E. Wesley Ely
The first time I saw Jessa, she lay crumpled in the ICU bed, paralyzed, expressionless and unable to speak. A military veteran, she had fought in Desert Storm, but she now was facing a deadlier and more inexorable foe: amyotrophic lateral sclerosis (ALS), aka Lou Gehrig’s disease.
This disease causes progressive loss of muscle control, and Jessa was unable to speak, eat or breathe on her own. Her only means of communicating was through small facial movements–opening and closing her eyes or mouth, raising her eyebrows.
A dozen people made up her ICU team: three interns, three residents, a pharmacist, a nurse, a respiratory therapist, a social worker, a hospital chaplain and myself–the lead physician, or intensivist.
My intensivist mind, trained to seek solutions, skitters down a patient’s problem list in search of answers. And Jessa’s list was extensive: she needed a feeding tube, IV fluids, diapers and a special bed to prevent bed sores, antibiotics for a newly contracted pneumonia, intermittent sedation to ease anxiety and narcotics for chronic back pain.
But now, listening to the respirator pumping air into Jessa’s lungs and felt her intense cobalt gaze on me, I saw one thing clearly: any concerns about antibiotics or nutrition took second place to a larger question.
“What do we know of Jessa’s wishes about staying on a ventilator, now and in the coming weeks and months?” I asked the team when we stepped outside the room to confer.
“Her chart says that she wanted to be placed on a ventilator when she couldn’t breathe on her own,” said one resident.
“Look how long Stephen Hawking has lived that way,” the nurse chimed in.
“I don’t think we should look at someone else’s life,” another resident burst out, clearly frustrated. “She’s suffering. I’d never want to live like this. She probably didn’t know it would be this way when she requested life support.”
I listened, having no strong opinion of my own as yet.
At that moment, Jessa’s husband Zach walked into the ICU. We shared our concerns about Jessa’s situation and asked him about her wishes.
Calmly, he replied, “Doctors, while it wouldn’t necessarily be my choice, Jessa does want life support so that she can have as much time as possible with me and the people around her. She was raised to believe that all life, however frail, is sacred. It might seem paradoxical, but that was a key reason she joined the military–to defend life and freedom.”
Later that morning, he shared his own wish: “Just make sure Jessa knows that she’s not a burden, and that serving her is our privilege.”
This conversation led to others over the next two weeks, and they sparked what I now see as a transformative period in my growth as a physician and in my understanding of patients like Jessa.
The next day, Zach told us more. “Jessa was born in Germany; she’s bilingual. We’ve been married for twenty-seven years. We have no living children–we had several miscarriages. I’m all the family she has.”
It had been Jessa’s dream to serve as an American soldier. After they married, she enlisted and was deployed to Iraq as a diesel mechanic–one woman among over 1,000 men. “She got caught under a tank once and smashed her head getting out,” Zach recounted. “They flew her to an army hospital in Germany, and she recovered and went back. She’s tough as nails.”
More than twenty years later, he said, she was diagnosed with ALS. “I’ve learned a ton from her about serving without concern for self,” he added. “And now I’m learning even more. The amazing way she adjusts to whatever life throws at her….She’s constantly recalibrating my vision of how to make the most of every moment. Like today, she’s on that breathing machine, and she just smiled at me with her eyes.”
In those few minutes, Zach revealed our silent, nearly motionless patient as a heroic person–someone I admired not only for her technological skills but for her pioneering attitude and resolve. I got an inkling of why she was fiercely holding onto the time she had left.
Still, some team members continued to see her quality of life (or QOL) as unacceptable. More than once, they called it “hellish.”
When I told Zach this, he said, “Jessa once said she believes hell to be the absence of hope, just as cold is the absence of heat and darkness the absence of light. Now that you’re getting to know her, can you see that she doesn’t consider her illness hellish?” He whispered, “She’s surrounded by love.”
These discussions, as difficult as they were, marked a major shift in my understanding. I began to see how often I impose my own QOL standards onto patients–a fundamental clinical error.
Researching the empirical data, I learned that ALS and other “locked-in” patients often rate their QOL as acceptable despite their physical debility. Their focus shifts to less tangible qualities–transcendence, spirituality and security. Pondering this, I realized more and more clearly how, in this particular situation, it was Jessa’s values and perceptions that mattered, not mine.
Our role, I saw, was to dive into the chaos of Jessa’s life and offer her care and comfort despite our inability to cure her.
Over the next week, we worked with our palliative-care team to ease Jessa’s pain, anxiety and delirium (which receded along with her pneumonia).
Every day, I made a point of remembering bioethicist Edmund Pellegrino’s words: “Healing can occur when the patient is dying even when cure is impossible.” With this in mind, I asked Zach if Jessa would enjoy being read to, as our team had done with other patients.
