Category Archives: end of life care

Lost On Call

–Ann Neuser Lederer

was on call, and tense. Newly employed as a visiting nurse on the edges of
Appalachia, I had recently moved to this place
from a large rust belt city hundreds of miles to the north.
Our territory extended down to the river cliffs,
and outward through patchworks of farms.
I didn’t know it very well, especially in the dark.
It was a weeknight. I was tired from the day’s work.
The beeper jolted me awake.
I fumbled into my clothes, neatly folded nearby, awaiting.
I was called out to a place I had never been, on the edge of the county,
to a death of a patient I had never known.
It was the middle of the night. There were no lights anywhere.
I peered at the directions written on the paper.
Ever so slowly I made my way down the winding tree-lined lane.
It was one of those roads with steep drops on both sides and no shoulders.
Only the halo ahead, created by the headlights,
hinted which way the next curve might lead.
As I turned a bend, I spotted from the corner of my eye an odd red glow,
low to the ground, seemingly coming out of nowhere.
Slowly, I realized it was a pile of something smoldering.
I did not know anything about field fires then.
Wondering, tempted to imagine, I forced myself to attend to the task at hand.
I could not find the turn-in for the house. I must have passed it, so I backtracked, tried again, a little scared. A full moon rose over the bare tree limbs, soothing me with its steady presence. I followed a twisty road up a hill.

Far to the back of a farm, a trailer was parked. This was the place.
They sat, awaiting my knock.
They had no running water. The corpse had soiled himself,
maybe a good while before dying. They wanted him clean for the mortician.
They brought a bucket and I tried my best.
Fresh diaper, and shirt, buttoned to the neck. Hair brushed. Mouth closed.
Ready.
Now, the red glow in the dark field, the white moon above,
lighting the road up the hill are permanent reminders of potential surprises,
against the nights of dread.

(Excerpted and used with the permission of the author, published in The Country Doctor Revisited, KSU, 2010)

Nurse Lederer was called to help in a setting quite different from one familiar to her. She was called outside her comfort zone to care for a patient who was poor and dying. As she describes the setting, I felt her fear and discomfort. Sometimes medicine calls us outside of our selves, to walk in the shoes of another, to see what it feels like to live in a world different from the one we know. You don’t need to go to another country to experience a different culture. We have reflected on this in other blog entries [December 19, 2011 and January 9, 2012].  It may be the same culture, but it might be a different sense of personhood—what it feels like to be old or disabled or have a mental illness. So far in your career, have any patient encounters given you the chance to experience life from another perspective? If so, tell us about it, preserve privacy please, no identifying information. What did you learn? How did it alter your view of the world?

Read other work by Ann Neuser Lederer.

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Thank God for My Ass

–Therese Zink

I am not referring to my backside, although I do have a well developed gluteus
maximus due to my stocky German build and fifteen miles of running every week. My ass is Jimmy, a shy miniature donkey (think Shrek’s pal) who has been the companion of my horse, Indy, on my twenty-acre farm for almost four years. Recently Jimmy saved my ass. Please pardon my crass language, but it is the truth.

At about eight one evening, my cell phone chimed as I was driving home.
The local nursing home needed help with an elderly gentleman who had been
admitted three days earlier. My partner had given him some furosemide late
that afternoon for congestive heart failure, but Mr. Olson was still edematous
and very short of breath. “The family is upset and wants me to do something,”
the nurse reported. “His hemoglobin is four and his potassium is six. Will you
talk with the daughter?”

A hemoglobin this low would require a transfusion of several units of blood,
and the potassium suggested kidney failure. “Sure,” I responded. Not wanting
to be the student who lost her homework, I said, “But I don’t know him. Please
read me his diagnoses and tell me what meds he’s on.”

It took the nurse several minutes to tick off the list, which included some
dementia and repair of a thoracic aneurysm seven years ago.

“How old is he?” I asked wishing I was not the one on call.

“Eighty-eight,” she informed me. “He’s very sick. DNR-DNI. The family is
pushing me to do something. The daughter is really upset.”

As I drove in the darkness toward home, I took a deep breath and readjusted the
phone next to my ear. My new challenge flashed like a neon sign—the distressed
family of a new patient who I didn’t know. “Any thoughts?” I asked the nurse.

“The daughter is a handful. Good luck.”

“Put the daughter on,” I said and prayed for inspiration.

“This is Janet,” the voice said. “You know me. My husband and I borrowed
your donkey for our church’s Christmas nativity pageant.”

