Saturday, June 26, 2004
Shavua tov! [Good week!]
I wrote that the final day of the Interseminary Institute was to be a surprise. It was, in fact, several surprises.
The most striking experience of the day, for me, was an exercise in the ICU [Intensive Care Unit]. We were divided into two teams, each with its own scenario to role play. Our team was directed to choose a person to be the "patient," and then designate the other team members as family members. I volunteered to be the patient, so I took off my shoes and climbed into the ICU bed. Those places do not look the same when one is horizontal, I discovered. Then the "doctor" (actually an ICU nurse) came in to inform me and my "family" that I had had a bone marrow transplant after a long struggle with cancer, that it had gone well but that now I had had so much trouble breathing that they'd brought me over from the BMU [Bone Marrow Unit] to ICU. I was going to be put on a ventilator, and the staff needed to know if I and my family had discussed how far I wanted the hospital to go in prolonging my life, should my condition deteriorate. I would not be able to talk, once the tube was in my throat, so this was my last chance to give them directions about my care, and possibly (if all did not go well) my last chance to speak with them. Oh, and since I am already struggling to breathe, it is difficult for me to say more than a few words at a time.
I was myself, a 49 year old woman. My "mother," my "son," and my "husband" were with me. All of them were desperate for me not to die. I was sick and tired from months and months of increasingly aggressive cancer treatment, fatigue and nausea and mouth sores and goodness knows what else. My "mother" was very vocal, very talkative, not wanting to hear anything about me dying. The student playing her laid a very genuine feeling guilt trip on me about how I should not give up, that I couldn't die before her. She kept interrupting everyone in her desperation. My "son" (who looked remarkably like my real-life son, Jamie) didn't want me to die, either. He looked miserable. My poor "husband" couldn't get a word in edgewise. I couldn't say more than three words in a breath, and felt overwhelmed and guilty and scared (just how real was this going to be?) All of them were insisting, of course, we'll try EVERYTHING, and I (having spent the past two weeks getting a much clearer idea how miserable "everything" might be) was pretty sure that if a week on the ventilator didn't help, I didn't want more. But it was hard to tell them, and hard to convince them, and the whole thing was quite awful, even though it was only make believe.
WE NEED TO HAVE CONVERSATIONS ABOUT THIS WITH THE PEOPLE WE LOVE BEFORE WE WIND UP IN THE ICU.
There are legal documents, "advance directives," "Living wills," etc., for making our wants known in a legal way, but it is very important to TALK with family and friends and to share our feelings about extreme medical care. I don't want to spend my last conversation with my sons trying to communicate (or worse, trying to decide) how I feel about medical care at the end of life. I want to spend that last conversation telling them that I love them, if I am so fortunate as to have that chance. Even more, I do not want them to have the agony of deciding such things without my guidance: many families have to make decisions that leave them with years of guilt and pain, whether they elected to go ahead with increasingly aggressive measures (that only prolonged suffering) or elected to forgo those measures (and then wondered forever "if she might have lived.")
If you have an advance directive for medical care, be sure you talk to your loved ones about it. If you don't, put your wishes in writing and talk to your loved ones about it. It isn't pleasant, but you will come away with more of an appreciation for the life you've got, and if tragedy strikes, you will have given them a priceless gift.