The following article was originally published in the Community Review newspaper in Harrisburg, PA, and is Part 3 of a three-part series on end-of-life topics by JFS executive director Barry Stein.
Your end-of-life wishes can change as your circumstances change. I was reminded of this fact when I recently saw my doctor for a physical exam and he asked me if I had completed a health care proxy with advanced directives. “Yes indeed,” I answered without hesitation. “But I have no idea where it is. Regardless,” I went on, “perhaps the time has come for me to rethink my own end-of-life outlook.”
As I left my doctor’s office with a blank health care proxy form in hand, it occurred to me that my recent experiences as my Uncle Marvin’s care giver have given me pause about what kind of interventions I want for myself. My uncle always insisted on having all measures taken to save his life, yet chose to stop his blood transfusions in the face of his worsening leukemia. So, maybe this tendency to re-examine one’s wishes over time is more prevalent than we might think. In my uncle’s case, his decision to decline further extraordinary measures to save his life was predicated on feeling increasingly depleted and beleaguered by his illness.
Nonetheless, the path to recognizing when “enough is enough” is far from a straight line. This reality was sensitively captured in Lisa Genova’s most recent novel, Every Note Played, in which she depicts the transformative experience of a middle-aged man named Richard, who is struggling with ALS. In the novel, Genova chronicles how Richard’s outlook changes dramatically from the time he’s first diagnosed in his 40’s until the final stages of his life.
Richard’s initial reaction to the diagnosis was filled with the bravado of a relatively young man. At first, he convinced himself that the disease would only progress to a point and, in the event it got worse, he would simply ask to be put out of his misery. However, as Richard’s condition continues to worsen, he finds new purpose in living through the pain and suffering as he begins to reconnect and reconcile with estranged family members. Only when faced with the reality of needing a tracheotomy and the awareness of the incredible financial and emotional burden it would place on his family, did he choose to die as comfortably and peaceably as possible.
It is not unusual for a person diagnosed with a terminal illness and staring one’s mortality directly in the face to embrace life-saving interventions in lieu of an earlier directive not to resuscitate. In recent decades, Time-Trade-Off (TTO) has become a popular technique in health economics research for measuring the quality of life experienced by a person or group of people with chronic illness. For example, an individual with a chronic disease is asked how many years of life she is prepared to give up in order to live a shorter period of time in full health. Although research studies conducted over time have generated less than consistent outcomes, many of those studies suggest that the promise of being illness-free is not enough of an incentive for someone to forfeit longevity.
Whereas a decision to forego a short-term benefit in order to live longer with much pain and suffering is certainly influenced by one’s religious faith and family circumstances, it can further be reinforced by knowing or reading about someone who has recovered from a life-threatening illness. I was recently reminded of how impactful and inspiring these real-life stories can be after reading My Stroke of Insight by Jill Bolte Taylor.
In her book, Jill Bolte Taylor, a Harvard-trained brain scientist, describes her eight-year-long, but complete, recovery from a highly debilitating stroke experienced when she was 37 years old. Taylor uses her journey back to health to explore the delicate balance between resigning to one’s illness and fighting to regain full functioning. She gives us a rare glimpse into both the tension and indispensable connection between the creative energy of the right brain and the analytic nature of the left. Taylor’s description of celebrating each small step in her recovery, from breathing to swallowing to standing is nothing less than inspirational.
Let me return to decisions I am about to make about my own health care proxy and advanced directives. It almost goes without saying my decision will be informed by recent lessons I learned from being my uncle’s health care proxy as well as exploring the application of Jewish medical ethics in life and death situations.
Looking back on my uncle’s end-of-life journey, I’m reminded of Mark Twain’s observation that “truth is stranger than fiction.” Even now, it’s hard for me to imagine that my uncle’s deeply held belief that all measures be taken to keep him alive would eventually lead me to reconsider my own philosophy of life. After all, as a younger man, I never would have thought twice about “pulling the plug” sooner rather than later.
Interestingly enough, I now realize that once I stepped outside my comfort zone and committed myself to honoring my uncle’s unwavering desire to live at all costs, I gained a new-found respect for the value he placed on the gift of life. Furthermore, I’ve learned that medical decision making within a Jewish ethical framework is far from being an all-or-nothing proposition. To the contrary, I have discovered that Jewish medical ethics entail a highly nuanced approach that recognizes the imperative to preserve life while at the same time striving to minimize suffering and not prolong death.
The overarching consideration emphasized by Jewish sources with regard to medical decision making is the distinction between acts of omission and comission. Withholding treatment under certain conditions is certainly permitted; whereas withdrawing treatment is generally prohibited unless a person is actively dying. Rabbi Yitzchak Breitowitz succinctly sums up when those conditions come into play in his article “The Right to Die: A Halachic Approach” on jewishlaw.com:
Most rabbinical authorities have sanctioned the patient’s right to decline treatment provided a number of very specific conditions were met. First, the patient must be in a terminal condition, that is…the patient is not expected to live beyond a year. Second, the patient suffers unbearable pain and suffering. Third, the patient has indicated that he or she desires not to be treated. In the event the patient is incompetent or unable to communicate his decision, next-of-kin may make such a decision based exclusively on what they feel the patient would have wanted….Fourth…the patient may decline surgery, chemotherapy, and painful invasive treatments but may not decline food, water, or oxygen (which are the normal sustainers of life, the withdrawal of which may be tantamount to murder or suicide). Most decisors would…emphasize that even if the patient is halachically-obligated to take artificial nutrition, he should not be force-fed or physically restrained.
Knowing what I know now, I intend to revise my advanced directives so as to increase rather than minimize the likelihood of medical interventions. Whereas the earlier version of my health care proxy essentially precluded intervention (a DNR with an order to cease hydration), I will now inform my health care proxy to allow for the provision of most medical interventions in all but extremely dire circumstances with the exception of a breathing machine. I have decided to stay away from a breathing machine in those instances where my chances of recovery are highly questionable since removing the ventilator for the most part would be regarded by Jewish law as “causing death” rather than “letting die.” Last but not least, my advanced directives will be spelled out on the “Appointment of a Health Care Agent” form developed by the Rabbinical Council of America that differentiates between the likely reversibility and irreversibility of brain damage or a persistent vegetative state.
There’s no denying Benjamin Franklin’s oft quoted cautionary remark that “in this world nothing can be said to be certain except death and taxes.” However, how one chooses to die and when, is not a foregone conclusion. A health care proxy is not irrevocable; you can change it as you see fit. With this in mind, perhaps it makes sense for each of us to periodically review and discuss our advanced care directives with our family members and revise them based on recent life experiences and changing circumstances.
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