Tuesday, September 28, 2004

Facing Your Own Death

It is hard not to think about death in my business. Often I have pondered on my porch, Poe-like, how I would cope with the knowledge that my death was scheduled to occur in the near future. Would I abandon my patients immediately, and retire? Would I follow the Kubler-Ross steps in predictable fashion - or as an iconoclast, first accepting the inevitable, then becoming irreconcilably angry? How could I, or anyone, continue to interact with friends and family?

We are all so proud of our enlightenment and insight into human life, a product of modern collegiate and post-graduate education - but human death? Most of us cannot fathom the concept of our death. Our ordinarily brilliant minds clang with terror when considering the image of it. Such fear I believe is unhealthy because it robs us of the power of understanding - by that I mean a mature contemplation of death that can lead to proper planning for the future, or a deeper appreciation of the blessings surrounding us - in short, a richer life.

Fear of dying therefore seems to be hidden inside many of us - myself included. My career as a cancer specialist would seem to only increase my angst about death, since I see it every day, yet it was actually relieved when I met a patient who showed what it means to face the end with courage.

The last days of this patient, whom I shall call Mark, are worth sharing with anyone who is searching for a way to cope with a life-limiting illness. Mark was diagnosed in his thirties with a rare type of pancreatic cancer that took his life within six years. We initially thought his tumor could be resected, but at the time of surgery he was found to have tiny but widespread liver metastases. Mark's chance for cure was lost on the day he planned to be rid of his cancer. Although he lived for years after that, it was always while taking various chemotherapy regimens that often left him pale and bald. Eventually his liver metastases became resistant to all treatment, and it was time to move on to supportive care.

Mark was now faced with his upcoming mortality - the most profound experience in human life. What was his reaction to this inconsolable news? As his doctors, nurses, wife and family began to despair, he surged ahead with strength I had never before seen in a dying patient, and may never again. Mark faced his death with fortitude, grace, and a calm determination to carry on with his duties as a manager, husband and father.

St. Francis of Assisi, while hoeing his garden one sunny afternoon, was asked what he would do if he were suddenly to learn that he would die before sunset that very day. He replied, "I would finish hoeing my garden." This too was Mark's answer to the Spectre: "I shall keep living my life on my terms until I feel the grasp of your cold hand." He continued to drive himself to work. After arriving at the office he would rest for several minutes, gathering the strength to get out of his car and walk. Emaciated, with a faltering voice, he carried his load day after day, until he finally collapsed. Mark died two days after his last day at work.

Mark died three years ago, yet he still lives - inside of me. He has become my afflatus, my inspiration on living a life not measured by years, but by deeds. If there is one thing I learned from him it is this: life is only fulfilled when the mind and body are in motion. As long as I can stand and think, I will keep moving - see patients, laugh at jokes, wrestle with my sons, walk the dog, meet my wife for lunch, call old friends - get out and be a part of this great world, not wail in my chair how unfair it all is.

As St. Francis also said, "O Divine Master, grant that I may not so much seek to be consoled...as to console." This should be the prayer of every oncologist.

Wednesday, September 22, 2004

The Oncologist as Soothsayer

Is it compassion, or a morbid fascination with death that compels a medical oncologist to volunteer to predict how long his or her patient will live? It is almost a cliche' to say that the oncologist is always asked to provide the number of weeks, months or even years a cancer patient has to live. Since no honest mortal will admit to possessing the gift of prophecy, why do we attempt to answer this question? Any specific length of time given is obviously a lie, yet we oncologists continue to pronounce the forthcoming date of demise with Olympian solemnity, sending the whole room into a stone-faced silence, or we awkwardly yammer on about the statistics of survival: median, one-year, relapse-free, until everyone (the doctor included) is confused.

I realize that end-of-life plans must be made, and courage must be summoned to face the grief ahead, but predictions of survival are not only notoriously inaccurate, but also tend to add needless stress - especially if delivered in a rather cavalier manner (no need to look grim in front of the anxious family) that only induces shock. Predictions are an act of cruelty. They mark the future as a time of painful waiting, as if a calendar date circled in black is hung on the kitchen wall - ripping hope out of the hearts of the patient and loved ones.

