end of life care

When Hope at the End of Life Transcends Mere Words on a Page

iStock_000015624872MediumSometimes writing has a strange way of foreshadowing life.

The past six months have been marked by an almost constant struggle to shape an unwieldy manuscript on hope at the end of life into something manageable and hopefully meaningful. I finally relinquished the tug-of-war last week, albeit temporarily, to catch my breath, regain my wits, and presumably gain perspective by achieving some distance from the tough topic that I’d chosen for my next book book. Yet, the topic seems now to be choosing me.

In the past 48 hours, there have been two, life events that have required my wife and me (and our family) to hold onto hope at the end of life.

The first occurred when my wife’s brother was admitted to the hospital with a life-threatening pulmonary embolism. Since Lori is the physician in the family, the situation necessitated her frequent consultation, albeit at a distance of over 1,000 miles. Thank goodness other family members were able to be at his bedside, despite having to travel long distances, while also managing the ongoing realities of their lives.

Simultaneously, another family member, suffering from a stage 4 brain tumor, became critically ill as a result of his disease. As a cancer physician, Lori has navigated the fine line that separates life and death with an untold number of patients and their families as they search for a glimmer of hope under the sterile glow of the ER’s fluorescent lights…but this was different…it was intensely personal.

48 hours, two events, and life is inevitably changed forever. Hope at the end of life is no longer an intellectual concept safely ensconced in my manuscript. It has leaped from the pages into the present moment. It has brought prayer to our lips for those whom we love.

The family is blessed to have a strong sense of faith. Yet even the strongest faith doesn’t remove the sharp sting of loss. As we enter the week, we will hold on to the hope that our family members are in God’s hands, and that, whatever the outcome, they will comforted by his grace, as will those who love them the most.

What I Learned From the Death of My Parents


Jack & Shirley Leifer in Havana, Cuba -- 1946.

Jack & Shirley Leifer in Havana, Cuba — 1946.

Every family has its rituals, and one of ours was Sunday night dinner. It was a time to share news, to talk about our hopes or dreams, to simply relish time spent together. Sunday, May 20, 2001, was no exception. I went home after dinner, counting my blessings—so grateful to have my parents, despite their advancing ages.

On Monday, a call from my mother changed my world. My father had slept-in, which despite being 86, was not his habit. When she went to rouse him, there was no response. He seemed to be breathing okay, but was completely unresponsive. That’s when I got the frantic call.

So began our final odyssey with my father…a trip that would take us into the deepest realms of the health care system.

Eight minutes after calling 911, EMS paramedics were on site preparing my father to be transported to a nearby Emergency Room. Upon arrival at the hospital, the frenetic pace of the first responders was replaced by long hours of waiting as my father slowly moved from the ER to the ICU. There, a team of specialists went to work seeking to identify the underlying cause of his condition.

My father remained in a coma throughout that week, during which time our family maintained a vigil at the ICU. The waiting room, our temporary home, was bathed in the green sterile glow of fluorescent lights. It was a spaced shared with other families in crisis. Its eerie quiet was punctuated only by breathless sobs as bad news was delivered to loved ones. Whenever possible, we escaped to be at my father’s bedside, though watching the life slowly ebb from this once strong man was so painful.

Toward the end of the week, the doctors informed us that an underlying blood disease had transformed into a fulminating type of leukemia, from which my father would not recover. We were told that the merciful thing to do would be to let him go. When I asked for more information upon which to make such a difficult decision, a female oncologist turned away from me and directed her response to my brother, a physician. She seemed annoyed that I would not blindly accept what had been recommended, and cloaked her response in impenetrable medical jargon.

I again asked a series of questions—including whether my father was aware of his surroundings. A different physician addressed me directly and provided assurance that my father had no awareness and promised that he would quietly pass when we removed life support. After a family conference, we agreed to take him off the respirator.

As my father’s lungs labored for breath, he raised his arms up over his head and let them drop. I shot a sharp look at the ICU physician, who said that it was nothing more than a muscular reaction. My father repeated this motion several times before giving up. It was no simple twitch…it was more of a plea not to give up. His instructions to us had always been “Do everything in your power to keep me alive.” He was a fighter with an indomitable spirit. I will always feel that we let him down.

I hugged him for a last time, told him how much I loved him and would miss him, and said goodbye. I promised my nearly atheistic father that he was in for a beautiful surprise at what lay ahead of him.

After we had said our collective goodbyes in the bustling ICU, my brother and I took my mother’s arms and walked her out. Her inseparable partner for 61 years was gone.

My brother and I feared that it would not be long before we lost our mother. Life without her soul-mate would simply be too much to endure. But thankfully, she proved us wrong and lived another six years.

My mother’s death could not have been more different and opened my eyes to what Dr. Ira Byock refers to as “dying well.”

As my mother approached her 88th birthday, it was clear that she was growing weary of life without my father, as well as contending with an increasingly list of infirmities. Due to a series of falls, my brother and I had arranged for caregivers to be in her home 24 hours a day. This, too, she tired of, but accepted as a condition of maintaining some level of independent living.

