Whose Life Is It Anyway?

Each physician went into his specialty for a reason.  Some of us, like me as an obstetrician, want to see the beginning of life while others do not mind dealing with the end of life.  I knew I didn’t want to be a pediatrician shortly after my third year rotation in the Children’s hospital in Columbus, Ohio.  I was assigned to help take care of a 14 year-old boy named Troy Y., who was dying of Cystic Fibrosis.  Troy, his mother and I became friends shortly after I was assigned to his case.  He was a highly intelligent teenager who was wise beyond his years, knowing he was terminal.  He had the typical look of a patient at the end stage of their illnesses, pale and cachectic, whose haunting eyes appeared too big for his small face.  He was philosophical about his life and soon to be death, telling me all the things he had tried to do during his healthy days.  I learned so much from Troy, to live fully while you can, for whatever time you are given on this earth.  You should dance with the beats of life, knowing the music will not last.

The last week of Troy’s life, however, wasn’t so peaceful.  His attitude changed, as breathing became more difficult for him.  All the treatments didn’t seem to give him comfort.  It was difficult for me to watch him laboring through his breaths.  He cried more and became more quiet.  He mostly looked at me and his mother, nodding or shaking his head to my questions.  I ran out of things to ask him.  I didn’t feel right asking if he felt better or worse, as I knew the answer.  My visits became shorter, as my progress notes did, although I would sneak in at the end of each day to make sure he was still there.  During one of my visits, he was screaming in frustration at his mom and me. 

“Why me? Why do I have to die so young?” 

His mother looked away, wiping her tears.  I froze in silence and couldn’t keep my tears from coming, as I still can’t after all these years, thinking about that moment.  I asked myself the same question that day, why him and not his mother or sister or father? Why him and not Hitler, Baby Doc or Idi Amin at 14?  Somehow the term “God’s will” never resonates with me.  How do we know it’s God’s will? 

I was invited but couldn’t bring myself to go to Troy’s funeral.  A few days later, his mother looked for me on the medical ward to give me a pamphlet of his funeral.  I still have Troy’s funeral pamphlet in my box of memories from my medical school years.  She gave me a big hug and told me her family understood why I didn’t attend the funeral.  I felt too much for Troy, and too much for the family he left behind. 

Death is inevitable.  If we were to be immortal, however, life would be less meaningful.  Death is a necessity for us to enjoy life.  What’s the fun of bungee jumping or hang gliding from a cliff if you know you will never die?  The element of danger makes those sports more intriguing, as you know you might not survive the jump, however low risk the sport might be.  Richard Branson, the CEO of Virgin Atlantic, plans to send wealthy travelers to space for a price.  I am sure he will learn that not all mega rich people who can easily afford this new travel destination will take his offer.  If they are guaranteed immortality, they might be more willing to go see how outer space looks.

If you were to give a choice to “design” your death, knowing how none of us can escape death, as it is a part of our life, how would you like to die? A quick death as in a heart attack, or a prolonged painful death as in a patient with terminal ovarian or lung cancer?   If you are a physician or a medical student working in an oncology ward, taking care of terminally ill patients, I think you would agree how easy the response to this question would be.  

I remember watching Dr. Jack Kevorkian’s interview by Anderson Cooper on CNN in 2010.  As many of you recall, Dr. Kevorkian was a pathologist from Michigan who championed the “right to die” for terminally ill patients.  He used to quote “Dying is not a crime.”  He was a controversial figure, as some claimed many of the 130 patients he assisted to die were not terminal at all.  Some might have been depressed, others were in chronic pain.  In 1999, Dr. Kevorkian was convicted and went to jail for 8 years for directly assisting Thomas Youk, a 52 year old man with terminal ALS (Lou Gehrig’s disease), to die.  

When Anderson Cooper asked Dr. Kevorkian if he thought doctors play God all the time, Kevorkian responded without hesitation:

“Of course, anytime you are interfering with a natural process, you are playing God.”

He went on to give an example of a diabetic with a gangrenous leg who needs an amputation.  Isn’t the surgeon “playing” God by interfering with this natural process of a leg gone bad from a disease?  I think I understood what he meant.  How do we know when God’s will starts or ends? 

When we decide to allow our loved one to be taken off her artificial ventilation and have her peaceful and inevitable death, as I painfully had to do for my mother after her fall in the hospital, are we playing God?  How do we know if God was guiding us to this final act?  What about an elderly patient in the same Neuro-Intensive Care Unit (NICU) who had been on the artificial ventilation system for more than 2 months without any more visitors, since all her relatives had to go back to their routine life?  Did God want her to be in that irreversible coma for all that time instead of going to the “better life” forever after?  Was it right or wrong that we humans allow her to live artificially without a meaningful existence?  How do we define a “meaningful” existence?  Do you want to decide what YOUR meaningful existence should be, in your lucid moments and not under a heavy morphine drip, or do you want someone else, especially strangers, to decide your fate?

If you had met Mrs B., whom I took care of as a third year resident, who died of ovarian cancer, you would have had an easier time answering the above questions.  I also befriended Mrs B. during this required Gynecology-Oncology rotation.  Maybe I shouldn’t have befriended so many terminally ill patients, as their deaths have remained sadly in my mind for years and years.

Mrs B.  loved me as a medical student.  She thought I was so funny I made her laugh through her pain.  She was amused by the fact that I loved the Maryland blue crabs but couldn’t afford to eat crab cakes, as they were too expensive for my meager resident salary.  My mother was a fabulous cook but only with Vietnamese food.  She tried to make crab cakes, but they always fell apart, I told Mrs B.  She was laughing and telling me how, after she got out of the hospital, she would invite me and my mother over for crab cakes.  She made the best ones, she told me.

