When I was 16 my dad had a heart attack. I still recall studying in my room when my mom came in to tell me he wasn’t feeling well. At the time, I was a volunteer in the Emergency Room at our local hospital, located in the tiny Pacific Island of Guam. I recall asking him what he was experiencing: elephant sitting on his chest (yes), shortness of breath (yes), pain down his arm (yes)—it was my first diagnosis, and unfortunately, I had diagnosed an acute myocardial infarction on my own father.
As I sped toward the hospital, my dad lost consciousness. I watched helplessly as they wheeled him into the code room, watched the door close amid a flurry of controlled chaos. During those tense hours in the hallway, time stopped for my mom and me. The only thought I had was “But...” As he was fighting for his life that night, I thought about all the things we had not said, things we had not done. I feared that I would lose him before I graduated high school.
Fortunately, he survived that night and recovered without sequela. Over the course of decades, his heart disease became a chronic problem, devolving into a cardiomyopathy. Still, he lived well, traveled frequently, and golfed 18 holes with regularity. That is, until two years ago.
I was called home then—to Guam. He lay in an ICU on a morphine drip. The doctors knew there were no treatment options left and they had feared he would not survive this event. My father had not heard them—he had asked for me. Armed with my medical degree, I stepped in to the role of patient advocate. Knowing my dad was terminal, I was his “son the doctor” and worked with his medical team and my family to figure out what to do next. We discussed hospice then, and it was left to me to tell him he was dying.
Before I left Guam, I saw him discharged home and set up with hospice. We spent time together, discussed the things that had made him happy and the things that he would miss. I got the chance to tell him how much I loved him. He told me he was proud of me and the family I had.
Four weeks later, my phone rang while I was driving home from work.
“Don, there’s something wrong with your dad.” It was my mom. Even from so far away I could sense her panic.
“What’s wrong,” I asked, aware that my heart had started to thump faster and harder.
“He’s not moving. He won't wake up.” She said.
“Can someone feel his chest? See if you can detect his heartbeat. If not, feel his neck for his pulse.”
After some shuffling, my sister retrieved the phone. “There’s no pulse.”
“Can someone grab a mirror and place it under his nose? Check to see if he’s breathing.”
A pause followed, and then “No, I don’t think he’s breathing.”
“Get a flashlight—check to see if his pupils respond to light.”
A longer pause as my family tried to locate a flashlight, and then, “No, there’s no reaction.”
“Let me speak to mom, then.”
“Hello,” my mom said.
“Mom, dad’s gone. He’s dead.” And just like that, I had pronounced my own father over the telephone.
These thoughts came to me after seeing the movie, Extremely Loud and Incredibly Close. It’s a movie set after 9/11 and tells the stories of death—one violent and immediate; the other protracted as a result of illness.
It was, in a way, my own experience with my dad. In the one, I was young and shocked to learn I could lose my dad so suddenly, with so much left unsaid. In the other, I had become a man in the presence of my father, developed a friendship as equals, and ultimately, bore witness as my dad lived out the last weeks of his life, and, most importantly, experienced closure before he passed on. In the end, I believe my dad experienced what I think people (and my patients) deserve when that time arrives—a “good death.”
If there is anything that oncology makes us realize, it is the gift of time. Although cancer cuts life short for the majority, it usually will provide for time at the end of life. As oncologists, we should not rob our patients of the time at the end of life, the opportunity for closure, and the chance to "say what needs to be said". It is an opportunity not afforded to many others, and it was probably one of the most important lessons my dad taught me.
As I sped toward the hospital, my dad lost consciousness. I watched helplessly as they wheeled him into the code room, watched the door close amid a flurry of controlled chaos. During those tense hours in the hallway, time stopped for my mom and me. The only thought I had was “But...” As he was fighting for his life that night, I thought about all the things we had not said, things we had not done. I feared that I would lose him before I graduated high school.
Fortunately, he survived that night and recovered without sequela. Over the course of decades, his heart disease became a chronic problem, devolving into a cardiomyopathy. Still, he lived well, traveled frequently, and golfed 18 holes with regularity. That is, until two years ago.
I was called home then—to Guam. He lay in an ICU on a morphine drip. The doctors knew there were no treatment options left and they had feared he would not survive this event. My father had not heard them—he had asked for me. Armed with my medical degree, I stepped in to the role of patient advocate. Knowing my dad was terminal, I was his “son the doctor” and worked with his medical team and my family to figure out what to do next. We discussed hospice then, and it was left to me to tell him he was dying.
Before I left Guam, I saw him discharged home and set up with hospice. We spent time together, discussed the things that had made him happy and the things that he would miss. I got the chance to tell him how much I loved him. He told me he was proud of me and the family I had.
Four weeks later, my phone rang while I was driving home from work.
“Don, there’s something wrong with your dad.” It was my mom. Even from so far away I could sense her panic.