Despite the careful eyes of her caregivers, she nonetheless fell again; this time breaking her knee. She was briefly hospitalized, during which time she was evaluated by an orthopedic surgeon. After viewing her x-rays, he recommended an immediate operation to pin the broken bone.

I asked if he was aware of my mother’s staggeringly high blood pressure and poorly controlled diabetes. He said yes. I asked if these conditions would substantially increase the risk of surgery. He grudgingly said yes. Finally, I asked what would happen if we did nothing other than bed rest. He indicated it would probably take an additional two to three weeks for her bones to heal.

It was stunning to me that the surgeon was willing to trade off a couple of meager weeks of bed-rest for a significant risk of surgical complications or death. My mother and I agreed that it was time to leave the hospital and go home. I informed the orthopedic surgeon that there would be no operation.

I’m not sure exactly when it happened during my mother’s convalescence, but, at some point, she decided it was time to let go. The fight was over, and she was ready to join my father. So she simply stopped eating.

I sat on the edge of her bed and asked if she knew what she was doing. She told me that she had been graced with a glorious life, and it was time to say goodbye. Her knee was mending. That was not the issue. My mother had watched as more and more elements of her life lay beyond her control. Through a simple, passive action, she could regain control and direct the remaining course of her days on earth.

It would take many weeks for my mother to pass. We brought in hospice, which helped us maintain her comfort and manage any pain or anxiety. Though painful to anticipate her loss, we nonetheless managed to savor every moment with my mother.

In the last few weeks, she became very confused and fatigued. Lucid moments seemed to be forever gone. I knew that death was near as I arrived early one morning to check on her. I was prepared to see the progressive and inevitable decline that had marked each of the past few days. But instead, I found my mother sitting in bed fully awake. She said, “John, honey, come here, I want to talk with you.”

Something incredibly powerful and unexplainable was happening. My mother was completely lucid and focused. It was as though her age and infirmity had been momentarily erased. She spoke with exacting clarity—wanting to ensure that I took in every measure of love and wisdom being doled out.

She said, “Remember how much your father and I treasured you. Always carry our love with you. And know that we will be looking down upon you…we will always be with you.”

I told her I loved her and reassured her that she wasn’t going anywhere quite yet…it wasn’t her time. But my mother knew differently. She told me she had to rest. That was the last time I spoke with my mother. She would pass away the next evening with my wife and me at her side. I would hold her hand as her body took its final breath. There was a peace in life’s finality.

I had once asked Elisabeth Kübler-Ross, “What happens at the moment we die?” She responded, “It’s like a cocoon. When a butterfly is ready, the cocoon opens up and out comes a butterfly.”

That’s how I choose to remember my mother’s passing—like a cocoon opening to let a beautiful butterfly soar.

I witnessed two parents die under very different circumstances: one confined to an ICU and tethered to a ventilator; the other lying peacefully on a bed at home surrounded by loved ones. The experiences could not have been more different, and the lessons learned will stay with me forever.

Death Is Not the Enemy

Whether it is driven by cultural narcissism or some unique feature of our genetic make-up, most Americans are undeniably unaccepting of the inevitability of death. George Lundberg put it succinctly: “Let’s face it, no one wants to die but everyone must. Despite this overwhelming reality, we continue to chase the illusion of life everlasting.”[i]

This lack of understanding and avoidance of the reality of death come at a price. Without discussion, our fears, hopes, and final wishes go unattended. As Otis Brawley, MD, observed: “We cannot accept that death will come, and thus we cannot make a plan, talk reasonably about it, work our way to understanding, to the basic part of our humanity.”[ii]

Yet, as Lundberg and others have pointed out, death is not the enemy: “The real enemies of medicine are premature death, disease, disability, pain, human suffering.” [iii] Kübler-Ross would add “peace and dignity” to the list of enemies: “We would think that our great emancipation, our knowledge of science and of man, has given us better ways and means to prepare ourselves and our families for this inevitable happening. Instead the days are gone when a man was allowed to die in peace and dignity in his own house.”[iv]

The Road Less Traveled

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.[v]

Nowhere do Frost’s words ring more true than when facing end-of-life decisions. One path, if pursued to the end, leads to a medicalized death. Along the way, every tool, technology, and trade-craft is used by physicians to preserve life. It often begins in the ER and ends in the ICU, as it did with my father.



After You Hear It’s Cancer: A Guide to Surviving the Difficult Journey Ahead. It is available at:


The Myths of Modern Medicine: The Alarming Truth About American Health Care.   It is available at:


[i] Lundberg, Severed Trust, 221.

[ii] Brawley, How We Do Harm, 122.

[iii] Lundberg, Severed Trust, 231.

[iv]ElisabethKübler-Ross, On Death and Dying (New York: Macmillan Publishing, 1969), 7.

[v] Robert Frost, “The Road Not Taken,” http://www.poetryfoundation.org/poem/173536.