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Truth or Consequences: What to Do When the Patient Doesn’t Want to Know

From the Department of Internal Medicine, Division of Hematology/Oncology, Virginia Commonwealth University School of Medicine, Richmond, VA.

Address reprint requests to Laurie Lyckholm, MD, Division of Hematology/Oncology, Virginia Commonwealth University School of Medicine, Box 980230, Richmond, VA 23298-0230; email: lyckholm{at}vcu.edu

HERE’S THE CASE

AS A MEDICAL STUDENT, brand new to the wards, I met her. She had a history of gastric cancer and had been admitted for intractable nausea, vomiting, and abdominal pain. For days I was terrified. What might happen if I forgot to ask her how many bowel movements she’d had since the night before? What if I didn’t know whether or not she used her seatbelt when her life was normal? What if I didn’t know enough about her type of cancer? Would I be judged, ridiculed? Would I cry in front of my attending physician? Totally self-absorbed, I went home each day and reread the statistics on her disease. Prognosis grim. Survival past 5 years unlikely. I’d better remember that for the test, I thought to myself.

I learned that she had undergone surgery to create an anastomosis between her jejunum and her esophagus, bypassing the need for the useless leathery stomach that she had already lost to her disease. While examining her, I pictured the diagram my intern sketched on a napkin, the unfortunate outcome of a Roux-en-Y with positive margins, and mysterious obstructions and strictures that no one was rushing to explore. She was dying. She couldn’t eat. She couldn’t move her bowels. What little went into her mouth was promptly jettisoned from her nasogastric tube. Her bowels contained barium that was weeks old. The surgeons wouldn’t touch her. We reassured ourselves with technology and chemistry: her total parental nutrition (TPN) was life sustaining, her morphine patient-controlled analgesia and fentanyl patches were miracles. Good for us.

About 3 days into what was to be a surprisingly brief relationship, I finally became human. I stopped dispensing questions and began to notice things. I began to be able to guess her level of pain by counting the number of furrows between her darkened eyes, by how fast her right leg jiggled, or by what time her mother came in to raise the shades in the low light of dawn. I could guess how many times she had attempted to self-deliver the pain medication that was becoming hopelessly ineffective. Despite her grimace, she was beautiful in a way that few people are. Most astonishing of all, she was less than 3 years older than I. I went home and wondered how such things were possible.

She and her mother, more often now a part of the early-morning landscape of her room, began to find my visits a source of humor. I would awaken them both with the daily review of systems and examination, "the survey" as they began to call it, which became somewhat of a joke among the three of us. The questions, useless and silly at this point, became a source of amusement for us all, but we continued and used it as an excuse to socialize.

In time, she, her mother, and I began to talk in a more meaningful way, and I finally broached the subject of what her expectations were of her stay with us. I wasn’t entirely clear about what she knew about her terrifying illness. In my mind, she had little time. She was beyond cure or improvement. What time she did have left would be painful despite medicines designed to keep her pain at bay. She would never hold food down again. She was still waiting for a surgery that not only was not going to occur but probably didn’t exist. She would never be able to leave the hospital feeling better than she did when she was admitted 1 month earlier. Her mother’s eyes begged me to remain silent. I wished at that moment that I could somehow look at my patient the right way and know the truth about what she wanted for herself. I wanted to know her the way her mother did, as someone who had been living a full life until this recent, devastating turn.

On her last day, she awoke feeling well. She had energy that she hadn’t had for weeks. She offered to sit up so that I could assess the crackles in her lung bases that had developed over the previous several days. She requested that I help her swing her now grossly edematous legs over the side of the bed; she was unable to move their new weight on her own. She demonstrated surprising respiratory effort and asked many questions about her vital signs. The time came for me to see another patient, but she was not ready to lie back in her bed, and asked that I stay a little longer and sit with her. I did, until I finally had to go. As I eased her back into her bed, she began to hyperventilate, grabbing my hand, and pleading for help. Her pulse raced as she gasped for air. As I beckoned for my intern, her eyes rolled to the ceiling and her breaths suddenly became forceful and slow. My mind flew up and down the list of things that could cause this turn of events as I searched through heaps of plastic to find the oxygen mask that would probably not help her. By then, the code team had been called, nurses were everywhere, and the crash cart had left its station. Her oxygen saturation was less than 50%, despite the mask for which I had so deeply dug.

In a matter of minutes, she was gone. Naked, pulseless, without blood pressure, abdomen distended. Blood did not spray, bones did not fracture, skin did not tear. Without fanfare, she was finally allowed to go.

By some act of mercy, her mother was late that morning. Perhaps by another, I was rushed into rounds without fuss. I presented my patients, left the room, and was forced to choose between two miserable options: crying and vomiting. Unable to choose, I did both.

After I finally let relief wash over me, I opened my eyes, walked down the hall, and saw that her mother had done the same. She smiled, hugged me, and told me that her daughter had been grateful for my care, and that this was what her God had deemed appropriate. I tried to say something poignant and wise but was unable to do so. It occurred to me that I had initially regarded her as a collection of malfunctioning systems, more recently as a person I’d like to know, but only at that very moment as a person who had spent 99% of her life as someone else, who had only been a dying patient for a relative instant. Now, when I think of her, I think of her and her mother curled up together in a tiny hospital bed, waking slowly, concluding a life that was lived long before I knew her.