“Doc, she loves poems and the Psalms,” he said immediately. We began to take turns reading to her every day.
On Jessa’s last day with us before she was to leave for a long-term care facility, I chose Edna St. Vincent Millay’s Sonnet XXX.
“Love can not fill the thickened lung with breath, nor clean the blood, nor set the fractured bone; yet many a man is making friends with death, even as I speak, for lack of love alone….”
As I read, Jessa’s mouth opened wide, in a smile brighter than any we’d yet seen from her.
The medical student across the bed from me began to cry. “From joy and amazement,” the student later said.
Seeing Jessa’s smile and the student’s tears, I felt my mind stop in its tracks. Time stood still.
Jessa had lifted us above the physical realities of our existence and into something mystical. I can’t explain it, and I almost don’t want to try. Let’s just say that she gave us a private treasure, one that I will always savor as a gift I never expected or deserved.
I squeezed Jessa’s hands, holding her eyes with mine. Finally she looked away and up to the ceiling, and I stood in thought beside her.
Although my team and I loomed over Jessa as she lay in her bed, I knew that in spirit she soared high above us.
About the author:
E. Wesley Ely is a professor of medicine at Vanderbilt University School of Medicine and associate director of aging research for the Tennessee Valley VA Geriatric Research Education and Clinical Centers. He has authored more than 275 peer-reviewed articles. He and his wife, Kim Ely, a surgical pathologist at Vanderbilt, have three lovely daughters. His reflective writing has appeared in the Wall Street Journal, JAMA, Annals of Internal Medicine and elsewhere. “I got into writing as an outgrowth of being raised by a single mom, Diana Ely, who was an English teacher and director of Shakespeare. Without this form of reflective writing, I’d never be able to process the immense gift of being immersed in the lives of countless wonderful patients, each of whom has a unique story and path.”
23 thoughts on “Last Stand”
For several months, up to last week, I served a patient exactly like this: end-stage ALS on a ventilator who could not eat, speak or move, but could communicate with a letter board and by raising his eyebrows with different expressions.
It was possible for him to communicate a lot in this very limited way. He was a very loving man, and was loved by many, and I could feel his love. It was a privilege to care for him.
Pres., Hospice Patients Alliance
Member, Pro-life Healthcare Alliance
(You are) (the story is) (Jessa is) so beautiful. Thank you.
BEAUTIFUL AND INSPIRING! THIS PUTS WORDS ON WHAT I FEEL IN MY HEART FOR OTHERS AS A NURSE AND A PERSON AS WELL AS FOR MYSELF! GOD BLESS ALL SUCH COMPASSIONATE CARE GIVERS AND ALL THE JESSAS OF THE WORLD! CAN WE NOT SEE OUR UNBORN BROTHERS AND SISTERS IN THE SAME LIGHT, NO MATTER THE CIRCUMSTANCES, THEIR MOTHERS AND FAMILIES……….LIKE ME I HAVE GRAND CHILDREN I WILL NEVER KNOW, NOT ALLOWED AND WELCOMED TO SEE THE LIGHT OF DAY AND THEIR RIGHTS FULFILLED FOR OUR FEARS AND SELFISHNESS., LAACK OF UNDERSTANADIONG AND COMPASSION!….
GOD HAVE MERCY AND BLESS US ALL!
Beautiful. Powerful. Heart-breaking. Thank you.
Thank you Dr. Ely for this potent reminder, told so eloquently, of the importance of each individual’s right to choose. Ironically I am on my way back east to assist my sibs in caring for our 90 year old father, a WWII vet who is deaf and blind. Our family is mostly docs and nurses who have been amazed at Dad’s wishes to have an anuerysm repair, which he survived, and now does NOT want to be a DNR. It seems to us that his world has become so limited, yet go on he will. You have reminded me of the privilege and sheer joy of rubbing his back and reading poetry into his TalkSpeak. Thank you for reminding us of the importance of Presence and personal choice. I agree, this story should become part of medical and nursing education.
From a physician and ethicist —
Thanks for the important reminder that we in medicine are often too eager to judge another person’s life. Love and joy can exist in so many ways. Our role is to help people to have the “best possible” days as they judge them.
Such a powerful story. Thank you so much for sharing this Dr. Ely. I have already sent this to our Conversation Ready team and Geriatric Resource Nurses…have received great feedback from them about how this will help them stay focused on the patient’s wishes, even if they don’t match our own values. As a gerontological clinical nurse specialist this is a piece I will be sharing with others for the rest of my career!
Love is not all by Edna St. Vincent Millay
Love is not all: it is not meat nor drink
Nor slumber nor a roof against the rain;
Nor yet a floating spar to men that sink
And rise and sink and rise and sink again;
Love can not fill the thickened lung with breath,
Nor clean the blood, nor set the fractured bone;
Yet many a man is making friends with death
Even as I speak, for lack of love alone.