I thanked God for the connection, some place to start this conversation. “Of
course, Jimmy. That was a cold day.” I said and remembered that the shepherds,
kings, even Mary and Joseph, wore snowmobile suits under their cloth costumes. Thick Sorel boots peeked out beneath their flowing robes. Jimmy was insecure without his buddy, Indy. So this manger scene had had a horse and a donkey. Janet and her husband had given me the digital photos that I had cut and pasted into my Christmas letter to family and friends. “I am glad to talk with you again, but I am sorry about the circumstances. Tell me your understanding of what’s going on with your Dad?”

Janet cleared her throat. “My mom cared for him at home for six years. He
started having trouble walking two weeks ago, so I started coming every day
to help her. We decided he needed more than we could do and looked for a
nursing home. There was an opening here, so we moved him last Friday. He’s
gone downhill since.”
I heard the frustration and recrimination in her voice: Why was he doing
worse, not better at the nursing home? “The nurses tell me he has a lot of fluid in his lungs,” I said. “We can help him breathe easier.”
“Can you help him get better?” Janet asked.
Read the rest of the story

First published in JAMA,299:16 (2008):1879–80, used with permission in The Country Doctor Revisited (Kent State University Press, 2010)

Building trust is an important ingredient to the doctor-patient relationship. In the 4 habits model, Dr. Frankel ARTICLE  presents a very practical model for thinking about how to approach the patient. Sometimes trust must be built rapidly, such as in an emergency or crisis. In this story, I was faced with the angry daughter of a patient I did not know. Luckily my miniature donkey gave us a place to start the conversation. If you are on a rural rotation, what have you observed about how doctors and nurses build trust with patients?

End of life decisions–becoming your grandfather’s physician in rural Tennessee

–David McRay
Dr. McRay tells the story of helping his grandfather decide to end dialysis and agreed to be his physician so he could die at home. ..

As his creatinine level rose, his hematocrit fell, he had no choice. With the itching worse and the fatigue incapacitating, if he wanted to feel better—in fact, if he wanted to continue to live—he needed to begin dialysis. He did not understand what was being offered, how it would work or how it would make him feel. The therapy was never described as a form of life support
with all the customary conversations about indications, alternatives, ethics, and options for withdrawal. It was simply the next step in the management of his illness; a step he felt forced to accept but never really did.

The nearest dialysis center was in a town forty-five minutes north. Three days a week, my grandparents would leave home early in the morning and make the trip to greet the staff and submit to “misery,” the word he used to describe the way dialysis made him feel. Miserable though he was, he made the best of the situation, as he had always done with every hardship he encountered in his life and for two and a half years, he drove himself to dialysis most of the time.

A stroke changed everything. He awoke that morning with some troubling weakness and numbness in his right arm and leg. An ambulance trip and brief evaluation in the local hospital emergency room were followed by a transfer to the major medical center in Nashville where my grandfather remained hospitalized for two weeks. He was discharged to a rehabilitation hospital and then an extended care facility. He never suffered from a severe loss of function, but he became dependent, unable to attend to his most basic needs. His dignity was under attack; his spirit broken.

When his wife of sixty-one years passed away in her sleep, he asked, “What will happen if I don’t go back to dialysis?”

“I don’t know” was the only answer I could provide. I had never encountered this circumstance before. I knew he could delay his treatment a day, maybe two. A few days later, I spoke with a nephrologist in my community. She seemed very uncomfortable with the conversation and described the difficult deaths of two patients who chose to stop dialysis during her fellowship. Beyond that she offered little.

Granddad approached this decision in his usual careful and thoughtful manner. We continued our conversation and I tried to answer his many questions. We referenced the Christian Scriptures, talked about his relationship with God, and spoke of the confidence with which he felt he could approach the end of his life. We discussed other situations in which patients make decisions to withdraw life-sustaining medical care such as mechanical ventilation and tube feedings. He concluded that for him discontinuing renal dialysis was similar to discontinuing mechanical ventilation in the face of an irreversible, terminal illness. His kidneys had failed and would not recover. His life was without joy and now devoid of the experiences that had given it rich meaning for almost eight decades. Existence was limited to restless sleep on the bed or the sofa with painful, exhausting, and embarrassing trips to the bathroom.

Dr. McRay’s grandfather was enrolled in hospice and Dr. McRay agreed to become his grandfather’s physician so he could die at home. ..

