Chapter 17: Wait, I'm Gonna Die?!

I woke up this morning thinking about life and death, about how interconnected they are. One of the things I have found most interesting and surprising since being diagnosed with cancer is how absolutely uncomfortable some people are talking about death. I can tell everyone is curious about my prognosis, about how many years I might have left, etc, but when I tell them the responses vary widely from acceptance to denial. Also, I’m only guessing when I tell them. I have no idea how long I have left to live. Neither do you.

What I have noticed is that my physician friends react very calmly to discussions on death, even when we are talking about our own inevitable deaths. My non-medical friends, however, seem unsure if they want to talk about death at all.

They shift uncomfortably in their seats, look down at the floor, give me a hug. I find this fascinating and eye-opening.

As physicians, we deal with death on a routine basis. We are trained to discuss death, see death, and think about death. I would say as a total generalization without any evidence to back it up, that physicians (at least internal medicine physicians such as myself) are very comfortable talking and thinking about death. I would also say that physicians understand the inevitability of death (including their own) and are not afraid of thinking about this fact.

If you have been reading my blog posts, you will not be surprised to hear that I have a quote from "An Open Heart" by His Holiness the Dalai Lama to share with you all today:

“We must first recognize that we shall all inevitably die. We are born with the seed of our own death. From the moment of birth, we are approaching this inevitable demise. Then we must also contemplate that the time of our death is uncertain. Death does not wait for us to tidy up our lives. It strikes unannounced.”

Wow. This guy is so wise. Everything he says just speaks right to my soul.

I’ve been thinking a lot about the inevitability of death. When I read this quote, I think about how it relates to my own life and death, but I also think about it from the perspective of a physician.

“From the moment of birth, we are approaching this inevitable demise.” What then, is the role of a physician? If death is inevitable, a physician’s job is not to “prevent death.” This is impossible. In my mind, a physician’s primary role is to do one and/or both of the following:

A. Extend the quantity of life

B. Improve the quality of life

C. Both

Option C is obviously ideal. However, often as physicians, we are faced with the seemingly impossible decision of performing option A at the cost of option B, or vice versa. As a physician, I have been involved in numerous conversations with patients about which option they prefer. The answers vary widely. The conversation I have with my patients involves some of the following:

If you are unable to speak for yourself and too ill to make your own healthcare decisions, what would you want your family members/friends and doctors to know?

Would you want treatments such as cardiac resuscitation, mechanical ventilation, powerful medications, invasive procedures, artificial nutrition, etc to keep your body alive for as many hours/days/years as possible?

Or, would you want me to focus on your comfort? Does quality of your days matter more, less, or the same as quantity of your days?

For some people, the choice is obvious. If you are reading this and thinking: obviously I would choose A or obviously I would choose B, that is very good information to know about yourself. It is even better information to share with your family and to write down in an advanced care plan while you are healthy and able to do so.

The day before I had brain surgery, I asked my medical team to bring me two forms for my own advanced care planning: A healthcare directive and a power of attorney form. As a physician having discussed these forms with my patients a thousand times, I knew there was no way I was going under the knife without these forms filled out. If I had a stroke, a bleed, a bad outcome and became permanently unconscious then under no uncertain terms would I want to be kept alive with machines. I love my brain. I love to think, I love to write, I love to work. If my brain stops working, for me, this is the same as death.

Filling out a healthcare directive as a 29-year-old previously very healthy person was an odd experience to say the least. Throughout this experience, however, I kept thinking how grateful I was to know about these forms. I was so grateful to know these forms existed, are important, are respected amongst medical providers, and allow me to make my wishes clear while I still can. I felt very fortunate to have medical training in this situation. I was able to fill out these forms with a clear mind, tell my family about my wishes, and go into surgery knowing that if the outcome was not ideal at least my wishes would be respected.

My plea to you is to discuss advanced care planning with your own primary care provider. Now. Today. Do it. Do it for me. Do not wait to do this until you are sitting in a hospital bed unable to do so.

If you live in Minnesota, here is a link which includes the “Honoring Choices Minnesota Health Care Directive.” Read it, think about it, start to fill it out. These forms are slightly different in every state, so talk with your primary care provider to make sure you have the correct form.

http://www.mnaging.net/en/Advisor/HealthCareDirective.aspx

Summary of today’s rant: Be your own advocate, in life and in death.

Fondly,

Courtney B, MD

© CB2020