It well may be that in a difficult hour,
Pinned down by pain and moaning for release,
Or nagged by want past resolution’s power,
I might be driven to sell your love for peace,
Or trade the memory of this night for food.
It well may be. I do not think I would.
I can not find Milays Sonnet XXX. Can anyone help?
Check out this website: http://www.poets.org/poetsorg/poem/love-not-all-sonnet-xxx
Thank you for sharing this beautiful story. Everyone should have the right to make their own choices–whether to live longer as she choose to do–or die with dignity and at a time of your choosing. There should be no laws, “QOL standards” , religious or even 3rd party payers setting these standards. It is our life–no one elses
My son, Jack, suffered from a rare form of muscular dystrophy and during his 15 years of life, he was never able to walk or talk, he was g-tube fed, and he was trached and ventilator dependent. But he was loved beyond measure and he was happy. Your words of describing Jessa’s spirit as soaring high above you describes my Jack too. He had a spirit about him that was hard to explain, but could be profoundly felt by those who spent time with him. He had eyes and a smile that stole your heart away. Thank you so much for this beautiful piece, it reminded me of my own special spirit who passed away a year and a half ago.
Thank you for the reminder of whose eyes we should be seeing with.
Thank you for an inspiring piece. As an RN, I often assisted families at dying patients bedsides and can actually see the moment the animated life leaves the body even in the quietest of people. But Jessa was alive and wanted to be. Her animation was her soul still singing even though her body failed her. Her hero was her husband who understand and welcomed her not as a burden but as the heroine of her own life no matter her physical limitations. Our life is one of spiritual awareness no matter the belief. Thank you for this beautiful tale of this.
A beautifully written and thoughtful piece. You also took me back a few years to my medical studies at the University of Kentucky in the sixties when Edmund Pellegrino headed our Department of Medicine. He was a wonderful teacher and mentor to many.
I was impressd by the Movie Ikiru, directed by Kurosawa when I watched it 10 years ago and was surprised that I had watched the movie several times and had not noticed
the similarity with The Death of Ivan Ilych. Both stories are extremely frightening to me and magnify my own dread and fear of death. Add the Last Stand and we have 3 dramas calculated to recreate the hyperventilation, profuse sweating, I felt as an adolescent when God didn’t send me a sign that he exists.Yet as described by Dr. Ely , Jessa has defeated the anguish of facing the reality of death.
A fine example of a better way to face death.
Such an important piece in the “less is more” environment pervading medicine today. To take a stance against the “less is more ” mantra is not tolerated by the evidence-based and bureaucratic proponents that believe medicine is no longer “individual,” but one of guidelines and algorithms. As a palliative care physician, my consults are often looked upon as failures if I do not leave a room with a DNR and withdrawal of care.
But as mentioned by others, we never know what we will do when confronted with our own death, we only think we know. It is wrong to force our beliefs and values on others, and I fear that is what is happening in contemporary medicine.
That said, there is another side to the story, one where the suffering is horrible. Thus, we need balance, but in the end, it comes down to honoring a person’s wishes.
Sorry, hit Send before I finished editing, but I’ll let my comments stand as they are…everyone gets what I’m saying.
And I think Lee Kagan’s sentence says it best: “And then one day we find that merely sensing the presence of a loved one is good enough.” Particularly when it’s what that lived one wanted.
This is an important piece. It goes against the current dogma we in medicine are usually awash in, when as soon as somebody is terminal and requires lots of care (when WE won’t get the gratification of significantly prolonging their life) we’re ready to give them the bum’s rush out of this world. Sometimes we cloak it in financial doublespeak- “cost effectiveness”, “allocation of resources” and the like. Sometimes it’s because their suffering makes us too uncomfortable- and sometimes it’s because we don’t want to do the work.
When I took my father to see the maven at UCLA to confirm his diagnosis of ALS and the doctor told him he might some day need a feeding tube, my father waved his hand in front of him and said, “That will be my last day.” Four months later my mother was feeding him pureed food through his G-tube.
Projecting our own wishes on another, as some of the students did in your story, is a risky business. Not only do we not know what others may want, as was true about the patient in your beautifully written and moving story, but we don’t even know with certainty what WE will want when it’s our turn to say yes or no to some proffered intervention, as my father’s story illustrates.
We project our own healthy, comfortable selves into an imagined unhappy situation and think we’d never want that. And then one day we find that merely sensing the presence of a loved one is good enough. Talk about miracles,,,
Very nice piece. We cannot judge what is QOL for another. Reading to another is an act of loving compassion. What a meaningful gesture to sit with someone. Thank you for your piece; it is illuminating.