Leon Morgenstern
Los Angeles, California, United States

How would I answer a question if the quality of my life depended on the answer?

A recent article about end-of-life decisions¹ discussed how a worried daughter had sprung the following questions as her father was about to undergo a very risky operation: how much pain he would tolerate for a shot at life, and what kind of life would still be worth living? To her surprise he answered that if he were still able to eat chocolate ice cream and watch football he would submit to a lot of pain to stay alive.

That would not work for me. I do not like chocolate ice cream, and watching football affords me no interest. I certainly would not acquiesce to a mostly vegetative existence if that were the only possible outcome.

If I were asked the same question, I might say that I would endure some pain to listen to a Mozart sonata or to read a good novel. Somebody else might opt for a fine cigar and a sip of vintage wine. Others would say they are not sure and can not think of anything. But really these are questions that should be asked long before an operation or critical treatment decision is imminent, particularly as we age or develop serious chronic illness. Unfortunately, we are cowards when it comes to facing mortality—in ourselves or in our loved ones.

Simple questions, such as those relating to ice cream or football, commit the sin of oversimplification. There is much more to talk about. How much suffering would I be willing to endure? What kind of identity would I be willing to settle for? How much would I be willing to depend on others to stay alive, clean, meaningful, and relevant or keep from imposing intolerable burdens on loved ones. The questions go on and on, far beyond ice cream, football, Mozart, or novels.

What can we do to make our preferences clearer and more explicit? I did several things. First, I wrote out a codicil to my ambiguously worded advance directive stating explicitly what I was willing or unwilling to endure and under what circumstances. That document read as follows:

Health care instructions

If I am conscious, considered competent, and possessed of decision making capacity, I wish to personally express my health care instructions orally or in writing and expect that they will be honored. If I am unconscious or otherwise not possessed of decision-making capacity AND I am ill with any terminal condition such as terminal cancer, non-reversible neurological disease (e.g. ALS, massive stroke, massive head trauma, Alzheimer’s disease, any brain injury that would result in my being in a persistent vegetative state, or locked-in syndrome), or multiple organ system failure, I DO NOT WISH MY LIFE PROLONGED BY INTERVENTIONAL THERAPEUTIC MEASURES. Such measures include: CPR, artificial nutrition and hydration via gastrostomy, tube feeding or total parenteral nutrition, endotracheal intubation, tracheostomy, pressors, renal dialysis, operative intervention for any condition, including life-threatening emergency, chemotherapy, radiation therapy, organ transplantation, transfusion, or any other measure except those necessary for my comfort care.

These instructions do not preclude measures to relieve pain, allay anxiety, or preserve my dignity as a person.

Signed: Leon Morgenstern       Date: ________________________

Witnessed by two non-related adults:

_______________________________________________                        _____________________
First Witness (print name then sign)                                                        Date signed

________________________________________________                      ____________________
Second Witness (print name then sign)                                                    Date signed

I read these instructions to my wife and son, explaining any terminology that was not clear to them. I discussed with them any reservations or comments they might have on either the conditions listed or the interventions refused. I admit that it was neither a pleasant conversation nor a comfortable one. There were still questions about uncertainty, the nuances of a diagnosis, or differences in medical judgment. But when we had concluded the discussion, I felt that I had clearly expressed my wishes and my fervent desire that they be honored.

I then went further. I read this document to a hospital seminar attended by about 30 members of our Bioethics Committee, requesting suggestions and comments. There was a suggestion that my refusal of endotracheal intubation might be too restrictive under certain circumstances. Unconvinced, I did not wish to modify my document.

The comments on my recitation of my personal advance directive were generally favorable. I sensed that there were some members present who wished they had done something similar (if not as specific) but had deferred the writing or the discussion because it was very uncomfortable to do so. Some weeks later I had to smile when one member who had been present referred to the session in which “he had the courage to discuss his own demise.” No such thing. It required no courage, just a common sense expression of my preferences.

In both the discussion with my family and the committee members at the seminar, I stressed my fear that my wishes would not be followed while I was powerless to countermand the disregard of those requests. I have participated in enough health care discussions to know that feelings of fear, separation, guilt, or uncertainty generated by making decisions about the end of my life might cause a surrogate to negate my directives. That is not only a possibility, but too often a reality. I picture being trapped in a “minimally conscious state,” which is more akin to the persistent vegetative state than it is to consciousness. Some grieving relative might then imagine that I muttered “Mozart,” managed a faint smile, and weakly squeezed a hand, precipitating a demand for the cascade of futile diagnostic and therapeutic interventions that I neither need nor want.

At the end of both discussions I was hopeful that I had conveyed an attitude, stressed the way I would prefer to live, and even more importantly how I would prefer to die.

At age 70, I had not even seriously discussed this topic. At age 80, I wrote it out but did not discuss the details with my family. At age 90, I have finally come of age and done both. It was long overdue.

Reference

1. Gawande, A. 2010. Letting go: what should medicine do when it can’t save your life? The New Yorker, August.