The Art of Dying

I cringe when I hear, “He died such a nice death!”  This description is an oxymoron since I never think of death as being nice.  Modifying the expression to “dying nicely,” that’s another matter.  This implies patient equanimity after a full and long life, freedom from pain and other distressing symptoms, the energy to put one’s affairs in order, a support system of family and friends, and time to say goodbye.

I remember well the description of the death scene surrounding a national officer of a Jewish organization.  I had witnessed his statesman-like qualities as he chaired board meetings and exasperating plenary sessions of conventions.  I also had an opportunity to get to know him personally on a tour of Israel.  When his inevitable death approached, he spent his days in bed at home, bringing order to his personal affairs and involvement in numerous civic and charitable organizations.  He cheerfully greeted numerous well-wishers, consoling them as much as being consoled by their visits.  He did not exhort God to change the evil decree.  From all that I heard, he was as much a mensch while dying as he was while living.

Without a statistical survey to corroborate my observations, I would say that the process of dying seldom matches what I’ve just described.  In defense of others whose deathbed scenes weren’t so peaceful, my friend’s mental functions continued intact and his symptoms were kept under control without clouding his intellect.  This contrasts shaprly with a patient of mine, a seventy-three-year old merchant, who was terrified of dying.  He wouldn’t close his eyes for fear of not waking up and refused sedatives for the same reason.  He railed against God for punishing him with an agonizing illness.  He refused psychiatric counseling and was disdainful of his rabbi, even refusing to allow him in his hospital room.  He struggled to his last breath, all of which added to the suffering of his wife and children.

And being a cleric did not sustain another terminal cancer patient.  Pain from prostate cancer, which had spread to all his bones, was controlled with minimal dulling of his senses.  It was ironic that this fifty-two-year old priest would be asking me, “Why would God punish me?  I’ve sacrificed my life to his service and this is my reward?”  Ill equipped to enter a theological dialogue, I resisted the platitudinous reference to Job and God testing his faith.  I did give him an opportunity to ventilate and I expressed my admiration of his contribution to our community.  This fell short of relieving his religious turmoil. 

Or the Protestant minister who during an Easter sermon had said, “I can’t wait to get to heaven and sit at the feet of my Lord Jesus Christ.”  Seventeen years later at age seventy-six, when he was suffering the ravages of untreatable lung cancer, it became time to test his declaration.  He failed abysmally for he, too, was terrified of closing his eyes.  I requested the patient’s wife to seek the help of her husband’s pastoral superior but, like me, he also was at a loss to bring solace to his colleague.

Then there are the innumerable patients who are seldom awake as the large doses of morphine that are needed to relieve their agony, dull their ability to communicate.  Relief of pain dominates the entire process of dying.  Hopefully, conflicts were resolved and goodbyes, tendered before this stage was reached.

Neither patients nor their doctors have any control over the myriad scenarios by which the dying process presents itself.  Nor does the patient’s psychological makeup always determine how he will react to his particular scenario.

Clara, a fifty-four-year-old schoolteacher, normally cheerful and stoical, lay dying of inoperable widespread cancer, which had caused intestinal obstruction.  Chemotherapy had failed months before.  A plastic tube entered her nose on its way to the small intestine.  There were intravenous needles in each arm, both covered with hemorrhages under the skin from failed IV’s and numerous attempts to draw blood for laboratory tests and, of course, there was a catheter into her bladder.  This was not a scene one would call conducive to equanimity.  She and I had already talked about relieving her intestinal obstruction symptoms by performing a hazardous ileostomy so that the nasal tube could be removed, permitting her to eat.  Clara declined this, asking that I let her die.  “Please take out all these dreadful tubes and let it end.”  I told her that without the nasal tube she would be in terrible pain and would soon be vomiting feces; without the catheter, she would develop painful urinary retention.  On the other hand without the intravenous solutions she would starve to death, usually a painless process, taking about ten days.  As though a judge were offering her death either by the electric chair, by a lethal injection, or by hanging, she made her choice.  “Stop the IVs.”  The idea was intolerable to the family and to the nurses who saw their role as nurturers.  Finally, accepting the patient’s decision, everyone consented to abide by her wishes.  Clara required little more than frequent mouth care.  She became more relaxed knowing that her travail would soon be over.  She had more patience for discussions with her husband and children.  The onset of coma was gradual; she died in her sleep from ventricular fibrillation.  An order “Do not resuscitate,” previously signed by the patient, was honored.

