My father, my brothers, and my best friends have all heard the lecture: If I’m in a coma, and it looks like I’m not getting better, pull the plug and give away all my organs — everything that’s useful. Save all the lives!
However, if there is any chance that I am going to make it, and it’s been more than 14 days, make sure you bring in someone to thread my eyebrows. I am aware that this conversation is not a normal one to have, but then again, nobody has ever accused me of being normal.
For those of you who do not share my genetic predisposition for Sesame Street’s Bert unibrow — well, first of all, I envy you. I have delayed dinner plans, considered bangs, and have argued with supervisors about time off for this particular errand. I will do just about anything to keep my eyebrows in the plural. If I am languishing in a hospital bed, I know that people will visit and see just how gross my face can get.
This is unacceptable.
When I was in my 20s, I was engaged to a lovely man, a rabbinical student named Rafi. He had suffered from a variety of ailments due to an underlying disorder. Over our years-long relationship, there were multiple hospital admissions because he needed to be monitored or treated. Yet in all that time it never occurred to me to ask, “What do you want us to do if you’re dying?” In hindsight, as his health kept deteriorating, I really should have asked. But I didn’t ask. And neither did his family.
This, like my overgrown eyebrows, was also unacceptable. We talked about everything else — the accommodations we would need to make when he came home with this deficit or that medication, how I thought we should probably get engaged if I was going to be sleeping overnight in a back-breaking chair next to his hospital bed, how maybe it made more sense for me to be the primary breadwinner in our life together, given his hospitalizations.
When he ended up in a coma, we did not know what to do. What would he want? How long would he want us to have his body be an ICU-based battleground for modern medicine? What would he want his end-of-life to look like? What about his funeral? In denial about just how sick he was, Rafi had never told us what he wanted. So family and doctors, clergy and advisors all teamed up to answer these questions as we imagined he may have answered them, were he conscious.
After nearly two weeks of adjusting what appeared to be an uncomfortable breathing tube, we learned that the medical team had left his beard untouched, assuming (given his rabbinic training) he was too religious to shave it off. We didn’t even know we had to tell them it would be fine with him to have his beard removed for this purpose. They shaved it off within the hour of this revelation.
In the end, there was nothing more anybody could do. He was going to die, and we were doing our best to answer those end-of-life questions for him, authorizing beard removal and, later, ventilator removal. Unlike the landmark Terri Schiavo case — in which family members fought over whether or not to remove a feeding tube from a woman in a persistent vegetative state — all concerned parties reached the same conclusion: It was time to end care and eschew heroic measures. After a monthlong coma, after a life filled with thousands of hours teaching and inspiring, epic amounts of friendship and love, and a million what-ifs, my fiancé became my dearly, departed fiancé, dying just a few days short of his 28th birthday, and a few months short of our wedding.
In the years that followed, I have endured arguments with family members about my end-of-life wishes. My father, a doctor, is practical, and my mother refuses to discuss these things with me. I have expressed feelings about comas, about terminal illness, about organ donation, about traumatic injuries, and, of course, about my eyebrows. None of these things are written out on paper. They are neither formalized or notarized. They are, instead, in the brains of my father and a few of my closest friends.
They should be on paper. They really should be on paper.
People don’t want to think about unwanted body hair, but most agree that what they do with body hair is an individual’s choice and that many of the removal options are painful or unpleasant. And that’s just body hair. There are plenty more consequential decisions to make, and write down, too. If a person can have such particular feelings about eyebrow maintenance, then shouldn’t they also express their feelings about hospice? Palliative care? Organ donation? Medication? Medically induced comas? What a person considers to be the tipping point in determining quality of life after a traumatic injury?
It is painful, and sometimes nearly paralyzing, for people to talk about their own and loved ones’ future deaths. But everybody is going to die, and how you deal with that is also a choice. If you don’t make your choices known, you may very well be leaving your loved ones in the lurch, with an extra layer of pain, just as you leave them on this earth.
Let’s all go out and get our living wills finalized, shall we?
This post is part of a series supported by MJHS Health System and UJA-Federation of New York to
raise awareness and facilitate conversations about end of life care in a Jewish context.
To learn more about the role of hospice and its value to patients and families click here.