“What’s wrong,” I asked, aware that my heart had started to thump faster and harder.
“He’s not moving. He won't wake up.” She said.
“Can someone feel his chest? See if you can detect his heartbeat. If not, feel his neck for his pulse.”
After some shuffling, my sister retrieved the phone. “There’s no pulse.”
“Can someone grab a mirror and place it under his nose? Check to see if he’s breathing.”
A pause followed, and then “No, I don’t think he’s breathing.”
“Get a flashlight—check to see if his pupils respond to light.”
A longer pause as my family tried to locate a flashlight, and then, “No, there’s no reaction.”
“Let me speak to mom, then.”
“Hello,” my mom said.
“Mom, dad’s gone. He’s dead.” And just like that, I had pronounced my own father over the telephone.
These thoughts came to me after seeing the movie, Extremely Loud and Incredibly Close. It’s a movie set after 9/11 and tells the stories of death—one violent and immediate; the other protracted as a result of illness.
It was, in a way, my own experience with my dad. In the one, I was young and shocked to learn I could lose my dad so suddenly, with so much left unsaid. In the other, I had become a man in the presence of my father, developed a friendship as equals, and ultimately, bore witness as my dad lived out the last weeks of his life, and, most importantly, experienced closure before he passed on. In the end, I believe my dad experienced what I think people (and my patients) deserve when that time arrives—a “good death.”
If there is anything that oncology makes us realize, it is the gift of time. Although cancer cuts life short for the majority, it usually will provide for time at the end of life. As oncologists, we should not rob our patients of the time at the end of life, the opportunity for closure, and the chance to "say what needs to be said". It is an opportunity not afforded to many others, and it was probably one of the most important lessons my dad taught me.
Disclaimer:
The ideas and opinions expressed on the ASCO Connection Blogs do not necessarily reflect those of ASCO. None of the information posted on ASCOconnection.org is intended as medical, legal, or business advice, or advice about reimbursement for health care services. The mention of any product, service, company, therapy or physician practice on ASCOconnection.org does not constitute an endorsement of any kind by ASCO. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of the material contained in, posted on, or linked to this site, or any errors or omissions.
Comments
Lucio Nobile, MD
Oct, 28 2012 8:13 PM
yes we need to enhance the insight of our patient and their family in their own situation and destiny.
Unfortunately the pressure, in many cancer center is still tward "productiovity", which means more chemotherapy up to the end. We operate in a big area of ambiguity.
Ambuguity is a set up for failure.
Lucio Nobile
Don S. Dizon, MD, FACP
Oct, 29 2012 8:36 AM
Dear Lucio: Thanks for your comment. There are no shortage of reasons why our patients continue treatment up to the end of their lives. Some of it comes from us as providers, some from our patients. It is such a sensitive and emotional time for all of us, isn't it.
We must continue to work towards a better (and more individualized) approach to prognosis and options. I think of no better forum for it than ASCO and ASCO connection. Certainly, participating in a dialogue such as this is one way out of ambiguity.
Looking forward to hearing from you. DSD
Lucio Nobile, MD
Nov, 10 2012 12:12 PM
Dear Don,
I have to spend some time in meditating about the meaning of "the gift of time". Regretfully, I do not see any input or comment by other ASCO members to your inspiring observation and the experience you are kindly sharing with us.
Discovering "the gift of time" has been the powerful source of inspiration for the most beautiful pages of poetic prose written in the modern literature. As Marcel Proust described "In Search of Lost Time" the illness and the demise of his grandmother, we see how the pain from the separation of the loved one relate to our memory and our emotion to the time past. The thousand of pages written by the Author are all revolving around this notion and source of inspiration. In antithesis to his father, the pragmatic Professor Adrien Proust epidemiologist of the University of Paris, his brother general Surgeon and the philosophy of his Cousin Henri Bergson; Marcel Proust devoted his life to research the depth of the human soul and the link between poetry, art, memory and time.
For us oncologist and for our patients the "gift of time" should be a source of inspiration to redefine our profession and our mentorship role to junior colleagues and medical students.
LN
Don S. Dizon, MD, FACP
Nov, 11 2012 8:13 AM
Dear Lucio,
I appreaciate your post greatly and the reminder of how powerful the impact of illness, loss, and separation are on those of us who are "still standing", despite the time that passes. In medicine we must always remember the arts not only inspire but inform the practice of medicine. At the University of Rochester School of Medicine I was lucky enough to have required didactics in Medicine and The Arts and wonderful instructors who stay with me today- like, Jane Greenlaw and Joseph Cady. This continued well into fellowship, thanks to Teresa Gilewski at Memorial Sloan-Kettering Cancer Center and the Art of Medicine lecture series.
In short, I completely agree with you. All of us in Oncology- whether tenured professor or fellow beginning his or her journey should have access to literary and living resources to ensure that we are delivering the best medical and emotional care of our patients.
Best always, DSD