Despite this, it is impossible for an oncologist to not comment on the request for predicting the length of time a patient has to live. It is a reasonable query, asked by concerned and loving caregivers. Often when I respond with a number it is because the end of life is very near, and I believe the family is better off forewarned and emotionally prepared, rather than stunned by the sudden announcement.

I personally have found it more helpful to use this occasion as a chance to sow encouragement, and shift the focus of all onto the life of the patient. Treatments are changing constantly, and who can say that a new drug may not lengthen the life of a seriously ill patient in the months or years ahead? I tell patients that if the cancer they have is associated with an average survival of 12 months, that means that half of the group is still alive after a year - why not cheer for the patient to be in that group?

It is a waste of a medical oncologist's career to not use any appropriate opportunity to encourage, to build up, to look for good news to share, to predict that relief of suffering, if not recovery, is just around the corner. It is easy to be the bearer of bad news in this world - but an oncologist should always carry the light of hope inside, and shine it on the cancer patient just when his or her world seems darkest.

Friday, September 10, 2004

Why do we fear the word "hospice"?

I just found out today that one of my patients, who is slowly dying from multiple cancers, has been enrolled in our hospice program without being told he is going into "hospice". At the request of his family, the "H" word was not spoken in his presence, as if this will shield him from emotional harm or depression when he begins to receive end-of-life care. This seems absurd to me - my patient knows that when he stops seeing his oncologist in the office, his treatment is over. Why would he be frightened about a compassionate program designed to help him live with dignity in his own home? Why do families fear the concept of hospice?

To me it seems that some caregivers live in dread of the idea of stopping a patient's chemotherapy, because to them it marks the beginning of the end of life. By not admitting that treatment is no longer delaying the growth of the cancer, they maintain the illusion that nothing has changed in the patient's prognosis. This does nothing to prepare the family for the inevitable - in contrast, it weakens their ability to cope, to reflect, to love.

Why do some of us avoid using this word in front of the cancer patient? Perhaps it is because "hospice" has become a euphemism for "execution". Many family members believe that enrolling in hospice seems to imply that a patient has been branded as dead, and is no longer permitted to enjoy the daily pleasures of life. Families therefore hide the dying process from the patient, creating a tense masquerade of home life that compounds their own distress.

I believe in speaking the word "hospice" when discussing the options for the care of the cancer patient who is finished with treatment. When faced with a choice between admitting the reality of the situation, or denying it, choose to speak the truth. It may seem an ordeal at the time, but the emotional release gained from deciding together to face the future honestly will strengthen the bond between the patient and his or her family, and perhaps ever so gently soften the grief to follow.

Welcome to The Cheerful Oncologist

If only for your reading pleasure, come and occasionally visit inside the cluttered but navigable, sardonic mind of a medical oncologist who simultaneously fights cancer and writes pithy pieces of prose about life in our self-conscious, post-modern world.

If cancer has ever touched close to you, or if you are interested in reading one doctor's ongoing story about treating cancer, this may be a site of interest. Too often in this country information about living with cancer and treating cancer is lacking, and I believe ignorance leads to prejudice against the cancer patient. Ignorance also foments unrealistic expectations, anger, crippling emotional distress. This is detrimental to good care.

Perhaps I could also compose a paragraph or two that illustrates the daily struggle to co-exist with hypocrites, phonies, egomaniacs, condescending liberals or just general idiocy. The amount of material I have to work with is staggering, is it not?

I was labeled "The Joking Oncologist" many years ago, due to my twin passions of killing cancer and making people laugh. Could a love of humor be a psychological defense against the sorrow of watching decent people die, day after day? Does this internal conflict represent the duality of the mind - the battle between the rational and the unfettered beast within us? Or am I just plugging one of my favorite novels - Steppenwolf?

If that's the case, then why not let Hesse speak for me:

Better learn to listen first! Learn what is to be taken seriously and laugh at the rest.

That's my weltanschauung - first published in 1927!