Terminally ill patients, particularly those who have witnessed the death of a family member, fear uncontrolled pain.  But equally frightening is the prospect of suffocation.  Medical ethicists debate whether or not intubation (placing a plastic tube into the trachea to allow easy passage of oxygen) falls in the category of “invasive” procedures for the patient who has declared that nothing invasive be undertaken to keep him alive.  In the case of John T. who was dying of emphysema, it was doubtful that intubation would have done more than relieve the exhaustion from the work required to move air in and out of his lungs.  Watching a patient struggle for every breath is a most unpleasant experience; for the patient it is a nightmare.  John had smoked two to three packs of cigarettes daily for forty-five of his sixty-five years.  A six-month attempt at reversing the disease by ceasing smoking at age sixty-three came too late; his disease was irreversible.  For a year he had managed to leave the house carrying a canister of oxygen but in the last six months he didn’t have the strength to get out of bed.   

John’s wife and children couldn’t get past their anger for his self-inflicted premature departure from their lives.  No one shed a tear in his presence.  Meaningful communication hadn’t taken place for months.  When it came time to consider helping John’s breathing with an endotrachial or a tracheotomy tube (in his neck), no one in his family could discuss the matter dispassionately.  John, between strained breaths, expressed a desire to die quickly and as soon as possible.  And yet when he and I sat alone to discuss this wish, he hardly mentioned his fear of suffocating.  “I can’t face my family day in, day out.  No one talks to me.  My kids hardly ever visit me.  You would think that they would understand cigarette addiction and not treat me like a pariah.  Everybody would be better off if I were out of the picture.”  I felt I earned my degree that day when I arranged a consultation with a family psychotherapist.  After three home visits not only had a relaxed rapport developed between John and his family, but even his breathing improved by a few, but significant, percentage points.  Six months later John lapsed into coma and died nicely at home surrounded by family.

Cousin Saul, age sixty-three, a brilliant physician, fell into an altogether different category of incurable illnesses shared by so many patients with a stroke or Alzheimer’s disease.  Saul’s stroke was massive resulting in paraplegia and expressive aphasia.  Though totally aware of his surroundings, in no manner could he communicate with the hospital staff or with family.  When my brother Jerry flew from Pittsburgh to California to visit Saul, he couldn’t wait to leave the room for all Saul did was cry silently from the frustration of not being able to speak.  Jerry compared Saul’s plight to that of a trapped animal.  He wished that he were able to place a pillow over our cousin’s face and end his agony.  In such situations all a patient’s preparations to face death soberly and with dignity fail under siege by forces beyond his control.  We onlookers breathe a sigh of relief when the patient’s eyes are finally closed forever.  “Thank God, his dying is over.”

Too seldom are Hollywood scripts adhered to.  There are exceptions; these add beauty to our lives.  Take Janet M., a close family friend.  Wasting away from the ravages of breast cancer, she designed her own home hospice situation before the word had become a functioning concept.  Janet lay in her bed giving solace to her husband and children.  She was able to handle with humor her admonition to her husband to look for a second wife.

And dear friend Beecie.  She said to my wife, Marcia, “I think it’s time to get my portrait painted.”  She was referring to the joke concerning a woman, who after her portrait was finished, asked the artist to add conspicuous items of precious jewelry, earrings, a necklace, and even a tiara.

“But why, if you don’t have any,” asked the puzzled artist. 

She answered, “I want to drive my husband’s next wife crazy looking for them.”  Beecie didn’t mean it.

Then there was Mary M., age forty-five, who astounded her physicians by persisting free of symptoms despite widespread bone metastases.  At the time of my frequent examinations we actually joked about my helplessness (and that of my consultants) to influence the inevitable shortening of her life.  Not deeply religious, she verbalized her curiosity about the afterworld she was certain existed.  Speaking to Marcia, she said, “Keep your eyes and ears open.  I’ll find a way to stay in touch with you.  I’ll want to know about the books you’re reading.”