Pamela Neff

LET’S BE HONEST
As part of their third-year medicine rotations, each of our students is required to write an essay about an experience with a patient at the end of his or her life. Often within these essays are obvious signs of moral distress, as seen in Pam Neff’s powerful essay. This is clearly a difficult time for the students. Their sensibilities are raw and exposed. Their eyes are wide open, and they miss very little. They make stunning observations that the more seasoned of us may have learned to ignore, and they ask difficult questions that we may have chosen to avoid.

In her essay, Ms Neff was unsure whether the young patient and her mother really knew how sick she was. The patient, dying of metastatic cancer, was continued on futile treatment and hoped for surgery that "not only was not going to occur, but probably didn’t exist." She was kept in the hospital rather than spending her last days at home with hospice support.

Telling the truth when the truth holds little hope is difficult. Telling it several times a day is even harder and most likely an important source of physician stress and burnout. However, if we are to take the charge of caring for very ill and vulnerable patients, then truth telling must be one of our most precious duties. It is important for patients to know what lies ahead of them so they may make final life choices. It is out of respect for their autonomy that we must be honest about their prognoses. Patients need to plan financially, psychologically, and emotionally. They need the chance to make peace, to say I love you, to say goodbye. They need to know their timelines so they may finish projects and perhaps take trips. They must also make informed decisions about further treatment.

We must tell the truth to maintain the trust inherent in our relationship with our patients and their families. It is out of respect for their autonomy that we must, with personal and professional integrity, be honest with them. How many times have you heard a patient say, "I want it straight, doc?" It is our responsibility to share with the students how precious this duty is.

We should ask ourselves what we would want to know if we were dying of cancer. How would we want it told to us? And understanding that we must honor patient confidentiality, we must also try to share the truth with all those concerned in the patient’s care. Perhaps if we had better ways to tell bad news, it might be easier on us; it might not be such a source of burnout. Only now are oncologists in training being formally taught how to communicate.

Admittedly, it is another story if the patient declines to hear the truth. Often the family asks us to not disclose. In this case, the patient’s mother seemed to plead for the health care providers to "remain silent." But we must first ask the patient, as has been prescribed by those who have taught us to break bad news, what and how much they want to know. And if they ask us to "tell it to me straight, doc," no matter how difficult, we must use our humanity to tell them, and we must never question whether it was the right thing to do.

Laurie Lyckholm, MD

WHAT IF THE PATIENT WON’T ADDRESS THE ISSUES?
It’s easy when the patient says, "Just give it to me straight, doc, so I can tell my family." I’ve even preached this sermon.¹ What happens when no one wants to talk about it or make decisions? I am getting tired of being held responsible for fixing all of society’s ills. Sometimes we should just back off, let what happens happen, and not feel bad about it.

Being the attending physician for this patient during part of her hospital stay, I tried to address "do not resuscitate" status and assess what she wanted to do with the rest of her short life. It was always, "I need to talk with my mother." Next day: "Did you talk with your mom about what we should do if you stop breathing—allow natural death or put you on a breathing machine? Is anyone at home who could help care for you as you get sicker?" "No . . . ."

After a couple of times, I just gave up. Her treating oncologist didn’t get anywhere either. My excuse in rounds was that I was deferring to him. In fact, I just couldn’t stomach it anymore, either. I don’t think I’m burnt out, but I do choose my battles far more carefully than I did previously, and I have stopped pushing the discussions if the patient defers.

It’s not like there were good options for her other than dying in the hospital, anyway. She lived out in the country, and without gastric suctioning and ongoing fine-tuning of her narcotics, she would have been miserable within hours. Hospice out there? Not likely, and anyway, two visits a week wouldn’t cut it.

There were some personal, cultural, and religious differences that likely mattered. I’m white, male, privileged, and 50. She was African-American, female, middle class from the country, and 30. I know other African-American patients who think God has a plan for them and that to alter it by taking away food or IVs or not trying chemotherapy—why, that would be like taking matters into their own hands and away from God’s.

Whatever. She simply didn’t want to be burdened with these discussions. Patients burn out, too, and she got tired of me coming into her room with this agenda. The bad part is that her unwillingness to discuss this issue colored all my discussions with her. We couldn’t talk about the likelihood of chemotherapy and TPN actually helping (darn close to zero), or what she might want to do with her remaining few days of life.

I don’t see any simple solutions until our entire culture addresses the issue of death and dying or insurers stop paying for futile treatments. The likelihood of the insurer coming to the bedside and saying, "I’m sorry, Mrs S, but we have to stop the TPN and chemotherapy because there is less than a 1% chance of it helping you" is less than the chance of chemotherapy working.

Nonetheless, it is our job to address these terrible issues with our patients. Remember, though, my wife the geneticist’s "platinum rule": "Do unto others as you would have them do unto you, but remember, they may make different choices."

If you try, and a patient chooses to not address end-of-life issues, it’s her choice, and it’s not your fault.

Thomas J. Smith, MD

NOTES

P.N. is a third-year medical student at the Virginia Commonwealth University School of Medicine.

REFERENCES

1. Smith TJ: Tell it like it is. J Clin Oncol 18: 3441-3445, 2000[Free Full Text]

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