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What Will the End of Life Look Like?

Facing difficult, but important questions with my grandmother

By Manisha Juthani-Mehta, MD

My 89-year-old grandmother — sharp as a tack, but frail as can be — was coming to stay with me for three weeks while my parents were on vacation. Although she has only a few medical problems, osteoporosis has devastated her body. A fall could precipitate a rapid decline.
In anticipation of her arrival, I asked my mom what advanced directives my grandmother had, and learned she had a basic living will, but not much else. I started asking more questions. If she falls, does she want to go to the hospital? If she needs intensive care unit level care, would she want a breathing tube?
For many Americans, facing the realities of what their death may look like is too difficult to conceptualize. Denial and deferral are much easier. But in order to live the life you want and die on your own terms, you must address these issues while you can.

(MORE: Talking With Loved Ones About How They Want to Die)
My grandmother was born in India and studied only up to the eighth-grade level, but speaks English perfectly. She married at 19, had my mom at 20 and was a pregnant widow by 26.

Start Discussions Now
She devoted her life to religion and raising her two girls, her grandchildren and her great-grandchildren. She has worn white, the color of a grieving widow, since she lost her husband. Minimalism and being one with God have been the driving principles of her life. When I started asking her my questions about how she might want to handle an acute event, I assumed I already knew the answers.
My first question: If you were to fall, do you want to go to the hospital? She replied, “If I fall and break a bone, do I have any other choice?”

What about artificial hydration or food? Her answer: “No, I don’t want any of those things.”

If your heart stops, do you want someone to compress your chest to start it up again? “No.”

What about a breathing tube? “I don’t know the answer to all these things. We have so many doctors in the family. You all know best.”
Herein lies the dilemma for many family members who want to talk with a frail, elderly loved one about end-of-life care and dying.

Missouri Case Brought Issues to Light
The case of Nancy Cruzan, a 33-year-old woman from Missouri in a vegetative state for eight years following a car crash who eventually was allowed to die after removal of a feeding tube in 1990, highlighted the need for advanced directives.

More living wills, the primary form of an advanced directive, have been completed over the years as awareness about their need has grown.


(MORE: End-of-Life Planning: Starting the Conversation)
Yet, less than a third of Americans have a living will, according to a 2013 study. And often the goal is just to complete the form and fill in the blanks. The meaning of the statements in the document is often vague, generic and unclear. Worst yet, family members and doctors often don’t even know the living wills exist.
Some people have tried to be more explicit in documenting their wishes. Many patients, particularly those with terminal illnesses, have completed “Do Not Resuscitate” orders that are valid even outside the hospital. Others have tried to stipulate very clearly in their directives that they do not want food or water should they have advanced Alzheimer’s disease and can’t feed themselves.
In recent years, a POLST (Physician Orders for Life Sustaining Treatment) form has been developed. Many states have approved it as a legal document for patients where death within a year might be anticipated. This form tries to provide further guidance, giving patients the ability to have physicians know what types of treatments they would, and would not, want. But this document is only designed for that subset.
National Healthcare Decisions Day

As the saying goes, there are only two things in life that are certain: death and taxes. So there's a reason the day after Tax Day, April 16, was National Healthcare Decisions Day. No one likes to pay taxes, but we all know that we have to do it. Likewise, if you have not done so already, take a moment to think about all those decisions you could make for yourself and not leave for your loved ones, and perhaps consider completing a POLST.

(MORE: What Do I Do With Mom's Ashes?)
If you filed for an extension to submit your tax return, take this opportunity to use that same extension to address your advanced directives.

Although none of these documents are perfect, they are starting conversations that many want to avoid. There are also tools and resources to help facilitate the path. Gathering friends and family to talk about death over dinner is one way to start the dialogue. Others have gathered all their advanced directive documents and placed them in the freezer — a safe, fireproof, and easy-to-find place. Include a chocolate bar in the bag so your loved one can be sustained while dealing with your loss.
When you think having these conversations is too painful, imagine the pain of being the family members of Nancy Cruzan. As difficult as it may be, creating the outline of how to deal with your own death will make your end more likely to be peaceful for both you and your family members.

Ensuring Dignity
As the three weeks that my grandmother spent with me came to an end, I felt grateful to continue to have this strong and intelligent woman in my life. I am equally grateful that she managed to climb the steps in my house by herself and without incident.
But as she told me, “We all are going to die.” Through our conversations, it was clear to me that she doesn’t want anyone pounding on her chest. Nor does she want to be sustained artificially. We have now gone through the task of completing a POLST for her. I completed as much as I could with her and had my mom and her physician make it an official document.
Although we cannot anticipate every potential decision we may be faced with, I am now clearer on exactly what she would like her end to look like — whenever it comes. I want to make sure that my grandmother is provided the dignity she deserves for the life she has lived.

Manisha Juthani-Mehta, MD Manisha Juthani-Mehta is an associate professor and Infectious Diseases Fellowship Program Director in the Section of Infectious Diseases at Yale School of Medicine. Her federally funded research has focused on pneumonia and urinary tract infections in nursing home residents. She is an OpEd Project Public Voices Fellow. Read More
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