End of Life: Time or Quality?

The evening before the blizzard, my husband and I drove after work to Johns Hopkins Hospital in Baltimore to see a friend who has been hospitalized for a week for her cancer treatment.  She was diagnosed with both thyroid and esophageal cancer six months ago.  She underwent chemotherapy and radiation.  The tumors have made it nearly impossible for her to swallow solid food.  For months, she has been able to drink only liquids, or mashed up soft ingredients in soup.  The treatment team finally decided it was time for her to have a feeding tube because of her more than forty pound weight loss.

Driving to Baltimore on a winter evening brought back some unpleasant memories.  During the winter of 2000, we were back and forth regularly to Johns Hopkins, where our son, three years old at the time, was under treatment for neuroblastoma, an agressive childhood cancer.  The ICC did not exist back then, so we could only use I-95N to get to Baltimore.  We bought a used SUV shortly after he got sick, to make sure we could get to JHH in heavy snow.  Every time he had a fever, one of us would drive him to the hospital (while the other one worked) with my mother sitting with him in the back seat.

Johns Hopkins has since became an enormous compound.  The campus we visited a few days ago wasn’t even there in 2000.  This Cardiovascular and Critical Care Tower was built in 2007, with a huge sum of money donated, an undisclosed amount, by Sheikh Khalifa bin Zayed Al Nahyan, the United Arab Emirates ruler.  His enormous photo can be seen in the foyer of the building.  Sheikh Khalifa gave money to several well known US hospitals, such as $150 million to MD Anderson Cancer Center in Houston, and another $150 million to Children’s National Medical Center in Washington.   When people are extremely wealthy, one way to stay immortal symbolically is to have one’s name displayed on buildings somewhere in the world.  It’s a good way for Khalifa to be remembered, however, as someone whose money makes a positive affect on patients he didn’t even know.

Our neighbor looked very fatigued that night.  She has gone through too much for someone who had been healthy all her life. Too many diagnostic procedures, too many doctor visits, too many new strangers in her life, with teams and teams of specialists who are probably among the best and busiest doctors in the country.  Johns Hopkins, after all, has been ranked repeatedly as the best hospital in the U.S. These specialists are not only well trained, with most having PhDs in sciences on top of their medical degrees from elite universities, but they have seen the worse of the worse patients with rare illnesses, the so called “zebras” in medicine.

That was why we chose JHH after our son was diagnosed with neuroblastoma.  We wanted the doctors who had treated “everything.”   Since then, studies have shown that surgeons who have a heavier case load in certain difficult procedures, have a much lower rate of complications.  There’s a call for surgeons to reveal their level of expertise with certain invasive procedures, including how many cases they have successfully performed, so patients can choose whom they should go to. When it’s a situation of life and death, we should be careful who our chosen physicians are. 

My neighbor’s tumor is inoperable.  The treatment teams, from different specialties, will decide what to do for her.  Will there be realistic hope?  Should seriously ill patients hang on to a grain of hope?  How far should they go for the quest of living a longer life, even with a lower quality of life?

Physicians and patients act differently when facing death.  Recent studies from the Center of Surgery and Public health at Brigham and Women’s Hospital from Boston, and New York University School of Medicine in New York City show how physicians, when facing serious illnesses, are less likely to seek more aggressive care as compared with the general population.  They are less likely to die in the hospital or other facilities of care, and less likely to be admitted to Intensive Care Units. 

Earlier this month, I read a Washington Post book review on a newly released book “When Breath Becomes Air,”  Dr. Paul Kalanithi‘s memoir.  He was a Stanford neurosurgery chief resident who died of lung cancer at 37 years old.  He was a brilliant man with college and advanced degrees in Biology, English Literature, History and Philosophy of Medicine from Stanford and Cambridge, a medical degree with honors from Yale, and was in his last year of neurosurgery training at Stanford when he was diagnosed with metastatic lung cancer.  He was not a smoker.

Dr. Kalanithi wrote several essays after his diagnosis and during his treatment, about the initial stage of facing death, as it came so abruptly and surprisingly, after so many years of him preparing for a “good life.”  One essay, Before I Go, was very touching about how he had come to understand the meaning of his life by understanding his illness.  This essay included a moving video clip from Stanford, with Kalanithi explaining the transition from being a normal, soon to be successful neurosurgeon to a gravely ill patient who now was ready to leave behind a supposed to be beautiful life.

Dr. Kalanithi’s unfinished memoir was finished and published by his wife Dr. Lucy Kalanithi, an internist at Stanford.  Lucy is an impressive writer like her husband, not only because she writes so eloquently, but because she also writes with such raw honesty.  It would move anyone who has dealt with grief over a loved one’s death.  Of all things in life, death is the most consistent, yet the most difficult to accept.

How can all the complexities of one’s life end abruptly in a “simple” event of death?  All the years Kalanithi spent preparing for a future that never will be, an absurdity that Albert Camus had often contemplated, how people are not happy with death.  In “The Myth of Sisyphus,” Camus explained the absurdity of how we live a bulk of our life building on the hopes for tomorrow, knowing that tomorrow brings us closer to death.  We live, however, as if we did not know about the certainty of death. The sudden disruption of a normal life by serious illness, leading to the shock of facing death, makes most of us fight back and fight hard to extend whatever time we have left.  Living one day at a time does not give us peace, as we continue to wonder how much time we have left and what we should do with that time.  Kalanithi summed up this feeling poignantly: 

“The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve got to find what matters most to you.”

Most physicians are aware of the suffering, often resulting from the intense treatments required for serious illnesses.  They are also aware that this suffering doesn’t necessarily lead to a cure for a terminal condition or even a brief extension of life.  They choose, therefore, to live out their days with a lucid mind and clear vision of what they want to accomplish before they die.

It is often difficult for physicians to “give up” on a patient’s treatment.  Many feel they have failed their patients or themselves, or find it’s difficult to announce the end.  The indecisiveness of the treatment team can lead to many more days of intense therapies which can take the patients away from their homes and families, rendering them incapable of living meaningful moments because of the side effects they suffer.  

Maybe we physicians should walk our patients through the journey of their illness, taken the same path we would walk if we faced the same illness.  Maybe we should counsel patients carefully about the consequences of intensive treatments.   Nobody can predict with precision how long each patient will have left, but at least the quality of life could be better known.  With realistic clarifications of their conditions, many terminal patients might choose not to suffer during whatever time they have left, but to finish matters important to them, with a lucid mind and some remaining strength.  As Dr. Atul Gawande, in “ Being Mortal,” stated: 

“If to be human is to be limited, then the role of caring professions and institutions—from surgeons to nursing homes—ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.”

Our job is not to offer patients false hope or more suffering, but to remind them to celebrate days they have left, when we know the limitations brought on by their condition and treatment.  Heal them, as we would like to heal ourselves.

Ironically, as I was about to post this blog, I heard Dr. B.J. Miller on NPR’s TED Hour on the subject of what really matters at the end of life. Dr. Miller, a 1993 Princeton graduate, gave a powerful TED talk on this subject, using his own life experience, after losing both his lower limbs and left arm in an accident during his sophomore year in college .  He eventually went to medical school and became a palliative care physician.  You should take time to listen to his moving talk.  This NPR’s TED Hour also featured other powerful speakers on the subject of death and dying who are worth listening to.