End-of-Life Discussions Before the End of Life

As the complications of my pregnancy continued to get increasingly worse, with dire warnings from my doctor that I could possibly hemorrhage at any moment, Patrick and I knew then that I could die.

Both of us deal in the business of death: Patrick as a pastor and me in my current work with the families of organ donors. Maybe it’s morbid, but working so closely with death leads us to use a lot of dark humor in order to cope.

So, one night to lighten the mood while I was still relegated to bedrest, Patrick joined me, and we watched an episode of “Seinfeld” in which Kramer decides to make a living will. He has just started watching a movie about a woman who has fallen into a coma, and he has become petrified of the prospect that a similar fate may happen to him. With the help of the cold-hearted Elaine, Kramer goes to a lawyer (brilliantly played by Ben Stein) and he walks through his wishes in every possible worst-case scenario. By the end of the episode, with cinematic predictability, Kramer has had an accident and finds himself in the hospital. And there, of course, while Kramer is asleep, Elaine is looking for an outlet for the VCR and Kramer awakes in terror just at the moment when she dramatically pulls the plug.

In a somewhat similar way, Patrick and I spent those few weeks leading up to my own near-death discussing my own wishes for every possible worst-case scenario that we may face.

Some were joking. As I warned Patrick, I would forever haunt him if any doctor tries to declare me “brain dead,” and there is no note in my chart that initially reads, “Family is not yet accepting of medical diagnosis.” In my work, I have seen too much. “Give me a little bit of time!” I pleaded. “And,” for good measure I added, “if it is [insert the name of a certain doctor I work with] definitely get a second opinion!”

Also, it was determined that my mother could make no medical decisions on my behalf, after she threatened to donate my eyeballs against my wishes. “You’ll be dead,” she threatened, “You won’t care!” There is a line on every one of my organ donation forms at work that reads, I do not know of any objections that this person has to this donation.” My mother would have lied through her teeth.

But my other requests, inevitably, became much more serious – I am an organ donor. I do not want to remain on a ventilator forever if my prognosis is poor, but because I am still so young, I do want doctors to first attempt all heroic measures possible to save me. If I should die, I want my body cremated, and buried alongside my sons. I hope Patrick would one day marry again – but only after giving me an adequate time of mourning. He told me, with a wink, that he would give me an hour before he had to move on.

We discussed each of these wishes at length, knowing at the time that they were no longer abstract concepts to be remembered in some far off future. Bearing such an intimate witness to death in our work, neither of us was naïve to the potential that my dying was a real possibility.

Our society would like to relegate death to the dark corners of life where we do not have to see it. Desperately, we try to deny death’s very existence. We hide it away in hospitals. We stigmatize discussing it openly or frankly, making talking about death taboo. We embalm our bodies, and we dress them and paint them to make them look alive. Or at some services, the body is absent entirely, with pictures and other memorabilia taking its place.

And our society would like us to believe that we are immortal, that we will never age, that our skin will never wrinkle and hair will never gray (with the right products, of course), and that with enough gluten-free, fat-free, and organic whole foods and heart-pounding exercise we will never die. In this culture of death denial, the gym becomes our temple, our diets are our religion, and we have been transformed into death-defying gods.

Yet, Patrick and I do not have the luxury of denial. Perhaps we know too much, because we have seen too much. I have personally had pregnant patients and postpartum patients, who have died of complications from their pregnancies. In my most tragic memory, once when I was at a hospital on another case, a woman who was not my patient was rushed to the ICU after experiencing what would be a fatal blood clot during childbirth. As the doctors were performing CPR on her, they brought her baby to her bed in hopes that his cries would encourage her to fight, to breathe, to live. That baby’s screams still haunt me, a lasting reminder that I am no different than her and that life is not guaranteed. It could happen, and in those moments leading up to my own crisis, I knew intimately that it could happen even to me.

No one is promised old age, as much as we assume it. We wrongly presume that those who are chronologically older are closer to the end of their life. And thus, we assume that they are the only ones who need to worry about these important end-of-life discussions. Yet, I cannot tell you how many families I have sat with whose loved ones have died too young, who when I ask them, “Would your loved one have wanted to be an organ donor?” their eyes go blank and their faces become crunched and quizzical as they are forced to answer that they have no idea. “We never discussed it,” they say, overwhelmed with crisis and filled with worry about making the wrong choice.

Having these discussions is hard, especially when you do not want to even fathom it, afraid that just by mentioning death’s very existence that you may jinx it and you may somehow bring its reality to life. Nevertheless, having these hard discussions now, before crisis strikes, is vitally important. By making your wishes known, you save your loved ones from having to guess at those decisions on your behalf. You spare them that pain.

I say from experience, it is far easier to tell a family, “Did you know that Jenna made this incredible choice that, if something like this should ever happen to her, she would want to donate her organs to help other people?” You should see the sigh of relief when they know that their loved one has made this choice for them. And you should feel the sense of pride that most families feel, knowing that their loved one has heroically chosen to give the gift of life to others.

So, my friends, I encourage you to have those hard conversations – no matter your age because a long life is not guaranteed. Talk to your family. Write a living will. Make your wishes known. And (shameless plug) become an organ donor!

 

 

 

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