The morphine and the hypoxia-induced sleep kept him unaware of the fluid that was filling his lungs. “I’m ready. Let’s go home,” were his final words. He slept and did not arouse again. His son held one hand and his daughter the other. I moved across the room and sat in a chair, watching with quiet reverence. This location provided my parents, aunt, and uncle enough space to be at his side. Perhaps the move was symbolic as well. My grandfather was dying on the couch, but he was also my patient. I needed to maintain some space, to hold on to the equinimitas I had found. Until my task was completed, I wanted and needed to protect my objectivity.

The end came quietly. Some of those present had never witnessed a death before. Startled, they looked to me for an interpretation, a diagnosis, a verdict. My solemn nod unlocked the door to their grief. Together we—his family and friends, his church and community, and me as his grandson and physician— allowed my grandfather to go home and stay home. With grace and courage, he overcame the obstacles presented by the rural location where he lived. With
hesitation and gratitude and with some sense of urgency and necessity, I overcame my uncertainty about the dual roles I was asked to play. I was honored and humbled by the privilege of helping my grandfather write the final chapter of his story. I believe he wrote it well.

Dr. McRay explores a number of important issues: ending life sustaining treatment such as dialysis, managing the dual roles—grandson and physician, the value of religion in exploring the big questions in life. In today’s world technology creates benefits and burdens. We can extend life, but those days and months are sometime more quantity than quality. Dr. McRay helped his grandfather decide to quit dialysis. Have you witnessed or been part of such discussions and decisions with patients? What did you learn? What will you take away from this essay as you help patients explore how they want to die and make decisions about resuscitation, intubation and advanced directives? How is religion and spirituality helpful to patients who have a faith?
Dr. McRay negotiates his dual role more carefully; this is explored more fully in part of this essay that is not included in the blog. What are important considerations for managing the dual roles?

Published in The Country Doctor Revisited (Kent State University Press, 2010) used with the permission of the author

Mashkikiwinini

Thanking Sylvester for His Unconditional Smile

–Arne Vainio

Sometimes teaching comes when you aren’t looking for it or even have the

time to think about it. Recently, one of my partners at Min-No-Aya-Win Human

Services Clinic on the Fond du Lac Ojibwe Reservation in Cloquet, Minnesota,

was off, and I saw one of her patients. Behind and rushed (as usual), I went over

Sylvester’s records enough to know he had metastatic cancer, but his records

were sketchy and I didn’t know much beyond that. Before I went in, one of the

nurses commented that she thought he was in denial about his prognosis. That’s

the expectation I had as I walked into Sylvester’s room and introduced myself. I

expected to see a man desperately holding out for a cure and a miracle. Instead,

I met a smiling man who welcomed me into the room. His eyes were bright and

clear, his smile sincere and real. In spite of that, he was pale, gaunt, and clearly

sick. He had dark circles under his eyes and his words came in short, labored

sentences. His belly was huge, even under his baggy shirt. He was short of breath

just sitting on the exam table.

 

“I would like to know if my cancer is worse. Last year I was told I had five

months to live. This year I’m going to plant tomatoes.” He had no illusions about

his cancer and his prognosis; he knew this was a bad cancer and was spreading.

In the room, I went through his records again and found a CT scan report

from six months earlier from a different medical system. The report stated “interval

worsening” since his last study, with spread of cancer to multiple areas

of his liver, into his abdominal wall muscles, and into the mesenteric area. His

cancer was a GIST (gastrointestinal stromal tumor), which is a rare cancer. It

can either be slow growing or aggressive. Unfortunately, his was very bad and

spreading rapidly. The fact that he had already asked not to be resuscitated was

in his records. There wasn’t much to do at this point except to make sure he was

comfortable and didn’t suffer.

 

He lifted his shirt and I could see the massive tumor under the

skin on the entire right side of his belly. It was tented up at an unnatural angle

and as hard as wood. As I felt around the edges of the tumor, I could feel that

it went deep inside his abdomen and I could feel other smaller tumors.

Sometimes diseases that involve the liver cause ascites, fluid collecting inside

the abdominal cavity. I could not identify this on exam but was hoping for it,

as draining it could help his breathing. A chest X-ray showed part of one of his

ribs eaten away and a mass inside his chest. He accepted this without complaint.

Through all of this, he was smiling and planning his garden.

Dr. Vainio reflects on the lessons that come from our patients. Clinics are busy and we often see patients on a tight schedule. It is easy to be moving so fast that we don’t take the time to get to know patients and learn about their lives and hopes. What lessons did Sylvester have to teach Dr. Vainio? What can we do to help patients end their lives as peacefully and painlessly as possible? Why was Sylvester focusing on his garden and tomatoes?