ages 14 and above are sufficiently developed to participate heavily in the decision-making process. Keep in mind that Julianna’s parents surrendered decision-making authority to her at age five.

I don’t doubt that Juliana’s parents cared for her. Their compassion is evident in family video. But Juliana’s parents were heavily influenced by the medical model of disability; her mother is a physician. Because doctors cannot cure disability, they tend to be baffled by it. In fact, physicians regularly underestimate the quality of life experienced by people with disabilities. And there is no doubt that Dr. Moon (Julianna’s mother) glorified heaven, describing as a place where Julianna could run and play

Are you beginning to see the problem? Even in a wheelchair, even with a ventilator, Julianna could have driven quickly enough to feel the wind blow through her hair and engaged in a bevy of joyous activities. To demonstrate the bright future awaiting Julianna, Emily Wolinsky launched the Dear Julianna Project, administered by NMD United, a peer-led advocacy group for adults with neuromuscular disorders. Many adults with disabilities – from around the world – wrote not only to Julianna’s family, but to the families of other diagnosed children, to share that the future is not doom and gloom. We have each had our fair share of hospital stays and unpleasant medical procedures, but we are also attorneys, artists, spouses, entertainers, volunteers, philosophers, and parents.

I often wonder whether Julianna had the opportunity to read any of our letters (or have them read to her, considering her age). Her parents were aware of the Project, and claimed it was “basically a slap in the face.” Again, Dr. Moon’s reaction shows a real failure to understand the disability perspective.

I hope you are happy in heaven, Julianna, but I don’t care whether you remain in a wheelchair. It need have no bearing on the enjoyability of one’s existence.

The author wishes to disclose that she is a participant in the Dear Julianna letter-writing campaign, and also contributed financially to it.