My Aunt Rose deserves honorable mention as an example of a strong life force carrying her through what would have been insurmountable difficulties for the average person.  She suffered from blood flow problems to her legs which would lead to their eventual amputation. In her eighties she underwent by-pass surgery to improve the circulation in her legs, delaying amputation by three years.  When gangrene developed in her toes, she accepted amputation of the foot and when this failed, amputation of her leg above the knee.  She was zealous with her exercise program; within a few months Aunt Rose was walking with a prosthesis and a walker.  She rarely missed a family function or a Friday evening synagogue service.  It was only in the last week of her life six years after the first amputation, that she became delirious as a result of gangrene of the remaining leg.  She died within days after a second amputation, six months short of her ninetieth birthday.

Without entering the debate on assisted suicide, I can categorically state that the most pleasant dying scene I have ever witnessed was Sara’s (described in detail in Down with doubletalk to cancer patients in my memoir, By All Means, Resuscitate).  With no further treatment available for her rapidly advancing cancer, she lay in her own bed enveloped in loving care that only family and hospice could provide.  Pain therapy was minimally effective but fortunately did nothing to dull her mind.  Already having problems with swallowing and breathing, she knew that suffocation was around the corner.  Paralysis in one arm would soon extend to all four limbs.  She discussed every imaginable subject with her family.  With me she reviewed her life story, her aspirations, and her satisfaction with the end-of-life plans she had designed.  She joked with us all.  No one cried, not even at the moment Sara swallowed the life-ending capsules; I had said goodbye an hour before, reluctantly following legal advice not to accompany Sara to life’s exit.

The expression “dignified death” troubles me.  In many instances it is the family’s dignity, which is offended by the death scene.  The patient may be beyond concern for his appearance or the foul smells of his uncontrolled excretions; we, his family, are.  So we make frequent diaper changes, bathe him and give mouth care, change his bed sheets and pajamas, and comb his hair.  Or if unable to provide homecare, we choose the nursing home with the least offensive ammonia odor.  Since we are compelled to give all respect to the body after a person dies, how much more so do we demonstrate this respect while the patient remains alive.

End of life decisions frequently are thrust upon us on an untimely basis.  Heroic resuscitative maneuvers on a terminal patient are instituted by well-intentioned emergency room personnel before completely assessing the patient’s situation and before any discussion with family.  The urgency of the moment does not allow time for perusing prior charts; the “Do not resuscitate” order lies in limbo.  But a red line has been crossed.  Discontinuing life supports is more complicated than arranging not to begin them.  The former may require a court order if doctors aren’t in agreement with the family.  And at this point it is not the patient’s dignity, which is in jeopardy, rather the family’s.  Conflicts arise among them over the decision to “pull the plug.”  “For whose sake are we doing it?  What’s your hurry?  Are you impatient to end the dying process?  Are you concerned about wasting our inheritance?”

I was afflicted with these ruminations when my brother Jerry suffered a massive stroke after coronary by-pass surgery.  MRI showed that a large, vital section of his brain was destroyed.  It was almost certain that he would never awake from his coma and if he did, the best we could expect would be an existence like that which Cousin Saul achieved; Jerry had stated categorically to me that he would never want that kind of life.  The doctors agreed that supports should be withdrawn.  The only question was, “When?”  It was only day two of this final illness.  Jerry’s son asked that it not be on his own birthday, which would be day three.  What about my plane reservations taking me back to Israel, which allowed only enough time for burial and the prescribed days of mourning?  Or Jerry’s wife Irma’s wish to keep Jerry with her as long as possible.  All of us tried to be objective when we made the decision to detach Jerry from the respirator.  I, for one, didn’t feel dignified in the process.  Many years later my discomfort remains.

So, we all, patient, family, and physician, work to lessen the tragedy of death. The patient tries to resign himself to the inevitability of his demise and to put his financial and emotional affairs in order.  His family is obliged to share the patient’s reaction to death, to be able to discuss their sorrow on losing him while not resisting his acceptance of dying.  Lastly, the physician must broaden his role of healer to caregiver until the patient’s last breath.  This requires learning to let go, listening to the patient’s fears and desires, being receptive to follow whatever path the patient requests within limits of the law, and on rare occasions extending these limits.  Each participant can then be said to have acted with nobility and. dignity