Mrs. B. never got out of the hospital.  She was in so much pain at the end that the morphine dose became heavier, helping her drift into an almost constant sleep throughout the day.  During some rare lucid moments, she complained how she wished it could all end.  She was ready to go and was tired of her prolonged pain.

The busy night I was called by her nurse to come and pronounce her dead, I was dragging my feet.  I knew her too well, my friend Mrs. B., who never had the opportunity to make me her best crab cakes.  I stood by the window of her room, where she had stayed for quite a long time.  Her room looked down to a beautiful courtyard, and above, in the sky, the moon was full.  The shadow of objects on the ground against the bright sky with a full moon was striking.  I kept looking up at the moon and looking at Mrs. B., who was so peaceful in death.  I was so glad and relieved for her.  Where are you now, Mrs. B? I kept asking myself.  Goodnight Mrs. B., I am so relieved for you, I was whispering to her.  I was relieved that the nurses left me alone for a while, knowing how close I was to her, to let me pay my respects to my friend Mrs. B. 

If you were to be Mrs. B’s family member, how would you have wished for her to be, during her most painful moments?  

I learned about Brittany Maynard’s case when I was waiting for my haircut.  Her beautiful face and the caption on People’s magazine got my attention.  I read in horror and sadness of how her once beautiful life had turned, and what a remarkable person she was.  I looked at a photo of Brittany and her husband Dan in Patagonia, Argentina, in front of a glacier.  It was in the same spot that I, David and Sandy had our photo taken in 2008.  Brittany was strikingly beautiful in every photo especially the day of her college graduation.  She was athletic, worldly, compassionate, intelligent, all the traits a parent like me would wish for in our child.  She did all the “right” things we want a good human to do, to care for herself but to also care deeply for the world beyond herself.  I was stunned at the development of the story of how she found she had terminal brain cancer, and how she will end it all in her own way.  She moved to Oregon, one of the five states where assisted suicide is legal, to accomplish her last wish. 

In her lucid moments, Brittany chose how she died.  She was in pain and was tired of having daily seizures.  Maybe someday medicine will be even more advanced and her cancer will have a cure.  For now, she was terminal.  She could no longer live the full life she wanted to live.  She had lost her “essence.”  She was physically suffering with no good end in sight.  She wouldn’t have escaped the consequences of her brain cancer.  It would have been a matter of time before she died, with daily pain and headaches, with her husband and parents witnessing and suffering emotionally with her.  She did not want any of that.  Would you have wanted otherwise for yourself?

There are only five states where assisted suicide is legal: Vermont, Montana, Oregon, Washington, and New Mexico.  These assisted suicides are reserved for proven terminally ill patients.  They are not reserved for those who are depressed, paranoid or hypochondriacal, as those who criticized Dr. Kevorkian claimed that some of his 130 patients were.  Kevorkian’s lawyer Geoffrey Fieger stated that he believed one of the physicians’ roles is to “alleviate” their patients’ suffering, even if that meant physicians could assist their patients to die. The term “suffering” is relative and subjective, but pain and suffering in a terminal illness, in my opinion, should be easier for the public to understand.  Many times, an oncologist can underestimate how long his “terminal” patient would last with her cancer.  More available treatment modalities, however, especially with a second or third opinion from other oncologists if needed, often are not in dispute.  Oncologists even know how their patients will die with their particular cancer.  Most patients suffer tremendous physical pain when the cancer is widely spread.

I can’t answer for you, but for me, I do not want to be in prolonged pain when in a terminal stage of illness.  I wouldn’t want it for my loved ones either.  At some point in a terminally ill patient, the body is but a “burden of a shell.”  If we truly believe in a wonderful afterlife, as we believe our God has promised, why prolong someone’s suffering at the end, if the person chooses for it to end sooner?

You probably know by now how I feel about Brittany Maynard’s case.  Many physicians probably know internally what they would choose if they were in her situation. She was terminal and suffering.  It was not like a depressed patient who might have gotten better with medications and psychotherapy.  Interestingly, a survey in the New England Journal of Medicine (NEJM) in September, 2013 reported that most physicians are opposed to physician-assisted suicide.  The survey received 5205 responses from physicians, of which 65% were opposed to permitting physician-assisted suicide.  The general public felt the same way at 67%.  A quote from the NEJM after this survey was published:

“More than 200 comments were posted. Readers opposed to physician-assisted suicide questioned whether suicide was a civil right or a human right, expressed the belief that assisting suicide violated a physician’s oath to do no harm, and worried about a slippery slope in which physician-assisted suicide could eventually lead to euthanasia. Comments in favor of physician-assisted suicide highlighted the importance of honoring patients’ autonomy and noted that if physicians assist at birth, they should also have a role in assisting at death. A large number of commentators on both sides of the divide agreed on the importance of palliative care, including hospice, for helping terminally ill patients manage their symptoms, both physical and psychological.” 

I wonder how many of these physicians have changed their mind after Brittany Maynard made the debate so public and in such an articulate way?  How do we physicians, in modern society, define the Hippocratic Oath of “First do no harm”?  Isn’t denying someone’s desire to end her pain and suffering at the end of a terminal illness DOING HARM?  How have so many of us been able to euthanize our dying pets in the name of love without society deeming that an immoral act?  Maybe somebody needs to explain the difference to me, how God rules the kingdom of men but not all the other animals?  “Palliative care,” in case you wonder, often does not work at the end.  It’s comforting, however, to know how the physicians on both sides of the debate believe in palliative care for terminally ill patients.  It is never an easy task to see someone suffer. 

Should Brittany have been given the right to die, given her terminal condition and all the horrendous side effects of her illness, and that her decision was made during her lucid moments?  My answer is very clear, in a form of a question: 

Whose life is it, anyway?  Who are we to tell her she needed to suffer longer? Could we have promised her a better tomorrow?